Saturday, July 27, 2013

Operation 2013: Operation Organization Update


It seems to be taking forever, but I'm finally making huge progress in organizing my life. You would be shocked to know how much I've gotten accomplished in the storage room this week. I assembled bookshelves Thursday and Friday, and moved all of my school textbooks and VHS tapes there. That's right...VHS, kids! My arms and hands paralyzed after the effort, as I expected, and they're still weak over a day later, but I don't care right now. I'm just glad it's done.

Now I'm going through my old belongings...stuff from years see what I can throw away, give away, sell, etc. I want to take as less as I can stand to wherever it is I'm moving to eventually. Since it will be a section 8 apartment, I don't expect to have room to store much. No earthly idea what I will do with all of my Bob Ross style paintings yet. There are dozens that I need to find homes for. I also have big boxes of clothes for Goodwill, but no clue how I'll get them there.

I'm pleasantly surprised at what I've found in boxes that I thought I lost in Hurricane Katrina. Thankfully, some things from my childhood and teen years were boxed up and in my aunt's garage. This is what I'm looking at now. I forgot I had so many books. A few collectibles made it through the storm as well. I'll take pics soon so I can show you some of this stuff. Stay tuned.

Monday, July 22, 2013

URL finally working?

Hi all, just wanted to mention that my URL at was down due to user error (big fat surprise), but it should be up and running fine now. As always, you can reach this blog via Google Blogger at, but it is supposed to redirect to

For future reference: if you try to get here via and it does not work, please feel free to let me know at and I will check things out.

That's all I have for now. Talk to ya soon.

Saturday, July 20, 2013

Monday, July 15, 2013

Renal Clinic July 2013, and Circumstances

I'm frustrated about my latest appointment. I was doing okay until the nurse discovered that my Inspra script wasn't filled correctly, which means I've been taking much less than I what I was prescribed. I have no idea how it happened, but I'm so mad at myself for not noticing that the dosage was wrong. With a migraine and running on 2 hours sleep, this news derailed me. Dr. F wants me to titrate the Inspra, so the script was rewritten for less than what I would have been on, and Medicaid doesn't pay for it so I have to take it to my local doc office and apply for patient assistance. That will take another several weeks. I'm upset that I'm going to lose another 1/3 year (next appointment is in 4 months) of potential quality of life that I could have gained had the script been correct to begin with.

I am so grateful to friends for getting me to the appointment on such short notice. Finding a way to Jackson is getting harder, and it is extra stress that I don't need. I have an ultrasound on the 24th with no transportation as of today.

Dr. F wants me to start using the Cardy meter regularly again, so I'll have to invest in the calibration solutions soon ($88 plus shipping...ouch). My potassium continues to fluctuate daily.

Although my weakness is profound, everyone said I'm doing better where the paralysis is concerned, so I'm trying to slap on a smile. I met a new doc in training (Dr. H), and he was nice. He agreed that I basically have to choose my own poison. I can follow a muscular dystrophy diet or a kidney disease diet. They contradict each other, so it's a no-win situation. He's not familiar with Primary HKPP and I wouldn't have expected him to be. No big deal. He and Dr. F both seem like sweet people, and I'm thankful they are trying.

I wanted to bring up several things, but I didn't go through my list at all. By the time three doctors were in the room, I just wanted to go home. I came across as obnoxious, I think, although that is never my intention. I'm just tired, agitated, in a lot of pain, and understandably afraid of my future as a single, disabled, chronically ill woman with no income and no relief in sight. I'm a level-headed person, but Grace has never been my name, and it probably never will be.

I'm going to talk to Social Security soon about any possibility under the sun of finishing college online through federal financial aid. I expect them to say no, but I want it in writing. To be stuck here unable to care for myself, watching life waste away, relying on people around me for everything is not living. I don't have a prayer if I don't figure out something.

I'll continue open courseware regardless. I've downloaded some courses from MIT and I'm diving back into Psychology, Social Studies, and Art Therapy as soon as possible.

I will never accept the way things are at this moment. I will continue to fight for a life worth living.

Tuesday, July 9, 2013

Systemic disease does not comply

I really should have known better than to schedule a week of cooking. In my stubborn mind, I think I can do it, but my body always proves otherwise.

There's a good chance that I'll have to ditch the kaiser rolls (carbs and sodium are a problem), but in some form or fashion, I'll resume "burger week" as soon as I can. I've been down for the past several days. It's a good thing I do some bulk cooking sometimes, because there are days when having leftovers in the freezer is the only reason I eat.

Renal clinic is Thursday in Jackson.

Thursday, July 4, 2013

To the many who are referring to "murica" today...

...your friendly neighborhood spellcheck.

Y'all driving me cray cray with that 'merica 'murica mess.
Love you anyway, weirdos.

I'll be back in a few days to catch up on the blog, mainly burger week. My nieces are in town and I'm trying to spend time with them before they leave. They're growing up so fast.

Hope everyone in AMERICA is having a fabulous 4th. :)

Monday, July 1, 2013

Burger Week - Day 3: Spicy Sloppy Joe

Ingredients (serves 2):
2 Kaiser rolls
8 to 10 oz ground beef
Kosher salt to taste
Fresh cracked peppercorns to taste
1/2 Chopped yellow onion
1/4 Chopped bell pepper (any color)
2/3 cup Ketchup
1 tbsp White vinegar
1/2 to 3/4 tsp Chili powder to taste (preferred heat level)
2 tsp Turbinado sugar
1/3 cup Water

Man, was it good. Careful with that chili powder! :)