I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Monday, December 31, 2012

2012, Good Riddance. 2013, I'm coming after you.

I can't believe New Years Eve is finally here. Whereas many years seem to fly by, this one has dragged relentlessly. In fact, the last two years have felt like ten. Hard to believe, but I have been blogging for over ten years now, and I have made and assessed a list of goals (resolutions, if you wish to call them that) every NYE. Facing one of the most difficult and emotional Decembers of my life, I considered bypassing the tradition. I debated on it for days, and decided that the only way I can move forward into a new year is to, for lack of a better phrase, "keep calm and carry on".

So here I am to assess my 2012 goals. I know it will be somewhat painful, but worth reviewing so that I can effectively create new goals for 2013. And away we go...

Assessment - 2012 Goals:

1. Wrap up my time at MGCCC and successfully (FINALLY, PLEASE) move on to university.

- Wrapped up MGCCC on the President's List, but was forced to drop out right after I applied to university, due to having to file for Social Security.

2. Publish my first eBook.

- It isn't finished but it IS in progress.

3. Return to teaching and working, God willing.

- Nope. Devastated.

4. Complete all art, craft, and charity projects currently pending or in progress.

- Hahaha...no. Not even close.

5. Become more organized in my home and daily life.

- HAHAHAHAHA. Ok seriously, I am working on this and I have made great progress, but it is taking time. It has been a rough year on the homefront, needless to say.

6. If I start something...no matter what it is...finish it!

- I was sporadically successful, but I still have unfinished projects in progress. They WILL be completed.

And now, my 2013 Goals:

1. Scoff all you want at me for following the crowd, but I need to lose weight. I have gained too much, and while I don't qualify as "obese" yet, the 15lbs I have gained is adversely affecting my health. I must find a way to put a stop to the gaining and take off the extra pounds in spite of not being able to exercise.

2. Overhaul my computer, including but not limited to better organization of all files and folders. This is already in progress, but it's going to be quite a task.

3. Sort through all belongings and get rid of anything not needed or used regularly. I have too much trouble letting go of worthless little things. No, I do not belong on the TV show "Hoarders"...LOL...but I do need to improve upon this.

4. Exhaust all possibilities with the government concerning SSI, college, etc. If they refuse to allow me to finish my degrees, regroup and seek counsel in figuring out a new plan for survival.

5. Utilize the textbooks, DVDs, and other tutorials I have obtained over the past year.

6. Complete, or at least put a massive dent in, all unfinished art and writing projects.

And as always, I have four goals that I call "Mainstays", because they are the same every year:

7. No-Brainer of the century - don't croak! Ha! I have to get this condition under control somehow.

8. Stay involved in one or more charities. It gives me a reason to live.

9. Read more, write more, and learn more. Will elaborate on this later.

10. Be a good friend/relative, and strive to improve myself every day. I need to spend less time on people who don't give a damn about me, and more time on people who do.

I will hold myself accountable, and blog about some of these goals throughout the year. My list isn't terribly exciting...it rarely is. I have to choose my battles carefully. None of them are easy, but they are practical, possible, and worth the effort.

I'm trying my best to press on and make the coming year better than the last. To all of my readers out there, have a safe, productive, healthy, and happy 2013.

Let's do this.

Sunday, December 23, 2012

Acceptance and Giving Up

I am trying to cope with life as best as I can, but I think sometimes I have to realize that I'm human and I'm not as strong as I want to be. I have days when I put on a smile and make lemonade with the lemons I've been given, and I have days when I'm sick and tired of the freaking lemonade, and I grieve for the life that I have lost to this disease. It's hard to have hope when the future looks so dim. Owned by the government and relying on other people to provide my basic necessities is not living. It is merely existing...nothing more.

I had plans like anybody else. College was killing me but I was killing it in return, and I had no intention of quitting. I couldn't wait to get my Masters so I could teach and counsel, even if it was only possible via internet while propped up on pillows. I would have been satisfied with that (I think), and I would have been one kick-ass online instructor. I also planned to provide therapeutic art in my community free of charge in my spare time. I had a solid goal toward the only things I've ever strove for...independence, and making a difference. I wanted a tiny house in a town that I don't hate, and once stable and established, I wanted to apply for foster parenting. I have said since I was a little child myself that I would be one of "those moms" whether I had my own children or husband or not, and I meant it. But that's gone now. All of it...everything I've ever wanted has been ripped out of my hands, as if I'm not worthy of achieving it. I'm not okay with that. I am unfathomably angry.

I don't know anyone who has ever wanted to be more independent. While I don't take the abilities I have for granted, it's impossible to ignore the fact that this is an unfair world that operates on survival of the fittest, and I am not one of those people. So what happens to me? Exist day in and day out until I die in poverty? Forced to live being watched or controlled by other people, who may or may not resent me, for the rest of my life?

Unacceptable. That's what this is. It doesn't matter how much lemonade I make, how positive I think or speak, or how much I pray for my sins to be forgiven in hopes of being good enough to get somewhere in life...that doesn't change reality. I talked to someone tonight who insisted that everything bad that happens to us is a demon. If you're sick, you have a demon. If you're born with abnormalities by the world's standards, you have a demon, and somebody did something wrong to make it happen. You're cursed.

But isn't a holier-than-thou individual proclaiming that you're cursed, a curse in itself? I'm not a Bible-thumper, but I am firm in my beliefs. I know where I'm going when I die, and why I'm going there. I'm a believer, but I can't bring myself to believe that any person has the right to say someone else is possessed by the devil because they're sick - to say that a kid with Epilepsy needs a demon cast out, or a stroke victim must have done something to offend God, or a Muscular Dystrophy patient just doesn't have enough faith to be "normal". The very notion seems, in its own way, sick. And I don't accept it.

I've also talked with people who think I shouldn't be allowed to be independent. They think I should have to live my life under someone else's thumb, even if that means an unhappy home or a facility of some kind. Never mind that I'm only in my mid 30's, intelligent, and could survive on my own if I had the resources to do so. Tough luck. I'm crippled, so I should have to accept being imprisoned for the rest of my useless life, controlled by the fears and convenience of others.

I don't accept it. I don't accept any of it, and I never will.

To those who say this is the existence I should accept...to those who choose to ignore the facts as well as the possibilities...to those who disregard my full potential because I have a physical disability...to those who claim that I'm cursed...to those who think I'm not good enough, strong enough, or worth it...to those who believe I'm done for and have spinelessly written me off...to those who have given up on me, and expect me to do the same...I suggest you get the hell out of my way.

I don't give up.

Saturday, December 15, 2012

God save us. You're the only one who can.

I haven't turned on the TV or radio, and I'm not clicking on any articles. But I know what has happened. It's all over everybody's statuses, tweets, and in the headlines, but for the sake of my health I am keeping myself away from images and horrific details. Stress and grief are dangerous HKPP triggers, due to adrenaline release, so I have no choice but to stay calm even though what I really want to do is cry hard and beat the hell out of something.

