Chronic Illness Relapse

I don't know where to begin. I have so many emotions running through me right now. I start to write, and then walk away, only to come back to it later. Then I erase everything and start all over again.

So, how about a brief outline of background info.

In 2001 I was diagnosed with Mixed Connective Tissue Disease (MCTD) which is basically a mixture of Lupus, Polymyositis and Systemic Sclerosis. I loyally did everything my medical team told me to which resulted in my spending almost two years bedridden with a wonderful nurse caring for me. I was a full time single mother of two young children.

At the end of 2002, I weighed 89 pounds, despite being 5 foot, 7 inches tall. I'd lost much of my hair, had mouth ulcers, and my finger and toe nails had fell out. I was so weak I couldn't even keep my arm on an arm rest and couldn't sit up in a chair without supports. I no longer walked, and had to have my arm strapped to my electric wheelchair to be able to use the joystick controller with my hand. I never went anywhere except doctor appointments as I was to miserable to leave my home. It was at this time that I decided I wanted to quit taking the medications I was prescribed, and that quality of life was more important to me than quantity of life.

Throughout the next 13 years, I learned that our bodies will increase it's capacity to handle pain as time goes on. We can build up a huge tolerance for pain, if only we allow it to happen. Pain medications inhibit this process, as does most of the medications we are prescribed. I also learned that swearing off all medications is like believing I really am Wonder Woman instead of just aspiring to be like her. I discovered The Spoon Theory and made it my new motto and learn to plan my day in spoons. During the best times my house stayed clean, and during the worst times I realized that spending time with my children was more important than all the laundry being clean or the dishes always being washed immediately. Simply put, I lived.

Now, here I am. July 2016.

A year ago my body begin an attack in earnest and it hasn't let up. At present it has affected my intestines, my esophagus, and my lungs. I have an every growing crater across my lower back called morphea that is very painful deep within my body and feels as if there is a on going burning across my skin. My breathing has gotten so bad that I had to get a handicapped parking sticker, although my pigheadedness meant I refused to get a permanent one as I am still clinging to the belief that I will be better by the end of the year!

What all of this means ultimately is that I have to go back on medications that I haven't taken since I walked away from them at the end of 2002. Medications I reacted violently to and that never really seemed to help. Medications that I must take to slow and hopefully stop the morphea spreading and hopefully aide my breathing. Medications that may be able to give me a better quality of life than I currently have.

I want to look forward and not back. I want to stay focused on what all I can do, and what I want to do instead of complain and whine over what I can no longer do.

The key to contentment and happiness is perspective. I choose my perspective. It's up to me to decide to be happy.

This just means it's time to change my perspective. Nothing more. So here we go folks. A new journey, a new beginning.

And I'm gonna fight like hell. Cause that's what I do. ;)

Medical Professional? Where?

I've lost track of all the specialists I've seen since I was first diagnosed in 2003. I've seen several rheumatologists, pain specialists, neurologists, cardiologist, the list goes on and on. They have all done one thing in common ....... contradicted each other. 

I can not begin to describe my frustration. Supposedly, at present, rheumatologists are the "go to" specialists for Fibromyalgia and Connective Tissue Diseases (Lupus, Rheumatoid Arthritis, etc). Yet, it seems that these specailists are at a loss. Some still feel that it's an imagined disease. Others feel that strong narcotics and muscle relaxers are the only key since it's impossible to improve quality of life. Some feel that narcotics and muscle relaxers should not be used, but rather the pain should be dealt with and used as a sign of what you should and should not do. Some believe that there are a myriad of symptoms that falls under these diseases and that they often overlap in symptoms. Others believe that there is a strict criteria of symptoms for each disease and that symptoms don't overlap. 

I have been told that my symptoms are caused by Fibromyalgia and Mixed Connective Tissue Disease. I've been told that I don't have either, and that there is something else causing the symptoms (though that doc wasn't sure what it was causing it). I've been told that I should work through the pain and that I should stop when I feel pain. I've been told that my symptoms aren't caused by either Fibro or MCTD and that I should go see a particular specialists, only to have that specialist tell me it is the Fibro and MCTD. I could go on and on. 

Now, I'm just tired and frustrated. It appears that, although diagnosed with Fibromyalgia, MCTD, and Reynaud's Phenomena.....the only one that can be successfully treated is the latter. I've been told that I'm a difficult patient and won't have any relief because I refused to the prescriptions of Oxycontin offered me. This was after I made sure the physician had duly noted my previous drug addictions as a teen. I've been told that narcotics offer no real relief to the pain and worsen the fatigue. 

I've had medications that successfully help manage my pain without affecting me mentally suddenly no longer be covered by insurance. I've had medications that would help not be covered by insurance because the FDA had not explicitly approved it for my specific use. I've been unable to get certain medical care that has been proven to help because it's considered "alternative". I've been denied medical coverage o quoted rates that were so astronomical that I'd never be able to afford it. I've had to wait over 6 months on a waiting list to get in to see a doctor. 

