Friday, July 27, 2012

Star Finale

Martie and I talking at her Star Finale viewing party

What a gracious and funny lady...I just love her and I'm so thankful that I was able to attend. Considering that I usually don't make it to church or local birthday parties, this was a rare occurrence. Midori the Gypsymobile and I both handled the trip well...so much better than my trip to Marietta at Christmas. I didn't have to use the wheelchair...survived on the crutches with my friend Theresa's assistance. I was able to eat and even cheer at the top of my lungs during the show. :) My body crashed quickly after we hit the road to go home (Theresa was driving, needless to say), but wow...I am super grateful for a positive experience in Birmingham.

Wednesday, July 25, 2012

Welcome To The Freak Show


Treatment as of July 2012

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


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

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

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

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

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

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

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

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

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

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

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

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

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


Sunday, July 22, 2012

TEAM ALTON, SUCKERS!

The votes for Food Network Star are in and the winner is set in stone. America will find out who wins a show tonight. And guess what? I'm going to Birmingham! YES!

I have such sweet friends. I can't make the trip on my own in this condition, but I told a friend about Martie's viewing party in case she was able to go on both our behalf. While I live on the Coast, about five hours away, she only lives an hour and a half from the 'Ham. Her response? "Not without you." So...Midori the Gypsymobile and I are hitting the road to Montgomery, and my friend will take over from there. If anybody sees this today (who actually reads this nonsense anyway?), traveling mercies would be most appreciated.

Good Lord, that's not even what this entry is about. Back on track, Rambling Rosie.

The Food Network blog is pretty entertaining. On more than one occasion, I've cracked up at the poll questions and comments that people post in response. Yesterday's was no exception. In fact, it was the funniest one so far.


Before I even saw the results, I exploded into manic cackling at the impending doom of two of the mentors which shall remain respectfully unnamed. I may or may not have said out loud to no one in particular "Oh Good Heavens, THIS is going to be BAD."
(As the audience replies in unison "HOW BAD IS IT?")

*CLICK*

*SUBMIT VOTE*



Baaaahahahahahahahahahahahaaaaa! *gasp*
HAHAHAHAHAHAHAHAHAHAAAAAAA!

Elle-oh-elle forever, Food Network. As if you didn't know.

Thanks for the laughs. 

Now give us what we want, please and thank you.

#TEAMALTON

Saturday, July 21, 2012

You're Not Gonna Believe This

I'm crazy.

Ok that's not so hard to believe. Drat.

No, seriously y'all. I might be going on an adventure! :)

Me, my crutches, my wheelchair, a ton of potassium, lots of prayers, and Midori the Gyspymobile...just might meet up with a friend and carpool to Birmingham to attend Martie Duncan's Food Network Star Finale party on Sunday.

Traveling is difficult and often out of the question for me. My ability to do so comes and goes. There will most likely (ok definitely, if I am realistic) come a day when it is no longer safe or physically possible to go anywhere. Lord knows whenever I am capable of getting up and going somewhere, I do, because I cannot stand being stuck at home. In a perfect world, I'd be an RV'er...just me, myself, and I. That is how much I long to run the roads and see the country. Wishful thinking at this point, but I can't help it...I'm a dreamer. RV'ing is still on my bucket list (I'll share that on my blog soon, actually).

But heck, this is the 'Ham! Just five hours away, and my friend would be doing much of the driving. She is also a nurse and understands my condition better than most. We've been wanting to hang out for a while now, and this would be the perfect opportunity for us. We can sit and eat and watch TV and visit with some cool Food Network enthusiasts. Wow...this is crazy. But I am so excited about the idea.

I have a feeling my family is going to flip and say hell no, but I'm going to do this if at all possible.

Wish me luck, say a prayer, send smoke signals...whatever ya got! :)

Friday, July 20, 2012

The Theater Massacre: My Thoughts

As usual, I couldn't sleep, so I gave up and got back online early this morning to find my Twitter feed inundated with the horrendous news of a killing spree at a midnight Batman showing in Colorado. A dozen dead and dozens more injured, including children, this unfathomable act was done by one man...a 24 year old college dropout who had been pursuing his Masters in Neuroscience. Being somewhat familiar with the subject due to living with Neuromuscular disease, I can't help but wonder what this young man could have accomplished someday on behalf of people like me. Perhaps he could have done great things. God only knows what his real purpose on Earth was, but it is over now. He ruined his own life and the lives of dozens, hundreds, thousands...we will never know the impact on all who are affected.

