Friday, February 21, 2020

To Jax I Go

Got back from PR yesterday. Auntie and I loaded up the pacer this morning and drove to Jacksonville for a day of appointments. Now let me tell you how uneventful this was. 

David Building: First appointment was blood work. Second was a urine sample. One vile. ONE! But whatever. Now let's head over to the MRI at the Mayo Building. Mind you, I just had MRI's in January. But whatever, let's get this party started.  I'm going to listen to this Deborah Cox station and zone out. 

So maybe 20 minutes into a 2hour+ MRI session, they stopped to ask about those previous MRI's. Then we start again. Maybe another 10 minutes go by, and they stop me again to ask about the MRI's. They're concerned that because I just had them this may be repetitive. Ya think? We start again. Finally, they STOP, pull me out and the lead nurse tells me her concerns and that she doesn't think we should continue because we still had about 2 hours of images to take and if I'd already had images there was no need to continue. I agree. But you knew that. 

So now we have about 4 hours until my last appointment at the Mangurian Building. We decide to go for lunch @ Cheddar's. 

4:15 rolls around. It's a ghost town. I seriously think i'm the only person in this office. Why 4:15? Beats me. But again, whatever. We get the appointment done. I rush over to the Pharmacy to pick up my Specialty medication and head home. 

All is all, Jacksonville was a BUST! Except for the fact that I got my meds. 

Thursday, February 20, 2020

Do I really have to go?

That's what i'm trying to figure out? I'm just trying to get back on my Gilenya. So, apparently I HAVE to have this follow-up visit with the doctor's at Mayo before I can proceed. I did tell them that buuuuut that fell on deaf ears. 

2/10 - Reached out to see when I can get the observations scheduled. 
2/14 - No reply. Sent another message because based on what the folks at Gilenya are telling me, they can send someone to me to do the first dose observation, locally, and not in Jacksonville. And I thought once I'd don the eye exam, I was ready to be scheduled. 
2/18 - I got a reply. They've received the meds and are scheduling. I asked if I could bring the medication back home and do the observation here. According to the Gilenya folks, I HAVE to do the observation in Jacksonville "based on my medical history". They actually told me that if I wanted to do it locally, I needed to have is prescribed by an local doctor. WHAT? And start this process over again?  
2/20 - Am I coming to my appointments? Of course I am. I'm trying to get this show rolling. But somewhere in there, now it's ok for me to take the meds with me? 

ugh, this back and forth was ridiculous. 

Wednesday, February 12, 2020

Paging Dr W

I was supposed to have a follow-up appointment with my Neurologist, a week after leaving the hospital. I'm a little behind on that. Well, a lot on that. But I made it today. Things are still moving on. My legs are feeling better. 

I am, though, still not on the MS meds. Too many conversations back and forth, between Gilenya Go Pro and the doctors at Mayo on that and nothing's moving. He did say that if things didn't progress by my next visit (Feb 21), he will push on his end. Yay! 

I go to work next week. First time traveling back to Puerto Rico since December. 

Thursday, January 23, 2020


Good morning. We're up and at'em. Can't really describe the legs but they tingle on the inside.  Sometimes achy. Not totally stable but that could just be a nerve/signal issue. The sensation (to touch) of my lower isnt all there even though they seem better. I'm not as drained but still want to lay down. I 'feel' like I have to be careful when driving but I got #Babyboymcnear to school (with his shoes on the wrong feet, lol) and back.

Wednesday, January 22, 2020

...and Wednesday

Good morning.   I slept better. Less potty breaks. No dizziness. My legs dont feel AS strong and ready for the world yet.  Still tingly and somewhat weak feeling.  Still going to take it easy today but right now,  I feel ok. 

Tuesday, January 21, 2020

First day home

First night home was a rough night. Frequent potty breaks. Cant sleep. Super dizzy and lightheaded when I get up. Very hungry at night. Two bowls of cereal at 4. And my symptoms arent totally better so my legs feel restless. Felt a headache creeping it and my shoulders tensing a little again. 

By the end of the say I felt drained. The dizziness has subsided (so far) but my legs feel wobbly.  They tingle. The outer sensation has somewhat come back but my legs as a whole aren't as together. Slight ache to them at times. Bloated. Gassy. Drained. Maybe tonight I'll sleep better and tomorrow, all will be great. 

Monday, January 20, 2020

Hospital Bid...

I have to admit, I opted in for this so I'm not complaining about being in the hospital. The food isn't the best or even what I ordered sometimes, but I'm eating. The people on this floor are pleasant. One thing I will not get used to is being stuck. I'm no punk but after the 3rd or 4th time, it becomes a nuisance. It's my fault, I guess. I don't want them putting an IV in my hand and preferably not the crease of my arm or wrist. Why? Because those areas moves and bend A LOT and well, the hand HURTS! So, I tend to get stuck a lot if they can't find the "right" spot or even the right person to do it. Unfortunately, it ended up in my arm. 

Exhibit A lol
Exhibit B
Ultimately, I got in and got out. I had fluids for a day and was done with that. Twice a day I had to be hooked up for steroids (30 minute sessions). My blood pressure had it's ups and do... ups! Ended up taking something to get it down. And at some point my head began to hurt. I was using my lavendar and peppermint oils and even my T.E.N.S machine. So with my headache, shoulders and neck aching, blood pressure being high, I had to call in some reinforcement. A masseuse. So THANK YOU to Lucky Massage Therapies for coming through for me. 

Thanks to my family for bringing me snacks too. I ate my fair share of chocolate pudding while there but did get some Chocolate Bread Pudding from the UCC and had my snacks on deck. 

Took a minute to finally get out of there. I'd actually had my discharge papers ALL day and the nurses were checking with the pharmacy to see if they could get my dosage sooner rather than later. Because we had an IV issue the night before I missed my last dosage so, in order for me to finish out the doses, I have to stay until I can have that last dose done which is 10pm. After lot of conversation, I did get it at 630. 30 minutes and then i'm blowing this joint. I walked in here and I'm walking out.  

Unfortunately upon leaving I wasn't 100% but the steroids are not supposed to HEAL me. My MRI didn't show any significant changes from last year's (April 2019) MRI. Let's still feel a smidge wobbly but I'm making it.