The realities of life with sever RA at 27

[nightshade]

okay so I really just need to vent.

Wednesday was my RA appointment, which as usual was sad, frustrating and just draining I guess would be a good way to describe it. My Doc is a great lady don't get me wrong and she is doing her best to help me I know that, there just really is not a lot she can do for me. One of her recommendations was that I get a cane and actually use it, at least on my bad days do to my high fall rate. This along with a very scary and frank discussions about my meds and it's progression rate which seems to have sped up quite a bit, was a little hard for me to swallow.

It has been just one think after another all week. I was passed over for a part time job at two different places because the couldn't justify hiring some one with fall issues and, the inability to stand or walk for the required number of hours when there was so many other applicants who did not have those issues. Which I can't blame there there, I wouldn't hire me, but it just sucks right now.

If my new meds if these don't work I am running out of options, with my young age I have to worry so much about destroying my organs in an attempt to curve the pain and stay mobile.

Anyway Wednesday night I went and bought a nice, comfortable walking cane. Last night I went grocery shopping, which a few hours in Walmart is just torturer. I must admit that I am embarrassed by my hardship and do my best not to let even people close to me know how much pain I am in or how hard even the simplest things are becoming. So I as usually tried to struggle though the shopping trip leaving the cane in the car. After an hour I sat down on a bench and sent hubby out to the truck to get it.

And of course I was met by the nasty stares and rude comments that I had unfortunately expected. I was greeted in town today by the same shallowness. I came home from the trip to the grocery store sat down and cried. It seems that not only do I have to deal with the physical aspects of my disease but also a lot more mental aspects then I years ago would have ever thought.

Not only do I have to come to terms with being 26 (27 in August) and not knowing how much longer I will be able to walk, my Dr is guessing between 5-10 years but she can't be sure. The shallowness of my inlaws who even after confirmed diagnosis of RA, having explained it to them repeatedly, they still feel they have the right to proclaim that there is nothing wrong with me and just because their son believes my lies I can not fool them. All the friends and relatives that give you the 100 questions and skeptical looks. Not to mention the joys of explaining it to a 6 year old boy who has already spent his whole life dealing with the things mommy can't play or do with him what is going on and why mommy cries when people we don't even know are mean to his mommy.. But now I am realizing that even a trip to the grocery store is going to be a parade of humiliation.

 

[countrymama]

Oh, how I know what you are going through!!! I was diagnosed with RA at the age of 20. It started out mild and then got bad bad bad for a period of time. I have been on methotrexate and enbrel for the past 3 1/2 years. Enbrel is wonderful for me. I have had one flare up on it. It lasted for maybe 5 months then it was gone. I have 3 children that are 7,6, and 4. When I have a flare up, I feel like such a bad mom when I don't have the energy to do everything they want. It is very frustrating because other people have no idea what it feels like. The pain, swelling and restricted movement is devastating. I have one finger that is permanately straight. I cannot bend it. Please do not let the RA take over your life!! I refuse to be defined by it. I am not RA. Please feel free to pm me if needed.

take care,
Elizabeth

 

[freemotion]

That really shocks me, nightshade, that so many people are such ijits!!! Even your relatives!

I have a very close friend who had to start using a cane at age 30, due to a car accident that left her permanently disabled. She falls, too. This means frequent injury like broken ribs, mostly when she doesn't use her cane at home.

But I remember the initial struggle and depression and anxiety she went through. Didn't help that she needed a neuro-psych exam for disability and the doc wrote in his report that he suspected she was faking it but couldn't prove it!!! This was based mostly on the fact that she couldn't read at all but could spell any word she was asked to spell out loud. Every other neurologist she went to over the years agreed that it was because those two functions are in different parts of the brain and that she was one of those home-schooled spelling bee whizzes and a genius IQ before the head injury caused her to lose her ability to read.

The reason I am telling you all this is that in spite of her constant pain, migraines, and lack of progress for many years (she re-learned to read after a couple years, and can read and write without effort now. Listening to music is still an issue, a pleasure she permanently lost, along with dancing) she has found ways to cope and come to terms and accept, and in the process, earn some money outside of disability income and more importantly for her, continue to focus her life on helping others.

