A new member--grateful to find you!!

[Guest guest]

Good evening~~ I feel like I have finally found a group of friends who

really, really understand what my daily life is like. Thank you for

both creating and sharing your strength, pain, and hope in this

group. I look forward to connecting with many on-line new friends as we

support one another.

I am so happy to have found this group--and to read so many stories that

echo my own. For years, mild joint pain and mysteriously pitted,

brittle nails were in the distant background of my life--now PA rules my

days and nights. I would like to introduce myself and I would LOVE

feedback from those who have walked this path of PA ahead of me.

My name is Windy, I am 37 years old. I live in Northern California, one

hour north of San Francisco. I am married and have two wonderful

children, Zachary-age ten, and Stacey, age eight. I've been generally

healthy until the past six years or so. I had mild psoriasis on my

scalp as a young nursing student in my early twenties--my Mom developed

severe psoriasis in her early forties--but has not had joint

involvement.

I developed mild-moderate joint pain in a few joints over ten years ago

that came and went--easily treated by ibuprofen and rest. At the same

same, my nails began pitting, falling off, became brittle, etc.

As for stress, My son has been chronically ill and critically ill at

times due to a birth defect he was born with. He's had many, many

surgeries and over thirty pneumonias due to chronic aspiration. He is a

wise being and a total delight--but the stress has been unimaginable due

to the endless worry! I've needed to stay home and be his nurse--so the

loss of income, the medical expenses, etc in addition to the stress of

worrying that he'll be OK...whew...it's been a lot (and full of

unexpected gifts and grace as well).

Two years ago, I had my first full arthritis flare. It knocked my

socks off!! I started on relafen shortly thereafter--and met my

rheumatologist. My joints all looked OK on x-ray--so I had to advocate

for preventative meds and started on Enbrel(25mg per week). I have

monthly flares ever since the socks-off flare two years ago where I

must rest and take pain meds--I began MTX (10 mg per week) a couple of

months later...started on vicodin---Norco--and now oxycodone for the

severe daily pain.

My usual pattern involves daily pain and AM stiffness, but while

fatigued, I'm usually able to take care of my kids, I am a girl scout

leader..etc.

However, in the past eight months, the flares are increasingly more

severe with an overall increase in fatigue--I'm in bed for at least 5

days per month and my need for narcotics in addition to relafen has

increased to daily and around the clock. I sleep well thanks to a

memory foam mattress (a god send!!). I have some deformity in my left

wrist that my rhematologist seems unconcerned about.

I now been in a flare for three weeks--I've literally left my home twice

in three weeks!! I am bed-bound with minimal activity and can barely

care for my kids. They are both home schooled ( a wonderful public

charter school for at home learners, California Virtual Academy--

www.caliva.org <http://www.caliva.org> ) due to my son's health issues

(he must avoid colds). I am their teacher most of the time and I've

been completely unable to find the energy to teach them these past three

weeks. Yikes!!

I've been told by a friend that the next request I should make from my

rheumatolgist is Remicade/Infliximeb. So here are my questions...

1) Is the severity of symptoms I describe fairly common among group

members? My friends and neighbors look at me as though I'm a bit nutty!

I've resorted to simply saying that I have " severe rheumatoid-type

arthritis " ...

2) Please let me know if you've had a success story on Remicade or ??

anything else!

3) What dietary changes seem to help? I have to say, when I feel

terrible, my diet quality becomes terrible--I'm sure I'm exacerbating

my situation with sugar and chocolate from when I feel pain and

fatigue...but I am on a ton of vitamins, fish oil, antioxidants, calcium

and minerals...I'd love to know if any concensus exists from members on

anything that seems to help involving diet.

4) What about disability insurance? I've long been planning to return

to work as my son's health improves--but there is NO way I could work

with these daily symptoms. I'm terrified at the thought of not working

again...

I cannot imagine living with this disease even twenty years ago!

Despite the pain and frustration, I try to console myself with all the

possible treatments, pain meds, even surgeries when needed...

Thank you from the bottom of my heart for your support! I look forward

to meeting you, hearing your story, finding hope, and creating community

through this wonderful group.

Take care,

Windy

Petaluma, California