Somewhat productive day… typically painful night.

Today, I’ve mostly been dealing with the “general fatigue” thing I have so I’ve been able to do a little more.  Yesterday, after busting my budget on a printer, Mom and I swung by Lowe’s to see if the Mums had arrived.  I’m pleased to say they have!  They had some for 88 cents which were my initial plan, but they had much large ones for $1.50 that I just couldn’t say no to and I went with them instead.  Yes, I know… busting the budget again.  So I bought 6 of those in red and yellow, right?  Well, I had to mix it up a bit, you know, so I grabbed three Russian Sage for a splash of light purple.  Those were a little more at about $4 and some change a piece, but I only bought three, ok!  Anyway, this morning, before it got miserably hot, I planted my new flowers in the bed around my mailbox.  As soon as the first plant was in, I was regretting my decision!  I could literally feel my muscles and joints getting stiffer by the minute.  I rushed through without a break so from getting all the supplies rounded up, weeding the mound, and actual planting… we’re talking about 45 minutes to an hour of actual work.  Surprisingly, a good stretch afterward seemed to work quite well for me in terms of the stiffness.

I sat outside with the kids while I rested up, feeling kind of left out of all the fun.  My step-daughter was here this weekend and she, the hubby, and my son were having foot races around the house.  My husband is a pretty good sprinter and I saw clearly today that his daughter has inherited that ability!  She’s about to turn 8 and really gave Dad a run for his money!  Its the long legs!  My son, however, must take after me, he, he.  He’s got the long legs, but he’s just not as graceful.  However he has also inherited another trait of mine… never give up!  Even when Dad and Sis had made a complete lap around the house and he was still just clearing the first far corner, he stuck to with it until he finished!  He’s also enginuitive like his Mommy!  After several times of coming in last place, he made a dash to his ride-on tractor and lined it up on the starting line for the next race!  Sadly, he still didn’t win, but you have to give the boy his props for trying… with whatever means necessary!  If I could have ran… I would have let him win, by the way.

It took me a while, but I did get a second wind and got started on a massive lasagna for lunch.  There were a lot of puzzled looks over such a heavy meal mid-day, but I didn’t plan on cooking this evening and told them to eat hardy and expect leftovers or other heat-em-and-eat-ems for dinner (supper… for those in the south).  That took the last of me.  We’re talking about 7 layers of alternating homemade sauce, cottage cheese, ricotta cheese, and noodles in between.  I was completely whiped out and thankfully, so was the boy!  We took a nice long nap this evening together.  The irony there is when I’ve done anyting physical and then nap, I tend to lock up even worse.  So even though I feel somewhat recuperated, I’m aching and hurting in about every joint I have.  I was able to do a couple of loads of laundry, water my other flowers, and swept off the carport, but that barely covers what chores needed to be done.  Still… I did at least accomplish a few things!

Having napped so long this evening, I feel wide-awake now and the clock just passed the 2 a.m. mark a few mintues ago.  I dread laying down because then the tingling in my feet will start up and it is more annoying than I could ever explain.  I also predict I’ll do a lot of flopping and turning, trying to find a position that is least painful, as completely painless isn’t going to be an option tonight.  But by Granny I was PRODUCTIVE today! 

Getting started on my Dr. visit notes.

Yesterday, I made a trip to Circuit City and bought myself a new printer.  My old one finally bit the desert dust (planning a memorial for its 10 years of service) and I’ve been feeling the loss!  I didn’t realize how much I depended on it until it was gone.  I could no longer print receipts for online bill pays or purchases, print out articles I wanted to read later, print recipes to carry into the kitchen with me, and you can forget about writing stuff out by hand!  My hand tends to cramp up half way down the page and leaves me with chicken scratch for the rest of the day.

So anyway, I plan on getting a new comp soon and didn’t want to go overboard on the printer.  I don’t print my own photos or anything that requires a special touch, so I’m thinking $50 would by me something that would work just fine.  Well, all the cheap ones ($30 range) were either not compatable with Windows Me, which I still have, or else they were out of stock.  However, the friendly sales-guy turned me onto to this little $80 number that does work with my system and is fairly easy to set up and operate.  WOOHOO!  SOLD!  That was supposed to be my splurge for the week, but then there was Lowe’s and some flowers, and… well… that’s another story.

I’ve spent some time today working out a plan for relaying to this new doctor what’s been going on with me.  My original idea was to get a stack of index cards and put each symptom on its very own card, then pick two or three to focus on during each visit.  However, that brings me back to the problem with writing by hand or the added task of learning to use the new printer to print on index cards.  So scratch that and we’ll go with plan b.  I’m writing a full-page report on each of my symptoms and giving him his own copy to review (yeah, like he’ll take the time to do that). 

On top of that, I want to write a letter to all the doctors I’m currently seeing and get us all on the same page.  I’m thinking more of a “piss or get off the pot” kind of letter as I have grown very tired of their “let’s wait until she develops something we can identify” attitude.  I also plan to put a stop to the whole “we’ll monitor this or that” and ultimately dropping the ball BIG TIME!  On the last two blood tests I had, they somehow forgot to order an absolute eosinophil count, though I’ve been told it needs to be monitored very carefully.  I’ve got my PCP telling me my hypoglycemia is “no big deal” while my former endocrinologist told me it could be life-threatening.  Which is it?  I think that would be an important thing to know!

I just thought of something else I need to do!  I need to send a copy of my symptoms IN MY OWN WORDS to EACH of them, as well.  I am so tired of hearing the doctor reading off my chart and getting so many of the important details wrong.  For instance, I don’t have “general fatigue!”  Ok… well I do, but that isn’t as concerning as the episodes of muscle fatigue in which my muscles feel as though they are instantly filling up with lactic acid, yet that part is lumped under “general fatigue” when there’s nothing general about it!  I need to somehow convey to them the gravity of my situation!

Yep… this is me back in the fight, I guess.

My Chronic Christmas Wish List

I was counting down the days left until Christmas and scrambling for ideas on what presents to get for the family and asked myself what I want for Christmas this year.  Still being in the “pity-me” mood I’ve been in now for days, this is the best I could come up with so far:

1. First and foremost, another reprieve!  This time last year, I wouldn’t have give you 2 cents for my sorry life, but around the middle of October I had almost complete remission of all my symptoms that lasted right into the new year.  Santa, you can forget anything else I ask for if you come through on just this one!
2. Should request #1 fall through, I would like to find a specialist like those we see on Mystery Diagnosis who know a thing or two about rare diseases and condition the majority of other doctors miss.  One who could actually explain the eosinophilia and the hypoglycemia and even see the connection between those and my chronic illness.  Also a real first, actually be treated for my illness rather than be pacified with patronization.
3. I would like to actually have the energy, inclination, and brain power to do all my Christmas shopping early this year.
4. I would like to get a big snow and actually be able to make snowballs and snowmen without my hands burning as if submerged into acid.
5. I would like for Santa’s elves to sprinkle some magic dust on my family that would help them to truly understand what my days are like now.  Without actually having to experience it first-hand, of course, as I wouldn’t wish this crap on anyone!

That will do for now, but I get the feeling I’ll have more to add later.