Living with Autoimmune Disease
It seems that for the most part of my life I have always had some sort of health issue or disease. Without making this post longer than what it needs to be, I’ll try to hit the main points of this part of my life in living with autoimmune disease. It’s been a long, tiring journey. A journey that although at times has weakened my flesh, it has strengthened my faith.
My mom said that when I was little and had learned how to walk, I was diagnosed with an illness that caused me to fall a lot. So much so that she would have to keep me in my walker. Thankfully, this illness didn’t last long. After some time and prayer, the doctors cleared me, and I didn’t have any more issues with it.
Scoliosis
In fifth grade I found out I had scoliosis. Scoliosis is when the spine, instead of being straight has a curve to it. The different degrees of curvature vary from person to person. I remember looking at the brochure they gave us, and breaking down crying. It was horrible! They really shouldn’t show those pictures to young, pre-teen girls. I saw pictures of severely deformed bodies. My only hope was to wear one of the few back braces that they offered that almost looked barbaric. In my naïve, dramatic mind, I figured my life was over.
I was fitted for a hard, plastic back brace that covered from my arm pit down to my waist. It wrapped around me, covering my whole back and chest, closing in front with Velcro. I had to wear it all the time, except for at night. It was hot, and I had to wear very loose clothing, so it wouldn’t show. If you hugged me, you could tell. I wore that for my fifth-grade year, and most of the sixth. It was a great day when I no longer had to wear it.
Hashimoto’s Hypothyroiditis
In the sixth grade, I was diagnosed with Hypothyroidism. Hypothyroidism is when the thyroid doesn’t make enough hormone to function properly, causing all kinds of annoying symptoms like fatigue, weight gain, hair loss, dry skin, and cold hands and feet just to name a few.
Later, I was told that it was Hashimoto’s hypothyroidism. Hashimoto’s is an autoimmune disease which is a problem with your immune function that results in symptoms of hypothyroidism. I take thyroid medication that I will take for the rest of my life.
The rest of my teenage and young adult life I really didn’t have many other issues, aside from the usual broken bone or torn ligament from trying cheer stunts with friends. My big issues didn’t come till I was already married and had my first two kids. In 2003, I started noticing muscle weakness when doing everyday tasks and my fingers would turn white when I got cold or nervous. I went in to my doctor and after some blood tests he told me I had Lupus. Lupus is a disease where the immune system attacks itself. Its symptoms can vary, but mainly include joint pain, fatigue, and can also damage organs. I was put on an immune-suppressing medication and referred to a rheumatologist who monitored my medication and disease.
GERD
I started having heartburn and severe stomach pains. My doctor scheduled gastrointestinal tests that determined I had GERD. GERD stands for gastroesophageal reflux disease. I also had gallstones, so my gallbladder was removed and I was put on more medication. If I don’t take my medicine and eat spicy food, you can find me in a fetal position in pain.
NASH
After some blood tests came back abnormal, I had a liver biopsy that led to the diagnosis of N.A.S.H. (Non-alcoholic steatohepatitis) which is liver inflammation and buildup of fat in the liver. Most people who have a “fatty liver” don’t have any symptoms, but NASH can cause inflammation and damage to the cells in the liver which can lead to scarring and can even lead to cirrhosis.
Mixed Connective Tissue Disease
I started noticing other symptoms, and was told I didn’t have Lupus, but instead had MCTD (mixed connective tissue disease). MCTD is a disease that combines the symptoms of Lupus, Rheumatoid Arthritis, and many other autoimmune diseases that affect the joints, skin, muscles and internal organs. Basically, your body attacks itself and they put you on medication to keep it from doing so. Which also means, if you’re suppressing your immune system, then you’re more likely to catch colds and infections.
ITP/IVIG
http://www.webmd.com/a-to-z-guides/immunoglobulin-therapy
In 2009 my body decided to have issues with my blood and platelets. Platelets are what help your blood clot when you get a cut and start bleeding. My blood count had dropped and my platelet count was 10,000. A normal count is 150,000- 450,000. I was taken to the emergency room because my period had started and I was bleeding so much. I had to have a few platelet transfusions because my body was chewing them up as soon as they gave them to me.
After about a week in the hospital, I came home and would go in periodically for IVIG treatments to help with my blood counts. I then continued to see a blood specialist called a Hematologist who diagnosed me with ITP blood disease. With ITP it is very easy to bruise and bleed without stopping.
Pregnancy Scare
So, there I was, making frequent visits to different specialists while working and taking care of my two children with my husband who was so supportive through it all. It was rough at first, but once things stabilized, it got easier to manage. I eventually even got my energy levels up and started feeling pretty good. Maybe that’s what brought our third child into the mix!
Our pregnancy was considered high risk. I started having contractions in my first trimester and my cervix began to dilate giving us a 50/50 chance of losing our baby. My doctor put me on bed rest and with the help of my husband and my mom that’s what I did. Thanks to answered prayer, the contractions stopped along with the dilating, and the rest of the pregnancy went well. After I delivered my baby, I didn’t even get a chance to hold him. I started to hemorrhage and was rushed to the operating room to have a D&C. I came very close to having a blood transfusion, but thankfully ended up not needing one and got to hold my baby boy.
Sjogrens
Last year, in 2017 I noticed my eyes and mouth drying out more than usual. A few times, my eyes dried out so much that I ended getting a tear on my cornea, that I might add was very painful. I have to say, at least the recovery time consisted of eye ointment and didn’t usually last more than a week or two. I started having other symptoms and saw my rheumatologist who diagnosed me with Sjogren’s disease. Sjogren’s is another autoimmune disease that affects moisture producing glands. I’m thankful that I didn’t have to take another medication. Instead, I just carry eye drops and gum with me and use a special mouth wash and mouth spray that helps with the dryness.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26
It’s been fifteen years, since diagnosed with my main autoimmune disease. I won’t lie, it’s been a long and tiring journey. There have been times when I let self-pity and fear take over. Self- pity usually ends fairly quickly when we realize there are others worse off than us. Only faith can extinguish our fear. Your faith must be bigger than your fear.
For most of us, we focus more on what we’re afraid of instead of focusing on growing our faith. When my kids were little, (my youngest is now thirteen), I used to look at them and wonder if I would be around to watch them grow up. It scared me to think that this disease could suddenly attack and take me out. It still can. But no amount of worrying will gain me more time in the end. I don’t want to reach the end of my life and have regrets of not embracing every moment.
