I debated on creating this blog because I have no answers to what is going on in our lives. But the more I am learning, we learn best from each other's personal experiences. So here I go....
I find peace when I am at the beach! It's one of our highlights of the year when we pack up and leave reality behind. I love to watch the waves roll in. The different shades of the water and the millions of shells that come in and out with every wave. At this point in my life I would love to pack up and leave reality behind....
A couple of weeks before Thanksgiving break, I went to find our family a new general practitioner and to see why I felt the way I did. For a year or two I just haven't felt right. But lately the fatigue is just getting to me. I had no idea that would change my life. She sat down and began asking questions that led her to do a full blood workup. She was concerned about my blood pressure as well and asked me to keep a journal for the next couple of days. The following Monday would lead us down the road we are on. Not only did she discover I have high blood pressure, high cholesterol, she noticed my liver enzymes were high along with a few other tests that didn't seem right. We began discussing why I felt I had gall bladder issues and all the symptoms I had felt for years. She sat down and told me she felt that I had an auto-immune disease. Hello what? I completely blocked anything else she said from then on. I just came in because of a few little things!
I left with knowing I would get a call from an Endocrinologist. She felt it wasn't gall bladder it was my liver causing me the pain along with everything else I was feeling. I remember getting to the car starring out of the windows. I immediately spoke to God and asked for his hand on this journey, even though I called my mom I knew it was he that had control over this.
The next week I felt as if I was getting the flu. My body ached like the flu, I was nauseous, my eyes were terribly blurry and just the movement of my legs and arms felt like a 400 pound person hanging on each. I laid in bed that whole weekend. That Monday was the change I had not expected!
The following Monday, I rolled out of bed, literally. Forced myself to take a shower, put on my clothes the whole time thinking; I have the flu! I began to dry my hair and the pain in my arms I had never felt. I became nauseous and called for my daughter to call her nana. I couldn't move! Laying in bed I thought what is wrong with me, am I dying? Any move made me out of breath and nauseous. Mom drove me to Direct Care and I saw my doctor. She proceeded to explain that this is an auto immune flare up. She gave me something for the nausea and we discussed rest is the best thing.
That week I saw the Endocrinologist and he ran more tests. At this point I had probably had at least 15 blood tests. He called within days wanting to do a liver biopsy. He said he needed to figure out if it was the liver causing the inflammation, or the inflammation making the liver inflamed. The biopsy found that I have a fatty liver and he sent me to a Rhemotoid Specialist.
That is where we are today, deciding what this is that I have. I have had 15 more blood tests done and go back the 12th for hopefully the definition of what I have and a treatment plan. Right now, we are looking at Lupus, Sjogren's Syndrome or Hashimoto's Thyroiditis. I know Right!!!! But no matter which or what an auto immune disease is not curable, it can be managed with medicine. However, I will never know when a flare up will come and it could be months or years before I reach remission.
We strive our whole lives to be normal. We want normal for our babies as well. What is normal? I long for the days that normal was in our home. I no longer can put Emma in the shower with me and wash her hair and mine. Taking a shower, getting dressed takes every breath out of me. When I dry my hair I have to take breaks so my arms don't give out on me. Walking to the laundry room taking clothes to place in the washer and dryer, wears me out. The pain all over my body is indescribable. I never imagined that I would say my liver hurts. LOL Buying groceries today made me so sick! I miss the little things we moms do and don't think anything of it.
Looking back I see things that I can relate to this disease. It all began after I had Luke and from then each year something has happened and now it is here facing me. Yes I know its not the C word. But when you are looking at your life changing and reading what could happen in years to come its scary. I have had so many emotions with this. Some days I can be happy, others sad and most of the time confused. My brain doesn't think the same way. I have trouble getting out what I want to say and if you speak to me I won't remember it by the time we are through. Nausea comes and goes all day and even eating makes my jaws hurt some days. I have lost 7 pounds in 2 weeks! Yes that is a great diet plan, but believe me I would have rather not lost it the way I have. Sleep is no longer a norm. It takes forever for me to get comfortable and to fall asleep then I pray I at least get 3-4 hours a night.
If it is Lupus, I know we all know someone that has it. But that doesn't help. It's still my life! It's still a disease that I have! My life will forever be changed! Lupus is unexplainable, its a mysterious disease and affects each person differently. We know it has attacked my liver, but I pray my kidneys are not harmed. I have so many questions for the next appointment. But for right now I will keep researching, I will keep answering every question my kids have, I will keep trying to go on. It is very hard, unimaginable hard!
So if for nothing else, maybe this blog will be a place I can vent, or a place Luke and Emma can learn from, or a place that can help someone else. But if you are reading, I ask that you pray for all that suffer from this disease. Because to be ill is a very lonely place...