I've had to argue with some doctors to prescribe me certain medications that I've used before because they didn't think it would work. I've had to argue with doctors that if I'm only asking for 30 Hydrocodone's every 3 months, there is no way I'm abusing them! I've been told that if I refused the pain clinic's prescriptions (the oxycontins) then there was no point in being given prescriptions for medications not as strong. 

Why am I harping on this now? Well, I recently had a doctor's appointment. It was my second visit with this particular doctor and I'd hoped that this would be a doctor that valued the whole body approach (do these doctors exist anymore). Tired of having several different specialists who all contradict each other, I want one doctor who can assist me in finding a combination of both medicinal and non-medicinal ways to improve my quality of life. Yet this specialists literally.......yes literally.....shrugged her shoulders and told me she didn't know what to tell me. She then named out some other specialists I might could see, telling me that she knew some of my symptoms could not be caused by MCTD or Fibromyalgia. This after years of being told by other doctors that the symptoms were a direct result of these diseases. 

I've heard very good things about a handful of doctors in relation to MCTD and Fibro. Yet, none of them accept insurance, none of them are nearby, and they all want astronomical fees. 

I can't help but wonder...............what exactly is going on with the medical field these days? How can several different physicians tell me opposite things and declare them to be truths? How can medications shown to help people not be covered by insurance but medications with a lower success rate be covered? Why is it that specialists won't work together as a team, but rather feel there is some sort of competition between them? 

I long for a time when your physician knew you by name. The time when they knew your family and asked specifically about them when you came in. The time when your doctor could discuss with you all your symptoms, and various solutions as to how to treat them. A time when your doctor actually researched any symptoms they weren't familiar with and found out information about what might help. 

I'm fortunate that my children got to experience this type of care when they were first born. Their pediatricians and doctors have all either retired or moved to another practice. I've been searching for a doctor that can offer me that type of care, and am continually discouraged not to find it. 

I'm not alone in this. Many people find that they receive more information about what will help them from support groups and message boards then from specialists and physicians. More and more people are turning to online pharmacies or even moving to states where medicinal marijuana is legal. Many people have quit seeing physicians completely and turned their back on the medical field that seems to only make things worse. 

Although I feel that the health reform has a lot of good suggestions, I feel that there needs to be a focus on quality healthcare and not just quantity. I have health insurance but prior to the Clinton Administration was one who would never have qualified due to pre-existing conditions. Even now, if not for the year I spent with state funded health care, I wouldn't have the paid health insurance I have now through my husband's employer. But, if I didn't have health insurance, would I want to pay for the medical treatment that I receive now? I'm not saying that focus shouldn't be put on helping those without insurance to obtain it..............but if everyone is going to be forced to obtain insurance, then shouldn't the medical care at least be of a greater standard?

I Did It Again

After weeks of battling disabling pain, fatigue, headaches, nausea and more, I had started to feel better. My husband and I spent two nights away at a cottage where I slept the majority of the time. Feeling more refreshed then the preceding weeks, I decided to follow up the mini-vacation with a trip to Biltmore Estates. Overall, I accomplished more in one day then I'd been able to do in months. I alternated between my hip locking on me, and the pain in my head causing me to take many more breaks then I expected. I spent the majority of the time sprawled out in the grass on the estate as my five year old ran, flipped, and climbed walls (literally). When we stopped for dinner on the way home, I told my husband that I was in immense pain, but that it felt good to know the pain was a result of having done something. I told him that if I was going to hurt, I'd rather it be from accomplishing something rather then from laying around in bed. 

The next morning I woke determined to push myself harder then ever before. If I could hang with Biltmore, then I could at least catch up on some housework and start packing for our upcoming move. I tackled the kitchen. I pushed through the pain, the fatigue and the headache. I swept behind appliances, boxed up items to give away, and bleached everything that could be bleached. I even managed to drive a short distance down the road (although the pain almost prevented me from making it back home). 

I went to sleep last night thinking of how much I could get accomplished this week if I kept up at the same pace. I thought about how I'd always let the fatigue and pain stop me, but this time would be different. I allowed myself to dream of all the fun things I'd be able to do with the children with my new found strength and vigor. Dreams of hiking trips, fishing adventures, and field trips filled my mind as I feel into the embraces of sleep. 

Then, today came. I woke with a fatigue so severe I couldn't get out of bed. After a few more hours of sleep, I managed to make it to the couch where I gave the older two children their daily chore and schoolwork assignments. I checked a couple emails and messages, and went back to the couch. The fatigue and pain today has been unbearable. At noon I went to lie down with my youngest  during his nap/rest time. I slept for two hours only to wake feeling more fatigued and in pain then when I first laid down. I dragged myself to the couch and gazed upon the chores that I had dreamed of accomplishing today. I begin to berate myself for once again having gotten my hopes up. 

