Friday, June 07, 2013

MS Diagnoses Anniversary

I hate this thing :p Its very common for people that have to give themselves injections to get sick and annoyed at giving themselves needles, (I know it has a name, but I can't think of it right now, brain fart :p). I don't think I would be that annoyed at having to take injections if I didn't also have a bleeding disorder, because on top of the bruising I usually get hematomas a lot. So my stomach and butt look like I have been hit with a BB gun, it can be pretty painful. I had to stop injecting on my thighs as it was too painful and the injections sites were swelling right up and bleeding a lot :/

So the 4th was my MS diagnoses anniversary. 6 years ago,time flies.

Have things changed? yeah, I can't walk a long distance, but being able to walk even a bit is better than having to use a chair. I do have a hard time remembering things, so cognitive issues are a problem. I am blind as a bat without my glasses on :p My hands and feet go numb more, and the meds to take to help, make me a zombie, so I just deal with it. Still can't handle heat, I become immobile and have an even harder time talking. A new symptom, shocks on my face, thats fun :/

I could go on about symptoms, but don't really want to bore people. Would those symptoms be worse if I had not have been taking Rebif for 6 years? No one really knows, but I am not going to stop taking it, just in case that is the reason I am not any worse.

I am much more likely now to stand up for myself when people give me grief over not looking ill, and I still get attitude over parking in a disabled bay (I do have a blue badge). Most of the time, it is the people who do not have a badge that give me attitude (shakes head). I get dirty looks from people when I don't move from the disabled spots if an older person or someone with a pram gets on the bus, I use to be embarrassed over that. I have stopped caring because I have realized that those spots are there for people like me, the ones that need to be at the front as walking to the back causes them to fall. I still don't asks for help when I should, but I am getting better at that :p

I still get nasty looks from people, and the whispers behind my back when they think I am drunk. Give me a drink, I will walk straighter :p


Ann said...

You are awesome. And I am loving the left-handed drawings :-)

Screaming Feline said...

I am always so glad to see those with MS not roll over and let it completely kick their ass. I use to help at a MS group and some of the people who would come because they had a child or spouse who has MS but just laid in bed and called it quits would break my heart. They came there hoping to find a way to get their loved one going again and seeing those there that had it, but still carried on the best they could like nothing was wrong, gave them hope.
You are amazing Jen, and don't let any dirty looks or back talk let you think any different.

Rose Welty said...

You are an inspiration Jen. People are lame, but that is their problem and not yours. Thanks for sharing your life, I'm glad to know more about MS so I can understand better.

Jennifer Rose Phillip said...

thanks ann :)

Jennifer Rose Phillip said...

i really dont understand people that just give up, giving up makes it worse. its great that you use to help out in the group :) i wish more people did volunteer work for charity groups

Jennifer Rose Phillip said...

thanks rose :) and yes people are lame, but half the problem is they dont know much if anything about MS :/

2paw said...

I want to say well done, because in spite of your medical ups and downs you somehow always manage to make beautiful art- even with your left hand!! If you look well people pooh-pooh you, and if you don't look well, then you should: it's a vicious circle. Hope you are having a good day today!!!

Jennifer Rose Phillip said...

today was... a so-so day lol
yeah, you can ever win, either too healthy looking or too sick looking :/