Oh, and her MIL was an ijit, too, and still can be, just in other ways now.

You will shine, too.....maybe not every day, or every hour of your good days....just remember, "the world is always turning towards the morning." (a Gordon Bok (sp?) song.)

How about starting a collection of really cool canes? And decorating the plain ones?

Have you explored any natural alternatives (in addition to your meds, of course!)?

Feel free to vent here any time...

 

[miss_thenorth]

I ws diagnosed at 18. (with RA and MCTD) I am one of the lucky ones--I only take celebrex. My flare ups are random. some times last a few weeks--occasionally a few months. When I flare up--I take other meds, but celebrex works for the average day.

My sis takes methodrexate (sp) among others. She was so bad a while ago that she could barely walk. Her feet are so bent I don't know how she stands. But she has been relatively pain free for the last few years. If the pain does eventually get worse, esp in her feet--she will need surgery--but right now, since she is not in pain -- why????

the reason her feet are so bad is b/c at first she was misdiagnosed as just having osteoarthritis, so was not medicated properly.


So hang in there--it might and quite possibly will-- get better.

 

[VT-Chicklit]

Nightshade, has your doctor recomended EMBREL? It is a miracle drug. I do not have RA, but I have psoriasis. I had it so bad that better that 20% of my body was covered with raw, disgusting patches ! I know what you mean about rude people. I worked for a company that required that I change into a uniform at work each day. I got stares and comments in the dressing room about my condition. People can be so callous! Psoriasis, like RA is caused by the immune system going haywire and attacking the body like it was a disease. Embrel dampens down that extreme immune system reaction. It is a drug that needs to be used when less powerful treatments are not working, but for people who have not had success with other treatments, it is a God send. It helped me to be completelyclear of my psoriasis patches within 4 weeks. I have been on Embrel now for almost 3 years and it has given me relief and a new lease on life. It is not cheep but many insurances cover it or the company that makes it (Wyeth-Amgen) has a program to help. Good luck and have faith that you will find a treatment that gives you relief.

 

[FarmerDenise]

I have a friend who started getting fibromyalgia around her early twenties. Nobody knew about this awfully painful disease then. It took her years to be diagnosed. She had been an active and talented dancer when she was young. I met her when we were in our thirties. By then she had gained a lot of weight, due to her inactivity.
She finally broke down and got a cane, it took her a long time to go for the motorized wheel chair.
There are days when she can walk allright. And there are days she cannot get out of bed. She has a disabled plackard and you should see the dirty looks she gets, when she gets out of her car and walks to the store.
When she first got her wheelchair, I heard about a beach walkway that had been created in our area. It was designed specifically with people in wheel chairs in mind.
We managed to get her big and heavy wheelchair in my car and I took her there as a surprise. It was just amazing how nicely it was designed. They even had a park toilet big enough to accommodate her wheelchair.
My friend told me later, that she had been so depressed that day. She was ready to just give up. She didn't think she could ever go to the beach again, watch the sunset over the ocean and all that.
Her daughter, who is my daughter's best friend has fibromyalgia. She had to give up playing the piano. It was sad news for all of us, since she was an exceptional pianist at a very young age.
It helps having good friends, who even though they don't know what it is like, are willing to be there for you. Try to understand and believe you, when you tell them that you are in pain and know that you wish you could be like every body else.

I think it is nice that people can vent here and that there are others who will listen and pat you on the shoulder for making it through another day.

 

[Woodland Woman]

I am so sorry you going through all that. People can be so mean especially family. We have medical issues in my family and I have been able to control and improve them by diet. Some of us are gluten free, dairy free and /or soy free. We also eliminate artificial colors, flavors and most preservatives. We all have different supplements we take for our various problems. Have you looked into any diets that could help RA? Sorry I don't have any specific information for you.

 

[Mackay]

I had a severe arthritic condition to my knees back in '94. I couldn't walk and even the sheets touching them at night caused severe pain that kept me awake. I was in my early 40's. I went to an orthopedic doc and he did xrays that showed that I did not have osteoarthritis. He sent me to an RA specialist.

