Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Am I crazy...

...or left without a choice?
We all know that good health care has a lot to do with what type of medical insurance you have. If you don't agree, you probably have really great medical coverage.
With that said, let me get to the point of this post.
For many years I have had some symtoms of AS. Of course I never knew why I was different, but I knew something was definately not right.
It started with my imune system,(lasting illnesses and inability to heal).Then it was my right hip,(felt like it was going to disconnect itself). My eyes have always been unusually sensitive, but I never thought much of it.
Now I have severe sacroiliac pain, neck pain, pain that radiates down my right leg starting at the hip. I have severe headaches and eye pain in the sunlight, horrible unexpected fatigue, loss of appetite, pain and swelling in the groin area and shoulders that snap crackle pop constantly.
I've seen doctor after doctor and had test after test. In the end, I never did get a diagnosis,(symtoms began 20 years ago) and the medications they had me on were killing me, I'm sure. So...
I quit! Until I can afford a decent doctor, I've decided to tough it out,(no docs or meds for about 4 months now). It sucks, it hurts and maybe I am crazy, but what choice do I have?

Chrissy

Heyyyyyyyyyyyy Chrissy!!

You are most assuredly cRaZy!!!

But that's what we LOVE about you!

Don't change a thing!!!!

We all chipped in to get you this lovely T-shirt so the whooole wide world would know!

But seriously............

Your story sounds a lot like mine. I gave up like you for three years. Finally, the pain got so bad that I could not stand it anymore. I was at the end of my rope. Suicide was an option! I'm too much of a coward to actually ever pull that one off successfully, but it crossed my mind more than once. Once rationality came back to my peanut-sized brain, I threw myself on the doorstep of a rheumatologist. He prescribed Enbrel and my life has taken a 180 - BIG TIME. I'm not getting any money for endorsing it! I wouldn't take it if they offered. The relief I'm getting from this med is better than any monetary compensation they could ever throw my way. You don't need to afford any kind of fancy doctor. Any doctor with a book full of blank prescriptions will do! If not Enbrel, one of the other biologics might work for you! (i.e.; Humira, Remicade). Hopefully you have insurance that will cover it!

Best of luck!
Michael

Hi Chrissy,

You can't be crazy. You sound too much like most of us on this site and if you were crazy, it would mean that we were similarly afflicted.

I'm sorry to hear that the cost of medicine is at the point where it does affect your decisions on what to do next or what to do first. Let me suggest that the first thing you do is to see an opthamologist to have your eyes looked at. If it is Iritis, you should not wait to have it checked out as it can lead to further complications with the eyes so please my dear, check it out.

The second action you may decide to try is going on the No Starch Diet. It is working well for many of our ASKickers who have been able to stop most of their medications. If you want to explore it more, visit the NSD section or just ask for help and you will quickly get it from some of the people who have been successful with the diet.

Are the Doctors, that you have seen over the last while, mostly Rheumatologists? If not, they are the ones you should be seeing. Before you go to the next Doctor, spend some time on the new medical section that was created at KickAS and it will provide you with some important questions and concerns to present to the Doctor. Again, just ask the questions and many people will jump in with all sorts of suggestions for you.

There may be choices for you and hopefully, some of our members from the state of Washington will have some ideas in that regard.

Good luck and don't give up. Once you join this group, you are obligated to really Kick AS.

Take care,
George

Michael,
Thanks for the shirt and the laugh. Needed it. Fortunately, suicide is never an option for me. Three beautiful children make that thought impossible. Then again, watching mommy fall apart is never a good thing either. The problem with treatment isn't so much the medication as it is the doctors. Once I tested negative for HLAB27, my rheumy wouldn't give AS a second thought. He sent me to a sports rehabilitation guy who only referred me to a PT in which I'd have to pay out of pocket. With all the medical bills piling up, what good is that going to do me? He also wanted me off the pain meds, leaving me only piroxicam as treatment,(the piroxicam didn't do a damn thing). If somewhere along the way I find a decent rheumy Yipee! In the mean time, I'm just going to tough this one out. Thanks for your thoughts.

Chrissy

Oh George, I'm not giving up. I've given up on the doctors maybe, but I'm still fighting. Tis a lonely battle though. I have started my own excersizes and have changed my diet. A few months ago I was stuck in bed, but now I spend much of my time gardening...something I thought I'd never get back into. I spend a lot of time researching too. If I can't get any answers from those bone headed doctors, I can certainly find answers on my own. I suppose I will have to give in and see the eye doc though, I've always had a sensitivity to light, but in the last weeks, it's down right painful. I know I have AS. The eye thing was just the last of many matching symtoms. I just wish I could get someone in the medical community to agree with me. Hopefully someone in Washington will read this and know of a good rheumatologist. Thanks for your concern. Don't worry, I'll kick AS with or without a doctor.

Chrissy

Hi Chrissy

I can sympathise about the medical insurance.
Here in Canada, we are coverd for our trip to the doctor. This is great but it stops there. Without extra insurance, we have to pay for prescriptions ourselves. Therefore, expensive drugs like Enbrel etc.. are out of the question.
So I realise that I am better off than you in that I can get a diagnosis and I can certainly pay for inexpensive prescritions but the $1500 or whatever per month ones are not possible.

Hi Chrissy,

Welcome to KA. I do not think I have seen you post before. Sorry to hear you are having a rough time of it. Medical care is so important especially when you have a chronic illness. Being in the situation you are in have you thought of trying the NSD or LSD? It might help reduce some of your symptoms and it doesn't cost anything since you have to eat anyways. And no you are not crazy just frusterated and in need of some help. I hope you find an answer . Just don't give up. Keep posting. There is always someone here willing to listen, offer advice or suggestions. Take care.

Deborah

Hi Chrissy,

we're all crazy...this sounds like my story in a way.
Doctors like dealing with yuppies who have minor aches and pains;
complex stuff just throws off the allocation of your ten minutes of their time.
My primary care physician told me he'd take care of my tummy and my car
crashes, but the other stuff was beyond him and I already knew more than he.
you're in this fight, might as well try to win.
aloha Ben

Sounds like my story, I went without meds because I was so fed up with having to take a handful of pills that didn't get rid of the pain, only took the edge off, and always made me feel a bit sick to my stomach. Then I hit a wall, I remember it, it was October of 2001, we had 8 maple trees in the yard and I was out raking, determined to make a dent in the leaves before the snow came. And I was in so much misery I couldn't do it, absolutely could not rake another leaf, couldn't even stand up. That's when I asked my PCP for a referral to a rheumy. Luckily I got a good one, he DXed me in about ten minutes based on history, symptoms, that range of motion thing. The next few months weren't fun, however, I had to go through the gauntlet of approved meds, cheaper meds, before the insurance company would allow coverage for the new DMARDS. Took me a year to bomb off all of them, a miserable year, felt like a lab rat. Then Arava and blessed relief! But it seems so ridiculous that the older, less effective meds, often with more side effects, have to be gone through first, when I think the new meds should be the first line of defense. And the only way I did get Arava was my dual DX of RA and AS, my rheumy put it in for RA. If I didn't have good health insurance I'd still be stuck in that very bad pain place.

I really got a chuckle out of that tee shirt Sometimes I think we're all crazy. Does AS affect the brain????

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs always think your cooking is wonderful