Losing sight of what is important in life

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.

Gilenya = Fail

Ok, here’s the scoop:

I’m still waiting on my IgeneX lyme test results.

I am off Gilenya for good because I was having bad, scary heart palpitations and am currently relapsing with loss of vision in both eyes, cog fog and weakness in my left leg.

I have an MRI tomorrow afternoon, after which I am starting a three day course of IVSM again.

Then I have a washout period of no medication and will be likely starting Tysabri.

Thus far, I have had Copaxone, Avonex, Gilenya, 2 CCSVI procedures, LDN, and 8 IV solumedrol infusions.

I am so ready for something to give, finally for the positive.

Looking at Yourself in a Steamy Bathroom Mirror

I have to apologize if my spelling sucks today.

I am having issues reading stuff on the computer because parts of words blur out on me. I try to go back and look to see if I wrote everything correctly, and I see weirdness – those of you who experienced Optic Neuritis would understand.

It’s basically as though you are trying to look at yourself in the mirror of a steamy bathroom. I am seeing my opthalmologist tomorrow to get my vision checked and to have my visual fields done. Right now, I am not sure it’s ON but rather the large lesion in my occipital lobe acting up again 

I have to get off the computer now for a bit because my eyes are going wonky and starting to hurt.