Moments....

 I have come to the conclusion, most recently in my 37 years, that life is made up of moments and nothing more. We choose which of those moments to cling to. We ourselves determine which of those moments will mold us and direct us. Some may choose to grasp moments of negativity, forever letting those moments hold them hostage and sway their decisions. I was one of those people for many years.

Then, I became sick. I spent a year and half in bed with a nurse caring for my most intimate needs. In despair, all I could see was that I was no longer a mother to my children, a friend to others, a daughter to be proud of, a person of worth. My young children were growing up on their own. I was not able to guide them, direct them, supervise them. My heart was crushing within me. I was told I would not make it past 10 years. I was suffocating. Although my illness should have given me a better understanding of the immune system issues my son had fought through his life, I couldn't get past the moments I clung to of negativity.

The moment the doctor told me I would never be better.

The moment my friends abandoned me stating that they could not stand to see me in so much pain.

The moment my son and daughter stood by my bed crying because they wanted to cuddle but their touches brought me such immense pain I would scream out, despite my deepest resolve not to.

Then, I had a nurse. A beautiful woman by the name of Shirley. I doubt she even understands the impact she had on me. Mrs. Shirley refused to accept the doctors doom and gloom predictions. “Imperfect men”, she would tell me. “Only God knows everything”, she would say. For each negative thing I had to say about the state of my body, she had three more positive things to say. Through persistence and unconditional love, this woman pushed me to stand up for myself. She pushed me to tell the doctors “No More” when I felt the medications were creating worse damage. Once I refused the doctor's 21 prescriptions, she pushed me to work on moving my body. Again, I clung to moments.  

The moment that she held my elbows up so that I could wash my own hair.

The moment I sat upright an entire evening propped on pillows in my bed.

The moment my children learned if they ran a light finger along my arm, I could tolerate their touch.

Yet, I didn't realize yet that life is made up of moments. I sought a physical therapist that would help me walk again. When the therapist came to the house, I clung to that moment.

The moment I was told, “You are living in denial. You are never going to get better. You are never going to walk. Until you accept this, you will never be happy again.”

Yet again, Mrs. Shirley came to my rescue. I again grasped hold of moments.

The moment I sat at the dining room table, watching my very young children help Mrs. Shirley prepare a meal.

The moment I was able to put a bit of my food into my own mouth.

The moment I took my first step.

Yet still, I didn't realize that life is made up of moments. As I moved towards life, I still held onto so many negative moments. Highlights of my life, moments that should have been treasures, became my anchors. The moments of my past became what I clung to.

The moment I hiked that gorgeous waterfall.

The moment I drove a stick shift down a curvy road at sunrise.

The moment I swam across the lake and back.

The moment I saw my first paycheck as an order selector.

The moment I ran and played with my children on the playground.

The moment I spent my night dancing.

My life was held in moments.....of the past. I was left with my present suffocating still. My choices in life were based off the moments of my past. The moments I could no longer relive. Those moments held me hostage and resulted in bad decision after bad decision.

One of those decisions resulted in my becoming pregnant with my third child. In an attempt to provide my children with something I felt I no longer was able to give them, I dove into a relationship. A business deal that ended sourly. However, with the pregnancy my rheumatic diseases that had left me so terribly crippled went into remission. I still fought other chronic illnesses and pain, yet I was grasping such beautiful moments.

The moment I went camping for three months on the AT as a pregnant single mother of two.

The moment I hiked a beautiful waterfall.

The moment I drove a car down beautiful, curvy, mountain roads.

The moment I swam in the swirling waters at the base of the falls.

The moment I hiked a mountain to view the sunrise.

The moment I watched the sunset over the mountains from the fire tower.

I clung to these moments as my child grew within me. I battled some seriously difficult months where pain mounted from my other chronic health issues, yet eventually they would ebb to the edges of my being, allowing me to do much of what I enjoyed. I realized during this time that on the bad days, I must find my “happy thought”, my moment. On the bad days my moments became seemingly small. Moments that I could grab from where I laid in bed.

The moment a caterpillar crawled along my windowsill

The moment a humming bird nipped at the feeder

The moment the sun shone through the leaves

The moment my children's laughter would fill the morning.

