Friday, June 26, 2015

Another friend gone too soon.


I've been dealt a harsh dose of perspective this week. Wendy and I attended the same church for awhile and volunteered at the same organization. My age, married with a 9 year old and a 5 year old, she just passed away of acute kidney failure.

I may be dealing with systemic disease that's leading to chronic organ failure, but here I am two states from home, slow-dancing in the living room with my 6 month old niece singing "You Are My Sunshine", and Wendy just said goodbye to her husband and children.

There is absolutely nothing fair about that.

Monday, June 22, 2015

10 Years

Divorce Day Fiesta

After nearly two years of separation, private legal servants, multiple court orders, and unspeakable amounts of stress and illness leading to organ failure and surgery, my long-awaited divorce was final 10 years ago. Despite shaking so hard I could barely speak to the judge, it was one of the bravest and happiest days of my life.

If you're in an unhealthy relationship, I urge you to love yourself enough to examine the situation and make whatever decisions necessary to bring yourself and any dependents you may have out of the darkness and into a place where you are safe and sound. People love to throw the phrase "safe and sound" around, yet many don't fully grasp the concept. Look up the words and ask yourself "does this apply to me?" If it doesn't, you've got some choices to make. It may seem impossible. It may be terrifying. But for your own sake and anyone else involved, you must stand up. Even if no one else is standing.

I've been alone ever since, by choice. While I have difficult days facing a physical handicap and serious illness solo, I came to the sad realization that I always was alone in this battle, regardless of my marital status, and I wake up every day operating in "relief mode" that I not only survived such a turbulent existence, I am more free today than I have ever been in my life. FREE. Systemic disease be damned, even it can't take that away from me.

I wish you were all here to celebrate with me. I love my friends so dearly, and interestingly enough, the majority of them are married. I take pride in being a trustworthy friend to those who allow me in their lives. I wouldn't trade these people for the world (I hope you know who you are...yes, you too).

I understand my circumstances happen to be out of the ordinary, and marriage isn't easy even when things are going pretty swell. To those who are in healthy relationships, please know I am sincerely happy for you, and I hope to God you make it.

Article: Sodium Potassium Pump & Skeletal Muscle Activity

A pretty extensive review of the NA+-K+ pump via American Physiological Society here:

http://physrev.physiology.org/content/83/4/1269

Relevant to anyone with Periodic Paralysis or other Muscular Dystrophies/Channelopathies


(Cross-posted to Fighting HKPP)

On Friendship, Love, and Heartbreak (via Brain Pickings)



Fantastic and admittedly appropriate read on friendship, love, and heartbreak. Brain Pickings is such a great blog.

People may think that just because I've chosen single, celibate life that I don't fall for people.

Couldn't be further from the truth. My feelings haven't changed a bit, and nothing is wrong with having feelings. We're made to feel.

Actions are where the problems arise.

As the article states, everybody knows heartbreak in some form no matter what path they're on. It shouldn't be so taboo to think and feel. It's all part of the human experience, like it or not. We can fight it, but ultimately we have no choice but to accept it. It's in our blueprint.

Easier said than done, but we need to allow the same grace for ourselves that we extend to others. We can do so by allowing ourselves to feel what needs to be felt in order to learn, grow, and move forward more mature than we were before.


(Cross-posted to Thoughts & Theories)

Sunday, June 21, 2015

Baby Sis


My youngest sis visited the area for the first time in 2 years.
Glad I was able to crawl out of bed to have dinner with her.
She's doing admirable things in Ypsilanti, Michigan.
Getting her Masters in Military History. Proud of her.

Friday, June 19, 2015

All the medical TMI

I recorded a video blog last night to share with you today, but for two reasons I am unable to do so:

1. It's too long to upload, apparently, since it's not uploading.
2. I was trembling so hard, it was quite frankly disturbing.

