Deep breath...here we go again. Mayo, take 2!

Welcome Back Sarita- I think.  I'm sorry things haven't been going you're way lately.  Maybe things will turn around soon.  Wishing you and your husband all the correct answers. -Gayle

dang, Sarita, good to hear from you but sorry things are crummy. big hug, YP

WRONG ATTITUDE, Sarita? about your upcoming Mayo visit, I mean. Go to that appointment w/the expectation that THIS time they are going to come up w/some answers AND an effective treatment! THIMK POSYTIVE!

And RIGHT ON! You're totally right that reaching out to others and empathizing or encouraging them helps us as much as it helps them. (((hugs)))

Sarita I was just thinking about you yesterday, and was wondering if you had gotten married yet? Sorry you have been so ill. Hopefully these tests will provide you the answers you need and you get feeling better soon. Glad to see you posting again. (((BUG HUGS)))

Welcome back. I agree the stress could have made your CD worse. karen

Hi Sarita: I suspected that no news was not good news. I'm sorry you have been so miserable, but I'm not surprised that, as your symptoms have worsened you have chosen to wall yourself off instead of reaching out. Do you find it interesting that you see your role on this board as a giver of support rather than a seeker of support?

It's been my experience that we cope with our health issues the same way we cope with our lives -- one of the reasons that people with similar clinical symptoms can vary so dramatically in how they live with their disease.

My sense is that you are a coper. You get up each day and you put one foot in front of the other and just get on with it. You also strike me as someone who takes great pride in being competent and reliable. Your friends know you are someone they can rely on. If you say you will do something, it will be done -- no matter what the personal cost. Maybe that's why as your symptoms have been spiraling out of control that you retired from the board. You didn't have the energy to give the wisdome and support all of us on this board expect from your posts, so you just went quiet. But Sarita, isn't ok to reach out for support too? It's ok to say "I'm sick".

Is it safe to say that you live a lot of your life in your head? Do you rely on your intellect? If you just work hard enough do you have the sense that you can figure anything out?

All of these qualities are so admirable, it's hard to add a but ... but, sometimes our very strengths serve only to magnify our pain, exacerbate our misery and ultimately may block our path to recovery.

I've come to realize this is true for me and I wonder if it might resonate for you too. At some point in the process of managing my illness, all of those traits that I called upon to allow me to continue functioning at a very high level, despite significant disease activity, became engrained behaviours instead of considered choices. I continued to play the role of being the strong one, the competent one, the reliable one long after it had lost its functional usefulness. I used those qualities to live in a state of denial, as though by force of will alone I could will my disease into submission. They were like a whip that I beat myself with. I was locked every day in a mortal combat with this disease for control of my body. I didn't give an inch, forcing the disease to bow to my need to continue to fulfill the role I wrote for myself. Oh, there were plenty of times when the disease got the upper hand, but always on my terms. After the big project was completed (even if it meant working nights and weekends and extending workdays at both ends to accommodate those times when the disease just couldn't be bargained with) After the conference where I had to give the panel presentation. After the board meeting

I did a lot of compromising with myself and my family in order to play the role. Of course there reached a point of crash and burn for me. After 25 years and many dances close to the precipice, I awoke to the realization that I just might kill myself if I continued along this path. And I made a commitment to change. Two years of psycho-therpay and a lot of self-analysis and hard work (I can always be counted upon to work hard) and I think I can once again see all those still inherent qualities as strengths again, no longer weaknesses. I'm using my strengths now consciously and in so doing, now I can say that I am self-reliable. I have learned to live with my reality and use my strengths to work hard at making me as healthy as I can be with this dd. To do that I've had to learn how to say no, loudly and clearly. There are no end of people with ways to spend my precious energy.

I rarely beat myself up anymore when I am sick. That used to be the worst of it. I couldn't use the word sick, so I described it as lazy when I would crash. I wonder if you are sometimes hard on yourself? I hope not. You're coping with so much stress right now. I can't imagine what it must be like, the not having a diagnosis.

You are just at the beginning of living with illness Sarita. I know you are feeling overwhelmed, impatient, angry with the system and maybe even with yourself. I sincerely hope that you can use all your incredible qualities to support yourself throughout this difficult process, even when to support yourself means giving up control (temporarily), extending your hand and accepting the help that I'm sure is out there.

Can you just tell your doc at the Mayo, "I am sick. I need your help. I will work with you, I will be a partner, but I need you to help me sort out this mystery."

Just for a little while let your doctors carry the load. It will always be there for you to stack back on your shoulders, but everyone deserves a rest now and then.

You are such a source of knowledge and common sense for the members of this board, Sarita. But we are honoured to help you carry the load too.

Sarita,

It just never ends, does it? I hope you get an answer THIS time! Please take care & don't let it get to you.
<<<HUG>>>

Sincerely,
Matthew

Sarita,

Thinking of you and hope you get some answers soon...you deserve them. I hope you're diagnosis and treatment plans are just on the horizon and you'll start to feel better soon.

Bev

Amazingly, I was not looked at as if I had three heads.

The doctor here was superb.  What a kind person.  He is doing some other tests - breath test, SIBO, motility study.  But instead of doing another scope, he's going to get the actual samples from my last one and have another pathologist look at them.  Then I'll go back to infectious disease (he says malaria is likely to be causing my fevers).  The biggest thing was that he said he was probably going to put me on Entocort, which no one has tried before.

I am seeing a nutritionist tomorrow as well to try to get some weight on.  Will keep everyone updated.  And belleenstein, I'm still thinking about your post :)

"Bedside manner" used to be a VERY HIGH PRIORITY at Mayo Clinic. They INSISTED upon it in their doctors. I noticed the last few years that maybe there isn't quite that much emphasis on it there as there used to be. Or maybe I've just gotten crankier thru the years! I've noticed w/my husband's orthopedic surgeon and w/my current Mayo gastro that there isn't that outstanding empathy and personal "touch" that all the Mayo docs I've encountered in the past had. I flat out didn't like my husband's orthopod but then I don't do well w/the orthopedic personality to begin with altho I loved my grandmother's Mayo orthopod. My current gastro is okay. He's one of their most respected researchers. I tend to think he might do very well w/male patients but ...... like I say maybe I'm just getting crochety in my old age and it is just me.

Hey Sarita,
When we didn't hear from you, I wanted to believe that you were newly married, off on some fablulous honeymoon, and feeling wonderful. I can make a new psych term.."transference denial!" It's just that I like you so much... I wanted to imagine all good things. I'm so glad you are at Mayo...you need a new set of docs, maybe looking at things from another perspective...I hope you get well and get some answers soon!
I was doing fantastic for a few months, but I've gotten sick again. It's almost harder this time around...I was so enjoying my healthy busy life, it's hard to fall down again. I'm isolating myself too, I'm just tired of talking about illness! Sending you lots of hugs and hope!! Your pal, Gumby

Sarita, I hope this doctor is able to fix what has been ailing you. Could it be possible that malaria is the cause of all your medical problems? (malaria?? Have you traveled to far away places?) I hope you're feeling well soon.