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.