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. 

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. 

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

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.

...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. 

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. 

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. 

Rest, they say

...they lied. You don't rest in the hospital. But my plan is pretty simple. Steroids, twice a day, for about 30 minutes. And a few rounds of fluids. Piece of cake. Just let me rest, lol. 

I did opt to wear my own clothes. so that's a plus. They didn't put the alarm on the bed but did REITERATE, "Call, do not fall!" 

Uh oh, ER

Well... it's not terribly crowded in here but me thinks it's going to be a long night. The first sign that it would be a long night? No parking spaces. Oh yeah, I'm at Capital Regional Medical Center. The second sign was the line OUT to the door, when I try to enter. But I waited. I signed in. Took my mask. And I waited.

The Log: 

• I got here around 645pm, Wednesday, January 15. Checked in!
• Around 815ish, they called me back for Triage. They sent me back into the lobby because, although I had notes to be admitted, the doctor hadn't accepted me as a patient. 
• 845 I was called back into the ER to be given an IV. It's time to start the fluids and steroids. 
• There are NO beds available in the main hospital so to kick this process off, we're going to hook you up, put you in a room and keep it moving. They didn't say that but that's what's happening. 

The door

The waiting room

• 10pm, i'm here here. In the ER. In a room with *counts* 6 other patients. Some were also hooked to an IV. Some were just waiting. Because, well, they're being admitted and got nowhere to go. 

• Around 1am, we're getting hungry. Well, I'd been snacking (sneakily pulling grapes out of my bag) but everyone in, especially those that have been here for HOURS are hungry. So we' started asking for food. 
• There were only two of us left at that point
• At 2am, we got a sandwich, chips and juice. 

• 3am they came in to tell me they're moving me. 
• I was the last one at this point. 
• But by moving me, they meant, to the hall way. on a stretcher. 
• I'm tired. I can't sleep or at least I don't want to go to sleep. But i hadn't been asleep since 730am so I'm just going to lay here and wa.....zzzzzz

• I rolled over around 4am, to use the potty. It was right across the hall from me. A nice looking chocolate male nurse, lol, unhooked me so I could go. When I came back to the bed/stretcher he came back to tell me he was taking me a room. I HAD A ROOM!!!  
• And I'm excited to know it's on the 4th floor. The same floor I was on back in April the last time I was here. I enjoyed the nursing staff on that floor. 

It's not the best plan but it is a plan

At this point (It's that time of the season) there are no beds at the hospital so we can't directly Admit you. You can go through the Emergency Room with a note that you are to be admitted and they will work you in. << Paraphrased

Not the most ideal situation BUT at this point it's what I've got to do. It can't be that bad. I'm packing up my things. I've got the boys handled and I'm ready to roll. 

Eat the cake, Anna Mae

As of right now, they're still working with the hospital to get me in. BUT, at this point, (Tuesday), for a process that'll take about 5 days, I can't do inpatient anymore because I can't go into the weekend. "so your only other option is to take the (cake) pills." 

NO Keep trying, please. thanks. 

What Can I Do For You?

That's what the neurologist asked me. "you read my file right? you read the notes on why i'm here, right? I just want to make sure we're on the same page before I start telling you this."  The room they put me sort of had me worried. Are we doing nerve tests? 

I told him what's happening and he agreed that we need to get a steroid treatment started. Pills. Outpatient. Inpatient. 

I opted for the Inpatient process. In my past experiences, I've been deemed a fall risk. My potassium has fluctuated and my blood pressure has gone up - all while taking steroids. These are not things I feel comfortable (or able to) monitoring at home. They're going to work with the hospital to get me admitted. We're a go! 

Only issue... I have an appointment at Mayo on Thursday. If we get this worked out today, maaaaaaaaaaaybe i can still make it? Maybe lol

Go To The ER

I haven't been able to get into a local facility to have the infusion done. I did, however, have Mayo send my PCP the information regarding the "need to have the infusion" so they could just rewrite it for me to go somewhere locally. After a few conversations he told me to do to the ER. He, being my PCP. It's a lot of medication to take in a pill and I should be monitored (i'm paraphrasing). 

Me being of sound mind and [most of my] body will pump the brakes on that as an option. You see, the last time I went to the hospital with a flare, they sent me back home. And it doesn't look like any physician is sending me there with any type of documentation. I don't presume someone in the ER is going to just 'give me steroids' blindly. So, I'll wait until Monday to see the local neurologist. 

I Can't Feel My Face...

...ok not really but I can't feel my toes. As a matter of fact, my toes, feet and legs are starting to lose sensation. AGAIN! It started on New Years night. I thought it was just the socks that I had on, my toes felt weird. So I'm thinking the footie sock things are too tight, or something. The same feeling, the next night. Finally, this morning I'm thinking to myself, "OH NO, It's happening again." So I call the nurse at Mayo and my local doctor to let them know what's up. We've got to get something worked out. 

I already have a follow-up appointment scheduled for January 16 at Mayo but I don't want to wait that long. I was able to get in with the local  doctor on Monday. Still 'too' long but we'll see. 

After talking with the Mayo nurse/doctor, we agreed that I need to begin a steroid treatment. I've got option. Pills (a LOT of them), Outpatient Infusion (Jax or Tally) or Inpatient (Jax or Tally). I'd rather not go back to Jacksonville because it's a 3-5 process and I'd have to bring the kid(s) or leave them AND foot the bill for a hotel. So I'm going to check on the outpatient option locally. Oh to my surprise, it would be "out of network" for my insurance. Not a terrible thing. BUT, after further discussion I'd also need a 'referral' from a doctor that's authorized, locally. So, I call my PCP. He can do it. I think. :-)  

Eyes Checked?... Check!

Yep, I've seen the Ophthalmologist. We got in there and got out. I didn't do all of the things that I THOUGHT I would do, with a Gilenya test but maybe that's because I'm not on the medication right now and he just needs to get a baseline of what my eyes look like. And basically, "Reliability was good. Findings included normal observations."

He did note, which I thought was pretty cool, that I have an "Aberrant regeneration of the oculomoter nerve" on the right side of my face. That's the same side I had Bells Palsy on (read about my journey here). 

Aberrant regeneration of cranial nerve III, otherwise known as oculomotor synkinesis, is an uncommon but well-described phenomenon most frequently resulting from trauma, tumors, and aneurysms. Its appearance usually follows an oculomotor palsy, but it can also occur primarily without any preceding nerve dysfunction. 

When I close my eyes, there's a slight pull on the corner of my mouth. I know it. I was surprised he could so it. It's more pronounced when i'm tired.