However, I still did not realize that my life was made up of moments. Even in the midst of having to find a moment to cling to before I could start my day, I had no realization of that fact.

There were other moments I grasped and clung to that defined who I was and forever altered the decisions I would make.

The moment the doctor said, “Your son's (Pookie) diagnosis is High Functioning Autism”

The moment the doctor said, “Your son (Keegan) has Asperger Syndrome.”

The moment he said, “I'm leaving you, I'm never coming back, I never loved you. Your health problems and your kids special needs are too much for any husband to handle”

However, a year and a half ago, I came out of remission from my rheumatic diseases. I felt the change within me and, though I sought to deny it to myself, I knew what was happening. I pushed myself so very hard the last several weeks to provide my children with moments.

The moment my children and I visited Lake Lure

The moment I hiked the glorious mountain trails with water bottles and children in tow

The moment I lounged on the deck watching the kids play in the pool

The moment I walked the beach with my children looking for sea shells

The moment I swam in the ocean as the waves threatened to knock me over

I didn't realize that life was made up of moments. Yet, there were more to come.

The moment I heard, “I'm sorry to say, you were right. Your ANAs are elevated again. We need to discuss treatment”

The moment my closest friend said, “Refusal of treatment is the same as refusing to be a mother to your children”

The moment my mother said, “It doesn't matter if the medicines make you sick, you need to live as long as you can for your children.”

The moment my friends walked away because they couldn't stand to see me in pain

The moment my children's faces locked in fear as I told them the news of my coming out of remission

The moment the doctor said, “6 to 12 years is the average life expectancy for someone that doesn't respond to treatment. Without treatment, it may not be that”

The moment tears streamed down my face as I told my children, ages 6, 12, 15 that I was refusing treatment and what that meant.

I still didn't grasp that life is made up of moments. I could only, once again, cling to the moments of a past that no longer seem to relate to me.

The moment I paid the bills each month in full

The moment I would get a job and nothing stopped me from doing it

The moment my son's neurologist told me he had advanced so far due to my pushing for early intervention in his treatment.

The moment I had taken a mortgage out on a home

The moment I had taken my kids to a restaurant

The moment I took my children to a drive in movie

The moment our family went ice skating

The moment we had hiked and saw the baby deer with spots

I was once again living in the moments of the past, allowing it to hold me hostage to the present and the future. I started a “Bucket List'. Each day I added new things. I had no idea that there were so many experiences I wanted to have. Now that my days were numbered, I felt compelled to do so many things. I would have an experience and jot it down in my bucket list journal after the fact.

As the months passed by, I begin to notice that each thing I listed in my bucket list were moments. I slowly began to see that everything in life was made up of moments. That moments is what we had, what we grasped, what moved us. I realized that I wanted my life to be made up of moments each and every day. I set out to create moments. These moments weren't the same as those I had when I was healthier, yet they were moments to be treasured just the same. As I actively begin to create moments, I was able to reflect on moments from the past with joy. My moments today are different.

The moment I feel the water cascade over my body as I sit on the shower floor

The moment I lie my neck on the heating pad at night

The moment my child puts his arms around me, squeezing just the right amount not to cause pain

The moment I can open a bottle by myself

The moment I'm able to shave my legs

The moment I'm able to blow dry my hair

The moment I'm able to play trains with my son

The moment I'm able to sing along in the car with my children

The moment I'm able to stand in the rain as my children dance and play around me

The moment I'm able to look out my window and see the moon filter through the leaves

My moments are different, yet they are mine. They are beautiful in their own right.

Last night I had a moment that I wanted to share with you, a moment in some way that I already have shared with you. Last night I watched “The Intouchables”. Watching this movie was filled with moments for me.

The moment in the beginning of the film when I wondered, “How can you be so humorous about your condition?”

The moment when he handed him the phone, forgetting that he was bound by invisible chains in a prison that was not of his own making and realizing how delightful it is when someone sees you and not your disability.

The moment I realized that one of my boyfriend's greatest appeals is that he sees me and not my disability, even as he cares for my needs.

The moment when he spoke of pity and I understood so well.

The moment when he saw Paris at night and realized that life is about moments.

