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| Look I'm "normal"! |
I had a really busy day today. I got one of my finals out of the way today... I have two more to go. I went to my cousins graduation tonight. I'm in my way home right now and I'm freaking exhausted. I didn't have my meds with me so I had to duck out early to head home and get me meds.
I'm kinda transitioning to this whole urinary issue. I had a drink during the graduation...but I didn't drink as lug a I normally would because I didn't want to have to get up any to the restroom in the middle of the graduation. ( I was sitting in the middle of the row.)
I didn't take the boys with me because I knew they wouldn't want to sit there and listen to people talk the whole time. My feet are killing me though, from all of the walking around downtown. I'm in a somewhat better mood today, minus the pain. It toon me an extra 15 minutes to get out of bed this morning... Than it usually does.
Im coming to the realization that everything happens for a reason and God would never hand me a challenge unless he knew I would overcome it. I'm trying to keep a positive attitude through everything but everyone needs that time to be pissed off when things don't go the way you want them to. Just because I seem negative here and there it's not my long term attitude towards the situation... If that makes sense.
Everyone keeps telling me that I need to write a book... And since I've hear it more than once from more than one person... I keep taking it into deep consideration. I get so excited and a sense of joy when I read that my writing helps others. Even when I'm pissed off and throwing a fit about something... It's like someone else can relate and thanks me for saying it like it is.
So I'm assuming once I talk to my doctor, he is going to suggest that I change medication to slow progression and I keep going back and forth on my plan but I'm thinking more and more that instead of switching to Copaxone... I'de to go to Betaseron. I really thought that the whole diagnosis process was a hard time for me... but being used to MS & the symptoms it brings and not knowing I was getting new lesions when I was... it's like that same stress in a different manner. It's like, you already know a lot more about MS... but it still seems to come and stab you in the back. I thought my MS and me were good buddies there for while, until I got the knife in my back.
So what are y'alls thoughts on this... what med should I switch to from Avonex... should I write a book? If I did take the time to actually write a book, would you read it? I guess it's just hard for me to wrap my head around the fact that my vents/blogging are actually words that help others... that others can relate to. I mean, I know I'm not alone in this battle... but I know that MS is different for each and every one of us... so to know that others are still experiencing the exact same things as me... is odd to hear at times.
I wouldn't mind going to a shot that is more frequent AS LONG AS IT'S DOING WHAT IT'S SUPPOSED TO! I'm also going to get a "proof" of diagnosis from my neuro and send it in to the MSAA & see if I qualify for that 4 wheel/seat walker. Oh! I'm gonna go get a cane tomorrow... just a light-weight folding black one... and then I'm gonna go to the arts & crafts store and get some pink camo design and pimp out the cane. I can't find a pink camo cane to save my life... and I have a slight obsession w/ pink camp. I even have a shot gun that is pink camo.
Anyways, my brain is done for the night... I'm gonna go to bed. Comment on my blog & let me know what you think to the questions I asked. I really like to hear the feedback. It also encourages me to keep posting, like what I'm doing is actually worth it.
xoxo
Ashley
Tattoo by Jordin Sparx << Another Multiple Sclerosis Remix that I love.
i just can't get over how similar we are. second time i am telling you this. even the things you say. coming to the realization that GOd wouldn't hand you this...and you know what else eventually it will glorifyHim. i was on avonex oh how awful. so now i am switching to tysabri because mine is also very agressive. pretty nervous about it but really want to feel better. neuro said if he had to choose one he would take tysabri so there is my stand. i hope you get a good rest and fill your mind with more "blogs" i look forward to a new note everyday
ReplyDeletekate
Thank you for responding. I really appreciate hearing from others that are going through what I'm going through. Are you seeing a specialist? Not only am I impatient about hearing from my neuro but I'm also impatient about getting to see the urologist. I'm 24 years old... I shouldn't have to deal with the things I'm dealing with. My husband is really upset at the fact that I'm going through all of this and he is trying his best to do everything possible to help me. I'm lucky to have the support system that I do. I know a lot of people on Tysabri... I just don't like change... I felt like I had everything finally leveled out when it came to my medications, then I got this "slap in the face". I will post later this evening... I have to go to a baby shower today, we had a cold front hit over night so I'm really hurting today. James, my husband, is going to get me a cane soon and decorate it for me. It's like a project for him lol men. Anyways, thank you for commenting... the response I get is what drives me to keep posting.
ReplyDeletexoxoxo
Ashley
I have been on Rebif for about 9 months now.No serious side effects from it. I still get the flu like symptoms though. It seems that I am just not adjusting to that part of it, but a lot of people do after a few months. My last MRI showed signs of improvement. No new lsions, and the exsisting ones have shrunk a little. My doctor is considering switching me to the oral meds soon, only because the Rebif still makes me sick, and I struggle a lot with injections. (I have a needle phobia) I'm not sure about it though. As much as I'd like to swallow a pill, it still so new.
ReplyDeleteI like reading your blog. I'm new to it, but it is nice to hear other people's experiences. It helps to know other people feel the same way. Makes you feel less crazy. :) If you wrote a book I would read it.
I would most definitely read a book if you wrote it! You are one of the strongest people I know, and I don't know how you do it sometimes! Tysabri might be a choice but talk to your doc first. You know my story about all the CRAB's, so I won't try to explain again. I love you, my friend, and that will never change!
ReplyDeleteBecky
I have frontal lobe lesions and brainstem lesions...so I am a biatch too-haha and have had personality changes. I also have short term memory issues sometimes I cannot remember things very easily at all!!! I have to write ALOT of things down. I had a nurse at the doctor's office get mad at me because I couldn't remember having a freaking call from 6 weeks prior...I also find that I am impulsive sometimes...not a good thing often stick my foot in my mouth or make bad decisions. Brainstem lesions cause me migraines, hand tremors, dizziness, Llhermite's(sp?) syndrome, and nausea and severe fatigue. So good to hear that you are not alone in your suffering and frustration...I have a MRI on wednesday, I too have been on avenox and am worried to see what the neuro says. Fortunately, I have the mri in the same building and same day see him and he reads it. So we shall see:) Thanks for letting us be a part of your life. I have been thinking about blogging, but am a little aprehensive.
ReplyDelete<3 Julie
Julie, Thank you for letting me know i'm not alone. I have lesions on my brain stem... so it's nice to know that I'm not just a hypochondriac. I'm sorry that we have these things in common, though it sucks that we have to deal with it in the first place. I'm calling the neuro in less than 15 minutes... and then I'll give an update on everything. Thank you for reading and commenting on my blog. It's nice to hear the feedback & really interact with those that can actually understand what I'm going through. "You don't get it, till you get it." << Montel
ReplyDeleteAnyways, I'll update soon
xoxo
Ashley