tag:blogger.com,1999:blog-27239538082912448992024-03-12T20:42:24.113-04:00Tarlov Cyst Disease - Making it One Day at a TimeSharing my journey to encourage my fellow "cysters and mysters" and spread awareness about Tarlov Cyst Disease. There is no sugar coating it. This disease is nasty and life-robbing. Mixing some keepin' it real with a dash of spice, faith and humor. Let simmer for two years or until thoroughly cooked.
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-2723953808291244899.post-80682555716360984672020-02-06T20:23:00.004-05:002020-03-02T19:42:39.125-05:00It's 2020 and I'm still TC symptom free! But, word of caution...<div dir="ltr" style="text-align: left;" trbidi="on">
Just a quick update. I am STILL 100% symptom free! My surgery was a success. I still do not have any of my pre-op pain. The back and forth recovery finally stopped in January 2018. Almost 2 years to the day. I can't believe it's been four years. After two years of going through a deceptive recovery, I was very skeptical and scared that it was just on an abnormally long upswing. I expected the pain would come back at any moment with a vengeance. That is the nature of TC recovery for everyone I've ever talked to, spoken to, interacted and observed in groups with over 2,000 people with in the past five years. I'm not going to drop numbers, but it's well over any numbers you'll ever find in a case study about TC's. I had a hard time believing it. I wasn't sure. I noticed if I didn't take pain medication, the pain didn't return raging. I also noticed my body was getting overly sensitive to unrelated/new things I knew weren't wrong. It's called opioid-induced hyperalgesia and it's different than a tolerance. Mind you, I had been taking a very high dose of opioids for 2.5 years. As soon as I woke up in the morning and my feet hit the floor, the soles of my feet hurt, my knees, my hips, my back...all over. I knew I did not have any disorder that would cause the soles of my feet to hurt. These were not anything like my TC symptoms. I also noticed that if I didn't take the pain medication and as I weaned off of the opioids, that pain went away. So, if you've been on them for awhile and begin to have new pain, I know it will be difficult, but talk with your doctor about cutting down and taking a break. After a few months, I realized...it's gone. It's not coming back.<br />
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I regret taking the Gabapentin because of the weight gain. I don't think it even helped. I also regret taking Topamax and a high dose of Lyrica. That's when I became so spaced out it was like I had Alzheimers. Repeating things. Not remembering anything, conversations I had, going places, meeting people, trouble recalling basic words, slow thinking. It was embarrassing. There is a pretty significant gap in my memory from when I started those medications towards the end. For me, I don't think any of the medications for nerve pain helped me enough to make much of a difference. Maybe a little, but not enough to be worth losing my memory. Many people who have never had <u>severe disabling </u>chronic pain do not understand that you suffer so badly you are desperate and willing (within some boundaries) to do anything to make it go away. If a doctor told me to try something, I would. I hoped it would help. I wish I was in my right mind and could have had the insight to say no or stop them. As soon as I stopped the Gabapentin, I lost 60 pounds without trying. When I came off of all of those medications, I had so much more energy and people said the fast-talking lively Natalie was back. I was doing great, super active, kicking butt and taking names, cleaning out my house after two years of clutter that built up. Then...in October 2018, my back went nuts. Totally unrelated. But back to chronic pain.<br />
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I do have a word of caution. I actually did have symptoms return for 2 weeks. But, I know what caused it. <b>I went to PT</b> for an upper lumbar muscle spasm that wouldn't (still won't) stop. My L3/L4 disc is collapsing. I thought at the time I'd pulled a muscle. I asked the therapist if he knew what Tarlov Cysts were. He said "uh-huh." I explained my TC surgery and that there was nothing but scar tissue protecting that area.<b> I specifically told him ..."Do NOT touch my sacrum." </b> I said it more than once. He started to do a manipulation there and I said, <b>"STOP! Don't touch my sacrum!"</b> I was nice about it, but I think he just thought I was paranoid. I bet you already know where this story is going, don't you? At one of my last visits, without warning, <b>he did a physical manipulation over my sacral area. </b>By physical manipulation, I mean he put both hands over my sacrum and did a pumping motion to check for mobility. Not only did it send me into panic mode, it felt weird. I said, <b>"STOP. I don't like the way that feels." </b>It felt like everything between my sacrum and my front pubic bone was completely hollow. He didn't touch it again but <b>I started to feel pressure over my surgical site like it was going to explode.</b> Then gradually, <b>I started to have a slow progression (about 2 weeks) of symptoms again</b>. <b>I called Dr. F's office</b> and asked if this was normal given I had a full recovery a year earlier. They said yes. They do hear that sometimes from <b>patients who have fully recovered and have an accident, a slip in the bathtub, a fall, a MANUAL MANIPULATION</b>. She told me to go to my doctor, get a week of <u>steroids </u>and a <u>steroid injection</u> and do as <u>little activity</u> as possible for two weeks. I asked, "by 'as little activity as possible' do you mean stay in bed?" She said YES. I went to my doctor. I got a <u>Toradol injection</u> as well as a steroid. My doctor prescribed me two WEEKS of Prednisone and prescription <u>strength Aleve</u>. I prefer Ibuprofen so I took that as she directed. 800 mg every 8 hours. I laid in bed for two weeks, rested and <b>it went away</b>. Talk about a SCARE! So, <b>don't let anybody touch it!</b> Definitely not pump it with both hands.<br />
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Since January 2018, I have had TC symptom pain in my legs maybe 3-4 times for a few hours and nowhere NEAR as severe as pre-op or recovery. I noticed it was on rainy days. Rainy days made my TC pain worse during recovery. I hear that a lot from other cysters as well. <br />
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That's my lengthy update for now!<br />
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com3tag:blogger.com,1999:blog-2723953808291244899.post-28444860178358442322018-05-28T23:49:00.000-04:002018-05-28T23:49:56.379-04:00Soul Cysters Brought Together!<div dir="ltr" style="text-align: left;" trbidi="on">
I have left so many great stories out of my journey while I was having a difficult time focusing and being on a computer. One of these is that God continues to bless me during this journey and physically unite me with the Christian Cysters He placed in my path.<br />
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<tr><td class="tr-caption" style="text-align: center;">Lisa W and Me</td></tr>
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From the initial onset of my disease, I had become friends with <a href="https://tarlovcystjourney.blogspot.com/2015/09/blessings-and-miracles-of-gods-provision.html?m=1" target="_blank">Lisa W</a>, from Louisiana. From the get go, she was one of those people who God used to encourage me. He spoke to me often through her. I recently told her this and she said she didn't even know. I would have times where I was down or having doubts. From the first time I joined her support group on Facebook, she contacted me to let me know I was not alone and that she was always available if I ever needed to talk. Sometimes I would be scared. She would call me, not knowing what my thoughts were, and would say the perfect thing that was exactly what I needed to hear. She would share a Bible verse with me, and I would be blown away because it would specifically address whatever was going on inside of me. Her mother also has TCD and had surgery with Dr. F as well. Both are women of strong faith and encouraged me many times.<br />
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<tr><td class="tr-caption" style="text-align: center;">Me and God's Miracle Worker (Reta)</td></tr>
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<a href="https://tarlovcystjourney.blogspot.com/2015/09/let-research-begin.html" target="_blank">Reta Honey Hiers,</a> Executive President of the <a href="https://www.tarlovcystfoundation.org/" target="_blank">Tarlov Cyst Foundation</a> was another person God put in my path early on. I was so thankful to have her in my life because, not only was she a wealth of knowledge and a great support, but God also used her to point me in the right direction. The fact that we connected when we did was another sign of God's perfect timing. If I ever had any questions, she had the answers. The woman has found God's purpose in her life and I am so thankful that she has answered His calling. I could share my spiritual victories with her and she would celebrate too. She prayed for me. She encouraged me with scripture. She was another rock to me.<br />
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Lisa called me up and let me know that her Dad had a work conference in Knoxville and they were going to tag along. Since Reta also lives here too, we all decided to meet up for the very first time. These ladies who I had spoken to for years on the phone and had spoken to each other, were going to meet and celebrate face to face. Lisa, Jeannie and I all had fully recovered and were off of our medications. It was inspiring to see Reta persevere and be active despite dealing with this disease.<br />
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<tr><td class="tr-caption" style="text-align: center;">L to R: Jeannie W, Kay B, Lisa W, Natalie (me) and Reta Honey Hiers</td></tr>
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We had the most fantastic lunch together. We talked for 3 hours! Another blessing is that there is another nice lady, Kay, here in Knoxville who also has Tarlov Cyst Disease and is contemplating her options. It was great to meet her as well and I hope that Lisa, her Mom Jeannie and my success stories encouraged her. It is not always a clear choice to have surgical treatment and I know God will lead her to make the decision that is right for her. But, there <u>is</u> life after Tarlov Cyst Surgery! (And you don't hear about it on Facebook because...why? We're all too darn <a href="https://tarlovcystjourney.blogspot.com/2018/01/hello-world-real-me-is-back.html?m=1" target="_blank">happy, having fun and catching up on missed time </a>to be on Facebook as we were before.) It was such a happy day for all of us. We share a common bond that is unbreakable.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mama E and Me</td></tr>
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Last July of 2017, when my family and I traveled to Orlando to visit his mother, we were able to visit <a href="https://tarlovcystjourney.blogspot.com/2015/09/blessings-and-miracles-of-gods-provision.html?m=1" target="_blank">Earline</a> and Paul. (Earline had surgery <a href="https://tarlovcystjourney.blogspot.com/2016/09/general-surgery-and-hospital-experience.html?m=1" target="_blank">the same day I did.</a> That was so great to see her! Of course my kids took instantly to them and have been asking when we can see them again! We also got to stop by and see <a href="https://tarlovcystjourney.blogspot.com/2016/09/general-surgery-and-hospital-experience.html?m=1" target="_blank">Susan</a> and meet each other's children! I know we will continue to see each other more in the future.<br />
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I can't emphasize enough the difference that other cysters and mysters can have in your life with TCD. We share a rare bond and face great challenges that most other people, let alone doctors, cannot understand. It's a disease is unlike any other. The support and encouragement from other TCers is so important because we know what it's like to suffer from chronic pain that's more than just a herniated disc or a joint replacement. We know the frustrations of having our symptoms <a href="https://tarlovcystjourney.blogspot.com/2015/09/let-research-begin.html" target="_blank">rejected by the medical community.</a> We know the huge difference between "back surgery" and "spinal <a href="https://tarlovcystjourney.blogspot.com/2015/09/what-is-tarlov-cyst-disease.html?m=1" target="_blank">nerve surgery</a>." We know what it's like to have this disease <a href="https://tarlovcystjourney.blogspot.com/2015/10/watching-world-from-inside-out.html?m=1" target="_blank">rob us</a> of our lives and the <a href="https://tarlovcystjourney.blogspot.com/2015/11/grieving-life-that-was.html?m=1" target="_blank">strain it puts on families and relationships. </a>Through the experiences of others, we can learn what it's like pre-surgery, post-op, <a href="https://tarlovcystjourney.blogspot.com/2016/09/ive-been-berry-bad-blogger.html" target="_blank">recovering</a> and beyond. We can reassure each other that "Yes, I am experiencing that too. No, you aren't crazy. Wait! I'm not crazy!? Well, yeah. I'm still a little bit crazy but, it's not in your head!" I made it through this from my faith in God, prayers from others, my support system and the other cysters. It also gave me a sense of purpose to comfort those who were where I had been.<br />
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<tr><td class="tr-caption" style="text-align: center;">Catching up with my girl, Suzie Q!</td></tr>
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I felt like this was God coming full circle reminding me, "I brought you together for a reason. SEE! I love you and want to bless you beyond what you can imagine would be possible!" But, it's like it says in Ephesians 3:20, <i>Now to Him who is able to do immeasurably <b>more than all we ask or imagine</b>, according to His power that is at work within us. </i>Again, I never would have imagined we would have all been able to sit at the same table together sippin' on our waters with lemon! More icing on the cake from The Man with a plan who can do anything! Thanks be to God! He is good!<br />
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com1tag:blogger.com,1999:blog-2723953808291244899.post-79518322653670659812018-05-26T13:10:00.002-04:002018-05-26T13:11:03.871-04:00Comment notifications stopped working. Apologies for not keeping up with the blog.<div dir="ltr" style="text-align: left;" trbidi="on">
I am so sorry to those who have posted comments and did not receive a response! I just learned that I was not receiving notifications. I just assumed noone was commenting and I wasn't receiving any hits on my blog. Boy was I wrong! There have been over 24,000 viewers! I can't believe it. It just goes to show that those of us who have been touched by this disease are so anxious for support from others and are hungry for information. I went through a period where it was very difficult for me to be on the computer and I didn't post. I'm so sorry for that. I'm better now and plan to pick up where I left off.<br />
Gentle hugs and love,<br />
Natalie</div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-41199718301897881102018-05-21T07:10:00.000-04:002018-05-29T00:37:19.814-04:00No matter where you go, there you are. <div dir="ltr" style="text-align: left;" trbidi="on">
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I would love to say I'm back to my 100% pre-TC surgery self, but I'm not for other reasons. I know at this point that my surgery was a <a href="https://tarlovcystjourney.blogspot.com/2018/05/baby-steps-eventually-turn-into-mile-im.html" target="_blank">100% success</a>. But, the chronic pain and living in bed lifestyle had its consequences. I developed mild atrophy in my lumbar spine. My piriformis muscle was still very unhappy from sitting so much. (That's in your buttocks.) My scoliosis began to strain my back muscles more. I gained 60 pounds over the last two years. I still struggle with stamina issues but not nearly as bad as when I was on 11 prescriptions. My back is so temperamental and mean to me. Such a drama queen of a back! Things like taking sheets and blankets off the bed and putting them in the washer, lifting a laundry basket, pulling the kitchen trash bag out of the bin, lifting or placing boxes of sodas in the bottom of my shopping cart, bending over for pretty much anything, hurt up my back. But, the good news is that I am in PT now and after 2 months, I can already tell I'm getting back on track. Most days are good days where I can run around to appointments and do errands, pick the kids up to school, etc. I'm tired and sometimes sore when I get home and have to rest. But, as long as I'm careful and don't do a lot of bending or lifting, I'm ok.<br />
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As I mentioned in a previous post, it wasn't only the pain and fatigue that kept me in bed. It was also the <a href="https://tarlovcystjourney.blogspot.com/2018/01/hello-world-real-me-is-back.html" target="_blank">FEAR </a>of pain. I was scared to do anything that could make that horrible pain flood my body. Sometimes I just went for it because I thought it would be worth whatever experience I was going to have. And sometimes, I was pleasantly surprised that I didn't have pain. I think it took me going through several experiences and milestones to help me get over the fear and see that I could be active without that backlash I had in the past. </div>
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In April, my sons and I flew to Florida to visit my<br />
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Mother-in-law. Unfortunately, she got sick so I had to take the kids to Animal Kingdom by myself. I had come off of all of my medications by this point so my body would take a shocker from a long active day. I hadn't driven more than 30 minutes in over 2 years so I was very nervous about that hour drive and stand still traffic. But I did it and made it throught the day without problems. I rented a scooter for fear I'd crap out and ruin it for the kids. I'm glad I did. I rode roller coasters and felt great and lasted until it was late in the evening. I was exhausted and sore the next day and needed a recovery day where I did basically nothing.</div>