I can't believe I exist on a planet where some innocent children are born and raised in love while others are traumatized and brutally murdered. It is beyond my feeble mind to grasp that this is life as we know it. This is not a reality that I can accept. This is not a world I want to live in.

What I would give for humanity to be more transparent, so we could see when someone has evil intentions, and rid the world of them before they destroy the lives of others. If only we could know, so we could protect our precious loved ones from unspeakable acts such as these.

Lord, be near.

Tuesday, December 11, 2012


I am utterly devastated to learn that my sweet friend Alexander has passed away.

He had Periodic Paralysis, and we had many conversations via Facebook private message concerning our condition. He picked on me about my blog rants, and translated my blog and Yahoo article for his friends and family in Ukraine. I even gave him some input on his little girl's English homework one day, and I was honored to do so. Most of the time we would just check in and ask about how each other's week was going, health-wise. We understood each other perfectly, in spite of our slight language barrier.

Like most of us with Periodic Paralysis, he had been through the wringer where medical care was concerned, being mistreated over the years and not taken seriously. Even with a family history of close relatives dying prematurely, he had so much trouble finding a doctor who would listen and treat him properly. He told me that doctors kept telling him it was all in his head, because they had no knowledge of the condition.

Story of my life. I related to Alexander so well...his story and mine were almost parallel.

Many of us in the online support groups did our best to encourage him through the battle. I've been told that he died in the hospital after an episode that affected his breathing. It sounds similar to the episode I had in June, when I had to wait in the ER to be seen, and debate with the hospital staff for days to be treated correctly.

My heart is crushed for him and his family. Alexander was only 31 years old, married with two young children. I will never understand. Why him? He was a devoted husband and father who had so much to live for. He started a mission to educate people in his region about this disease, even finding others with Periodic Paralysis and trying to help them seek treatment in the midst of his own challenges.

I simply cannot wrap my brain around this loss. Why him? Why not me?

It makes no sense whatsoever. It is unfair.  It makes me angry.

I will never understand. I will never stop asking why.

Thursday, December 6, 2012

Choosing Battles

Credit: CorgiAddict.com
This is pretty much how things are going lately.

My body doesn't seem to know which way is up anymore. Even my uncle, whom I share a house with but never speaks of my condition, finally chimed in and said "You're not functioning."

No kidding. Thanks for letting me know.

I manage to get a little bit done most days, but it usually involves something small. As most with systemic disease know all too well, I have to choose my battles. I can wash my hair, or I can load the dishwasher. I can prepare a semi-homemade meal, or I can struggle through a load of laundry. I don't take these things for granted whatsoever. Not a one. I find myself taking note of every little finished task on my to-do list and calling it a win. I can't help but be sad at times, though, that I consider taking a shower and putting on clothes an accomplishment. Who does that? Apparently, I do. Perhaps I'm not the only one.

I'd be lying like a dog (pun absolutely intended) if I said my treatment was going terribly well. It's not. My body is frustrated and it's making that known every minute of every day. I'm in horrendous pain from head to toe with no relief. I seem to be entering a state of acidosis thanks to acetazolamide, which I still have not successfully titrated to the amount that the doc wants me on. I pray to God for mercy that I don't start passing stones again, and I can't get in any position and be comfortable enough to rest. I literally do not sleep until my body crashes, whenever that may be. It's usually sometime in the morning or afternoon for three or four hours, and I'm usually in the middle of something. I can be in mid-sentence typing on my laptop in bed, and suddenly I wake up later with my hand still in position on the keyboard, partially paralyzed. I wonder sometimes how long I can continue existing like this. I'm trying so hard to function, but I am exhausted in every possible way.

I do what I can to distract myself. I'm working on an inspirational eBook, small craft projects when my arms and hands allow it, and spend a lot of time on Twitter and Facebook. I am grateful to those who put up with my ranting, raving, and rambling on social media. It keeps me sane.

I'm supposed to be heading to Louisiana today for a relative's wedding, but I am physically and financially unable to make the trip. I'm pretty upset about it. No matter how long I've lived with this disease, I can't get used to the fact that I don't have the same privileges as the rest of my family and friends. They can go and do what they want or need. I struggle with not being granted such normalcy.

I refuse to give up on having a life again, and I count my blessings in spite of this prison.

Monday, November 19, 2012

Update...From A Big Chicken

The Big Chicken!!! Located in Marietta, GA

Why, you ask? I thought it was appropriate, because I am one. After the nightmarish side effects that nearly landed me in the ER overnight last Tuesday/Wednesday, the doc and I agreed to cut my dosage of acetazolamide in half. Except I was too big of a chicken to do that, so I cut it in quarters instead. I went from 500mg a day to 125mg a day, and now I am going to slowly work my way back up to 500 if my body adjusts to the side effects. I have a nagging headache and I'm still dizzy, but not as bad as I was the other night by any means. I am trying my best to put on my big girl panties and deal with it.

I am encouraged that my muscles have not gotten worse. I feel it's a possibility that I am finally on the right track with treatment. I do have to make sure I stay on top of my med schedule...especially the potassium...but as long as I do that, I usually have several hours a day where I can function with the assistance of crutches or a walker. I still crash every day over something...usually muscle activity, weather, or sleep/lack of sleep, but I have to give the acetazolamide time to do its thing. Hurry up and wait is the name of the game, as it so often is.

I thought this might be a good time to list all of the meds and supplements I am on. Each one will be hyperlinked with more information.

acetazolamide (DIAMOX) - titrating from 125mg to 500mg a day, if I can manage the side effects
potassium bicarb/citrate (EFFER-K) 25mEq PRN - up to 3 a day
B12 5000mcg - the Wiki article says B-12 supplements aren't necessary for those who experience low bioavailability due to potassium intake. This article is why I disagree. I think all who take high doses of potassium should seriously consider a reliable B-12 supplement.
Omega Oil 1300mg
Vitamin D 50,000 IU (weekly)

I'm so tired of pills. Words cannot express. Gotta do what I gotta do, right? Quality of life is the goal...always has been and always will be. Keeping my eye on the prize.

Wednesday, November 14, 2012

HKPP Diamox/Acetazolamide Treatment: Rough Start

I am so grateful for the Hypokalemic Periodic Paralysis support groups on Facebook and the email Listserv. They have truly been a life-saver. I spent so many years alone with this disease, being disregarded, but now I have a group of dozens around the world going through this battle with me. There are a couple of physicians who specialize in Periodic Paralysis running the Listserv, and I have received a wealth of information from them as well. We are all learning from each other every day, and I have no doubt that I'd be a dead woman if not for finding this level of support. Thanks will never be enough.

