Ankylosing spondylitis

Who am I?

negativeThe last blog got me a lot of negative comments and I just needed to say a few things to those who think I’m a “Mean” or “Bad” or “Selfish” person. What I do as a therapist IS a reflection of who I am out of work. I treat each of my patients with respect and caring as I would my own family. I never tell them anything I wouldn’t tell a friend or family member and never act to demean them in any form. In my last post I talked about telling them about who I was and how my disease effects me, which they don’t see. And yes maybe that is wrong when in a professional role. What I neglected to say is that by the time I had my little “blurt” I was very close to these people. How many health care providers do you have home numbers for? How many, if any, can you call when you need someone to talk to? I will venture to guess not many. I have put myself out there to help my patients just like I would hope others do when my own family needs help. But we all know that not all providers are empathetic and most could care less about us after we walk out of their office. There are those, like me, who do care and we get persecuted for caring. These patients I work with I care deeply about because that is what we should all be doing as HUMANS is CARING. The other point I want to make is when I tell patients about my health I’m telling them as a friend not a therapist. I wouldhats never cross that boundary and only some of them get this “treatment”. My therapist “hat” is off and my “human” hat is on when my blurting occurs. I have found, especially writing this blog, that there are people in this world who want help but don’t like the help they get. Then there are others who want help and don’t know how to go about getting it. We all talk about how bad health care providers are, but have you ever thanked the ones who take the time to listen to you, are sympathetic and feel empathy towards your situation? I can’t count the thanks I have gotten from patients for listening to them and feeling their pain as if it were mine. Yep I have gotten booted to the door and told to never come back a few times but it wasn’t because of who I am or what I said, but because of who they are. They didn’t want the help I could give. They would rather lie in their own misery and that’s just fine by me. You can not help those who don’t want to be helped! And no they never knew about ME! unfollowSo for the people who read my blog and do not agree with what I say then please feel free to unfollow me, I won’t be offended. My intentions in writing this blog was to document my life as an individual with AS not as a leader who’s words should be followed as if they were the gospel truth. My journey on the AS train is not one all should follow because we are all different. What works for me isn’t necessarily going to work for everyone. I live in a world of my own making. I listen to others opinions and then take some of what they think, if I agree, and form my own opinions. We should all do this and not condemn others for what “they” feel and think. We are all like molecules each different from the other, no two molecules are the same so how can what I do and say be judged as not “right”? We are all perfect in our skins no matter what we do, think or say! judging signature .

21 replies »

  1. Good blog. I agree, I have always explained to my patients how to adjust the goal with what we have at hands to be sure to achieve what we want , every progress whatever small they are makes a day.

  2. Thank you.
    I have AS and have had it for over 40 years, I go to Doc after Doc to get help to relieve the pain of day to day living. All I get is clinical “who ha” and told take this drug it might help, if not we’ll increase the dosage. Right now I’m on Tramadol, Norco and other meds to help with pain, heart problems, muscular stiffness, water weight, and general swelling.

    It would be nice to have a Doc or therapist tell me ways to help with this cockamamie disease that they know works and not just what it says to do in a book.

    Most of the time I feel left out in the cold and alone.

    I look to the medical profession for help and find no one listening or taking time to explain or care about me. It’s “come in how you doin'” take these pills and come back in 3 months.

    Sorry for using your shoulder to cry on, but, your post helps.

    Thanks
    Gordon

    • Gordon, you are always welcome to use my shoulder to cry on. We all need that every now and then. I feel your pain when it comes to docs that is why I started trying all the crazy things I have tried, well they may not be crazy but some think they are. I would suggest you find a person who is either a Physical therapist or a personal trainer. They might be able to get you on a program to help. The other thing I suggest is trying a diet free of gluten and low starch. I know you have probably heard these things before but it does help in more than 90% of all cases I’ve seen. When looking for a therapist/trainer find one who knows about AS or at least has the gumption to look up what it is. If they have the right back ground they might be able to come up with a program. Hang in there and let me know what you decide to do. I am not a doctor but I’m willing to listen!