Don't I know that each time I dream of accomplishing "normal" things, I am deeply disappointed? Haven't I learned yet that the unbearable pain and fatigue always come back and stop me? How did I not know that if I "over-did" it, I'd pay for it? Why did I think this time would be different? 

Rather then sit and bemoan my misfortune, I decided to blog. To get it all out in print and release the despair I feel at this moment. 

I had a   physician tell me long ago that I was living in denial. That I was not accepting the limitations of my physical body and that until I did, I would remain unhappy and unable to feel contentment. She told me that I needed to quit thinking about the things I had done and enjoyed before, and find the "new me". How ironic that the things she tells me I am refusing to accept, are the same types of things that I feel makes my child so unique and special. 

So, here I am today. Once again let down from having allowed myself to dream of a "normal" life. Yet, I find comfort in the fact that I don't have to completely accept the "new me". I know that God has promised to one day "wipe every tear from their eyes. There will be no more death or mourning or crying or pain." I think of the lyrics to one of my favorite songs where Chris Tomlin sings, "I will rise, when He calls my name, no more sorrow, no more pain." I know that God will strengthen me to accomplish His will today, no more and no less. I know that God "gives strength to the weary and increases the power to the weak......those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

While visiting the cottage on my husband's and my mini-vacation, I saw a quote in a book. It was a quote that I used to have posted in my bedroom as a child, in my locker at school, and in my cubicle at work. It merely stated, "Life is 10% how you make it, and 90% how you take it." 

My broken body today is out of my control. I can only do so much.....eating healthy, getting enough sleep, taking vitamins, stretching, etc.....the rest is out of my control. Yet, there is One who is in control and who provides me with all I need. I tend to lose sight of all God has given me and dwell on what it appears I have lost in my life. Yet, I have so much to be thankful and grateful for. God continues to bless me each and every day. Today I am even thankful that my pain and fatigue has caused me to stop and realign my thinking once more towards my heavenly Father.

No More Pain

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I am sooo very tired. Exhausted. All I want is to curl up and sleep. Yet, my monster screams “NOOOOO!!!” at the top of its lungs.

It started yesterday. My three year old was tired and cranky and asked me to pick him up. I held him for 5 minutes, no more. Within half an hour my lower back was severely hurting. I took a hot shower to try and ease the spasms and went to bed. It was very late and sleep did come. I woke this morning with sharp spasms and a deep-rooted pain in my back. Today was due to be a busy day. We had to go out of town to pick up our two older children (an hour drive), then to the wholesale club for grocery shopping (couldn’t be postponed any longer) and then back home (another hour). I KNEW I should utilize my wheelchair but then it seemed like it would be such a pain to get it loaded up and ready to go. So, off we went without it.

The shopping trip in the wholesale club is what did me in. There was no wheelchair sitting at the door waiting like the other times I visited. So, I had to walk it. I behaved. I didn’t even attempt to push the shopping cart but did hold on to it, and shelves, as I walked for support. Yet, by the time we hit the checkout lane, I was in tears. The pain was quite unbelievable. I didn’t have any medication with me and still had quite a ride ahead of me.

By the time I got home, all I wanted was to go to bed. But, groceries had to be put away and dinner prepared. We only had an hour before leaving for church and I knew that I’d have to provide some guidance. We headed out the door to go to church. Church is what gets me through my weeks. I wouldn’t care if I had to be wheeled in on a hospital bed in a hospital gown, I’d still make it to my weekly service. When there, I can feel God’s presence and know that He is always with me.  So, off to church we went. I made it through part of the service before having to head out to the foyer. There are very soft chairs in the foyer and thankfully there is a live feed to the flat panel television that hangs on the wall. I was still able to hear the service!

I left church feeling about the same as I did before I went. Not worse, which is good. I came home and after making sure the kids were all tucked in, I stood up to head to the shower. That’s when the spasms and pain really kicked in! Honestly, it felt like labor contractions. They stole my breath and held me in a vice grip. I made it to the shower, in the hopes that the steaming water would ease the spasms. Instead, I ended up having to have help getting out of the shower. I was dried off, dressed and put to bed. I laid there for quite some time. 

I am sooo tired. Exhausted! Yet, the pain in my back is keeping me wide-awake. I have put on three pain patches but don’t want to resort to the narcotics or muscle-relaxers. They increase the symptoms of my Fibro Fog and make it so difficult to remember things. Then, they seem to worsen my Periodic Limb Movement Disorder, which makes it almost counter productive to take them at night. I honestly can’t tell you if the benefits of narcotics and muscle-relaxers outweigh the side effects. Here lately though, the relief from pain has been so minimal that it’s not even worth it. Debating whether or not to take them put it past midnight. Now if I take them I’ll never make it up in the morning.

