Tuesday, June 28, 2011

Tough times

It has been nearly 3 months since my big crash. After years of working my butt off yet never making enough money to make ends meet, I have never pursued public assistance (with the exception of college grants) until now.

As I said in my last update, University of Mississippi Medical Center approved me for 100% financial aid. The task now is to get rides up there every time I need to go, and to get lucky enough to have a team of docs who listen and try till death do us part. All prayers concerning this matter are greatly appreciated.

I am in my 30's, I am intelligent (for the most part...Mathematics, you suck), and I have acquired a great deal of job experience in spite of my severe physical impairments. I've run law offices - worked in hospital administration, real estate and insurance - handled fifty line switchboards - negotiated with clients and attorneys - budgeted hundreds of incomes - been a desktop publisher - proofread, edited, and created hundreds of legal, medical, and other documents and business letters - controlled all aspects of a commercial print shop (complete with 4-tray darkroom, no processors in my day, people...I used chemicals to develop negatives and aluminum plates, used manual printing presses, and hand-collated tens of thousands of books) - taught all ages in public and private schools (various subjects) and now I run my own art instruction business. That doesn't include my volunteer work. Hello, ten page resume of chaos. Ha! Unfortunately, the reality is that I am incapable of working outside of my sick bed at the present time, and that doesn't appear to be changing. I hope and pray to God that it will change, but for now, it's not. Through all the years of struggling and being sick and losing jobs due to my body crashing, I have never received public welfare, but now I am. I don't see where I have a choice, and my case workers (I have one in Jackson, and now one in Moss Point) agree 100 percent.

I met with the DHS today, where I applied for EBT. They gave me an emergency appointment. The lady knew by looking at me that I was not capable of applying for unemployment or getting a job, but had to ask "Have you refused to work?" "I'd LOVE to work!" I told her, and we both laughed. I gave her a copy of my diagnosis and my most recent doctor's report, as well as my pitiful 2010 tax return. She filed my info and approved me on the spot. She said that she would make sure that my money is in the system within 6 days. She explained how the card worked and encouraged me that it "wasn't so bad". I didn't cry, but she knew that I wanted to. She carried my paperwork for me, showed me to the door, and wished me well.

I am lucky that relatives have helped me survive thus far, and I will never take that for granted, but I am in the process of locating medical records so I can apply for SSI Disability at their request. I am seriously ill at this point, clearly unable to work, and I put this off as long as I could. I hoped that I would recover enough somehow to work again as I did several years ago, but that would require a miracle now. And I know that sitting around with zero income waiting for a miracle is not reasonable, regardless of the fact that God is able to make it happen.

My difficulty with doing all of this has nothing to do with pride, but in being told that I'm entitled to it because I cannot take care of myself. Entitlement is a state of mind that I have a hard time grasping. I want so much to be a "normal" independent adult and a productive member of society. I have always wanted that more than anything in the world. Perhaps it is because I was raised that way. My mother, brother and I lived in poverty, but never asked for a handout. My mother's income was carefully spent, and I learned how to manage money, to the last cent, in my childhood. I've always heard nothing is free...earn your living...be responsible...make it happen on your own. Good advice, and although times were often very tough growing up, I appreciate what I learned as a result.

But the reality is that I am going to die young if I don't receive real, regular medical care. I am going to stay sick if I don't have access to the right foods and medications on a daily basis. And while I cannot live on the SSI Disability that I would receive if approved, I will surely not make it with nothing at all.

It's just the facts. My head is not in the clouds. This is my reality. I hate it so much. I don't know if I will ever accept the hand I've been dealt, but tough times or not, I am doing the best I can. And I always will.

God help our children

America, allow me to introduce you to REAL "reality TV". If you are in a position to help someone, please don't pass them by. Each one, reach one...if at all humanly possible.

Saturday, June 25, 2011

News of the week

Got the approval letter from University of Mississippi Medical Center for 100% financial assistance. Now to get back up there in August and get some help. In the meantime, I have a local appointment next Friday. Perhaps I can at least get some advice and/or tests until I go back to Jackson.

I managed to drive to Mom's to pick up mail, which is good news. She had to bring it out to my car, though, because I was too weak to get out and go inside. It was hard enough just getting home and getting through the house to my bedroom. I hope to see some major improvement soon so I can have quality of life. I still can't use my muscles much at all without a decline so I have a very long way to go.

I sold a lot of my art supplies...sad but a blessing as the money was greatly needed. I will use part of it to purchase a Cardy-Ion Meter, which is a device that monitors potassium levels. It isn't easy to use but I'm going to learn how to use it. I think at this point in the progression of this disease, I'm crazy for not owning one. It's a whopping $250, but hopefully it will be worth it.