I started on acetazolamide, as I mentioned a couple days ago, and the last 36 hour span has been a bit of a nightmare. My muscles have not declined...I want to make that clear. In fact, I've had moments where I felt for a minute that they were a tiny bit less heavy than usual, which is encouraging.

However, the side effects from the drug have been nothing short of brutal. I felt like I had been stabbed in the head...it was one of the worst migraines I've ever had. The nausea and dizziness were equally troublesome. I pulled a muscle in my back grabbing hold of the kitchen counter to keep from falling. I almost never cry over my symptoms, but tears were shed and I nearly had to ask to go to the ER overnight.

In talking with quite a few patients about it, everyone told me the exact same thing: my body was being ransacked by this drug...that I was starting on too high of a dosage. They said I should have started on a smaller dose and slowly worked my way up to the intended dosage over a period of weeks. They suggested I call my doctor, so I spoke with his nurse this morning and told her what was happening. I received a call back from Dr. F, and he agreed that I should cut the dosage in half and slowly work my way back up. I think he is a bit frustrated with me, or with the situation, but he seemed encouraged that my muscles were not doing worse in spite of the horrible side effects. I'm so grateful to Dr. F for not giving up on me. He is truly one of the best doctors I've ever had.

So in summary:

Acetazolamide 250mg twice a day made me feel like I was dying, bringing me to the conclusion that 500mg a day is not a good dosage to start with. Doc agreed that I should break the pills in half and take 125mg twice a day for 2 or 3 weeks. I'm supposed to call him with an update, then we will decide whether or not to up it to 500mg again.

I'm still on all of my other medications in addition to this. I will post a separate blog entry with the entire list, and comments will be open on the HKPP blog if anyone has a question.

I'm off to start the new dosage. Wish me luck...

Tuesday, November 13, 2012

Starting Acetazolamide

My bedside emergency station:
a couple of types of potassium, coconut water, almonds, pistachios, and lots of water

I'm beginning Diamox for the first time. It's very risky, as those with HKPP are aware, with only 46-50% of patients reporting improvement. Half the patients I've spoken to personally have said they are doing much better on it. The other half said they saw a decline in the form of Hypokalemic episodes or acidosis with kidney stones. God knows I don't need any of the above (I believe 40 stones is enough in one lifetime, thank you), so here's hoping and praying that I turn out to be one of the lucky ones.

I'll keep you posted here and on the HKPP blog.

Wednesday, November 7, 2012

November Consult in Jackson

I went to see my Nephrologist/Internal Medicine specialist yesterday at University of Mississippi Medical Center in Jackson. Dr. Fulop is a gem, I consider myself very lucky to have him in my corner.

He admits to being baffled by my condition, but we had a laugh about it and it made me grateful that he hasn't given up on me in spite of not seeing the improvement we had hoped for. It's funny how I always go in there wanting to crawl into a corner and cry, but I leave feeling better even though things haven't improved. He told me he believes in his heart that I will be well again, and I appreciate that. I've been very down about my condition, to say the least, and it helps to know that one of my doctors has faith in my recovery.

I will be starting a trial of Diamox in addition to all the other meds I'm on. This drug works for some patients, but makes things worse for others. Worse is dangerous, but of course I won't know which category I fall into unless I try it. He told me to promise that my family will supervise me and get me to the ER asap if I feel any kind of attack coming on (not that the ER will do anything for me). So, this is a risky move.

As far as I'm concerned, I have nothing to lose. I don't want to live like this, so if there is any chance of a treatment working in my favor, I'm going to give it a shot in spite of the risks.

Wish me luck, and I'll keep you posted.

Monday, November 5, 2012

The Painted Bra Art Project Results

I am so happy to report that my TARDIS bra was SOLD! Much appreciation to the person who purchased it! Thank you for supporting the Liz Hurley Breast Cancer Fund.

I look forward to next year's project!

Wednesday, October 24, 2012

The Painted Bra Art Project Auction & Juried Exhibit

I am SO excited to let you know that one of my art bras, TARDIS (A Doctor Who Tribute), was one of the bras chosen to be on display for The Painted Bra Art Project, and is being auctioned online for the Liz Hurley Breast Cancer Fund.

The auction opened this morning, and will run through November 4th. 100% of the purchase price benefits the charity, and bidding starts at $25.00.

I wish I could have attended the exhibit opening, but Huntsville is too far for me to travel in my condition. I am so very honored to be a part of this mission, however, and I look forward to doing so again next year!

Monday, October 22, 2012

Facebook Tip: How to stop comment notifications after you've commented on someone's post (pictures included)

Do ya hate when you comment on someone's post, and then receive a bunch of notifications of others' comments from that moment forward? It can get kinda annoying, right?

I finally figured out how to bring it to a halt!

Once you receive a comment notification following your comment, you can do the following:

Go to your notifications icon

Hover over the post you wish to unfollow

Click on the X

Choose Unfollow


You've unfollowed that post and will no longer receive notifications on it. Please tell me I'm not the only person who didn't know about this until recently. Glad I know now. My notifications are much less cluttered!

Wednesday, October 17, 2012

Social Security: Good News & Bad News

My recent visit to the Social Security office was successful. With detailed documentation by my doctors, and my visibly obvious condition, I was declared disabled effective immediately.

That's the good news.

The bad news...very bad news...is that they are only giving me $65 a month. This is based on my living arrangements and the assistance I have been getting from relatives for food, fuel, and medication, all of which is temporary. The most I would have received is $698, but their calculations brought me down to minimal support. Forced to quit all of my jobs and drop out of college thanks to a disease that I was born with, and I get a whopping sixty-five bucks a month to live on.

I don't even know what to say to that. Doomed? That's a pretty accurate word. I don't have a chance in hell of making it. Once my aunt and uncle step out of the picture as caregivers, I assume based on the lack of consideration I have received since this began over 20 years ago that I will have no other relatives to turn to.

So what's next? Only God knows. All I know is that I didn't ask for this BS. Never have and never will. I have fought people tooth and nail to be believed in order to receive the medical help I needed to keep this disease at bay for as long as possible. Yet, here I am not even 35 years old at what seems to be the near-end of the rope. I have battled my own body since childhood with one goal in mind - to be completely independent. I despise with every fiber of my being a life of relying on others to meet my needs, and at the present time there is no hope in sight of that ever changing. It is unjust and unacceptable.

That is all I have to say right now.

Wednesday, October 10, 2012

Low Sodium French Onion Soup Recipe


I put so much cheese on top
it sank and took the croutons with it.

Anybody who knows me knows that I am a soup fanatic. Last year, I was dead set on making a great low sodium Chili. This year, it's French Onion Soup. I am so hooked on the French Onion Soup at Atlanta Bread Company, I could eat it every single day. I decided to give it a shot myself, on a day when I could use my muscles well enough to pull off the task. It turned out well, so I thought I would share my recipe with you.

