Saturday, December 31, 2011

A New Year Vlog



Vicki passed away a couple days ago. Just another reminder of how fragile life is. Please embrace it while you have the chance, and do what you can to make a positive difference in the world.

I am so grateful to have so many kind and wonderful friends. Even if most of you are from a distance, you truly matter. Thank you for loving me, and I wish you all a happy and wonderful 2012.

God bless,
Kelli

HAPPY NEW YEARS EVE! My 2011 Review and 2012 Goals...

Mercy, y'all. What a year it has been. Anyone who has been crazy kind enough to follow my blog in 2011 knows just how much my life transformed overnight nearly nine months ago. It has been a nightmare...the worst one I've ever known...but by the grace of God, I have survived it thus far.

I've gotten to the point where I no longer fully recover from my frequent paralytic attacks, and the MDA has given me no hope of doing so. It is impossible to accept this as my "new normal", so I continue to do what I can to learn about this disease and try to control and improve the symptoms. I am in my mid-30's. I can't give up, and I refuse to live in a prison of fear. There are days when I have no quality of life, but on the days I can function, I'm going to live with all that is in me.

Hard to believe it's the end of the year. In some ways, this year has dragged by (for the obvious reasons). In other ways, it's crazy to see that 2012 is upon us, ready or not. Every year, I give myself goals...resolutions, I suppose. And every New Years Eve, I review them and then make a new list. I'm a very serious "list" person, if you didn't know. Yep, I'm one of those.

That being said, it's time to review my 2011 goals! Drum roll, please...

1. Figure out what to do about my college degree, and make it happen.

I continued college and did very well considering my extreme decline in health. I am so happy I hung in there and didn't give up. I've completed 17 classes at MGCCC, 4 classes elsewhere, and have an overall 3.9 GPA.
I also decided on a new major, since I can no longer physically handle an Art degree. In 2012, I will move on to university where I will pursue Psychology and History. I'm more excited about this than I thought I would be...I really can't wait to dive into the curriculum!

2. Road trip out of state to visit family and meet my new niece due to arrive in March!

MISSION ACCOMPLISHED!!!


THERE IS NO ONE ON THIS EARTH MORE WONDERFUL AND PERFECT THAN BABY JO! I WISH SHE DIDN'T LIVE IN ANOTHER STATE...I MISS HER EVERY DAY!

3. Increase and become more organized in my teaching business.

This sadly came to a halt thanks to debilitating, life-threatening episodes of Periodic Paralysis. My life hasn't been the same since, but I hope and pray to return to some form of teaching in 2012.

4. Decrease my debt, whatever it takes.

Needless to say, this has been impossible as I have been ungainfully unemployed since April. I am surviving on the charity of family and friends, and I am eternally grateful for the help I have received. This has been a long road and there is no end in sight, but I am doing the best I can.

5. Put a dent in one of my manuscripts...article, short story, fiction, non-fiction...who cares! Just work on something!!!

I worked on a couple of new blogs (yet to be launched) and began work on my first eBook - IF I HAD A MILLION BUCKS. Further info on my eBook project can be found on that blog. I still have a cornucopia of manuscripts on the back burner, and I hope to be able to put a dent in at least one of them once I am finished with my current project.

6. Remain honest and aware, pray, and strive to improve myself each and every day.

Well, this goes without saying. It has been one of the worst years of my life. However, as long as I am breathing, I will strive to remain true to myself and others.


And now, my goals for 2012...wish me luck!

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

2. Publish my first eBook.

3. Return to teaching and working, God willing.

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

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

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

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

7. Reach/maintain my ideal weight and keep my health under control as much as possible. Easier said than done, but I will do my best.

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

9. Read more, write more, and learn more. This is thankfully inevitable, as I am in college!

10. Be a good friend/relative, and strive to improve myself every day.


May 2012 be a better, healthier, happier year for us all.


God bless,
Kelli

Thursday, December 29, 2011

Home from the ATL

Although I didn't accomplish nearly as much as I had hoped to, my road trip was successful. The HKPP acted up quite a bit and I am still recovering, but I am thankful that I made it to Marietta/Atlanta and back home in one piece. I'll post a ton of pics soon.

Hope everybody had a wonderful Christmas. I'll be blogging a good bit this week, so stay tuned if you wish.

Saturday, December 24, 2011

Merry Christmas, Happy Hanukkah, and all the rest

Whatever you celebrate, hope it's a great one.

As for me, I visited with my family tonight and had my uncle's awesome seafood gumbo, as is the Christmas Eve tradition. Tomorrow early morning, I set out on my first road trip since my serious episodes of Periodic Paralysis began in April. Prayers for safe travels appreciated, and I'll blog again soon (with pics)!

Until next time...enjoy!

Thursday, December 22, 2011

I Hate Cancer

I hate it so much.

My friend Vicki is dying.

She had previously fought and won.

Three weeks ago, a spot was found.

It is happening so fast.

She may not make it to Christmas.

I hate cancer.

I hate it.

Tuesday, December 20, 2011

Mock Mashed Potatoes

I've been trying to find a successful recipe for mock mashed potatoes since I can't have the real thing anymore. Thanks to some tips from Food Network enthusiasts on Facebook, I finally got it right!



Mock Mashed Potatoes:

Bag of frozen cauliflower (or fresh if you want)
Stick of butter
1/4 cup whipped cream cheese
8 oz light sour cream
Cheese of your choice. I use finely shredded cheddar jack and grated parm. I don't measure this...just play around with the recipe until it's as cheesy as you want it to be.
Handful of bacon bits (if desired)
Tsp minced garlic
Fresh cracked peppercorns to taste
Salt if desired, but I don't add any.

Steam the cauliflower in 1/2 stick butter until soft. Drain very well. Place in blender with cream cheese, sour cream, cheese, garlic, pepper, and remainder of butter and blend until smooth. I suggest using a stick blender or one with a "whip" mode, and I prefer it thick enough to not slide off the spoon. Pour into a microwavable container, add more cheese on top if you wish, add bacon bits, and reheat (the cheeses and sour cream cool it off quickly in the blender, so it has to be warmed back up).

Enjoy the cheesy goodness!

Saturday, December 17, 2011

If I Had A Million Bucks, the eBook update

Hey folks, thanks so much for all the charity suggestions. The eBook is going to take MUCH longer than I expected, as I have around 150 charities to research and contact. I'd like to say it will ready for publishing in January, but I would be surprised.

Stay tuned, though. It will be done. I look forward to making this free eBook my first publication (not counting all my blogs, of course). Thanks for your patience!

Thursday, December 8, 2011

Lost.


I found this little one in the yard, unable to move.

His eyes were scratched out and his legs were limp.

I walked up very close to him (but was careful not to let him touch me) and he tried to move but couldn't.

He started shaking, so I stood there and talked to him softly until he stopped.

He then leaned over and started playing with his tail, and my heart broke because I knew there wasn't a thing I could do to help him.

All I could do was accept that this was a wild animal who got in a fight with another wild animal, and lost. :(

Wednesday, December 7, 2011

Added a few pieces to the portfolio

It's not much, but at least I finally updated Gulf Coast Art Studio a bit. Maybe one of these days, I'll have professional photos taken of my work. Until then, you got lil ol vision-impaired me and my lil ol pink Canon Powershot.

Works that I hope to add to the portfolio in 2012:

Cape Hatteras acrylic design on illustration board
Pastel drawing of a horse...still deciding on a name for him
Several baby name door signs for family members
That dang Cracker Barrel tribute drawing from 2010 that I have yet to finish (I did share a preview on the portfolio...it's a nostalgic candy still-life collage)
Several Bob Ross style paintings, if I can return to teaching

I miss my art terribly and hope to be able to return to it soon.

