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Status update and some reflection

June 16, 2011

Well, I’m still not entirely done that history I promised early. I keep remembering something to add to the list while I’m busy doing something else and by the time I get to the computer, I completely forget what it was I was going to add (though that did remind me to add short term memory problems to the list…) I’m trying to be as concise as possible with this list but I am trying avoid any technical terms (ex: I will not be listing l’hermitte’s sign, but I will include a description of it) because I do not want to give the new doctor the impression that I have consulted dr. google before seeing her (that kinda irks a lot of doctors and it can make it seem like you just copied a list of symptoms off a site and are now convincing yourself that you have something you don’t). I’m also trying to make sure that I think really hard about the past 8 years and remember everything. I brushed off a lot of things for a long time so some of it may have escaped my memory. Writing it all out though is startling. I knew there were a lot of problems, but seeing it all itemized in a list like that…wow.

Now then, in regards to the fact that it has taken me 8 years to come anywhere near a diagnosis: if you are in diagnostic limboland too, do not panic. It may take you a very long time to get a diagnosis, you may never get one, or you may get one right away. The reason why it has taken me so long to get this far is not the fault of the doctors, it is entirely my own doing. I am an exceptionally stubborn person and I abhor admitting that I need help. I have no problems admitting when I don’t understand something, but I do not like to admit when I cannot fix my own problems. This is what has stopped me from being diagnosed and treated sooner. While the neurologist I saw when my symptoms first started didn’t do a proper job, I should have gone back or gotten a second opinion when the problem came back. This was just a bad mix of denial (“well it went away so I’ll be fine, maybe it wont come back again”), stubbornness, foolish pride, and not putting enough value on my own health.

Looking back over my entire life, I can only recall 6 visits to the emergency room. For 2 of those visits, I only went because my GP ordered me to go. For one of those visits, I was a baby. 1 visit was for a very nasty injury after leaving it linger for several hours until I could not walk (a dislocated knee with several completely torn ligaments), and for the other 2, I went because I thought if I did not go I might die (excrutiating pain from what turned out to be kidney stones, and heart attack-like symptoms that I now believe was caused by an MS hug). I’ve said it before and I’ll say it again: I do not like being a patient. I don’t have white coat syndrome (fear of doctors), I’m not afraid of hospitals, I watch in fascination anytime I have to have blood drawn or an IV put in, I just don’t like admitting that I can’t manage my own health. If you are like this too and you’re trying to cope with something on your own, suck it up and get some help. It’s not worth it, you’re just suffering for no reason. There is no shame in getting help. This latest relapse has really forced me to accept that. I think that was the real root of the depression I went through (though the loss of function didn’t help) but I’m glad I did it anyway.

Now that the lecture is over, onto today’s symptoms. It is very hot and humid here again today unfortunately, so I’ve been trying to just turn my house into a cave and hide out until the sun goes down. I’ve had a wicked headache all day long that ibuprofen will not touch, my energy level isn’t the greatest, and I have that vibrating skin sensation in my fingertips, feet, and parts of my face, and the occasional twitching in my thighs. Ahhh and as I’m writing this now I just started getting that stupid banding sensation again, like a wide rubber band, but this time it is around my forehead. So weird…I’m thinking about cutting my hair off again because of the headaches. I really don’t want to because it was short for a long time and I kind of miss long hair, but keeping my hair up when I have these headaches makes it worse, but keeping my hair down just makes me feel too warm (which makes everything else worse). I’m not really all that sore today but my muscles feel weak.

I ended up staying up late last night talking to a friend and I noticed that I started feeling really achy and my legs started to twitch when I was getting too tired. The numbness I had in my left hand got worse and my hand just got really clumbsy so it was hard to type. I also had tingling in the right side of my head. This has happened a few times so I think it’s safe to add sleep deprivation to the list of triggers.

I think I might cave and put the air conditioner in my bedroom tomorrow. It’s just too hot, no amount of fans are cutting it. It’s not too bad at night, but still really humid so it sucks to keep the windows open. I’m feeling really exhausted so I think I’m just going to go snuggle with a hot water bottle full of ice cubes and get some sleep already (even though it’s still light outside).

Oh! The eye! It’s still not gone. The stye is not as hard but it’s still there, it doesn’t hurt as much unless I close my eye really hard. Bottom lid is still really puffy, it looks like a black eye that has started to heal over. Really hoping I don’t have to see the doctor about it and go on oral antibiotics.

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