Many times, I go on these lovely breaks. Usually because life is either busy, or I’m too tired to do more than my day-to-day stuff. I’m awake late tonight because I am on my third day of prednisone taper following my 3 day steroid IV Tues-Thurs.
Steroids have always been good to me and have managed my MS relapses well. I was quite busy today (and somewhat productive) and am still not sleepy, thanks to the lovely steroids.
I need to blog to keep track of this next journey in my life – The one where I figure out what I will be doing next to manage my disease. It’s not an easy decision, but it is one that needs to be faced soon. I was on a very heavy MS drug for 3.5 years, and I still ended up with active lesions on my brain. Booooo.
Hopefully, I’ll blog with more pictures and happy times at home. Summer is upon us. We have an amazing backyard coming together nicely. I am very hopeful that we will have good times this summer!
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.
I am so tired of feeling bad. I’m incredibly fatigued in general. My legs are heavy – it’s tough to move around as much as I would like to. I’m limping on the left if I move around a lot. My right eye is bothering me again. My left arm is dis-coordinated. I’m having a bit of trouble finding words. This is so incredibly frustrating!
Although today is better than yesterday and the day before and the day before, so it goes to show you how bad things have been since last Friday.
Please let Monday come soon, and pray that Gilenya works for me! I need some stability in my life and stability with this disease!