How Do you Handle Difficult Seasons - Part 4, God keeps performing miracles!

This is continuation of my series on Handling Difficult Situations. For Part 3 click here.

“I have the strength within me to get through this.”

– FALSE.

"It's not what happens to you. It's what you do with what happens to you.” - Coach Phillip Fulmer

“God is more concerned about what is happening in me than what is happening to me.” – Christopher R. Bear

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.

I can do all this through him who gives me strength. Philippians 4:13

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

"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’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.

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.

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.

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.

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.

How Do You Handle Difficult Seasons. Part 3 - True or False

Continuing on in the series of difficult seasons, 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.

“That which does not kill me makes me stronger.”

-          TRUE 

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.

·       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

·       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

·       … 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

·        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

·       “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

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. 

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. 

• He gives power to the faint, and to him who has no might he increases strength. Isaiah 40:29

• 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

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. 

• 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 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.

Tune in for part 4 of this series. 

A Great Morning

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.

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!

Shut up and Ride the Pig

Piriformis Steroid Injection (Round 2)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I have a date!

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.

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!

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.

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.

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!

Thank you friends who have been keeping up with me and continuing to pray for me and my family. 

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. 

Watching the World from the Inside Out

Tomorrow 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.

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.

On the 4^th 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.

The view from my bed.

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^rd or 7^th Halloween. This year, I will have to experience my kids’ trick-or-treating it through stories and pictures.

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.

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.

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.

I’m not going to let this turn into a Halloween Boo-hoo fest! This too shall pass. 

Addiction Verses Dependency and Why You Should Lock Up Your Meds!

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.

Here’s the difference between a physical dependency and addiction. 

Physical dependency

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.

Addiction

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.

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.

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. 

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.

Anywho, back to addiction verses dependency…

I found this video by two physiatrists extremely useful in describing the pros and cons of opioid medications.

**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. 

The Motherload of Tarlov Cyst Research Articles - Access it Here

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.

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 Tarlov Cyst Foundation 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.

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.

Tarlov Cyst Research Articles

Why it Sucks to Be a Pain Management Doctor or Patient

In Tennessee, there are strict Chronic Pain Management Guidelines.

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!)

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.

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.

“The goal of chronic opioid therapy is to increase function and reduce pain, not eliminate pain.”

Then there are prescription restrictions, including

·       not prescribing more than four doses of a short-acting opiod per day unless documentation can clearly show a medical reason.

·       not prescribing methadone. (Thank you. I don’t want or need that anyway.)

·      no prescriptions for oral or sublingual buprenorphine, avoid combining certain medications with opioid therapy.

·       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.

More regulations for pain management doctors and patients in TN:

·       Doctors are supposed to prescribe the lowest dose of opioid first, then go up.

·       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.

·       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.)

·       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.

·       Opioids should be used at the lowest effective dose.

·       They cannot use more than one short-acting opiate at a time unless clearly documented why it is medically necessary.

·       They must continually look at patient behavior, drug history results in the CSMD, Urinary Drug Tests, patient risk of misuse or abuse.

·       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.

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 people who suffer from chronic pain have shorter life spans. 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! 

Here's a copy of the contract I have to sign to have treatment with narcotics.