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. ;)

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.

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!