Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user needs help

Hi! Welcome to the blessings of finding a site with other WOMEN that know what that "I can't go on like this" feeling is. No offense, guys, you get it too. I get it at least once a day, whether or not I voice it out loud to anyone, and I just recall what my husband said to me one day, which was, "can't we just try to cope with this in this moment right now and worry about THAT later?"

It's a good thing to remember. The world is not ending at 5:05 tonight if I don't get something done.

The way we have been brought up to believe is that one gets sick, goes to the doctor, and gets appropriately medicated to cure or relieve symptoms. The reality is, one goes to the doctor, gets blown off, goes to another doctor, gets ERLWAE 'd,* goes to the next doctor.....finally get diagnosed, told I was basically a lost cause and told to take something over the counter and come back next year....really inspiring.Not. During a bad flare about a dozen years ago I was finally sent to a neurologist and a physical therapist by a doctor who LISTENNED to me when she noticed I didn't move normally during an exam for a totally unrelated problem. At the end of the month I went back to her(another first, she'd actually requested another return visit to get feedback on what she wanted me to do!!!!) and she asked "is it helping?" "yes" "good, now go back for another month of physical therapy." She understood there is no "fixing" this but there are ways to get the patient functioning better. The neurologist was amazingly forthright and told me my neck IS a mess but surgery should be avoided as long as possible because it would not do anything for the pain but just stabilize the vertebrae. I had personally spoken to three patients of his he HAD done surgery on (with good results, they said this guy was the best doctor they had ever gone to, which you almost NEVER hear about neurologists) so if this guy didn't think cutting on me at this point would do any good, I wasn't going to dispute him. Unfortunately I also am asthmatic so doctors are extremely reluctant to just willy-nilly prescribe medications for me which may work just fine for regular people. So I had to get over the idea that there is the Ideal Medication out there, I know it's out there, and I'm probably going to be allergic to it with my luck. I am allergic to muscle relaxants, for example, which a lot of people here get relief from at night. I am AFRAID of muscle relaxants! I don't want to feel that reaction again! Yikes!
Last year I went to 4 different doctors at my "EX" hmo and told all of them this arthritis is starting to move into my hips big time and got 4 blow-offs. When the last one refused to look at my hips,(actually, he was the nicest one, he at least wanted to look at my neck. We all know our neck is directly connected to our hips, don't we? The fattening food bypasses the stomach and gets directly deposited there!) I cheerfully limped back out to the parking lot and called the hub to change over the insurance. Enough! Chances are when I find some doctor willing to admit that indeed She Does Have Something Wrong With the Hips he's going to look at the allergies and shake his head and mutter sympathetically that There Is Nothing We Can Give You. At which point I hope I am having one of those Zen moments so I don't whack him upside the head. Sooner or later, I hear they get bad enough one can get NEW ones, in the meantime, I am out of factory warranty on the original equipment but not in the scrap heap because of regular maintenance. Since I exercise, I can still move, it just hurts all the time. But the sitting is a trip.
So about the only realistic thing I can do at this point to help myself is to not eat things that make me feel worse (I do have a reactive arthritis that was set off by infection so the LSD/NSD diet thing does make a difference for me. I was just amazed to find a websight with other people doing this with the same results, I was throwing things out of my diet that made me feel ill for several years prior but couldn't see the grand pattern of it....oh....it's the STARCH, duh!) and keep doing the exercises so I at least keep function for as long as possible. I am very fortunate to be married to a man who is very supportive of me emotionally, but I also have to remind myself to leave my feelings of frustrations where they won't hurt him. As in, if I feel really, truly lousy, don't yell and scream at him. Sometimes this can backfire, as when he is having one of those obtuse male moments and I say something to the effect of "are we going to do this in this lifetime?" and he goes..."now I know you are feeling bad" ....this will usually set me off bigtime if I am feeling okay and he STILL has not done something he said he was going to do three hours or three weeks ago...
not all sarcastic female inquiries are based on pain levels. Some of them are based on multiple trips to the hardware store to fetch more pieces and parts. I like running errands, but c'mon, measure first. Please.

Anyway, attitude is a big part of it. With the right mental state, you can do more with less. I wish doctors would realize the harm they do with the "it's all in your head" tactic. Fortunately I had a good doctor in the past (we moved to another state, sigh) who explained things to me well enough I can tell when I am being bull bleeped now. Of course, if you are a living being, and you have physical pain all the time, there is some sort of disease process going on. What the heck is the problem with admitting it? It's not all self-inflicted, it's an INFLAMATORY PROCESS that does NOT show up on x-rays! Only the damage shows up on x-rays! Remember that, knowlege is power. I hope you can read thru this websight and get some ideas on how to best approach the next doctor so you can find some relief.




* Eat Right Lose Weight and Exercise.

Hi Amy,
Just thought I would put my 2 cents in.
Like it was said...you have to try alot of pills until you find the one or ones that works for you, well, the same goes for doctors.
As you will find out from looking through the posts here...most of us have gone through dozens of doctors until finding a good one that works for us.
Your medical history along with your families will play a big role too in getting the right diagnosis, especially a woman.
Because you have had bad luck in the past. When searching out a new one..
I think before giving him your records, you should explain in your words what you have been dealing with and also that there is a family history, then let them come to a conclusion or at least an assumption before getting your records.
If you let them hear you first, then they aren't clouded ahead of time with what your past doctors may or may not think, which they will have written in your records. That's a suggestion anyway.
Regarding how big of a role doctors play in the management of our disease...
I think they play a big role, at least in the beginning because without a good doc, you can't get the correct meds you need or help with pain control. Afterwards, it's just basically follow ups and blood tests if your on certain meds and refering you to other specialist that you may need in the future, because of the other problems AS can cause...directly or indirectly. This is been my experience anyway.
There are still alot of docs out there that believe that woman don't get AS, because they are still reading the old books, so this is one of the big problems for us woman. Unless you have radiographical changes on xray, they pretty much blow you off, but not all are like this, so you have to do your part in searching for the right one. It can be difficult, but worth it when you happen to come across one.
For the most part, you have taken a big step in finding us because here you will learn what others have been through and how they have dealt with it. The knowledge here is the best...better than 100 docs put together, but even better than all that, you'll find a great deal of support. You don't need to do this alone, and with two children the ages of yours and the amount of pain that your in, you really need to reach out and I am glad to see that you have.
I hope you stick around and find the answers you need to go further.
Take care,
Lisa

Hi Amy!

I've been taking Voltaren (about 15 yrs) + enteric-coated Sulfasalazine (about 10 yrs) which has significantly improved my situation. Now (at 40 yrs), I no longer feel like I'm 90, but rather like I'm in my late 50's .

I consider my Rheumatologist a very important player in the management of my disease. I'm one of the few women (in here) with a success story in early diagnosis (dx'd only 2 yrs after onset), and he has been consistently good; helping me determine which drugs to try, informing me about various side-effects, keeping track of my blood work, hospitalizing me when things got really scary, sending me for x-rays and bone scans, suggesting I get a bone density test as a benchmark, regularly checking my flexibility and listening to my heart, sharing info with my GP and Opthalmologist, plus keeping me informed regarding new research.

Our relationship and ability to communicate didn't develope overnight but rather over years. Doctors are like every other person on the planet,... they care for you more as they get to know you better,... though I'll admit, I liked mine the moment I met him - first impressions are important! Finding a doc you feel comfortable with is key, and I wish you the best of luck in your search!!!

mig