A good day

I completed my third daily IV steroid infusion this morning at the clinic which moved to Allenmore Hospital in April. I am happy about the move as it is much more convenient and pleasant for the patient. I'm feeling much stronger today, able to take several steps without my walker. Steroid "edginess" is at minimal level. The glow in my face is a nice change from the pale and tired look. I'll feel better when the temperature tones down just a touch as heat+MS+steroids does not a happy camper make out of me.

After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.

In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.

I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.

Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)