The Cut That Killed Me

Well...I had planned on posting my part 3 of Myths and Facts about Difficult Seasons, but life just hasn't worked out for that yet.

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.

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!

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.

The Cut that Killed Me

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.

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.

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."

Return to Pain Management - Shots and Meds

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.

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.

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.

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!

Piriformis Muscle

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.

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!

How do you handle difficult seasons? Why do they happen? - Part 2 True or False

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. 

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. 

Ready to play Natalie's version of True or False?

1.       “Everything happens for a reason.”

- FALSE. Often, yes. But not always.

I think that phrase is bull that to make ourselves feel better. God does 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 God can use anything that happens for His purpose. He can transform our struggles and make blessings come out of them.

Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? ... Neither death nor life, neither angels nor demons, 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.

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.  He can transform our pain to bless others by providing encouragement to others.

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!)

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.

In part 3 of How do you Handle Difficult Seasons, we will examine another "True or False" statement.

Follow up: 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: 

“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

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. 

Difficult Seasons - Part 1

How do you handle difficult seasons? Why do they happen?  - Part 1

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.

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. 

Here are a few things I’ve been doing to help me.  

1. Making a list of my blessings. 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.

2. Laugh. 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! 

3. Making a list of people who I can pray for who are also struggling. 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.

4. Making a journal of the things I’ve seen God do and when He has spoken to me. 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.

Stay tuned for part 2 of this series where I will discuss truths and myths about going through difficult times. 

Whatever Works

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?

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.

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!

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.

I'd like to state that NO companies have contacted me or asked me to review their products. I am not being paid or given free stuff.

My Arsenal

1. TENS unit. 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.

2. Two Old Goats Lotion. 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!

3. Ice on my sacrum. 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.

4. Heating pad on my lumbar area. I usually like to do this simultaneously with the ice, since it balances out the freezing cold that I hate.

5. Tushy Cushy for sacral and coccyx pain. 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?

6. Natural Calm. 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, follow the directions. 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!

7. Essential Oils. 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.

So, I'd love to hear from you! What have you found that helps your symptoms or pain?

Grieving the Life that Was

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.

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.

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.

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 HERE.) 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.

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.

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.

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.

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. FOR THE LOVE OF EVERYTHING HOLY, 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.

 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.

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.

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.

So, what did I learn?  

• Don’t let other people’s negativity in your bubble.  
• 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.
• Turn to your friends of faith when you need support. Pray with them.
• Ask for help, for those who will not ask for help for themselves, when they need it. :)
• 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.
• Shut the freakin' computer and walk away! Walk away.