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Later that week, I took the kids to Sea World's Aquatica water park. Hol-eeeee Cow! I don't know how many flights of stairs I went up, also carrying my and my youngest son's mats. We rode a bunch of water slides, swam in the wave pool, played in the kids area and rode the rushing river (many, many times.) My body was hurting all day the next day and it took me a few days to recover from the entire trip. It was much more intense. But the point is that I did it! I honestly couldn't believe I was climbing stairs and carrying mats and tubes! And NONE of that would have been a remote possibility or reasonable expectation before surgery. When I came off of all of the medications and realized surgery was a sucess, I called my friend Earline who had surgery the same day I did. While we were healing I think, like many, she regretted having surgery because she felt like it made her worse and she had to have another surgery for another back issue. It took us both a lot of pain, frustrations, doubts and time. But I was thrilled to death when she told me she was doing great and back to playing tennis again! Yay Earline!! I couldn't even do that before I had symptoms!</div>
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The most frequent questions I am asked on Facebook support forums are: <b>1. How long did it take you to get better? 2. Are you glad you had surgery or do you regret it?</b></div>
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So, answers. #1. 15 months on lots of meds and around exactly 2 years I came off of meds. I could tell I was getting better because the backlashes from activity became shorter and shorter. I was gradually able to do more than before surgery without paying for it as much. Eventually, the nerve pain faded away, despite whether I was active or inactive.</div>
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<a href="https://1.bp.blogspot.com/-XqTZLJEMnXM/WwKnix5oVbI/AAAAAAAAT4c/vOWxF7jwTbk_ApAaVxWsjNssUoUNPpxoQCPcBGAYYCw/s1600/wherever-you-go-there-you-are-quote.png.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="333" data-original-width="500" height="213" src="https://1.bp.blogspot.com/-XqTZLJEMnXM/WwKnix5oVbI/AAAAAAAAT4c/vOWxF7jwTbk_ApAaVxWsjNssUoUNPpxoQCPcBGAYYCw/s320/wherever-you-go-there-you-are-quote.png.jpeg" width="320" /></a>#2. Without a doubt! I have no regrets. I made the right decision. (I had a little help from the Man upstairs making that decision. It was very clear what I needed to do.) I did have a lot of pain during recovery but I knew it would be that way before I went in. Sometimes it was worse but I knew it was a good sign. My body was still healing because when those nerves are healing and regenerating, it causes pain. Pain after surgery is a good thing. It was long and rough but at least I knew I was hurting while healing, not hurting while getting worse. But in the end, my Tarlov Cyst Symptoms are gone and I consider it a 100% success. <br />
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My challenges now are to build muscle strength and more stamina. I believe that, back when I was still on the medications, I had the same muscular "shock" that my body didn't feel until now when I'm active. But, I think the medication prevented me from feeling the full impact of long activity. </div>
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So far, since I simply started to become more active and less sedentary, I've lost 10 pounds! I started the Keto diet 2 weeks ago which is supposed to help inflammation. Hoping to get back to my pre-surgery size. I'm sure getting some of that weight off will help my back issues as well.</div>
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I still have many things to share. Updates on research, other personal health related matters and some more God winks! Stay tuned for that in the upcoming posts. </div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-16117955487187621722018-05-18T13:50:00.000-04:002018-05-29T00:51:33.026-04:00Baby Steps Eventually Turn Into a Mile. Surgery was a 100% success<div dir="ltr" style="text-align: left;" trbidi="on">
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I have been putting off this posting because I wanted to make sure that my health update is for real and not just another up time on the roller coaster ride of recovery. I have finally healed! Praise God for his love, provision, mercy, comfort and reassurance through his overwhelming presence through this 2.5 year ordeal. This post is very long but will encourage post-op Tarlov Cyst patients and I believe they will find this story very helpful. I'm just going to address my pain and medication and will update you on my current status in the next post.</div>
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My two year surgery anniversary was this past January 13th, 2018. My nerve pain had gotten so much better about 15 months out but I began to have a lot of back pain. So, I continued the medications, including the opioids. </div>
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<b>Coming off of 7 medications, </b><b>including</b><b> narcotic opioids.</b></div>
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Around February, I had to visit a colorectal surgeon for some complications. He looked me straight in the eye and said the surgery I need is very painful and he was very hesitant to perform it because of the amount of opioids I was on. He said there would be nothing they could do to help my pain. I was on 120 morphine equivalent doses, which is the Tennessee State maximum allowed for non-cancer patients. That same week, I saw my psychiatrist and told him how tired I was all of the time and I had no energy. He said, "I hate to tell you this, but that's the pain medication." That same week, I also spoke to one of my good friends who is a physician's assistant. (I believe that's the highest provider next to a doctor.) We discussed all of the crap ton of medications that I was on and she told me the side effects of each. She said, "No wonder you are so tired and feel like crap!" It was a wake up call.</div>
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I came up with a little rhyme for what I discovered about pain meds. <b><i>Opioids</i></b><i><b> mess with the pain receptors in your brain. You become more sensitive to your pain.</b></i> (I am a self-declared goof ball.) From the second I put my feet on the ground each morning my heals hurt, my knees hurt, my hips hurt, my butt and back hurt. The pain was debilitating. I had been so much better at 15 months post-op on the meds and they helped me function and have a normal life again. (<a href="https://tarlovcystjourney.blogspot.com/2018/01/hello-world-real-me-is-back.html" target="_blank">Refer to previous post on Universal Studios</a> from dawn til dusk on my feet and riding roller coasters).</div>
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I took all of those conversations within the same week as a divine message that it was time to get off of the meds. I HATED HATED HATED being physically dependent on something that could make me go into withdrawal if something like a trip came up and I couldn't fill my prescriptions early. I hated being followed on the state registry where they flag you for some circumstances beyond your control (like when Dr. Feigenbaum prescribed me medication from out of state, or when you fill your prescription at a different pharmacy because yours is out or doesn't carry what your pain management provider prescribes). I HATED the thought that if I were in a car wreck and had to go to the ER, there wouldn't be anything they could do to help pain. I HATED the stigma. I HATED the thought of being treated like a drug addict. (Please refer to post about <a href="https://tarlovcystjourney.blogspot.com/2015/10/addiction-verses-dependency-and-why-you.html" target="_blank">difference between physical dependency and addiction</a>). All of the restrictions and regulations nearly make you a nervous wreck. I wasn't just physically dependent on the pain medication, but also 4 other non-narcotics. </div>
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There was a progression to my healing. First, functioning without pain while on the medications. Second, I would have backlashes of shorter time or no backlash after being active. Third, I could tell the nerve pain was gone because I didn't feel it after my morphine wore off. I will say that around a year after surgery, I had to undergo an operation for a cystocele and a rectocele. I feel like that surgery and recovery threw me backwards on the TC healing timeline. I was feeling pretty well before that. But winter weather also didn't help. But, by the end of January 2018 (Surgery-Jan 13th, 2016), I weaned myself off of 60 daily mg of the morphine, which made up half of my daily opioids. I immediately started feeling better and the whole-body pain went away. That was another sign it was time for the narcotics to go. I was highly motivated and determined to get off of all of the meds. In February, my Uncle passed away and I needed to reschedule my appointment because we had to go out of town. When I called pain management, they said they couldn't see me until a month later! Ummm... oh crap! I told them I would go into withdrawal and what in the heck was I supposed to do!?!? It ended up being a blessing in disguise because they prescribed me Clonidine to take and cause my body to not have withdrawal symptoms. The end result was what I wanted anyway! I'll share more about that experience further down.</div>
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I started to gradually wean myself off of the 1800 mg (600mg 3x a day) of Gabapentin (Neurontin). That's a very high dose. It sucked I had to look up the physician information on the schedule for weaning off, but that's what I did. (Please don't do that. I would definitely recommend that anyone be under a doctor's care because it is dangerous. At the very least, call your pharmacist.) I also started weaning off of other medications: Topamax (Topiramate) 50mg a day, Three 10mg Flexerils (cyclobenzaprime) a day, 75mg of Lyrica, and a high dose of 500 mg prescription Aleve every 12 hours. 3 flexerils is A LOT! I remembered that years ago, I used to take one pill for migraines and I'd feel like crap until the next day. Three!! I was also on a medication to help urinary retention that I started around surgery time for cystocele/rectocele. I was also still on my psychiatric medications and sleep medication I'd taken for years. That included 120 mg of Cymbalta (also used to treat nerve pain) and 1mg of xanax twice a day. I have to admit the xanax helped take the edge off of the pain. I have no idea how I was functioning but I didn't feel the slightest bit drunk. I did however have trouble with short term memory. I would forget conversations. I still can't remember a lot of things that happened while I was on all of that. I also had a hard time recalling simple words. Words like "door," "shirt," "Gatorade." I'd point and get frustrated and say, "Ugh! You know, that thing...over there." Apparently, I didn't realize it, but I was speaking slower than I normally do. After I was off of everything, they told me I looked different, sounded different and they could tell I was back!</div>
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The week I started the Clonidine was also the week my husband had to go out of town for work. My Mom came over to stay and help with the kids. That was another God thing because little did I know the .3 mg of Clonidine 3x a day was going to knock me out and make me so weak I could barely walk to the bathroom. When my husband got back, he had to give me a bath because I couldn't stand to take a shower. Thank God AGAIN for his provision because my Mom was able to take care of me. I can see how God had the perfect timing planned out before I even knew it. Aside from that, I had no withdrawal symptoms, which is FAN-FREAKIN-TASTIC compared to actual withdrawal. After those 5 days, I was off of my (Opana) oxymorphone (the long acting opioid you can't split in half or it could literally kill you) and completely off of the opioids. By the time my appointment came around I was off of the Gabapentin, Topamax, Aleve, Lyrica and Flexeril. That's 7 medications!! I had been on a total of 12 medications! </div>
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My nurse rejoiced with me and was so happy for me. So were my pharmacists and friends. I was overjoyed and so happy that I was healed from my Tarlov Cyst Surgery. The journey took forever and felt like it would never end. Tiny baby steps and milestones took forever. But gradually, it got better. <br />
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I did have slight nausea and headaches for about 3 or 4 weeks after that and had to have another week of Clonidine. (But this time I asked for a lower dose and went with .1) My pharmacist said that he would expect me to have some of that coming off of as many medications as I was on. It wasn't too bad. Just annoying.</div>
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That's the story of coming off the meds. Next up, <a href="http://tarlovcystjourney.blogspot.com/2018/05/no-matter-where-you-go-there-you-are.html" target="_blank">Where I'm at now. </a></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-41410000546099450372018-01-04T01:39:00.002-05:002018-05-29T01:29:46.708-04:00Hello World! - My recovery timeline.<div dir="ltr" style="text-align: left;" trbidi="on">
I was trying to think of a title for this entry. I wanted to write/scream, "I AM BETTER!" with decorations and balloons, but that isn't altogether 100% true because how do you define "better?" But, yes. I am most definitely, absolutely, living life, walking-theme-parks and roller-coaster-riding BETTER. How do I catch you up without writing a novel? Sorry. I have to write a novel.<br />
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<tr><td class="tr-caption" style="text-align: center;">Do NOT try this at home. </td></tr>
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So, how long did it take from surgery until I was "better?" I don't think I realized I was "better" until I took my boys to Orlando to visit my Mother-in-Law this past May, 2017. (Surgery was January 13th, 2016.)<br />
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We visited Thanksgiving 2016 (10 months post-op) and went to Disney and Legoland and I went all day and rode a scooter but also rode all of the rides, including...ROLLER COASTERS! <span style="color: #338296; font-family: "open sans" , sans-serif;"><span style="background-color: #f8f8f8; font-size: 14px; white-space: nowrap;"> </span></span>I felt so thankful to be there and have that experience with them. Especially since my youngest had never been. This was during the time when I was just starting to re-enter society and small things were big achievements. I was driving occasionally again but only short distances. Short trips to the store. Maybe drive myself to an appointment here and there but rarely. Those were big milestones. I had driven once and gotten stuck because my right leg and piriformis muscle locked up and started hurting down the back of my leg like you know what. The fear of that happening again kept me close to home since then. I was still having up and down days and making commitments was pointless because I could not predict if I would be able to attend or do anything on a certain day. I missed a lot of events I really wanted to go to because of bad days. There really wasn't a rhyme or reason to it. Sometimes I could tell it was the weather but other than that, just random. One day I might be able to drive to the store. Then be in bed for 2 days straight. Some days, taking a shower was a milestone. To say I had to lower my self expectations is an understatement.<br />
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<a href="https://4.bp.blogspot.com/-ubNRkD6BZ1Q/Wk25vdPQYNI/AAAAAAAASiU/E5jXQDUUcwkZdfyvRrXSF2lF_JUZmM5pwCPcBGAYYCw/s1600/15156938_10155202895204879_6359641503560734245_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1440" height="240" src="https://4.bp.blogspot.com/-ubNRkD6BZ1Q/Wk25vdPQYNI/AAAAAAAASiU/E5jXQDUUcwkZdfyvRrXSF2lF_JUZmM5pwCPcBGAYYCw/s320/15156938_10155202895204879_6359641503560734245_o.jpg" width="320" /></a>Yep! I'm crazy!<br />
I dove right in and said this is either going to kill me or be a lot of fun. It was a lot of fun. Skipped the wooden ones though. I think they should give handicapped people who survive Disneyworld a certificate of Achievement. It sure felt like I deserved one! I was so proud of myself! I was tired. Hurting by the end, but I made it. I had to rest in bed for a few days afterwards. But, the prize was seeing the excitement in my kids' eyes and watching their faces light up when they lit the castle with Christmas lights.<br />
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At 12 months, I was able to tolerate a long car <br />
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ride and we went to the beach for a few days. However, the entire time that I traveled was spent in the back of our van, laying on an air mattress placed on top of foam and surrounded by pillows. I didn't do very much and spent most of my time in bed but it was still good to see the kids with the rest of the family.<br />
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When we flew back to Florida in May, 2017, we got to Universal Studios around 8:30 am and I decided I was going to walk as long as I could and then go back and rent a scooter. We purchased fast passes because we knew it would be worth it not to have to wait in line, especially with my condition. We were only going to be there once. Around 9:00 pm, we were tired. I was tired and had to sit on a bench towards the end of the park. But who gives a rats patootie? Because guess who walked the entire Universal Studios and rode the roller coaster and all of the rides and never got a scooter? ME!! That was the moment. That was when I realized, Oh-my-freakin-gosh! Did I really just do that!? I think I'm finally better!<br />
