Re: End of second week of chemo - Thanks to all

[Guest guest]

Hi Debra,

Thanks for keeping up with me. I appreciate it.

I hope I can go back on Prednisone, as much as I hate the side effects too.

The doctor has put me on Plaquanil, which I have no idea what is, but he said it

should help the Sarcoid.

I'm with you, I don't see how the doctor can not believe in something so many

people have. Like you said they know I have two things, why not " believe " in

the third one. It's not like I go around making things up. He should know that

by now. Crazy is the right word.

Thanks a lot for writing Debra,

Love,

Marti

debra van ness wrote:

Marti, I am so glad you are keeping us updated. Hope the chemo does

the job and you will be able to eventually get back on the prednisone and have

the Sarcoidosis symptoms under control.

It is interesting that they " dont believe " in fibro. I mean we are talking about

a woman with cancer and another very proven illness. It is kind of strange that

they would not believe in fibro. I don't know... sometimes it is like asking

someone " do you believe in ghosts " ? or " do you believe in UFO's " ? Crazy isnt

it???? I mean these symptoms are certainly present for some reason in several

million of us here in the U.S. alone..... not to mention how many world wide.

Well, Marti, keep up the chin honey. I will be thinking of you.

love and hugs,

Debra V.

Marti Boguski wrote: Hi all,

I want to thank you for your thoughts and prayers while I'm going through chemo.

I finished my second week yesterday and start the third week next Wednesday -

Friday. I guess they are going to keep it Wed-Fri of every week, unless

something happens where I can't tolerate it.

I've been really sick for those three days and a little this morning too, but

it's better this afternoon. I'm really weak in addition. I had signed up for

another class in staying current with the laws and lingo, etc. in Aspergers

Syndrome and was offered a job that could be part time and on my own schedule.

From a place where the director actually knows I have fibro and believes in it.

For those of you who don't know me, I'm fast going broke and will be soon and

don't know what will happen. So if I could bring in some money it would be a

lifesaver. Now I'm not sure, but hope to have the energy to take the class on

Tuesday mornings. Pray for me please, if you are one who does.

You have all been in my thoughts too. I know you are all struggling with your

own problems. I've tried to get to the computer and write to some of you, but

haven't been able to do the job I would like to do. I will keep trying to keep

up as well as I can. It is so nice that I have this family cheering me on - well

I am cheering you own too.

One problem I've been experiencing that wasn't expected is that my Sarcoidosis

has started flaring up again. It has been pretty much under control with taking

Prednisone, but my eye doctor has had me weaning myself off of it. I got down to

10mg a day and started flaring. All my symptoms started coming back. After chemo

Thursday, I went to my Sarcoid doctor (pulmonologist).He had me take a PFT and I

didn't do so well and also need more oxygen in my blood. The nodules have come

back on my lymph nodes and my joints and throat - I'm back to the raspy voice. I

have started the fever at night and the sweats, even though it is 18 outside.

I'm really disappointed about this, because before the chemo and weaning off

Pred, that part of my life was getting under control, except for the side

effects of Pred.

My sarcoid doctors are very good at what they do, but it really gets to me that

they don't " believe " in Fibromyalgia. How can you just not believe in it? It

seems to me like saying you don't believe in politics. They think the symptoms

could all be sarcoid, except for the brain fog, which I don't think they believe

happens for either reason. I tried Thursday to explain a little to him and (he's

an older man - 70's?) he patted me on my knee and looked at me kindly and said

" maybe you have some anxiety. " I wanted to punch him!

Oh well, this is my update. Thank you to all of you who are keeping track of me.

I really appreciate it so much. It's so nice to have a family who believes,

because you all have it, and rallies around those of us who have difficulties in

other areas too. You are so great!

Thanks,

Marti

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.