First let me say that this is ideal for people on a low sodium diet, and also for those who do not use wine in cooking. I would use wine if it didn't spoil so quickly, but since I don't drink it (triggers HKPP episodes), I don't buy it.

That said, here we go. Sorry there are no step by step photos...I couldn't find my camera at the time (edit note: I added the photo above more recently).


8-10 onions (yellow, Italian red, or both if you like)
6 cups low sodium beef broth
1/2 stick unsalted butter
Splash of balsamic vinegar
2 bay leaves
Pinch of salt (I use kosher)
Several grinds of fresh pepper
Gruyere or Swiss, shaved or grated
French bread, toasted (optional of course)

Slice onions in eighths and put in a large pot with a pinch of salt and the butter. Cover and cook very slowly, somewhere between 1 and 1.5 hours, until onions are caramelized.

Once onions are fully caramelized, deglaze with a splash of balsamic and slowly stir in broth, bay leaves, and pepper. Bring to a boil, then reduce to a medium simmer for 15-30 minutes, stirring occasionally. Add salt and pepper to taste.

Pour into individual bowls, shave Gruyere on top, and serve with toasted French bread. I like to put the toasted bread in the bowl, top with cheese, and broil in the oven.

Keep in mind that this is a lower-sodium recipe, and the taste will reflect that. By all means, use full-sodium broth or add salt as you wish. I think it's great, for what it's worth, and I hope you will too.

Thursday, September 20, 2012

Aunt Kelli got some news today!

My brother and sister-in-law are having
A GIRL!!!!!!!!!!!!!!!!

I am sooooooooooooooooooooo
excited to have a new niece on the way!


Monday, September 17, 2012

Periodic Paralysis/Muscular Dystrophy Consult

A couple weeks ago, I went back to University of Mississippi Medical Center in Jackson to meet with the Muscular Dystrophy team. It was a long day, as we didn't travel up there the night before like we usually do. We decided to leave before dawn the day of. I arrived at appointment time, but it was noon before I saw a doctor. Pretty common, really, as it is always packed. Being the only MDA clinic in the state, it's a wonder the crowd isn't larger.

While I was waiting, the MDA advocates came in the room and introduced themselves. The turnover is apparently fairly high, and this is the third set of reps I've met since first going there not even a year and a half ago. They were super, super nice and responded to my questions and concerns as best as they could in the amount of time we had. I had no voice (still don't), which made the day more challenging, but I managed a whisper that most folks could understand.

Dr. W came in and we discussed my recent hospital event. She documented everything I told her, and while she had no solution to my esophageal/vocal cord episodes, she did decide to increase my potassium intake yet again to see if I improved any. She also let me know that my Vitamin D was low, and prescribed 50,000 units a week. It's aggravating that I wasn't told about this six months ago. They waited until my bi-annual evaluation to say "oh by the way" instead of calling me in March with a script. Six months! Incredible drop of the ball there, but I didn't fuss at anybody.

That's pretty much it. No further tests or ideas for improvement, just documentation and experimentation with the meds.

Next trip to Jackson is in November, when I will meet with Dr. F, the Nephrologist/Internal Medicine specialist, for new labs and a consultation.

In other news, I was given a wonderful gift recently...a rolling walker. I am obviously not happy that I need such a thing in my 30's, but it has made life easier and for that I am grateful.

Her name is Indy. Because she's indigo. It's also a play on the Indy 500, because I'm a dork who often finds myself singing "Go Speed Racer" in an attempt to make light of the situation.

Whatever keeps the 'ol sanity intact, people.

Thursday, August 30, 2012

Hurricane Isaac Update

I'm fine at my house, but there are tornadoes and damage all around. Flooding is increasing and people are being rescued only minutes from me. This storm is a repeat of Hurricane Georges in 1998. It is sitting on us, dumping hard rain and spawning tornadoes constantly.

Thanks for continuing to pray for all affected.

Sunday, August 26, 2012

Hurricane Isaac & Yours Truly

As of this morning, Hurricane Isaac is expected to make a slight western turn and land right on me. See the letter "H" where it reaches the shoreline? I am directly, completely underneath it on the Grand Bay...the Mississippi/Alabama state line.

Here is another map. I'm underneath the number "2", which means they are saying it will be a Category 2 storm by the time it reaches me.

Things just got a little more serious. We can't afford a direct hit around here, that's for sure. I don't want anyone to have to deal with it, though. It's just one of those times when you don't want to go through it but certainly wouldn't wish it on somebody else. It could very well change track again tomorrow, but it's pretty much guaranteed at this point that I'll get some part of it, if not the eye.

We are making preparations around here, but I never evacuate. You can expect updates from me as long as I have a way to do so. I won't have internet most likely, but I may still be able to send texts from my phone. Feel free to follow me on Twitter @ugottafriend, which is where I will send most my updates. I will send texts to Facebook also, and possibly one here to the blog if I can figure it out.

It's going to be an interesting week. Thanks for any and all thoughts and prayers.

Thursday, August 23, 2012

On Weather Watch!

I am right smack in the middle of that cone, friends.

I'll keep ya posted!

Wednesday, July 25, 2012

Welcome To The Freak Show

Treatment as of July 2012

If they add anything else to my regimen, I'll have to buy a bigger dry-erase board.

From physical and mental to financial and time-wise, this is a challenge in every way. I feel like a juggling Guinea pig in a circus freak show (where you at, Ripley's?) who returns to her cage when the act is done. And this juggling Guinea pig has over a dozen acts a day, because the Ringmaster thinks she's qualified to handle the workload.

I am not qualified today. Or this week. Or this month. In fact, I'm not sure I'll ever be qualified for this.

Five years ago, I was an executive office administrator in the corporate world, working two jobs seven days a week and still managed to take online college classes and do charity work on the side. I took one pill a day and one shot every 11 weeks. Although I was still recovering from a severely separated knee caused by an incident with post-Katrina debris, I appeared to be in a mild sort of remission from the Periodic Paralysis. I didn't take it for granted. I seized every day as if it were my last. I did the best that I could.

The Periodic Paralysis reared its ugly head again, and I found myself flat on my back at the end of 2007. I had to resign from all jobs, and I was back to the drawing board. Weaker, but determined.

I didn't give up. I redefined my life. I threw caution to the wind and ran off to Florida, where I trained and certified to teach Bob Ross painting workshops. It was the craziest, riskiest, most spontaneous thing I've ever done. It was also the most incredible, amazing experience of my life. I returned to the Gulf Coast and began teaching for very little income, but I was happier than I had been in a long time. Summer of 2008 brought forth another spontaneous decision - going back to college full time. I dove in head first. Two weeks in, I landed in the hospital and had to have two kidney stone operations, missing almost a third of the semester. One of my teachers told me that I was an academic goner and suggested I withdraw.

But I didn't give up. I worked night and day to catch up, and I walked out of there on the Dean's List.