This happened only half a day ago, and I have already seen people blame theaters, blame parents for taking their kids to the theater, blame Obama, blame the "tea party", blame religion, blame the existence of guns, blame his "liberal college education", and the list goes on. I imagine by the end of the day, I'll see fingers pointed at comic books, cartoons, video games, movie makers, God, and Batman himself.

Yes, let's criticize the victims, because everybody knows there are mass murderers lurking in theaters at 12AM. People shouldn't be allowed to go die there - how irresponsible of them. That is my angry, sarcastic response to the idiotic media, who thrives on twisting everything into a conspiracy.

How about we blame the only one responsible...the guy who secretly planned and successfully executed this BS. Those who have used this tragedy to further spew their political agendas need to be punched in the face. This was a single, pre-meditated act caused by one very psychotic man. Nothing else.

I pray with all my heart for healing, comfort, and peace to the victims and their loved ones.

And I will not let one demented soul stop me from supporting the Arts.

Thursday, July 19, 2012

I'm having a love affair



...with YouTube! I had shut it down for a while because someone stole my identity and videos and was pretending to be me on a different site...can you believe that crap? Where do these people come from...Psychosville?


Anyway, I finally decided to give YouTube a shot again a couple months ago. I spend the majority of each day in bed, and returning to YouTube has been so much fun. I've been reminiscing like the sappy, sentimental dork that I am. I'm finally learning how to create playlists. When I get the hang of it all, I'll share the link with everyone on my gateway page. I am NOT ugottafriend on YouTube...that is someone else.


The video above has always been one of my very favorites. I always escape to it when I need to shut off the brain and get away from the stress of being overwhelmed. Sometimes, I put it on repeat. Whatever it takes to clear my head a bit. Love that song, and the video just makes it all the more special.

Monday, July 16, 2012

My Big Fat Food Network Star Meltdown

Alternately titled "Holy Epic Nervous Breakdown of the Year, Batman"

Credit: Food Network


If you missed my previous banter, click HERE.

First of all, I am sooooo disappointed that they didn't bring my sister-from-another-mister Emily back to the competition. SAD!!! My favorite Retro-Rad chick will have an awesome career anyhow, and she may very well end up on Food TV in the future. I hope so! Cross yer fingers, kids!

The big episode drew near. Twitter started buzzing with excitement. Alton Brown was Post-It-Tweeting the countdown (side note: if you aren't following him on Twitter, you're missing out). He admits to crying in the episode, and then follows up with a tweet implying that he doesn't do that whole crying thing. Me, being an advocate for men who have a sensitive side, decided to reply to the original tweet with my own Post-It-Tweet:


Real men cry, Mr. Brown. And don't you forget it.
Even though you're anti-man-cry, I still love you.
(But not in a creepy way...promise.)


And then, some random funny person decided to Photoshop their support for Team Alton:




And I laughed and laughed.

And then, it was time. The show begins!

And my mood changes instantly upon seeing previews of Team Alton in tears.



And I can't believe it, but I'm actually starting to feel physically ill...because this crap is REAL.



Elimination time arrives all too quickly. Michelle from Team Bobby and Yvan from Team Giada advance to the final, leaving only one spot left for Team Alton. My heart is crushed knowing that Martie and Justin won't be in the finals together. I become lightheaded and a little bit shaky.


Turns out I was unknowingly holding my breath. Ha! OOPS.

Then the powers that be surprised me by responding to my unprecedented freak-out, proving they are human.


And I felt like Eeyore when he told Pooh and the gang, "Thanks for noticing me. Even though you tried to KILL me."

(Credit: Disney)

Food Network made their painful choice. Justin was awarded a Pilot episode in the finals.

But then...

THEN...


Something so shocking happened, I almost choked and rolled right out of my sick-bed.



THEY ANNOUNCED THAT MARTIE
HAS A PILOT EPISODE TOO!
It was a dead tie!
Both Justin and Martie are in the final!!!!!!!!!!!!

