Tag Archives: Treatments

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Monday’s here again

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My to-do list from last Monday is still sadly open and unfinished.  Life decided to throw me a curve ball, as usual.  My eyes decided to get worse throughout the week, prompting a call to my neurologist on Wednesday which ended up getting me on a 5 day course of IV steroids. I had to drive downtown on Thursday evening to the infusion center, go to the hospital on Friday, get a home health care nurse to come out on Saturday and Sunday, and I had one more hospital visit today. Needless to say, we decided to postpone my youngest’s official 5th birthday party so that I could get all this stuff taken care of.  The highlight of all of this was my ability on Saturday to see well enough to take my kiddos to the movies.

Right now I am still struggling with the vision in my right eye. It’s actually taken quite a while to write this post – thank goodness for spell check! The left eye seems to have gotten a bit better. Now we just wait to see what magic my medication will have performed  *fingers crossed*  Hopefully, I’ll be able to relax a bit tonight after the boys go to bed and let my body start to really heal.

HSCT

The sound of silence

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Tonight I am home… ALONE!

My kids are at my parent’s because I have a home care nurse arriving at 8am for my IV steroid infusion and I didn’t want to subject the boys to that, nor subject the nurse to crazy a 5 and 6 year old running around like they do every morning.

My husband is working the night shift tonight.

This never happens – I actually think this is a first. I am here, at home alone. No sounds to be heard, no phones ringing, no TV on, I won’t need to wear earplugs when I got to bed tonight, my alarm will be off in the morning, no kids will wake me up.

Right now there’s just the clicking of my fingers gently hitting the keyboard as I write this.
And when I stop typing…

The silence is beautiful!

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Losing sight of what is important in life

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There comes a time when you lose sight of what makes your life special, interesting, amazing, and you just plug through day by day feeling down and low. I haven’t been blogging because my mom always said “if you have nothing good to say, don’t say anything at all”. This blog was meant to be about my children and has started to become a blog about my life with a bit of kid stuff thrown in. I am not sure if I should keep this blog as a “mommy blog” and start another one which chronicles my life with disability, or if I should just keep everything in here. I’ll sleep on it for now…

Now, for the literal meaning of this post.

I am losing my eyesight. Makes it tough to blog on the computer. My vision is blurry, pachy, and just messy all together. It’s difficult to see the computer screen most of the time and it takes me about twice as long to read what I type or what others type. I just got off of a 3 day IV solumedrol infusion and have not had any improvement in my eyesight yet. I had to stop the MS medication I was on, on February 19th, because it obviously wasn’t working. I had new activity on my MRI and my eyesight was getting worse. On top of that I was starting to have heart palpitations, which as a rare side-effect of this medication (Gilenya) can kill ya possibly. Not a very good situation at all.

There is good news though!!!

So, the good, amazing news is that I have been accepted into the only U.S. Stem Cell study for M.S.

This is big!

This is huge!

Here is a link to the study. I already received the paperwork and will be scheduling my surgical removal of bone marrow sometime in end of May. This is such a wow moment for me. I am so incredibly excited and I hope to be able to be on the forefront of hopefully reversing and/or curing Multiple Sclerosis as a part of this research study.