Re: Re: new begining( )

December 8, 2008

Thanks a lot. You've sure been thruoght a whole alot. Your attitude is

amazing

What city are you in?

I'll be praying for you.

Hope you get a good night sleep, you'll need it.

I'll try to keep in touch. Some times I have to drop out for a few days when

It hits. But I'll get right back as soon as I 'm able.

I was on the same combo.MTX, Pred, & Plawuenil,+ Sulfacinodine. . I didi

take the MTX & pred. maybe I'll cut it 1/2 next week or the next.I have to be

sure I missed the atack.I've started wt. the night sweats & joint pains.Amazing

what some humans have to endure just to make it here o earth, another day.

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December 8, 2008

Got to keep going one of these days I will have grandchildren and I want to be

able to enjoy them.

I live in Beebe, Arkansas, its about 40 miles northeast of Little Rock.

Slowly you will probably get new symptoms and then the pieces to the puzzle fall

into place.

My Rheumy asks me to keep a journal, she copies the pages at each visit. She has

me write down 2 temp checks daily, how I am feeling each day, giving details

like my right hip is hurting bad today, etc.. Acitivties for that day, like did

laundry and went to the store. She told me to be honest and not fudge, like one

day I wrote , feel like crap today. She looks for patterns like when do I get

temp spikes, was I doing something that day that could have brought on a flare.

And at the end of each entry for the day, she has me write down how much pain

meds I had to take that day. Besides it helping her it helps me sometimes just

to vent. I guess writing how you are feeling for the day kinda helps, plus it

helped with my dx. I also write down any questions I have at my visits, I

include it at the end of the day with my pain meds. Seems easier to write it

down in the journal when you are thinking about it, than trying to remember it

at your visit.

Take care, I think I will try to fall asleep

Chapter 2 tomorrow

________________________________

To: Stillsdisease

Sent: Monday, December 8, 2008 10:53:47 PM

Subject: Re: Re: new begining( )

Thanks a lot. You've sure been thruoght a whole alot. Your attitude is

amazing

What city are you in?

I'll be praying for you.

Hope you get a good night sleep, you'll need it.

I'll try to keep in touch. Some times I have to drop out for a few days when

It hits. But I'll get right back as soon as I 'm able.

I was on the same combo.MTX, Pred, & Plawuenil,+ Sulfacinodine. . I didi

take the MTX & pred. maybe I'll cut it 1/2 next week or the next.I have to be

sure I missed the atack.I've started wt. the night sweats & joint pains.Amazing

what some humans have to endure just to make it here o earth, another day.

************ **Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000010)

December 9, 2008

Did you get to have your infusion today? Sounds like you did.

You definatelly got a good RD. I had a bad one for yrs. (treating F.M) bbut

coulldn't be ppicky , not many new about it. Also he gave me ssomething for

pain , wish here most Dr.'s don't want to embarq on. I think this new lady is

good but doesn't comunicate much.

I started to keep track of the symptoms 6 mo's after new symptoms, I got

details that I know most Dr.s have not heard of. I muyself figured that hormones

trigered flares 2 yrs. into the game. Then there were not consistent, untill

I got perimenopausal. I allways keep trying to find out what it was by going

to dif. specialists. Not one figured I needed an RD. ( specially me since I

allready had one.)I get botox injections every 3 mos. for the cronic neck

pain, that was though to be cause the F>M, now I really wonder.

The new RD sent me to a pain specialist & HE sent me for alot (17 vials) of

blood work checking for hormonal deficiencies , including Endo. wish makes

total sense since I've had muntiple goiters for 7 yrs. we have to follow wt.

ultrasnd. I have a lump on muy neck that 1/6 dozen Dr.s have felt & described

but never showed up on test. The lump is symptomatic, yet they all droped it.

Just when I said , I 'll see no more Dr.s. I get hooked up wt. her.I've been

on the same combo. So since I saw her 6 mo.ago I 'm better in the sence that

I skiped one episode BUT I did have to go throug the " stage "

it was spread out for over 9 days, then recup. I didn't want to selltle for

that. I see to many members taking a whole lot of med's & still be very

sick.If it doesn't woprk for 2,3 mos. it's time to move on to the next. & that

she's done... Last time didn't seem to thrill, when I told her 'about the same.

I want better enought to participate in life again. I'm old but NOT that

old...

Are you still having periods?

I'll wait for the next chapter.

Huggs & best of luck wt. treatment. ( I hope to be able to recomend

something worth while)

Vivien

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December 9, 2008

No I did not get to do my IV today, to high of a fever and WBC was back up in

the 50,000 range. Frustrating, but maybe by the end of the week, having trouble

with my hip and both legs. They sometimes ache real bad and I have to get up and

walk around. The only thing I take for pain is Darvocet, I hate pain meds, I

think its because I cannot stand not to be in control or know what is going on

around me.

You need to push the issue about the lump in your neck, Have you had a CT scan

of the soft tissue in your neck. Look what happen to me, fortunately my docs

immediately jumped on it when the swelling would not go down.

I have wondered about hormones before, no I don't have periods, I had to have a

D and C last year because I kept bleeding and the meds where not helping the

situation. I have not had a period in over a year, its great.

No, you are not old.

By the way did you tell me where you lived? I may have forgotten if you did. We

had bad weather all day, and now the temperature is dropping and they say it may

snow, welcome to Arkansas.HA

Are you on anything for osteoporosis? I had a bone density a few weeks ago and

it should that I had osteo in my Left Hip, not bad but just starting and being

on steroids tends to make it worse. My rheumy started me on 1200mg of calcium a

day.

I agree if you have been on something for 3 months and it does not work, its

time to try something else. My rheumy has been great about that part, we had

agreed that if it was not working we would find something else. She said that I

knew how I felt she didn't, so I had to tell her and we would try again.

Since I have all these other factors going on besides the Still's , I am

difficult to deal with medically. I just tell them I am there to keep them on

their toes.

Keep writing stuff down, I know many people have finally gottten diagnosed by

keeping a journal.

I hope that your rheumy will continue to work with you and get you better soon.

Many hugs, lots of support

________________________________

To: Stillsdisease

Sent: Tuesday, December 9, 2008 8:00:48 PM