Chronically Something

thegoaloflivingistogrow:

Being chronically sick makes the whole “should I go to bed early tonight or go out and be social?” decision so much more complicated

Because what the question really is for me, is “should I possibly feel better in the morning, or risk feeling worse for days?”

And people (usually) just don’t get that.

4 April 2012 ·

• Tags
• chronic illness
• social
• decisions
• how we have to think
• multiple sclerosis

Soliciting your thoughts! Med Advice?

So first off thanks everyone for the support after the previous post. I might not be mary sunshine but I’m getting back to the “kicking ass and taking names till I pass out” version of me and I like her better most days so I’m going with it. 

But, in all of my crazy I’ve avoided the big medication decision. Copaxone isn’t really keeping the progression at bay so my doctor wants me to think about other meds. Had a month to think but kinda ignored it cause its scary and here I am a day and half before my near appointment and no closer to a decision. 

I’ve done lots of reading and research but none of it is really all that helpful. If anything its scary. So I thought maybe I’d see what you all think about your meds, if you have any anecdotal evidence, thoughts, complaints, anything that might help me make a decision. 

So! My doc discussed the following options with:  

Avonex: Self injected chemo (w/ immediate debilitating side effects) & all that comes w/ Chemo. was on this before (rebif aka my personal hell) but this wld be 1x a week instead of 3 (my reactions to rebif were so bad I just quit taking it after not being able to move for most of the week while on it and ending up in the ER with low BP and The damn drug made me feel like my life had ended). 

Gilenya: a pill (no injections YAH!!) but causes extremely low BP (which I have already) & lower heart rate (which I could use a good reduction in since I’m borderline tachycardic) also w/ Back pain, diarrhea, headache, hair loss, weakness, & increased likelihood of liver damage & cancer (not so good when I’m a smoker, and have a history of cancer in my fam). Also some mentions of weight gain which I’m really not interested but realize is the least of the issues here. 

or

Tysabri: a monthly transfusion that has a risk of fatal brain infection. Would obviously get tested for the JFC virus before deciding but thats some hard core scary stuff there regardless. And seeing as I’m sorta known as the bad luck girl by most friends and family its maybe not worth the risk? then again hearing about people feeling great after their infusions sounds amazing and having to deal with it only once a month is also pretty great.. 

I just don’t know. I am reading and reading and can’t decide. I could stay on Copaxone but its clearly not doing the trick since I keep having new symptoms all the time..  

So i’m wondering if any of you might have experience to share? 

anyone?! Thoughts? Bueller? 

10 October 2011 ·

• Tags
• Multiple Sclerosis
• Decisions
• mediation
• Tysabri
• Copaxone
• Avonex
• Rebif
• Gilenya
• Low Blood pressure
• How do you decide?
• Choices
• Neurologist
• Any thoughts would be so helpful!

Can you truly love someone who’s sick?

afflictionseclipsed:

As hard as it can be to love someone- it has to be harder to love a sick person. I feel like every movie I have seen latley just highlights how tough it is to care for someone who has medical trouble

I see that enough. I can honestly say one of the worst parts about having MS is seeig how it effects my loved ones. I know it’s not my fault, and that it’s something I have no control over, but it still kills me that I’m hurting them, or that I worry them.

Iv always wanted my own family that I could love and care for to no end, but would I really be doing the right thing? Or is that a selfish dream? How can I give 100% if I don’t feel 100%? And what if my MS progresses and i get worse? If I lose my mobility, or even my ability to take care of myself? Then I’m just being a burden on my family. You can’t hurt your loved ones if you don’t have any.

On my mind a whole lot lately.

13 April 2011 ·

• Tags
• Multiple Sclerosis
• Coping
• Chronic Illness
• Future
• Decisions
• Catch 22