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You have to understand, after living with pain for so long and being unsure of what your "limits" are because they change everyday without notice or even post-it notes, there is an element of fear. You are afraid to do things because you fear the pain that may/will come after. So, in a way, the pain controls your life and even your probable life. So, you just have to say, screw it. I'm going to hurt anyway. I will not let fear run my life and just jump in head first. Not an easy thing. I sounds like I'm an expert at doing that. I'm totally not. I'm more of a belly flopper most of the time. </div>
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I don't know exactly how to define <i>better</i>. I am still taking opioid medications and have to in order to live my happy out-and-about days. However, I think I am getting close to being able to come off of them. I have more days where I skip taking my morphine. But I am on an ER so it's hard to tell unless I were to just skip that and see what happens. Since things are still up and down and winter is the worst time of the year for me and I've developed more health issues and pain, my PM doctor and I decided this time of year might not be the right time to try it. But, they help me function and live a normal life. I don't feel any mental side effects from them anymore and haven't for years. Eventually, for some, your body gets used to it. But, if it helps me live a normal life and be with my kids as opposed to being in bed in pain, then I will continue to take them. But dang I can't wait to get off of these so I can have a giant glass of red wine. Have you seen the wine glasses they sell that are basically a glass bottle with a glass on top? We got one as a dirty Santa gift. Man, I can't wait to be off of these darn things.<br />
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<li><span style="font-size: large;"><i>Side note: Some of you have emailed me and asked me what other medications I am on. Aside from an extended release opioid and an immediate for breakthrough pain, I also take 75mg of Lyrica, 120mg of Cymbalta, 50mg Topamax, cyclobenzaprine, 600mg Gaba every 8 hours and 500mg of Naproxen every 12 hours. I also take medication for sleep and anxiety and I do believe those help as well during the night. </i></span></li>
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So do you define <i>better</i> as when you have no pain and you need no medication? I don't. Before surgery I had a lot of pain while on opioid medication and now, it's gone. I rarely have any TC related pain anymore. I have the random "flare up" that you will hear other TCers talk about. Is "better" when you no longer have flare ups? I don't think so on that either. I think of it like this. Those of us who went through surgery, went through a huge trauma in our body. To make the major stenosis of every single one of our sacral nerves better, the nerve surgery we had essentially had to make things worse to make things better. Cutting into a ballooned nerve, draining it, packing it with fat, suturing it (YES, SEWING UP A FREAKING NERVE!! Can you imagine this?), then wrapping it in bovine pericardium (Cow heart tissue) is DEFINITELY making things worse and tripping the heck out of those nerves. And don't forget the replacement of the outer sacrum with the dissolvable plate and screws. Imagine a person who has neurological symptoms and pain and had to have back surgery because a herniated disk caused stenosis (narrowing of the spinal canal that touches a nerve. ONE nerve. It TOUCHES A nerve.) TCers sacral nerves are completely squished because those evil greedy space mongers take up the entire spinal canal in most all cases. Multiply that herniated disk and 1 nerve times 8 or 16 and that's us. Depends on how many cysts you have and where they are.<br />
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<i>But, "Those don't cause any symptoms," says the Know-it-all Neurosurgeon.</i><br />
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<i>"Then why do my symptoms match the dermatome chart exactly where my cysts are located?" </i><br />
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<i>"Oh, Um, Cough, Cough, that's not causing your problem. My steller outdated education told me so. (Didn't she see my prestigious publications and awards in the waiting room?) You've been reading too much on the internet." </i><br />
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<i>"Yeah, well I found this girl on the internet who went to a guy named Dr. Feigenbaum in Dallas, Texas and she had surgery and now she's better. And he's treated over 3,000 patients and there are support groups on facebook where hundreds more of his patients say they had surgery and are doing better too."</i><br />
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<i>"Fairytales! Don't let that man touch your back! He's probably just out to make money. (I'm just secretly jealous that I didn't come up with something like this first. Lemony Snicket!)"</i><br />
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<i>(Ok, whatever dude.) "Thanks (for your worthless input.) Can I have my MRI back please?" (Thank goodness I starred Dr. F's website on my phone so I can call them right now.)</i><br />
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So, of course that is traumatic and is going to take time to heal. They said it takes 6 months - 2 years <br />
to recover. I personally think we will be dealing with Tarlov Cyst Disease our entire lives, even after our cysts are treated. <b>The surgery does not cure the disease.</b> I think we will continue to have flare ups. You hear about people who were injured in sports when they were a kid and as they get older, the injury returns and causes them problems and more pain, like arthritis or locks up their joint and they can't get the same range of motion they once had. I imagine our bodies will respond the same to Tarlov Cyst Surgery. Our bodies have been injured to treat an injury and I think there will occasionally be times, like when the weather changes, or we drive a car for 8 hours or do some sort of exertion that our bodies don't like, we might get a flare up. But I am ok with that because the trade off has been life changing. Before surgery, I had no life. I could not participate in life and was <a href="https://tarlovcystjourney.blogspot.com/2015/10/watching-world-from-inside-out.html" target="_blank">watching it go by from the window in by bedroom.</a> I saw my friends going out and posting their pictures on facebook and I knew I would have been there too if I didn't have this stupid disease. I was missing my children's school activities, school programs and was not playing any kind of active role in parenting my children aside from talking to them from bed and seeing my youngest when he came home to stay with us on weekends because I couldn't care for him during the week. He would ask if he could cuddle with me and I could barely stand for him to touch me because I was in so much pain. He was a part from our family and it wasn't right. I felt like I was cheated 2 years of his life. I still do feel like I was. <br />
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But, now, I move forward. I can take care of my kids again. I can shuttle them around. I can take them to playdates and meet other moms. I can go to school functions. We've had birthday parties. I've already gotten to go on field trips with both boys' classes. My son can cuddle with me and it doesn't hurt anymore. My life has pretty much been restored. So, for me, surgery was worth it. I would say definitely 100% it worked. I have Dr. Feigenbaum and God to thank for having my life back. I feel so blessed that I found him when I did and was financially and physically able to go to Dallas to see him and have surgery. I can't imagine what my life would be like had I had to continue living with that horrible pain. This whole experience had put a huge strain on our family, my marriage and affected my boys. It has been hard. If you do not have a strong support system that can take care of you and anyone you are responsible for, or if you can't afford to take FMLA off from work for a good 3 months, my opinion is you should not have this surgery. You MUST have a support system. Otherwise, it will be very difficult and painful for you, your recovery will be slower and your results may not be as positive.<br />
<br />
As a result of me being in bed for nearly 2 years, I have gained a lot of weight. 60 pounds. I look back at the picture of me when I met Dr. F. I can't wait to have that body back. I'm scared, what if I can't. I'm 3 months away from 40 as I write this now. I am seriously disgusted with myself. I'm embarrassed to go out because people don't recognize me because I look so different. I have always been thin natured my entire life until now and I don't know how to diet. Since all of this, I have developed other health issues. I had a cystocele and a rectocele and had to have surgery for both of those three months ago. The recovery for that sort of threw me back into the dark ages of TC recovery. It made it harder to recover and some of my symptoms even came back every now and then. I think that was because the surgery was in an area kind of close to the cysts. Probably shook things up a bit. But, it definitely sent me backward on my ladder of progress and it was an even slower climb back to the top rung. I also have since found out I have arthritis and bone spurs all up and down my spine that are equivalent to that found on a 60 year old who has worked hard labor her entire life such as construction or factory work. I'm quoting my doctor there. I've never even played sports! One of the discs is completely collapsed which might answer as to why my back hurts there. IDK. Stuff going on in my knees. I'm still having issues related to the rectocele surgery so I'm in the process of being sent to and orthopedic doctor and a gastro doc. I still wake up every day in pain. As soon as my feet hit the floor in the morning, pain radiates throughout my body. But, it's no longer the TC nerve pain. Now it's this other crap and I guess some of my fibromyalgia. Hopefully I can lose some weight and things will get better.<br />
<br />
Don't know when I will update again but thank you to all of you who have written me and reached out to me to talk about your struggles with TC disease. It's reminded me I needed to put an end cap on this story. It doesn't END here, but I wanted you to know that it did have a happy ending. I'm sorry I did not write more details during recovery to tell you when I was able to do certain things. I have gotten a lot of questions about that. But, don't compare. Everyone is different and heals at different rates. God bless all of you and please keep emailing, commenting and sharing your story. I love hearing from you.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-58mgTny3xWg/Wk3EiYB32uI/AAAAAAAASik/VDjiUYBK0c05jCLu-ONoLA_QTsLjxiwRACEwYBhgL/s1600/self.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1309" data-original-width="1145" height="200" src="https://3.bp.blogspot.com/-58mgTny3xWg/Wk3EiYB32uI/AAAAAAAASik/VDjiUYBK0c05jCLu-ONoLA_QTsLjxiwRACEwYBhgL/s200/self.jpg" width="174" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm being transparent. Me 60 pounds<br />
later after being in bed for too long. I'll post<br />
a pic later after I lose weight. The field trip <br />
pics above were just taken this month too. <br />
Just depends on the camera angle. <br />
If I can tackle TCs, hopefully I can<br />
tackle 60 pounds!</td></tr>
</tbody></table>
<br />
<div dir="rtl" style="text-align: right;">
<span style="color: #e06666; font-family: "verdana" , sans-serif;">Natalie</span></div>
</div>
</div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com2tag:blogger.com,1999:blog-2723953808291244899.post-40992098540763194842016-10-21T17:27:00.000-04:002016-10-21T17:29:00.844-04:00Catching Up is Hard to Do - So, let's do a video blog!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-size: large;">Catching up - Post-operative instructions, information, and experience. Update on recovery and my current pain management regimen.</span><br />
<span style="font-size: large;"><br /></span>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/BFJnCidDnZE/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/BFJnCidDnZE?feature=player_embedded" width="320"></iframe></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com3tag:blogger.com,1999:blog-2723953808291244899.post-88722298588961735002016-09-16T14:03:00.003-04:002016-09-16T14:16:41.149-04:00Pre-surgery instructions, pre-operative clearance, post-operative report<div dir="ltr" style="text-align: left;" trbidi="on">
I am posting three documents at the bottom of this entry for your viewing pleasure. Yay! This will be a gripping page-turner that will thrill you so much you won't know what to do with yourself. You can gain a lot of detailed information from these documents about what you (or another patient) have to do prior to surgery as well as the detailed explanation of the surgery itself. If you have any questions, comment below or feel free to send me a private message. I will do my best to answer them based on my personal experience.<br />
<br />
<b>Surgery Instructions</b>. This is what you must do prior to surgery. I did not copy the back side of the page that had directions to the hospital, hotel information etc. because you can find that online.<br />
<br />
<b>What To Bring With You for Surgery</b><br />
<br />
This information was supplied from Dr. Feigenbaum's office.<br />
<br />
<ul style="text-align: left;">
<li>Medications</li>
<li>Pair of shoes that are easy to slip on and off to avoid bending</li>
<li>Comfortable clothing that will not rub your incision site</li>
<li>Personal hygiene items (basic products will be provided such as a toothbrush, toothpaste, comb and lotion.)</li>
<li>If you so choose, you can bring your pillow and blanket.</li>
<li>Please remove all jewelry for surgery, including body piercings.</li>
<li>Those with long hair, please put your hair up in a pony tail with a non-metal hair tie.</li>
</ul>
<br />
<br />
<b>Pre-operative Clearance</b><br />
Dr. Feigenbaum will send orders to your primary care physician for lab tests and an EKG. The results must be faxed to his office before you will be allowed to have surgery.<br />
<br />
<b>Operative Report</b><br />
I was confused by this at first because of the description of the nerves/cysts. These are NOT where your cysts are located. They are the name of the nerve root that the cyst is in. I had one that was treated (sliced open, drained, packed with fat, sutured, wrapped) and the three others did not have to be cut open.<br />
<br />
I believe I received a post-operative summary from the Neurologist who conducted the ongoing intraoperative nerve monitoring. They do send you information on what they will be doing. This monitoring is very important because it allows Dr. F to see if anything happens when he touches a nerve. They insert needles into many parts of the body (while you are asleep) and monitor nerves in upper torso, below the waste, and nerves related to bowl and bladder functions. When you wake up from surgery, you may see some slight bruising or blood spots where the needles were inserted. All of us girls had the same bruise on an area of our hand.<br />
<br />
I've had some recovery regression since I posted last. Intense nerve pain returned to my legs and pressure over my sacrum. The first time was after I walked for 20 minutes. I was down for 2 days. This makes no sense since I am usually able to get out for a bit. I did have to climb up a hill, which engaged the piriformis muscle and I believe triggered the sciatic nerve. Then, for no apparent reason, I could barely walk for two days and have spent my time in bed since I last posted. The weather had not changed and I had done nothing on my feet to aggravate it. The only thing I can think of is that it may have been because I was going through a period where my nerves were regenerating/growing. That causes pain.<br />
<br />
Below, you will see a picture of my spinal canal pre-surgery and post-surgery. You cannot see all of the cysts from this view but you can see that the large one is compressed, the nerves and cerebral spinal fluid now flow freely through the end of the spinal canal. In the "after" picture, there is a slight bulge from the bovine pericardium (cow heart) wrapping.<br />
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<a href="https://2.bp.blogspot.com/-6VtdF4PfVP4/V9wyaNd7BFI/AAAAAAAAObs/nyedzFLQbtIyQ06nheb1sRFonVT6FaSGQCLcB/s1600/Before%2Band%2BAfter%2Bpicture.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-6VtdF4PfVP4/V9wyaNd7BFI/AAAAAAAAObs/nyedzFLQbtIyQ06nheb1sRFonVT6FaSGQCLcB/s320/Before%2Band%2BAfter%2Bpicture.jpg" width="320" /></a></div>
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To see the post-op report and documents, click <a href="https://drive.google.com/file/d/0B4kktcvzMoqwXzZQZWx3TFYtU2c/view?usp=sharing" target="_blank">HERE. </a></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-76450050033336977352016-09-08T14:58:00.003-04:002018-05-29T00:13:08.302-04:00General surgery and hospital experience (Friendships by His Design)<div dir="ltr" style="text-align: left;" trbidi="on">
If you read some of my previous posts, you know that several of us women who had connected on a Facebook support group page had grown close to each other. We found out we would be having surgery the same week! These were the ladies I was closest to and the odds of having surgery with them at the same time were so slim. We all felt like it was a miracle and that we were being put together for a divine purpose. We appropriately named ourselves "The January Cysters." Honestly, I think most of us were so excited that we were going to meet each other that we weren't as worried about surgery. At least I was! It made a hard situation actually, dare I say, fun! It was like we were having a Tarlov Cyst Surgery after party! Earline, or Mama E. as we call her, had surgery the same day that I did. Cindy, and the two Susan's had surgery the Monday and Tuesday before us. One Susan actually is from Tennessee, not far from where I grew up! What are the odds? VERY slim! We all stayed at the same hotel - <a href="http://homewoodsuites3.hilton.com/en/hotels/texas/homewood-suites-by-hilton-dallas-market-center-DALMCHW/index.html" target="_blank">Homewood Suites, Dallas Medical Center</a>. Many recovering patients stay there and I highly recommend it. They have full kitchens and serve dinner each night, which makes it easier. Ordering out for 10 days would cost a fortune. Also, when staying at any hotel near Pine Creek Medical Center, <b><u>don't forget to call and ask for their medical rate.</u></b> You cannot get this rate online and it is typically significantly lower than the usual discounts.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-hmxI40Lf9yI/V9GnDzNjHoI/AAAAAAAAOaU/D9tM81V5nEwZXcZ44i-UDzK_D61YC1pawCEw/s1600/12507503_10153863580662500_3367796770336962674_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-hmxI40Lf9yI/V9GnDzNjHoI/AAAAAAAAOaU/D9tM81V5nEwZXcZ44i-UDzK_D61YC1pawCEw/s320/12507503_10153863580662500_3367796770336962674_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready for Surgery!</td></tr>