I'm not well. Let me just give it to you straight:

*My heart is stupid, in more ways than one, but mostly its irregular rhythm resulting in bouts of tachycardia (100+) and bradycardia (50). I become understandably stressed when it's up, and feel like I'm dying when it drops.
*My kidneys are pretty wrecked. I appear to have progressed from CKD to CKF. It will be discussed with Renal Clinic in late August. I'm in pain and having more endocrine-related complications than I used to.
*I have severe uncontrolled Osteomalacia, a musculoskeletal disease in adults that is the equivalent of Rickets in children. It is very painful and makes me breakable. This has been a risk for years, but medication is not working. It has been doubled, which is dangerous, but at this point we don't have a choice.
*I was tested for cancer recently after a scare. It was thankfully negative.
*Pressurized oxygen isn't going very well, but I'm having to use it anyway because I can't freaking breathe normally and it's really painful.
*My sleep deprivation remains fierce and is negatively impacting every day.
*I have permanent muscle weakness that is not being resolved with HKPP treatment, although the treatment IS helping to prevent a constant state of paralysis. I still have episodes that are caused by specific triggers but I'm not staying paralyzed like I was a few years ago, so knock on wood. Unfortunately my profound weakness appears to be here to stay regardless of my potassium level. The Jackson Muscular Association clinic said the same thing they said two years ago - there's nothing more they can do. My medications are maxed out - my body can't tolerate anymore. They're transferring me to a small clinic in New Orleans for future clinics where they will continue to document my progression.
*My decline is noticeable. My doctor and his nurse were very unhappy with how sick I looked, ordering stat labs and a breathing test as if I were in the ER. My pharmacist was so concerned by my appearance an hour ago, he asked me for details, took out a note pad and added me to his prayer list. People in public look at me like they're wondering what the hell is wrong with me. I look bad.
*I've been ordered to avoid any and all stress because of my heart and other muscles. Adrenaline is a huge episode trigger, and it doesn't take much.
*I'm having car trouble including no air conditioning. Very unsafe for my condition in general, but especially right now.
*I'm not coping with being away from my nieces. I scheduled a trip to see them but had to cancel it. I have thankfully rescheduled the trip and will be making the drive as soon as I am strong enough. I am going to apply for public housing in South and Central Louisiana while I'm there.
*When I am this sick, I become lonely to the point of depression. Anyone who knows me well knows that isn't common for me. I'm a lone ranger and a fighter, but this has been hard.

In summary, systemic disease sucks. I am so grateful to the friends who have reached out to me outside of Facebook including Facebook friends, Twitter friends, Whovian peeps, and folks I have known "in real life" forever. The emails, funny and inspirational tweets, prayers, well wishes, sweet smiles, and simple hellos have meant a lot to me, and I hope you will continue. It is challenging to live life not knowing if I'm going to exist like this for decades or if my next episode will be my last. It makes one see the world and everything and everybody in it from a different perspective, I guess. I have always lived with a sense of urgency, and I'm sure I always will. Thanks for tolerating that facet of me, especially if you don't understand it. Your kindness is not taken for granted.

If people only say two things about me after I leave this world, whenever that may be, I hope and pray it is this: nobody tried harder and nobody cared more.

Love to all.

Friday, June 12, 2015

Test results

Kelli - 2

Cancer - 0

I win again, jerkface.

Now I can focus on the rest of my failing body.

I'll talk about the kidneys later. Very sick right now and not coping terribly well. Talk to you soon.


Thursday, June 4, 2015

Today's clinic


Internal medicine clinic didn't go well.
I arrived feeling very ill, and they took me seriously.
Lab results were randomly abnormal.
Mostly kidneys.
Major concerns about my digestive tract as well. Had a radioactive test to look for cancer-causing bacteria. If it's positive, I'll have a very unpleasant road ahead, to say the least.
I'll know more next week.

Wednesday, June 3, 2015

Monday, June 1, 2015

Stop freaking out, friends.

I haven't blocked anyone on Facebook yet. My accounts are deactivated. Getting messages, emails, and hits on my blog, so I just wanted to clarify. The chances are very low that anyone reading this post will be blocked. If you are, it's most likely because you defended a child molester on my page after I specifically said not to.

I will write more later. I have to be in Jackson first thing in the morning, so I'm off to try to get a few hours sleep.