Thursday, September 29, 2011

i'm baaack!!

I've been getting solu-medrol every 3 weeks for about 6 months, but it really hasnt helped me at all...I really like my neurologist, she's Ukrainian, I totally love her accent...'Leebee!'...haha...
So, at my appointment Monday, I was so upset & frustrated with ms, I almost started crying (which is one of the very worst symptoms of ms!)...can I get an amen from all my 'ms buddies' out there? Dr P reminded me that it's not relapsing any more...I really love this dr, she doesn't mince words or do that fancy dance around the reality...sometimes it hurts, but, it's always better to hear the truth straight out from your doctor. Most of the time...
So today would've been another iv day, but she's been trying for months to get me to do chemo...I've never really looked into it as an ms treatment, I'm just one of those people that freezes up at the word cuz automatically when you hear chemo, you think cancer...or is that just me? Even though I know that's not what it'd be for in my case.
But I pushed hard for my suggestion, & if I don't feel better, then I'll try the chemo, and she said okay...(she's the best!). Now I get 28 mgs of prednisone a day...right now I have the rx for 30 days + 3 refills! Prednisone is one of my best friends, ya know? Not only does it make me feel a little better physically (actually, it gives me enough strength to fight off the worst of the symptoms), but, like I just told one of my home health care nurses yesterday, I'll be grinning & laughing nonstop while I'm on it! That's true...it's my best friend when I get one of my 'frowny moods'! Also, I went downstairs to the lab, & got both the blood tests I was told to get a couple months ago...& OMG, she took 6 tubes of blood!! Holy crap! I'm really glad I finally got it done, though...Dr A, my primary doctor, his secretary called yesterday am, & said that my thyroid was high, they had to change my synthroid down from 125 mcgs a day to 112...so, maybe with the combination of 28 mgs a day of prednisone + lower thyroid, maybe I'll break 85 lbs...cross your fingers??
BoUnCeS!! LibbY!

Oh, my wittle baby girl is gonna be 28 Sunday, October 2! And she starts her new job the tenth, she got hired as a receptionist/medical assistant at the dr's that delivered her son! What's really neat about that dr is that he was a high school exchange student here when I was in 10th grade...this town can't be that bad, if he chose to come back here from India, when he could probly go just about anywhere in the world...they're gonna work with her college schedule...she's studying to be an rn, but her long-term goal is to be a midwife. Ick...that's like a garbageman's job...I wouldn't want it, but thank God somebody does!

14 comments:

X. Dell said...

(1) Happy b-day to Tiff. BTW, my great-great-great aunt was a midwife. She delivered my mother.

(2) I can sympathize for using chemo as a very, very last resort. It's not easy to go through.

I'm also not aware that they treat MS with it. How's it supposed to help?

(3) I'm hoping that you have a strong remission.

Libby said...

x, i'll pass on the happy b'day to tiff tomorrow, her husband's having a birthday party for her tomorrow night
and i'm still looking for any info about chemo for ms...still looking...

Hold my hand: a social worker's blog said...

Leebee!!!! Ahem... I mean, Libby!!! :-))

Happy birthday to your daughter, and congrats on her new job. How neat!

Thank you for your sweet comment.You are so precious!
Libby, email me your mailing address and I will be so happy to send you a book or a couple of books if you have a special nurse you want to give a unique "gift" , My email is :
doris.plaster@yahoo.com

I was thinking of you recently... and it was because one of my residents who had MS. A sad story, but a beautiful memory. I saw Gail reading a magazine as I was leaving for the day, and I impulsively drew closer and hugged her--which I had never done before with her-- We hugged each other, and I told her "you are my friend" and she said: "you are my friend too" The next day, at 4:30 am she had a heart attack and died immediately. It was shocking news. I still can't get over that. I need to write a story about Gail-- I have to confess that writing stories is a therapy for me.

((((( hugs )))))

Doris

Meg said...

Welcome back!!!! Glad you're listening to your docotor. Good lcuk with your new treatment plan.

and happy birthday to your baby girl! What a cool coincidence!

Have Myelin? said...

libby, remember braincheese? didn't she have chemo and then *poof*, off she went to have a life? (how dare she, LOL) Not saying that would happen to you/us if that route was chosen but my neuro seems to be a fan of it...for everyone else except me due to the MRI issue.

I wouldn't rule it out.

I clicked "funny" on your box because of your midwife as a garbageman comment, I almost coughed up both kidneys laughing...

You do better on steroids than I do. I go crazy. I can't stand them!

X. Dell said...

I found this article at the National MS Society that explains why they use chemotherapy on MS patients. I'm sure most of not all of this you already know, but if it helps to keep reference, I'll leave the link for you to click on.

Libby said...

thank you, x!! i actually stayed up all night thursday, & found this at 4 am! then at 5:30, i heard about anwar al awlaki being killed...congrats to the obama team, again!!

Shiny Rod said...

Yea!!!! Sweet, I missed ya Libby!!!

Neoma said...

Libby, so glad you put up the link, I have all but lost contact with blogger.....I was going to ask you on Facebook how things are going, then saw your post.....the never ending Dr.'s and pills with these darn autoimmune disorders, huh. I never thought of Chemo as a treatment either, but I know the Dr. made mention of it with Lupus also, so I guess it is supposed to help, but me, like you, I hear Chemo and I think CANCER. So shy away from it.....so glad to hear you are in remission...and glad that Predisone helps you. I take it also.....helps me too....hugs sweetie......not much a person can say about MS....it is what it is, same with Lupus, it is what it is, and we just do the best we can......Love you..

Libby said...

nea, i'm so glad to see you! it turns out that chemotherapy isn't the name of the drug, it's the method of transmission, you know? a lot of drugs are given this way, i just think the drs avoid using that word, maybe cuz of the bad mnwental image...

Thomas Alice said...

I'm glad to see you back on your blog! I see you on Facebook, but I guess I'm just old-school.

Good luck to your daughter! I think she'll find that's a really tough field to get into- it's surprising how many nurses want to work with babies.

Have Myelin? said...

Hello Libby,

How's the 'roids? Still having fun on them? =)

boneman said...

so, back again, eh?
Good!

Here's something I found, recently.
Rick Simpson's Run From the Cure.
It's a group of videos that take to heart cures from marijuana.
(no...NOT smoking it. Although you can if you want, it's still illegal in most states)
http://ms.about.com/b/2009/05/19/chemical-in-marijuana-to-slow-multiple-sclerosis.htm
It's more to getting the oil out and using it, and the findings are fantastic.
Has been shown to cure at least four types of cancer (breast, lung, skin, and prostate) and calms tremors in MS and CP patients.
Improves memory of Alzheimer patients.

http://www.youtube.com/watch?v=n31Nuj_AvTg
is the video that first caught my attention.
And, at sixty and (usually) broke, I gotta tell you, the first time I think prostate cancer is stepping in on me, I'm heading to Nova Scotia...or at least Ohio.

Now...of all the comments you get normally, tell me THAT isn't just a little bit exciting?

Whitemist said...

much that you are going through - please post to let us know how things went. Chemo would be frightening to me also....