Auto immune disease is one of the most misunderstood maladies affecting people today. It can change your life at any time with the overall effect of having it change who you are. One of the most difficult problems with having one of these diseases is that employers don't want to know anything about it. Our lives depend on how well the medications work to keep us on an even keel. When things change due to the increase or decrease of the effectiveness of your medications, you can end up losing your job due to the ignorance or lack of desire on the part of the supervisor and those higher up on the "food" chain, to understand what is going on with your health.
I started out with Hashimotos Thyroiditis, an autoimmune disease that causes antibodies to attack the immune system. In my case, the antibodies had already "burned out" the left portion of my thyroid. As time went on I developed tumors on the right portion of the thyroid. Due to the tumor being wrapped around my vocal chord, my voice began to become very husky. Surgery was scheduled to remove the tumors, which had grown to 8mm in size. What should have been a short surgery became a 3 1/2 hour procedure as they had to peel the tumor off my vocal chords. It was a very delicate procedure but I was lucky enough to have had an anesthesiologist who had just finished a conference at Yale Hospital where he learned how to test the vocal chords by using a tuning fork. My voice is fine. Did this cure my thyroid disease? No. There is no cure for any autoimmune disease. Having one autoimmune disease leaves you open for contracting another.
Is autoimmune disease "catchy"? No. In my case, it is genetic. Unbeknown to me and my siblings was the fact that my mom had thyroid disease. Her doctor never told her to get us checked so, we never knew that there were other family members on her side of the family with thyroid problems. As my thyroid is gone, I have to take Levothyroxin every day. This little pill IS, technically, my thyroid. I live everyday with memory problems, stuttering, depression, "foggy brain syndrome" (cannot do basic things like change TV channels, comprehend things...you will get the "deer in the headlights" look from me when you ask me something.) and a host of other symptoms that I won't bother to list here. If you have thyroid disease and have children, nieces and nephews, they should be checked as soon as possible. I alerted my family, and extended family, and my older sister was found to have thyroid issues as well.
My latest malady is called Essential Myoclonus. It is an epilepsy-related disease that causes uncontrollable jerking of my extremities and body. Today, the jerking has been awful. The medical community does not know a lot about this disease. They are pretty sure that is caused by some sort of damage to the spinal chord. This makes sense to me as I had a herniated disk that burst toward the spinal chord. Could this be the cause? There are no tests other than an MRI to inspect the chord. My disk issue is related to an automobile accident in 2008. The first signs of this problem occurred in Sept. 2011. As a result of the accident, it was found that I have spinal stenosis as well. This is a deterioration of the disks in the spine.
I am lucky that I have a doctor who will take time to listen to me and do the necessary blood tests to combat the thyroid issues. Once diagnosed, anyone who has Thyroiditis should be checked every 6 months so necessary changes to the the meds you are taking can be made. Be insistent with your doctor. If he does not listen to you, find a new doctor who will discuss your symptoms with you and act on your suspicions.
I am chuckling to myself as I type this because words are being evasive. I have to stop and really think to come up with the correct verbiage.
Autoimmune disease is not fun. It is painful, tiring, and depressing. Often times the symptoms for one disease are the exact same as the ones for another. In the meantime, the symptoms play havoc with your body, mind and spirit. Some people think you are faking, looking for sympathy, or just plain loony. Don't blow someone off because they are having issues that you don't or won't understand.
Going through the changes caused by the symptoms is horrible and nothing I would wish on anyone. There are days that I just don't want to do anything but curl up in a ball on the sofa. People mistake this as being lazy or unmotivated. It is depression and whether you believe that depression is real or not, I can tell you it is. When going through this I have an "i don't care about anything" attitude. On days like this, I don't even care if I eat. I have to fight very hard to pull myself out of this funk. It is very tiring.
On top of all of the autoimmune symptoms I deal with, I have to deal with the effects of disc replacement surgery due to the car accident. Because of the herniation, I had to have that disc replaced. I have constant pain in my right hip and on bad days, I can feel the disc pushing against my skin. It's a creepy feeling. I live on Aleve to care for a broken rib, the spinal stenosis, the arthritis in my hands and left knee, plus the pain in the hip.
The broken rib is from a bout of bronchitis I had in December. My bones don't knit well. Is it from the autoimmune disease? I don't know. I do know that anytime I break a bone, it takes up to 10 weeks for it to completely heal. At one point, I had to use a machine to help heal a broken bone in my hand.
So, here is what I ask from everyone who may read this, especially employers: Listen to people who are sick. Yeah, there will be those who are faking, but for those of us who are really hurting, we need all the support we can get.
