Another exacerbation

Here I was thinking things were going so well. Actually, they were. Until Saturday when I  started having vision problems and pain in my left eye. I sucked it up and was hoping it would go away......my husband ratted me out to our family Doctor though. Set me up an appointment and in I went. Knowing full well what I would be told.

I have optic neuritis in both eyes. Now waiting to hear from the home health agency to see when they are going to start my infusions. The doc wanted them started today. Doesn't look like that is going to happen. Haven't even heard from the pharmacy regarding IV delivery.

So, I wait.....bad attitude and all

Still here

Wow. I hadn't realized it had been so long since I blogged. The summer has simply flown by. Fortunately, not too many issues with the MS this summer. )BIG difference from previous summers). I've been staying home with the exception of a planned vacation, so I'm sure it's the air conditioning that made the difference.

Dad is doing better. Made a trip to visit he and mom this summer. While the heat of the mid-west this summer has been hard on him, he's been holding his own.

I hope the summer has been good to all of you. You can continue to follow me on HowIfightMS.com  See you there!

busy, busy, busy

Wouldn't it be great if MS took a break when life got tough? We've been dealing with a stressfull family issue for the past 6 months (my pop has been really sick). As if it's not bad enough to deal with that level of stress I had to do my best to conceal my returning MS symptoms from my family. All my family need was to worry about me as well. So, I kept on pushing myself. Past the wall of MS. I think I did fairly well. There was only one day that I was there (in two weeks), that I allowed myself to succumb to the train wreck fatigue that comes with MS. Other than that one day I waited until I got home to really let myself go. I hit the bed and didn't get out of it for three days (other that for a doctor's appointment the day after I got home. I am so tired of MS controlling my life. The meds, the shots, the balance problems, the cognitive issues, the fact that I often have hard time speaking. UGH The list could go on and on.

Fire's Back

I take 12 pills a day (Not to mention my shot) to keep my MS symptoms at bay. We'll they aren't working. The neuropathy in my legs (FIRE) is back, my fatigue requires a daily nap and my hands aren't working right. In addition to joint pain (and of course the back pain that I battle on a daily basis due to an injury almost 3 years ago). I'll tell you, life with MS sure isn't for the weak or the faint of heart. The risk of falling flat on your face (literally) is always a possibility as the disease progresses. My wheelchair and walker have become my best friends. Thankfully my human friends have accepted my D.M.E friends and aren't intimidated by them. That makes a world of difference. I've read blogs where people have lost friends because their so called friends can't accept watching them go through the process of MS and using the equiptment. Thankfully, I haven't had that problem. My friends get me out of the house once a week minimum for lunch, dinner etc. They have become pro's at handling my wheelchair and walker.

SO while my symptoms are flaring up I choose to concentrate on the positive.......my wonderful friends who make sure I am STILL able to have a life outside my home.

Been awhile

It's been awhile since I blogged, but life has a way of throwing you curve ball's and making other issues in your life the priority. The last 6 months of 2010 my dad was pretty ill. I spent  a considerable amount of time there during the end of the year.

Then of course, I had an MS flare up in the midst of it all, then I'm still fighting my chronic back pain and jumping through way to many hoops to get it fixed.


I hope you all have spent the last six months in better physical health than I have. I underwent a round of IV steroids as well as steroid eye drops for another round of otic neuritis. Just when I though I had the chair beat, back into I was. (I'm back up to using the walker, but it's iffy most days).

I rarely have a day that I don't have the consious thoughts of MS running through my head. I remember when the symptoms of MS, for me, were so mild that after my daily shot, MS was an after thought. I hope I see those days again!

Gilenya outrage...

As with other MS patients I have been eagerly awaiting the availability of Gilenya. I'm sure you've heard of the drug. The new ORAL MS medication approved by the FDA very recently and available this week in the US by prescription. I was very excited, as was my entire family to hear that the FDA finally approved Gilenya. In fact, my sister heard first and send me a text message about 40 minutes after the drug was approved. I was so excited that I picked up the phone and made an appointment with my Neurologist for October 20th to talk to him about it. I had visions of no more needles and Immuran dancing through my head.  


SCREECH went the brakes on that vision as soon as I read the Bloomberg report on the WHOLESALE price Novartis intends to charge for the drug. $4000.00 a month! Thats right..4 THOUSAND dollars PER MONTH. WHAT?!  Hey...I understand the concept of profit and how expensive research is as well as the next guy does, but honestly. $4000.00 per month for a ONCE A DAY pill?!?!?  Thats 133.33 PER PILL PER DAY..and that's the WHOLESALE cost. 


All I can say is SHAME ON YOU Novartis. You have successfully out priced your medication from the very people that need it. Do you REALLY think my HMO is going to authorize Gilenya when it can pay for both my injection AND Immuran for less than $1500.00 per month?? What about the folks that don't have insurance?? Like they can come up with $4000.00 a month WHOLESALE. SHAME ON YOU!!!