This is so hard to write about! Hence the length of time between Part 1 and Part 2. I really don't like writing about it for several reasons, one of which is it is hard to keep track of everything that has happened!! But like I said in the last post, I think it is good for me to get it out here since it is a big part of our lives. I do think it is somewhat therapeutic to write about it as well.
So, last time we left off at the spine surgery where they built the internal neck brace. I realized I forgot a few things that happened before this surgery, so I want to mention those first. After the second fusion attempt, I couldn't swallow without inhaling liquid/food, choking, etc. After x-rays and swallow studies, it was discovered that in going through the front of the neck to get to the spine, my esophagus was damaged. The flap doesn't seal tightly anymore and they couldn't fix it. So, I had to have 'swallow therapy'. While I was being x-rayed, I would swallow the dye/solution that shows up on the films. I swallowed many different ways until things worked right. Then I was on my own to get used to swallowing that way-it is my normal swallowing forever, more of a gulp with a lot of air to it. I'm usually not aware of it, it is second nature now.
The other thing I forgot about was continuing to have problems with sores and things not healing well, excessive bleeding, etc. I looked online and after much searching, found something that I thought fit my symptoms. I asked my PCP at the time, who had never heard of it, but ordered preliminary tests. Those came back positive for a form of hemophilia called von Willebrand's disease. So then I was sent to an oncologist/hematologist for further tests, and it was all confirmed. Basically what we learned is I am missing factor 8 in my blood, which means I do clot eventually, but it could take a long time if it happens at all. I had a few other factor problems that I don't remember now, obviously they weren't as big of a deal. This blood disorder meant I needed the factor replaced for major bleeding things like surgery, and any fall or big blow to the body could be causing internal bleeding. We also stopped my periods artificially, since they were a major problem, lasting too long and being too heavy. Anemia is very common with this disorder. Since I was diagnosed, just last year my daughter Alyssa (14) was diagnosed as well. When you have this disorder, you have a 50% chance of passing along hemophilia to your children. Poor Aly was the lucky one!
OK, back to the story. The spine surgery was done, everything was healing properly, and I felt HORRIBLE. Worse than before surgery. My entire body ached, my joints were stiff, and I was extremely fatigued. Everyone (doctors included) kept saying to give myself time to get over the surgery, but I knew something was not right. I remember in November, around Thanksgiving, 4 months after surgery, I thought I was close to dying. I had to use a cane a lot, and felt like crawling on the floor instead of dealing with the pain of trying to walk. Finally, in January 2007 I was referred to a rheumatologist, who ran a lot of tests. I remember getting the results the day before Valentine's day. I had a multi-organ autoimmune disease, and my numbers were so high they were off the charts. There are hundreds of autoimmune diseases such as rheumatoid arthritis for one, which are organ specific. In my case, my immune system doesn't protect me as it should, and instead attacks my own cells/organs/tissue, basically any part of my body is fair game. I don't have a specific name for my disease at this point except that it is a connective tissue disease and multi-organ autoimmune disease. There is no cure. Usually it attacks joints, muscles in the early stages and then organs later (often kidneys first, then liver but it could be anything). I was told that if I were to get sick it can get worse, being in the sun can make it worse, as can stress. When I was told it was terminal with no cure, I was numb. It just couldn't be. I remember going to Walgreen's for Valentine's candy for my kids, and just standing there in a daze, thinking this will probably be my last Valentine's day. Then the tears started once I got into the car.
A lot has changed since that day-obviously, it was not my last Valentine's day (I've had 2!), and I have learned a lot, prayed a lot, been prayed for a lot, and I'm on medication to help ease the symptoms. I've learned 'terminal' is relative. With this disease, it could be 20 years from now, or yes it could be next month if something were to happen and my organs shut down quickly. I've learned to relax about it, and take each day as it comes, as a gift. The only problem with that is this disease makes you feel like crap! I want to be loving life, but I'm fatigued and everything hurts. What did help me a lot was an old anti-malaria medicine, which takes the edge off of the symptoms. The side effect, though is that it damages the cornea. So, my eyes are checked very carefully so I will be pulled off the medicine quickly if changes are noted. I also have osteoarthritis in many joints now, so its hard to tell which disease my pains are from sometimes! I go to several doctors, and my organ function is checked every 3 months if things are going fairly well. So far, the disease has stuck to my joints/muscles, with a slight problem with my kidneys last Fall, which they are watching carefully. Odd things happen, like a few months ago I woke up with a torn rotator cuff! After several weeks in pain and not being able to use my right arm (just before/during Christmas!), the pastors and elders of our church got together and prayed for me. The next day, my arm felt significantly better, and healed completely soon after! We had been afraid I would need surgical repair. This was a big relief and praise on this rollercoaster of ups and downs, and a reminder of God's healing power.
When I was first diagnosed, I was told that there is remission, however the medical profession has no idea how it happens. But, the doctor told me that sometimes they can do chemotherapy or a bone marrow transplant to 'trick' the body into remission. I held onto hope for one of these treatments, and finally was told several months ago that I was not a candidate for them because of the way my immune system works (or doesn't work)-he came right out and said he was absolutely sure I would die from the treatment.
So, now I am on a lot of medication. I am on disability, which helps replace the income I lost, but is pretty much eaten up by medical/prescription copays. I am thankful for it though. I could sleep 23 hours of the day easily, but I don't. I do easy household chores and easy meals on good days. I try to smile and have fun, even though I'm tired and in pain. Some days are better than others. During cold and flu season, I have to avoid people so I am home a lot. I long for a 'normal' relationship with my family-being active physically together, but we try to find OUR 'normal'. I try to be thankful each day, and not get down about missing out on activities outside of the home. I am very thankful for my awesome husband Jeff, who has been through so much with me during our 20 years of marriage. Most days, after dealing with the most horrendous crimes against children, he walks through the door and is willing to help do whatever I need. Plus he has a second job just so we can get by. My kids are so understanding and caring, and I love them so much. My oldest two, Nick and Alyssa, still are homeschooled, but they are doing a virtual school and only need me to supervise. My youngest, Chad, is in kindergarten half days. If my health improves, I would like to homeschool him eventually. Our families are all far away, so we have been without extended family support through all of this, but we've had the support of wonderful friends and church family. I am blessed. I know God has a reason for my illness, and I know He can heal me if and when He chooses. I appreciate your prayers for me and my family, and I will try and update about my health when necessary!