So, back and forth I go. Wondering if, even though I’ve had a partial hysterectomy, if there is any way I could be experiencing labor pains. Realizing that I would GLADLY take labor pains to this any day (and considering I had 9 ½ pound babies, this is no small statement). Wondering if I should just take the pain meds and pay the cost tomorrow in mental fogginess, exhaustion, and that achy all over feeling. Wondering exactly what would be the harm in using one extra pain patch (not that I’d do it). Wondering why, Why, WHY it has to hurt so bad? Wondering how a week ago tomorrow I managed to carry a child on my back in an emergency situation but today can’t even stand without help.

Tonight at church we sang a song that had they lyrics, “no more pain”. (I Will Rise) It’s not the first time we’ve sang it. Each time I hear it, when we get to that particular lyric, tears come to my eyes. No more pain. This, my God promises! He promises me a future with no more pain. NONE! Can you imagine? What would I do if I had no pain?

I would hug my children so tight, never wincing or grimacing. I would dance as if I’d never danced before. I would run through fields of flowers. I would swim in the ocean. I would hike the tallest mountain. I would tickle and wrestle my children just to hear their laughs and screams! I would sleep outside, on the earth, on a blanket of pine needles and moss to see the blanket of stars above me. I would run until my heart pounded, dance until my hair stuck to me, laugh until……..wait….laughing CAN’T hurt!!

Chronic Pain and Hiking

During the winter months, Fibro has this way of making you feel incomplete, like half a person. So much that you enjoy is taken away from you during the colder months that you jump at any opportunity to get that missing part of you back. Of course, that impulsiveness often has consequences that make you question whether it was worth it or not. This past Sunday was one of those times.

The weather here had been freezing cold for a few weeks. Much colder then our usual winters. I was bound in my home, wrapped up and praying for heat. Then, suddenly, our daytime temps went from in the 30s to high 50s!

This past Sunday, we got up to head to church. It was damp and a little rainy outside and a bit cool. Yet, after service, when we walked out it was warm and sunny! It felt wonderful and for the first time in several weeks I was able to take off my gloves!

There is a place I know of that offers level walking trails. They wind through the woods and alongside the river. The area promises sights of wildlife and beautiful views. Although my walking recently has been intermittent with wheelchair use, the weather was warm, the sun was shining and I was sick of being cooped up inside all winter! So, after a quick lunch, our family took off.

The walk started out fairly well. A couple places along the paths were flooded, but we could navigate fairly well around the spots. Our youngest decided to splash straight thru managing to soak himself from the knees down. Still, the temperature was warm enough that it wouldn’t harm him to be wet just for a bit. Planning to take the kids to the farthest point of the trail, and then take the short way back we excitedly begin our journey. A bit into the trail, it began to drizzle rain. It wasn’t enough to worry about and the children didn’t seem to notice.

Our daughter, who we suspect has fibro also, began to have pains in her legs. I was in a lot of pain myself so she and I lagged a bit behind the guys. We took breaks often and babied our sore beaten bodies. Yet, we were both so happy to be outside in warm weather and not cooped up at home.

We reached the point of the trail and was thrilled with the glorious view. Seagulls flock inland to the area we live in during the winter and the water looked white with them floating on it! 

The sun was peeking out of the clouds now and then and we enjoyed combing the riverbank looking for goodies.

Yet, what we discovered wasn’t quite so good. The banks of the river were filled with garbage and trash. We found softballs, tires, bottles, toys, trash, an old swingset…all kinds of things. 

It was so discouraging to see this beautiful creation distorted by the amount of garbage people had tossed into the river.

As the children and I were brainstorming different ways we could clean up the mess, our daughter's IBS (Irritable Bowel Syndrome) flared. She had to use the bathroom and we were at the farthest end of the trail from the bathroom! By this point in time, my monster had reared its ugly head and I knew I’d have to make the return trip slow and steady. Yet, my children are avid hikers and so we sent the two of them together along the trail back to the bathroom. In my fibro fog, I told the children at each trailhead to go right. We followed behind them.

At this point in time, the temperature rapidly began to drop. With the youngest being soaked, I took off his boots, socks and pants and put my sweatshirt on him upside down. In this way, the sleeves covered his legs and feet to warm him. My husband planned to carry him out.

But then we heard screams from the other two children. It sounded like they were saying something but we couldn’t hear what. Then the yells stopped. Worried that something may have happened, I sent my husband racing down the trail to the children (who were only a few minutes ahead of us). I waited a bit but when he didn’t return and I didn’t hear anything from him, I begin to worry. I put our youngest on my back, and fueled by fear and adrenaline began the hike back. To my horror, I realized I had not sent my children back the way we had come but instead the way that was completely flooded! There was no way I could get around the floods, much less the children.

