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.

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.

Chronically Ill Parents and their Child's Life

My older two children are very fortunate to attend a support group. It is a group that offers support for children who have a sibling with special needs. It has been a great help to my children when addressing the special needs of their younger brother. Yet, what they don’t have is a support group for living with a chronically ill (and in pain) mother.

My children have helped me tremendously through the years. When I was first diagnosed with Mixed Connective Tissue Disease (Lupus and Polymyositis), Reynaud’s Phenomena, and Fibromyalgia in 2003, my children were 6 years and 3 years old. It wasn’t long before I was to weak to walk My neighbor came over and took my bed apart, placing my mattress on the floor. My 6 year old son and 3 year old daughter would lay a sheet on the floor beside the bed. They would then roll me over onto the sheet and pull me to the bathroom along the floor. They fed me and brought me my medications. The full burden of caring for me was on them for a very long time.

So, what about now? Do they need a support group now? With a loud, resounding yell I say “YES”. Let me tell you a little about our day.

First thing in the morning, my now 10 year old daughter comes to wherever I managed to fall asleep at (I sleep on the floor often due to the bed and/or couch hurting to much). She spends at least an hour working out knots in my muscles. She massages, puts pressure on, stretches and does whatever she can to ease my pain and get my muscles working somewhat. She has figured out through the years how to stretch a particular hard to reach muscle. She knows how to stand on me or sit on me to relieve pain and ease knots. She’s discovered how to use her body to help her in this process.

While my daughter is spending the first part of her morning working on me, her older 13 year old brother is attempting to take care of their younger brother. He’s trying to figure out what his 4 year old, sensory stricken sibling will eat for breakfast. He’s trying to convince him to take his daily medications. He’s trying to transition him into the start of the day, all while trying to keep him away from me (he likes to join in and jumps and climbers on me causing more pain).

Once the knots are worked out as best as they can be, my daughter helps me onto the couch in the livingroom. She then brings me a bottle of water, a soda, and my morning meds. After helping me take my meds, she then goes toget her own breakfast (I’m usually to nauseated from the pain to eat breakfast).

Both the older two children knock out chores after breakfast that most stay at home Mothers do. They clean up after breakfast and make sure the common areas of the house are clean. They start laundry and clean their rooms. About the time they are finishing up, I am starting to get to a point where I can move on my own. I start feeling a little less sick and ask one of them to make me something to eat. They then start on schoolwork.

There are several more things my children do in the course of a day that other children don’t have to. My daughter brings me my clothes each time I shower since taking a shower drains me so completely. She also helps me to put on my shoes when I’m unable. She combs my hair for me. Both of the children find items I misplace daily for me. They prepare breakfast and lunch most everyday and assist their father in preparing dinner each evening.

With our finances as they are, and my being unable to drive, the children don’t get to do a lot. They don’t have the funds to buy things they’d like, nor a way to get there if they wanted. Yet, they still help me.

Don’t get me wrong, my children are by no means saints. They get attitudes, roll their eyes and disobey at times. We have the same battles over chores that any other family has.

I am not always observant to their plight. I don’t always notice that, even though they didn’t get the chores done like I would have, they still took care of me and their 4 year old brother all day.

I would love for my children to have a support group that they could go to and meet with their peers. A place where they can talk about their lives, their frustration, and their feeling under appreciated. A place where they can talk about living with a mother whose memory is affected and often can’t speak what she is trying to say. A place where they can talk about how much they have on them, and meet other children in the same situation.

I am truly blessed to have the children I do. My daughter takes over getting our son ready to go to church each Sunday. Our eldest son handles most meals. Sure, the kids give me a hard time about keeping their rules cleaning and having to clean up after their little brother………..yet, they still take care of both myself and our youngest son without complaining.