</tbody></table>
I was the first patient to have surgery that Wednesday morning so I had to report to Pine Creek Medical Center for surgery prep at 5:30 am. They had me change into a gown, put a cap on my head, and put an IV needle in. Dr. Feigenbaum and his nurse Stephanie came by to see me and ask if I had any questions. I was not nervous at all. In fact, I was excited. I was so happy and excited to have surgery because I knew it would allow me to get my life back. They rolled me into the room. I saw the table, which is called a Wilson Frame. The table looks pretty weird. It definitely peeked my curiosity and I asked them, "How in the heck are you going to get me onto that thing!?" No sooner than I had asked that, they inserted the IV into my tube and I was off to la la land.<br />
<br />
I awoke kind of groggy and they were wheeling me to my <br />
room. I was still very numb and couldn't feel much. My lower back had pressure but that was all. My husband was there waiting for me. There were "boots" on my lower legs that inflated and deflated with air to prevent blood clots. A few minutes later, a short red-headed lady dressed in a red robe walked into my room using a walker. I immediately recognized her. It was Cindy!! I reached out to her and she held my hand. I was SO excited to finally meet my dear friend face to face. As a matter of fact, I got so excited that they made her leave because every time I spoke to her my heart rate went too high.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-j4swrUeEByc/V9GnDjeeZqI/AAAAAAAAOaI/GytgOjFTnEIQGNJ5cQXFTleawhTG1uN4wCEw/s1600/12494653_10153863581032500_7882275412801604567_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="176" src="https://1.bp.blogspot.com/-j4swrUeEByc/V9GnDjeeZqI/AAAAAAAAOaI/GytgOjFTnEIQGNJ5cQXFTleawhTG1uN4wCEw/s320/12494653_10153863581032500_7882275412801604567_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cindy and Susan A visiting me the afternoon after surgery</td></tr>
</tbody></table>
<br />
Dr. Feigenbaum had gone to the waiting room and told my husband that everything went well. There were 4 cysts. He was actually able to squeeze the CSF fluid out of 3 of them and then just wrap them so they wouldn't return. One had to be cut, drained, packed, sutured and wrapped. I will explain the details of the surgery in another post.<br />
<br />
<div style="text-align: right;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-dzIhKVn5gjA/V9GnDw762DI/AAAAAAAAOag/QtwwUyydLxs2UjKYOHF05mrtxjUPpBjSACEw/s1600/12647286_10153816559884098_7529236325039195681_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-dzIhKVn5gjA/V9GnDw762DI/AAAAAAAAOag/QtwwUyydLxs2UjKYOHF05mrtxjUPpBjSACEw/s320/12647286_10153816559884098_7529236325039195681_n.jpg" width="220" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Susan A and I walking the halls</td></tr>
</tbody></table>
When you get out of surgery, you have to lay flat for 24 hours. That is because they want to make sure there is no cerebral spinal fluid leak. I had a dilaudid IV pump that I could press anytime I had pain. But, I don't remember having much pain. I was highly medicated. I also had to wear pressure stockings. After 24 hours, they will gradually raise the head of your bed every hour. You are catheterized until your bed is completely raised. Once you are up, they help you to the bathroom and check to see if you can pee. The next day, they want you to walk. They give you a walker, take you to the end of the hall to a therapy room and want to see that you can walk up a ramp with your walker and some other things I don't remember. Once us girls were all up, we all visited each other in our rooms. It was so nice to go through this whole experience with friends. We knew we weren't alone and we were stronger by going through it together. While in the hospital, they measure your urine so you have to urinate in a toilet catcher and pour it into a container. That was my least favorite hospital activity. They make you take Miralax every day because inactivity and the pain medications slow down your bowel processes. My incision was two inches right above my butt crack. I think everyone's was two inches, but don't let that little scar size fool you. It was major surgery and those two inches are deceptive. I had steri strips covered with dressing over my incision that they changed daily. The other girls incisions' were closed with glue. I have no idea why the difference.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-h1Mm_ERa1Ts/V9GnDlNE17I/AAAAAAAAOaQ/QzS61fOyh2IYvM-tbMbPMDXvp9sQ_uBAgCEw/s1600/12439522_10153816559944098_1765966550418358459_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-h1Mm_ERa1Ts/V9GnDlNE17I/AAAAAAAAOaQ/QzS61fOyh2IYvM-tbMbPMDXvp9sQ_uBAgCEw/s320/12439522_10153816559944098_1765966550418358459_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vising Mama E. Notice we are all smiling? Good drugs</td></tr>
</tbody></table>
The food was good. No complaints. There was a hospitality room at the end of the hall that had drinks for patients and guests. There was a microwave, refrigerator and coffee pot in there. The nurses would bring me anything that I asked but it was nice when my husband was there because he could go get me drinks right away.<br />
<br />
Another cyster had told me about a therapeutic cold therapy machine that she felt was a life saver. I took it to the hospital with me and the nurses helped me to wear it each day. They left it on 24/7 for the first 24 hours and I think it helped tremendously with pain and I had no swelling at all. I bought the Kodiak Polar Care Cold Therapy Unit. You need a doctor's prescription to order one. However, I found one on ebay for loads cheaper than retail price and bought it without even having to use my prescription. I think I must have either slept or been so drugged up for the first 24 hours because I don't remember much of having to lay flat. I remember the other cysters who had surgery before me coming to visit. Mama E and I had met the evening before surgery and went to the hospital to visit Susan A.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-lH6khaFFFJ0/WwzRF0OdYMI/AAAAAAAAT9s/Wa2PCW-41Lw1I1chwuxWL2899PszZ91zgCLcBGAs/s1600/FB_IMG_1527566399570.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://2.bp.blogspot.com/-lH6khaFFFJ0/WwzRF0OdYMI/AAAAAAAAT9s/Wa2PCW-41Lw1I1chwuxWL2899PszZ91zgCLcBGAs/s320/FB_IMG_1527566399570.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Surgery recovery is much more<br />
fun with friends & Netflix</td></tr>
</tbody></table>
I had a very good experience during my hospital stay and was released the morning of my third day. There was only a tiny reclining chair for a guest to sleep on. There was no way in heck my husband could have slept in that thing and I wouldn't have expected him to. I told him to go back to the hotel to rest up so he would have energy to come back to the hospital the next day. Afterall, I was in good hands and had help if I needed it. I'll go into more detail about surgery instructions, the surgery and share parts of my post-operative report in my next post. </div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com4tag:blogger.com,1999:blog-2723953808291244899.post-7687715897554998142016-09-07T17:12:00.001-04:002018-05-27T18:23:41.603-04:00I've Been a berry bad blogger - 8 Months post-op<div dir="ltr" style="text-align: left;" trbidi="on">
Nope, I'm not dead. Yep, I survived surgery. And, yes, I have been a very, very BAD blogger. I have totally dropped the ball on this one.<br />
<br />
<a href="https://3.bp.blogspot.com/-Lko8_yduccQ/V9CCv5c91YI/AAAAAAAAOZw/yncMjk9IphA28NTgp0YKPUgrc2mp1adWwCLcB/s1600/darren-campbell-quote-im-alive-and-getting-stronger-every-day%2B%25281%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-Lko8_yduccQ/V9CCv5c91YI/AAAAAAAAOZw/yncMjk9IphA28NTgp0YKPUgrc2mp1adWwCLcB/s320/darren-campbell-quote-im-alive-and-getting-stronger-every-day%2B%25281%2529.jpg" width="320" /></a>I am happy to say that 8 months post-surgery, I am FINALLY, for the love of God, seeing progress. It has been SO S.....L.....O.....W. People told me, I read it, and I heard it from other cysters who had the surgery that this would be a long, painful and difficult recovery. I knew this. However, you can't really digest how long 6 months - 2 years of recovery really is until you are in the thick of it. Until this past month, I've still been virtually bed bound due to pain I have if active. Instant pain when on my feet, sitting or standing. The progress that I've made is that now, most days, I can finally get out again, without immediate pain, for roughly 2 hours. After that point, my debilitating pain in my legs returns and back to the bed for me. But, this is progress and I haven't been able to go out without severe consequences in over a year. I still do not drive much. I'm afraid to go more than 5 minutes away from home because I have had severe pain in my right leg from my butt down if my foot and leg are flexed in the driving position. I've only driven a handful of times. We are very blessed that my son's teacher picks him up in the mornings and that my husband gets off of work in time to pick him up after school.<br />
<br />
I have been in touch with my 4 other cysters who had surgery the same time I did. I know we should never compare ourselves in terms of recovery but it seems that everyone else is doing about the same as me, if not behind.<br />
<br />
I've been off of here for so long that I'm not even sure where to start. So, I'll start from surgery next post and explain the procedure, hospital stay and 10 days in Dallas. </div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-37169049117616271832015-12-31T08:29:00.000-05:002018-05-27T21:30:54.618-04:00How Do you Handle Difficult Seasons - Part 4, God keeps performing miracles! <div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoNormal">
This is continuation of my series on Handling Difficult Situations. For Part 3 click <a href="http://tarlovcystjourney.blogspot.com/2015/12/how-do-you-handle-difficult-seasons.html" target="_blank">here</a>.<br />
<b><br /></b>
<b>“I have the strength
within me to get through this.” <o:p></o:p></b></div>
<div class="MsoNormal" style="margin-left: .5in;">
<b>– FALSE. <o:p></o:p></b></div>
<div class="MsoNormal" style="margin-left: .5in;">
<b><br /></b></div>
<div class="MsoNormal">
<i>"It's not what
happens to you. It's what you do with what happens to you.” - Coach Phillip
Fulmer<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>“God is more concerned
about what is happening in me than what is happening to me.” – Christopher R.
Bear<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNoSpacing">
Like players on a football field, we are going to get
knocked down in life. We can count on it! Who will lift us up? The foundation
you have built for yourself, the people in your support system, and where you
look for your strength answers the question. Some people believe their strength
comes from within. Many people claim the power within their inner-self is
enough to overcome life’s challenges and if you can’t find it, you need to
search harder. I can make personal choices on how to approach a situation
mentally, choosing to focus on positive thoughts. Not gonna lie. In past
situations, I’ve tried to face rough patches on my own, through my own
strength, without admitting that I do need God’s help. It didn’t work out for
me. I would feel guilty that I was not tough enough to deal with things on my
own. I felt weak, helpless and lost. I would turn to other people to help me,
but often times, it wasn’t enough. For me personally, I can say, when life sucks,
the most effective way I’ve dealt with difficult times has been when I’ve
relied on a power that comes from something greater than myself. I know there
will be times in life when I cannot stand alone. I will need the help and
support of others God has put in my path and I will have to for my strength and
hope to come from God. My belief and relationship with God gives me hope and
access to a power that can accomplish anything. I cannot imagine going through
something like with without my faith in God to carry me through.<o:p></o:p></div>
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<br /></div>
<div class="MsoNoSpacing">
<i>I can do all this
through him who gives me strength. Philippians 4:13<o:p></o:p></i></div>
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<br /></div>
<div class="MsoNoSpacing">
<i>Now to him who is
able to do immeasurably more than all we ask or imagine, according to his power
that is at work within us, to him be glory in the church and in Christ Jesus
throughout all generations, for ever and ever! Amen. Ephesians 3:20-21<o:p></o:p></i></div>
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<br /></div>
<div class="MsoNoSpacing">
<i>"I have told
you these things, so that in me you may have peace. In this world you will have
trouble. But take heart! I have overcome the world." John 16:33</i><o:p></o:p></div>
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<br /></div>
<div class="MsoNoSpacing">
I’m the type that likes to have a plan for everything.
Having a plan gives me a sense of security and control over a situation. But,
when my plan-train jumps off of the tracks, I freak out. Fear of the unknowns
and “what-ifs” can eat me alive. I start to think of all of the things that
could potentially happen and try to come up with plans for non-existent
problems. In other words, I worry. I feel lost when I don’t know what is next.
My comfortable sense of security and control goes out the window. When I get to
that point, I’m reminded that I am not in control of the world around me. But,
I remember I have access to a higher power that can see me through that has
overcome the world, who gives in ways the world cannot. <o:p></o:p></div>
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<br /></div>
<div class="MsoNoSpacing">
Guess what? God has recently done something AGAIN that is
greater that I could ever imagine or know to ask for. Through one of the online
Tarlov Cyst support groups, I began to develop strong relationships with three
Christian women. We have prayed, encouraged, and supported each other through
this horrible disease and process months before we had our initial
consultations with the neurosurgeon in Dallas. Our appointments were weeks and
months apart. Surgery is usually scheduled based on your consultation date. For
example, there were 23 people ahead of me. <o:p></o:p></div>
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<br /></div>
<div class="MsoNoSpacing">
At first, I found out one friend in Jacksonville was
going to be having surgery the day before me. She is two years younger than me
with two young girls. We were so excited to know we wouldn't be alone and would
have a friend there. But, the blessings didn’t stop there. Another who is a
part of our close circle has been like a mother-figure to me and told me. She
lives in South Florida and called me a few weeks ago and said, "You won't
believe when my surgery date is. The 13th." I thought she was pulling my
leg. "No, seriously, it's the 13th!" That is the SAME day as mine!
So, that to me was God putting the whipped cream and the cherry on top. But, He
didn't stop there!! We are also very close to other sweet lady in Phoenix
Arizona. She began to have complications with her cysts due to a botched
procedure and she needs surgery ASAP. We prayed for her. Guess when her surgery
is? The 11th! We are all going to be in the hospital at the same time!!! Guess
what else? There are MANY hotels in the area. But, we are all going to be in
the same hotel together for 10 days!!!! There will even be another lady there
from my home state of Tennessee too! This is God continuing to show me, "I
am going to take care of you. I am going to show you, I can beat all odds and
nothing is too great for me. I love you and am going to give you blessings
beyond what you could ever imagine or even know to ask for." He did just
that!!! The odds of that happening were so rare, I didn't even ask for that
because it would be nearly impossible for us all to be there with all of the
ladies I am so close to. He not only put the whipped cream and cherry on top
but he added the sprinkles too!!! I'm so excited I get to meet this group of
women. We have all been so close to each other. I'm flabbergasted. We all are.
God is good. He is faithful and always provides for those who trust in Him.<o:p></o:p></div>
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<br /></div>
<div class="MsoNoSpacing">
My main concern about flying to Dallas was that we would
be alone. My mother has been through every major life event I've had and I just
couldn't imagine going through this without her there. She has always been my
best friend, my encourager, my spiritual adviser, the one I go to for wisdom
and advice. But there was no way my parents could make the trip and take care
of the boys too. I didn't know if I could go through this without her there
beside me. But, God took care of that for me too. He put these women in my life
and is going to take care of that need for me. We will be there among friends.
Not just any friends, but strong women of faith who can fulfill the same roles
that I seek from my mother. <o:p></o:p></div>
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<br /></div>
<br />
<div class="MsoNoSpacing">
How do you approach life? Is it about what you can get
out of it or about giving to something greater than yourself? I’ll be honest.