I continued teaching and going to college, and I helped launch a non-profit organization. My vision of getting my Fine Arts degree, bringing Art Therapy to the Gulf Coast, and eventually qualifying for foster parenting was finally becoming possible. Then my body began to weaken again, and I saw the inevitable. I went to doctor after doctor, and warned people about what was happening. Nobody took me seriously, even after I had to drop my Art courses because I was too weak to handle them.

But I didn't give up. I was devastated, but I dropped my Fine Arts major and continued college strictly online. I surprised myself by choosing Psychology, and kicked some unexpected, unprecedented butt. Perfect score. I found my academic niche, and ran with it. The new goal: Troy University's Psychology/Social Studies Post-Secondary Education Masters, with Bob Ross instruction and art therapy in the plans as volunteer work on the side. I had a real goal again, and was so excited.

April 9th, 2011, my world came crashing down when my body went into a paralytic episode following a painting workshop. I was mistreated by the hospital staff, resulting in multiple episodes and a drastic nosedive in my condition. I never fully recovered, my doctors have declared me permanently myopathic, and life has been a roller coaster from hell ever since.

At the horror of those around me, I refused to give up on college. I continued online, propped up on pillows in bed. I couldn't complete some of the assignments on time due to episodes and hospital visits, but my instructors made accommodations to extend deadlines, and I finished strong. When I was forced against my will to drop out of college this year, I left with a 4.0.

And now, my life is this. One pill a day has become an overwhelming list of crap that I have to write down to remember and borrow money from relatives and charities to pay for. Some days are better than others, but overall quality and all future plans are out the window. Some days, I can't swallow well enough to take all the meds. Some days, the side effects are worse than the symptoms. Some days, I take the meds and they flat out don't work. Some days, it would just be easier to give up, because I am absolutely not qualified for this.

But then I am reminded of everything that I once strove for. I am reminded of all of the people, young and old, that I have mentored and counseled to never stop hoping and never stop trying. I am reminded that I don't deserve to talk the talk if I'm not willing to walk the walk. I am reminded of who God is. I am reminded of who I am. I may not have much or be much, but one thing I know for sure - I don't give up.

I may not be qualified for this act, but with everything in me, I'm gonna keep juggling.

Tuesday, July 10, 2012

The Recent Hospital Stay (or, "the longest blog entry in history")...

This post may be TMI for non-HKPP subscribers.

I woke up at midnight, choking badly. I was having an episode and my esophagus was affected. I managed to cough. Acid came up and went back down. I was unable to swallow, however, and I feel like it went down the wrong track. I gagged and coughed for a long time. I could not gasp for air, but only take small, shallow breaths. I sat up all night, hoping to improve, but I didn't. I could not swallow, take deep breaths, or speak.

If you've been following for the past year, you know I have begun having serious episodes that involve my esophagus, and vocal cord paralysis is common for me now. But this time, things were not getting better and I had never been unable to swallow for such a long period of time. I emailed my aunt and uncle to let them know that I would probably have to go to the ER. It turns out their power was out, and they didn't get the email. I would have called, but I had no voice at all...couldn't even whisper. Sent a text message to my brother, and he called them for me.

In the meantime, I got dressed and printed out information from HKPP.org. I also printed out my personal medical information. Around 8am, my uncle took me to Providence Hospital ER. On the way there, I wrote out flash cards and notes for the staff. I had a ton of info...everything I could possibly think of.

When I arrived, the staff tried to force me to speak and wouldn't accept notes. I mouthed to them what was happening, and of course they had no clue what I was saying. So I sat in the ER and waited until it was my turn, still unable to speak, swallow, take full breaths, or walk. I'm not sure how long I waited before being seen...I decided not to be OCD in timing them. :)

The doc was nice, and he read my lips well. Thankfully, he took me seriously and ordered blood work and an X-ray to check my lungs. The X-ray didn't go well because I couldn't take a deep breath and hold it. We tried twice. The portion of my lungs that the tech could make out was clear, so the doc moved on to other tests and (I discovered later) began orders to admit me to the Intensive Care Unit for Hypokalemic crisis and potential Pulmonary Embolism (DVT).

While waiting for stat labs, I was given IV potassium in 1/2 saline. I told them that saline was dangerous and must be avoided, but if Mannitol was not available, diluted saline could be used as a last resort. So, that's what they did.

I warned the doc that my potassium level would be in normal range. I cannot stress this enough, friends, that someone with Familial Hypokalemic Periodic Paralysis has episodes in very normal range. The episodes are not caused by true Hypokalemia, but the actual downward shift...no matter how big or small. I made sure to explain this (the best way someone without a voice could) to the doc. He said "you know more about this than I do, so you tell me what to do". Can I keep him?

In spite of this understanding, the ICU rejected the doc's orders for admission due to the fact that my potassium level was in normal range. So, he ordered the next best thing - Telemetry.

I was admitted to the Telemetry floor, where I was placed in a very defective DVT-prevention bed (more on that later) and hooked up to a bunch of monitors, including a remote controlled monitor that I had to wear on my chest. I was almost immediately given a Lovenox injection in my stomach. They were not taking any chances of me dying of a blood clot, that's for sure. That shot might as well have been an ice pick. Heaven knows I have had a hundred+ needles in my life, so if I say it hurt, believe me...that freakin' thing HURT.

The problem, as those of you with HKPP will already guess, was the potassium. I received another IV that evening and into the night. They got it wrong at first, and were giving me normal saline. I had to ask them to switch to 1/2 saline or Mannitol...good thing I double-checked. They changed it out, but unfortunately, that did not help. Would you believe after two potassium IVs, my level did not raise at all? It did not raise...AT...ALL. Everyone, including me, was floored. They nixed all fluids until they could decide what to do.

One thing that slowly began to improve was my voice. I managed to start whispering again on day two.  I was still not able to take a deep breath, but I wasn't in visible distress and remained calm. They checked my oxygen, blood pressure, and heart rate periodically, and the numbers were acceptable.

I tried throughout the day to swallow, to no avail. The doc called in a gastro specialist, who ordered a swallow test. Unfortunately, it wasn't scheduled until the next day, so I was stuck in a defective hospital bed that continuously (incorrectly) inflated and deflated. I kid you not, it would deflate, then immediately inflate, then deflate again, then inflate again. It never stopped doing this. NEVER. I had also developed a migraine but was given no fluids, food, potassium...for 24 hours. Bad idea. Calm, perseverant Kelli became dehydrated, agitated Kelli. I sent a text to my aunt that I was going to hurt somebody. She sent my uncle up there. In the meantime, a sweet student nurse came in, saw me upset, sitting up in a chair, and asked what was wrong. I unloaded as much as a weak, whispering peacemaker from the deep south could. I told her I had been ignored for 24 hours and I was FED UP. No fluids, no potassium, no food, broken bed, nobody was listening and I was LEAVING. She was like oh no, don't leave. Please don't leave. I told her that if they did not take the information that I brought and follow HKPP protocol, I was going to start making phone calls. She said she would talk to the doctor ASAP and try to find out what was going on. I told her there was a serious failure to communicate and I was mad. She remained kind and calm, helped me shower and dress, and tucked me back into that [insert-swear-word-of-your-choice-here] bed. I still hate that stupid freaking bed. For the love of God almighty, I would have thrown that thing out of my 10th story window if I could have.

