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. 

What Next?

The plan was/is, to begin the Gilenya after breastfeeding for 3 months. Statistics state that women relapse harder 3 weeks postpartum. That's around Dec 9. Sorta aligns with the eye appointment that I rescheduled. So, since I rescheduled that appointment I have to wait for that to happen, which is Jan 6. 

Wish me luck that I don't relapse.