Thursday, January 22, 2009

Yet another visit....

To the doctor delayed. Halfway to the neurosurgeon's office this morning around 9, his nurse called and said they needed to delay the appointment because my doc got called into an emergency surgery this morning. Doing what he does - that could not have been a good thing and I sent a little prayer up to whomever he had to open up. They said they could fit me in around 1230. Around 1130 the nurse called again saying that he was actually still in surgery and they were having to re-arrange the afternoon appointments now and could I re-schedule. Sure but I still need to get to see him next week....

Sooooo, not only do I have my horrible vision field text next Thursday afternoon ... If you haven't been through one or had the pleasure of experiencing a bout of optic neuritis... UGGGGHHHHH!!! I get to visit the neurosurgeon in the morning and the ophthalmologist in the afternoon. Let me tell you just now excited I am!!! Can't you picture me dancing for joy? My whole 80s sway back and forth - being that's about the most jiggy I can get with it right now!!

Do all chronic diagnosises require that many doctor's appointments? One of the only reasons I own a PDA capable phone (besides to get rid of carrying both a cell phone and PDA) is to keep track of all the dang appointments. My neuro (logist -not surgeon) likes to schedule appointments several months in advance, as well as the MRI's a couple of weeks before that... My partner's chron's doesn't require that much - she's got one of those meds that does require liver functioning testing (all of the current/former interferon users know about this and I used to be one!) every 3 months but doesn't really have to see her doc unless a flare gets out of control. A friend of mine with RA only calls her doc if she's got a flare she can't get under control. She went about 2 months ago and that was the first time she's seen him in about 3 years!

Are we as MSers wusses? I don't think so but I think we're viewed as "frail". That might not be a bad thing and I don't know a lot about some of our fellow immune-related illness sufferers like lupus and (I'm having a blonde moment right now and cannot for the life of me think of some others and don't feel like taking a ride on the Google train) others... but do they have to see their docs as much? I can't imagine having to do it without my insurance and I'm sure I would decide when/if my symptoms/issues were worth the $300 co-pay.

Now, my NP in my neuro's office pegged me pretty early on as being not totally trust-worthy in relaying any issues/symptoms I have. I got yelled at last August when I just happened to have that appointment when I lost use of my right leg.... That's when she reminded me she wanted me on the 3 month plan for a little longer. I haven't been back since then but that's because of Ike and a little back surgery. I do need to make that appointment with them - I really like'em and I have to get back to the office by July as that's when my Copaxone needs renewal!

Getting back to that "frail" idea though.... I think we get viewed that way by the people we disclose our dx to as well.... I didn't know crap about MS before my dx... even with a prior brush with it being mentioned after a lesion-viewed MRI 5 years prior to my Dx. Luckily I didn't even think about being a weaker person until I started reading about it. Hell, one of the first things out of my NP's mouth to me and my sister in law (who was at the appointment with me - being blind makes it hard to drive!) was that I was not their only cop they were treating with MS, and they even had a few fire fighters... Talk about playing with fire!!! Can you imagine?? My best friend's a fire-woman and I've put on her gear - in her air-conditioned condo and I was sweating buckets!!!!

Getting over that "when's the next freakin' time I'm going to lose function of a limb or eye" is my biggest weakness with MS. I'm battling real physical weakness as a result of my back surgery but that is something I know exactly how to overcome. I've developed some short-cuts in my routine that help me conserve my spoons! I know when I can and can't push myself. When I'm in "frail" mode is usually when I'm actually more likely to push myself to far - isn't that natural??!?! Screw it - I can do (fill in the blank)!

SIGH! Enough of that - Bones is about to start and I can't wait!!!!!!!!!!!!! : ]

No comments: