Rheumatoid Arthritis

http://www.juliusbergh.com/cocky/
Get out the hankies folks it a real tear jerker. sniff sniff
Ila in Maine mailto:sewcraftyila@...

I have been waiting to see the so called great rheumatologist in the large medical center here. I was thrilled when she walked in the room to find she was female and african american. Maybe a doctor that has a clue what is really going on.

She does a complete history goes over meds and past medical records. Then she does through exam. I get dressed and she comes back into the room to tell she thinks I do not have RA at all. She sees no evidence of RA and that my former doc did not either...so what the heck have we been treating with many strong and potentially toxic meds the past few years!!!!!!????? So next she says she will get lots of labs and see what they say. Now I was Dx'd with RA in 2002!!

She gives me a script for Lodine XL and tells me to come back in 4 weeks for a visit with the Nurse practioner to have my hips injected for bursitis. She will go over labs then.

At the end of the visit I get a letter saying she is retiring...so this long wait was totally for nothing. The doc appeared very competent and thorough but had NO personality.

So I really got no farther than I was before I went to this doc. I did ask her about the increase in pain stiffness and swelling pre-menstral. She said maybe. Asked me when my next cycle was and said well lets see how you feel when you come back!!!

Now here is the real delimmia. This practice is the ONLY one within 100 miles I can see. There are no other docs that accept my insurance and I have no way to even get to the next large group of docs.

So now what do I do? They claim they are hiring a new doc in a few weeks...so maybe after the New year I will get to see this new doc.

So much for thinking the doc might understand.

Toni

Deb

Thanks so much for all the links you sent and for your emails. I really do appreciate it.

Josephine Askren

List owner Mennonite Faith

Hi All,
I haven't been able to come here as often as I like, I am just really busy with
my baby. Can you believe he will be 3 months old on Tuesday?!
I have had some RA pain but for the most part am doing well, just tired. I
think
about you all and pray for you all every day,
If you would like to keep in touch, please feel free to email me at
catlizmama@....
Be well,
Elizabeth

What did the doctor say hon about the numbness in your thigh? Can't
send you any jokes or anything until you report in.
Ila in Maine mailto:sewcraftyila@...

perhaps some of our newer members will find this of interest... gentle
hugs! Marcia Note: forwarded message attached.

John wrote: I've been in the dumps for quite awhile now and it was good to read your post , you have such a good out look on things you remind me of my grand mother thanks and God Bless you dear.

Ardeith writes: I've got to look for the humor in my life, or I would become a sour bitch that no one wanted to be around. My poor little mamma was so crippled by RA that she could not dress herself, and she was a vindictive, manipulative, sour old woman....

she is my best example of what I do not want to be, and how I do not want to behave.

Did I tell you about my kittens? Last June, after losing two very elderly cats, Fred and I decided a kitten was what we needed to lift our spirits, so I told my friends in Tampa to keep an eye out for a male kitten. About a week later, here they came with a pale grey tabby boy....about seven or eight weeks old....very misty grey, so I thought I'd call him Misty. Took him to the vet for his first shots, and was asked if I wanted another little boy. Seems the girls at the vet's office had bottle-raised three little boys after their mother was run over by a car. I said NO....very loud and clearly....but the next day I went to pay the electric bill and came back past the vet's office. Something reached out and grabbed the steering wheel and pulled me into the parking lot. So I asked if I could see the orphans.

They were all boys, all a dark tabby with that lovely circular design on their sides....

and about two weeks older than my little boy....and a bit bigger. I chose the smallest of them with the idea he might not beat up on my little one very badly. I shouldn't have worried....the little one beat his butt at every opportunity. They have become brothers, or best friends......and their names are Mischief and Mayhem. The pale grey is not Misty....he is Mischief. And they have most earnestly earned their names.

About a month ago, Mischief got up on the drawers in the closet in my work room....I heard a rustling, and picked up my handly squirt bottle to chase him down. Well, that worked just fine......but he had his head through the handle space of a plastic grocery bag......and in the bag was a cellophane bag of fried pork skins that I despise and had planned to throw away.....so he brought the bag within a bag down with him. And it made a horrific noise, I guess....maybe it sounded like something that was going to eat him.....anyway he went ballistic. Around and around the room, under the bed, under the sewing table, under the work table, under the desk and back under the bed...so fast I couldn't get a hand on him.....and he made the circuit six or seven times before the grocery bag tore and the cellophane bag fell out, but the plastic bag was still hooked around his neck.....

Now, the cat was under a double bed that is pushed up against one wall, and he was all the way over against the wall......what did I do? I got down on the floor....something my ankles don't appreciate....sat on the hardwood floor....something my sit-bones don't like....and lay down on my back to see under the bed. Yep...cat all the way over there, and he was SHAKING.....my baby was so scared! So, did I go get Fred to go under the bed for me? I did not. It was three in the morning, and besides, I couldn't let Fred be the "hero" and "save" the cat, now, could I? Nope! Under the bed I wiggled.....and that's something my spine does not appreciate.