I’m guilty of the first. I can’t see beyond my own circumstances sometimes. But,
things work out better when I ask God how He wants to use me for His greater
purpose instead of mine. Who will lift you up when you fall? What are you going
to do when the bad seasons hit? This year, my New Years Resolution is to remember to turn to God when things get rough.<o:p></o:p></div>
</div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-1079785905560835232015-12-16T13:57:00.000-05:002018-03-07T09:26:07.546-05:00How Do You Handle Difficult Seasons. Part 3 - True or False<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoListParagraph" style="margin-left: .25in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
Continuing on in the series of <a href="http://tarlovcystjourney.blogspot.com/2015/11/how-do-you-handle-difficult-seasons-why.html" target="_blank">difficult seasons</a>, here is another phrase we commonly hear and contemplate. Is it True or False? These are just my opinions. Always subject to change as does my walk with Christ.</div>
<br>
<div class="MsoListParagraph" style="margin-left: 0.25in;">
<!--[endif]--><b>“That which does not kill me makes me
stronger.” <o:p></o:p></b></div>
<div class="MsoNoSpacing" style="margin-left: .75in; mso-list: l1 level1 lfo3; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>TRUE <o:p></o:p></b></div>
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<br></div>
<div class="MsoNoSpacing">
At some point in everyone's life, we will face a challenge where we say, "God I can't handle this." In the midst of the darkness, we can’t see through the
clouds. In the middle of suffering, it can be reassuring and both annoying to hear it "will make us stronger." But, after the storm, the clouds go away and we can see clearly. During
the storm, our faith is tested. But, through that storm, we grow. The
unfortunate part is that growth is not an instant process. Just as we grow from
children to adults, it takes time. And it’s on God’s timeline, not our own. <o:p></o:p></div>
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<br></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: .75in; mso-add-space: auto; mso-list: l2 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]--><i>We don’t
yet see things clearly. We’re squinting in a fog, peering through a mist. But
it won’t be long before the weather clears and the sun shines bright! We’ll see
it all then, see it all as clearly as God sees us, knowing him directly just as
he know us! - 1 Corinthians 13:12<o:p></o:p></i></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto;">
<br></div>
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<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]--><i>But he
said to me, “My grace is sufficient for you, for my power is made perfect in
weakness.” Therefore I will boast all the more gladly about my weaknesses, so
that Christ’s power may rest on me. That is why, for Christ’s sake, I delight
in weaknesses, in insults, in hardships, in persecutions, in difficulties. For
when I am weak, then I am strong. – 2
Cor 12:9 - 10<o:p></o:p></i></div>
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<br></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]--><i>… but we
rejoice in our sufferings, knowing that suffering produces endurance, and
endurance produces character, and character produces hope, according to his
purpose – Psalm 41:3</i><o:p></o:p></div>
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<br></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]--><b><i><sup> </sup></i></b><i>After you have suffered for a little
while, the God of all grace, who called you to His eternal glory
in Christ, will Himself perfect, confirm, strengthen and establish you. To
Him be dominion
forever and ever. Amen. – 1 Peter 5:10-11<o:p></o:p></i></div>
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<br></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]--><i>“the
testing of your faith develops perseverance. Perseverance must finish its work
so that you may be mature and complete, not lacking anything” James 1:3-4<o:p></o:p></i></div>
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<br></div>
<br>
<div class="MsoListParagraphCxSpLast" style="margin-left: 0in; mso-add-space: auto;">
There
are several things that jump out at me from those verses above. “It won’t be
long before the weather clears and the sun shines bright.” My
storm will not last forever. “My power is made perfect in weakness.” God’s work
within us is seen the most when he transforms weakness into strength. “suffering
produces endurance…character…hope.” When
we go through storms in life, we grow. Testing our
faith produces “perseverance.” But, that perseverance won’t finish until we are
“mature and complete.” In other words, God will continue to work in us on His
timeline, not our own, until He is finished accomplishing what He wants to
within us. During our storms, tornadoes, hurricanes, tsunamis, whatever you
want to call them, we might question God. We might wonder if He has turned His
back on us because we may not see or feel Him at that time. But we must
remember that no matter what, God’s hand is still with us and His power makes
us strong! We are not alone in our growth process. He wraps His loving arms
around us and carries us when we cannot walk. <o:p></o:p></div>
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<br></div>
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Many of us have heard the phrase, "God will never give you more than you can handle." As far as I've been able to tell, that popular phrase isn't anywhere in the Bible and I'm pretty certain it's not. It leaves out an important factor. We aren't meant to handle "more" alone. I think the truth is, the things that do not kill us, CAN kill us without God. If we don't turn to God and ask for His strength to endure it, we may not get through it. God does promise us many times that He will never leave us and that, through Him, we can become stronger and overcome the world. </div>
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<a href="http://1.bp.blogspot.com/-fxQXx4wM9aY/Vmxv0vIQNyI/AAAAAAAAMqs/ukBwfcL5dOQ/s1600/f558b154bddb3b8f98734cf6c6eca74c.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br></a><a href="http://1.bp.blogspot.com/-fxQXx4wM9aY/Vmxv0vIQNyI/AAAAAAAAMqs/ukBwfcL5dOQ/s1600/f558b154bddb3b8f98734cf6c6eca74c.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="241" src="http://1.bp.blogspot.com/-fxQXx4wM9aY/Vmxv0vIQNyI/AAAAAAAAMqs/ukBwfcL5dOQ/s320/f558b154bddb3b8f98734cf6c6eca74c.jpg" width="320"></a></div>
<ul style="text-align: left;">
<li><i>He gives power to the faint, and to him who has no might he increases strength. Isaiah 40:29</i></li>
</ul>
<ul style="text-align: left;">
<li><i>Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. 2 Cor 1:9</i></li>
</ul>
<div class="MsoListParagraphCxSpLast" style="margin-left: 0in; mso-add-space: auto;">
There is a verse that relates to what temptations God will allow to test our faith. But, this refers to sin, a choice, rather than trials, something we have no choice over. </div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 0in; mso-add-space: auto;">
</div>
<ul style="text-align: left;">
<li><i>Therefore let him who thinks he stands take heed that he does not fall. No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it. 1 Corinthians 10:13</i></li>
</ul>
<div>
I can look back at any times in my life, where I have weathered storms. I wish my current self could travel back in time and tell my old self, "You are going to be o.k. You WILL get through this." The things that have not killed me, have made me stronger through the power and provision of God.<br>
<br>
Tune in for <a href="http://tarlovcystjourney.blogspot.com/2015/12/how-do-you-handle-difficult-seasons_31.html" target="_blank">part 4</a> of this series. </div>
<div>
<i><br></i></div>
</div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-48427564273421587672015-12-13T16:07:00.001-05:002015-12-13T16:07:32.651-05:00A Great Morning<p dir="ltr">I just had to say, I've had one of the best 4 days in 6 months today. There has been no rhyme or reason for it. I've done nothing differently. I woke up without pain, was able to eat downstairs and watch a movie, then wrap some Christmas presents. I had ZERO pain until around 3:30. At most, the afternoon is when I reach the point where I can't tolerate my pain, not when it starts. </p>
<p dir="ltr">I found out that my Sunday School class prayed for me this morning. The half of the day without any pain is a miracle in and of itself and I am so thankful for the time I was allotted to resume normal life activities. I can only attribute this blessing to the power of prayer. It works! Thank you Lord!</p>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-12080506946729953622015-12-10T19:30:00.000-05:002015-12-10T19:36:55.918-05:00Shut up and Ride the Pig<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-TZ_QRpoB_dc/VmoAD0i_jdI/AAAAAAAAMps/T-JC5ioGres/s1600/Grumpy-Cat.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="225" src="http://3.bp.blogspot.com/-TZ_QRpoB_dc/VmoAD0i_jdI/AAAAAAAAMps/T-JC5ioGres/s320/Grumpy-Cat.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Piriformis Steroid Injection (Round 2)</td></tr>
</tbody></table>
The last steroid injection I had into my right piriformis muscle was awesome...for the 3 days it lasted. But, oh, how nice those three days were! I returned to the pain management doctor this week and asked if he could try it again. Maybe another dose, a different steroid, crossing his fingers while inserting the needle? You know, anything to see if it might work longer. Well, this time, the results were . . . nothing.<br />
<br />
<a href="http://4.bp.blogspot.com/-Qt9_U_APWXQ/VmoG1kjFVsI/AAAAAAAAMqI/1bwTWsvOh8I/s1600/that%2Bdidn%2527t%2Bwork.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-Qt9_U_APWXQ/VmoG1kjFVsI/AAAAAAAAMqI/1bwTWsvOh8I/s320/that%2Bdidn%2527t%2Bwork.jpg" width="214" /></a>I was skeptical as soon as I woke up from the anesthesia and put my foot on the ground. The lidocain in the injection offers some temporary relief. Last time, when I walked out of the doctor's office, I could tell something was wonderfully different. Unfortunately, I didn't have that same relief signal this time. I (im)patiently waited for it to kick in, because it can take a few days. However, no relief ever came. So, yeah, I'm a little bummed out. I was expecting at least the same pain relief that I had from my last one. Those high expectations in my head, lead to disappointment.<br />
<br />
The doctor did give me another dosage on the new pain medication he wants to switch me to, Nucynta. The 100mg definitely works! No questions about it. Forgive me if I slur my typing.<br />
<br />
Like I have said, the nature of this disease is it's unpredictable character. What used to make sense, doesn't anymore. I used to be able to predict that I would have pain after such and such activity or amount of time. I usually, around 70% of the time, feel my best in the mornings. But, when the weather changes, or if I've gone to an appointment, I might wake up with it the next day. Good Morning Gorgeous. Used to be, as the day would go on, I would find myself hitting an intolerable peak around 3:00 or 4:00 in the afternoon, at which time I had to take my pain medication. However, this past week, the pain decided that we weren't spending enough time together. He made the executive decision to rearrange our schedule without telling me. Rude!! Rather than meeting our typical time, around 3:00 or 4:00 pm, he just randomly showed up at lunch time and informed me that we would now be seeing each other earlier and spending the rest of the day and evening together. I'm feeling a little stifled and smothered in this relationship. I think we are moving way too fast and I'd like some space. I've dropped hints but he just doesn't get it and now he won't go away. <br />
<br />
Why the increase in time span, aside from the fact that I have an irresistible magnetic personality? I have no idea. I haven't done anything different. Sure, the weather is cold and that can impact my inflammation, but it hasn't been as crazy sketchy. No rhyme or reason to it.<br />
<br />
This week I was incredibly blessed by a sweet friend from church. She came over Wednesday morning and brought lots of goodies. She brought me a peppermint mocha from Starbucks (Oh, I miss those. I used to get them everyday after I dropped my youngest off at preschool,) and an awesome pastry. She also brought us a fabulous dinner of soup with homemade mini cheddar muffins and some cupcakes for dessert! She even insisted on helping by cleaning our kitchen. I am still having a hard time accepting that I am at the point where I do need help from people outside of my family circle. But, for the sake of my husband and family, I've started saying yes when someone offers. The best part of her visit was that she came and sat in bed with me and we chatted for awhile over our coffee. Face to face socialization is a scarce commodity these days. A friend who will come sit with you in bed is super cool.<br />
<br />
I'm not just dealing with physical pain. I'm also combating my fear of the pain. I am terrified to do anything that might aggravate it. It definitely worsens with activity and feels better when I'm lying down, which is typical for people who have Tarlov Cyst Disease. (Pain when walking, sitting, standing.) Exercise, physical therapy, and moving around doesn't help TCs. It makes the pain worse. Resting = less pain. So, don't go telling anyone with TCs, "Maybe if you exercise it would help." Or, "Maybe you just need to walk outside some." "Have you tried a chiropractor?" "Have you tried physical therapy?" "Have you tried stretches?" Thank you for the intention of trying to help, But, please people. Stop. I know about my disease. I know my body. I know what I want from life and sitting in my bed all day isn't it.<br />
<br />
Because I know activity will worsen my pain, I don't even get out of bed unless it's a necessity. I will only get up for things such as bathing, going to the bathroom, grabbing some food or a drink, or helping my oldest with a quick something. Doctor appointments and Aquatherapy days (I've already missed 2 ATs because I couldn't go) scare me to death and cause me quite a bit of anxiety. Not because I'm afraid of needles or whatever, but because I am afraid of that dark black cloud, looming over my head that just can't wait to pour a monsoon of pain upon me. We have a mini-fridge in our upstairs bathroom and a cabinet where I can store and stash snacks and food. When I'm hurting very badly, if I haven't eaten lunch and I'm starving, I will choose the starving over having to go downstairs and fix myself something to eat. (Yes, for real). So, the unhealthy quick and easy grab meals (like lunchables) are what I eat when I'm at home by myself during the day.<br />
<br />
For people who have never experienced chronic pain on an intense level, this is probably hard to understand or believe. But, it's real I tell ya. I find strength through connecting via Facebook with my other TC friends from around the world. They share the same pain and understand. They also live with a giant anvil dangling over their heads by a piece of dental floss. The chord will most certainly break and the anvil will hit you, but you just don't know when it's going to happen. <br />
<br />
<a href="http://3.bp.blogspot.com/-LUMG1QyIRAU/VmoWfHzKi9I/AAAAAAAAMqY/3fUiy4Eny5w/s1600/grumpy-pony-meme.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="168" src="http://3.bp.blogspot.com/-LUMG1QyIRAU/VmoWfHzKi9I/AAAAAAAAMqY/3fUiy4Eny5w/s320/grumpy-pony-meme.jpg" width="320" /></a>So, I guess I'll just have to settle for pain medication. Steroid Injections are not looking like a helpful alternative, as much as I wanted them to. I forgot something very important this time. Don't have any expectations. I'm going to have to prepare myself mentally for the same attitude towards surgery. Don't have any or you'll get disappointed. Don't have any and you might be surprised. I was hoping for a pony, but I got a pig. So, I'll just have to take what gets handed to me and ride along.<br />
<br />
<br /></div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com3tag:blogger.com,1999:blog-2723953808291244899.post-69850527121317406012015-12-05T11:04:00.002-05:002015-12-05T11:08:25.421-05:00I have a date!<div dir="ltr" style="text-align: left;" trbidi="on">
Last week I got a call from Peg at Dr. Feigenbaum's office and we have the green light from my insurance to proceed with surgery! For the past two months, I've tried to put it out of my mind and forget about getting that call. Otherwise, I'd be driving myself crazy waiting. It was a great surprise. Then, this past week, the nurse Katie called and scheduled my surgery! It will be January 13th.<br />
<br />
We booked our flights for the 12th - 22nd, our hotel and our car. We should be good to go! We booked an extended stay hotel with a kitchenette and living room for more space. I have three special friends in Dallas I can't wait to see again. Two cysters from Dallas and a childhood friend. I also found out some great news. Another cyster I have bonded with online from Jacksonville has her surgery scheduled the day before me! She is only two years younger than me and has two young daughters. My oldest and her youngest are only 3 months apart! Our follow up appointments are even on the same day! It's been great talking to her and we both feel so much stronger knowing we will have a friend there going through the same thing at the same time. We hope to visit each other in the hospital if possible, but we are trying to book the same hotel so we can see each other (even if it means hobbling down the hall on a walker and relaxing in bed) during our recovery period. God is good!<br />
<br />
It feels so relieving to finally have a date. Mom will be living at our house with the kids while we are gone and probably for 5 weeks post-op as well. At least since my surgery is before Christmas, I should be able to spend more family time than will be possible after surgery.<br />
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More good news. We hired a housekeeper which is a HUGE help. I've had several friends from my son's school, church, and neighborhood offer to bring us meals. They've offered for several months but I've always declined because, while we are getting by right now, it's going to be much worse after surgery and that is when we will need the most help. But, we finally had to admit to ourselves that, yes, we do need help right now. Church friends are going to help bring us some meals once a week. I asked for once a week because I don't want people to get burned out after surgery. Praise God for the wonderful friends and support system He has placed in our lives.<br />
