Thursday, February 28, 2013

Rare Disease Day 2013


                          Show awareness by spreading the word.
                        Learn something new about a rare disease.
                      Offer support to someone fighting their battle.


Monday, February 25, 2013

Baby Zoey & Extended Stay in Louisiana

Doing what Aunt Kelli does best - harassing baby cheeks

My precious little punkin, Zoey, is in NICU at the moment. She was fine the first 24 hours after birth, but then her sats dropped out of nowhere. The situation was resolved, but her O2 is not stable while she's sleeping.

Apnea is suspected, so they will conduct a sleep study Tuesday overnight. It could be Friday before the results come back, and she could spend another week in NICU after that while treatment is discussed and put into action.

This has been unexpected, as Zoey's vitals were spot-on at birth. Born a couple weeks early, but the doc admits to possibly being a bit off on the due date. She was 7.5 pounds and 20 inches. Perfect. We do realize our family has a history with sleep apnea and sudden infant death, and that has been made known to the medical staff. My brother and sis-in-law are understandably very upset, but I admire their strength more than they know. They are amazing parents, as I knew they would be.

I intended to only stay in Louisiana two nights, but I've been here since the 19th and will be staying through March 2nd. I appreciate my brother for letting me live on his couch this long. I've done my best to stay out of the way and help out as much as possible...rolling walker in tow.

Pray for Zoey. She's the sweetest thing in the world and I love her so much.

Wednesday, February 20, 2013

OPERATION ZOEY IS COMPLETE!!!!!!!!!!!!!!!!!!!!!


Thank you God for letting me live to meet my
sweet, beautiful, perfect niece,
and thank you for the privilege of being her Aunt Kelli.


Monday, February 18, 2013

Local Clinic Follow-Up

This is a medical post and may contain TMI. Fair warning.

I finally returned to the local clinic and saw Dr. B, who ordered the heart monitor for me last month. The results were exactly what I was expecting. Yes, I'm having some arrhythmia. No, there's nothing that can be done about it. So that's the end of that. Quick and painless, I suppose. I'm so glad to be off of the monitor because that thing was driving me absolutely batty.

We spent a good bit of time discussing other things. The aggressive treatment I'm on, the side effects, and the fact that I'm needing a local doc to take over my care...mainly script-writing. Now that relatives have stepped out of the picture where my medications are concerned, I'm up a creek unless Medicaid agrees to pay for everything. I literally don't have the funds to pay for any of it.

I have yet to successfully titrate the acetazolamide to the dose Dr. F wanted me on, but I'm still trying and I'm not going to give up. I am encouraged by the fact that I am no longer waking up in a state of paralysis. Yes, I still have paralytic attacks regularly...some of them serious...but I used to wake up paralyzed every single day. Since getting the acetazolamide in my system, that hasn't happened. That's a good thing, and in spite of the fact that it isn't improving my general weakness, and the side effects are very difficult if not unbearable at times, the conclusion is that I need to stay on this drug. I'm also still on everything else, and I'll write a separate post about meds and side effects later.

Dr. B is concerned about my kidneys, so he ordered a work-up and gave me a month of samples of Detrol to deal with some bladder issues I've been having. I've also been dragged against my will into an OBGYN appointment...boooooo! I don't want to go, and the nurse said they can't force me to, but they really want me to and gave me an appointment whether I liked it or not. Ha. I'm sure I'll be canceling that soon.

The great news is that he had no problem agreeing to rewrite all of my scripts. They've been turned in, and I will find out tomorrow whether or not Medicaid is going to cover them all. Pray hard, brothers and sisters.

I appreciate everyone's thoughts and well-wishes, always. You are all a tremendous blessing in my life.

Tuesday, February 12, 2013

Random Encounter

A young lady approached me in public recently, and we had a remarkable conversation about my condition.

Her questions were bold and honest, and she is the first person who has ever asked me if I'm scared.

Really caught me off guard, and although I think I stumbled on my words a bit, I loved the conversation and we both wished it could have continued.

She said she was inspired and thanked me for answering her questions, and I replied that I appreciated her time and genuine inquisitiveness.

We went our separate ways with feelings of gratitude for what was such a random encounter.

Sunday, February 10, 2013

How I obtained a bag of oranges that I don't want.

At an itty bitty local fruit stand in my itty bitty town:

Him:  Young lady, how can I help you?
Me:  I only have a little bit of change with me, but was wanting to buy one orange if I could.
Him:  An orange?
Me:  Yes sir, just one.
Him:  Okay.

*proceeds to dump a basket of oranges into a bag*

Him:  That'll be $3.00.
Me:  ...I only have a little bit of change. I may not have $3.00 but let me see...

*digs around purse, counts $3.00 out loud, gives it to him*

Him:  I guess that'll be close enough right there.
Me:  Um, it's $3.00 exactly...

And that is how I obtained a bag of oranges that I don't want. The end.

Thursday, February 7, 2013

Operation 2013


I use the heck out of digital stickies.
It's like when I was an office administrator
and had post-its all over my desk,
only now it's my laptop that's covered.


The word of the year is OPERATIONS.
Design & Execute is the name of the game.

