I was scheduled to leave to head back to Puerto Rico today. But I started feeling a little weird after Saturday's MS Walk. I started losing sensation in my lower extremities. My legs didn't feel right, to touch. So I decided to go to the Emergency Room. The last time I opted to fly back to work, April 2014, I ended being diagnosed with MS. So I figured something was 'wrong.'
Unfortunately my visit to the ER didn't give me much. My potassium and magnesium was low so I received a refresher and was sent on my way. But remember, I've not been on any medication for a couple of months now. I know I know!
Anyway, I'm not going back to work just yet. I need to make an appointment with my neurologist and get to the bottom of this. I'm now thinking back to my last MRI, where my lesions are and what areas of the body they impact.
This year's walk has been sort of rushed. I didn't put as much work into making it come to. It DID but it wasn't as together as I'd liked. I was tired. Drained. Stressed. But we made it through. It was actually sorta dreary. I'd gotten in late the night before, from Puerto Rico. Oh yeah, did I mention I'd working in PR now?! No shirts though. Everyone was to wear their favorite sports team.
I felt good. I got my laps in!
Theme: Play To Win
#TeamTasha #OnMyNerves
As I mentioned before, I had the opportunity to network with some people in San Juan that allowed me to get in to see a neurologist on the Island. I'd been in Puerto Rico, almost permanently, since January and need to find a doctor to coordinate my first dose (restart) of the Gilenya. I got in to see Dr. Chinea. It was a great visit. We discussed my symptoms and issues. He talked to me about the work/research (MS in people of color) he'd been doing with the University of Miami and looked forward to seeing me again.
I like participating in the walks in different cities/states. My coworkers joined me this morning in San Juan, Puerto Rico. The walk here is different than in the states. They have ONE BIG walk on the island. Everyone from all over comes here with the teams. It was really nice to see. I was also able to network with representatives from Novartis and the The Fundación de Esclerosis Múltiple de Puerto Rico (MS Foundation) to see a doctor on the island.
#TeamTasha #OnMyNerves
... now send me my medication. :-)
I'm reaching out to a local (stateside) Neurologist to set up my first dose observation and you know what they told me (before doing research, apparently), "I didn't know you had to do that!" So what you're telling me is, you have no idea about the medications that MS patients take. You don't have knowledge of other medications and presumably stick to the few that you do have knowledge of. That's discouraging. How am I supposed to feel comfortable talking to my doctor about something that concerns my health and you (or your staff) don't do the due diligence to perform the 'procedure'?
Ok, so now what?
As the new year is upon us, it's time for me to re-up my prescription,payment for the Gilenya. Somewhat unbeknownst to me. I didn't think about it. So I wasn't prepared for them to tell them they couldn't send out another shipment because my Co-Payment, as a part of the GILENYA Co‐pay Program, had expired. So here I am, trying to get that taken care of and hopes to do so before too long. Since, if I miss two weeks I have to start over. Or something like that.
Laissez Les Bon Temp Rouler - Let The Good Times Roll
This year's theme was my tribute to Mardis Gras season. We were able to get Best Team Tent this year. I got the chance to walk with #BabyBoyMcNear who's 9 months old.
#TeamTasha #OnMyNerves
