Fighting Back- On the Battlefield with My Body

   Fighting for your life? What does this mean exactly? To me, it means I am fighting three rare forms of vasculitis, osteo-arthritis, possible rheumatoid arthritis, among a plethora of other health issues (anxiety, depression, side-effects). Really, I am in two separate battles. One is physical...but at least for the next few weeks I am on a break from the chemo. When I was on the chemo, it was coursing through my veins, literally killing everything in sight. The good news is the bad cells were taking a big hit. The bad news....so were the good cells. I welcome this break from chemo, but hate that now I have had to trade it off it with high-dosed steroids. Basically the steroids mimic the chemo in a way. But, instead of losing weight like I was on chemo, I am now gaining weight. I have developed hypertension, thrush and I am at an increased risk for infection because the steroids act as immunosuppressive, just like the chemo. 
   The other battle is mental. It is 100% in my head. I am standing on a battlefield. On the opposing side there is chaos and disarray. There is death, despair, pain, defeat, mockery, and fear. They are really big monsters chomping at the bit, and the scariest part of it all, they live in my body. They want to destroy me. Looking at them, I wonder, how can I possibly defeat them? They are so much bigger than I am. I am small and weak. Then I am reminded that I am not alone. There, standing in front of me, is Jesus Christ. He is shielding me! He has taken every attack for me and is still standing strong, even when I cannot find the strength to stand on my own. These monsters look at Him, and will eventually drop to their knees. They cower in fear. My monsters will soon realize they have no power here, they cannot get to me because Christ lives inside of me. No matter how sick or weak that I get, Jesus will always be there by my side protecting me. 
   I saw my primary care physician today. My nausea and vomiting has become so bad that it is crippling. He believes that the vasculitis is spreading to my GI tract. So, you guessed it....that means I am being referred to a gastrointestinal doctor. That brings my total up to 13 doctors. That has to be a record or something. He started me on Prilosec and gave me 5 refills for my Xopanex. Of course, he gave me the dissolving nausea pills because they supposedly work quicker, but I swear to you, the taste is enough to make me want to vomit. He upped the dosage on my anti-depressant medications and my Xanax. With any chronic illness, it is natural to acquire anxiety and depression. My whole life has changed in such a short period of time. It has become quite overwhelming to say the least. He added another muscle relaxer and refilled my pain medicine for my osteo-arthritis which is caused by my vasculitis. I love my PCP. I can tell him anything and he loves the fact that I am so educated about my disease. I am the only patient he sees with vasculitis.
   We grabbed pizza for the kids for dinner because I just was too weak to cook tonight. I did manage to do three loads of laundry today and fold them...and I even put them away. That is a major accomplishment on my part. The kids cleaned the house from top to bottom for me. I have begun a reward chart for every-time they help me, which they help me every day. I do simple things as rewards as I cannot do much. For instance, we are having a family game night tomorrow since they did such a good job of cleaning and disinfecting everything today. I am definitely looking forward to our time together. 
   I have been asked many times what went through my mind when I got my diagnosis. To be honest, I had no idea what vasculitis was. So, in the beginning, I thought it was something that could be managed easily. After my last stay in the hospital and being told that vasculitis is not curable, manageable for a little while, but not curable and terminal; that is when my diagnosis hit me hard. It was like I had one thought, broken up into many layers. The thought that stayed up front and center were the beautiful faces of my children. Behind that, the numbers; how old they would be when I die (because I tend to think the worst). Events I would miss entered my mind. And then of course there were the memories which seemed to flood my thought process for the first week after being told I would eventually die from this disease. 
   One of my fondest memories was when I was sixteen years old. I found out I was pregnant with my first born child and was terrified my mother and my grandmother would be so disappointed in me. They were in fact, very supportive of me. My mother took me baby clothes shopping soon after it was confirmed that I was pregnant. And on my 17th birthday, she made me homemade lasagna, spice cake, and bought me a beautiful heart shaped necklace that said "daughter" on it. They weren't disappointed in me because they believed in me. I graduated high school, went to college and raised a terrific young man. I have so many great memories to share with all of you. I think I will include at least one in each of my blogs...reflecting back on good parts of your life is always therapeutic. 
   I ask my kids every day what it is they are thankful for, and the answer is always the same; "you mommy!" It doesn't matter how much I have fussed that day or wasn't any fun; I am still their number one. The thought of their grief is more than I can bare. When I got that news, and saw my life laid out before me, the little things suddenly became the big things. The hard things suddenly became insignificant. Those times were easy. This is HARD. 
   So now, as I am waiting to have my open-lung biopsy, I find myself often reflecting. I don't ever want to forget how valuable these precious little moments actually are and how absolutely blessed I am to still be here. These are moments I won't ever forget. I am sharing them with you because I want you to thank God every day for the little things in your life, because they truly are the big things.
   Having to tell my kids why mommy was so sick, calling my mom every day and trying my best to keep her updated as to what is going on, Kevin going with me to my first treatment when he had been working all night and had no sleep, contacting friends I hadn't seen or heard from in years, and trying to build a better relationship with my brother and family.....these are just a few of the little things I cherish and battle with. Kevin refuses to go to sleep until he knows I am asleep. There are 100's more...which believe me I will continue to share with you. I will share them with you because no matter what dilemma or trial you are going through, I want you to see the true beauty of life. There are always things to be grateful and blessed for. Even when things are really hard, we are blessed. 

John 14: 1-4

“Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.”