The last two years have been a poor reflection of the person I truly am, and I've been pretty depressed about that. In spite of my current challenges, I am determined to become as together and accomplished as I once was. So, I've written short plans for what I hope to achieve in 2013. Having those plans "on paper", so to speak, in front of my face, will help keep me on track. Here are my top five "operations" in progress:

OPERATION ZOEY

My adorable sisters Kayla and Zannie
(I'm the old, sick, swollen lady on the left)

If you haven't been following my blog for the last 7 months, my brother John and his wife Kayla are expecting their first child. I couldn't be happier for them! I am bound and determined to make the trip to middle Louisiana to meet Zoey Marie in a few weeks. I've been practicing driving around town for extended periods of time, and I think I'll be okay as long as I stay on top of my potassium intake and be careful with food and weather conditions. Having the rolling walker this time around should be helpful. I may have to break up the trip between two days, even though it's only a 6.5 hour drive (one way), but we'll see. My main concern is money. Although I don't at the moment, I will hopefully have enough cash to get there and home in one piece when the time comes. It is extremely important to me that I be there.


OPERATION GRUB

I longingly await for Summer so I can find beautiful strawberries
which are, of course, a most excellent vehicle for chocolate.


Learning about food over the past few years has been quite the adventure. There are several things that I want to try to make this year, and I want to really nail them. Salad dressing, quick dill pickles, and salsa to name a few. It's amazing how much I have learned just by watching Food TV. My steak is wonderful, and I finally got my French Onion Soup right where I want it. Lately I've been watching a lot of Good Eats (yes, I'm talking about Alton Brown again...sue me), and while I've seen several episodes since its debut in '99, it seems like it's really sinking in this time around. It has been nice to relive some of AB's instruction and feel the light bulb above my head come on. GE "the early years" has whisked me back to my early 20's (a time when I didn't cook, because I had no kitchen), and I recall watching that cheeky young man talk to me through the holes of his Costco shopping cart and thinking "Gosh, he's pretty. And he seems to really know what he's talking about too. I should probably pay attention to this show because I'll need it someday". Alas, someday wasn't until much later, as I was divorced and in my 30's before finally having free reign in a kitchen of my own. I have a modest setup (a slow cooker, 2 electric burners, and a countertop oven, ha) but I'm sure thankful for it. I'd be even more thankful if I had the muscle power to cook every day, but I do well to cook once or twice a week. I'll take whatever I can get, though. I'm grateful.


OPERATION ORLANDO

In mid October, the Periodic Paralysis Association in partnership with Periodic Paralysis International will be holding a conference and free genetic testing in Orlando. This will allow me to meet many others with Periodic Paralysis, hear about the latest news and research, find out how to participate in studies and surveys that will benefit the Periodic Paralysis community, learn how to survive and cope with the disease while striving for the best quality of life possible, and receive free genetic testing by the top Periodic Paralysis researcher in the world, Dr. Lehmann-Horn of Ulm, Germany. This trip will be very expensive, and it will take help from others to get there. I have friends who have set up a ChipIn for me, and a wonderful friend whose family is sponsoring a portion of my trip. I'm almost half way to having 100% of the funds needed to accomplish this, and I am speechless to the point of tears over such thoughtfulness. Thanks will never be enough.

Side Note: I received an email today that ChipIn is shutting down, so the donation page will self-destruct at the beginning of March. If you have any questions, feel free to email me.


OPERATION POUND

Oh, the Yo-Yo of a life I lead. My bathroom scale changes with the tide, it seems. I've been down about my weight and I desperately want to reach my goal size again. I'm not sure how that's going to happen, but I'm not giving up without a fight. I have no choice but to factor in the Muscular Dystrophy. My inability to exercise, high protein diet, and loads of heart and kidney medication have me as swollen as a hog at a free slop buffet (snort). The failure of the muscles can result in the loss of said muscles, either in lack of muscle tone or increase in swelling and fatty tissue. Since 2011, this seems to have gone both ways for me. Some areas are lacking, others are a blob of horror. Most foods are not safe for my condition now that it has progressed into the danger zone, but I am not allowed to not eat, so every day is a Catch-22. Choose your weapon. Expect the worst, but hope for the best. And hope I will. I'm a stubborn girl...I have to be. So I'm on a mission to lose 16-25 pounds in 2013. Wish me luck. I need it.


OPERATION ORGANIZATION

[Insert appropriate photo of organized loveliness here. I don't have one, because there isn't a room in my house at the moment that qualifies. By all means, call FEMA and have me declared a disaster area. Send help. Or better yet, send money.]

Once upon a time, when I kicked butt in the corporate world, my law and medical offices ran like fine-oiled machines. They were awesomely organized, singlehandedly executed by yours truly.

Then my condition relapsed, and I was forced to resign from all of my jobs. I picked up a paint brush to save my sanity, returned to college to pursue a dream, and my office skills went to hell on a jet plane. It's as if my psyche went on vacation, and my left-brain took a wrong turn at Albuquerque.

So...time to crack down on this chaos. As my health permits, I am organizing my life in every way possible. From my laptop to my storage room...I want it all to make sense. I've already put a dent in this goal as of December, but I have a very, very long way to go. I am not able to do much, but I'm getting little things done here and there and I know it will eventually add up. I at least want to have the house organized soon so that moving will be easier when that time comes. I haven't mentioned this on the blog yet, but I'm going to be moving out. I'll elaborate on that later.


My God, I'm long-winded. No wonder I suck at Twitter.

Love y'all.