Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Post Mayo Blog

Once I started crying when Sue left yesterday, I just couldn't stop. I blubbered a bit during the appointments with the rheumy and internist, sniffled on the bus ride back to the house and then burst out in full weep mode as soon as I was alone. I threw myself on the bed and cried and cried and cried until I finally fell asleep and when I woke up I cried some more. I fixed myself some dinner, but you can't really cry and eat at the same time, so I managed to hold back while I ate. In the evening, I got my umbrella and went for a walk in the rain and my tears and the rain joined one another. My eyes got moist a few times while I traveled today and then I cried again in my husband's and daughter's arms when I got home this afternoon.

It's just so darn frustrating not to be getting any answers, especially after putting in so much time and effort. I put so much energy into last week and to come up empty-handed is a bit too much for me right now.

And it's so scary that one of the best, if not the best, medical center in the world can't diagnose me and doesn't really know what to do with me. Being an enigma means living on shifting sands without the security of the solid ground of a diagnosis, prognosis and treatment plan. Everything is still uncertain and nothing is clear, despite all of the efforts on my part.

It doesn't help that I didn't sleep well all of last week. Combine that with 19 medical appointments in five days and I'm absolutely exhausted. Add to that the fact that medical testing is a remarkably unpleasant and draining experience no matter how nice the nurses and techs are. Toss in the difficulties of the last month with my husband not getting tenure and you end up with a person who is absolutely worn out and worn down by it all.

Before everybody worries too much, please know I'm already taking depression meds. For those of you who understand such things, please also know that I am highly hormonal this weekend, a condition that adds 100 points to my Weepiness Quotient.

I'll be okay. I just need a few nights of good sleep and some snuggling in my husband's arms.

I won't give up either. I'll never, never give up doing what I need to do to feel as well as I can. Last night, I got out all of my notes from the doctors' visits and all of the information I'd been given at Mayo and came up with a list of things I need to do next, like make an appointment for Feldenkrais and write Sue a heartfelt thank you note.

Thanks again to all who responded to my blogs.

Still kicking,

Karen

PS But I did get one really good laugh in today. This morning, I took a cab from the house where I was staying to a hotel downtown where I planned to catch the shuttle to the Rochester airport. My shuttle stop was the last one in Rochester, so after I was picked up we headed out of town. Shortly after we got on the interstate, somebody asked the driver how long will the drive would take. "About an hour and forty five minutes," he answered. "WHERE ARE YOU GOING?" I asked. He was headed to Minneapolis airport! Fortunately, we hadn't gone very far so he took me back, dropped me off and picked up the passenger who was still waiting at the hotel for the shuttle to Minneapolis. A few minutes later, the Rochester shuttle came to pick me up.

Hello my name is Tina I am sorry you did not get the answers you wanted at Mayo clinic witch one did you go to I went to the one in Flordia and they were great. if you go there ask for Dr Ginsberg he is the best. I am here if you need anything you can add me to msn if you have it tolooney@hotmail.com. Take care

Well at least you didn't have to take the scenic route home..

I know crying doesn't help much, but then it doesn't hurt anything either.
Sounds like Sue is a true friend, and we only have so many of those that cross our paths in life. Hang on to her.

Hi Karen,

I have a lot of thoughts about this and they don't really fit into a narrative so I thought I would put them out as separate ideas.

1. As many people here have said, we think it's a great thing that you continue to fight this and search for your own solution. Your efforts have been truly superhuman and everyday following this we've just been amazed at the detail and your strength and we're been right there with you.

2. Even if you aren't going to get a diagnosis/cure from this, it is so great that you've now put your case history in the hands of the Mayo clinic, one of the finest institutions in the world, and your information is now part of that research. So others who follow may benefit from this. Your experiences there go into the larger pool of research and who knows how much it could help somebody in the future.

3. Only you can be the one to decide if it is time to focus your efforts from looking for a diagnosis to treating your symptoms, even without knowing their cause.

4. Perspective Inspiration Point (PIP sorry, it sounds like a deodorant): If you had, for instance, polio in the year 1800, way before the vaccine was developed, you could have spent the rest of your life searching far and wide for a doctor who could diagnose it and treat it. But since the vaccine didn't exist then, it wouldn't have helped (now I need to not only work on that matter transporter, but a time machine as well)

5. Perspective Inspiration Point: Michael J. Fox is someone who has a diagnosis of his disease (Parkinson's) but there is currently no cure for it. He'd be the first to tell you that his life is a good one nonetheless and he's devoting much of his time publicizing his story in the hopes that a cure may some day be found.

6. The Dow and Marsha story-- after our first year of marriage we realized pregnancy was elusive so we started going to clinics, etc. And it was a long, expensive difficult battle, including a fertility doctor who told us after going there for over at year, suddenly at age 43 Marsha was too old to be considered part of his program. (!!!!) Another one was the doctor who charged us $500 (not covered by insurance) to draw some pictures of fallopian tubes and explain the procedure that he would do and told us that he would treat us "like a King--Rodney King" (In retrospect that joke was worth probably 3 or 4 dollars). We know the analogy is a little different because there was a clock ticking in our case but we feel better having done our best to tackle it head-on just as you have done with your condition. We hope you will be able to feel the same way, whichever direction you decide to go from here!!!

hi karen,

i'm not sure i have any words of wisdom. just wanted to say hello, thank you for sharing all of this. i'm not sure i would have been able to hold it together as long as you did. instead of focussing on yourself, you came here each day to share with us. instead of lashing out at the doctors in frustration, you kept it together and interacted very professionally.

maybe the only words of wisdom i have right now is, when i'm at a point like you are right now, i just try to not think about any of it until i'm emotionally recharged. most of the time, i try to face my challenges head on, try to be proactive, fight the good fight. but then it gets to a point where i'm emotionally exhausted and just have to take a break from it all.

an entenmann's choclate chip filled crumb cake doesn't hurt either

,

sue

I have followed your Mayo posts over the last week and was hoping it would all come clear in the end. Not knowing can be worse than knowing - but dont give up Karen. We all care about you here.

