sunny days

July 30, 2005

Its been real nice out the past couple days, the humidity is finally

down, so I've been able to breathe and sleep better, I hope the same

for all of you. Thank you for your kind responses, its strange

talking to people who can nod in agreement and not furrow their

eyebrows at my insanity.

won't be able to take time off from work, only because we are

engaged and not married, if we were married his company policy is

time off without pay, so that wouldn't help either. My eight year old

daughter is wonderful and very mature and already knows to step up

when mommy needs help, I never even have to ask, sometimes she even

ties my shoes for me. I'll get through it, I know I will, its just

that sometimes I need to talk about fearing that I won't and here its

hard to get anybody to listen.

My GP is a good doctor, but unfortunately we live in a small town

where 28 years olds don't get RA, so he doesn't have experience with

the things that he needs for me. It got to the point where one day, I

was standing at the kitchen counter with all my pills lined up ready

to give up, when my fiance and I decided to right out a list of all

that I go through and bring it to my doctor the following day. This

is what we brought him.

current medications -

metoprolol 12.5 mg twice a day (Beta-blocker for migraine)

baclofen 10 mg 3x/day (for pain)

nortriptyline 25 mg at night (for sleep)

hydrocodone/apap 500/5mg up to 3x/day (for pain - however

only get 1 1/2 hour of semi-relief from each pill)

relpax 40mg as needed up to 2x/migraine (works well on less

severe migraine, severe migraines also need phenergan)

phenergan 25mg suppository as needed every four hours (for

migraine and exhaustion)

celexa 20 mg at night (anxiety) recently taken cymbalta was

stopped because mix with nortriptyline caused tachycardia.

Ibuprofen 800mg up to 3x/day (pain - don't get much relief

for severe pain, works well for low-grade headaches and muscle

cramps, causes stomach ache)

Pain levels and sites -

back

between shoulders from neck to mid-back p/l 6-9

consistently

lower back p/l 5-7

neck

p/l 4-9 consistently

hips

of all joints my hips probably hurt the most often and most

severely p/l 4-8

shoulders 3-7

knees, ankles, hands, and feet are more achy than sharp pain

3-6

leg cramps, severe in the night, crampy in the morning

sharp pains on top right side of head, maybe muscle spasm

kidney pain

spasms in lower back that travel up to the base of my skull

stomach aches

general muscle aches and pains p/l 3-6

skin is occasionally sensitive to touch, like a sunburn

Headaches -

usually a constant lowgrade headache p/l 2-5

migraine (speech problems, nausea, sensitivity to smells) 1-

2x/week

severe migraine (vomiting, bed rest, nausea, visual

disturbance, stuttering, confusion, forgetfulness, extreme

sensitivity to smells and lights) 2-4x/month

visual disturbance with absent migraine 10x/month

Symptoms

dizziness (daily)

fainting (once every few weeks)

constipation (bowel movements 4-5 days, usually only relieved

when I have diarrhea)

blood in stools (will be having a colonoscopy August 2nd with

Dr. Woodhouse)

shakiness (daily)

losing hair

run fevers (approx. 2x/month)

swollen glands in neck and armpits (2-3x/month)

SEVERE fatigue

not sleeping well, very broken (since I've started the 25 mg

of nortriptyline, I get a solid sleep block of 2-3 hours, but not

every night) nightmares, unable to fall back to sleep quickly

sometimes not able to move my body the way I'm telling it to

move

lose balance (daily)

blood in urine (recent ct scan and cystoscopy show that I

have kidney stones w/ a history of passing them myself, there is no

blockage or tumors present and Dr. Lieb believes blood is due

to " flecks " being passed and UTI's that are often)

rash on knees and elbows (recent biopsy shows that rash is

not psoriasis, so we are thinking it may just be a stress reaction)

irregular periods with severe bleeding, cramping and very

large clotting, sharp pelvic pains during menses also, usually on

right side, maybe due to polycystic ovarian syndrome. Periods last

from 10 - 16 days. I have a history of PCOS, endometriosis, and

Vericosities on my uterus. uterine cramping usually lasts all month

long, even when not menstruating. I have been scheduled for an

endometrial ablation by Dr. Ferrando to minimize bleeding, will take

place sometime after september breast reduction.

Mental Health - -

anxiety attacks 1-2x/week

worry (constant)

wacky dreams (nightly)

depression (frustration from pain, worry, exhaustion)

irritability (especially in morning)

some days seem cloudy

fatigue and pain make things feel unbearable sometimes... I

try hard to feel better and the trying tires me out, I've struggled

with depression and anxiety most of my life, what worries me now is

that death sometimes seems like a rational option compared to what I

feel every day.

After he read this, he finally understood, that if he didn't do

anything about it, I'd take care of it myself and I outright said to

him, if you believe its all in my head, send me to a psychiatrist, so

they can diagnose me as a nut. I just need to figure this out. Since

the day I gave this to him, I've been diagnosed with RA, carpal

tunnel palsy, and some loose joint syndrome I can't pronounce, disk

degeneration, nerve impingement and my rheumy thinks there may be

something else going on too, cuz I have unexplained pain. I go for

more blood work and tests over the next two months, along with the

breast reduction on the 9th (so nervous, yet excited) and on tuesday

the 2nd I have a colonoscopy to find the cause of the rectal

bleeding. I really think I just need someone to hold me and tell me

it'll be ok, even if thats not the case. Bless all of you, I know

what you feel and if everyone else did, they would be so proud that

we all make it through the day, with our hearts and minds intact.

Hope you all have a wonder-filled and close to pain free day. Thank

you again for your kind thoughts and prayers.

kerri

August 1, 2005

My God!!! The majority of your symptoms are similar to mine. I

thought that I had passed out and was reading soemthing that I would

post. With the exception of meds of course. Who would have ever

thought that maybe being drug free could be bad!!!! It certainly

hasn't been pleasant thus far. Anyhow, please let me reassure you

that it isn't in your head!!!! Please oh please do not ever think

that you would be better off ya know what. It simply isn't true.

Hard to rationlize it, but it is true!!!!! I have had just about all

I can stand with the " all in the head " syndrome that is so easily

suggested to us women! Take my situation for example....I have

something in my head now, I have to pray to God that it is some sort

of fluke. I don't think that for myself, (well, kinda) but, instead

I think that for those whom have stated it as it may very well now

turn out to be in my head! They will have to live with that the rest

of their lives. (I don't know that I will get that same

opportunity?) I do know that when taking meds - sometimes it takes

switching things up a bit which can be a pain staking experience but

worth all the effort when a combo that works is reached!!!! I only

have experience w/ psych. meds. that way. Hell, at one time I was on

23 pills a day! Now, I'm on none! (Until the 10th. anyway) I know

that this can all be so frustrating and to set out all your meds and

look at them is a bit overwhelming. Think of it this way...picture

the person that you care the most about and think that they have

something and need meds hopefully to live a healthy happy life. They

can't w/o it. Like diabetes, for example. Wouldn't you hope that

they would take their meds and that the meds could and would make the

difference. Now picture what would they want for you? Don't be

afraid of what might turn out to help you, you are worth it and it is

worth the try!!!!! I know that this is all so scarry and frustrating

but, hang in there and keep us posted! Take care and remember...YOU

ARE WORTH IT!!!! YOU ARE WORTH EVERYTHING!!!! XXX's KIM

August 1, 2005