Friday, September 23, 2011

Busy

Studying Art History...



Dealing with attack after attack, and trying to raise my potassium level...

(Orange flavor my butt. That mess is nasty.)


Finding old photos...

(I'm the one with the chicken legs and huge feet)


And really hoping I fit into that dress tomorrow. I never wear dresses, but my little brother is getting married!


Friday, September 16, 2011

Catching Up, Part Deux: Periodic Paralysis, Kidneys, & My Latest Doc Appointments

I am so far behind...I know. I'm going to give the summary here and spare you the long, rambling details.

I received no answers from the docs I saw in Mobile. They left me completely hanging...I still haven't received the return phone calls that I'm owed or the new appointment that I was promised and it has been two months. Lying here, my life wasting away, being completely ignored. Why yes, I am bitter. Thank you for noticing.

Anyway, I've had a couple of consults and tests with the MDA (that's Muscular Dystrophy Association, if you're new around here) and Nephrology clinics since then. The MDA physician, Dr. V, agreed that I have Familial HypoKPP. Unfortunately, he does not have any suggestions for me other than follow the diet and continue to take potassium. That's what I've been doing and it's no longer working, but he said that's all I can do. He doesn't want to do genetic testing since I am uninsured. I'm hoping to someday find a lab that is willing to follow [Periodic Paralysis International's genetic specialist] Dr. Lehman-Horn's protocol in sending blood to Germany for testing, but getting any lab that I've ever dealt with around here to get their OWN stuff correct is a task in itself. Dr. V said his hospital's lab is doomed to fail in getting it right and was not willing to order them to do it. At any rate, he said that I have chronic muscular dystrophy and my current situation may or may not be permanent. He advised that I pursue SS disability and Medicaid.

I also saw Nephrology. Dr. F is really something. He seemed truly upset by my condition, and was enthusiastic to help. He ordered several tests to check for metabolic and autoimmune diseases and to determine if my kidneys are wasting potassium. This week, I turned in two days worth of samples and I'm waiting on the results of that now. He reluctantly prescribed a drug, amiloride, but he is concerned what it will do to me and stressed that the results could be good or could be very bad. He really didn't want to do it because it is so risky, but I told him that I couldn't live like this and was willing to try anything. He gave me strict instructions on what to do while taking it and I have to report back to him via fax in a week with my potassium level.

I am hoping and praying this is my answer...I am in a bad place in life. I am very, very ill. I cannot take care of myself and I have no income. I honestly don't know what in the world is going to happen to me, but I'm doing my best to hang on to hope with all that I have.

This is the super short version of the past 3.5 months. You're welcome. :-)

And thank you for your thoughts and prayers.


Friday, September 9, 2011

MAJOR Catching Up!

I know, I know...I have a LOT of catching up to do. This is going to be in two parts, and I'll try not to ramble ten thousand miles long.

PARALYZED VOCAL CORDS...

My last bad attack of Hypokalemic Periodic Paralysis resulted in something that had never happened before - I lost my ability to speak. My throat was greatly affected by the attack, and apparently a vocal cord became paralyzed. It felt exactly like the rest of my muscles when they're paralyzed...bee stings and all. It was gone for SIX weeks. As of yesterday, it is finally starting to come back. For the record, my potassium level is higher than it has been in six weeks, so as far as I'm concerned, that further confirms the connection. Not to mention that, hello, I was there when it went away. I'm not an idiot. I know when a part of my body is weak and/or depolarized. I don't care if it's uncommon...this is ME we're talking about. If it's POSSIBLE, chances are it's going to happen to my stupid body. So I spent six weeks in silence, trying to make strangers understand that I couldn't speak but was otherwise fine. People tried sign language, people whispered (why?), and people yelled in an attempt to communicate with me regardless of the fact that I told them that I was NOT deaf. It was simultaneously the funniest and most frustrating experience I've had in a long time. Thank God my voice is finally making a comeback.






THE FOOT OF FAIL...

