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.