Wednesday, January 29


Well. I went to Sears Optical Saturday. She shone all kinda light in meh eyes and supposed to send the results to the MSCA at which point I'll find out if I have to go to an ophthalmologist and have something else done *Sigh*. Why is nothing ever simple? I did speak to Julie yesterday (the Gilly nurse who called me first) and she confirmed that there's not a specific ME test that needs to be done so I might be ok...time will tell.

The TB I went on Sunday to a CVS Minute Clinic, paid my $39 and got it done. I was instructed to come back in on Tuesday after 3pm or Wednesday before 3pm. I planned to go back in on Tuesday...well u know what they say bout the best laid plans. As it turned out, I'm starting in-home PT in a couple weeks and a nurse was to come here on Tuesday too so I thought,"ooooh. If she can read the test, I doh even have to go back to CVS". I called her, she could do it. I was in business.  Cept that Tuesday was the day that Mother Nature decided to unleash her fury on Georgia (it was 2 inches of snow which in GA might as well b 2 feet).

  • The first thing that happened? The nurse called to reschedule. She'd been sitting on the highway parking lot for 2hrs. 
  • Then I spoke to G; she too was sitting in traffic and ended up taking 4hrs to get here. I kissed that $39 goodbye because I knew that there was no way I'd get the results. Wednesday is supposed to be less cold but I know that the roads will still b a mess so I won't b out there...I HATE fcuking winter!
  • (btwtoday is Wednesday - some people still stuck on the roads in accidents and all kinda shit (now reaching home since midday yesterday) - steupsEVERY year, atlanta goes thru this crap - the officials doh learn?????)
I'm heading home on Friday...will be back on 2/8.  I'll deal with everything when I get back - I'm thinking hot thoughts and dreaming of a glorious week in Trinidad - I have no time for MS or Gilly.

Friday, January 24

Moving Along


So I had to call back dr. Gilbert's nurse Monday and leave another message that I just needed to know how/where to get all the tests needed to start Gilly (Gilenya - G2 coined that term). I crossed my fingers and hoped that by the time I spoke to her, she'd tell me that I could go anywhere and that I wouldn't have to trek back into the MSCA. Going there would mean that I'd have to take time off and pay to park and...and...and.  I already knew that I wasn't in the mood. 

She called back...there was good news.  I pretty much can go anywhere to get both tests done. I have an appointment at Sears optical on Saturday (made Monday) for the eye test and confirmed with a Walgreens clinic that I can just walk in any day for the TB test to be done. I just started a new job so I don't want to start taking off already. I done hadda take a sick day for my first dose. 

So...once those are done, I'll be on my way (wrote these 1st few paragraphs Monday).

U know how when you're speaking with someone on the phone and even tho u are speaking MOST clearly (and sometimes slowly) and they saying everything u actually want to hear but u still jes don't trust them and r convinced they talking shit? Ever happen to u? Well...that's the feeling I got when I was talking to the Sear's Optical lady. Anyhoo, I didn't worry, I figured they'd call to confirm so I too, would confirm that they'd b able to do the Macular Edema test.

Today is Friday so, of course I got the call to confirm for tomorrow. So, once again, I told Meena very clearly that I had to have the ME test done so I needed to b sure that it could actually be done there (I would be MOST PISSED if I get there and I'm told no).  Meena said to me, "I don't think dr ray can do that. U normally need to go to a specialist to do that."  I sighed inwardly - I KNEW IT!!!

 But then she said,"let me find out for sure and call u back." She called back...we were good to go.

15 minutes later, my phone rang again from the same number hmmmmm. I was Dr. Ray. She called because she wanted to explain why they were asking so many questions (I'd eventually had to tell somebody exactly why I needed the test). Anyhoo, turns out her best friend has MS too and is on Gilly so she had to do the same thing. Now, truth be told, she was kinda confusing me lil bit (she kept flipping between she needed to give me a referral and she could do the first exam) so I eventually asked, "ok. So u'll be able to do whatever tests needed to get the baseline and get me started on it?"   She answered with a resounding "YES".  I'm going in Saturday at 4...wish me luck!

Stax (dunno what happened to my signature)

Tuesday, January 21


I like small cars! I've been told that I drive like a bat outta hell. I prefer to think of my driving skillz as aggressive, adept and able to hold my own on the road. I like small cars and prefer to drive them. Stax3 is a 2 door civic coupe and well…you've seen how big Stax3.25 is. Love my car - it's so easy to zip in and zip out when I need to.


  • Whenever the parents are here, poor things, at least one of them has to fold up herself to get in the back seat. If G and I are in the car then they BOTH have to squeeze up dem ole ;-) bones to climb in the back - not cool. 

