Chronic Illness: Who Needs a Weather Report?

I have A LOT of new information that I have discovered and researched over the past few months that I DO at some point want to share, but that is not at all where my head is today. As a matter-of-fact, my head is pounding so hard that I have taken three Fioricet/Butalbutols, one pill that I found of a generic headache medicine, Ibuprofen and of course am sipping on my Dr. Pepper. My ears and jaw still hurt, and my head is still pounding, but my mother would say that I have already done a good job at killing my liver off with that group of meds. I have plans to take a bazillion Milk Thistle’s when I finish writing, that ought to help the liver. I do not do this kind of headache therapy every day or anything. It is just when these very bad ones come on. This morning I woke up to the pounding and even opening up my eyes was painful. That was when I realized that the rest of my body was paying for it as well, you guessed it FIBRO FLARE-UP! Awesome. Between the clocks going forward an hour (one less hour of sleep), Husband being out-of-town with Pickle Boy antler hunting and not due to be home anytime soon, I realized I was going to have to get the other three to church on my own. Yeeeaaaaa, that was not going to happen. I tried to get them to wake up for church, believing that I could somehow drive them over to church and drop them off, but I could barely hold up the wall as I walked from room to room. The girls were sound asleep. Try as might I to wake them, the sound of my own voice saying their names, even gently was going to make me pass out from the pain. I made my way back up three sets of stairs, thanked the wall for its support and laid my head back on my pillow. Oh how I love my pillow sometimes. Cool, snuggly head support. I am quite sure my head was going to fall off at any moment, or maybe explode from the pressure mounting its attack on my forehead. After awhile I could open my eyes again. The three munchkins were up and going, and I told them I wanted them to at least attend church today so that they could bring me back all that they had learned. I also was finally able to open the curtains to let in some light. The light was short-lived however and after returning home from dropping off the kids and falling into my comfy corner of our living room house I saw the culprit of my agony. Dark, grey clouds headed right for my home. My head is better than all the instruments at a weather station. I can actually predict based upon the pain in my head when a front is coming. It does not matter how beautiful and blue the sky might be in the hours before-I KNOW! My head and body can beat out a meteorologist EVERY SINGLE TIME! I have a whole entire body of sensitive instruments that can tell you if you should go camping, fishing, or just stay home with your Sherpa blanket and watch your favorite show. I know this post has too many commas, and possible has grammatical errors, but until this front moves along and takes the pressure out of my face this is the best that I have got. I know it is the Sabbath, a “day of rest” according to the Lord. I plan on using today for just that. If you feel it in your body, if you can barely move, if you see the grey clouds of darkness headed your way then perhaps you should too.

I simply was not sure certain what I would say. I had no idea where this all would take me. I do not want to call it a journey, although that would be accurate, but perhaps a better word for it would be "hike" as it seems all uphill. I battle with my own body each and every day and because of that I am frustrated, tired, fatigued, angry, in tears, insecure, and to be honest I am fat.



So here I am. I am finally writing it all down. You know how my battle began. Now I want to share with you how I am waging this war. I refuse to just lie down and accept the life-sentence that has been given to me! I will however accept the "gift" of chronic illness which has been given to me. Recently, a friend of mine who also has chronic illness (Hoshimoto's Disease) shared something which has changed my perspective of the diseases which seem determined to bring me down. She said that after reading an article on another blog (oh how I wish she had remembered which one, and if she does I promise I will post it.) she was taught that chronic illness is a gift! And then she pointed out that if it were not for my Fibromyalgia and IC that I would not be able to stay home with my children, but would most likely be working full-time. I had not thought of it that way! I had just been telling her how grateful I was to be staying home with my children. That yes, I would most likely have to apply for disability. Yes, we were completely strapped for money due to all of the medical bills. Yet now I really know my children.


I know what makes them laugh, cry, worry, stress, who their friends are, what they play at recess. It is seriously the most fulfilled I have ever been as a mother. Not necessarily as a wife yet (working on that one), but definitely feeling as if I can serve and support my children in a way that I have not known before except in fleeting moments. That is a terrible way to have a relationship with these little ones. I have felt such a desire to be with my children in this way over the years. Spending real, quality time has always been something that I would hope for daily, but inevitably I would let them, and myself down. I was always SO busy, so displaced as there were an increasingly large number of demands placed upon my time and energy physically, emotionally and spiritually. Now, I often times can do nothing but sit on the couch and wait for my children to come home from school and tell me about their day. It is a real conversation, not something in passing...no more fleeting moments of intimacy with each of them. I actually try to muster up the strength to take them to school or pick them up, just so I have them all to myself! I did not have children to be a hit-and-miss-mother, and even though I still have to govern energies effectively, I believe that the score has a few more hits than misses these days.