I've decided, though, that as long as I don't get any worse, I'm going to return to school part time, strictly online, in the fall. I hope I don't regret it.

Tuesday, June 21, 2011

Good days and bad days

I guess you could say I'm at a stand-still, although as always, a roller coaster...if that makes any sense. My days are overwhelmed by nothingness most of the time, with the occasional change in routine that I welcome if it's anything other than a decline. Friends came to visit me yesterday and that was such a treat. I love my peeps and I'm glad that I was able to get out of bed to see them.

With the HKPP, I'm having ok days and not so ok days. I'm still using two canes and muscle activity is extremely limited, but some days I'm managing to get a few things done around the house. Mostly making simple meals with help of a bar stool that I borrowed from a friend so I can sit at the kitchen counter. My stepdad bought me a crock pot (on Father's Day, he is the one giving ME gifts...what is wrong with this picture? And can I keep him?) and I think it will make life a little easier. I look forward to trying it out later today.

My diet has been limited even more than it was before. I was already on a moderate glycemic, moderately-low sodium diet, but now I'm on a VERY low sodium diet (zero sodium when possible) and only enough sugar to keep my blood sugar levels up enough that I don't fall out from Hypoglycemia. It has been quite the task finding low/no sodium foods, but I feel like I've done pretty well through research and online stores Healthy Heart Market and Spices Inc. I've also been surprised to find that Walmart carries more "no salt added" canned products than they used to...things like tomato sauce, which I use often. I'm so grateful to have plenty of groceries in the pantry and freezer right now, thanks to my mom and stepdad who have come to my aid during this time. I'm very grateful for that and don't take it for granted.

I'd be dead if not for my aunt and uncle, who are helping me with all of the medical stuff. They have saved my life time and again, I truly believe that. When I didn't have anyone else, they were there and I will never forget everything what they've done and continue to do for me. I have a roof over my head and doc appointments only because of them. As for these appointments, University of Mississippi bumped my Nephrology consult to August 18th. CRAZY and not acceptable as I was doing very badly a few weeks ago, so I saw my primary physician in Mobile on June 1st and she referred me to University of South Alabama Nephrology June 30th. I'm sure I've already mentioned this but I'm too lazy to verify that, so I'm typing it out again. That's 10 days away and it can't get here fast enough. I hope and pray to get some help. Somehow, I've got to get on my feet again. I have cabin fever bigtime. I can't wait to be able to drive and walk and function in general again.

I've had some semi-good times, meaning that I'm slightly more functional. My heart and esophagus issues are better some days than others. Still on two canes, but maneuvering around the house and doing some basic tasks. I finally managed a little bit of laundry (although it's not put up...still sitting in baskets all wrinkled...oops) and dishes are occasionally washed. I've also done art inventory and put up a ton of supplies for sale over the past week, most of which have already sold...YAY! What a blessing. That money is desperately needed, and it will be going toward my medications which are absurdly expensive. I also plan to purchase a Cardy-Ion Meter soon, which will allow me to monitor my blood potassium levels at home. I hope it will be very helpful in managing this condition, as right now I'm simply flying by the seat of my pants wondering if popping all of these potassium pills (doc has prescribed 80MEQ a day + extra PRN) are doing me enough good. We'll see...

Anyway, it's 5AM. I had to take another round of potassium and sit up for half an hour, so I figured I would give an update. Laying back down now...talk to you soon.

Tuesday, June 14, 2011

Monday, June 6, 2011

Exhausted Video Update

(June 10 - Oops, this vid won't be available while I've deactivated my Facebook account. I'll be back soon, and the video will return with me. Sorry 'bout that!)

Wednesday, June 1, 2011

Today's Doc Appointment

I could barely swallow by the time I got to the doc today. My esophagus is weak and feels like it's caving in. I can't lay down and can't even yawn without it trying to close up, causing me to gag and cough. My chest is killing me, and the rest of my body hasn't changed much. Walking with two canes sometimes and in a wheelchair when out and about. Dr. J was very unhappy and quick to give me a referral. Nephrology appointment at University of South Alabama June 30th was the soonest they could give me. Sooner than the appointment in Jackson, though, so we'll see what happens.

Meds have also been switched back to slow potassium citrate at (MDA Neuro) Dr. V's suggestion. The dosage was doubled, and fast potassium is PRN. Citrate does a better job of alkalizing the body than Chloride, apparently, which is what my body is needing since it's incapable of doing it on its own. Having HKPP with the presence of RTA is a serious double whammy, considering that both are primary (whereas HKPP is often secondary in others...I have the familial form).

So now, just waiting again. Lord give me strength.