The moment when he had to stand up to his daughter, presumably feeling as inadequate as I do when I wonder if I'll be able to enforce anything I say to them.

The moment his phantom pains struck and he stood by his side to comfort him, just as my boyfriend has done for me when the pain is so unbearable that I wish someone would knock me unconscious.

The moment she walked up to his table

The moment he para-sailed, refusing to let his disabilities keep him from that which he loved and which broke his body to begin with.

The moment tears streamed down my face because I remembered that I am not alone, that others are here with me, sharing these moments.

Each day still adds more moments, some are saddening and have a tendency to want to weigh you down.

The moment he tells you that he just woke up and decided he didn't care about you anymore and wanted to break up.

The moment when you realize you are taking substantially less than something is valued at, simply because you must pay the bills that are due for disconnect.

The moment when you consider moving to a warmer climate because you can not tolerate the pain of the cold any longer.

Yet, in the midst of these moments, you must choose which ones to cling to. I choose to cling to other moments.

My children and I share a solid and inseparable bond.

I have friends that truly love and respect me.

Our most basic needs are always met somehow (food, clothing, shelter)

An angel gave my children a Christmas they otherwise would not have had.

Our family helps others.

I love myself.

FibroFog

I was reading the May/June 2011 issue of Arthritis Self-Management magazine today. There is an article about Fibromyalgia. Most of it I already knew. However, one section caught my eye. It stated, "Recent research has found that people with fibromyalgia do not make new memories at a normal rate when their attention is divided." It went on to use an illustration of a person with fibro talking on the phone when someone knocks on the door with a message. The person with fibro would find it difficult to remember what the phone conversation was about. Personally, I'd forget I was even on the phone and should I recall that useful bit of info, I'd panic wondering who it is I'm talking to! 

The article also stated that those with fibro have a "naming speed deficit" that requires more time to read words and name colors then those without fibro. I had wondered whether my decreased reading ability had anything to do with my fibro....now I know.

When I read articles such as these, there is always one or more "lightbulb" moments. It's a moment where, suddenly, something in my life makes sense. Something I'd worried over, or was aggravated by, was contributed to Fibro.

When I'm doing chores, typing on my pc, reading something, etc...I always tell my children and husband that they can't interrupt me. If they do, it'll take me longer to figure out what I was doing then to complete the task! I knew I wasn't always this way, but wasn't sure if it was contributed to the fibro.

I've always been an avid book lover. I started reading at a young age and never stopped....until fibro. I still love books, but it's difficult to read now. If I'm reading a book and have to get up for something, I have to go back and scan the parts I've already read to figure out what is going on. When I go to bed at night, I'll wake and not even recall I was in the middle of a book. I tell everyone that I can remember things I did years ago just fine, but can't seem to remember what I did yesterday. Maybe it's not that I can't remember, but that because my attention was divided (and isn't it always when your children are around?) that the memories weren't made!!

Part of me wants to scream triumphantly and run around showing this article to all those who have gotten mad at me for not remembering. However, those are the same people that would scoff at the article and said it probably wasn't written by a professional. So, instead, I'll share it here. I'll share it with my fibromites so that they'll have their own "lightbulb" moments and feel relief knowing it's not just them. I'll share it with my blog followers who support and/or love someone with fibro so that they can understand their life just a little bit more.

Gentle hugs to each of my fibromites.

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?

Cymbalta Beware

For those of you who have spoke to me in the last week or so, you may have noticed that somethings not quite right. Well, it's not. 

Several months ago, I was fortunate enough to temporarily have two health insurances. I saw a new rheumotologist and was prescribed several medications, one of which is Cymbalta. Cymbalta is regularly prescribed to help treat the pain associated with Fibromyalgia as well as nerve pain in those with diabetes. The effects of the Cymbalta, along with the other new meds I started, were quickly noticable. There were a lot of negative side effects the first month, but they eventually tapered off. My pain decreased and my mobility increased, both big pluses. After so long in such intense pain, it was a nice change. I noticed that emotionally I seemed to be shut off, but the relief was worth it to me at that point in time. 