Day three was underway. The docs were discussing intubation, which was unfathomable to me (and against my Advance Directive, actually...more on that later). I was still being treated for DVT via Lovenox in the stomach. I may have been dying of Hypokalemic Periodic Paralysis right under their noses, but gosh darn it, my blood flow was stellar. :)

I was so over it, and wanted out of there. I asked for water so I could try to swallow again. I managed to get down the tiniest sips imaginable. I still couldn't produce a good swallow, but it was enough to allow trickles of water to go down the right pipe. Coughs and gagging galore, but it was finally happening at a snail's pace. I had the swallow test that evening. By then, I could swallow small-sized sips with accompanying coughs. Although labored and involved a bit of drama, I passed the test. So on the evening of day three, I started drinking a little bit of water, juice, and chicken broth. I was also able to speak with a loud whisper by then, but was still in pretty rough shape otherwise.

My potassium fell (still in normal range) and I began seeing a decline again by the time the staff changed shifts. I was on the edge of full-body paralysis, and getting very concerned because the pharmacy was still refusing to give me anymore potassium. A side note - I used to work in that very same pharmacy. I was in administration, in fact, but I chose not to ask to speak to the pharmacist. I probably should have, but I didn't want to cause trouble. I just wanted them to understand the condition and do the right thing.

Enter my hero - Nurse Cindy!!!

She was new. She read my chart and was enthusiastic and intrigued. She told me to tell her everything about the disease. We talked for a while, and I offered her the stack of papers that I brought. She is the ONLY nurse who accepted them. She took the info, read it, and Googled the condition further. I warned her and the other nurses that I was on the verge of another serious episode and something had to be done. She jumped on it...called the doc at home at 10:30pm and said "we can't let this happen". Since I could somewhat swallow again, the doc ordered the pharmacy to override their system and administer liquid potassium chloride as well as slow KCl. I was given 60 mEq at 11pm and another 40 mEq at 1am. This was repeated in the morning for a total of 200 mEq. I felt like death, people. It was rough.

But it worked. Day four, labs were drawn and my potassium level was 5.1, which was the goal. I could speak a little better, I could breathe, and I could swallow normally again. PRAISE THE LORD AND PASS THE BACON!

I ate every bit of the horrible breakfast I was given, drank more juice than I had consumed in at least two years, and resumed home medications. The doc canceled all further tests and discharged me, although I was given yet another Lovenox injection on the way out. Relentless, blood-thinning fiends.

I could not thank Cindy enough. I don't know what would have happened to me if not for her. The student nurse arrived later, helped me shower and dress again, and we talked for a while. I thanked her for being fabulous. She thought I was funny but I was dead serious. She handled me better than anyone else there.

I appreciated being able to watch TV, because it retained what little bit of sanity I had left. Needless to say, Food Network kept me company while I was going through this horrendous ordeal.

Funniest moment of the week - the bed of EPIC FAIL. It finally crapped out on me in the middle of the night and deflated completely. Imagine me butt-first in a sink hole, trying to reach the call button, and calmly asking for someone to come rescue me. We all chuckled as it took two and a half people to pull me out. I say two and half because one person was half dealing with the bed and half dealing with me, so it makes sense in my stupid mind.

My tummy still needs kisses to this day. Those Lovenox injections resulted in some impressive bruises.

Not one person in that hospital acknowledged the emergency medical bracelet I was wearing the entire time I was there. Sigh.

I am so grateful for everyone's thoughts and prayers on Facebook. Believe me, I do not take this for granted, and I never will. Thank you for loving me.

Tuesday, July 3, 2012

Wonderful, wonderful news...

I posted this status on Facebook on May 27th. It was 4:30 in the morning, and I couldn't get rid of a gut feeling that my brother and sister-in-law were expecting their first child. Weird, I realize, but it was a strong feeling. Hadn't seen them since last year (they live in another state), so there was no indication by glowing looks or out of the ordinary actions.

As it turns out...

I WAS RIGHT!!!!!!!!!!!!!!!

I am so excited for my brother John and his wife Kayla!
They are the best, and they will be amazing parents.
I can't wait to be an Aunt again!!!

Thursday, June 28, 2012

Hey Look, A Spinning Head

That would be mine. I have so much to write about, but I'm overwhelmed at the moment and I'm having a hard time focusing on anything that involves something other than laying in bed trying to breathe/sleep normally.

I am doing better. This week has been fairly functional since upping my B-12 and prescription potassium. I'm having to take more than prescribed just to be able to use my limbs, and I will continue to do so until I run out. My doctors in Jackson have not returned my calls concerning my hospital stay and the need for more potassium, so I've had no choice but to raise the dose myself. It's working. Not anywhere near where I need it to, but at least I can walk to the other side of the house, eat somewhat regularly, and drive short distances without having an episode. I am still very weak and walk with assistance of a cane or crutches, but that beats the heck out of having to use the wheelchair, or needing relatives to hang on to me. Wow. Putting it in that perspective makes all the difference. My uncle said something last month that really got me thinking. We were at my brother's graduation ceremony, me in a wheelchair, and I brought up the fact that the last time I was on that street, I was walking in the March of Dimes March For Babies. It was only a few years ago when I participated and completed the 2.75 mile walk. Thought I was going to die for a week afterwards, mind you, but I did it. My uncle said "You're lucky you were able to do THAT much." I often brush off his snarky comments, but that one has stayed with me. I suppose that's the perspective I should have, eh? To be glad that I could walk for a little while? I admit I have mixed feelings, but I get the point and I don't take that window of time for granted whatsoever. I am truly thankful.

I'm also weary, but in spite of that, I seem to be coping a little better now that I've increased the potassium and B-12. As I said in the beginning of this post, I am still having trouble completing basic tasks, but I am making an effort to regroup and tackle one goal at a time. Anyone who knows me knows I'm an overachiever. I try until I crash and burn, but I refuse to stop trying.

I visited with my mom the other day, and had a bit of a breakthrough with her. She made it known that she does care that I'm sick, but doesn't want to ask questions or know much about it. She did say that she's glad I've found a support group, and seemed somewhat happy for me that I had a published article about it. She also agreed to write Social Security and tell them that she will not be my caregiver. That should help them to understand how desperately I need assistance. She is very detached from the reality of this situation, still, but at least she's not being harsh and unreasonable anymore and for that I am grateful. It is a step in the right direction.