Thursday, December 1, 2011

The Algebra Chronicles (Part 1)

BREATHE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ah, I am so very happy to be finished with my first (of four) math classes. Anybody who knows me knows that math is my Achilles' heel to an epic degree.

The course started out well. I made an A and a couple of B's. Was feeling pretty good about that:


Then I nosedived, and things got scary:


(Thank God the practice tests didn't count towards my grade. I would have failed miserably.)

That 73 was once a 61. The instructor reset everyone's test and we took it over. Boy was that a lucky break!

The final had me very nervous, considering that I failed the first practice test and got a C on the 2nd one. Miraculously, I managed to get a B on the real test! That helped pull my grade back up and I ended up with an overall B+ in the course. Woo!!!


It's my first non-A at MGCCC, but I am MORE than happy to accept a B in ANY math class! I'm taking that B and running like the wind. That is, until January...when I start the next level of Algebra. *SHUDDERS*

I'll be so glad when I'm finished with math so I can focus on Psychology and History again. I realize it's all a part of the process, though. I'm going to continue to do my best and try not to stress (<-yeah right)! :)

Sunday, November 27, 2011

Where I am today


It's no surprise, really. The past few days have been fairly productive for me. By the time I returned home from my brother's house last night, I knew what was coming. Turns out, I was having heart arrhythmia as a result of my potassium level shifting downward. I'm having mild paralysis, and now I'm too weak to drive.

I'm bummed because my Kansas City family is still in town, except one of my cousins who is flying out today. Tyler was my side-kick/teaching assistant/cooking buddy a few years ago...we used to hang out every weekend. Now that he has grown up and lives and works in Kansas City, I see him once a year at Thanksgiving. At the risk of sounding over-dramatic, I feel like part of my heart lives 860 miles away. Such a great kid (who's not a kid anymore...God, I'm old).

So today will be spent in bed. It's better than spending it in a hospital, on the street, or worse, however. By a mile. I will choose to be thankful always, even in the midst of pain.

Thursday, November 24, 2011

Just Another Cheesy Blog Entry

CHEEEEEEEEEEEEESE!

Yes, I've become a ham in my old age. And I am OK with that. I like ham. Although I like bacon more. A lot more. Mmmmmm...bacon. Wait, what was I talking about again? Never mind.

I hope everyone had a nice Thanksgiving. I was driving home this evening, saying "Thank you Jesus", because I have been somewhat functional over the past few days. I was able to drive around town and run some errands, as well as visit family in Pascagoula, Grand Bay and Bayou La Batre. My muscles are weak and I'm in constant terrible pain, but so incredibly grateful that I am not bedridden at the moment. I don't take it for granted. So blessed.

Thanksgiving pics and tired rambling to come. Stay tuned!

Wednesday, November 23, 2011

My favorite person in the world came to see me today! Happy Thanksgiving to meeeeeee!





Tis my one and only niece...Baby Jo!!! :) She has the most fearless and sweetest personality. I'm grateful that I was having a fairly functional day so I could get out of bed and play with her for a few minutes. I don't get to see her often since she lives in Louisiana, so this day is special.

I hope all of my U.S. readers have a wonderful and blessed Thanksgiving. To my non-locals, smile and enjoy the rest of your week. :)

Tuesday, November 22, 2011

4AM. Not asleep. Bucket Listing...

For those who have been following for the past few years, you already know that I have a Bucket List. I found my most recent list (modified in 2010) and it is now posted in my sidebar. I will revisit it at the end of the year, as I always do on New Years Eve, along with my resolutions and such.

I think it's going to be a painful review, considering what has happened to me this year, but I will take a look at it nonetheless and share my thoughts on December 31st as usual.

Some folks knock it, but making resolutions is nothing more than setting goals with a reasonable deadline...nothing wrong with that. Everybody should have goals. "Without a vision, my people perish." ~Proverbs 29:18

Been a rough couple days. Time for sleep. Talk to you soon.

Saturday, November 19, 2011

College Finals & Food Network Love

After a long outage, I am finally back online at home here in the backwoods. I feel like I can breathe again. Ahhhhhhhh! I'll spare you the drama, but I'm just relieved that I can log in to my math class at any hour of the day and study in peace and quiet again. Believe me, people, I need all the help I can get. Kidneys Smidneys, ALGEBRA just might be the death of me.

Courtesy of my other-side-of-the-brain, I wrapped up Art History last night, and thankfully I am walking away with a 99 in the class. My instructor worked with me where my condition is concerned. Had I known a museum tour/critique would be required, I wouldn't have taken the class, but I was well accommodated after explaining my situation. My alternate assignment was a research paper on Roman Emperor Justinian and his wife Theodora, who was one kick-ass lady.


Think "The King and I" meets "Moulin Rouge"...no joke. It is a fascinating piece of history, and I made a 100 on the paper.

I also missed a proctored test due to a paralytic episode, but was allowed to make it up a couple weeks later when I was able to drive to the proctor center. So grateful for that, because it saved my grade. Whew. I've been very lucky to have such understanding teachers at MGCCC. In January, I will officially be a Junior, and will take a few more classes there before transferring. I am so antsy because I know the clock is ticking. I can't help but operate with a sense of urgency, but I keep trying to remember to keep my eye on the prize, breathe, and take one day at a time.

Anyway, while offline at home, I got the urge to turn on the television. I know I know...crazy, right? I have a borrowed 13 inch basic-cable-ready TV that I have forgotten about more often than not. I'm a rock music radio geek, and sometimes I even prefer to sit in silence as I'm surfing the world-wide-web. But I turned on the TV a couple months ago, and I immediately fell back in love with...you guessed it...FOOD NETWORK! :-)

Call it irony, since I can't eat anything that these people cook, but my heart hasn't changed. I am forever a food nerd, whether my body agrees or not. There aren't too many shows on too many networks that I can stand these days. On FN, I like everything and everyone. I want to live with Ina Garten she's so comforting. I feel like Paula Deen's neighbor, and let's not forget the Deen boys *smooch* (oops...that smooch came outta nowhere...I swears!), Giada and her "mini-me" Jade are sweet, I gotta love Guy (I voted for him!), and Lord knows how much I love Robert Irvine. If you haven't watched Dinner Impossible or Restaurant Impossible, it is seriously your loss. I'm also a big fan of Good Eats, Sweet Genius, and Chopped. The haters can shove it. These shows rule.

But my favorite at the moment is...


The Next Iron Chef!!!!!

It is my dream come true for FN, because I've wanted to see the stars and judges duke it out in a competition for quite some time. Looks like I wasn't alone in that, and the viewers were heard. The Next Iron Chef: Super Chefs is the ultimate challenge. Who knew food could be so exciting?

I just love it. Unlike other competitions, where there is usually a bad apple in the bunch, every one of these people are adorable. I want them all to come to my house in the backwoods and cook and laugh and hang out. Such a great bunch of peeps...all of 'em.

I haven't been this passionate about a TV show in years. I not only refuse to miss an episode, I watch the same episode more than once to make sure I didn't miss anything. I'm reading everyone's banter on various sites, and I'm having a blast following several of these folks on Facebook and Twitter. While I do like everyone on the show, I admit I am rooting for someone in particular:

I adore Robert Irvine

Anne Burrell is hysterically funny

Chuck Hughes is hilarious as well as a cutie-pie

I want to kiss Geoffrey Zakarian's face (but you didn't hear that from me)

And the site of Michael Chiarello has brought back memories of watching Easy Entertaining with my late grandmother. It's a profound feeling...I smile when I see him because I think of my hero. I was my grandmother's part-time caregiver and she didn't have a clue who I was, but she sure thought Michael Chiarello was pretty. Ha! She is the greatest person I've ever known, and I'm grateful to have those memories of her.