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Still working on my part 3 of Difficult Seasons. It's really caused me to pause and reflect on my beliefs and how I handle adversity. Taking some more time than I anticipated but I promise it's still coming!<br />
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Thank you friends who have been keeping up with me and continuing to pray for me and my family. </div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-46730266464229038802015-11-28T15:59:00.000-05:002015-11-28T16:05:31.511-05:00The Cut That Killed Me<div dir="ltr" style="text-align: left;" trbidi="on">
Well...I had planned on posting my part 3 of <a href="http://tarlovcystjourney.blogspot.com/2015/11/how-do-you-handle-difficult-seasons-why.html" target="_blank">Myths and Facts about Difficult Season</a>s, but life just hasn't worked out for that yet.<br />
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This past week was great because both of my kids were out of school and pre-school so I spent Monday through Thursday at my parents house with them. It was the first time in over 6 months that the boys and I had been together for more than two nights. My nurturing Mom took care of me and some Mama loving and comfort food made me feel so uplifted. I spent my time in bed at their house, but it was still good to have a change of scenery and be with the family. I was even able to eat dinner at the table with everyone one night.<br />
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I had to go to the pharmacy to pick up a prescription on Wednesday. Since I don't drive anymore, Mom drove me. While I was getting dressed, I looked in the mirror and realized how long my hair had gotten. Now that I think about it...I can't even remember how long it's been since my last hair cut. I've been in bed for 6 months, so it had to be longer than that. I vaguely remember getting a haircut sometime around May. It was a ghastly sight! I had a major hair emergency! That stuff was out of control and needed to go to the salon ER immediately!<br />
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We went to one of those quick in and out places, thinking that would be easier. Sat for 30 minutes. I was hurting by the time I left but I was so happy to leave with a fresh haircut. It was the first time I had worn make-up in forever, so I actually felt like a real person when I left. At least I looked like one. I bet you can guess how this story is going to end.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-A_c32sOw2CQ/VloUCyZQ0LI/AAAAAAAAMhs/ISMXNoemufE/s1600/PicsArt_1448511933748.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-A_c32sOw2CQ/VloUCyZQ0LI/AAAAAAAAMhs/ISMXNoemufE/s320/PicsArt_1448511933748.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Cut that Killed Me</td></tr>
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The pain started that night and grew like Jack's giant beanstalk that didn't stop. That tiny bean, getting a hair-cut, turned into a giant flare up. Wednesday night was bad, but not too bad. Around a 7 on the pain scale. Thursday, Thanksgiving Day, was a completely different story. My pain woke me up at 5-something am. I was writhing, squeezing, and rubbing my legs to try to lessen it. I took a Norco and a muscle relaxer, went back to sleep, and woke up later in even worse pain. My butt, hips and legs were very angry at me. I went to the kitchen to make myself breakfast and coffee and my legs and arms were shaking. I was having muscle spasms and twitches. I was weak. I could barely walk. That day kept snowballing and by that evening, I was an 8-9 on the pain scale. When the Thanksgiving meal was ready, I went into the kitchen with my family and prayed with them. The pain was so bad that it was all I could do to stand up. I had to tell them I wouldn't be able to join them at the table for our Thanksgiving Meal because I was in too much pain to sit. Everyone was very understanding. My legs and body shook while I weakly made myself a plate and returned to the bedroom, where I ate my Thanksgiving dinner alone.<br />
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The next day was better. Since we were at my parents' house and the kids had someone to keep an eye on them, my husband and I got to have some rare uninterrupted cuddle time and watch some movies together in the bed. It was great.<br />
<br />
So, I thought at the time that haircut was a good idea. I think it was, but it was the wrong timing to try something like that. I wasn't prepared for how difficult that little trip would be for me. I forgot my butt pillow, which didn't help while sitting in the car and at the salon. But, the backlash of that haircut stole my Thanksgiving away from me. It was just as bad as my pain when we flew to Dallas to see Dr. Feigenbaum. Note to self: Don't go out before you have something important coming up. Now you know why this was titled "The Cut That Killed Me." <br />
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-22163637382486682222015-11-20T10:33:00.002-05:002015-11-20T10:39:43.770-05:00Return to Pain Management - Shots and Meds<div dir="ltr" style="text-align: left;" trbidi="on">
This past week, I returned to my pain management doctor. I was terrified. Due to a mental health condition that I have, the psychologist who did the pre-screening told me that I am automatically a moderate risk for being prescribed opioid pain prescriptions. The fact that I have been stable for 13 years and have no history of drug abuse or addiction does not play a factor into this. As I've mentioned in my previous posts, I've tried everything I can to manage my severe pain. Sometimes the traditional treatments help, but when the pain is at its worse, nothing helps me have relief except for opioids. I was terrified when he told me this.<br />
<br />
I asked both my psychiatrist and my pain management doctor if that was true and if it meant they wouldn't treat me with opioids. They both told me, in many cases, doctors will not. So, if I had cancer, would they not? I understand each patient must be pre-screened by law, but it seems cruel and scary to me that they would deny medication to someone who really needs it. (Due to my health condition, I also can't take oral steroids.) Isn't the whole point of a pain management doctor to monitor your medication and safely wean you off of them when you don't need them? Research has shown that people who suffer from chronic pain have shorter life-spans and are at higher risk for suicide. I was so afraid. I prayed and asked others to pray for me that I would receive the treatment I need. I don't know how I could survive without it.<br />
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God answered my prayers. The doctor looked at my pre-screening evaluation and agreed to treat me. I explained to him everything I try to do before I reach for that bottle. I told him I'm scared to death of dependency and he said, "Good! You should be!" Even though they didn't ask for it, I took my bottle of medication in and asked them to PLEASE count it! I wanted them to see that I am NOT abusing my medication. Let there be no doubt! I've been on them for 5 months now and so far, no problems. I don't care if they want to count my pills and drug test me every month. People who suffer from severe pain will do almost anything or relief. (For me, I mean anything within reason.) But, I am still very cautious with those pain pills. They scare me.<br />
<br />
My pain varies from day to day. I'm learning that the stupid weather can make the inflammation worse when it gets cold. In Tennessee, the weather is psychotic. Seriously. The past two weeks, we've had a freeze warning and temperatures in the low 70s in the same week! Those days when the weather is nutso, it hurts. And, just found out, that is typical for people with symptomatic TCs. Great! Another variable to add to my pain! YAY!<br />
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<tr><td class="tr-caption" style="text-align: center;">Piriformis Muscle</td></tr>
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My TCs are pressing on the nerves that trigger my piriformis muscle when it's not supposed to. This has caused that muscle to become rock hard and cause a lot of pain. The pain also radiates down my leg. At my last visit, I asked the PM Dr. if there were any kinds of injections he could do into the muscle that might help. YES! Yesterday I had steroid (depomedrol) injections all the way down the piriformis in my right side. When I woke up, the pain was GONE from the lidocaine that was also in the injection. I immediately noticed how much my left side hurt. I'm sure this was because I didn't realize it before and was noticing the worst source of the pain. It's only been 2 days, but so far there seems to be a difference and I'm optimistic. But, the weather hasn't been going crazy either. So, Piriformis injection effectiveness - TBD. I'll update this post later and let you know.<br />
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The doctor made two changes to my medications. He switched me from Zipsor (Diclofenac) to Celebrex (Both NSAIDS). Lots of different factors playing into this short time, but I've noticed a change in the past two days and have had to take less pain medication. He also switched my pain medication from Norco to Nucynta. This drug isn't out in generic yet. My insurance covers it, but it's still $100! It's crazy expensive. But, in lieu of the Norco, I have taken it and it worked even better at the smallest dose. Weather? Meds? Injections? All TBD. But, thank you God for allowing the Dr. to treat me with the medication I need!<br />
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-34263114393507012592015-11-20T09:50:00.000-05:002018-03-07T09:13:32.051-05:00How do you handle difficult seasons? Why do they happen? - Part 2 True or False<div dir="ltr" style="text-align: left;" trbidi="on">
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In today’s post, I’d like to continue discussing how we can
handle difficult seasons. Our outlook and attitude makes all of the
difference. </div>
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<o:p></o:p></div>
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Everyone, at some point in their life, faces difficult
circumstances where they question if they will make it through their struggles.
Loss of a loved one, depression, illness, illness of family members, cancer,
divorce, financial difficulties…so many things. Many popular phrases pop up when people are
going through hard times. On the surface, they sound good, but I’ve
internalized these statements and have developed my opinions about them. <o:p></o:p></div>
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Ready to play Natalie's version of True or False?<o:p></o:p></div>
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<!--[if !supportLists]-->1.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>“Everything
happens for a reason.” </b><o:p></o:p></div>
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<b>- FALSE.</b> Often, yes. But not always. <o:p></o:p></div>
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I think that phrase is bull that to make ourselves feel better. God <u>does</u> has a greater plan and purpose for our lives. Something greater than ourselves that we often don't understand. I don't believe that everything
that happens is always the will of God. When we suffer, we get angry and ask,
“Why God? Why? Why me?” Our human nature wants to believe that there is a
reason for these things. We want answers. But, I don’t believe there always
are. However, I do believe that <b>God can use
anything that happens for His purpose. He can transform our struggles and make
blessings come out of them. </b><o:p></o:p></div>
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<i>Can anything ever separate us from
Christ’s love? <u>Does it mean he no longer loves us if we have trouble or
calamity,</u> or are persecuted, or hungry, or destitute, or in danger, or
threatened with death?</i> ... <i>Neither death
nor life, neither angels nor demons,<sup> </sup>neither our fears for today nor
our worries about tomorrow—not even the powers of hell can separate us from
God’s love. No power in the sky above or in the earth below—indeed,
nothing in all creation will ever be able to separate us from the love of God
that is revealed in Christ Jesus our Lord.
– Romans 8:35, 38-39.<o:p></o:p></i></div>
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We don’t always get the answers we want from our prayers. Does that
mean it’s “God’s will” that bad things happen? Does that mean He doesn’t hear
our prayers or has left us? I don’t believe so. The love of God is always with us, even when
we don’t see it or feel it. For believers, we have access to His power and
provision. NOTHING is impossible for God. He can create blessings from our
tragedies. <b>He can transform our pain to bless others by providing encouragement to
others. <o:p></o:p></b></div>
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<i>Blessed
be the God and Father of our Lord Jesus Christ, the Father of mercies and God
of all comfort, who comforts us in all our tribulation, that we may be able to
comfort those who are in any trouble, with the comfort with which we ourselves
are comforted by God. - 2 Corinthians 1:3-4 (Thank you Anne for that one!)<o:p></o:p></i></div>
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A
blessing that has come from my being stuck in bed is that it’s allowed me to slow
down and focus on my spiritual life. During our busy and happy times in life,
it takes a commitment to do that. I’ll be honest, I wasn’t making much of an
effort to do that before. Even though He never leaves us, it still takes effort
on our part to seek Him. When we pray, we should also silently listen. Phrases
and verses have popped into my head before when I’ve sat quietly. I can’t count
how many times in my life I’ve sat in tears and begged God to help me. I would
take out my Bible, open it wherever, and there would be a verse on that very
page that spoke to me. And, I don’t mean just some random verse that would
apply to anyone at any time. I mean a verse that was specific to my situation.
A feeling of peace and calm would come over me and I knew it was God wrapping
His arms around me. When things like that happen, it strengthens my faith and
brings me closer to God.</div>
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In <a href="http://tarlovcystjourney.blogspot.com/2015/12/how-do-you-handle-difficult-seasons.html" target="_blank">part 3</a> of How do you Handle Difficult Seasons, we will examine another "True or False" statement.<br>
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<span style="background-color: white; color: #333333; font-family: Roboto, arial, sans-serif; font-size: 13px; line-height: 18.2px;"><b>Follow up:</b> I feel the need to share one of the recent situations about the random Bible plop open. There was a time when I was reading some things on a Facebook forum. People were saying scary things and were very negative towards the doctor who treats this disease. I began to have doubts. Normally, I don't read much of the old testament unless it's Psalms, Proverbs or Job. My random plop open verse was where I had stuck my prayer list in my Bible so I wouldn't lose it, and it was in the Old Testament. This is what it said: </span><br>
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“And you, son of man, do not be afraid of them or their words. Do not be afraid, through briers and thorns are all around you and you live among scorpions. Do not be afraid of what they say or terrified by them.” Ezekial 2:6</div>
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<br>That's the kind of situations I'm talking about. Out of how many pages and verses there are in the Bible, it was no "coincidence" that that verse was there. God has a message for me, reassuring me and erasing all of my doubts and fears. He reminded me that I am on the right path and not to question His plan that had already been revealed to me. </div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-17450075201289605972015-11-14T15:34:00.005-05:002018-05-27T20:55:37.756-04:00Difficult Seasons - Part 1<div dir="ltr" style="text-align: left;" trbidi="on">
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<b>How do you handle
difficult seasons? Why do they happen? -
Part 1<o:p></o:p></b></div>
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Even though I’ve been going through a difficult time with
pain and my life being turned upside down, I’ve been in good spirits. Don’t get
me wrong. I’ve had a few pity parties along the way. But, then I move on. Mark
my words. Someday, I’m going to have to come back and read my own words. It’s a
struggle to stay positive and I know at some point I will have times when I
will have to refocus. <o:p></o:p></div>
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You’ve probably heard the parable of the two wolves. Inside
me there are two. The black one is viscous and mean and wants to destroy
everything. The white wolf is filled with love and joy. Which dog wins in
the fight? The one I feed the most. Feed your mind with positive thoughts. <o:p></o:p></div>
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<b>Here are a few things I’ve been doing to help me. <o:p></o:p></b></div>
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<b>1. Making a list of my blessings.</b> No matter how bad
things seem, by choosing to focus on the things I do have, it helps me to not
sit around and focus on the negative. When I start to dwell on my problems, I
get my blessings list out and remind myself of what I DO have. No matter how
bad things get, they could always be worse. I remind myself that other people
are struggling with diseases that are more serious than mine. Others face
mountains of challenges that make mine look like molehills. These are the
things I thank God for. <o:p></o:p></div>
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<a href="http://2.bp.blogspot.com/-aYmg0t-uEJA/VkeVgBPkQBI/AAAAAAAAMWw/xhNUFl29okk/s1600/laughter-is-the-best-medicine-except-for-treating-diarrhea.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="224" src="https://2.bp.blogspot.com/-aYmg0t-uEJA/VkeVgBPkQBI/AAAAAAAAMWw/xhNUFl29okk/s320/laughter-is-the-best-medicine-except-for-treating-diarrhea.jpg" width="320" /></a><b>2. Laugh.</b> Laughter is proven to help people in pain. Watch
funny movies. Laugh with your kids. Laugh at your pet. Be around people who
make you laugh. Whatever works for you.
Look back on things that have happened and laugh about it! Here’s a
great example! I once saw someone who has to use a walker due to her condition. So, she dressed up as an old woman for Halloween and walked around
with their walker! <o:p></o:p></div>
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<b>3. Making a list of people who I can pray for who are also struggling.
