I'm sitting in my bedroom fighting a pseudoexacerabation of symptoms brought on by a 31 degree humidex. The house needs to be cleaned, clothes need to be washed but it will have to wait until I can cool down and wake up out of the fatigue while hoping the swelling in my hands and legs goes down. It's only noon so the daily workout I've come to enjoy will have to wait too. Waiting is what I do best it seems.
So, I've taken over a year off from writing to dive into work and family but I'm back now and have a lot of updating to do. I know that some of you are reading the above and saying to yourselves, "symptoms of what?". Well, here's the big reveal:
I have been diagnosed with Multiple Sclerosis. The big MS.
There, I said it and now it's real. There's only a few who know because I haven't started treatment yet and not even sure to what extent that I have it. All I know is that Dawson has his fingers in my corpus callosum and there are nine visible T2 lesions that the doctors can see. It seems my braces are hiding other parts of my brain from the MRI that need to be investigated. Yes, I am 33 years old and have orthodontic braces ... I laugh at me too, it's okay. So, once I have an EMG (nerve conduction study) and a possibly lumbar puncture, I'll know more but until then I will go untreated and sort of in the dark except to know that it's there and it's real. We just need to investigate the extent.
I've learned a lot by making my family doctor and, with her frequent calls to him at my prodding, my neurologist batshit crazy. I now know that photosensitivity really is a symptom and that the reason for my vampire lifestyle isn't all in my head. For a long time I thought the fatigue I felt in the summer, the sensitivity to the heat was something we all felt but no, it's not. Turns out that my exhaustion and how easily I fatigue in the heat wasn't all in my head either but a symptom of MS that over 80% of people with the disease suffer from. I've learned that my hands are probably not going to recover and that my grip and dexterity are most likely gone forever, that my limp may or may not worsen. I found out that the pains I started having eleven years ago during my pregnancy with my oldest weren't gall bladder pains (it's since been removed but the pains haven't disappeared), it wasn't severe acid reflux or an ulcer or a delusion. The pains weren't all in my head like they suggested years ago because they couldn't find the cause, they are what's called an "MS hug" and actually quite common in patients with MS when intercostal muscles (the tiny ones between the ribs) spasm making it feel like I'm being impaled by a hot poker and hugged by a grizzly bear at the same time. The swelling extremities, discomfort, occasional blurring vision and sometimes slurred speech are all normal and I'm not crazy but instead quite a textbook case so far.
I started complaining of these some of these symptoms during my first pregnancy and now, eleven years later, I've found a doctor who finally listened and sent me to the right people for the right tests. It feels good to know that someone finally believed me and helped me get the answer. I almost lost my job when begging for understanding that my hands just didn't work properly and then I finally landed off on a short-term disability and then almost lost it again when someone started a rumour that I was faking the whole thing because I was ashamed that I couldn't emotionally handle the job. It is very real and, even though the diagnosis is life changing, it feels good to know that someone finally believed me enough to help me find out what this is.
Am I scared? Absolutely fucking terrified. I watched my mother deteriorate and eventually lose her battle with this disease after 30 years of fighting it. I am a single mother with three kids who are with me 99% of the time so I worry about what will happen if I do deteriorate or if I start needing aids like a cane, walker or wheelchair. Those are bridges to be crossed at a later time though, right now it's all about extent of the disease, watching any progression and getting a treatment program in place. One thing at a time. Get healthy (I've quit smoking; started exercise and watching my nutrition), get educated (MS Society and my uncanny research abilities are doing me well) and get treatment (in the process of getting that figured out).
One thing that I ask is that anyone please not say this to me: "But you don't look sick". Trust me, there are more challenges every single day that I will ever admit to anyone outside of my doctors. I am sick and it is literally all in my head, I'll show you the pictures sometime. So, this blog is probably going to move from the random rants and observations to my experience travelling life with a serious neurological disease. I was told to document all of my feelings, symptoms, possible symptoms, changes, observations and so on. I guess that this would be a good forum for it. Maybe?
