Category: Random Thoughts

the last time i went to see my neuro, Dr. G, he told me specifically that he wanted me to have 2 sessions of steroids 3 weeks apart and that even tho there was no waiting period with switching from Tysabri to Tecfidera, he wanted the Tysabri completely out of my system first (should have been my first clue that there is some kinda waiting period).  anyhoo, so i left the exam room, went to the front desk and made my 2 steroid appointments – 5/10 and 5/31.

last week thursday, my phone started blowing up from the MSCA.  well i’ve been really busy, so by the time i called the chick back, she’d just walked out the door.  finally (after some more phone tag) we connected Friday just before it was time for me to leave for the appointment.  that’s when i found out that:

• steroid sessions are supposed to be 4 weeks apart
• there is actually an 8 week waiting period before which i can start Tecfidera

STEUPS!!

He told me that i could start in the first week of June, hence the reason i should be getting my shipment today (or tomorrow)…well luckily i didn’t actually start anything so i’ve pushed my start date to 6/9.  when she found out that i’d only had 1 steroid session, she said that it would be okay to keep the appointment on 5/31 even tho it had only been 3 weeks…i just cyah bother get all upset; makes no sense but would have been nice to know all this up front.

• i am no longer afraid of falling (sort of).  i don’t WANT to fall but it’s such a part of my life now that i don’t fear it as much as maybe “hope for the best” when it happens (which has not been a recent occurrence *knock on wood*)
• walking between cars is a non issue (for the most part) since i have my handy dandy cane (i’m up to 10 by the way…excessive?  maybe but i don’t care)

the others are still on the list…fear of not being able to walk, pain, the unknown (all justifiable in my book).  in addition, i am afraid of…

sneezing when i’m not around something that i can hold on to.  those who know me know that this is can happen often.  my sinuses don’t act up like they used to but i sneeze more often than a regular person (i’m sure) and if i’m walking or can’t hold on when it happens, it’s a precarious position for me.

walking in the wind.  “what??” u say.  1 of the earliest memories i have of myself is walking in Toronto between my aunt and my mother in my little red, shiny jacket.  it was WINDY and as they were walking forward each holding 1 of my hands, the breeze was pushing me back! well. it’s the same thing now…i just know that i’m so friggin shaky now that a lil hard breeze will send me packing – cane and all – and i’m deathly afraid of that happenin.

cooler fete 2013 was NOT shut down..we partied and had a good time till 6am the next morning and weren’t bothered at all by the morons 🙂

hopefully the promoters will continue having the party in that place going forward and the fete will get back its good vibe that it’s been lacking for the past few years.  i used my scooter and it was FULLY initiated – it wine dong d place (and get wine on), drank alcohol and even had a doubles or 2 – lol…all in all a rhell good time.

Nothing to report on the MS front…i go back for my 2nd steroid treatment on Friday and start Tecfidera next week.

On another note.  got a phone call today asking me when was my last infusion and shouldn’t i be thinking about scheduling May’s infusion right about now?  the call was from THE SAME PEOPLE WHO CALLED THE LAST TIME TO SCHEDULE THE TECFIDERA!!!!!!!!!!!!  oh my goodness – the shit is right there “in your computer” (as the people say).  i’m happy to report that i didn’t get my panties in a bunch, i didn’t have any attitude.  i just rolled my eyes, sighed inside and answered the lady’s questions.  one of the questions she asked me was, “did you talk to your doctor about this?”…sigh.

i know allyuh feel i make this shit up but i swear to u, it’s the truth.

cooler fete 2013 was NOT shut down..we partied and had a good time till 6am the next morning and weren’t bothered at all by the morons 🙂

hopefully the promoters will continue having the party in that place going forward and the fete will get back its good vibe that it’s been lacking for the past few years.  i used my scooter and it was FULLY initiated – it wine dong d place (and get wine on), drank alcohol and even had a doubles or 2 – lol…all in all a rhell good time.

Nothing to report on the MS front…i go back for my 2nd steroid treatment on Friday and start Tecfidera next week.

On another note.  got a phone call today asking me when was my last infusion and shouldn’t i be thinking about scheduling May’s infusion right about now?  the call was from THE SAME PEOPLE WHO CALLED THE LAST TIME TO SCHEDULE THE TECFIDERA!!!!!!!!!!!!  oh my goodness – the shit is right there “in your computer” (as the people say).  i’m happy to report that i didn’t get my panties in a bunch, i didn’t have any attitude.  i just rolled my eyes, sighed inside and answered the lady’s questions.  one of the questions she asked me was, “did you talk to your doctor about this?”…sigh.

i know allyuh feel i make this shit up but i swear to u, it’s the truth.

we discussed the ampyra and then i asked about Tecfidera (oh boy.  i figured i might as well schedule it now because i’ll wake up tomorrow morning and it’ll be June)…he had to transfer me and placed me on hold.  of course

8 minutes later…

someone else answered and original fella was GONE so i had to explain myself all over again (of course)…and i won’t give u all the details but my question was,

i guess i shouldn’t complain.  the shipment will arrive on 6/4 and i’m only paying $10!  let’s keep things in perspective after all.