Saturday, April 24, 2010

Finals Week

It's crunch time. And it has been a very, very, VERY difficult semester.

I am in bed most of the time...not in good shape.

One more week. I can do this.

Then a new chapter of life begins.

Pray for me, please?

Will elaborate later.

Wednesday, April 21, 2010

Honest Scrap

I've been nominated for the Honest Scrap award by my sweet friend Sarah in India. Sarah runs Sarah's Covenant Homes and cares for orphaned, special needs children. She is one of my heroes. I hope to be well and financially able to visit her and the children someday.

My heart is heavy for Sarah right now, as she just lost two of her beautiful children...Elizabeth and Evelyn, within a week of each other. And last I heard, several other children are in the hospital with various illnesses. Dear Jesus, please help these children, Sarah, and all of the caregivers as they walk through this incredibly difficult valley. I absolutely cannot imagine.

I urge you to visit Sarah's blog and pray for them. See what you can do to help.

Thank you.

And now...ten (VERY) honest things:

1. I have social anxiety, frequent nightmares, and a startle reflex...a few symptoms of post-traumatic stress disorder. Not sure what to do about that.

2. I am thankful every day that I didn't have children with my ex-husband, yet heartbroken beyond words that I will never have children at all. In spite of that, I rejoice with complete sincerity when I hear of a new birth or pregnancy, because babies are the most wonderful people on earth and their very presence brings me joy that I can't even explain.

3. As relieved as I am to be happily divorced, I am finding myself having feelings for the opposite sex again after seven years of feeling nothing. I am having a hard time processing that, and at the moment it hurts so much that I would rather go back to feeling nothing again.

4. I don't share nearly as much about my health as people think I do. As a teen (and before my diagnosis), I was labeled a liar by family, friends, teachers, and doctors, and I guess I've never gotten over that. There have been days and nights when I've felt like I was going to die, but I didn't tell anyone because I was afraid that they wouldn't believe me.

5. I was traumatized by watching my grandmother, who was the greatest person I've ever known, suffer and die the way she did. It changed me and I fear the same fate.

6. I am a very open-minded, tolerant person who gets along with darn near everyone. I am a peacemaker, and it takes something pretty significant for me to remove myself from certain people and/or situations. It is always hard even when I know it is the right thing to do.

7. God has occasionally given me visions, dreams, and insights into my own life as well as other peoples' lives. I've had dreams of events in detail that have come to fruition. I've been able to tell someone how they were feeling, what they were worrying about, etc., without really knowing them or their situation. Sometimes it seems like I can feel their burdens as if they were my own.

8. I desperately want to be physically and financially independent. It hurts to have to rely on other people to help me get by and I feel like a burden to them. I am mentally capable of much and I have proven that, but I am physically unable to hold a full time job. God knows I'd be working if I could. That's why I am continuing my college education, although at times I don't see the point as I don't feel any hope of making it on my own whether I have a degree or not.

9. I get very attached to some people. But not in a creepy way. :) I'm the safest person I know. It is my character to embrace others and strive to never take them for granted. It is a work in progress and I pray that I will be a better person each and every day. I just want to be a friend to world and somehow, in some way, make a difference.

10. The older I get, the more I realize how different I am and how abnormal my life has been. It is surreal, depressing, and intriguing all at the same time. It makes me wonder why I was chosen to walk this road, yet it makes me count my blessings. It makes me seek a purpose for it all.

Saturday, April 17, 2010

Health and Meds Update

I saw the doc last week and she agreed that I needed to switch from K-chloride to K-citrate due to the chloride causing severe side effects (see below) and not adequately correcting my condition(s). Unfortunately, she got confused and wrote the prescription wrong. After my pharmacist harassed my doc office for three days, they FINALLY corrected their prescription error and I started on new meds yesterday (HORSE PILLS...potassium citrate 1080mg, up to 3 a day). This is supposed to:

A) deal with my kidney stones...been having significant flank/UT pain off and on since December
B) bring me out of renal acidosis...I will start monitoring my pH again in the morning
C) bring me into recovery and eventually maintenence mode with the Periodic Paralysis
D) help prevent further atrophy of muscles and cartilage due to the previous meds (potassium chloride)

Currently dealing with several pulled muscles and tearing cartilage (I have a history of this) and it is very painful, but I am praying that I'm on the road to recovery again now that I've switched from chloride to citrate. It was a beautiful day today and I got quite a bit of walking in despite the pulled/torn cartilage in my chest and back.

For the pulls/tears, the doc put me on Valium and Propoxyphene temporarily. It takes FOUR HOURS for the stuff to kick in, but once it does, I do get a few hours of sleep. I think this has been the main reason why I have been able to handle more physical activity during the day over the past couple of days. I have to curl up in a fetal position with the heating pad to tolerate the pain when laying down to sleep, but it's working fairly well since taking these meds. Four to seven hours of sleep over the past couple days vs zero to three hours like I usually get has made a big difference. Just wish I could achieve this nightly for the rest of my life and I would be more functional...maybe even human. :)

So for the few of you who are keeping tabs (HKPP patients and whoever else cares), the med list:

1) K-citrate 1080mg 2-3 times a day
2) Slow Magnesium chloride...you can buy it OTC at Walmart now...1 a day when I remember
3) Avapro 150mg 1 a day for heart, BP, and kidneys. It is extremely sensitive...if I forget to take it or get off the exact schedule, my body lets me know!
4) Flexeril 10mg at night. This is on hold until I finish the Valium...then I'll be back on it. Flexeril is a very weak muscle relaxer (or at least it is for me) so my body tolerates it well and keeps my body from spazzing out so much...not as much as I'd like but something is better than nothing. Those with HKPP know what I mean by spazzing out. Like full body muscle spasms, but sometimes worse.

The Propoxyphene is temporary. I only take pain meds when something major is happening like this torn cartilage...a kidney stone/infection...migraine...surgery, etc. When it comes to the 24/7/365 overall body pain that I live with...tough luck. With systemic disease, chronic pain is inevitable, but I'm staying away from heavy pain meds for as long as I can possibly stand it. I hate taking meds.

I am praying that the K-citrate will bring me back in maintenance mode so I can start exercising and using my neuromuscular stimulator again. I've been very depressed about not being able to go to the gym, even though all I'm capable of is 10-15 minutes on the treadmill and a few leg presses. It is something that I look forward to and I hope to resume that routine soon. I have gained a ton of water weight due to the meds and there's nothing I can do about that, but I still intend to manage my body fat as best as I can. I guess I'm hoping by some miracle that I'll lose weight regardless of the meds.

Time for my English final exam...catch ya later peeps!

Thursday, April 8, 2010

Rolling back down the hill...

I am seeing a significant decline in my condition again. Doc appointment scheduled for Monday but I don't know if I have the funds. They want $100 minimum upfront. I've got to find a way, though, because the heart/muscle/kidney meds are just not keeping up like they should, and I'm experiencing some pretty disturbing side effects on top of it. I'm crashing fast.

Prayers are greatly appreciated. I can't tell you how this makes me feel. I have no appropriate words right now.