      Joyce

      • I am amazed at how little is written about the real cause of this disease, and a very real protocol to put it in remission
        Micah Cranman’s publication “Living A.S.Free” which expands on Dr Ebringers research is clear and correct. The immune system responds to the Klebsiella bacteria leaking out of a porous intestine. The bacteria has a similar DNA marker as the college in your joints. The immune system attacks the bacteria as it should, but also attacks the joints The only way to stop the response is to reduce the bacteria. Starch feeds the bacteria.
        After years of suffering, and being partially stiffened by the disease with no real help from a Rheumatologist, I am virtually symptom free.
        I exercise regularly, but not every day, and take a natural curcumin based anti-inflammatory. No biologics, no NSAIDS. It works and every AS sufferer should take this positive step, rather than learning how to “live with the condition”. The Paleo diet, is a great way to cook and eat, without feeling the loss of the pizza and pasta that so many won’t give up, but is absolute poison to our bodies. It may be a struggle, but its not a sacrifice. Eat Well feel better.
        Neal H

    • I didn’t realize there were so many people with this disease! I never knew what it was. When the Dr.s would ask me my medical problems, I couldn’t pronounce it, so it doesn’t go in my chart! I have had it for over 15 yrs. My 1st back surgery found this disease when my bone was sent to a pathologist. They couldn’t tell me much about it. All I was afraid of was, ” so am I gonna have to repeat this surgery again if these bones grow back ?” They did not give me an answer. I’m glad I found your blog. Mainly because I now know I’m not alone or crazy! Thank you all.

  3. Maile welcome to the world of pain and anxiety. Joyce, needa professional opinion, everybody else please toss in your 2 cents.

    I need relief from the winter barometric changes daily (Detroit). Physical therapy does not work. Would a home Infrared Sauna help? Does Massage Therapy help?
    What about moving to Phoenix? Would moving anywhere do any good.

    Thanks, I’m getting more and more limited to what I can do DAILY.

    • Sorry about your discomfort 😁 I don’t know much about infrared sauna therapy but give it a try. Have you tried pool therapy? Being in Detroit this time of year you might get some relief being in a pool several times of week doing walking, trading water etc. you really wouldn’t need a therapist if you did it on your own and you can look up different ex that can be done. I found treading water helped me when I was in a pretty bad flare. Let me know what you try and be well.

  4. Joyce, interesting to run across your blog. I have AS on my diagnosis from the many scans I’ve had but since it goes along with my many other diagnosis no one has ever said much about it. I retired early because of my health and proceeded to put that at the fore front of my retirement career. Fortunately I started with yoga, had a fabulous instructor and now instruct myself. I’ve developed a routine from all that to help my issues. Even though I’ve gone to specialists, I’ve not had much help except from my physical therapist. But I can not afford to see him regularly.
    I have found that regular exercise along with rest, yoga, water aerobics, movement and rowing plus massage therapy are keeping me moving.
    The more I read the more I learn and incorporate into my lifestyle. It is a daily thing and I can not let up. No matter where you live the water aerobics can do a lot towards making you feel better and stronger, but you can not neglect some sort of weight program.

    • Thank you for stopping by and reading. I agree that an exercise program helps with combating AS, so glad you found one that helps you. I have tried yoga but like much in my life I start feeling good and forget what got me there. Good luck to you on your journey of good health.

  5. THIS IS SUCH A TERRIBLE DISEASE. I STARTED HAVING SEVERE PAIN IN MY SACARILIAC JOINT AT THE AGE OF TWENTY FIVE AND DID NOT KNOW WHAT WAS WRONG WITH ME. IT WAS ONLY YEARS LATER WHEN I FIGURED OUT THAT I HAD THE SAME DISEASE AS MY BROTHER AND FATHER HAD, WHICH WAS (AS) WHICH WAS ALWAYS DESCRIBED OF AS ARTHRITIS (FOR MY BROTHER IT WAS JUVENILE ARTHRITIS). HE HAD HIS FIRST FLARE UP AT FOURTEEN YEARS OLD. I HAVE ALWAYS TREATED IT WITH BALLET, YOGA, AND NOW AT SIXTY TWO WITH WATER EXERCISE OR SWIMMING. IT IS THE ONLY RELIEF I GET. I AM A COMPLETELY DIFFERENT PERSON WHEN I SWIM IN ANY FASHION EVERY DAY. I SUGGEST THAT PEOPLE WITH SEVERE PAIN DO TWO THINGS THAT HAVE GREATLY HELPED ME: 1. GET INTO THE WATER IN ANY WAY FOR AT LEAST HALF HOUR TO ONE FULL HOUR PER DAY AND 2. KEEP YOUR WEIGHT DOWN WITH PRIMARILY LIGHT FOODS, CHICKEN, TUNA, AND FRESH VEGETABLES, SALAD, FRUITS, AND NUTS. YOU ARE NOT ALONE BUT MUCH OF THE TIME IT FEELS THAT WAY. I AM ALSO EXTREMELY LUCK TO HAVE A VERY UNDERSTANDING HUSBAND OF THIRTY THREE YEARS WHO UNDERSTANDS MY SEVERE PAIN AND FLARE UPS WHERE U CANNOT HARDLY BREATHE OR MOVE. IT IS TRULY TERRIBLE. I AM VERY LUCKY.

    • you’re on the right track with the swimming, add the low or no starch diet and a good curcamin supplement (curamed)375mg/day minimum

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