frustrated

[Guest guest]

So whats new huh???!!! LOL Seems to be the story of my life as of

late.

First though...hoping all had a wonderful holiday and that the new year

is a good one for everyone. It really was quite nice over here,

although I overdid and am still paying for it to a small extent and my

Madison was sick through the whole thing (and now her sister is down

with it...nasty cold). I am praying...I mean, down on my knees praying

at this point....that this coming year us a whole heck of a lot better

than the last few have been. I am all for seeing the positives and know

and acknowledge the good things that have come about the last few years,

but as I told my mom today, I am TIRED and just really need a break from

it all if I can get one. We shall see!!! If the end of this year is an

indication I am doomed I am afraid...LOL. Between the girls being sick

and my sister being back in the hospital again, we are not ending this

year on a real high note....but I am thinking positive!!!

Speaking of, on a positive note over here, I am down to 20mgs of the

Prednisone!!! I have no earthly idea what my CPK numbers are doing at

the moment (they haven't been checked since I began coming down) but am

hoping to talk the doc into atleast running blood work soon even though

I am not to see him till later this month. Ultimatly, I have decided

that I am done with Prednisone, regardless of what my numbers are doing,

and they are gonna just have to try something else if I begin having

problems again. The side effects have been too great and since I am in

worse shape now than when I went on it (in part due to the side effects)

I think this is the wisest decision we can make. I know there are no

meds for this disease that are easy on the system, but anything is

better than what I have been dealing with...I think...LOL. Will let you

know if and when we have to try something else I guess!!!

I really am a confusing mess and I have given up any real hope of there

being a doctor that can truly figure me out (seems like we are soul

mates in this respect Bill!! LOL). I do think my trip to Cleveland to

see my kids mito doctor will be interesting and that maybe there will be

some answers there (will be going there sometime in April with the kids

for their follow up). He is really my only hope of a doctor seeing the

whole picture and maybe, just maybe, finding some answers for me. Hate

to say it, but after so many years of not seeing doctors and just living

with whatever little aches and pains I might have had (I did get my

yearly check ups, but that was all), I truly regret somedays getting

into this medical merry go round I am on, and some days consider just

never going back to any of them!! LOL I know its not gonna happen, but

its nice to dream sometimes. Of course, if seeing them is doing me no

good, one has to wonder if maybe not seeing them any more might not be

easier on my mental health<grin>.

My latest frustrations are hand tremors that are making typing a real

challenge, blurry vision, and an intestinal tract that is just never

happy anymore. I truly thought it was related to one of the other meds

and have weaned myself off everything but the pred, but the issues

persist (although the tremors are a little better I think). Of course,

its so easy to blame everything on the prednisone or on the disease

itself, so I don't even see much point in saying anything to the docs.

They are likely to just want to add more meds to the mix anyway and I am

done with that too. I was up to 8 meds, totalling anywhere from 8-20

pills a day, more than a few being taken to counteract what another one

of the meds was doing, and I have just had it with all of that. I hate

taking pills as it is, so you can imagine what this was doing to me.

While I cannot say that I am necessarily physically better having gotten

rid of all these meds, I can say that I am mentally alot better off

them. Besides, I honestly could not financially afford it all anymore.

Between myself and the kids our copays for meds was almost $400 a month.

Add in copays for doc visits and we have been out as much as $600 a

month...way more than we can afford at this point.

Anyway...sorry for venting, but I know you all understand. I am

wondering if anyone else here has dealt with hand tremors??? Was also

wondering if anyone has ever been dx'd with Cushing's Syndrome brought

on by the prednisone, and if so what that meant for them??

Thanks as always for being here and HAPPY NEW YEAR!!!

BIG hugs,