Changing Locations

I've decided to create a new blog for Scott and I. This blog goes back for a few years to a different lifetime for me so I wanted to start fresh. All future family and health updates can be found at Our Journey.

Infusions = Success?

The infusions actually made me feel better and didn't mess with my sleep so much that was unbearable. They caused some weird pain in my arms like brittle bone pain but I felt almost normal by Saturday and since my doctor took me out of work for another weekend I decided to take advantage and spend some quality time with Scott. He went with me to the hospital for my last infusion on Saturday.
Overall, I think the steroids did help and I will do them again if I need to.

Solu-Medrol Infusions

I called my doctor Wednesday because I'm not feeling any better. She decided that I needed to go ahead with the infusions. I did my first Solu-Medrol infusion yesterday and have to go back today and tomorrow for more. Basically I sit with an IV of 1000mg of steroids pumping into my vein for 30 minutes. The only noticeable side effects were a horrible metallic taste in my mouth that made food taste awful and an increased appetite. I had slight heartburn but I'm not sure if I can blame that on the steroids or the fact that I had Taco Bell right after.
Can't wait to get the bill for this little adventure. I just hope that I don't get the insomnia that other patients complain about after their infusions. I can deal with some more heartburn and some increased hunger (which is welcomed since one of my MS symptoms is no appetite) and the gross taste in my mouth, but do NOT mess with my sleep!

Thank God For Netflix

I'm off work until next Wednesday due to my relapse...this is extremely frustrating. I'm so exhausted and there is nothing that I can do. Thank God for Netflix and my super amazing Scott who is picking up loads of slack these days. Just feeding the dogs completely wore me out. I've never wanted to do dishes more in my life because I can't! I'm looking forward to going down to the farm this weekend and doing some wedding preparations even though I will just be on the sidelines.

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