  • When I'm by myself I cyah use the scooter because even tho it can b easily dismantled, I can't do it by myself (I know that this has nothing directly to do with the fact that the car has 2 doors) so clearly I need a car that can hold an "un"dismantled scooter. 
Ugh! Stax4 was supposed to b a deep red g35 coupe but that dream is no more. I'm slowly coming to terms with the fact that I'll probably need a bigger vehicle (that's so NOT my style AND i don't like anything big) so that I can potentially drive the scooter in and b on my way. It's in my "to do" list for 2014.   I'll probably need to practise driving before I get on the road; Stax3 can get into so many little spaces.  

MS - 1, Stacey - 0 

Friday, January 17


Well whadouknow. My phone rang on Wednesday and when I looked at the number, it was all 0s. Hmmmmm?!? I answered. It was a chick named Julie looking for me and wouldn't u know it, she was a gilenya nurse. Really? So quickly??anyhoo, she was calling to get me started on the drug. Wow! Results haven't come in yet, but someone is actually calling ME to get shit moving along? I was impressed.

Julie confirmed all the necessary shit to make sure she was talking to me and then asked what I'd gotten done and when. I told her that as far as I knew I was only waiting for the blood results and that was it.

  • Right? WRONG! 
All the peering the doctor did into my eye blinding me temporarily Friday? That wasn't the eye test that I had to get done. Found out I actually have to go get a Macular Edema test...woulda been nice if someone had told me that. Geez!! She said that I could call my regular eye doctor to see if they'll do it. Good. That'll save me some heartache...well. Turns out they don't do it so I have to find somewhere that it can be done. Steups!

The next bomb she dropped on me? The MSCA requires a TB test before I get started. Wait...the MSCA? The place I was just in??? Did anyone tell me that??? Nope! So now do I have to go back there to get that done??? FCUK!! The thing bout the TB test is that they inject something under ur skin then u have to GO BACK in for them to look at it to determine if u have it. I can read the damn thing myself. Steups! Well I left a msg for my doctor's nurse to call me back so I can find out if they need me to come in or can i go somewhere else for that TB test. nothing is ever easy/smooth sailing

I asked her about the waiting period between the 2 drugs and interestingly enuf she wasn't aware of any but she was going to find out and call me back on Thursday.'s now Friday

the nurse at the MSCA has NOT called me back…I just hung up from Julie.  turns out the waiting period between the 2 drugs is 2-4 weeks.  i stopped tecfidera last week wednesday…so, just have to get the 2 tests done and i'll be on my way.

Wednesday, January 15


Was my did I spend my birthday? Being poked, prodded, blinded and stuck at the MSCA!

Since my titer levels are too high and I cannot go back on Tysabri, I went in to be evaluated to start Gilenya...sigh.

I saw a doctor in the Internal Medicine department. He:

  • listened to my heart
  • put the stethoscope on my back while I took deep breaths
  • shone a BRIGHT BRIGHT light in my eye and looked into it
  • asked me to follow the light with my eyes (not my head) 
  • and an EKG. 

I guess he was happy with what he saw because he partially approved me. 

"Why partial?" you say. Because they needed blood (to test for? I haven't a clue). Anyhoo, so I went to the chick for her to draw blood. Well, she stuck the right arm some point, I said to her,"would we  actually see the blood in that tubing (i was hoping it was a new type of opaque tubing so we couldn't see thru it and my blood was actually flowing)?" The answer was yes. 3 drops of blood came out. Did I mention she had to draw SIX VIALS?!?! Sheesh! She went into the left arm and blood in ah bungahlation - go figure. 

Anyhoo so the next step is to wait for those results and then (of course) there is a waiting period (doc couldn't tell me how long cuz he is not a MS doctor) between the 2 drugs. I'm going to do as much as I can so that once the waiting period is up, I can get started on Gilly!

happy birthday to me!

Wednesday, January 8

Oh Geez

So. Yesterday, I got the call re:my titer levels.  They're too high and I can't go back on tysabri…SIGH.

My doctor will like me to get started on gilenya as soon as possible. In fact, I was instructed to stop the Tecfidera one time. So I go in on Friday afternoon to get checked out for gilenya - essentially, they have to make sure I'm healthy (other than kiss meh ass MS). They need to do:
  • An EKG
  • Ah eye test (cuz one of the potential side effects is macular edema)
  • Blood work
After those results come back and I'm given the okay, the first dose of gilenya will be scheduled. This drug slows down the heart rate the first time it's taken so they monitor patients for 6 hours that first time - "I can't fcuking wait"...Ur heart rate goes back up (usually) by the end of that time period and will eventually go back to normal in 30 days. 

Gilenya is a once a day pill and Dr. Gilbert actually prefers it to Tecfidera (he says it's a stronger drug) so we'll see. Stacey prefers and wants Tysabri but I guess we can't always have what we want.

i hate fucking MS