</b>Sometimes this disease feels isolating. Praying for others who are also in need
helps me to turn my focus away from myself and dwelling on my own problems. I’ve
seen God working in my situation and He can do the same for others. I am
blessed to have so many people praying for me and I know without a doubt that there is power in prayer. When
I pray for other people, it blesses me as well. If you have a different belief
system, meditate and send them positive energy. <o:p></o:p></div>
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<b>4. Making a journal of the things I’ve seen God do and when He
has spoken to me.</b> If this doesn’t apply to you or you have not experienced
this, make a list of things that have happened that were beyond your control,
but helped you. When we are going through pain, it’s like a dark cloud that
surrounds us. Sometimes we can’t see outside of it and we forget the past. It’s
easy to forget the times when we have felt God’s presence and heard his voice
in our hearts. When things are
overwhelming, I take out that list and it reminds me that God is with me and He
is faithful. <o:p></o:p></div>
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<b>Stay tuned for <a href="http://tarlovcystjourney.blogspot.com/2015/11/how-do-you-handle-difficult-seasons-why.html" target="_blank">part 2</a>
of this series where I will discuss truths and myths about going through
difficult times. <o:p></o:p></b></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-76185234048995328052015-11-07T14:34:00.000-05:002015-11-08T10:00:55.598-05:00Whatever Works<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday I had my first aquatic physical therapy session. I have to admit, I was scared to death. Scared to ride in the car. Scared to be on my feet. Scared to be moving. Unsure if this was going to be something where they would be strapping weights to my legs and doing who knows what. Some days it seems I can be on my feet for 45 minutes and be ok. Others, if I'm on my feet even 10 minutes I have a severe backlash. This past week, I woke up in pain when the weather changed. The unpredictability of this is what terrifies me. Was this going to help me or kill me?<br />
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The purpose for my therapy isn't for aerobic or strength training. It's actually pretty simple. Just move! The physical therapist told me, "Don't over do it, don't push too hard. Listen to what your body tells you. If it hurts, take a break." I found I got a lot more relief in the deep end of the pool because it took pressure off of my body. I did simple exercises like slowly moving my legs in a bicycle motion. For some reason, no matter what I did, my lumbar area hurt. But, I was still moving.<br />
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The water gave me goosebumps and when I got out of the pool...KABLAM! Instant pain! I felt like I was being squished by gravity! I went straight to the hot tub, which helped my body warm back up and relieved things. When my body is cold, the pain is worse. When it's warm, it feels better. I left hurting in my lower back and my right leg developed that familiar nerve pain. It worsened as the afternoon went on. I want to be active and do SOMETHING. I guess the jury is still out on whether or not it is going to worsen my pain or not. But, it did feel good to be out of the house and actually moving. . . even if it was slower than a sloth. And, at this point, I'm up for whatever works. Lots of TC patients have had beneficial results from aqua therapy, so I'm giving it a try!<br />
<br />
Nothing makes the pain completely go away for an extended period of time. But, in my attempts to alleviate my pain through traditional methods, I have found a few things that help. All of these things can be purchased through amazon, but can also be found in local stores.<br />
<br />
I'd like to state that<b> NO companies have contacted me or asked me to review their products.</b> <b>I am not being paid or given free stuff.</b><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-seQKrYYNR2U/Vj5MkvYp7vI/AAAAAAAAMPY/yWL4y-WkeHw/s1600/20151107_131758%2B%25283%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="252" src="http://4.bp.blogspot.com/-seQKrYYNR2U/Vj5MkvYp7vI/AAAAAAAAMPY/yWL4y-WkeHw/s320/20151107_131758%2B%25283%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Arsenal</td></tr>
</tbody></table>
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<b>1. <a href="http://www.tensunits.com/" target="_blank">TENS unit</a>.</b> I place my TENS unit on my sacrum for about 15 minutes. Sometimes I put the electrode patch on my lumbar area and piriformis muscle since that is where a lot of my muscle pain occurs. I've been told by Dr. Feigenbaum, the Tarlov Cyst Foundation and the Pain Management doctor, that TCs can compress the nerves that activate the piriformis when it's not supposed to. Hence, the nasty knot in my butt. The TENS unit provides some temporary relief. Sometimes I have muscle spasms and it also helps with those.<br />
<br />
<b>2. <a href="http://twooldgoats.com/" target="_blank">Two Old Goats Lotion</a>.</b> Yeah, I know. How could a lotion really help that much? I've tried prescription lidocain creams, etc. and for some reason, nothing helps like this stuff. It is loaded with essential oils and I can notice a decrease in my pain level shortly after applying it. FOR REAL!<br />
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<b>3. Ice on my sacrum.</b> I hate ice. I hate cold. But, the cold on the sacrum reduces the inflammation of the nerves and surrounding areas. I put a thin washcloth or paper towel directly on my skin and put the ice pack directly over that. Hold in place with underwear and pants for 15-20 minutes and lean back so it doesn't move. Or, lay down on it.<br />
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<b>4. Heating pad on my lumbar area</b>. I usually like to do this simultaneously with the ice, since it balances out the freezing cold that I hate.<br />
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<b>5. <a href="http://www.amazon.com/Memory-Cushion-Comfortable-Sciatica-Included/dp/B00TER5ZGE" target="_blank">Tushy Cushy </a>for sacral and coccyx pain.</b> I have the memory foam version. Since there is quite a bit of pain with sitting, this helps relieve some of the pressure. The nice little hole allows and opening for your tailbone to sit on. I will admit, it doesn't help me all the time all day long, but my butt thanks me when I use it rather than when I don't! It's advertised to relieve lower back pain and sciatica, but . . .hey, whatever works, right?<br />
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<b>6.</b> <a href="http://naturalvitality.com/natural-calm/" target="_blank">Natural Calm</a>. This stuff is amazing. I've taken many forms of magnesium before, but none have been as effective as this. Magnesium is great for supporting muscles and nerves. The magnesium balances out your calcium level, which results in . . . calm! I can tell an immediate result in my relaxation level and stress. On to the stinky part about whey this stuff is great . . .One of the symptoms many TC sufferers have is constipation. I told you it was stinky! This is caused not only by the cysts but is also a side effect of some medications. Since I've started this stuff . . . NO problems! Everything came out great, if you know what I mean. Also, I spoke to several doctors and you cannot hurt yourself by taking too much magnesium ORALLY. Anything that your body doesn't need, it pees right now. However, if you do try this stuff, <b><u>follow the directions</u></b>. Build up slowly. If you take too much, you WILL have the hershey squirts. Of course, I wouldn't know anything about that first hand. I'd never do something like that!<br />
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<b>7. Essential Oils. </b>A few TC cysters gave me some tips on the benefits of essential oils and I have found that they do help with my pain. Anything from nerve pain, muscle pain, tension, stress and insomnia. I am in the process of learning more about EOs and have ordered several books. I do not want to endorse any particular brands, but I will say that all oils are not created equal and you DO need to do your research to find reputable brands. These aren't usually found in your local store. Word of caution: Just because anything says, "Certified Therapeutic Grade" or "100% pure," does not mean so. As a matter of fact, research for yourself. There is no such thing as an official therapeutic grade certification. These aren't regulated by the FDA. I have also learned through my research that you must be cautious. Safety first! More doesn't always mean better. Many of our modern day medications are made using the chemicals from these natural sources. After speaking to a few medical professionals and, of course, researching, it is not recommended that you ingest oils unless under the guidance of a certified aromatherapist or physician who is familiar with how they may interact with your current medication. But, essential oils have been used for thousands of years and ... I'm all about whatever works! (Within reason of course.) My current favorite oils of the moment for pain are a mix of Helichrysum and Copaiba which I apply topically. I also diffuse several oils. But, I'm just beginning to build my stock-pile and am still experimenting with new oils and combinations and have a lot of reading to do. After I've read through my books, I'll update you on what I learn and recommend anything I think is a good source of information.<br />
<br />
So, I'd love to hear from you! What have you found that helps your symptoms or pain?</div>
Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-73385802096224332482015-11-02T11:30:00.000-05:002018-05-28T23:21:09.810-04:00Grieving the Life that Was<div class="MsoNormal">
Yesterday was NOT a good day. When I said I was going to start a blog, and I
wasn’t going to sugar coat it, I meant it. So, here you have it. <o:p></o:p></div>
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This Halloween weekend was pretty stressful for my husband. I
think about the many hats he has to wear to make up for what I can’t do and it
burdens my heart. Head cook, cleaner, shopper, fixer, child-watcher, drink
fetcher, errand runner, homework helper, driver, moving sleeping kids in the middle
of the night, dog care-taker, launderer . . . you get the idea. EVERYTHING! He
works a full time job too and really he has no time to relax or unwind when he’s
at home. No questions about it. He is a hero with the plasticity of Silly Puddy
and the strength of Gorilla Glue.<o:p></o:p></div>
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I was tired of spending all of my time in bed away from the
family. This morning, I just wanted to be in the living room with the family,
drink my coffee, have my breakfast and check my email. You know, like a NORMAL person.
My amazing husband made some muffins, just for me. It was off to a good start.<o:p></o:p></div>
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What better way to start your day off on the wrong foot than
by getting an unfriendly message in your inbox. (Roll eyes. What is it now?) I
get I’m a newbie to this whole “blog” thing. I get when you put yourself out
there you open yourself up for criticism so you have to develop a tough skin.
But, I’ll admit, I’m still learning the etiquette of blogging, learning the “rules." I'm still researching. I will have to practice shrugging things off. To sum it up, an admin removed
me from a support group because this person disagreed with something I posted on
my blog and felt that sharing my collected information (unrelated to said post)
within the group was a conflict of interest because it was self-promotion for
my blog. (Insert sarcasm <u>HERE</u>.) As you can see from the MANY ads on my page, I
make a lot of money from my blog! I’ve also have published numerous expert
books on Tarlov Cyst Disease that I’ve written in my spare time and am plugging
for those in each post. My inbox is constantly flooded from companies asking me
to review or promote their products! I’ll be honest. It hurt my feelings and
felt like an attack. <o:p></o:p></div>
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One of the best quotes that someone told me once was, “You
don’t have to agree with me. I don’t have to agree with you. But, that still
doesn’t mean we can’t be friends.” Sadly, a majority of the population don’t
know how to do that. Once they get their panties in a wad, they say, “I don’t want
to play with you anymore,” and stomp off like little children as they take their
toys home. I happen to be of the opinion that if we were only friends with
people who agreed with us about everything all the time, we’d never have any
friends. That would make for a pretty lonely world. I have a pretty open mind
and am always willing to consider alternative angles or new information. I’m an
analyzer. Part of this journey is educating myself and learning. I might learn
new information that completely changes my opinion! I’m pretty sure there is a
rule about that somewhere that says, as a woman, I’m entitled to change my
opinion a minimum of 368 times a day! And, as the purpose of this blog
indicates, I will be sharing what I learn as I go along for people to take it
or leave it as they like.</div>
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<o:p></o:p></div>
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Social Media can be a great place where people who have common
struggles to come together to support each other. But, I’ve also learned that
more often than not, drama gets stirred up and that happy place can quickly
turn into a nuthouse. Which brings me to another good quote I heard once, “Everyone
is a super hero while they are sitting behind their keyboard.” Meaning, people
can be nasty and will say just about anything online that they would never say
to your face. I’d love to see some statistics on how many people have
experienced broken relationships because of Facebook. <o:p></o:p></div>
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<a href="http://3.bp.blogspot.com/-eY-2euL6dAc/VjeJ57SLdGI/AAAAAAAAMHw/es5L0HHiMkU/s1600/steve-maraboli-people-dull-shine-2c9j.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-eY-2euL6dAc/VjeJ57SLdGI/AAAAAAAAMHw/es5L0HHiMkU/s320/steve-maraboli-people-dull-shine-2c9j.jpg" width="320"></a>Back to my rotten day... I already have enough crap I’m
dealing with! So, forgive me if I’m not in the mood to play dodgeball with
someone hurling more negativity or drama my way. As you can see, it started my day off on the wrong foot but, in
retrospect, it’s been enlightening. <o:p></o:p></div>
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Next, just after reading that nice little message, my two
boys were getting a little loud in the living room while my husband was trying
to watch TV. <b>FOR THE LOVE OF EVERYTHING HOLY</b>, can we please just watch
something that isn’t Spongebob or Mickey Mouse Clubhouse for once!?!? My
husband told my 7 year-old to turn down the volume on his tablet. Unfortunately,
he was so engrossed in his Lego Minecraft Video that he was tuning out
everything Daddy was saying. So, as all of us with young children do from time
to time, my husband snapped. So, that lead to a dramatic giant melt-down of
tears, yelling, stomping to his room and a sprinkling of “I hate you"s along
the way. Of course, he had to make his suffering as loud as possible to remind
us all how miserably heart-broken he was. Meanwhile, the little one was in his
face repeating “stawbewy milk” and “watch Mickey Mouse” like a broken record.<o:p></o:p></div>
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My husband stood up
and said, “I just can’t take this anymore! I’ve got to get out. I’m stressed,
overwhelmed, depressed and just can't handle it anymore!” Even heroes have
their breaking point. He was gone for two hours. All I could think about while
he was gone was how my illness was putting such a huge burden on him and that
all of this was because of me. Look at what this is doing to our family! He
came back later and felt better after a break, but during the two hours he was
away, I just sat and cried the whole time, wishing I could take care of our
kids the way I used to. I just want our lives to be back to normal.<o:p></o:p></div>
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I talked to my TC friend in Texas who has lived this
scenario many times and she said a prayer for me over the phone. I called my
parents and asked if they could come take the kids out of the house for a while,
just to give Michael a break. I just needed some alone time to get in a good
cry. <o:p></o:p></div>
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On to the NEXT downer... Typically, I would enjoy seeing all of my
friends’ posts about their fun Halloween activities. But, as I was trolling scrolling along,
I saw pictures of my friends having a great time, dressed up in their costumes
at parties. Pictures of my friends at my college homecoming. I saw pictures of
other parents taking their kids’ to our Church Trunk-or-Treat and all sort of
other things we normally do with our kids. I know, if it weren’t for this
stupid illness, I would have been right there beside them. For the first time
since I’ve been down with this illness, everything really hit me hard and I
started to grieve for the life I used to have. It’s getting hard to look past
the present and envision the future we will have once this is all behind us. It’s
time to separate myself from people who bring me down. Facebook and I need a
little vacation. Take a deep breath. Re-center. Good. Now redirect your focus
on the blessings and God’s hand guiding our family through this.</div>
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<a href="http://3.bp.blogspot.com/-mO7-vYncHiQ/VjeKvQMrh8I/AAAAAAAAMH0/Yksm12aUYSQ/s1600/eckhart-tolle-changes-new-emerge.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-mO7-vYncHiQ/VjeKvQMrh8I/AAAAAAAAMH0/Yksm12aUYSQ/s320/eckhart-tolle-changes-new-emerge.jpg" width="320"></a></div>
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<b>So, what did I learn?</b><span style="text-indent: -0.25in;"> </span></div>
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<ul>
<li><span style="text-indent: -0.25in;">Don’t let other people’s negativity in your bubble. </span></li>
<li>If you are going to write from your heart, and put yourself
out there, you’re opening yourself up to criticism. So, be prepared to take it.</li>
<li>Turn to your friends of faith when you need support. Pray
with them.</li>
<li>Ask for help, for those who will not ask for help for themselves, when they
need it. :)</li>
<li>Accept things for what they are but don’t get stuck in the
past or the present. For me, I need to remember there is still a future and,
even though the present feels like forever at the moment, it will one day be
the past. Things will change.</li>
<li>Shut
the freakin' computer and walk away! Walk away. </li>
</ul>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-79781690157541501532015-10-30T19:03:00.000-04:002018-05-28T22:44:40.138-04:00Watching the World from the Inside OutTomorrow is “Oween,” as Jackson says. Usually, I would be
sharing the excitement with my boys right now. Tonight I would be helping them decorate
and carve their pumpkins. I would be cleaning the pumpkin goo off of the seeds
so I could bake them. Instead, my husband is doing it all. As I’m writing this,
I can hear the stress in his voice as he’s trying to change Jackson’s clothes
because he pooped in his pants. (Potty training!) I hate that everything is on
him and he is having to be Mom and Dad.<br>
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I’m imagining how excited Conner will be running from
door to door in his Storm Trooper Costume he is so proud of. I know little
Jackson is going to be so cute prancing around in his Mickey Mouse costume
saying “Tridder tweet” and telling people ‘tanks” after he gets his candy.
Conner’s school had a Fall Festival today and my Mom went since I couldn’t go.