So here I am. Grateful for my pain. Grateful for the days that I can barely move because those are the days that I get extra kisses and cuddling. I can grab a child, hold them and ask how their day was, and truly listen to each child's answer without the distractions of a full time job.


My Bishop told me months ago that my health challenges, my chronic pains were "given to me by the Lord." I had not idea what to make of that until now. He is so right! It is given to me by the Lord, it is a great gift given to me by the Lord.


And...
The Lord knowing me must understand that even though I am thoroughly enjoy these gifts, it does not mean I am going to quit fighting the good fight! It simply means that the Lord has reminded me why I fight! Today, I am grateful for my gift of chronic illness.


How has your chronic illness been a gift for you? Take a moment. Think about it...it took me months to understand, but it is there. I promise. It is there.

MY BODY TURNED ON ME

I was doing a simple task.

Sweeping.

When suddenly my hands began to curl up, as if I had been carrying plastic grocery bags with gallons of milk in them, I could not get them to open up. As my fingers started to turn towards my palms the broom fell from my hands and bounced loudly off the hardwood floor. I shook my hands, hoping that whatever had caused this would somehow come to its senses and send feeling back into my appendages, and even after a quick rubdown my hands were tingling as if they had fallen asleep and sharp pains stabbed the backs of them, as if sharp toothpicks were being plunged into each vein repeatedly. I thought over in my mind why this could be happening? Being the daughter of an MD, and having both a mother and grandmother as Registered Nurses I was trained well to “assess the situation,” but then the feeling passed. I picked up the broom again and started where I had left off. My thoughts took me back, reviewing the past two or three weeks…

“This had happened before, hadn’t it?”

“How many times did I drop the pizza cutter? The steak knives? A can of…whatever as I was placing on the counter?”

Too many to count.

“Maybe I was just getting old? (I was getting ready to turn forty after all.)”

I realized that it was time to mention this to the Coach (my husband). He was in his Man Cave int he basement of our rental home, reviewing game film.

“Probably nothing to worry about.” I told him, already brushing it off. “Just thought you should know, but I probably should get it looked at…what do you think?”

“Couldn’t hurt.”

And thus began nearly two years of tests, misdiagnoses (which almost lead to unneeded carpal tunnel surgery on BOTH hands), Cortisone shots, MRI's, over $8,000 in medical bills, and finally the diagnosis of diseases that the medical community are calling “syndromes.” This simply means that medical science has not yet been able to identify the exact cause for pains like mine. Oh sure there are "helps" for MD's, guidelines as to what it "probably" is or "might" be, but each person suffering from these conditions is so different that pinpointing the root cause for our medical community is like finding a needle in a haystack of nerves, nearly an insurmountable task. Coming to one conclusion for so many varying degrees of a disease (but we will discuss this more later), and to find a cure for something that is so diverse in it's manifestations in each body is close to impossible. Yet, I have faith.

My ability to hold a broom has grown into my inability to wake up on any given day, or make dinner for my family. It is that an educated woman, a former public speaker can no longer find the right words to explain to #4 (my little boy, 4 years) what we are having for lunch. “I will make you a sandwich with the nut stuff and…fruit stuff on it.” (WHAT?!) I cannot see every detail of my child’s face on a stage during a school music program, or Coach’s hair (what is left of it. Lol) as I cut it (don’t tell him I take a guess. Lol).

I have finally found an AMAZING GP here in Wyoming who has been working diligently with me, determined to help me alleviate or eliminate the things that are causing what has now become “chronic” pain and symptoms. Which is good because the prognosis is…

This body, this pain riddled body will NOT be free of the fatigue, sharp, stabbing pains, migraines and cluster headaches, constant tension (the kind that feels like my head is going to snap off from my neck), lack of sleep, burning sensations, tingling, lack of muscle control, depression, anxiety, or constant cramping (which is funny since I don’t have a uterus…one of many things we did before knowing what was really going on)…AS LONG AS I LIVE.

Heaven sometimes looks pretty good.

The whole being a spirit thing would really work out for me.

IF I did not have #1-#4 and Coach. I would miss them terribly.

THIS IS NOT A SUCCESS BLOG. It is a SUPPORT. It should also be used for comic relief.

I have SO much to get out and share. And I feel like there is JUST not enough information when SO many people are suffering.

What I learn I will share. You may have already seen it, or know it, but perhaps we can start to collaborate and come together to overcome these things that keep us prisoners, tortured by our own bodies.

I want to be free of this body, but since I am stuck in it, I might as well use this to do some good.

Please join me! Feel free to comment. Try to share a humorous story about your chronically inflamed body. Might as well laugh a little…crying will only give you another headache. J