But in spite of all of the above, I am on...




That's right, punks! I bet y'all thought I was voting for one of the gorgeous male contestants...eh??? WRONG! I'm voting for a CHICK! And not just any chick...Alex freakin' Guarnaschelli! She's freakin' awesome! She's gonna freakin' win! Yeeeeesssss!

OK so I don't know if she's gonna win, but dang it I want her to. I just do. I think she really wants it. I think she deserves it. In a perfect world, Alex and I would be BFFs and we would laugh and eat chocolate and she could teach me to cook and I could teach her to paint happy trees although she probably already knows how to paint happy trees since she can do damn near anything. Alex rocks. I'm just saying.

All silliness aside, I'll miss this show when it's over. It has been a fun distraction from the depressing sick-bed I've been merely existing in this year. It's the little things sometimes that make a difference. I'll take whatever I can get to make it through another day, and be thankful.

I now return you to your regularly scheduled program. :-)

Wednesday, November 2, 2011

Long Overdue Health Update

I'll be more in-depth in a longer blog entry, but for now here is where I stand:

As I've been saying all this time, my kidneys are not cooperating. That has been confirmed. Against the Nephrologist at USA and the Neurologist at MDA, the Nephrologist at UMMC in Jackson very reluctantly started me on a risky potassium-sparing diuretic, amiloride, to try to force my body to retain potassium, thus raising my blood levels. The first two weeks were HORRIBLE...got worse instead of better. End-of-my-rope-ready-to-die worse. But thankfully my body began to adjust and I've seen a little bit of improvement with slightly higher potassium levels. I went from fluctuations of 3.4-3.9 to 3.9-4.4. I'm able to drive short distances most days and sit up a little longer than before. I still can't perform basic every day activities well, though, like washing my hair or the dishes. I'm about to get my hair chopped. Haven't figured out the dishes yet, since I have no choice but to cook at home most of the time. That's only two examples of "normal life" that someone in this condition has trouble with. The struggles are pretty much endless, as all physical activity revolves around neuromuscular function. Everything from moving the body to breathing...it all requires consistent flow and correct storage of electrolytes to be successful. With HypoKPP, the transportation and storage of potassium is inconsistent. Therefore, chaos ensues.

I saw the Nephrologist again yesterday at UMMC in Jackson, and while he admitted he's stumped about exactly what's happening to all of the potassium in my body, he didn't hesitate to double the amiloride to try to force my body to retain more of what I'm taking in. My levels need to be in the low 5's if at all possible. His goal is 4.8.

If my potassium level can get to a range of 4.8-5.4, I would not only have more physical ability again as I did in the mid-2000s, I would be able to see for sure whether or not these recent serious episodes have caused any permanent damage. That's something I need to know if possible.

The amiloride is still considered extremely risky to my heart, kidneys, and body in general, and now it has been doubled. For me, it is worth the risk and I hope this will be the ticket to quality of life again.

Current daily meds: Avapro 150mg, amiloride 10mg, K+ 90meq, Magnesium 550mg, Sublingual B-12

These meds total over $300 a month and I have no income, so I need a financial miracle as well as a physical one. I honestly don't know how this will happen, but I greatly appreciate your continued prayers.

Sunday, October 23, 2011

I'm not dead.

Wow, it's been a while since I've posted, eh? This month has flown by, it seems. No internet service at home since September 28th, which is reason #1 that I haven't been rambling here more. I am at WIFI locations daily (thank God I can drive short distances right now) and utilizing my time as wisely as I can (college, business, updates to and from family and friends) which leaves little to no time for blogging.

Today, I'm at McD's using their interwebs and trying to relax a little, although that's not easy here among all the noise. This coming week, I'll dive back into school at a better location...perhaps even the school itself. I'm getting to the point in my math studies where I may need some assistance, and the school has a great tutor. I'm surviving the class, though, and currently have a 92 which shocks me a little (ok, a lot). And after making up a test and assignment that I missed while in an episode of paralysis recently, I am back on track with an A+ in Art History. Big thanks to my instructor for allowing me to do that.

The health update will have to wait till later...it will be a much longer blog entry. For now, I'm thankful to be having less paralysis than I was, and I'm hoping to gain more strength as time goes on. I desperately want to paint and teach again...trying to figure out a way to make that happen.

Wow, the noise is RIDICULOUS. I'm getting out of here. Later, peeps.

Sunday, October 9, 2011

The View From Here


Taken from my bed, first week of October


I looked up one day and realized that I never changed my calendar from April, the month my life came to a halt. It has been over six months since the Hypokalemic crash that triggered a drastic nosedive in my kidney and neuromuscular function. My world is completely different now.

Thursday, October 6, 2011

Offline

It's been a bad four weeks. Not going to get into it right now, but I will eventually. For now, I'm at wifi locations whenever possible to log in to my classes. I'll have B's for sure this time, and I'll be glad when the semester is over.

No internet at home = no time for blogging. I'll be back when I can.

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.

Wednesday, August 17, 2011

The next several days, and school plans

Thursday: To University Hospital in Jackson for EMG/NCV and Nephrology appointment

Friday: Recovering from the EMG from hell. :( Also, a young man I'm mentoring starts college...will be waiting on egg shells for him to tell me about his first day. I'm so nervous for him but so glad he's going. I've known him since he was born and I can't believe he's in college with me now!

Saturday/Sunday: Resting as much as possible

Monday: Log in to my classes and begin the semester!!!


I had to make the trip to the campus to get my receipt from the business office and go to the bookstore to pick up books. Mind you, I am really in no condition to do this, but I survived thanks to the staff accommodating me with a motorized wheelchair and the bookstore clerk taking me to the front of the (horrendously long) line. She found my books for me and security even helped me with paperwork and getting in and out of the bookstore without mowing anyone down (I did slam into a wall while going in reverse, but you didn't hear that from me). I was completely unable to speak, so it was interesting to say the least. Thankful for caring people at JC today.

Hopefully I will only have to return to the campus three more times during the semester, for the two proctored tests and to turn in my books in December. I feel like I'm on track to get my Psych/History degree. The only thing I will be missing in general requirements when I leave JC is Finite Math and Biology, which I will dive into upon entering the university. It looks like they do a constant flow of short terms where I'm headed, which means I can take two short term classes at a time and still be considered full time. Great news, because that will allow me to finish my degree in five semesters once I transfer, which is a whole lot better than the eight to ten semesters that I was expecting. I'm really, really hoping this works out. I also confirmed that I can get my Master's there in a year's time, and I am going to go straight into it as soon as I finish the Bachelor's. How lucky am I to have found a university as close as this one is (less than 4 hours away) that has comprehensive Psych, Social Studies, and Post Secondary Ed completely online. Teaching Psych and History online is the goal now, and I feel like I am well on my way. I am of course concerned about my condition and the fact that I cannot always sit up and communicate, however, I refuse to let fear of the unknown stop me from pursuing this. My college experience has been stressful, but worth it and I am pressing on. I refuse to lay here and merely exist. I am going to do something with my life.

Prayers appreciated for this Thursday's hospital appointments. Need answers and help.

