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Tuesday, October 28, 2008

well what can i say

hiya!
well went to drs yesterday and he first thing he says to me is what have you been doing and im like say what? he said you test came back all crazy and i was like came back bad? my muscle test came back 6800 wich is bad! when i was there 5 weeks ago it was 2823 so its increased and that would mean my muscles or getting weaker. my muscle test needs to come back 200 for me to be all good. i told him iv felt like something wasnt right that something has changed but nothing to drastic, just more so really tired, weak on and off and just a change than before hard to explain. so basically im falling apart again because hes trying to wean me off the steroid (predisone) and im not responding well to that so the longer i stay on a low dosage im going to fall apart again so he upped my dosage right back where we started in the beginning where it was helping me to get better. hes also got me going to get some blood test to see if i can try out this medicine called rituxan, they are trying it on patients who have muscle disease. so hopefully i can start taking that with the predisone and really start getting better. i had to yell at the boyfriend though and say i told you so. he always thinks im milking things , like when i ask him to help me with soemthing cause i dont feel good, help me get out of the chair etc. he thinks im just being lazy but the truth is i need help sometimes still and he doesnt get that, he says he knows that im going to have good and bad days so why then question me when i need help just help me!!! thats how i feel anyhow. he took real good care of me when i was really sick over the summer but hes not the overly helping type , its more like ask him for help he wont just offer, he claims he dont want me to get too use to his help and relie on him and i get that but still you should help me when i need it exspecially if its small things. so needless to say i dont think he will be questioning me quite as much anymore. so today havent done a darn thing really besides wash clothes. its very windy here and cooooold! bf didnt have any work so he got my son off to school for me and has been playing wii all day, do i sense a problem here lol. i hope he doesnt think hes going to spend hr and hrs playing that darn thing! thanks for all your comments to by the way. as far as insurance im trying to get help but not so easy cause i have a bf of six yrs not married , its my sons father so since we have a kid together and live together but not married they go by his income and he makes to much so it screws me. i have this little insurnace right now called pac but all it pays for his my primary dr and my prescriptions wich does help. doesnt pay for hospital, specialist or anything like that so that where my problem lies. i just thank god that i am able to take care of my muscle problem right now even though its out of pocket. i get all my blood work done everymonth out of pocket and just pay the hospital what i can each month. i dont worry about the debt anymore cause my being alive and getting healthy is more important to me than worrying how much this test is going to cost me you no. i hope everyone is having a good day. hugs

10 comments:

Ericanbiloxi said...

I don't know what is worse...having to ask for the help from a mate, or like me, who has to tell my mate that he is driving me crazy with the, can I do this for ya, ya need this....I can't even imagine being seriously ill and having him "helping out" lol, I guess there is good and bad to em all.
I am like you, getting better trumps the bills. Just more stress, what you do NOT need.
I hope the upping of the steroids help you get back to normal fast.

Tightening the Corset Again said...

If I understand correctly, your illness is a chronic problem (meaning that it will not ever really go away)... and I'm thinking you need to educate your primary caregiver (in this case, your bf) to make sure that he understands you aren't just milking it or being lazy. You don't need the mental stress of feeling guilty on top of feeling bad. It takes a huge commitment to provide financial, emotional and physical support for someone, so I'm not knocking him... you guys are young, this is a lot to deal with... but he does need to understand... you need to be understood!
*hugs*
heather

friedmsw said...

I really hate to hear that the test came back with those results! I can only imagine how frustrating it must be for you. Hope you feel better soon with the increase in steroids. Keep us informed on how you are doing!!

MISSY said...

I'm sorry that your test didn't come back very good, I hope this makes your boyfriend a little more understanding though. *M*

http://learningtoadapt.blogspot.com

Janie said...

So sorry to hear that your tests came back worse. My daughter hurts all the time, has RA. She can not seem to find a good doctor. :( I will keep you in my prayers for you to get better soon. Hugs, Janie

~Cherubhugs~ said...

Sorry to hear about your tests coming back so high :(

I know what is like not to have insurance and that can be so rough, but there will always be bills in life not matter what.

I hope u start to feel better.

I will be thinking of you
~Ann

Jeanne said...

Tracy, I feel so bad because I have been MIA over on the other group and I haven't touched base with you at all, but things have been so busy here! That's no excuse and I am not going to complain because you have way more on your plate than I do. But I AM sorry!!!

And I am sorry you are still having so many health issues. You really DO need to get that boyfriend of yours to step it up a little. You need some help! He's a typical man though. He can't figure out what's going on right in front of him!! (lol)

Feel better soon honey...and email me anytime!!!

((hugs))
Jeanne

Lucy said...

Tracy, I know what a disappointment a set back can be, but you will get there. My son had Multiple Sclerosis and after 7 years of no remissions at all and not able to do anything for himself the last year, he gave up. I would be interested in an email describing your illness, and what the prognosis is, if it is not being to personal. I care what happens to you. Lucy

Michelle said...

I'm so sorry that you are feeling so sick. I hope the medicine increase helps and that you can take the other medicine too.

I will keep you in my prayers.

Love,

Michelle

It's Just Me ~ Katie! said...

I dislike the thought of anyone being in pain - Hoping comfort and relief finds it way to you soon. Take care of you,
Katie