- Posted June 12, 2014 by
This iReport is part of an assignment:
Living with a chronic illness
Life time of illness; what is a girl to do?
I have been sick since I was a child...I got tired more easily than others and needed more rest. In my family you didn't complain or say "you can't" ... I kept on keeping on for years...I got married in 2010 and we wanted to have children...I suffered over 5 miscarriages (all early) and was then diagnosed with an autoimmune disease; Hashimoto's Disease (autoimmune thyroid disease). They gave me the medicine for that and it didn't work. Turns out doctors don't run all the lab work you need to figure out if your thyroid is working right...go figure... I found a functional medicine doctor who helped me and educated me so I could help others...it still didn't help me and on and on we went. With no answers I went on until I collapsed at work on December 18, 2012. They said I had an enlarged Thymus and sent me home and to a cardiologist who said this collapsing at work had nothing to do with my thymus...who even knew what a thymus was anyway??? So my doctor sent me to an oncologist who said...Do NOT pass go or collect 200 bucks...off to the ER for you missy...he said I didn't need to be there unless that mass in my chest was caner but it needed to come out...he thought twice about the ER and then he sent me over to a thoracic surgeon the next day and that doc said from the CT scan the mass wasn't pushing on anything but I was sick sick sick and he thought it might be related to an autoimmune disease related to enlarged thymuses; Myasthenia Gravis...off to the ER we went and I was admitted and stayed there for five days. They did diagnose me with Myasthenia Gravis and sent me home and to another hospital for testing. I didn't get better on the meds they gave me...they were supposed to help my nerves talk to each other...since that is what Myasthenia Gravis does...it makes your nerves not be able to talk due to blocking the signals in the synapses...Finally my neurologist sent me to Georgetown University Hospital and I had to get nasty to make them admit me...I was on their Neurology Unit for six days...I survived lots of test...(the worst was a spinal tap that lasted an hour and 20 minutes as she poked me so many times doctors were not even able to blood patch her mistakes...I had spinal cord fluid leaking into my skin and it created a reservoir above my tail bone...that resulted in a spinal headache that lasted 2 months...to stop the headache the only thing you can do is lay down and drink caffeine...NICE...it took 2 months before I could get up on my own without almost passing out)...anyway, I was released by a neurologist that said I had "somatoform disorder" aka "this can't walk or breathe thing is in your head" ... BUT ... 2 days later their surgeon took me back to the hospital and removed the mass in my chest...my enlarged thymus was really True Thymic Hyperplasia and it is very rare...the mass was much bigger than the CT scan showed. It had grown from my diaphragm up under my collarbones...up into my neck and an accessory lobe had invaded and encased the inanimate vein in my heart. I wasn't getting enough blood into my body...thus...couldn't walk and or breathe...I was at that time a walking miracle...I could breathe and walk as soon as I awake from surgery. It took months to rehab from the month of bedrest and the horrible spinal tap but in May of 2013 I went back to work. A new job that was more physically demanding. My immune system didn't recover. I finally got to the point where I was having exhaustion problems and cognitive issues. I was at that time diagnosed with Lyme Disease. I was on four antibiotics at a time for months on end. I was in horrible pain most of the time...in every joint and I suffered from this incessant burning...I was in such pain from treating the Lyme Disease that I cried silent tears for days and even had to miss my own baptism. When I lost my job due to Lyme Disease, we moved south to save money. It is much cheaper to live in Southern Virginia than DC. After moving, I began to lose track or time and I would forget where I was going. I fell all the time and had to have constant supervision. I fell down the stairs more than one time but the last time, I broke my 5th Metatarsal in spiral fracture and it didn't heal... I had surgery on April 9th and just recently had the pins out so I could walk on it.. I was still under Lyme Treatment and getting MUCH worse until I had to stop Lyme Treatment because of all of my symptoms...it was not possible to have pins in my foot and be on crutches for 2 months if I was going to fall and hurt myself worse...my husband and I made a choice to live with the pain of Lyme...stress causes all those old symptoms to return...I can manage myself with no stress and meds to manage the pain of this horrible existence...I am to a place where I can enjoy life again...it has only been a few days since I had the pins out but not having to manage that pain has helped a lot...I know I still have Lyme Disease and will look at getting treated again in the future. For now, due to the lack of research with long term antibiotics and difficulty I had with treatment I will hold the line until I learn more. There is another doctor I want to see. I am seeing mainstream doctors too...I am afraid they are going to diagnose me with Multiple Sclerosis since I still have memory issues and I have all this pain...I have been diagnosed with Cytomegalovirus,HHV-6 Virus and Fibromyalgia as well...they don't know what causes it...sigh..and as we all know...autoimmune diseases travel in packs...lets hope they only dropped one at my door...we shall see...I am tired of this chronic illness and I don't like it...I think it likes me tho...I realize that I have to be a different person than I was yesterday...I am thankful for every good day...and know that REST is the key...I am 35 years old...this isn't fair but it is what I have...