Thanks,
Kelli

Wednesday, August 10, 2011

Randomness

I discovered yesterday that I'm 1.5 lbs to goal weight. As always, this is the result of being very ill. While I'm happy to be nearing the weight that's ideal (health-wise) for me again, I'm never happy with how it happens. Nevertheless, I hope my condition will somehow improve and I can still keep the weight off. I don't count calories. I'm too tired. I have developed an extreme intolerance to many foods since my drastic decline...foods that I've eaten my entire life. It's really odd how my body is constantly changing in that way, and I hate it. I am having to nearly eliminate grains, tomatoes, and cheese, which are my three favorite foods. I have been lucky to find that Swiss cheese is naturally very low in sodium, so I can have that. It's sure not cheddar or mozz, though. I still have a lot of tomato-based foods in the cabinet and freezer, and I'll go ahead and eat those so I don't have to throw them out. I imagine I will still eat salsa in moderation, but I'll have to give up pasta and my whole wheat pizza pretty much for good.

This is of course the new development. I've had to eliminate a host of other foods over the past few months and years as well. At this point, I am pretty much reduced to low-fat, low-salt proteins and non-starchy vegetables. I still eat some grains and fruits in strict moderation, and to keep me from indulging in sweets that will result in HypoK attacks, I have given in to sugar-free goodies also in moderation. I drink nothing but water and tea, which I believe has been the biggest factor in my weight loss with the exception of ditching fast food. I've also cut down my portion sizes and eat only enough to take my meds (since I have to take them so many times a day, and supposed to eat each time). I still order from Gabe's, because I am good friends with them and I know they make everything as fresh and healthy as possible. For a little drive-in tex-mex joint, they are extremely health-conscious and I love that. Gotta have my taquitos every once in a while...a girl's gotta keep her sanity.

I am out of my mind, but I kept my college fall schedule. It is strictly online of course. I honestly can't afford to give up, and don't want to. So as soon as I return from Jackson, I will be diving into a year of Algebra and Humanities (Art History and World Lit) online through JC. Then it will be on to my Plan B (Plan C? Plan Z?) and transferring to university to major in Psychology, with a minor in Social Studies. I am actually really looking forward to studying Psych, even though it is not what I wanted to do with my life. The reality is that I am forced to attend college from bed, and if I manage to work again, it will also have to be done from bed. So the goal now is to get my Master's in Psych and teach Psych and Social Studies online at a community college level. I hope to have enough school funds left over to take some graphic design courses online as well through a continuing education module. I don't know how well I'll learn graphic design online, because I am a visual learner, but we'll see. Perhaps someone has photoshop, illustrator, and in-design tutorials on YouTube. I haven't even thought to look. Then again, I don't have Adobe on the Macbook yet so I'm not in a hurry. Hoping to eventually get my hands on CS5, despite it's ungodly price.

I'm liquidating art supplies and paintings to pay for meds. No sense in the paintings being stacked up in the way when people have inquired about them. Might as well make 25 or 50 bucks if possible. My potassium is over $100 a month and I currently have no income.

I put my Prismacolor drawing back on the table (yes, the one I started in drawing class a year ago). I opened my pencils and picked out the colors needed to finish it. I am still not able to draw as my arms are extremely weak, but I do want to try to knock it out sometime before I kick the bucket, please and thank you...

Thursday, August 4, 2011

Progression

It's not always good.

My condition has greatly progressed as a result of the April and May attacks. I continue to have paralysis, and my body feels so much more unstable than it used to...I can't even explain how unstable. There are days when I can't sit up for more than a few minutes at a time. I can't complete many basic every-day tasks anymore. I now have a weakened esophagus and I cannot always swallow or speak. My voice is gone at the moment, as my vocal cords are partially paralyzed as a result of the constant fluctuation of my potassium levels.

My life is so different now. Hard to describe, but the word prison comes to mind. I am bound by this disease, and I am pissed off. That's just the ugly truth. I hate my life but I'm fighting for it as best as I know how. Sometimes, I feel like I'm fighting alone, but I know I'm not.

On behalf of all who suffer with Hypokalemic Periodic Paralysis, I started the awareness album on Facebook. People can turn up their noses all they want. I am real, I am open, and right now, I am pissed off. And those who truly love me and care about my well-being are supporting my efforts and keeping me going.

Knowing that I would very likely not be in this condition had I been listened to and taken seriously over the years is down right despairing. This battle began when I was 12 years old. There are so many people with this condition who were diagnosed and treated in their youth, and they lead fair, even good and productive lives to this day. Instead, I've been ignored, shunned, mocked, falsely accused, mistreated...and now, I'm like this. I saw it coming, I made it known, and I was pushed to the side.

Damn right I'm mad.

I'm in battle for a life that has barely begun. It's not even a life that I like, but I am trying nonetheless. I grew up a timid, submissive, non-aggressive doormat, and now I see clearly where that has brought me today. It is disheartening. There is nothing I can do to change my past, but I will fight with all that is within me for the future.

I have to believe in purpose, because I believe in God. He still holds the blueprint in His hand. I don't see it and I don't understand it, but I believe in it. I am here for a reason whether it seems that way or not. I pray that my purpose will be fulfilled, whatever in the world that means.

May He be my strength and my help in this time of progression.

Tuesday, August 2, 2011

Not a real blog entry

I have a lot to talk about, but I don't feel like typing it all out right now. I'm just completely exhausted, and not well.

16 days until an EMG and Nephrology consult in Jackson. Can't get here fast enough.

My life is wasting away.

Tuesday, July 12, 2011

I don't even know where to start...so I won't.

At least not in this entry. Just saying hi, and I hope everyone else's July has gone better than mine. Stay tuned for a Periodic Paralysis update, a teaching update, a gift store update, a school update, a painful self-awareness update, and why I am wearing this...


Talk to you soon.

Monday, July 4, 2011

Last week's Neph appointment

It was very thorough and, I believe, a huge step in the right direction. I am working on a blog post to talk about everything that was discussed. It's probably going to be very long-winded (who, me?)...stay tuned if you want.

Until then...have a safe and happy Independence Day!

Tuesday, June 28, 2011

Tough times

It has been nearly 3 months since my big crash. After years of working my butt off yet never making enough money to make ends meet, I have never pursued public assistance (with the exception of college grants) until now.

As I said in my last update, University of Mississippi Medical Center approved me for 100% financial aid. The task now is to get rides up there every time I need to go, and to get lucky enough to have a team of docs who listen and try till death do us part. All prayers concerning this matter are greatly appreciated.

I am in my 30's, I am intelligent (for the most part...Mathematics, you suck), and I have acquired a great deal of job experience in spite of my severe physical impairments. I've run law offices - worked in hospital administration, real estate and insurance - handled fifty line switchboards - negotiated with clients and attorneys - budgeted hundreds of incomes - been a desktop publisher - proofread, edited, and created hundreds of legal, medical, and other documents and business letters - controlled all aspects of a commercial print shop (complete with 4-tray darkroom, no processors in my day, people...I used chemicals to develop negatives and aluminum plates, used manual printing presses, and hand-collated tens of thousands of books) - taught all ages in public and private schools (various subjects) and now I run my own art instruction business. That doesn't include my volunteer work. Hello, ten page resume of chaos. Ha! Unfortunately, the reality is that I am incapable of working outside of my sick bed at the present time, and that doesn't appear to be changing. I hope and pray to God that it will change, but for now, it's not. Through all the years of struggling and being sick and losing jobs due to my body crashing, I have never received public welfare, but now I am. I don't see where I have a choice, and my case workers (I have one in Jackson, and now one in Moss Point) agree 100 percent.

I met with the DHS today, where I applied for EBT. They gave me an emergency appointment. The lady knew by looking at me that I was not capable of applying for unemployment or getting a job, but had to ask "Have you refused to work?" "I'd LOVE to work!" I told her, and we both laughed. I gave her a copy of my diagnosis and my most recent doctor's report, as well as my pitiful 2010 tax return. She filed my info and approved me on the spot. She said that she would make sure that my money is in the system within 6 days. She explained how the card worked and encouraged me that it "wasn't so bad". I didn't cry, but she knew that I wanted to. She carried my paperwork for me, showed me to the door, and wished me well.