HALLELUJAH PRAISE THE LORD GOD ALMIGHTY
AND BABY JESUS...YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


It was the greatest moment
in Food Network history.
Do you hear me?


THE GREATEST
MOMENT IN
FOOD NETWORK
HISTORY.


Martie is an Alabama girl, like me, and makes me so proud. Her Pilot was shrimp on the Mobile Bay for Heaven's sake. My family has been in the AL/MS Coast seafood industry for centuries. Not years or decades, mind you. CENTURIES. It is who we are. It is what we do. Martie's show would be a breath of fresh air. She's local. She feels like family. I want her to win.

Justin is the one of the most interesting people I've seen on Food Network. He is unique and gifted, and the bond between him and Alton touches me deeply for reasons I'm not willing to share publicly (I'd tell them, if they asked). What I see between them is magic, and the sky is the limit to what they are capable of together. They are the Dynamic Duo...the Batman and Robin of Food Network. I adore them, and I think they deserve to win. I told Justin this on Facebook, and buddy I freakin' meant it.

It's amazing how a televised competition can suck you in. I want so much to see Martie and Justin win. I want them both to have a show. I don't know how to convince Food Network that we, the people, WANT THEM BOTH!



But Team Alton hasn't won yet. We have to VOTE!


Vote for Martie. Vote for Justin.

As long as Alton wins, I will be happy.

Thanks to all who chatted with me on Twitter/Facebook last night! It was so intense and such a blast! Epic!


TEAM ALTON, PUNKS! GO!!!!!!!!!!

Sunday, July 15, 2012

On Romans and Writing

I reviewed the last year of my blog yesterday. It was nearly unbearable. I've come to the conclusion that I'm honest to a fault. I ramble, I'm very matter of fact, and I don't sugar-coat anything. It's how I conduct myself, but I don't always want it that way. I don't like to wallow in the mud of circumstance. I seek an oasis from reality, just like everyone else. I think it's all a part of the normal process of coping with whatever each day brings.

I had plans. Goals. Dreams. I had so many. Almost all that I've ever wanted in life has been taken from me, but I've been reminded this week that the one thing I'm still capable of is being a writer. So, I'm going to write.

I discovered recently that I fear judgment for the words I put out there. What am I afraid of? Rejection? Who isn't. Misunderstanding? Always. I've questioned over the last 24 hours if I should change what I write and the way I write it to appease those around me. Even now, this entry is not what I originally intended it to be. I was planning to make some pretty major renovations in the blog world. I was going to promise a transformation. But as I began writing, those words wouldn't come out. This, however, did. I believe there is a reason for it.

I'm going to write whatever I need to. Whatever keeps me sane. Whatever makes me happy.

I will still talk about my circumstances, and I will still be as honest as ever. It may not be pretty and it may not be popular, but I think it's important. Sometimes I want to stop sharing the ugly that is often my world, but then I get a message from someone who appreciates what they read...who says it helps them to know my struggle. Finding someone to talk to about what you're going through can be a great blessing. It has been to me. Perhaps, even life-saving. Knowing how much the honesty of others with similar challenges has changed my life, I'm learning that in spite all of the pain and heartache and abuse I've endured since childhood, by the grace of God, my story can make a positive impact. And that is what this is all about. That is what matters. My prayer is to take what life has thrown at me and prove Romans 8:28 - "All things work together for good for those who love God, which are called according to His purpose." Not just nice, pretty, happy things. ALL things. All of them.

I don't understand it, and I'm not going to try to. But I want to trust it, because it gives me hope. Hope that my life matters. I hang on to the promise with all that is in me, because it is all that I have, and all that I need to take the next breath on this spinning ball of insanity called Earth.

I don't want my life to be in vain. So, I will keep trying, I will keep hoping, and I will keep writing.

Friday, July 13, 2012

Article about chronic pain and sodium channels

I found this study to be worth sharing. I know many with Periodic Paralysis deal with pain 24/7. I can't help but wonder if those of us who have severe, chronic pain happen to be associated with SCN4A or other sodium channel mutation.

