Wednesday, November 23, 2011

I'm falling apart Part II

In April of 2008 we said good-bye to my Grandma Murphy. There are no words to describe my feelings for this woman. She was the back bone of our family and the one we all always ran to in our times of despair and happiness. She was our rock and now she was gone and we were all distraught. I'm not sure if her death and the grief and stress that it caused me is what caused my Crohns to flare or not but I imagine it didn't help me. Lord forgive me for even thinking it or writing that down here on this blog. If she for one minute thought she was responsible for making me sick she would be rolling in her grave. She scolded us all in the hospital after we all realized we were nearing the end with her, for crying over her. Even upon her death her main focus was her two boys, her daughter in law, and her three girls. Forget the rest of them...nobody and I mean nobody, loved her the way the six of us did and I can guarantee that they don't sit in their homes even to do this day still crying for her. Crying like I just did this past Thursday. Wishing that for just a few minutes I could have her back. Have her back in her house, in her recliner, with her stash of candy just down the hall. To be able to stand beside her in her chair, bending down to kiss her good-bye, while squeezing her hand. Her small, soft, cold, wrinkly hand. The hands that cooked so many meals and held mine so many times.
This past Thursday is when my reality set in. It only took three years. Three years of suffering endlessly, of taking medications with side affects far worse then my disease. The mass on my liver they discovered back in 2005 is just that, just a fatty mass, not cancer. I dodged a bullet. I dodged a bullet only to begin taking medications that may one day give me cancer. I was sick but not miserable between my diagnosis and before my Grandma's death. But Grandma passed away and with her death brought the symptoms of this disease that I thought I would never deal with.
Blockages that required hospital stays, pain and bloating that is severe enough to drop an elephant to their feet, exhaustion that just can't be described. And nothing helped me, none of these terrible medications that may one day kill me, not changing my diet. NOTHING! And through all of this, my Grandma's death, being sicker then I've ever been, I also faced another challenge. I was desperate to become a Mother. I wanted what my Grandma had...I wanted that love and compassion...I never wanted to be alone again. We had been trying to conceive a child even before our wedding. We actually started trying casually the day we learned our offer had been accepted for our home. We figured we had all these extra bedrooms...we may as well put them to some A pregnancy never happened though and then I got sick and distracted and finally in 2009 when I just couldn't handle everything all together anymore I gave up. I said to God, "God, if it's meant to be, I know it will be. I'm going to get better and then we're going to see Doctors to fix whichever one of us has the problem and then we're going to have a baby!" And with that a 300 pound weight lifted from my shoulders and with a sigh of relief I moved on. And just a few weeks later Addison Grace Blankenship started growing inside me. I was still sick but God blessed me anyway.
My pregnancy was pretty uneventful. Like I said I was still sick but with each month my sickness eased a bit. I gave birth to my healthy baby girl in February of 2010. I'm not sure if it was because I was on cloud nine from finally becoming a Mother or what, but I don't remember if I was still sick or not. I'm sure I was but since I had this bundle of joy to occupy my time and thoughts I must not have dwelled on my sickness much. I was so overwhelmed with joy that three months later we did it again, we were pregnant with our Cadence Leah. For more years than I want to remember we struggled with infertility, we questioned whether we would ever be blessed with the joy of parenthood and here we were, not only parents to our beautiful baby girl, but we were going to be parents for a second time. I do remember having issues again with my Crohns, like I said, I don't think they ever really went away, I think they just got muddled in the back of everything else that was going on in my life. I was a new Mom, was expecting my second child, had just lost my job, and had just made the decision to walk away from our home and move in with my Mom in order to save money and stay at home with my children. I had a few episodes during my pregnancy with Cadence that left me unable to care for Addison. I truly believe that God works in mysterious ways. I know God played a big part in the timing of my pregnancies and my lay off. There's a reason why all of this happened when it did and I now know why we are living with my Mom.
I was one of the lucky few women who's Crohns disease tend to go into a remission like state during pregnancy. For that I am thankful. Unfortunately I am one of the many who go into serious flares after delivery. My body didn't really have time to flare after Addison's birth before I got pregnant again. But boy oh boy, has it caught up with me.
I've been in this flare since 2008 and now I am at a point of no return. In April of this year the symptoms that had left me so miserable before Addison's conception, slowly started showing their ugly faces again. Pain, nausea, bloating that is so horrendous you think your stomach is going to explode, constipation followed by extreme bouts of diarrhea, intestinal blockages, fever, night sweats, vomiting, weight loss, blood loss, and vitamin deficiency. All at the same time, at all hours of the day...morning, noon, and night. Never any relief.