A light bulb shattered into billions of tiny shards in my bathroom. I swept, I mopped, I wore shoes, and a month later, went barefoot in the bathroom and voila...a ton of glass in my foot. The worst part about this is that I didn't know it happened...thanks paralysis...and a month AFTER the fact, my foot started to blow up and burn and itch until I realized what was going on. Mad as hell, I made an emergency doc appointment where I was butchered by none other than Dr. Butcher - go ahead, laugh. I did. I also yelled a lot (cut with no pain meds, thank you) and was aggressively treated for Staph, which only made the Periodic Paralysis drastically worse. It has been a rough ordeal...frustrating...and unfortunately only a couple pieces of glass have been removed from my foot. There are still quite a few pieces in it, but they are too small to handle. I've been told all I can do is wait for it to come out on its own. Ask me how thrilled I am. And by the way, I bought a rug for the bathroom floor.

The subject in question...skip if you can't stand foot pics:

Wrapped after being hacked, LOL...


A couple weeks after being hacked...the skin is peeling away in an attempt to reject the glass. If you look closely enough, you can see teeny tiny red specks where the glass is under the surface.

I actually decided not to share the really gross pic. You're welcome.


THE TRAUMATIZED TEETH...

In the same week, I began to have severe tooth pain. Wanna see me panic? Make my teeth feel like they're exploding. My stepbrother died from a tooth infection in 2008, so this did a number on me. I don't cry a lot, but I broke down over this. Already being ill, and having to tell my stepdad whose son died less than 3 years ago, and not having a dentist, and being utterly broke and unable to afford a dental appointment...I was not taking this well to say the least. I finally emailed (because I still couldn't speak, mind you) my stepdad's dentist and asked for an emergency appointment. They were super nice and took me the next day. I was able to be seen and it went better than expected, although a great deal of pain resulted from it. It turns out that I did not have a tooth infection, but several teeth are severely traumatized from the clinching and grinding that I do involuntarily due to TMJ Disorder. One of my teeth, the right lower canine, is so aggravated that it's slightly loose and causing the tremendous pain. In other news, I have a lot of very ugly sores from biting the insides of my mouth...lovely! I knew about those, obviously, but they were noted by the dentist and assistant as being really bad. It was also discovered that my roots are deformed, with some of them connected and wrapping around each other, contributing to my exceptionally small mouth. I was warned that if I ever had to have partials, major surgery would be required. Ouch. Not good. Migraines from hell and TMJ Disorder were discussed, and I was prescribed Flexeril. In conclusion, I managed to get through two dental appointments without crying or throwing up, so that is the good news. Dr. C adjusted my bite and impressions were made for a full arch splint that I will have to wear for the rest of my life. Sigh. It could have been worse. I'm in terrible pain, but grateful. And other than all of that drama, my teeth actually look quite well.


CHEEEEEEEEEEEEEEEEEESE!


My apologies. It's not easy bein' cheesy.


Catching Up, Part Deux coming soon.

Monday, September 5, 2011

Thanks Lee!

With the exception of tree limbs all over the yard, Lee was pretty undramatic at my homestead...until the power went out this morning, and has yet to be restored nearly 12 hours later. My crippled self is sitting at a wifi spot trying to decide how to go about saving the food in my freezer.

I'll be back when the power's on...whenever that may be!

Saturday, September 3, 2011

Lee

Can't sleep, so I figured I would check in and say hi. It hasn't been a good week, honestly, thus my semi-absence from blogging. As of right now, I'm trying to sit up and check news updates on Tropical Storm Lee, who is currently sitting on us here on the gulf coast. Wind speed isn't too bad, but nonetheless we are under multiple tornado warnings (meaning they exist, whereas a "watch" just means to beware of the possibility of them). Hopefully Lee will pick up the pace a little and get outta here, but NOAA is reporting that he is "meandering", which isn't a good thing. I've read that parts of the coast are already starting to flood, and the storm hasn't even officially made landfall yet. The feeder bands are sporadic, as feeder bands usually are, so it's on again, off again, on again, etc. It's gonna be a long Labor Day weekend.

I'll be back to share all things health and school in the next entry.