I feel it's relevant to note (not only to those with HKPP but also to the general public) that I have monitored my sodium intake over the past few years, and found that not only does increased sodium cause me to become weaker due to potassium shifting, but it also greatly increases my chronic pain level. I think it is also important to mention that sodium (as well as glucose) causes potassium to shift even in someone who does NOT have Periodic Paralysis. This process happens in "normal" people. For that reason, it has crossed my mind many times that chronic pain and chronic fatigue syndromes could be related to sodium.

I will share more at a later date, but wanted to go ahead and give you this article today.

http://www.molecularpain.com/content/4/1/37

I think I responded to everyone who emailed me over the past few weeks. If I didn't, please feel free to shoot me another email and fuss. I'll get right on a reply.

Thanks,
Kelli

FDA Safety and Innovation Act Passes In Washington

My email inbox has positively exploded with press releases about the FDA Safety and Innovation Act, which was signed by the President on July 10th. This law is vital to people like me who have rare, life-threatening conditions that are unusually difficult to treat. There are no words for how disheartening it is to know what you need to sustain your life and have it denied to you because it's not formulary, conventional, or convenient. I appreciate all who brought this Act to pass, because it may give me and others a better chance of survival.

---

FOR IMMEDIATE RELEASE - Obama Signs FDA User Fee Legislation Bringing Hope to Rare Disease Patients

EveryLife Foundation for Rare Diseases Applauds Congress for Including Provision to Empower the FDA to Accelerate Approval of Lifesaving Treatments

July 10, 2012, Washington, DC – Yesterday President Obama signed into law The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187, bipartisan legislation that will spur the development of lifesaving treatments for 30 million Americans suffering from rare diseases.

“We are thrilled the language to improve access to the FDA’s Accelerated Approval pathway for rare diseases has been included in FDASIA,” said Emil Kakkis, MD, President, EveryLife Foundation for Rare Diseases. “We wish to thank Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY) for being champions for the rare disease community.”

Stearns and Towns first introduced Unlocking Lifesaving Treatments for Rare Diseases Act (ULTRA) to empower FDA to use all the science available for allowing surrogate endpoints in clinical trials for rare diseases to determine whether a drug is working, significantly decreasing the development time and cost. Stearns and Towns later introduced Faster Access to Specialized Treatments (FAST) Act that improved Accelerated Approval for life-threatening diseases while maintaining high safety and efficacy standards.

FDA’s Accelerated Approval has been successful in getting treatments approved for cancer and AIDS patients, but has been essentially unavailable for rare disease treatments. There are currently fewer than 400 FDA-approved treatments for nearly 7000 rare diseases. Investment and interest in development will surge for rare diseases if there is access to the Accelerated Approval pathway.

“We would not have been successful if it were not for the great work of Energy and Commerce Chairman Fred Upton (R-MI), Biotechnology Industry Organization (BIO), and more than 300 patient organizations that advocated for improving the FDA’s regulatory process,” added Kakkis.

FDASIA is the culmination of more than a year of negotiations between industry and FDA and includes the reauthorization of the drug and device user fees.

The Foundation will host its fourth Rare Disease Workshop on “Developing Guidance and Policy Recommendations for Accelerated Approval in Rare Diseases” on November 15th in Washington, D.C. FDA, NIH, industry and academic scientists are invited to participate.

The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life saving treatments to millions of people suffering from rare diseases.

------------------------------------
Contact: Julia Jenkins, Director of Public & Government Relations Email: jjenkins@EveryLifeFoundation.org Phone: 415-884-0223
www.EveryLifeFoundation.org

Friday (the 13th) Funnies!



























Thursday, July 12, 2012

I Interrupt This Blog To Bombard You With Food Network Epicness

I said I wasn't gonna do it. I told myself I was not going to blog about Food Network Star.

(Credit: Food Network)



I LIED. LIED I SAY.

If you followed me last year, you know I tweeted, "facebooked", and blogged about The Next Iron Chef like there was no tomorrow. I was a total fanatic. I didn't miss an episode, and I was die-hard Team Guarnaschelli (I still am, thank you very much).

I knew I would probably watch Food Network Star, but I didn't plan to get caught up in it and I certainly wasn't going to bother blogging about it...thus sayeth me.