I am lucky that relatives have helped me survive thus far, and I will never take that for granted, but I am in the process of locating medical records so I can apply for SSI Disability at their request. I am seriously ill at this point, clearly unable to work, and I put this off as long as I could. I hoped that I would recover enough somehow to work again as I did several years ago, but that would require a miracle now. And I know that sitting around with zero income waiting for a miracle is not reasonable, regardless of the fact that God is able to make it happen.

My difficulty with doing all of this has nothing to do with pride, but in being told that I'm entitled to it because I cannot take care of myself. Entitlement is a state of mind that I have a hard time grasping. I want so much to be a "normal" independent adult and a productive member of society. I have always wanted that more than anything in the world. Perhaps it is because I was raised that way. My mother, brother and I lived in poverty, but never asked for a handout. My mother's income was carefully spent, and I learned how to manage money, to the last cent, in my childhood. I've always heard nothing is free...earn your living...be responsible...make it happen on your own. Good advice, and although times were often very tough growing up, I appreciate what I learned as a result.

But the reality is that I am going to die young if I don't receive real, regular medical care. I am going to stay sick if I don't have access to the right foods and medications on a daily basis. And while I cannot live on the SSI Disability that I would receive if approved, I will surely not make it with nothing at all.

It's just the facts. My head is not in the clouds. This is my reality. I hate it so much. I don't know if I will ever accept the hand I've been dealt, but tough times or not, I am doing the best I can. And I always will.

God help our children

America, allow me to introduce you to REAL "reality TV". If you are in a position to help someone, please don't pass them by. Each one, reach one...if at all humanly possible.

Saturday, June 25, 2011

News of the week

Got the approval letter from University of Mississippi Medical Center for 100% financial assistance. Now to get back up there in August and get some help. In the meantime, I have a local appointment next Friday. Perhaps I can at least get some advice and/or tests until I go back to Jackson.

I managed to drive to Mom's to pick up mail, which is good news. She had to bring it out to my car, though, because I was too weak to get out and go inside. It was hard enough just getting home and getting through the house to my bedroom. I hope to see some major improvement soon so I can have quality of life. I still can't use my muscles much at all without a decline so I have a very long way to go.

I sold a lot of my art supplies...sad but a blessing as the money was greatly needed. I will use part of it to purchase a Cardy-Ion Meter, which is a device that monitors potassium levels. It isn't easy to use but I'm going to learn how to use it. I think at this point in the progression of this disease, I'm crazy for not owning one. It's a whopping $250, but hopefully it will be worth it.

I've decided, though, that as long as I don't get any worse, I'm going to return to school part time, strictly online, in the fall. I hope I don't regret it.

Tuesday, June 21, 2011

Good days and bad days

I guess you could say I'm at a stand-still, although as always, a roller coaster...if that makes any sense. My days are overwhelmed by nothingness most of the time, with the occasional change in routine that I welcome if it's anything other than a decline. Friends came to visit me yesterday and that was such a treat. I love my peeps and I'm glad that I was able to get out of bed to see them.

With the HKPP, I'm having ok days and not so ok days. I'm still using two canes and muscle activity is extremely limited, but some days I'm managing to get a few things done around the house. Mostly making simple meals with help of a bar stool that I borrowed from a friend so I can sit at the kitchen counter. My stepdad bought me a crock pot (on Father's Day, he is the one giving ME gifts...what is wrong with this picture? And can I keep him?) and I think it will make life a little easier. I look forward to trying it out later today.

My diet has been limited even more than it was before. I was already on a moderate glycemic, moderately-low sodium diet, but now I'm on a VERY low sodium diet (zero sodium when possible) and only enough sugar to keep my blood sugar levels up enough that I don't fall out from Hypoglycemia. It has been quite the task finding low/no sodium foods, but I feel like I've done pretty well through research and online stores Healthy Heart Market and Spices Inc. I've also been surprised to find that Walmart carries more "no salt added" canned products than they used to...things like tomato sauce, which I use often. I'm so grateful to have plenty of groceries in the pantry and freezer right now, thanks to my mom and stepdad who have come to my aid during this time. I'm very grateful for that and don't take it for granted.

I'd be dead if not for my aunt and uncle, who are helping me with all of the medical stuff. They have saved my life time and again, I truly believe that. When I didn't have anyone else, they were there and I will never forget everything what they've done and continue to do for me. I have a roof over my head and doc appointments only because of them. As for these appointments, University of Mississippi bumped my Nephrology consult to August 18th. CRAZY and not acceptable as I was doing very badly a few weeks ago, so I saw my primary physician in Mobile on June 1st and she referred me to University of South Alabama Nephrology June 30th. I'm sure I've already mentioned this but I'm too lazy to verify that, so I'm typing it out again. That's 10 days away and it can't get here fast enough. I hope and pray to get some help. Somehow, I've got to get on my feet again. I have cabin fever bigtime. I can't wait to be able to drive and walk and function in general again.

I've had some semi-good times, meaning that I'm slightly more functional. My heart and esophagus issues are better some days than others. Still on two canes, but maneuvering around the house and doing some basic tasks. I finally managed a little bit of laundry (although it's not put up...still sitting in baskets all wrinkled...oops) and dishes are occasionally washed. I've also done art inventory and put up a ton of supplies for sale over the past week, most of which have already sold...YAY! What a blessing. That money is desperately needed, and it will be going toward my medications which are absurdly expensive. I also plan to purchase a Cardy-Ion Meter soon, which will allow me to monitor my blood potassium levels at home. I hope it will be very helpful in managing this condition, as right now I'm simply flying by the seat of my pants wondering if popping all of these potassium pills (doc has prescribed 80MEQ a day + extra PRN) are doing me enough good. We'll see...

Anyway, it's 5AM. I had to take another round of potassium and sit up for half an hour, so I figured I would give an update. Laying back down now...talk to you soon.

Tuesday, June 14, 2011

Monday, June 6, 2011

Exhausted Video Update




(June 10 - Oops, this vid won't be available while I've deactivated my Facebook account. I'll be back soon, and the video will return with me. Sorry 'bout that!)

Wednesday, June 1, 2011

Today's Doc Appointment

I could barely swallow by the time I got to the doc today. My esophagus is weak and feels like it's caving in. I can't lay down and can't even yawn without it trying to close up, causing me to gag and cough. My chest is killing me, and the rest of my body hasn't changed much. Walking with two canes sometimes and in a wheelchair when out and about. Dr. J was very unhappy and quick to give me a referral. Nephrology appointment at University of South Alabama June 30th was the soonest they could give me. Sooner than the appointment in Jackson, though, so we'll see what happens.

Meds have also been switched back to slow potassium citrate at (MDA Neuro) Dr. V's suggestion. The dosage was doubled, and fast potassium is PRN. Citrate does a better job of alkalizing the body than Chloride, apparently, which is what my body is needing since it's incapable of doing it on its own. Having HKPP with the presence of RTA is a serious double whammy, considering that both are primary (whereas HKPP is often secondary in others...I have the familial form).

So now, just waiting again. Lord give me strength.

Friday, May 27, 2011

Appointments and frustration

My pH is 6.75 today which tells me that my body is retaining potassium again. The test strips have always seemed to be accurate, so I hope they are this time also. Too bad nobody listened to me when I warned them that I was in acidosis a year and a half ago. It takes a serious event that could have killed me to wake people up, and only a few have even acknowledged it.

