THE FIRST INCISION Story written by Retha, a young woman suffering from MG. View Rethas blog at chronically20something.wordpress/ The first sentence of my first blog post has been written. No pressure, right? Wrong. Here we go anyway. WELCOME! And I am sorry. The fact of the matter is that if you stumbled upon this blog you are most likely affected by chronic illness. A horrible thing to have as part of your life, whether it be personally or via a friend of a friend’s godchild’s friend from church. The fact that you are actually reading this post and not just looking for inspirational quote pictures should be commended. It takes a special type of person to endure the omnipresent battle of chronic illness, and clearly you are trying. My medical story is as follows; I am a 21-year-old female diagnosed with Myasthenia Gravis and Fibromyalgia. I have had a thymectomy via full sternotomy d1401702187607ue to an enlarged thymus gland (that means I have a 15cm scar through my cleavage), a muscle biopsy of my right deltoid as well as a plate insertion on my left radius. (The latter has absolutely nothing to do with my chronic illness, I was young and foolish, but it’s quite a large scar, so I felt it deserved to be mentioned at least once.) My symptoms include, but are not limited to, severe fatigue, nerve, muscle and joint pain and severe muscle weakness which leads to difficulty breathing, using my limbs, seeing, swallowing and chewing. I require frequent hospitalisations to receive intravenous immunoglobulin or more commonly referred to as IVIG. This means a hospital stay of 2 – 4 days. Myasthenia Gravis (MG) is a neuromuscular autoimmune disease. This basically means that my immune system attacks the receptors that are meant to convey messages from your nerves to your muscles. This leaves me in the awkward position of frequent falls, droopy eyes, shortness of breath, some drooling and an immense hate of stairs. I also sleep a lot, and I mean A LOT. It’s quite a rare disease, unlike Fibromyalgia, so I thought I’d include a brief explanation to raise some awareness in the process and perhaps lessen the amount of “Mya-what-what?” reactions I get. As most people with a rare disease are aware, this happens everywhere, even in the ER. Patients who suffer from MG are often referred to as snowflakes, seeing as the way the disease manifests itself is quite unique to each person. That’s why I might be referring to myself as a snowflake later on in a few rants. My personal story goes as follows. Before falling ill I used to be a lover of all things active, especially running and field hockey. I even had the somewhat wild ambition of one day perhaps representing my country on the sports field. I loved the rush of running, scoring and sweating. It made me happier than I thought anything else could. During my last hockey season in 2012, the year I turned 19, I started feeling a shortness of breath and what I like to describe as “a lack of oomf.” I spent my days working at a school for children with disabilities and my nights playing and coaching hockey. The inbetweens were filled with copious amounts of sleeping as well as some light socialising. My symptoms worsened to such an extent that I was unable to walk to class or make up my own bed. After a wrongful diagnosis of exercise induced asthma and a few specialists claiming it’s all in my head or I was merely depressed, I was diagnosed with MG and Fibro more than a year later in September 2013. That was the end of my first year at varsity and just before my twentieth birthday. What a way to start your second decade on Earth, right? At least I knew I wasn’t mentally unstable too. Positive as can be. Unfortunately, my frustrations were far from over just because I finally had a diagnosis. The year 2014 had a much different idea of how things would be working out than I had. My medications were just starting to take effect when I experienced my first proper flare. I became so weak that I needed permanent care and was forced to drop out of university and move back home with my mother by April. The move in address forced me to move neurologists as well. A blessing in disguise. My new neurologist was proactive, involved and dead set on treating me more aggressively which lead to the much better quality of life that I am graced with today. By May, she had administered my first IVIG infusion and scheduled my thymectomy with one of the top cardiothoracic surgeons available. By July I was driving on my own again (now that’s post open heart surgery, remember.) Since then I have had another flare which meant an elongated hospital visit and some emotional trauma from the complete inability to breathe. But I am here. I am alive. I am breathing again. Currently, I am in hospital for my third IVIG treatment of the year. I have one scheduled for every six weeks now, providing my medical insurance pays. If you aren’t aware, it is quite the pricey medicine. The throbbing IV in my arm and the annoying beeping sound of my drip can’t contain my excitement about starting this blog though. I found that being in your twenties and chronically ill can be quite frustrating, seeing as most things your peers take for granted, brings you ceaseless amounts of joy. This is my attempt at helping other “chronically twenty somethings” feel a little less alienated. A little less old. A little more human. - Retha
Posted on: Wed, 29 Oct 2014 15:09:11 +0000
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