My circumstances changed and I no longer had two insurance policies to cover my prescriptions. I had to stop my meds since we could not afford to refill them. The first to go was a medication that was created to lower blood pressure. It was prescribed to me for my Reynaud's Phenomena and worked fabulously! My hands and feet improved almost immediately! I noticed the changes when I quit taking the med after only two days. I was saddened to have the pain, tingling, stinging and other sensations return to my hands and feet. 

The next med to go was the Cymbalta. I begin to taper myself off of it since I figured anything that messes with brain chemicals probably shouldn't be stopped cold turkey. Yet, no matter how I tried to gradually wean myself, it seemed it wasn't gradual enough. I only had a limited supply of meds so I had to wean or would be faced with quitting cold turkey. 

Weaning myself off Cymbalta has been worse then when I got clean as a teenager from illegal drugs and alcohol. It's been worse then nicotine and caffeine withdrawl. I almost feel at times that I'm dying. The thing is, it's not really a physical problem that's driving me crazy. Sure, the pain has increased quickly and tremendously. Some days I know my pain is worse then when I started taking the Cymbalta! But, it's the other "stuff" going on that is making everything so unbearable. Below is a list of what I'm experiencing: 

Nasuea

Extreme food swings: Feeling of starving one minute and repulsed by food the next

Intense dreams 

Waking and having no idea where I am

Complete disconnect at times that makes me think maybe I'm really in the hospital in a coma or highly         medicated for some reason

Disorientation....it's hard to explain but it's almost like suddenly, my brain is shot full of electrical impulses and goes instantly dead. It then resets and I can continue on. 

Dizziness

Inability to walk or balance self

Intense "fluttering" in ears. Feels like something is inside my ears and vibrating/fluttering rapidly and forcefully. 

Twitches in body, face, eyes, mouth, even my tongue twitches. 

Inability to spell, type, write, etc (this is taking me at least 25 times longer then normal)

Extreme emotions and feelings of hopelessness, helplessness, rage, confusin, fear, sadness, etc

Extreme agitation and restlessness.....I feel like I HAVE to do something but when I get up to do something it seems that nothing will work! 

Memories of past events with full and complete recollection. When it happens, the entire event is clear to me....smells, breezes, colors, everything as if I'm in that moment. (If a drug that did just that could be invented there would be one huge market for it)

Lack of concept of time

Complete memory loss of some events happening during the day

Losing composure (crying that completely comes out of nowhere and won't stop....also laughing, rage, and other emotions that seem to come out of nowhere and completely dominate me)

Tremors, loss of muscle strength

Bowel issues (no detail required)

Flucating temperatures.....freezing to burning up to freezing again. 

Sense of.....well, I'm not sure how to put it. It's like I'm consciously aware in the back of my mind somewhere that I'm conscious, but everything seems so surreal that it doesn't seem possible.

I could go on and on but another one of the issues I'm having is I forget what I wrote as soon as I wrote it. So, I have to keep scrolling back up to see what I wrote. I also lose the thoughts before I can put them down. 

Tonight I decide to do some research cause quite frankly, I was getting downright scared! Come to find out, many many many people are complaining about similar withdrawl issues! They even have nicknames for some of the issues, like "Brain Zap". Realizing that these type of withdrawl symptoms are typical is quite a wake up to me. Sure, temporarily I didn't mind the lack of emotional disconnect if it meant a decrease in the extreme pain I'd been experiencing. The pain had lasted so long and been so intense I had to have some kind of relief. However, if this medication routinely and typically causes these types of withdrawl symptoms.........what exactly did this stuff do to me when I was on it?? What long term side effect will there be?? How long will I have to go through this withdrawl? 

I want to let all my fellow Fibromites know.................if you to are taking this med.............please don't stop it immediately! I can't imagine how horrible it must be to stop cold turkey. I thought the initial side effects were bad, but had I known this was what I would face now, I'd have never taken this stuff!

I know that without medications I'm headed down a nasty road. However, I'm happy to be off Cymbalta no matter what relief it gave me. I'll take the nasty road that I must travel ............. but it's gonna be with my own emotions, my own thoughts, my own brain..........not this jumbled, twisted, electrically zapped brain these withdrawl symptoms has put me through.

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! 

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.

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.