Friday, June 29, 2012

Thursday, June 28, 2012

Hey Look, A Spinning Head

That would be mine. I have so much to write about, but I'm overwhelmed at the moment and I'm having a hard time focusing on anything that involves something other than laying in bed trying to breathe/sleep normally.

I am doing better. This week has been fairly functional since upping my B-12 and prescription potassium. I'm having to take more than prescribed just to be able to use my limbs, and I will continue to do so until I run out. My doctors in Jackson have not returned my calls concerning my hospital stay and the need for more potassium, so I've had no choice but to raise the dose myself. It's working. Not anywhere near where I need it to, but at least I can walk to the other side of the house, eat somewhat regularly, and drive short distances without having an episode. I am still very weak and walk with assistance of a cane or crutches, but that beats the heck out of having to use the wheelchair, or needing relatives to hang on to me. Wow. Putting it in that perspective makes all the difference. My uncle said something last month that really got me thinking. We were at my brother's graduation ceremony, me in a wheelchair, and I brought up the fact that the last time I was on that street, I was walking in the March of Dimes March For Babies. It was only a few years ago when I participated and completed the 2.75 mile walk. Thought I was going to die for a week afterwards, mind you, but I did it. My uncle said "You're lucky you were able to do THAT much." I often brush off his snarky comments, but that one has stayed with me. I suppose that's the perspective I should have, eh? To be glad that I could walk for a little while? I admit I have mixed feelings, but I get the point and I don't take that window of time for granted whatsoever. I am truly thankful.

I'm also weary, but in spite of that, I seem to be coping a little better now that I've increased the potassium and B-12. As I said in the beginning of this post, I am still having trouble completing basic tasks, but I am making an effort to regroup and tackle one goal at a time. Anyone who knows me knows I'm an overachiever. I try until I crash and burn, but I refuse to stop trying.

For the next week, I hope to accomplish the following:

SSA paperwork (again, corrections) and fax
Gather clothing from my closet and dresser to donate (Penelope House or MGCHS)
Update my blogs (I am so far behind on all of them)
Email more charities about the eBook (I haven't forgotten about it)
Sterilize and learn to use the CPAP (yes, I have one...will explain soon)
Read The Perks of Being A Wallflower (a friend sent it to me...no clue what it is but will be interesting to find out)
Write an article and submit to Yahoo (I'll be shocked if I do this)
Household chores (as my muscles allow)

I visited with my mom the other day, and had a bit of a breakthrough with her. She made it known that she does care that I'm sick, but doesn't want to ask questions or know much about it. She did say that she's glad I've found a support group for HKPP, and seemed somewhat happy for me that I had a published article about it. She said I was welcome to send a copy of it to her, so I will. She also agreed to write Social Security and tell them that she will not be my caregiver. That should help them to understand how desperately I need assistance. She is very detached from the reality of this situation, still, but at least she's not being harsh and unreasonable anymore and for that I am grateful. It is a step in the right direction.

I will wait and write about my recent episode and hospital stay in a separate entry. It will no doubt be long-winded. It was a pretty scary four days. I'm trying to bounce back but even my stomach is still sore from the lovenox shots they gave me every day for DVT. Sheesh. Anyway, I can no longer keep my eyes open so more on that and other stuff later. Nighty night.

Friday, June 22, 2012

Mario Marathon 5



This awesome group of gamers plays Mario non-stop for days to raise funds for children's hospitals through Child's Play Charity. I always make a point to watch and promote every year. I love these guys!

Check 'em out and show some support! It's for the kids!

Friday, June 15, 2012

Hospital stay

I'm home after spending four days in the hospital. I had an episode that affected my upper body, including my esophagus and vocal cords. I could not speak, take deep breaths, or swallow at all. It was very stressful, and I'm so thankful that I have finally recovered from it. I will share all the details later. For now, I need sleep.

Saturday, June 9, 2012

SSA Update

I met with SSA today concerning my denial and how to proceed. The lady was incredibly kind and encouraging, and we were able to start over with the application, but keep the same disability report that I filed out previously. It turns out that I am below the minimum required work credits and therefore cannot receive disability payments, but I should have no problem receiving SSI and Medicaid. I'm now waiting for them to proceed with obtaining my medical records. I will talk with my doc offices next week to make sure they get the files to SSA as soon as possible.

As of right now, an attorney is not involved. I will contact one only when all other options are gone. So I'm playing the waiting game again.

This is a stressful time. The relative that I live with is terminally ill, and once passed, this house will be sold. I have no idea what will happen to me. I can't take care of myself. I try not to worry about it, but it's hard. I don't have a dime to my name. I'm in more debt than I'll ever be able to pay. I have no assets but a cheapo car that needs work. Living strictly on charity...at the mercy of everyone.

I'm sad, but I'm trying to find grace in the moment. Hope is alive, although at times it seems to be in hiding.

Friday, June 8, 2012

Terrible News





Sweet little miracle girl Veiyah Karg unexpectedly passed away today. She had recently gone to Disney via Make-A-Wish, and was on the heart transplant list. She overcame so many obstacles and was such a strong little girl. I am utterly devastated for all who will miss V so much.

My heart and prayers go out to the Karg family...Ani, Jeremy, Madi, and Selah.