Still Exhausted

I saw my Neurologist today. It's funny how seeing her makes me feel more normal and like I'm actually doing ok. My MS is not that bad in the big picture of MS but when compared to normal people, I'm a wreck. My doc made me feel pretty good and took me out of work for another week so I can rest and recoup. I'm frustrated that I can't work but working is extremely difficult right now. I really wish there was some way that I could work from home...but I think all those "stuffing envelope" jobs are a scam.....

OH! And people have been really curious about the meds I take so here you go:
Rebif: three 44mcg injections per week (yes, I give them to myself)
Baclofen: 30mg per day (for my legs...spasticity and spasms)
Oxybutynin: 5mg twice a day (for bladder control)

I am an open book if anyone ever has questions about MS. One doctor said that the true MS experts are the suffers.

Steroids. Fun.

I got my steroids today. Luckily they were only $4. So far I feel a little more energized which is nice. The exhaustion was killing me....and so far no noticeable side effects!

Acute Relapse-UPDATE

About 30 seconds after I published the last post my nurse called. Apparently the infusions are super expensive and my doctor wants to do pills instead since I don't have insurance. I pick up the steroid pills tomorrow.
I was sort of looking forward to the infusions since so many say that they feel better after. Hopefully the pills help too.....ugh. More time with Scott and the dogs at home I guess.

Acute Relapse

I haven't been posting much lately, for a few reasons.... One, I'm madly in love with Scott and prefer to spend all of my free time with him. Reason two, planning a wedding takes a lot of time and energy! We finally got the invitations done and in the mail (with a few remaining to mail....). And the final reason is because I have been exhausted. My fatigue has been getting worse and just yesterday my fatigue was so bad that I had to hold onto something to stand up for any length of time. My bladder issues came back with a vengeance (which have been under control thanks to some fancy drugs) and my legs were all kinds of crazy spastic yesterday (which were also under control). I called my doctor today and the verdict is that I am in an Acute Relapse and she suggests that I do a steroid infusion three days in a row. This infusion means that I get an IV of corticosteroids, usually Solu-Medrol. The nurse that I spoke with says that it lasts an hour or two. My doctor says that it is only about 30 minutes. The worst side effect can be insomnia but a lot of people also complain about a weird metallic taste in their mouth. Some patients claim that they feel normal, like before they had MS, for up to a couple weeks after their infusions. The nurse wanted me to be able to do it my home but since I am uninsured that could be super expensive so I have to go to the hospital to get it done. I have to say that the UW MS Clinic is extremely expensive (my last visit was over $500) but I love my doctor and the staff there. I was able to speak to my doctor directly today and the nurse has been in touch with me all day trying to get everything straightened out for me. Soon enough I will have insurance and can then get my much needed MRI and hopefully be able to afford all of the medicines that I need. My goal is to entirely change my diet to help manage my discomfort but for now I am getting through one day at a time and working with what we have. At least I get a full weekend with Scott (since I can't work) even if a bulk of it is spent at the hospital in the infusion room.


And here are some shameless plugs:
Dempster Wedding Blog

Wedding Registry

Quick Update

Long story-short:

*Scott and I are engaged and getting married August 28th (!)
You can read our story here
*I've been on Rebif for about six weeks and I am tolerating it well
*I am only teaching obedience classes for Sound Animal Services for six more weeks :(

I think that's about all the big news for today....hopefully I will get better at keeping this blog updated! I'm keeping busy with wedding plans and trying to spend as much free time as I can with Scott.