Back in the Saddle

I’ve been missing in action for some time. It’s just one of those things I s’pose – this blog’s life cycle. So, what’s been going on for the past year and a half? well…honestly not a whole lot because… Covid, although 2020 actually started off really well. My birthday is in January and I threw a birthday party in February, one week before flying home for carnival. That was a fantastic time and I remember while there for a week after carnival activities, reading about this virus that was first detected in China and had started spreading etc. At the time, it wasn’t completely startling but by the time I’d touched down in Atlanta, everywhere started shutting down and the year morphed into a completely surreal time. It was astonishingly weird year, and it was a year of a couple “firsts” for me. First time I ever spent Christmas by myself, first time since I started going out on Old Year’s night, that I was sound asleep at the stroke of midnight on December 31st (I didn’t see the need to stay up to ring in anything or cheers to myself). The original plan was to go to Charlotte by G2 and family but as the time drew closer, I realised that it just wasn’t feasible, so I decided that I’d stay put. I wasn’t happy and certainly wasn’t looking forward to the season, but it came, it went, and truth be told in the grand scheme of things, I guess it could have been much worse.

Early in 2020 I was of the mindset that I won’t go get the vaccine first; I’d let other people go first, see how things pan out and then I’d line up. By then end of 2020, I couldn’t wait to get in line because while I like my “me” time and have no problem limin with me, I was sick and tired of me and couldn’t wait to start seeing people again. My “release date” (2 weeks after dose II) was April 24th 2021 and we organised a small lime in Eclipse soon after that. It was so very good to see each other after a whole year – u have to understand, we limed regularly pre-Covid. Not limin or seeing each other for a month was unheard of, far less an entire year! We I thought that it was the beginning of going back to normal, ugh it wasn’t. At the time I don’t think that I’d realised yet that Covid is not going anywhere. These days, I firmly believe that everyone is going to get it; it’s just a matter of when and how each person will be affected. I would like to delay my getting it for as long as possible – in fact I don’t want to contract it at all – so I wear masks everywhere and try to be as diligent as possible regardless of where I am or who I’m with.

As far as the ms is concerned. Things are still stable although my opinion is that my disability has worsened lil bit. It’s hard for me to explain but I’m still able to do everything that I’m used to, it’s just that I sometimes feel like things are a little worse. For the majority of 2020, I wasn’t active; at least not as active as I used to be and I couldn’t go to therapy – that probably took some kind of toll on my body. Interestingly enough though, I’ve run into a couple people who haven’t seen me in a while, and they’ve remarked that I’m moving well. I don’t know but it’s just one of those feelings. The good news is though, that I was sent for an MRI in July 2021 and there was no evidence of disease activity so that’s a win that I’ll take and move right on along.

Anyways, keeping this a short, general recap of 2020/2021. I’ll be back…certainly have more to talk about and to share.

Hol’ it down. Take care and be safe out there,
Stax

Finally

I’m finally back to “normal” after Miami.  If i have to b honest, i was a lil scared for a while there.  It was so strange…so good in Miami and then i come back here and was a completely different person.  I was so shaky (much shakier than normal) and unsure of myself, i was even afraid to go anywhere on my own (so i didn’t).  i was hopeful that my body was just rejuvenating itself/getting over a hectic weekend, but at the same time there was a thought in the back of my mind that Miami was my last hurrah!  the end of the good times and i’d have to make adjustments.  Was I upset that i’d gone and had such a good time?  HELL NO, but…

 Well everything is back to “normal” now.  Life as i know it can go on…

   

In other news…

i think we’ve finally found a winner!  After 19 months of trying, we have finally found the vein that works.  For the past 3 infusions, i’ve only gotten stuck once and the nurses have had NO problems filling up 3 vials of blood.  I don’t like to use the normal vein where everybody goes (inside the elbow) because that would mean that i’d have to keep my arm straight for 2 hrs (not happening!)…so they always have to go look for other veins to use.

Well this one on the inside of my left wrist is a winner – even I can see it sometimes!!!  better late than never i s’pose.

Forward Progress

I called my neuro’s office today.  The prescription has been submitted to the pharmacy.  Of course there was an initial problem because my name was input incorrectly (WOW really?  I’m shocked) but it appears to be moving along.

I called the pharmacy to confirm…that chick (who of course said to me that she couldn’t find me when i told her my last name!) eventually found me when she opened her eyes to look and told me that Sheila (my case manager) will call me as soon as she has confirmed my benefits with my insurance company.  She stressed that i need to give them time to confirm with the insurance company (in other words, don’t call us, we’ll call u)

So as usual…as with anything MS related, i’m playing the waiting game once again.

  • Waiting to see what (and how) a new symptom might present itself and affect me – my life!
  • Waiting to see if i have additional scarring on my brain
  • Waiting and hoping that my medication is actually working and slowing the progression of this GD disease
  • Waiting to be approved by the insurance company to get drugs that will help me overcome of the symptom of a disease that have (and dint ask for)
Geez!  nothing is ever easy…

Well…

My doctor’s visit didn’t really go according to MY plan.  It’s not bad news, but i havent gotten a prescription for the new drug.  UGH!!!

I have to be approved by the insurance company BEFORE i can get the drug.  I have started the process…the forms have been signed, but it will be a few weeks before I am approved (by every Tom, Dick & Harry); who knows when i’ll actually HAVE the drug in hand….again, oh well, not much i can do about this.  At least the process has started.  He also told me about an alternative to the Ampyra (in the event that i am NOT approved or the cost is astronomical) that will be cheaper and i won’t actually have to go thru any kinda approval process.  Maybe more to come on that…

I have to admit, i never went to see him regarding my walking issues.  I didn’t think that it was a sypmtom per se, just the disease progressing along it’s awful course.  Well he got to see me first hand yesterday and is concerned that i may be relapsing!  Oh Lord…really?  As a result, he has sent me for a brain/spine and thoracic MRI; a brain MRI is long and torturous enuf, I wonder what all of them put together must be like.  Not looking forward to it really…but again, what can i really do?  The other thing he informed me is that i am suffering from Spasticity.  I’ve heard of/read up on Spasticity before, but i thought that it manifested itself as jerky movements accompanied by pain…didn’t realize that the stiffness/weakness that i suffer from is also part of it.  To help with that, he has given me some muscle relaxants.  He also mentioned my going on steroids to help with it, but i told him that i’d rather NOT do that, so will try the drugs (i have no problem taking drugs) combined with PT and hopefully, things will get better. 

  • Where the hell did I pick up this disease? 
  • How am i the “lucky one” to “pick up” this disease?
  • Why me?

Soooo many questions that i have no answers to…it is what it is, i guess.  I didn’t ask for it and can’t return it so i just have to deal with it!

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