Girl, please. Who the heck are you kidding? That's me, talking to me. Because I know me, and I know how much I enjoy rooting for people to succeed in something. If life was fair, I would be a foster parent, child advocate, college professor, art therapist...perhaps all of the above. I emotionally thrive in seeing deserving people do well. I am a nurturer at heart...an undercover cheerleader, if you will. I may not be able to accomplish the above goals, but that's not going to stop me from being an encourager...even if that means via Twitter and Facebook while propped up on pillows between naps. It's who I am. I'm stubborn like that.

So I shouldn't have been surprised at myself for falling in love with the show. I like the "mentor" format as well as almost all of the contestants. In fact, some of them I just downright adore. Linkie grew up in Mississippi and is an amazing cake artist who I think is just darling. Ippy has a content, collected, breath-of-fresh-air character. Yvan has a contagious countenance that makes me smile so hard, I want to kiss his face. The people are so diverse...it's really remarkable. Each team most definitely reflects their mentor's personalities, and I think they all did a great job in choosing their contestants.

Team Giada deLaurentiis: Sweet & Smiley

Team Bobby Flay: Technical & Tough

Team Alton Brown: The Epitome of Eclectic


As if you didn't already know, my favorite is...




(Credit: Food Network)

TEAM ALTON, PUNKS! RECOGNIZE!


If you don't think Team Alton is awesomely unique, insanely talented, the etymological definition of outstanding, and absolutely, positively the team to beat, you have no soul.


Cristie: The first to go. I was highly disappointed, as she is from my 'hood. I think she got the shaft, and obviously I wanted to see her go much farther.

Judson: What a sweetheart, and he has a tremendous testimony to share. I am so happy that opportunities are coming his way as we speak. I think he deserves great things, and I'm glad to have found him on Twitter and Facebook. He is adorable and inspiring. I cried when he was eliminated.

Justin: Wow. What can I say about this guy? Unique, interesting, unpredictable...I think this is what makes him so fun to watch. He is a force to be reckoned with, and rightfully so as he is absurdly talented. He might as well be Alton's son. They practically have parallel lives, and they seem to feed off one another's presence. It's really been a cool thing to observe. Justin rocks, and I will be in shock and quite possibly despair if he doesn't make it to the final vote.

Martie: Representing Alabama right! Yeeeeesss! As Susie said, "she touches me so", and as Paula Deen said, "I get her". I could not agree more. I really get her. I think we could meet someday and I have no doubt I would feel like I was chatting with a long-lost family member. Food Network would not find a more friendly and grounded individual to work with. I have a lot of love for Martie, and if she makes it to the final vote (I believe she will), it is on like a chicken bone!!! GO MARTIE!

Emily: Ahhhh, where do I even begin? First of all, check out her website and watch her casting videos. I dare you not to smile. Emily Ellyn took Food Network by storm. She sucked people in with her cute, quirky ways and "flashback to the 50's" style. She comes from an artistic family (Carol Hummel is her Mama, y'all!), and has accomplished more in 30 years than most people do in 60. She seems to have the most lovable, endearing personality. If my little sister Katie was a retro-rad platinum blonde, she would practically be her twin. They are alike in many ways, and I think that is part of the reason why I embrace Emily so much. I just love her. We would totally be BFFs in real life.


(Credit: Food Network)
I heart funny people. They make the world a better place.


In a nutshell, I believe Emily is genuine, and there is no doubt in my mind she can do this. And apparently, I am not alone. Food Network fans exploded into fiery blazes of epic madness over her elimination. I'm almost certain that hellfire and brimstone fell from the angry sky. I was no exception with my first response via Twitter being "WHAT THE EFF JUST HAPPENED???????!!!!!!!!" I don't even say the eff word, so it's safe to bet that I was a tad upset. I sent my disapproval directly to Food Network, as have countless others. Sending her home for a short moment of camera shyness was the worst decision ever. EVER. EVER!!!!!!!

Shortly after, Food Network put up this poll. And the people spoke.

How many ways can one say...BAM!!!!!!!!!!!!!!!!!!!


Now we're all wondering what this means. Will they actually bring someone back into the competition? I can tell you right now that in my perfect world, they would bring Emily back and she would end up in the final with Martie and Justin. You have no idea how freaking happy I would be if they were the final three. I just might erupt into laughing ugly-sobs. It wouldn't be pretty, but it would be worth it.

