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Rheumatologist appointment this Monday

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Hi all,


I see the rheumatologist on Monday for the first time and I don't know what scares me more, her brushing me off or her putting the final piece in the puzzle of my 20 year search for an answer.


My Sjogren's was diagnosed by my ophthalmologist by the Schirmer test and a quick look at my skin and in my mouth. I will need the rheumatologist to make a definitive diagnosis and to also see if my hypermobility, locked elbow joint, digestive issues, asthma, blood pressure, heart rate and other things are related in some way.


If she brushes me off then I am back on a road to nowhere and have no clue what I will do. If she tells me that she finally has an answer then I will still be in a limbo because, thanks to my Zollinger-Ellison issue, I can't tolerate any oral medications. So, I will finally have an answer but won't be able to act on it.


The doctor was kind enough to rush my seeing her (the usual wait for a new patient is 4 months, but she fit me in sooner because of my lymph node) and usually I don't stress out about things or at least try not to but I think that it is the whole "no win" aspect that has me making myself ill.



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Oh Penny, you aren't in a fun place, are you? It's got to be terribly difficult for you.


If your rheumatologist can tie things together, that's definitely a step forward.


The Zollinger-Ellison Syndrome would certainly complicate treatment, but remember that nearly every medication has more than one system of delivery. Not all of them have to be or can only be taken orally. I think I would ask for a consult with a pharmacologist or the staff pharmacist if your rheumatologist is connected with a major medical/research center. I'd also ask that the rheumatologist have a consult with your gastrointestinal expert, if I were you.


If the rheumatologist brushes you off or has no answers, you've got a few options that come immediately to mind: ask her what she would do next if she were you; ask for a referral to a specialist diagnostic team (how far are you from Johns Hopkins, for instance); find a different rheumatologist!


Got a good (pushy) friend who could go with you and be your 2nd set of ears and advocate? There are loads of us who would volunteer, so keep that mental picture of all of us standing at your shoulder, standing up for you.


Warmest hugs,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Penny,


You bring up an excellent point, of feeling stuck in a lose-lose situation.


My husband and I have both been-there, done-that, so we have revised our approach over the years. Now we like to identify potentially worrisome things (like certain doctor appointments) and attempt to imagine how we can construe them to be win-win.


For example, if my husband's lung function is worse and his pending transplant is inescapable, that is the great news, he gets his transplant now! If his lung function is better, that is the great news, he can escape his transplant for now! Or, if all our blood work is okay, that's the great news, we're healthy as a lark (ha!). If it's horrible, well then, it's about time that pesky critter showed up in a blood test, so we celebrate its discovery.


Sometimes it really takes putting your thinking cap on to figure out how to reposition things. But is is so stress-relieving that it is quite a worthwhile hobby. I always just wish I applied it to even more things in life.


I have Sjogren's (among many other things) and don't take any oral medication at all for it at present. I have this little quirk about adamantly avoiding medications whenever possible and seeking other ways around things (with the help of my medical team), since my health situation is so complex that I prefer to experience real symptoms rather than the side effects of dozens of medications. Also, I'd learned to cope with the symptoms of Sjogren's on my own, many years before I was ever diagnosed with it.


So, it's not the end of the world if you can't tolerate a pill for it. You'll surely survive, anyway, and the great part of it is that you won't be suffering any side effects from the treatment, either.


The more pesky matter is whether the rheumatologist confirms the diagnosis or not. Well, here again, "What me worry?" You want to avoid the pill treatment, anyway, right? So if they miss or dismiss a diagnosis, either rightly or wrongly, you can still treat your peskiest symptoms (drops for eyes, rinses and such for mouth, lotions and potions).


If they wrongly miss the diagnosis, well, black mark on their report card! And good news for you, as you'll get to eventually visit a better rheumatologist. And it is always so much fun to meet new people, don't you think?


You have the liveliest sense of humor there is. So put it to work for you and you could conceivably have even a downright pleasant or even hilarious rheumatologist appointment. It's never "the end" because there are plenty of other fish (rheumatologists) in the sea. Plus, you've got us, and we all understand. Been there, done that! :blink:


Keep thinking, how can you turn the situation into a win-win? Nearly hypnotize yourself with the win-win idea and you'll reduce tension and be happy regardless of the outcome of any single, particular doctor visit. They can be wrong, they often are. You can live through that anyway, probably make a joke of it, no less, sooner or later.


Never give any doctor the ultimate power over your happiness, either before or after an appointment. They simply did not go to medical school to earn that privilege. They have the right to take our money, but not our sanity or equanimity.


There now, memorize that, and go forth with confidence! You can do it and you will surely win, no matter what the doctor says or doesn't say or confirms or fails to confirm. With any sort of luck at all, they won't kill you on the spot with tests or meds, and you'll at least live to tell us about it afterwards. Remember, your goal is only to live through the appointment. What doesn't kill us, smack dab on the spot, makes us stronger!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hello Penny


Imagine us all there, behind the rheumatologist so you not she, can see us pulling faces, sticking our fingers up and being generally juvenille every time she says something you don't like. Alternatively as suggested take a vocal friend.


Either way please let us know how it goes.


Take care.



Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Penney,


I hope all goes well for you on Monday. I know how hard it is to wait and wonder if "this is the doctor that can figure this out". Good luck!



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I remember the day I married my husband, after the wedding ceremony and on the way to the reception a song came on the radio, "I'm so happy that I can't stop crying".


The chorus struck a cord, "I'm so happy that I can't stop crying, I'm so happy, I'm laughing through my tears"... (the actual song was not an upbeat one, but that one line said it all)


Reading these posts, that chorus ran through my head over and over because that was exactly what was happening. (Did you know that when you laugh and cry at the same time you make a noise that sounds surprisingly like "snork"?) I am sitting here laughing and crying, humbled and honored. You have all become so very special to me in an amazingly short amount of time and much of my fear has evaporated because you are all right, I will not be alone facing this.


It will be very very hard to be frightened when I will have so many of you behind me and others behind the Doctor making funny faces... now I will just have to concentrate on keeping a straight face! :rolleyes:


They have not managed to kill me with tests yet (though they have given it the old College try) and I am sure that Monday night I will come in here blushing at how silly I was for letting myself get worked up.


Thank you all so very much and snorky hugs to everyone!



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Hi Penny~


And just in case you need a reminder that we are all here for you, I'll be standing behind you with all of the rest.


(((Big huge hugs)))



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Hi Penny


I just wanted to wish you good luck on Monday. We'll be anxious with you and waiting to hear from you how it went! :)

Sending good wishes your way!

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Penny just wanted to wish you good luck at your appointment on Monday. I also found my first visits to the Rheumatologist very nerve wracking so I'll be thinking about you.

best wishes



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Thank you so much, everyone! (((warm hugs all around)))


I am in a much better frame of mind for the appointment tomorrow, it is hard to be frightened when you are surrounded by so much support.


I wish that my stomach had read the posts... I was feeling better about Monday by this past Friday but my stomach did not get the memo and went into a full blown flare of Zollinger-Ellison. Ugh!


Luckily, I am just dealing with the aftermath now and I can only see it as a bonus, with the flare this recent the Dr will be able to see me at my "flaring" best.


I will post as soon as I get back from the appointment tomorrow and let you know the outcome, but no matter what it is I now know that I will be able to handle it.




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