You have to use some imagination here, folks.....I weigh somewhere around 240 pounds.....and the bed is raised on blocks so I can stash my yarn and fabric under there.....so the fat lady wiggles and wiggles and wiggles.....it must have been a riot to watch, but there was no one to see except the cat, so what the hay?

I got the bag off his neck, and eventually he came out. A couple of hours later he was all over the trauma.....it took me three days to get over the aching ankles, spine and sit-bones.....but I'm beginning to appreciate how funny it might have seemed to an on-looker......

Ardy

Mostafa wrote: How can I know if i am severe patient? Plus, if I am fine now with the medication I take, this means it will be alright later or maybe in the future I might be on a different state?

Ardeith writes: I was diagnosed in 1972.....and I'm quite sure medication is the only reason I can still walk, and can still use my hands for sewing and drawing. RA is an agressive disease and there is no cure. If not treated, it will only get worse and worse. It sounds cruel to say it, but you will never get back to the physical condition you had before it began.

You asked, "maybe in the future I might be on a different state?" That's right. In the future you will be in a different condition.....maybe in less pain while on medication, maybe in more pain even with medication. Everyone who has RA reacts differently to the medications. What works for one, may not help another person at all. The only thing that is sure for every patient is that without medications, they will become quite crippled by RA.

Those of you diagnosed in the last ten years or so have medications available to you that didn't exist when I was diagnosed. You may be able to avoid the fused joints that trouble me. My wrists don't hurt unless I do something stupid like stressing them too much......but they don't bend. It is to be hoped that many of you will not have fused joints. Work on maintaining that flexibility, folks!

I don't know how the doctors decide someone has a "severe" condition. Maybe it is called "severe" if more joints are involved every month. I don't know. And I don't know what medications are available to you, Mostafa, where you live. Can you get Celebrex, Humira, Remicade, Enbrel, or any of the other medications that help with inflammation and swelling? Prednisone drugs can help, but over the long term, it can cause weight gain and, eventually, damage your kidneys. Even plain old aspirin can help....but can cause stomach ulcers and other problems.

Nothing invented so far can ever un-fuse my joints, so I do not cling to a fantasy dream that someday I'll be completely cured.....it is not going to happen. I simply do the best I can to created beautiful things for my family and friends so that they will have that to remember me by, instead of remembering how crippled I really am.

It's frustrating for me to know I will never be able to type fast enough to get a job using that skill. Nor can I stay on my feet for more than a few minutes at a time. This closes the door on many jobs I might otherwise be good at. I cannot imagine how hard it must be for a man who could use his body to make a living....as in any sort of construction work. My greatest sympathy goes to those who used to be able to play any sort of musical instrument and now cannot.....at least I'm spared that grief.

And it is a grieving we do.....even if we don't call it that.

Ardy

My name is Jo and I am 42, married, no children.

I was dx with RA in 1998. I had the flu and several days after recovering from it I awoke to terrible pain, every joint, literally, was swollen to the size of golf balls and fire red, even the bottoms of my feet were swollen. I could not walk. My fever was up to over 102. My husband took me to the ER and the first thing they said was does she have RA? They did many tests and said it was viral arthritis brought on by the influenza. I was in the ER 3 times, admitted once and bed ridden for 6 weeks and it took roughly 4 months for all the swelling to go down. They had me on steroids and other meds I cant remember off the top of my head and of course pain pills.

As far as they told me I would never have any more problems despite the DX of RA. My joints began to become increasingly more painful and would swell, becoming very red and tender over the years, many times so bad I would just lay and cry, trying heating pads to help and took lots of motrin which didn't help.

I said something 3 years ago to my doctor at the VA and he did an RF , Sed Rate, and ANA, which came back positive. He said yes it is RA and sent me to the rheumatologist at the Indianapolis VA to get treatment, but the docs there only did more blood work, which was pos and more x-rays and then did nothing. The VA does my blood work every 6 months and it is always the same and they never do anything for me. I cant even get anything for the pain.

I use ultram for a back injury, that is my disability from the Air Force, which doesn't do much if anything for the RA when I have what I call an episode.

I went to a private doctor and he said he disagreed with both of the DX and that he doesn't treat lab results and then said he needed more labs done. He charged me $500 and told me it was all in my head! I didn't have deformed joints so it cant be RA. I got those records and found that my private civilian doctor wrote a note saying that it was not RA and that I have depression and it is all in my head.

Now my finger joints are becoming deformed, I am sick most of the time, and spend much of the morning just working through the pain and stiffness so I can get moving.

I am frustrated. I can not get any doctor to treat me. I have read the book Living with RA by John Hopkins Univ. and have educated myself on this disease. We have no insurance and I must rely on the VA system mostly, which is terrible to say the least. I am a disabled veteran.

Hope to find some support on this list.

Josephine Askren

Has anybody had both wrist's fused? My right one is and 2 years ago
they did a total wrist replacement on my left one and they had to
remove it in oct. now I have to have my left one fused. Was wondering
how hard it is to do stuff with both wrist fused? Plese help me if you
can.