By this point in time I’m really worried. I haven’t heard anything from my husband or older two kids. I HAVE to push on. Although I tried to walk around the deepest parts of the floods, fibro prevented me from being able to keep my balance. Scared that I would fall with my son, I ended up trudging right through the deep parts of the water.

I pushed and pushed and pushed. If something was wrong with my older two children, they would need me. Besides, the sun was setting and the gates would be closed and locked soon. There wasn’t going to be time for my husband to come back in on the trails and get our son and me out.

My body wouldn’t go anymore. I couldn’t feel my legs or feet and my hips were causing agonizing pain. I had no balance, and was shaky from the pain. I was scared. If something were wrong with the older two, I was of no use to them now! I couldn’t even get my youngest off the trail and back to our car. I prayed to God, asking him to please let me keep going. To please let me get back to the car and the other children.  I was crawling by this time, or so I thought. Let me explain.

I remember kneeling down and slowly crawling towards my destination. Yet, I suddenly realized that my knees and hands weren’t getting wet! I took a few deep breathes and saw that I was still standing! I didn’t feel like I was walking. I didn’t have the strength left for that. Yet, I had been!! . What had just happened wasn’t physically possible. I couldn’t walk another step.

I had stopped and was bending over with my hands on my knees. My youngest had fallen asleep on my back. His arms and legs hung straight down on either side of me. I couldn’t move and the pain was unbearable. I begin to softly cry. As I did, I heard the sweet voice of my youngest say, “Mommy, please don’t cry.”  I put one foot in front of the other and as I rounded the curve I had been standing in, I saw a tree stump with the sun shining down on it, despite all else being overcast. It was huge and was cut to the perfect height. I could easily sit down on it, not having to bend down or anything. It was big enough that my son could stand and walk around to get to my lap. I sat down thankful for a place to sit and wait. I sat looking at the trail in front of me, knowing that I couldn’t go another step and wondering how long it would be before help arrived.

I prayed that all was well and that help would come soon. As soon as I finished praying, I heard footsteps coming thru the woods behind me! Not from the trail, but thru the woods! I called out and it was my husband. He assured me the other children were fine. Upon realizing I had sent them back the wrong way, they had yelled to us to let us know that they were going back the way we had come (the short way). Then they had taken off and not heard our calls back. They had made it to the bathroom and were hanging out with the caretaker (whom they knew from previous visits). Yet, I was confused. How could my husband be thru the woods behind me? Had I taken a wrong turn in my fibro fog and pain? I told him to stay where he was and to keep talking. I could tell he was near to me and didn’t know exactly where I was anymore (though prior to hearing him had been confident to my whereabouts). I took just a few steps into the woods and was able to see him where he stood on the trail. He came down and got our son and I leaned against a tree to recoup. He helped me back to the trail and told me that if I just waited, he’d be able to come back and get me to. 

Only a short distance and both my older two children came running to assist me. Upon finding the trail map, I discovered that had I tried to push on instead of stopping whenI saw the tree stump, it would have taken much longer for me to get back to the vehicle. The trail wound back and forth before even getting toward the parking lot! Yet, by stopping when I did, my husband was able to find me quickly and get me back to the vehicle.

Upon arriving home, I was helped into my bed. After helping me get unclothed, warm dry clothing was put on me and blankets were piled on top. My children came and kept me company, filling me in on the events I had missed. We discussed how we had not thought to use the same rules we use when hiking, as we each had merely thought of this particular walking trail as nothing like our usual summer hikes. From now on, all walks will be considered hikes with the appropriate rules covered in a refresher course! 

That night I woke in severe pain. Three Lidocaine pain patches ended up lessening the pain in my hips just enough so that I was able to doze in a light sleep. The next morning I was confined, unable to move. The pain was unbelievable. Normally I would have beat myself up, knowing that once again I had made an impulsive decision and was stuck in bed as a result. Yet, all I could think about was how everything had worked out. Everything had happened, at just the right time, so that I was able to hear my husband walking back up the trail and cut of a huge chunk of distance and time. Sure, I’d made an impulse decision. It ended up with my being bedridden. Yet, sometimes the pain is worth it. 

Many of us with Fibro beat ourselves up daily. We beat ourselves up for not realizing we were out of spoons and using spoons from tomorrow. (The Spoon Theory). We beat ourselves up for not realizing that cooking that meal yesterday meant we couldn’t clean the kitchen today. We beat ourselves up for not accepting our own limitations, and for not realizing our potential. Fibro comes on so fast and strong, crippling the body and playing havoc on the mind. We feel so hopeless at times. If each day we knew what to expect, we each feel we could handle it better. Yet, what we can do today, we won’t be able to do tomorrow. It’s never the same. There is neither rhyme nor reason to Fibro.