I've finally been given an appointment with University of Mississippi Nephrology. July 21st...over seven weeks away. I've made an appointment with my local GP to address my last two serious attacks and the symptoms that I'm dealing with as a result. I expect her to refer me to a local Nephrologist, and possibly a Cardiologist. We'll see. The appointment is Wednesday.

I'm weary.

Tuesday, May 24, 2011

Tuesday Periodic Paralysis Update

I have yet to recover from my last attack. My entire body head to toe is too heavy to function, and my chest and esophagus still feel like they are caving in. As usual, my heart rate was flipping all over the place during the initial episode of paralysis, but ever since it has been consistently too low. Last night, it dropped to the 50's and stayed there. My "normal" has always been in the 90's.

So early this morning and throughout the day, I have checked my pH and found that urine is 7.0 and saliva is (as usual) in the 5's and 6's. The bad news is that my saliva pH is still too low, as normal saliva pH should also be 7.0. The urine pH of 7.0 is good news because it dropped from 7.5 (confirmed by labs), which indicates that my kidneys are wasting a little less potassium than they were. My low heart rate (55-62) in addition to the change in urine pH told me that I needed to back off the potassium a little, so I have. My physical condition has not changed whatsoever...severe heaviness head to toe, including head, chest, and esophagus. Not walking. Not able to perform basic tasks. What has changed is my heart rate. It has gone from consistently low to normal again (76-95) with occasional too-high-too-low flipping (111-59) like it was doing before. Both the consistently low heart rate as well as the flipping (arrhythmia) are dangerous and have the same end result (heart attack) if not brought under control, so I am not winning that battle right now. I can't help but wonder if I had a mild heart event during my last attack, and will bring it up to the doc when I finally get an appointment. I would jump at the chance at an echocardiogram right now. I think it is greatly needed, but I don't believe I'll ever get one due to inability to pay.

The worst news is that I am absolutely not recovering thus far. Never before have I been in such unstable condition, and my body has felt drastically different since the last two HypoK attacks. The ER is full of good-for-nothing fools and both times I became worse in the long run instead of better. So returning to the ER is senseless and out of the question. I appear to be at a stand-still regardless of my potassium levels, and I don't know what to say about that right now. Nor do I know what to do.

My mom says "God's will be done". I pray that I don't die young because I'm poor. There is so much that I wanted to accomplish in life. Am I really done here?

Saturday, May 21, 2011

A reminder from me to me

This has honestly been one of the hardest weeks of my life. My condition has plummeted to depths that I feared. I prayed it would never happen. But it has. Being abused while completely paralyzed in the ER a week ago was a traumatic experience, as if being completely paralyzed, helpless, and at the mercy of strangers wasn't bad enough. I've gone through a flood of emotions, from rage to despair to just plain numb.

It happened again last night, and I chose to stay home and ride it out. I sent a message to my aunt as I felt the attack coming on. She came over and fed me potassium at my bedside. I binged on potassium...somewhere in the neighborhood of 215 MEQ in a 12 hour period, to try to ward off the paralysis. My heart rate was low and my breathing and swallowing labored throughout the night, but I decided that I would rather die than go to the ER again. And I meant it.

I've been drinking potassium all day today, and I am still partially paralyzed. I am on a walker when I get out of bed, but I've only been able to get up and walk once today. It took everything I had to make it through the house to the kitchen and back, and I had to take potassium pills in addition to the liquid to try to ward off another full-blown attack. As I sit here and type, I can still barely move my face, and it still hurts to breathe.

My condition has spiraled out of control to the point of helplessness. I sit here, lay here, merely exist here...and wait. Wait in a state of physical and emotional numbness.

So my recent news interview airing this week was good timing.

It's surreal to sit here and watch myself on television. To hear the optimism in my own voice. To be reminded, by me, that hope is everything, and that I still have it.

There is no doubt in my mind that finding the Hypokalemic Periodic Paralysis Network on Facebook has saved my life. I have learned more about my condition in 2 years than I learned in the 20 years that I suffered prior. Understanding how this disease works and the things that I can do to manage it has been absolutely vital to my survival since my quick progression. The trigger that I am currently living with, acidosis, is out of my control, but the countless other triggers that could be present...that HAVE been present in the past...are under control because I now know what they are and what to do about them. This information, thanks to Facebook, has changed my life. I needed the reminder. Desperately.

God knows I need His strength to carry on. And this week, it was in the form of a perfectly timed word of encouragement...from me, to me. "I have hope again, you know"...even when it seems like hope is gone.

Friday, May 20, 2011

On the news...



The interview was done in April and aired tonight across the Mississippi coast. I was running on no sleep in a major brain fog. My description of HKPP was a little off and I wish I would have tried to explain it in a different way. Hindsight is 20/20 though, and the important thing is that the word is out. Immediately after my segment, I heard from someone who lives only an hour and a half north of me who has a similar condition! Amazing. Many thanks to WLOX for allowing me to talk about Periodic Paralysis.

Thursday, May 19, 2011

Thursday Periodic Paralysis Update

My body is making a slow attempt to recover from this past weekend's episode, just as it was making the attempt after last month's episode. My life revolves around potassium. I take a dose, then count the minutes until I can take another one. I am moving better than I was, but still in bed most of the time and on a walker otherwise. My severe weakness is generalized (overall body) as the last two episodes of paralysis were.

As if I needed anything else to complete my week, I have a kidney stone en route in my lower left side. At least it's moving this time. I haven't brought out the pain meds yet, and don't plan to unless it becomes utterly intolerable.

Speaking of meds, the current ones: Effer-K 25 MEQ x 4, Mag Ox 400 x 2, Claritin once a day, Avapro 150 once a day. As always, the Valium and Demerol are PRN for kidney stones, migraines, and pulled muscles/cartilage. I almost never take them. The meds will expire before I take them all.

I hate pills. I swear to God I hate them so much. I'd do anything to avoid taking medication. I'd do anything to have a body that worked properly. I'd do anything to have quality of life.

Sometimes, all of the effort seems to be in vain.

I pray for a method to this madness.

Wednesday, May 18, 2011

Home from University Hospital

My MDA appointment went about as well as it could have, I guess. The doctor is very knowledgeable and kind. He plans to treat my Hypokalemic Periodic Paralysis including genetic testing but is sending me to a Nephrologist first to try to bring me out of acidosis. He said as long as that trigger is out of control, I won't be able to manage the HKPP at all (which is what I've been telling local docs to begin with, and they didn't listen...IMAGINE THAT).

So I'm back home, playing the waiting game, trying to figure out what in the world I'm going to do until I am approved (financially) and given an appointment to go back to the hospital for further treatment. Finding transportation back and forth to this hospital (over 8 hour round trip) will be a task also.

I don't know...I'm just glad the MDA Clinic is on board to an extent. It's one step in the right direction and I'm thankful.

Sunday, May 15, 2011

Infirmary West Mobile

I went into a full Hypokalemic paralytic episode yesterday. Upon arrival all the way through today, I was mocked and mistreated by the nursing staff at Infirmary West. I am contacting an attorney next week, and I will be spreading the word about this hospital and their ignorant, apathetic, abusive, sorry excuse for a nursing staff.

I am home and back to square one, unable to walk despite my potassium level being raised to high-normal. Damage may be permanent.

This has been the worst weekend of my life.



P.S. - I've recently edited this and other entries only because I have since introduced my students to the blog, and while my feelings have not changed toward this hospital's ER staff, I will be keeping the "brutal" side of my honesty on my private blog from now own. Thanks for understanding.

Tuesday, May 10, 2011

Still here...quick update.

