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

Wednesday, April 24, 2013

3AM Soapbox: Kindness Paranoia


Story of my life, folks. And frankly, I'm sick of it.

It is upsetting that I can't compliment some people without them acting suspicious, uncomfortable, or defensive. What on Earth is happening to our society?

It is my character to embrace people and cheer people on without an ulterior motive or intentions of any kind. It is who I am, but I've been bitter about this for a while since being treated like I was some kind of creep by a few peers who were briefly in my life. I'll never know what was said about me to cause it, but they couldn't have been more wrong and I can finally say without hesitation that it is their loss.

I've found that it's becoming much too common, though. There was a timely message on my Facebook news feed tonight about this very thing...the fact that we can no longer give compliments without people wondering what you want from them. It is a screwed up world we live in when we can't even be kind to people without them getting weirded out. Sad times, truly.

But I have decided, as my friend declared on Facebook, that I am not changing to please the paranoid. This is who I am. If you are present in my life whatsoever, you'll just have to deal with it, and please consider not making me a scapegoat for whatever your internal issues are.

Good night and God bless.

Saturday, April 20, 2013

MDA/Renal Clinic Update, Fighting, and Gratefulness

Cross-posted from The Fight Against Hypokalemic Periodic Paralysis

Hard to believe I've been blogging online for over 10 years now. It has been a lonely road with this disease, but I feel worlds better since finding others who know what I'm going through. Having a mother who has the condition but refuses to acknowledge it is not easy. Had she been willing to pursue diagnosis and treatment, perhaps we could have dealt with this together. She has made it clear, though, that she wants to be left alone. It's her choice, and there is nothing I can do to change her mind. I just hate to see her and her husband with lost quality of life as a result.

I'm forever grateful to have my aunt and uncle. They stepped in when the rest of the world stepped out. I would have never made my way to the docs in Jackson had my aunt and uncle not decided to help. Thank you thank you thank you.

I'm grateful for the support groups on Facebook and the PPA/PPI Listserv. What I have learned there has saved my sanity, if not my life. In spite of the occasional drama that rears its inevitable head, it is imperative that these support systems remain. I hope the powers-that-be realize how much they are needed.

I also can't say enough about the doctors in Jackson. I become discouraged often between visits, but I am always encouraged again after I've talked to them. Having the MDA team and Dr. Fulop on my side is a blessing that I do not take for granted. Dr. F continues to deal with my ups and downs with the utmost kindness. I always arrive to the office feeling sad, and end up laughing about something by the time I leave. God knows I find humor wherever I can; sometimes I think it's the only thing that keeps me going. I wish I could clone my doctors and send them to every hospital in the world.

My heart breaks when I think about my friends with HKPP who still can't find someone who listens or takes the condition seriously. I lived that nightmare for 20 years, and I am a broken person for it...albeit, stubborn and perseverant. When things became much more serious in recent years, I launched into "sink or swim" mode and became what my friend Katherine now calls her "snarky, loving, tender, angry soul sister". That cracks me up and makes me a bit sad all at the same time. God knows I've never wanted to be the fighting type, but I've been forced to be and it's a big reason why I'm still here. I've had some terrifying times...moments when I didn't know if I would see tomorrow. I've learned that living this way can alter one's perspective about life. I am an old soul. I'm very tired, I get cranky, maybe even angry, yes; but I'm also quite passionate, empathetic, and grateful as a result. I pray with all my heart that the latter triumphs over the former. I want everyone with this condition to never give up on finding the medical attention you need. Get angry and fight if you have to, but whatever the case, hang on to hope and don't surrender. If I can do it, I know you can too.

My appointments in Jackson went well, with the exception of my legs paralyzing half way through the day. I was in a wheelchair by the end of lunchtime (lunch was at Babalu, by the way, which was amazing). I met the CNP at the MDA clinic, as Drs Veda and Witt were out of the office. Carolyn was great. We discussed my current condition and medications, and she ordered A1C and vitamin blood work. We agreed to put me back on Vitamin D 50,000 IU weekly, as I seem to be deficient otherwise. I'm still waiting on B12 results, but my A1C already came back and it was fantastic at 5.7. This was a bit of a surprise, as I have not only gained 15 lbs over the past 2 years, diabetes runs heavily on all sides of my family. Praise the Lord, I beat the odds again. I met with Dr. Fulop and one of his students in the late afternoon. I told them about the acetazolamide, and there was no hesitation that I should remain on whatever dose I can tolerate. I admit I have mixed feelings about staying on it because, God help me, I'm such a miserable person on this drug. Nevertheless, I agree wholeheartedly that I should continue with the regimen due to the reduction of paralytic attacks. We also discussed Inspra and agreed to double it. I'll let everyone know how that goes. I return to Jackson in July.

I think I forgot to tell Dr. F about Dr. B, who has rewritten some of the scripts (perhaps he realized this, when I didn't ask for refills) so Medicaid would cooperate. They have a problem with the fact that Dr. F is in Mississippi, even though the hospital itself accepts Alabama Medicaid. Frustrating situation. Hopefully it will all work itself out. My next appointment will be at Dr. B's office in a few weeks, where we'll discuss the latest news from Jackson and take a look at labs.

I was going to tell my doctors about Alexander's death, but I knew I couldn't get through it without sobbing, so I didn't. Maybe next time I'll be able to talk about him.

Planning to post quite a few articles soon. Stay tuned.


Friday, April 19, 2013

Sweet Dreams


As I held my peacefully sleeping niece, I prayed that she would be safe and happy in the crazy, chaotic world she's been born into. I can't imagine how things will be when she's my age, but if this world still stands, I have no doubt she will be standing with it, making her best possible contribution to society. I'm thankful she has wonderful parents in John and Kayla, and even though she lives two states away, I hope she grows up knowing that her Aunt Kelli loves her more than life.


Wednesday, April 10, 2013

Purpose

Two years ago today, I was taken to the emergency room with a serious paralytic episode. I wasn't treated correctly, and it began a downward spiral of episodes that affected my entire body and could have easily been the end of me. I never fully recovered, and my life has never been the same.

I knew the condition, and I knew I was getting worse, but hoped and prayed things wouldn't get this bad so soon. My biggest fear came to pass. Nevertheless, I have to believe that in spite of this nightmare, I am still here because I have a purpose.

Regardless of my struggles, regardless of my disabilities, regardless of my pain, and regardless of my sorrow, God is in charge of the blueprints. Has been since the day I was formed, and will be until I take my last breath.

Purpose. Whatever it is, I pray I am worthy and capable of fulfilling it. I pray that my life...the good, bad, and ugly...will not be in vain.

Whatever it is, let it be done.