It is so important, that when battling Fibro, we quit striving for the same perfectionism we had prior to our health problems. We were never going to reach the perfection we demanded of ourselves anyway. In some ways, that unrealistic drive was probably what caused our bodies to short circuit in the first place.

It’s time for Fibromites to quit looking at what was and start looking at who we really are. We are not defined by what we can or cannot do! 

How Chronic Illness Changed Me

  --> -->Before you start to read this blog, please know that you can click on the words that are colored blue to be taken to website that will give an explanation of the word. Thank you for your time in reading today's blog. Thank you to my family and friends for inspiring me to make my writings public and thank you to my online fibromite family for giving me the support and understanding I've lacked all these years!

I was on top of the world. I was working a fabulous job that I loved with great money and great benefits. I had two perfect well-behaved children. I was moving to the state I loved. I was going after the "American Dream". I would have my own home, a nice car, and my children would never have to wear hand me down clothing again. Nothing and no one was going to stand in my way. Or so I thought. 

I woke the morning before I was to rent my U-haul and couldn't move my legs. I thought I'd had a stroke. I was terrified. Within a week's time, I was in so much pain I thought of banging my head into the wall to knock myself unconscious. The only thing that stopped me was I feared I wouldn't succeed and would only hurt worse (although I wasn't sure that was possible). 

I remember lying in bed as still as I could because every movement was like razors carving up my skin and as if knives were slashing thru my innards. I couldn't stand it when the air/heat cut on cause the air currents moving across my skin were agonizing. I had to force myself to chew food since doing so created driving pain in my jaw. I had never experienced such pain. Me, who had stood proud after giving birth to a 9 pound, 4 ounce, and 21 inch long child with no medication at all........couldn't handle this. My children had to aide me to the bathroom and fend for themselves at the young ages of 5 and 2 years of age. 

So begin my trip to a specialist. A rheumatologist. I thought he'd be my savior. He supposedly knew all about the Rheumatic disease that it was suspected I had. I ended up being diagnosed with Mixed Connective Tissue Disease (exhibiting signs of Lupus and Polymyositis), Reynaud's Phenomena, and Fibromyalgia. I was overwhelmed, scared, terrified. I was so glad that I had a doctor who was able to diagnosis me, and who could give me the help I needed. 

During the period I saw this doctor, I listened to him wholeheartedly. I was devastated when he told me I would never get better then I was then, that I would stay on medications my entire life and that I would always require care (such as the nurse that then came to my home each day to bathe me, feed me, and help with my medications). When the doctor prescribed me a new medication, or upped my dosage, since I was getting worse and not better, I obediently took my medicine. After all, isn't that what we are supposed to do? 

By the time I quit seeing this doctor, I was on 21 prescriptions. My 5 foot 7 inch frame had dropped to 89 pounds. My toenails and fingernails had fallen off, my head had numerous bald spots, and the inside of my mouth was raw and painful. I couldn't move, couldn't eat, and honestly believed I was going to die soon. My children cried often due to my deteriorated health and their own fears concerning my illness. 

I left that doctor and his over prescribing ways and settled for a local home doctor who didn't believe I needed to be dosed to the gills! After a year, I was able to pull myself out of my wheelchair and stand with assistance. I remember the first time I walked with help! I remember the first time I made it halfway around the block (with assistance but still walking). I was carried home the rest of the way....but I HAD WALKED!! With each step I took I thought to myself, "Hmpf Doctor......I'll show you". 

I ended up marrying (a mistake but another blog for another time) and got pregnant with my third child. Suddenly, it seemed I was CURED! I felt it as early as my second week pregnant. I was ecstatic. Although my marriage was falling apart, and we were losing our home....I could move, walk, hike even! I took the kids and spent 3 months on the Appalachian Trail with them. It, to date, was the best time of my life! When cold weather came my body started to ache again. I moved temporarily in with my parents and the rest of the pregnancy was painful to every part of me....some parts I didn't even know could hurt! 

I've never gotten back to that wonderful feeling I had when I was pregnant. I've since had a hysterectomy so I won't get it back again in that way. I did stay in remission from the Mixed Connective Tissue Disease that I had and to date, it hasn't come back! 

I'm no longer chasing the American Dream. I'd like to own my own land, and will do so, but it's no longer a motivating factor in my life. I've had to change my perspective in life. I've had to learn how to, each and every day, find the beauty in the world. Often it's the smile of one of my children, or their hug when it doesn't hurt too much. Sometimes it's a butterfly floating past the window, or the leaves as they fall from the trees. Many times it's something I never saw as beautiful before, like the way a millipede moves it's legs when it moves. 