It's been over a month now. No big changes over the past week. Having good hours and bad hours.

Good = using two canes to get to the other side of the house.

Bad = feeling like I'm going to die.

Doc appointment with the MDA clinic in Jackson is on as long as my cousin doesn't go into early labor. My aunt and uncle will be in Kansas if she does, but her doc says she's on schedule for the end of the month. (YAY BABIES!)

Still waiting to hear about my TV interview. It's supposed to air sometime this month. I really hope it helps to get the word out about Hypokalemic Periodic Paralysis. I will post the video and transcript here when I get it. The Facebook groups are buzzing and we're all learning more from each other every day.

I'm getting as much paperwork together as I can for the new doc. Who knows if he'll even look at it, but I will have it ready for him anyway. I am not taking no for an answer...something's gotta give. I have $200 in the bank and I can't walk, drive, work...I'm in serious desperation mode.

Prayers appreciated that I get the help that I greatly need.

Saturday, May 7, 2011

HKPP Update: Pulse Ox & Thoughts

Feeling very badly this morning...labored breathing, painful tingling, and it seems like I'm declining again. Took a KCl 20 at 6:20am, and another at 9:30.

I put on the pulse ox and the first reading was heart rate of 125 and oxygen of 82. I knew that couldn't be right, and thankfully my heart rate fell to normal shortly after. However, my oxygen was 84 for several seconds, eventually rising to 89, where it stayed for a few minutes.



After a few minutes, it gradually rose into the 90's and ended up here...I suppose compensating for a little bit of lost time.



I also took a 2 minute video of the pulse ox so my friends at the Periodic Paralysis Network can tell me what they think about the bar that's raising up and down. Supposedly you can tell whether or not you're having arrhythmia from the fluctuation and speed of the bar, but I'm inexperienced and could use their input. I'm going to upload and send it to a friend shortly.

My heart rate was fluctuating a lot yesterday...69 to 110...and it was a terrible day. I felt awful and was almost on the walker again.

Basically, the pulse ox is doing what it was doing the night before I went to the ER. I was in nearly full paralysis, and I feel like I'm slipping towards that direction again. I have no idea why other than triggers (temperature, not sleeping, pain, muscle activity of any kind...this includes lifting anything, standing and sitting up unassisted) combined with not enough potassium. While I believe that I'm going to have to eventually increase the amount I'm taking (again), I am being careful to spread out the potassium to four to five doses a day in spite of the fact that my levels didn't raise one-tenth of a point after more than doubling my intake almost four weeks ago. I'm not sleeping at all, though. I'm horribly weak and exhausted, but the pain is keeping me from sleeping. If I had to guess what an electrical short circuit feels like, I'd say this.

I will also say that I'm a little surprised that the more potassium I take in, the more stable my heart rate is at times. There have been many moments when my HR was between 95 and 115, and my heart rate would fall back to the perfect 80's after taking potassium. I wasn't really expecting that.

I don't know what else to do. I'm trying my hardest to beat this.

Just keeping a record. I'll be printing it out for the MDA doc.

Friday, May 6, 2011

College, Summer, & Beyond

The Spring semester has finally come to a close. It seemed long, but it always has. I'll spare you the drama and simply say that although I had to withdraw from two science classes, I was able to keep my two psychology classes and I aced them with a 100 and a 97, keeping my GPA in tact.

I'm still down for the count...going on a month now...so I'm out of school until further notice.

I emailed my Graphics instructor and told her that I would not be able to join her program (it's all day campus classes) unless I fully recover. If and when I do, it will be 2013 at the earliest now unless I can manage a full time schedule at MGCCC in 2012. That is unlikely but certainly not impossible if I can get my body under control as it was in 2005. I'm trying to remain hopeful that I will somehow still complete my planned degrees within the next few years.

As of right now, I just dropped my summer semester...it's coming up soon and I can already see that it's not going to happen. I'll graduate later than I wanted to, but I hope I'll be able to return at least part time in the fall. I pray this summer will be a time of recovery. It has to be.

I miss my art. I miss my art classes. I miss teaching and I miss my students.

MDA appointment is coming up, and I still don't have a confirmed ride to Jackson. Prayers appreciated that I make it up there, and that the doc will properly treat me.

Talk to you soon.

Wednesday, May 4, 2011

Now in my possession


25MEQ (977mg) fast-acting effervescent potassium...the happy medium between the standard potassium pills (which are slow) and a potassium IV (which requires hospitalization).

I've been in bed almost a month, and struggling for years. I'm sick of having little to no quality of life. I'm not settling for anything but improvement.

Game on!

Saturday, April 30, 2011

Periodic Paralysis - The April Crash

This blog entry contains LOTS of TMI (too much information). Fair warning!!!

It has been three weeks since the Periodic Paralysis attack that has left me incapacitated. It has been a roller coaster on a daily basis, as usual, but so much more extreme than before. I knew that I was in an "abortive attack" and going downhill, but I so hoped I would not have a major episode like the ones I had in my teens and early 20's that left me crippled. Unfortunately, it is official and I have not yet recovered.

For those in the HKPP know, it was a "rest after exercise" attack. In summary, my muscles allowed me to barely make it through a teaching workshop, where I was on my feet for a few hours. As soon as I sat down, the attack kicked in full force and I drove straight to my sister's house. By the time I got there, I could barely lift my legs. Her stepdad and my brother drove me home and helped me walk into the house, gave me my meds (Avapro, Potassium), and helped me into bed. I put on the pulse oximeter and noticed my pulse rate flipping between the 70's and 80's down to 44, back up, down to 43, back up, then down to 3, then 2, then 1, then 2, 3, 4, then back up to the 70's and 80's again. I put the cell phone on the bed with me by my pillow and I fell asleep. I woke up the next day and still couldn't function...my body had not recovered at all and I knew I needed help. I managed to turn on my side and grab the phone, where I sent a text to my brother and to my friend Katherine, saying to both that I needed to go to the ER. My brother picked me up around 4 PM and we arrived at Providence at the same time as TWENTY-SEVEN AMBULANCES. I kid you not. There was a pile-up in Mississippi near the state line, and ambulances were being diverted from other hospitals to Providence.

The triage nurse took my info, and although I could barely lift my head, thank God I was able to speak so I could say why I was there. He said he had never heard of it. Big fat hairy deal, pal...you and every other nurse I've ever known. I was unaffected by his lack of knowledge, but not exactly thrilled that I was put at the back of the line.

So we waited. For hours. My brother talked to other waiting patients, and I sat quietly as the flaccid paralysis became worse. By the time I was given a room, I could not use my body from the shoulders down. My brother and the little nurse aide managed to pick me up and put me in bed. The nurse came in and I explained that I was in a severe Hypokalemic attack but it was important to note that my potassium level would be in normal range (HKPP is not quite the same as true Hypokalemia, it involves a downward shift often in normal range). He said he understood. Then the doc came in and I repeated myself. As I began to explain muscle channelopathy and what needed to be done (like I've had to do with all doctors and nurses in the past), he cut me off and said "Yeah I know what it is." Wait, what? I was nearly speechless, but managed to say "Oh...ok. Great, thank you." That was an unprecedented moment. The ER doc knew and believed in Periodic Paralysis. Hallelujah.

They checked my serum potassium level, and I was right. It was 4.3, which is perfect for a normal human being. Not for Kelli, unfortunately. So they hooked me up to an IV, and only two mistakes were made. One I knew and told them about, but they of course disregarded it. Sodium chloride is bad news for an HKPP patient, as excess sodium pushes potassium into the muscle cells. Therefore the IV fluids, even after they added a bolus of 40MEQ potassium chloride, did nothing to bring me out of the attack. The other mistake, that I was not expecting, was letting them give me Morphine. I had an adverse reaction and thought I was going to DIE from the pain. Had I been able to move, I would have curled up in a ball and cried. But I couldn't, so I laid there and moaned until the pain finally passed. I swear to God it was as bad as a kidney stone...I couldn't believe it. Morphine on an empty stomach is on my "NO FREAKING WAY" list from now own.

