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Tuesday, May 31, 2011

walking...a lot

so ms affects everyone in different ways and sometimes the same person in different ways or at least at various times, like something that normally  bothers you could get worse during a relapse or something else could get bad during a relapse so now you have 2 problem areas. if that made sense. my big problem area that i deal with at least in some part daily is my left leg, occasionally my right but mostly just the left. it is not something that causes me pain it just affects walking in general but especially stairs. we went to DC a month or so ago and with the walking that is required there, i could not walk up to the Lincoln memorial by the time we got there. i am not telling you this to feel sorry for me so please don't. stairs really mostly bother me if there is no railing to hold on to or if i have been doing some excessive walking or even walking on uneven surfaces (the beach, shell driveway/walkway, etc). well the mall in DC has dirt pathways that suck for me to walk on and it is a long way to walk to the monuments so by the time we got to Lincoln, my legs did not want to work up stairs, so thank god someone decided to put in an elevator lol! but because of the many places that my family wants to be able to go to that require walking we need to either bring the stroller (which sucks for metros or buses) which may or may not have a child using it, i need it to help me walk because i can keep my balance better or at least hold onto so i don't fall when my leg gives out. it frequently does if i use it too much (side note, i wonder if i could ride a bike, stationary of course to help, hmm...) so on the way home from colonial Williamsburg yesterday mike mentioned talking to either my neurologist or reg dr about getting a wheelchair for times like this when i know there is a lot of walking involved. to be quite honest, no i don't really want a wheelchair even though i joke about it but i do know that for situations where there is the walking that i cannot do there needs to be another way to get to the things i want to see. now if i do end up with one i am not giving up or taking the easy way out. i am sure there is a lot more physical activities i could do to help myself but what i have tried hasn't so far. i do enjoy walking and wish i could do more of it, i used to walk everywhere in college, it was fun! now i need the stroller to walk to the mini mart down the road and i still trip on the sidewalk.
so now it is getting an appt with my main dr to see if insurance would cover it (probably would) and then getting one. in a way that makes me sad because i am more publicly admitting that i need help and, surprisingly to some people, i don't want help, i want to do it all on my own. i don't want to depend on someone to push me or carry me even though i have had to have that at times. i feel bad that i slow you down when we are going someplace whether i am hanging on to you arm for support or you are just keeping pace with me, i don't want you to have to do and it angers me that i can't keep up like i should and used to be able to.
i'm starting to think that this blog is becoming pretty cathartic for me. huh, who'd have thunk...

Friday, May 27, 2011

shots.

i hate shots. i really hate shots, and yet i have to have one weekly and that really sucks. i actually think that the more time that goes by having to have them, the more anxious of them rather than getting used to them. at least i don't have to give them to myself because there is no way in hell that would happen. that is probably the sole reason i didn't start them when i was first diagnosed, even though the dr would have forced them on me if she legally could; or at least it sure felt like it at the time. yes, it is only once a week but still, i would be more than happy to live without it. the biggest thing that sucks about it (besides it being a shot) is that it is not even a medical cure, it is just a 'therapy' to help slow down the progression. i guess it is working because i never got a call from the neurologist saying you're doomed, it is doing nothing. of course when i tried to get the results of the mri from his office the chick just said they weren't at the office i usually go to so she couldn't even look it up but the dr would call me if there were any problems. of course she never did tell me what days they are at that office... whatever. they're kind of annoying anyway a have an attitude when i call.
now yes, i complain about the shots but i do know that i am lucky that it is only once a week because there are other ones that you have to do every other day, every 3rd day or even daily. i have no idea what i would do if i had to use that 'medication/therapy/whatever'. so i guess in that regard i'm lucky, of course when it comes to shots i don't consider myself lucky. it has also completely turned my off the smell of 409 cleaner. mike uses that to clean the dining room table before giving me the shot. (you're supposed to have a clean surface before you put the shot paraphernalia down) now whenever i smell that it gives me a headache and makes me think of shots. it is almost like people who hate the smell of hospitals, or at least a scent that reminds them of hospitals. i refuse to clean with 409 now, i will find something else to use that has a different odor.
so the day after having the shot somewhat sucks too but has gotten better since my dr told me to take aleve before my shot instead of advil. i used to wake up with a borderline migraine and have to get bree ready for the bus and taylor out bed and changed. now i am just mostly tired and that is because of the sleeping pill i have to take to sleep through the side effects (flu like symptoms) of said shot. it is nice that i can take the shot during the week instead of on the weekend though; it lets me have my weekends to drink a little if i so desired, which quite often i do :) .
now for those of you who have recently been diagnosed, it really isn't that bad but i am a baby when i comes to shots of any kind and am extremely lucky my husband is willing to give them to me. i am also lucky that he is military and has the insurance to go along with it because we pay $27 for 3 month supply and insurance covers the thousands the shots cost. don't worry, if you can't afford it or don't have insurance the company that makes avonex (the shot) will help  you pay for it.
hmm... well i guess that is the end of my whining, bitch session i guess. for today and for now... ;)

Tuesday, May 24, 2011

where to start...?

well, my name is alisa and, as the title says, i have MS (otherwise known as Multiple Sclerosis) and, yes, it sucks but something that has to be lived with and is also not the end of the world.

first off, yes i know i am not using capitals; i can type faster without having to use them so get over it or go to someone else's blog, this is mine.

warning for those of you hoping for a huge incite, this first post is mostly me setting up the blog so it is not going to be long or exciting. i do hope and plan on giving you a look into my ms life and to offer some help with those of you who have or know someone who has ms. as i have learned in the 10-ish years since being diagnosed with this, there are good days and there are bad days just like with everything. i do want you to know that just because there is no known cure and there are many obstacles that can and possibly will come up at some point, there is are many sites out there that can help you or at least answer questions. this blog is one of those places so never be afraid or feel stupid for asking or commenting.