I've had to learn to live with things that before I would have never lived with. Sometimes it's dirty dishes in the sink overnight cause I can't bend over to load them into the dishwasher. Or maybe it's having to wear super soft clothing with little to no seams when I go out, even though I think I look froopy. It could be the kids having to eat cold cereal for breakfast or canned ravioli for dinner. I used to beat myself up over these things....but in the long run, is that what anyone will remember? 

I've learned to laugh at all kinds of things. I've learned to joke around about the things I can no longer, or rarely do. I laugh when crazy things come out of my mouth because Fibromyalgia affects your brain. I joke with the kids when I'm limping around and they lovingly refer to me as "Mama Gimp". And sometimes I laugh for absolutely no reason at all! 

I also cheer the small victories. Shaving my leg, cooking a meal, remembering to call someone, making it through the grocery store, even being able to make the grocery list. These are the small things that I celebrate. Recently I started a new medication and was able to do math. Now, that may not seem like a big deal until you look at my history. Prior to Fibromyalgia, schooling was no problem. I was the straight A, 4.0 GPA student. After Fibro, simply math stumped me. Suddenly, with the new medication, I could do math again! When I told my children and showed them, their faces lit up and they hugged me. We cheered and celebrated all day, much to others people's amazement! Hey, when life gives you lemons.......make lemonade! 

I've learned never to judge a book by its cover. I remember one day at a supermarket being outraged that I'd just seen someone pull into a handicapped parking spot and then walk in as if nothing was wrong with him. I figured it was their grandparent's parking decal. I was livid! Yet, now I'm often the person parking in the spot and walking in as if nothing is wrong. Granted, I can make it in, but after getting what I need, I most likely won't make it out so well, or even without help. I remember looking at people who wore baggy sweats, hair undone, and overall looking frumpy and shaking my head. I mean, couldn't the at least take the time to dress? Now, I'm the one wearing frumpy clothes since my skin won't tolerate anything else. I'm the one with messy hair since I couldn't lift my arms to reach behind my head to brush it. Yeah, I don't judge people by what I see anymore. 

I've learned that playing a board game with your kids means more to them then wearing new clothing. I've learned that cooking a meal and being able to feed my loved ones brings me much more satisfaction then driving a new car. I've learned that the "American Dream" wasn't my dream after all. 

Fibromyalgia has changed me. It's made me see life for what it truly is. It's made me appreciate those I love and those who love me even more. Would I take my life before Fibro if it were offered to me again? Would I choose to live pain free if it meant going back to who I was before Fibro? Sometimes I get depressed and feel overwhelmed. Sometimes I long and cry for a day with no pain. Sometimes I complain. Would I choose to live pain free if it meant going back to who I was before Fibro? Nah..... I don't think so. Fibro, in a way, saved me!

Today Sucks

Today is a bad day. Last night my joints killed me and I didn't sleep. Today I woke in immense pain and depended primarily on my electric wheelchair to get me from room to room. My pt came and worked on me for quite a bit (Thank God for her) but not long after she left her boss called and let me know that my insurance (NC Medicaid) may not pay for anymore visits. This after only 3 sessions. Yet, Medicaid is willing to pay for me to have numerous prescriptions including but not limited to narcotics, opitates, muscle relaxers and more! I'm distraught at this moment as I was really hoping the physical therapy could keep me mobile through the cooler months.

You see, this also is the face of fibro and MCTD.

Changes

Today started as every day does with me. I open my eyes and am instantly bombarded with the pain throughout my body. Then, I feel exactly how exhausted I am from the lack of sleep I've gotten through the night. I feel a sense of dread knowing that as soon as I move, a thousand, brilliant flashes of pain will flash through parts of my body I never even noticed I had before I got "sick".

Yet, once again, the demands of motherhood necessitate that I do what seems to be the impossible. One of my children come to help work out the knots that have formed thru the night. It's ironic in a way, if I didn't have them, I'd probably give up and stay in bed. But, since I do have them, they help me every morning reach the goal of getting out of bed.

After the children work on me a bit, it is time for me to drag myself out of bed. I must forcefully straighten my body as I walk to the bathroom, thinking to myself that I should probably use my wheelchair to conserve strength. But, I stubborn. I have to at least make it to the bathroom with some semblance of self before I'll start my day.

My day consists of nothing compared to my life before illness and chronic pain. Yet, I've learned to fill the voids that existed when my former life was taken from me. My days now consists of checking the kids schoolwork, planning dinner according to how much pain and energy I'll have by then, checking my emails, and now this....letting others in to know my daily battles.