The bolus of potassium, which usually hurts to infinity and beyond, didn't faze me. I even asked them if they were sure they had enough in there, because I didn't feel the familiar blazing fire of cramping that normally comes from a KCl IV. So the Morphine was, by a mile, the worst part. Sheesh.

I could move my forearms just a little before they discharged me, but they were still too weak to use and I couldn't move my legs at all. Two nurse aides undressed/dressed me, making light of the fact that they had to strip me "butt naked"...ha. Yeah, I don't have room for shame anymore...too many nurses and doctors have seen me butt naked, thanks. My uncle showed up, my brother left, and I was discharged at 3 AM Monday...still unable to move most everything and convinced that I was either going to throw up or pass out. My uncle brought me home as I was dry heaving in his vehicle, and it was quite the experience trying to get me in the house. I had zero use of my legs and my arms were on fire at that point. After several attempts to bring me to my feet, we agreed it was not happening. I told him where to find a rolling chair in the house, and he rolled me (getting up the steps was interesting) straight to my bed, where I finally got several hours of real sleep thanks to 60mg of Flexeril (injected before I left the hospital) and a Phenergan (home script for nausea).

My primary physician's office fit me in the following day, Tuesday, and I had not improved. She saw me in the wheelchair and I told her what I needed based on what other patients in my condition were on and what the ER doc suggested. Double the potassium, switch it back to Chloride, and a PRN script for Effer-K. She didn't hesitate. I told her about the pulse ox and the numbers flipping out. She confirmed that I had probably experienced heart arrhythmia. She also signed my referral to the MDA clinic in Jackson, and I finally(!!!!!!!) have an appointment with the MDA Neurologist there on May 17th. I do not have a confirmed ride to Jackson (four hour drive), so prayers appreciated that I find one.

It has been a very rocky road. In bed most of the time, on a walker sometimes, awkwardly on crutches other times (but that doesn't last long), and I've gotten to the point where I can occasionally use two canes to go short distances in the house. My potassium intake was 40MEQ a day before the attack. It is now 80-120MEQ a day. I will take a pill and improve slightly, then decline again. I returned to the doc for a potassium check this week, and my blood levels have not budged. Still 4.3 just like in the ER. I am at a loss as to what this really means, but I have ideas. I will share more about that in a video later.

On a more interesting note, I had a television interview that will air on local south Mississippi TV in early May. The video and article will be made available online, and I will share it as soon as it is available. The lady who contacted and interviewed me was lovely, and said she was excited to share my story. I hope and pray it helps to get the word out about Periodic Paralysis and the support groups that are available online, especially through Facebook. I have no idea where I would be if I had not joined Facebook and discovered that group. It has taught me AND my doctor more about this condition and how to manage it in an attempt to not only improve quality of life, but save it. That is HUGE. I am a terrible public speaker, but I hope my segment turns out ok. I'll keep you posted.

So anyway, it has been three weeks since the "big" attack. I feel like I'm on fire. I can't sleep. I'm exhausted, weak, and miserable. But I am hanging onto hope that I will recover from this. I'm staying as upbeat as I can and I'm grateful that [some] people are finally starting to listen.

I will work on that video later. I will be talking about this experience again and adding more info, including my triggers, specific meds, history, and ideas about what is happening.

I greatly need and appreciate your prayers. Talk to you soon.

Kelli

Saturday, April 23, 2011

To the conflicts of the past year...

That you may retain your self-respect, it is better to displease the people by doing what you know is right, than to temporarily please them by doing what you know is wrong.

- William J. H. Boetcker

Friday, April 22, 2011

VLOG 4-22-11



The epitome of rambling exhaustion...haha.

P.S. - My words don't match my lips! Like a cheesy kung fu movie!!! Bwahahaha funnnny!

Thursday, April 21, 2011

Periodic Paralysis Update

I've been wanting to write, but words have not come easy. It has been almost two weeks since my serious crash, and I have not recovered. I have seen little improvements here and there, and I'm grateful. My heart rate fluctuates a bit but is pretty much stable. I can get out of bed and walk to the bathroom that attaches to my room...it's only a few steps from my bed, but it's a start. I've also been using MawMaw's walker to go to the kitchen (alllllll the way on the other side of the house) at least twice a day now. I've slowly been maneuvering around the kitchen hanging onto stuff, and even sat in a chair and loaded the dishwasher the other day. Took forever and resulted in a rough night, but I did it. Still more dishes in the sink to be washed as soon as I can use my muscles well enough to do so. At the moment, it seems that every little thing is a trigger that causes me to decline again. Standing, lifting anything (including arms and legs), sitting too long (sometimes I just fall over on my bed...who cares what position I end up in, as long as I can sleep to escape for a while), weather, eating, not eating, taking a shower, not sleeping, sleeping, changing clothes...seems like everything is against me and the simplest of functions have become grueling if not impossible. I may not be able to do much of anything, but I'm a far cry from two weeks ago when I could move nothing but my head and neck, had a cath, and was butt naked in front of nurses and God knows who else in an ER hospital bed. Believe me, I'm not taking the fact that I can sit up in bed unassisted, go to the bathroom, and use my fingers to type for granted at all. Praise the Lord.

But this is definitely a very slow progression. I improve slightly for short periods of time, then decline again. I can feel a difference, but it's as if more than doubling my potassium intake is still not enough. My body is just not winning this fight, but I'll never give up.

After what...a year(?) of trying to get the MDA's attention, I finally have it now. I have an appointment at the MDA clinic in Jackson in 3.5 weeks. Much sooner than I expected, and I'm thankful for that. I talked with the coordinator for several minutes about my situation, and she was encouraging. I hope what she says about the doctor is true. I've heard nightmare stories about HKPP patients being untreated and mistreated even by their regional MDA docs. Unacceptable. I brought it up and the lady assured me that this doc will know how to treat Hypokalemic Periodic Paralysis, and is better than the average neurologist. I just pray that this is the case, because my condition has become too serious to be misunderstood or not taken seriously. I will die. I need help. I can't live in bed or in a wheelchair unable to care for myself. I don't have a "better half" to provide for me or be a support system. I have me. I have God. I have Facebook support groups who have been incredibly helpful. I have relatives putting a roof over my head and buying my groceries...I am so grateful...but they are tired and I am tired and I can't live like this. I have to be able to walk, drive, work, support myself. What other option is there for a single woman? Being independent is my life goal, and has been since I first became ill all of those years ago. So far, it has not happened...but it has to somehow.

For now, it's an hour-by-hour thing. I'm trying my best. That's all I can do. I guess that's all any of us can do, right?

I appreciate the prayers and well wishes that I have received more than you know.

Wednesday, April 20, 2011

Two Kisses For Maddy


Everybody needs to click on the photo above and buy my pal Matt's book. Because I said so. Ok not really. It's because he's an awesome daddy raising a darling child who looks just like her beautiful mother who died shortly after giving birth. Matt is a blogger who will make you laugh and cry at the same time, and I have no doubt his book will have me snorting and snotting and sobbing all over the place.

(My copy is en route, via Amazon.com)

And while you're at it, visit his charity at The Liz Logelin Foundation.

You know I support good people. Matt is one of them. Show him and Madeline some love.

Thanks for looking,

~ Kelli