I will wait and write about my recent episode and hospital stay in a separate entry. It will no doubt be long-winded. It was a pretty scary four days. I'm trying to bounce back but even my stomach is still sore from the lovenox shots they gave me every day for DVT. Sheesh. Anyway, I can no longer keep my eyes open so more on that and other stuff later. Nighty night.

Friday, June 22, 2012

Mario Marathon 5

This awesome group of gamers plays Mario non-stop for days to raise funds for children's hospitals through Child's Play Charity. I always make a point to watch and promote every year. I love these guys!

Check 'em out and show some support! It's for the kids!

Friday, June 15, 2012

Hospital stay

I'm home after spending four days in the hospital. I had an episode that affected my upper body, including my esophagus and vocal cords. I could not speak, take deep breaths, or swallow at all. It was very stressful, and I'm so thankful that I have finally recovered from it. I will share all the details later. For now, I need sleep.

Saturday, June 9, 2012

SSA Update

I met with SSA today concerning my denial and how to proceed. The lady was incredibly kind and encouraging, and we were able to start over with the application, but keep the same disability report that I filed out previously. It turns out that I am below the minimum required work credits and therefore cannot receive disability payments, but I should have no problem receiving SSI and Medicaid. I'm now waiting for them to proceed with obtaining my medical records. I will talk with my doc offices next week to make sure they get the files to SSA as soon as possible.

As of right now, an attorney is not involved. I will contact one only when all other options are gone. So I'm playing the waiting game again.

This is a stressful time. The relative that I live with is terminally ill, and once passed, this house will be sold. I have no idea what will happen to me. I can't take care of myself. I try not to worry about it, but it's hard. I don't have a dime to my name. I'm in more debt than I'll ever be able to pay. I have no assets but a cheapo car that needs work. Living strictly on charity...at the mercy of everyone.

I'm sad, but I'm trying to find grace in the moment. Hope is alive, although at times it seems to be in hiding.

Friday, May 25, 2012

Saturday, April 28, 2012

Recap, Retrospect, Regret, Rejoice, Rinse, Repeat...

My college career has ended.

But let me reminisce for a while if you don't mind. I have a lot to get out of my system.

My semester went out with a bang. Despite being online, it was very difficult physically. But academically, it ended strong thanks to my four instructors, who were accommodating of my hospital appointments and bouts of paralysis. They extended deadlines, let me make up tests that I missed, and I ended up passing with flying colors. I really owe my Algebra teacher especially, as she went far out of her way to make this happen. I am more grateful than I can express. Truly grateful.

I am still amazed that I was able to accomplish all of this from my bed. The ability to learn online, especially when one is too disabled to sit up at a desk on campus, is a tremendous gift. It gave me a reason to get up every day, and on days I couldn't, I laid on my side in bed and typed with one hand. You know what they say about life giving you lemons. I made lemonade, darn it. I made as much lemonade as I possibly could.

The little bit of time that I spent on campus over the past few years was very risky. Thank God nobody had to call an ambulance for me. It was close on several occasions. No one will ever know how difficult it was for me to be there. It got to the point where I didn't even have the strength to put pillowcases on the pillows I dragged into class each day. That's pretty pathetic, but I desperately did not want to give up on my dream of making it through that course. Hell or high water, I was going to make it or die trying. I meant it, and my stubbornness was probably (ok definitely) obvious. In spite of the fact that my instructor became frustrated (who wouldn't, I guess...I know I'm not easy when I'm in this condition), he extended grace to me throughout my attendance and I will always be thankful for that. Lord knows I had my moments of frustration as well, and made some mistakes in the social realm. I regret joining the art guild, and I also wish it had never been told that I was an instructor. Life would have been a little easier had I stayed quiet in my little corner, in my opinion...for me and others. I wanted so much to help and make a positive difference while I had the chance, but operated with anxiety and urgency because I knew my time was short. I've discovered that I'm not alone in how my brain works...seems like this is a common trait among the chronically ill. Nevertheless, those who are healthy don't "get it", so there will inevitably be annoyances and misunderstandings. I never intended to be a problem to anyone, and it hurts my heart to think that I might have been. Hindsight is hard to embrace, but I suppose there's a lesson in there somewhere. I wish everyone the best.

How happy I am to have survived the classes, though. I still cry if I think about it too hard. I've wanted to be an artist since kindergarten, and have said since high school that I would take the drawing and design classes at JC. Three attempts later, I finally did it, and no one can ever take that away from me.

When I became too ill to do anything else, I began taking online courses part time. Rocked History, as I always do, but Psychology...where did THAT come from? It came from the leftest left field in the history of left fields. It came from the parking lot behind the leftest left field. I had no idea I would love Psychology, much less kill it and want to pursue a degree. If somebody had told me four years ago that I would even be talked into taking the intro class, I would have laughed in their face. What an unexpected development, and I'm absolutely devastated that I cannot pursue that degree. I had a plan mapped out and everything - Psychology and American History Post-Secondary Education. I wanted to be an online college instructor. I wanted my Masters or maybe even my PhD. I could have revamped Art W/Heart and done mentoring and therapeutic art again on the side.

I had a plan. But apparently, it's not God's plan. At least not right now.

I'm being forced to give it up. I am too sick...and I have been urged to apply for Social Security. A college education is useless if I'm dead. They're right. I have to take care of my current situation, and that means getting on Disability, SSI, and Medicaid. Anyone who knows me or has followed my story for the past year knows I am 100% disabled. I am bed-bound most of the time. I have worked so hard to overcome this disease, but the reality is that I am losing the battle, and losing it badly.

Getting Social Security means no financial aid for college, even pursuing an online degree from the confines of my bed. They are not with "the times" so to speak, so I've been informed that my pursuit of a future is over. Disabled means just that, and I truly am. This disease is not going away...it is real and progressive, potentially deadly, and I am currently at my worst. I know my goals were far-fetched, but what can anyone expect from me? I am 34 years old. I don't have Mama and Daddy or a spouse taking care of me. When my aunts and uncles are gone, I have me. And what do I have? Absolutely nothing. Not a leg to stand on. It's just me. I am at the mercy of the government, probably for the rest of my life. It is the most helpless feeling on Earth. I don't have words for this. I am utterly broken beyond belief.

Of course I was going to try to get a degree and find an online job. What else could I do? What else WOULD I do? I don't want to be dependent on the government or anyone else. There is no hope in that. None. What's the point of living like that? Any responsible person would try their hardest to make it on their own, and that is what I did. I only give in by force, and I think I've proved that. Nobody can ever say that I didn't try. I've nearly dropped dead from trying.

No matter what happens to me, I don't regret trying.

Friday, April 27, 2012

It's Over.

I emailed my teachers last night to thank them for dragging me to the finish line. I missed my last Algebra exam due to being too ill to take it, but my instructor was able to make special accommodations due to my condition, and I was able to take the test at home at the end of the semester. It made all the difference in the world in my grade, and I am so grateful.