My first hospital visit of the year took place in August where they discovered after all of these years of severe inflammation, my colon had started to form an abscess that instead perforated. I had a hole in my colon which was allowing my waste to leak into my body. I had a major infection, required three blood transfusions, and stayed for four days in the hospital. The perforation was so small that the hope was that anti-biotics, steroids, and new medication to treat my disease would allow it to close without surgery.
I was back in the hospital for another four day stay in September after a CT scan showed that the perforation was still there. I was once again released without surgery and on another round of medication. Between the start of this process and now I have lost almost fifty pounds which is unheard of while on steroids. I have had days where I have begged God to take me home and then begged for forgiveness for my weakness. I have experienced pain that is so unbearable I can't be in the same room as my daughters because the slightest touch or sound of their whines or cries throws me into a panic attack. I have had moments of dread at the thought of my husband returning home from work because I am so physically exhausted the thought of making him dinner or asking him how his day went is just to much for me to handle. I spend hours by myself in the evenings laying in my bed while my family spends times together in the playroom, all because the pain is so unbearable that I need complete darkness and silence to allow me enough strength to concentrate on getting through it. I sit rocking back in forth in my bed with a fan blowing for those moments of when my fevers break and I am drenched in sweat. Moments during the night where my fevers get so high that my body shakes so out of control it hurts. Those very same moments where I feel so cold that no matter how many blankets I lay under, no matter how thick my socks, or heavy my sweatshirt...the chill just won't go away. And then my baby awakens from her sleep looking for her last bottle of the night and I have to beg God to give me the strength to get out of bed to get her one and then beg him once again so that she'll fall back asleep right away, all so that I can be miserable in peace.
This past Thursday, when I cried for my Grandmother, I cried because it's time. My biggest fear has arrived, my reality has set in. My luck has run out, or at the least, I've realized that it's never been about luck. I need surgery. I need surgery in order to get better, yet I'm so ill, I can't have it.
There are no more medicines to fix me, only to heal me enough to withstand a major and very complicated surgery. I can have the surgery now, but a surgery now means being hours away from home. It means wearing a bag attached to my side collecting my waste. It means losing feet upon feet of my intestines. It means being hospitalized for weeks. It means months of recovery. It means a second surgery in the future.
For now, I am waiting. I am waiting in hopes that my new medication, that I will self inject, will start to heal me. I am waiting and praying that no further damage is done to my kidneys which have been affected. I am waiting in hopes that a surgery can be delayed long enough that the surgery can take place here in Dayton. I am waiting in hopes that this medicine does heal me and that I won't need a bag. I am waiting in hopes and prayers, that these next few weeks that my Doctor has given me to show signs of improvement, that my suffering is minimal. I am tired of suffering. I'm tired of days where I can't properly interact or take care of my girls and husband. And mostly, I just really, really want to enjoy my holidays with my family and I would really like to do it without having to drug myself just to get by.
Even through this all, I am constantly reminded that things could be worse. While there is no cure for my disease, it is treatable. The side effects that I will one day face because of this disease aren't something that I'm looking forward to, but at least I will be alive. I will be alive, and while I may not be well, I will be able to watch my children grow and prosper. I thank God for that and I scold myself for cursing his name when I am at my darkest depths. One of the hardest things about my disease is that it is invisible to most. I've lost all of this weight and everyone keeps complimenting me on how great I look. When I fix my hair and put on makeup and have a smile on my face I look healthy. Only my closest family knows the truth. They are the ones that can tell by the look in my eyes or by the way I have my hands clenched when I am not doing good. They are the ones who can tell by the sound of my voice when I'm trying to get through the pain without bringing attention to myself. They are the ones who have walked this journey with me. They have spent countless hours waiting for me to get out of the bathroom, sitting by my bedside in the ER and hospital. They are the ones that know that when I am around they can't fiddle fart around in the bathroom because we never know when I will need to use it. Many would find that funny, but they know the anxiety it gives me and they take it seriously. I swear, if it weren't for my mom and husband right now I would have been to the hospital many more times this year. They have picked up the slack when I have dropped the ball. There have been a few days these past few months where I literally just couldn't get out of bed. I could barely raise my head from my pillow. On those days is when my Mom turns into super Grandma and takes over caring for the girls while I sleep it off. Its those days when I realize that I lost my job for a reason, and that there is a reason why we walked away from our home and moved in with her when we did.
It's because God knew this was on my horizon...

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