Dinner is always tricky. I have to plan it first thing in the morning. I usually have a good idea then of what I'll be able to accomplish. I weigh out my to-do list, figure out how much energy and strength it'll take, then figure out how much is left for dinner. Our cabinets and fridge range in food from purely instant to practically gourmet. The latter doesn't happen in the cooler months, but sometimes during the summer I'm able to plan ahead to take a day to cook. It's one of my own indulgences that leaves me unable to do anything the following 2-3 days. Yet, some things are worth it and cooking a wonderful home cooked meal for my family is worth being out of commission for a few days.

The children's schoolwork doesn't always make sense to me. Hard to believe that I was a straight A student and now I struggle at times to figure out if the children did their work correctly. Often, while looking at their work, I have that nagging feeling that I know the answer....it's there somewhere.....lurking in the far depths of my mind where the fibro fog has covered it in layers.

If I'm having a good day, I'll manage to get a few loads of clothes folded. My oldest puts the clothes from the washing machine into the dryer. My middle child takes dry clothes from the dryer and puts them on the couch for me to fold. They both alternate helping me get the clothes sorted and into the washer to start the process. Although I often refer to The Spoon Theory to tell how my day is, I find that I tend to also weigh it according to laundry folded. Folding three loads of laundry is a really great day for me and probably means that dinner will not be completely instant!

Each day there is one thing that remains constant. That throughout all of it, I could not do anything without Him. He gives me the courage to go on when I feel I can't handle another thing. He gives me extra spoons when I need them (read The Spoon Theory to understand the significance of spoons). He soothes me when I cry, patiently listens when I am angry and yelling my wrath, and offers me comfort even when in my distress I disrespected him.

Remember "Footsteps in the Sand?" I read it as a child for the very first time. I purchased the address book I read it on and still to this day have possession of the outer cover of that address book. I look back over the scenes from my life, and can only rarely see a time when their were two sets of footsteps. God has carried me the majority of my life. What would I do without Him?

My desire now is to come to a place in my life where there are usually two sets of footsteps. A place where I am standing on my own two feet and with God's help can reach out to others and help them face the horrors I have in life. My illnesses knocked me off that goal for a while, but I've come to realize it is only one more pair of shoes I have worn. It opens the way for that many more people to be reached. I've walked in many shoes. Now it's time for me to find the pair that fits me and wear them from here on out. He'll be there for me through it all. I could never have made it without Him.

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalms 91:4

For 7 years I've been facing this monster disease that seeks to destroy me. I move through the summer months able to easily hide the pain, knowing that when cooler weather comes, all will see my fragility. Each fall and winter, those who met me in the summer look at me in amazement as I shrivel....shrunken and held captive in the prison that is my own body. Time and time again, I hear the question asked, "How do you do it?" 
I'm never really sure what I'm being asked. How do I manage to get out of bed each morning when the pain is so severe that I can barely take breathe into my lungs? How do I handle 3 kids, one with special needs, when I often need help dressing myself? How do I let total strangers into my home to bathe me? How do I tolerate only eating the same food day after day cause everything else makes me sick? How do I make it on only a couple hours sleep each night? How do I handle the stares of others when I'm out and about in my electric wheelchair? How do I deal with losing all my hobbies and activities that once filled my life? How do I accept that I have these illnesses and that there is really no treatment that helps and nothing anywhere near a cure? 
The lists of questions that a person could potentially mean goes on and on. Yet, the answer to all of these is one and the same.
I do it the same way the woman who lost her breast to cancer takes her first trip to the beach afterward. I do it the same way a mother takes her autistic child grocery shopping knowing that he'll most likely meltdown from the sensory stimulation. I do it the same way the man goes to work each day to support his family despite his back being bent from years of hard physical labor. I do it the same way the child with ragged out hand me downs goes to school on picture day. I do it the same way the adult child sits by their dying parents bedside. I do it the same way a parent sits in the waiting room of the hospital when their child is undergoing surgery. I do it the same way a pre-teen with scars along their torso changes clothes for gym class. I do it the same way a cancer patient goes in to get their chemo treatment. 
I think that Helen Keller said it best when she said, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved".
Ultimately though, I know, deep down inside where all knowing is absolute, that God has carried me through the past 7 years, just as He did many times before that. I have bad days like everyone else. I have days where I want to stay in bed and bury my head and cry myself into oblivion. I have days where I curse the doctors, specialists, pharmaceuticals companies, and researchers for not finding a treatment that works. I have days where I cry out to God and ask Him "Why? Why? Why?" But, each day I go to bed knowing that I am fortunate enough to have a tomorrow and that God is right there with me each step of the way. 
For those of you struggling with the pain, remember that you are not alone. We are united as one through our pain and our struggles. We understand each other as no one else does. 
For those of you who love someone struggling with the pain, take a moment to follow the link on this page to "The Spoon Theory". Take the time to support your loved one even though you don't understand. Don't expect us to be able to explain something that we don't understand or even know from day to day. Most importantly, thank you for loving us despite our conditions.