The ladies at the proctor center also have my sincere thanks for going above and beyond to help me, especially this school year. They rescheduled my proctored tests many times without saying a word. They let me use the employees only door because it's closer to the parking lot. Wednesday, they helped me in the door, brought me water, helped me out of my chair, and assisted me back out the door to my car. I appreciate everything that everyone has done to help me at MGCCC. I haven't take it for granted.

Will post grades, a recap, and some news soon. For now, sleep.

Wednesday, March 28, 2012

Pink Heart Funds

This week has been tremendously better than the last, and I'm very thankful. I am somewhat functional. I wasn't able to do anything on my birthday...it was a very rough day physically and for a few minutes I thought I might find myself in the emergency room. So glad I managed to avoid it. I did miss a very important Algebra exam, but my wonderful teacher offered to extend the deadline. I am a lucky dog.

Saturday was productive. I got dressed sometime that afternoon and drove down the road a bit, and as I started to sweat profusely in my car (help y'all, it's only March), I decided it was time to chop the mop.

So this...

...has gone bye-bye. It is now in a bag, and will be taken to Pink Heart Funds. I hope they will be able to use it to make a wig for someone who has cancer. The great thing about Pink Heart Funds is that they take any type of hair. It can be processed, gray, permed, doesn't matter as long as it's at least 8 inches. I was surprisingly able to donate around 10 inches, and my hair is still covering my neck.

Short hair is not really my thing. My mom and stepdad absolutely hate it, ha! But what a small sacrifice...a no-brainer as far as I'm concerned.

Anyway, if you've been interested in donating your hair and other cancer charities won't accept it, I hope you'll contact Pink Heart Funds. Great people with a great mission!

Tuesday, March 20, 2012


It has been very hard lately. Physically and otherwise. I guess anyone who has been paying attention is aware of that. Being debilitated is not only difficult on the body, but the soul as well. Life is one big emotional...well...roller coaster. Ha. As always, I named the blog right.

In looking at past entries, I've noticed that in one post, I said I was handling things pretty well and I wasn't depressed. That was true. The next post, I was not coping well at all. That was also true. The fact of the matter is that there are a lot of ups and downs. Days when I think "Ok, I can do this, I'll make it somehow", and days when I absolutely, positively cannot by any stretch of the imagination...do this.

I'm sure I'm far from alone on this road. I can't imagine anyone in this condition feeling any differently, although I realize that many people with systemic disease are in better shape than I am. I was one of those people just a few years ago. I was mostly functional. Working, making plans for the future, kicking butt and taking names in the corporate world. It was difficult, yes, but I was managing. Now, I'm hanging by a thread at times, lucky if I can stand up in the kitchen long enough to prepare a meal. Sometimes, I can't do that. I had to quit campus classes at the college because I'm unable to sit up in a chair long enough, unable to complete any piece of artwork I attempt, unable to do more than prop up on pillows in bed most of the day. I had to turn my job and my students away because I'm physically incapable of being there anymore. There are days when I can't lift my limbs enough to step into the bathtub and wash my hair. Is this the end of the rope? Because it sure seems like it.

I've filed out an application for Social Security Disability because I have no other options. I have zero income, living on charity...thank God for charity. But God help me, I'm at the complete mercy of others and it is a helpless way to live. Things are rough right now. This is not what I wanted my life to be. I had dreams and goals and plans just like everybody else. Amazing plans. I wanted to do great things. Had I been given a real chance, I could have done great things.

I'm angry. Broken. I feel cheated and defeated. Dragged around, beaten down, and left to die a senseless death from a worthless existence. No other way to say it, at least not without using a lot of ugly words. I'm not like this every day, but it is where I am sometimes. It is where I am today.

But I'm still breathing. And because I'm breathing, I'll never stop hoping. I'll never stop hoping for a better tomorrow...for a life worth living. I'll never stop trying to make it happen. It's all I can do. Hope is all there is. Hope is all I have.

Yet somehow, hope is all I need. I have to believe I am here, in this Hell on Earth, for a purpose. One that is bigger than what I can see, or hear, or feel. One that someday makes this entire journey...both good and bad...worth it.

Where there is life, there is hope. So I'll keep breathing, until I can't breathe anymore.

Wednesday, March 7, 2012

LONG week. Happy birthday Baby Jo, and my hospital update...

My precious niece, Layton Josephine, celebrated her first birthday this past weekend! I can't believe she's already one!!! Jo is such a baby doll, already walking, and so smart...love her so much!

Hooray that I was able to make the trip to Louisiana to spend Jo's birthday with her! I knew I was going to be there or die trying. I so want to be in this child's life and watch her grow up. There will come a day when I can't travel at all anymore, so I am going to do what I can for as long as I can. The trip there and back wasn't without its drama, but I managed and I'm super grateful.

I made it home a little before midnight Monday (the 6 hour trip ended up taking 10 hours...ugh), took a short nap, then had to turn around leave for the hospital in Jackson. Thankfully, my aunt and uncle were with me and did all the driving. They have been life-savers, literally, and I will never be able to thank them enough for all they have done and continue to do to help me find quality of life. I would surely be dead if they hadn't intervened. I'm at a loss for words beyond that.

My appointment Tuesday with the MDA Muscular Dystrophy Clinic went well. The new doctor I saw was very nice, asked a lot of questions, and we discussed several issues. I had a new series of blood tests, including a vitamin and mineral panel. B-12, Vitamin E, Copper, Folate, and Zinc were special concerns. I was also given a new script for emergency potassium to supplement my maintenance meds, and I spoke with the MDA concerning future medical equipment.

We had an awesome dinner at Julep, and stayed overnight.

Wednesday morning, I met with a team of doctors at UMMC to discuss my breathing and sleeping issues. Both docs were outstanding...thorough, respectful, and blunt in the nicest possible way. They both believe that I have sleep apnea in addition to the breathing problems that result from Periodic Paralysis. No oxygen has been prescribed by day (yet), but they urged me to proceed with testing so I can at least obtain a CPAP machine to use at night. Unfortunately, the testing is $2300 paid in full up front, and the CPAP is an additional God-only-knows how much. There is no financial aid or indigent care for this treatment at UMMC (or any other hospital that I know of), so I am at a stand-still until I figure out a way to make this happen. Other than that, I was prescribed yet another med. It will deal with my acid production, and I start it tomorrow morning.

Lord, I am so tired of pills. That's fifteen now, if anyone's counting. And to think, just a few years ago, I was only on one pill a day. ONE. If that doesn't put my situation into perspective, nothing will.

I'll keep you posted, and I will soon launch a blog that deals strictly with my battle against this disease. I greatly appreciate everyone's thoughts and prayers on Twitter and Facebook. I promise I don't take you for granted. Thanks for caring.