It’s been a few months since I’ve written an entry on here. Why? Lack of motivation, perhaps. Feeling lethargic and depressed might have been in play too.
What’s new? Basically the same song and dance. I am still undergoing IVIG treatments. I had a 3 month check up with my neurologist in April who did a strength test on me, and my results were that I was regressing a bit. As to if these treatments have been beneficial, it’s still too soon to tell. I have another assessment in the beginning of July which will consist of another strength test – and this time a
lovely EMG test will accompany it. Blech.
My pain levels have been steadily crappy. I still lose quite a bit of sleep because of it. I have yet to be admitted to a pain clinic (I will write a separate entry about this shortly), so that sucks greatly.
June 10th marked 1 year since I had my wisdom tooth taken out (you know, the one that triggered my auto-immune disorder, chronic pain and 2 month hospital stay). It was a surreal day. Last year, in 2013, after the tooth extraction, I had went to Starsky’s (a grocery store) with my mother, had to use the restroom, and took a selfie in the mirror showcasing the beginning of facial swelling. On June 10th this year, I went to the same store and used the same restroom and took another selfie. It wasn’t intentional. I just became aware of the coincidence as I was washing my hands and looking in the mirror.
Left: June 10th 2013 in Starsky’s bathroom with a swollen cheek. Right: June 10th 2014 again in Starsky’s bathroom recreating the swollen cheek selfie.
I’ve still been falling. Mostly in my bedroom. I don’t know why my knees keep collapsing but it’s very discouraging to my progress. I lose confidence in myself and my ability to walk. I don’t want to be stuck in my wheelchair forever, but this whole ‘mobility’ thing seems to escape me at the moment.
Summer weather has finally arrived. It feels almost sinful to remain inside wasting away. But alas, that’s my life. I watch people on facebook post their photos of their summer adventures, time with friends and just having fun, and I am extremely jealous. If I end up leaving my house to accompany my family grocery shopping, or even to a doctor’s appointment, I make sure to get some photos taken of me to post to prove to myself – and others – that, “hey, look at me! I have a life too!”. But it’s a piss poor charade that no one, except myself, cares about.
I’m going to end this entry now because the overall tone is extremely depressing and I don’t want to continue in that vein. Thanks for reading.