Both boys wore their costumes and had a great time. I’m a proud mama. I wish I
could have been there to see the reactions of the people who told my Mom “Oh, look
how cute he is!” when they saw Jackson. I wish I could have watched the excitement
on my boys’ faces as they were to playing the games. I wish I could have seen
Conner running around with his school friends and been able to see the faces of
the kids he always tells me about. Jackson
melts my heart because he thinks he is a big kid too. Even though they pay no
attention to him, he runs and chases after them and has a blast anyway. He has
the biggest smile and funniest giggle. It always makes me laugh.<o:p></o:p></div>
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On the 4<sup>th</sup> of July, I watched the fireworks
from my bed. I am a self-admitted pyromaniac and love to light fireworks. Just
like Jackson, I love to be in the center of the action and excitement. (I’ve
called him Action Jackson since he was in my belly. He’s always been a crazy
little guy.) It was bittersweet. I enjoyed watching them, but deep inside I was
disappointed that I could not be outside celebrating like everyone else. This
time of year, the weather is mild. When my kids are playing outside with their
friends, I usually sit on the front porch and watch them. Now that the TC pain
has me in bed 90% of the time, I sometimes watch them play through the bedroom window.
Honestly though, I prefer to just close the blinds and shut the drapes. I don’t
want to see what is going on outside. I don’t want to see if it’s a pretty day
or not. I know if I look out my window, I am going to be sad that I can’t be
out there. I know it sounds depressing, but honestly, I find being in a dark
room comforting. <o:p></o:p></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-eQOd79172jg/VjP2md9g_AI/AAAAAAAAMFQ/rEd5HaUQDV8/s1600/20151030_170919.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-eQOd79172jg/VjP2md9g_AI/AAAAAAAAMFQ/rEd5HaUQDV8/s320/20151030_170919.jpg" width="180"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The view from my bed.</td></tr>
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As each new season and comes and goes, I feel like I am
missing out on precious time that is flying by so quickly. Conner and Jackson
will only be 7 and 3 once. As an adult, it’s easy to say that I’ve seen 37 Halloweens
and there’ll be plenty more. Every year it’s the same thing. For myself, I don’t
care so much that I’m missing anything. But for my kids, I do. There won’t be
another 3<sup>rd</sup> or 7<sup>th</sup> Halloween. This year, I will have to
experience my kids’ trick-or-treating it through stories and pictures. <o:p></o:p></div>
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It’s hard to predict what we’ll do about candy tomorrow.
I always enjoy seeing all of the neighbors and their kids dressed up in their
adorable costumes. I’d like to be able to sit on the front porch for a while
and hand out candy. But, who knows which
space the wheel will land on tomorrow. The weather seems to affect my TC pain.
I’ve found this is typical with other people too. Yesterday and the day before, I stayed in bed
and didn’t have to take a single pain pill! That’s huge great news! I couldn’t
believe it! Then, last night, I was awoken around 2 am with that ever-so
familiar pain going off in my legs. It kept me up for 4 hours. So, out came the
stupid pain pills. I didn’t get any sleep and had to spend the day catching up
on my Zzzzzzs. <o:p></o:p></div>
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It’s easy to focus on the things I can’t do and the things I’m
missing. So, I’ll try to remember the things I can do. I am still here to help
my kids get into their costumes and take pictures. I am still going to see
their excited faces when we light the pumpkins. I still get to watch them dump
all of their candy in the floor and go through it like a giant treasure chest.
I’m blessed my kids aren’t going to miss out on the fun on account of me. My
husband can take pictures and there will be more Halloweens. <o:p></o:p></div>
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But now it’s the weekend and I have a special little munckin
who’s home and wants to cuddle in bed with me, look through the Toys R Us
Christmas Catalog and watch Mickey Mouse Club House. <o:p></o:p></div>
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I’m not going to let this turn into a Halloween Boo-hoo fest! This too
shall pass. <o:p></o:p></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-70486053472206822842015-10-29T09:00:00.000-04:002018-05-27T19:14:15.170-04:00Addiction Verses Dependency and Why You Should Lock Up Your Meds!<div dir="ltr" style="text-align: left;" trbidi="on">
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Of course one of the first questions I asked the Pain
Management Doctor was, “Am I going to get addicted to pain pills?” The answer is, there is a difference between
addiction and physical dependency. If I am on opioids for an extended time
period, which I will be, my body will likely become physically dependent on the
medication. I will gradually develop a tolerance to the medication which will
either require increasing the dosage or switching to another medication.
Switching around periodically can help prevent building a tolerance. After I have recovered from surgery and it’s
time for me to stop taking the medication, I will have to be gradually weaned
off of it under the supervision of the Pain Management Doctor. But, this is
very different from addiction to pain pills.</div>
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<o:p></o:p></div>
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Here’s <a href="http://www.healthcentral.com/chronic-pain/coping-279488-5.html" target="_blank">the difference between a physical dependency and addiction</a>. <o:p></o:p></div>
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<b>Physical dependency<o:p></o:p></b></div>
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Opioid medications will cause a physical dependency
marked by abstinence syndrome when they are stopped abruptly. If these
medications are stopped or rapidly decreased the patient will experience
chills, goose bumps, profuse sweating, increased pain, irritability, anxiety,
agitation, and diarrhea. The medicines will not cause these symptoms if taken
as prescribed and any decision to stop these medications should be done under
the supervision of your physician in a slow downward taper.<o:p></o:p></div>
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<b>Addiction<o:p></o:p></b></div>
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Addiction to opioids is a psychological issue where the
patient seeks the feeling the drug provides. A person becomes compulsively driven
to take the drug and craves it. They might have physical, mental or social
consequences to using the drug, but they don’t care. They become willing to do
almost anything to get their fix. <o:p></o:p></div>
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This is where I feel it is important to share an experience
I had a year ago. I thought it would be a great idea to buy a cheap Groupon for
a house-cleaning service. We can’t normally afford it. The crew of four showed
up and split up in my house to “clean.” I bounced around from one person to the
other, concerned about cluttered counter tops and surfaces. I was picking up
ahead of them so they could clean everything. When I walked around the corner, I
noticed the guy was opening my closet doors. He was in the closet
where we kept our first aid stuff and over the counter meds and was TAKING THE
BASKETS DOWN and looking at them! When he saw me coming around the corner he
quickly started dusting the shelf and the top of the door and said, “We like to clean the top
of the doors and inside closets because they get dusty too.” Um…. Ok.? At first I was stupid and didn’t
realize why he was snooping around. One of the ladies asked me to come into my
son’s room and tell her about him because she loves kids and always wants to
know about them. Here I am, innocent and naive, thinking, “Oh, that’s sweet.” Meanwhile,
the other guy was in the Master bedroom.<o:p></o:p></div>
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Our Master Bedroom is always a wreck. It’s the last room
I get to or clean because visitors never see it and there is always a giant
pile of papers on the dresser and lots of crap on the nightstand. I went into
the bedroom because I didn’t want the guy moving my paper piles (It looks like
a mess, but I know where everything is!). When I came in, he was going through
my nightstand drawer, where I keep all of my medicine. He was picking up the
bottles and looking at them. At this point, I knew what was going on but played
dumb because there were FOUR FREAKING people in my house! I said, “What are you
doing?” “Oh, we like to clean the tops of drawers because they get dusty too.” I
walked into the bathroom (still keeping him in site) and he had set a bunch of
my medicine bottles in there and a trash bag was in the floor underneath it. I
said, “No, I don’t want this room cleaned. It’s such a mess and it would be too
much for you to do.” “Are you sure? We don’t mind” He kept pressing me to clean
the Master bedroom and I didn’t leave his sight after that. I think their plan
was for one of them to distract me while the other one went through my drawers
to find my pills, then swipe them into a trash bag and take them on the way out. <o:p></o:p></div>
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I will NEVER do that again! I will never let someone I
don’t know or have references from come in and clean my house! Lucky for me he
didn’t get away with any of my meds. But, it was a huge lesson for me. YOU NEVER KNOW WHAT PEOPLE WILL DO FOR DRUGS. I
reported them to Groupon and left a review of what they did. When I looked, other people were
reporting that they had done THE SAME THING in their house! How STUPID could I
have been? So, if you are a naive and trusting person like I am, LOCK UP YOUR
MEDS! Seriously, buy a mini safe and lock them up. <o:p></o:p></div>
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Anywho, back to addiction verses dependency…<o:p></o:p></div>
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I found this video by two physiatrists extremely useful in
describing the pros and cons of opioid medications.<o:p></o:p></div>
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**Opioid Use for Chronic Pain - The Good, The Bad and the
Ugly - This video was awesome but it's no longer available so I am posting another one that's ALMOST as good. <o:p></o:p></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-56386420921987905372015-10-28T14:04:00.002-04:002018-05-27T18:40:33.632-04:00The Motherload of Tarlov Cyst Research Articles - Access it Here<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://4.bp.blogspot.com/-2tw-x3P_q2U/VjORva2ZugI/AAAAAAAAMDY/-HEfjYGOo6I/s1600/knowledge-is-power.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Be your own advocate" border="0" height="238" src="https://4.bp.blogspot.com/-2tw-x3P_q2U/VjORva2ZugI/AAAAAAAAMDY/-HEfjYGOo6I/s320/knowledge-is-power.png" title="Tarov Cyst Research" width="320" /></a></div>
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<br />
I have created an open access folder where I am collecting all of the research articles that I can find related to Tarlov Cyst Disease. Please feel free to use it and download or share as you wish.<br />
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Please note that, even though I titled this page "research articles," case studies are not really considered research. Also, just because someone published an article in a medical or professional journal, does not always mean it is 100% right. It is common to find publications that assert the opposite. We should use discernment in our search for knowledge, especially considering that this is a rare disease. Don't believe everything you read on the internet either. I believe that Reta Honey Hiers of the <a href="https://www.tarlovcystfoundation.org/contact/" target="_blank">Tarlov Cyst Foundation</a> is the best option for finding out true facts. She is the most knowledgeable and up to date person that I know of and also has a medical background.<br />
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If you have any you would like to share that are not in my collection, please contact me and I'd be happy to add them.<br />
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<div style="text-align: center;">
<a href="https://drive.google.com/folderview?id=0B4kktcvzMoqwcGRud3R2eFh6dE0&usp=sharing" target="_blank">Tarlov Cyst Research Articles</a></div>
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<a href="http://4.bp.blogspot.com/-jfnWSp69uT4/VjOShw6VrYI/AAAAAAAAMDg/NiCPCDOeRsw/s1600/Be-Your-Own-Health-Advocate.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Tarlov Cyst Research" border="0" height="213" src="https://4.bp.blogspot.com/-jfnWSp69uT4/VjOShw6VrYI/AAAAAAAAMDg/NiCPCDOeRsw/s320/Be-Your-Own-Health-Advocate.png" title="Tarlov Cyst Research File" width="320" /></a></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com0tag:blogger.com,1999:blog-2723953808291244899.post-35819080888013340002015-10-28T12:06:00.002-04:002018-05-27T18:36:15.302-04:00Why it Sucks to Be a Pain Management Doctor or Patient<div dir="ltr" style="text-align: left;" trbidi="on">
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In Tennessee, there are strict <a href="http://tn.gov/assets/entities/health/attachments/ChronicPainGuidelines.pdf" target="_blank">Chronic Pain Management Guidelines.</a><o:p></o:p></div>
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First, doctors have to have you go through a screening
process. They won’t prescribe you any medications for the first month. If you
have any kind of mental disorder, anxiety, depression, current or past history
of drug abuse, you have to go through another evaluation. (In my case, I have
to go see a psychologist to see if me taking opiods is a risk because I have
bi-polar disorder and anxiety. Oh Goody! Another doctor’s appointment! I love
getting out. It feels so good when I have to walk, sit or stand!) <o:p></o:p></div>
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They have to take a urine sample to check for illegal
drugs, current medication levels and pregnancy before they can start treating me. They also do this periodically. Some do everytime. Some do random check-ins.<o:p></o:p></div>
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The doctor is supposed to come up with a treatment plan
and make reasonable attempts that includes things besides solely prescribing
pain medication. I’m guessing that’s why he referred me to a PT for aquatic
therapy and a prescription lidocaine cream. (Like I said, I just love getting out. It helps my nerve inflammation feel so much better, especially in the colder weather!) I also asked him about having an
injection in my piriformis because I have a lot of pain in that area. Worth a try.<o:p></o:p></div>
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“The goal of chronic opioid therapy is to increase function
and reduce pain, not eliminate pain.” <o:p></o:p></div>
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Then there are prescription restrictions, including <o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;">
</span></span><!--[endif]-->not prescribing more than four doses of a short-acting
opiod per day unless documentation can clearly show a medical reason. <o:p></o:p></div>
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</span></span>not prescribing methadone. (Thank you. I
don’t want or need that anyway.)<o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal;"> </span></span>no prescriptions for oral or sublingual buprenorphine, avoid
combining certain medications with opioid therapy. <o:p></o:p></div>
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</span></span><!--[endif]-->If patient is taking “benzo” – (such as Xanax,
Valium, Klonopin, Restoril, Ativan,) the opiod dose should not exceed 120mg
morphine equivalents daily dose, unless you consult that doctor and they say
it’s ok to come off of that Benzo.<o:p></o:p></div>
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<b>More regulations
for pain management doctors and patients in TN:<o:p></o:p></b></div>
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</span></span><!--[endif]-->Doctors are supposed to prescribe the lowest
dose of opioid first, then go up. <o:p></o:p></div>
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</span></span><!--[endif]-->Patients have to sign a treatment contract that
covers why they may stop prescribing me opioids, refill policies, must use one
pharmacy, if you lose your medication or it gets stolen - too bad, so sad.<o:p></o:p></div>
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</span></span><!--[endif]-->They must continually monitor patients for signs
of abuse or misuse and must do random drug screenings at least twice a year. I
must take all of my medications in with me. They can ask for random pill counts
at any time. (Some places do this every time.)<o:p></o:p></div>
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</span></span><!--[endif]-->All opioid therapy has to be handled by one
single doctor or practice and all prescriptions have to be filled at a single
pharmacy. So, can’t ever get any pain pills from another doctor.<o:p></o:p></div>
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</span></span><!--[endif]-->Opioids should be used at the lowest effective
dose.<o:p></o:p></div>
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</span></span><!--[endif]-->They cannot use more than one short-acting
opiate at a time unless clearly documented why it is medically necessary.<o:p></o:p></div>
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</span></span><!--[endif]-->They must continually look at patient behavior,
drug history results in the CSMD, Urinary Drug Tests, patient risk of misuse or
abuse. <o:p></o:p></div>
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</span></span><!--[endif]-->If a patient goes to the ER, the doctor must
inform the Pain Med Doctor about any changes, emergencies or conditions. IE –
The ER can’t prescribe me pain meds or inject me with pain meds without letting
the Pain Clinic Doctor know.<o:p></o:p></div>
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So, there you have it folks! I’d like to take a moment to
thank all of the recreational drug abusers and pill mill doctors for making it as difficult and
longs as possible for doctors and patients in chronic pain to receive the treatment
they need. Thank you legislators for leaving out the part where research shows
that <a href="http://www.pharmamodels.net/blog/new-study-sheds-light-extending-lifespans" target="_blank">people who suffer from chronic pain have shorter life spans</a>. We wouldn’t want to freak anyone out! The longer you suffer, the shorter your
life will be. Thank goodness I live everyday as if it was my last and I’m ready
to meet Jesus! <o:p></o:p></div>
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Here's a copy of the contract I have to sign to have treatment with narcotics.</div>
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<a href="http://3.bp.blogspot.com/-Dq_fejBVCeI/VjDyOafIcPI/AAAAAAAAL40/pf0mAxxlohw/s1600/20151028_080831-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Pain Management Agreement" border="0" height="320" src="https://3.bp.blogspot.com/-Dq_fejBVCeI/VjDyOafIcPI/AAAAAAAAL40/pf0mAxxlohw/s320/20151028_080831-1.jpg" title="Pain Management Contract" width="286" /></a></div>
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Cyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.com2