Alton Brown could not have chosen a better group. Way to go, AB! You, Sir, are brilliant.

(Credit: Food Network)
You also make me swoon, but you didn't hear that from me.



Watch Food Network Star with me this Sunday, July 15th at 8pm CDT, and I invite you to chat with me about it on Twitter @ugottafriend.


Tuesday, July 10, 2012

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

This post may be TMI for non-HKPP subscribers.

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

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

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

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

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

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



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

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

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

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

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

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

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

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

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

Enter my hero - Nurse Cindy!!!

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

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

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

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

I appreciated being able to watch TV, because it retained what little bit of sanity I had left. Needless to say, Food Network kept me company while I was going through this horrendous ordeal. Alton Brown even had me silent-laughing at one point, like Muttley or something. God bless ya, AB. I heart you bunches.

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

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

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

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

I will follow this ungodly-long entry with a (short!) video blog to recap the medical specifics...what didn't work, what did, dosages, etc. I will also share my concerns for the future where episodes, my breathing, swallowing, and Advance Directive are concerned. I know people have been wanting to know the details of my time in the hospital, and I'm sorry I'm late in posting about it. I hope all of this is helpful to someone. If you have any questions or comments, please follow this link to my HKPP blog, where you will find the same post. Comments are open over there.

Or if you prefer privacy, email me at ugottafriend4life@gmail.com. Everything is confidential, always.

Friday, July 6, 2012

Dear Child of the Night

I have a tracker on my charity blog that shows me the path in which someone found it. This lets me know where people are coming from, and sometimes why. I think it's important for the purpose of networking, to know what kind of audience is out there and what they're looking for.

I woke up from a nap, and found this:


My heart aches. Someone from Thailand clicked on this blog entry after a Google search concerning recruiting young people in joining him/her as a "child of the night". Thailand has an extremely high rate of child prostitution and trafficking, and my blog was found because I promoted Children of the Night, a non-profit organization that rescues young people from the chains of child prostitution.

This search disturbs me deeply...there are no words. However, I have to say I am glad that my blog was the #1 search result. Imagine what it could have been: recruiting tutorials, trafficking sites, child porn? Instead, this person found my little bitty blog first. I think that's definitely a God thing.

To all children of the night, I would beg you to realize your true value in this world. I would tell you how God created you to be more than what you have fallen into, and that you do not deserve to suffer from an unspeakable life of torture, shame, and pain. I would urge you to seek a safe haven...somewhere...anywhere...and escape to a new future. You can do this. You are strong. Love yourself enough to get away from this vicious cycle of abuse. Break the chains. Do it for you. You are worth it.

I hope and pray the child who stumbled upon that blog entry read about Children of the Night, and is miraculously no longer moved by fear to recruit, but somehow finds the courage to be free.

Friday Funnies 7-6-12





























Tuesday, July 3, 2012

Wonderful, wonderful news...



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

As it turns out...




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

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


Monday, July 2, 2012

Darth Kelli

I can hear my friends and family now. The Darth Vader jokes will start flying when I tell them I have a CPAP system.



I'm incredibly grateful to the complete stranger who offered his CPAP machine to me. I brought it up on the Mobile, AL and Mississippi Coast Buy-Sell-Swap groups. I knew it would be a ridiculous long shot and I felt somewhat stupid for even saying "Hey, I need a cheap or free CPAP"...as if somebody would just have one lying around. Well, he did. My aunt took me to Theodore to meet him. He gave me the entire system and even a carrying case. I'm sure it's worth several hundred dollars, if not in the $1000 range. I could not thank him enough.

Then a friend that I grew up with heard. He packed up his extra supplies...masks and all...and brought them to me while he was visiting the Coast from Tennessee. Seriously, how lucky am I?

I haven't tried to figure the thing out yet, but I will soon.

It's definitely a bit freaky looking, and I'm pretty horrified by the fact that I need this already in my mid-30's, but I'm hoping it won't be that bad to get used to. Whatever it takes to be able to breathe again while laying down, I guess. Breathing is pretty important, right?


Good thing I'm single...