Karen,

I'm another that has followed your blogs too. They've been very informative.

I'm sorry to hear that your trip to Mayo was not conclusive. It seems to me that it was not a waste though. I'm guessing, from what you have written that you feel the same.

I must say, your attitude in spite of the undesirable results has been great. I know that I would have shelved "the search" for probably a couple of days if not a full week. However, you are ready to get back in the thick of things.

One thing I did notice in your previous blog (VI, I think) is that you are going to try Feldinkrais. I don't know what that is, but have heard the name. Now I must go learn something about it in the next few days.

I was wondering, would you consider trying Traditional Chinese Medicine (TCM)? You would need to find a good practitioner, but they may be able to help you address some of your symptoms. I guess this popped into my mind since you have mentioned that it takes you a long time to heal or that you injure easily. They oft address, if not exclusively, energy in the body and making sure that your body is balanced and that no deficiencies exist.

Honestly, I don't know a lot about TCM either, other than I had a fantastic acupuncturist when I lived in Cleveland. Down here, I could not find anyone that could replicate his effectiveness. He was an Oriental Medical Doctor (OMD). However, I think he'd fall short of your expectations since the most in the way of diagnostics he ever did was feel my pulse, look at my tongue, observe my appearance, and ask me a few questions. No diagnosis, just helpful treatment. In fact, if the current lead which I'm exploring doesn't prove fruitful, it may be back to Cleveland for me (for who knows how long). He was the only individual that I could say helped my facial pain and provided me with significant relief/support for my AS. He was the fella I turned to back when I completely ceased taking NSAIDS (prior to finding out about and joining KickAS).

I'm guessing you don't want to trek to Cleveland, but if the experts at Mayo aren't going to give you a firm diagnosis, a skilled TCM doctor may be able to help address some of your symptoms. The only bad part is that I'm guessing that they would not be able to label you like Western Medicine likes to do. I'm of the impression this is what you desire. JMO, at this stage of the game, I find these labels unhelpful at best and a racket dreamed up by the insurers companies, med schools, doctors and other business folk at worst.

P.S. If it is any consolation, I can share a similar story. When I used to travel weekly for a job, we had a three month long project in Toronto. I was at GPI (Greater Pittsburgh) to catch my flight some time around 6am or 6:30. Well, if you've ever boarded a flight out of the E-gates (or were they T-Gates? - don't know if it matters as I believe they've been closed for demand and cost reasons), you'd understand that these gates were not traditional jetport gates (with a ramp or any stairs to the tarmac). They were just a series of doors placed fairly close together that provided access to the tarmac where commuter planes would queue up for boarding. Well, I must of not gotten enough coffee in me, been preoccupied by something else, or just had a case of the stupids that morning. I give the ticket to the gate agent (who gladly accepted it by the way), boarded the plane, stowed my laptop, and took my seat. A few minutes later a USAirways gate employee hops aboard calling my name. A bit startled, I come to attention and confirm my presence. They ask my to follow them off the plane and explain to me that the plane I had boarded is bound for Indianapolis, IN and not Toronto, ON. I felt like a complete bonehead for a few moments (much, much, much less of an amount of time as opposed to having to explain to my manager how I ended up in Indianapolis as opposed to Toronto!). When all was said and done though, I found my faux pas rather entertaining.

Happy Mother's Day!

I understand how you feel, Karen and I'm sorry you're going through it...you'll get an answer eventually but what makes me so mad about that is that usually by the time they get it right, damage is already done and irreversable, I have been in the so mad I'm crying stage before, it's a normal reaction, I think....I pray that you continue to push for an answer so you can get the proper treatment, no matter what it turns out to be, it's still something that is causing problems for you and it needs to be addressed...many hugs and high hopes....Happy Mothers Day...

Karen, it was interesting reading about your Mayo experience. They way they do their scheduling/evaluations is tops especially with difficult situations. I don't recall reading about your history but keep in mind that it can take a looong time for AS effects to show...esp in women. I'm B27+ and had all the "classic" symptoms but it took over a decade for any changes to show up on xray/mri. I've been dealing with it for 30 years now and NEVER have had inflammation show up on blood tests. Fortunately with all the classic symptoms, B27+, and a family history of AS I've been treated well by every dr and now evidence of AS shows on back and foot xrays/mri's. So just because you went through this evaluation and nothing shows up now, don't fret. You have good baseline studies and need to pursue things that help you to minimize future damage. It still seems the medical field relies on definitive x-ray changes for diagnosis aside from the other criteria. So don't leave here OK?

Tina,
I went to Mayo in Rochester, Minnesota.

I thought my rheumy was pretty good. It's hard to diagnose a person with anything when every MRI, X ray and other test is normal, but I'm glad you found a good rheumy also.

Karen