But I never went. I went to the health food store instead, one with a good bookcase and I found a book about treating RA naturally by Dr Donsbach. I ended up taking CMO as the book recommended. In a week my pain was gone and so was all the redness and swelling.

I've had relapses a couple of times but CMO brought it to a quick end, always in less than a week. I have stock piled the brand of CMO I use as it is no longer available...so unfortunately I can not recommend a product that I am sure works but from my readings I sure some do. Dr Donsbach developed the product I used but he is no longer with that company and the product is no longer available. You might look into his arthritis protocols at www.Letstalkhealth.com Since his first arthritis book he has incorporated a lot of herbs into his arthritis protocol that includes cmo. I haven't had to try any of these so far.

Then I developed an issue with psoriasis and developed psoric arthritis in one knee. This was far more painful than the RA. At the time I was experimenting with Serrapeptase for a different problem. It cured the psoric arthritis in about 5 days and it never returned, even though the psoriasis continued....I have that almost cured now too...so of course that made me wonder if serrapeptase will work for RA also. Some say it does but I have not found anyone using it for such so far. I think it would be worth a try. Seems different things may cause the symptoms of RA.



You can read about this stuff here:

http://www.healthsalon.org/392/testimonials-on-arthritis-and-serrapeptase/

http://www.themiracleenzyme.info/default.asp?p=300

http://www.healthsalon.org/392/testimonials-on-arthritis-and-serrapeptase/

http://www.healthsalon.org/381/cetyl-myristoleate-for-arthritis-cmo-rheumatoid-arthritis/

 

[sylvie]

My heart breaks for the response you have received in your community. When my Dh was waiting for his organ transplant he went quickly from cane to walker to wheelchair to me pushing the wheelchair. For some reason these devices used by anyone short of elderly elicit hostile and disapproving responses. The rudeness of people made me glad that I needed to accompany him at all times to advocate and protect him. He now doesn't accept rudeness by considering it their problem.

Your inlaws sound insensitive. If it were me, I wouldn't discuss it with them anymore, they read it as defensive. Don't dwell on stares, it means nothing; hold your head up and concentrate on walking and the task that brought you into town. To be frank, illness and disability will not garner you sympathy. (Our experience)

Employers are not allowed to discriminate against disabled: The Americans with Disabilities Act of 1990.
If you could prove that they refused to hire you because of your disability contact that agency and see what they can do for you. Find out how to qualify:
http://www.ada.gov/
In addition, The ADA reimburses employers for hiring persons with disabilities and enables them to be placed on light duty for sometimes less pay. Better than nothing.

Finally, you sound like you could benefit by joining or starting a RA ( or something similar) support group to problem solve and release frustrations and find compassion.

 

[dacjohns]

TURNING TOWARD THE MORNING
(Gordon Bok)

When the deer has bedded down
And the bear has gone to ground,
And the northern goose has wandered off
To warmer bay and sound,
It's so easy in the cold to feel
The darkness of the year
And the heart is growing lonely
For the morning

Oh, my Joanie, don't you know
That the stars are swinging slow,
And the seas are rolling easy
As they did so long ago?
If I had a thing to give you,
I would tell you one more time
That the world is always turning
Toward the morning.
Now October's growing thin
And November's coming home;
You'll be thinking of the season
And the sad things that you've seen,
And you hear that old wind walking,
Hear him singing high and thin,
You could swear he's out there singing
Of your sorrow.

When the darkness falls around you
And the Northwind come to blow,
And you hear him call you name out
As he walks the brittle snow:
That old wind don't mean you trouble,
He don't care or even know,
He's just walking down the darkness
Toward the morning.

It's a pity we don't know
What the little flowers know.
They can't face the cold November
They can't take the wind and snow:
They put their glories all behind them,
Bow their heads and let it go,
But you know they'll be there shining
In the morning.

Now, my Joanie, don't you know
That the days are rolling slow,
And the winter's walking easy,
As he did so long ago?
And, if that wind would come and ask you,
"Why's my Joanie weeping so?"
Wont you tell him that you're weeping
For the morning?