Finally Got Into Rheumatology Triage

[nvsmom]

sending you positive thoughts right now!  I'm sorry your appointment did not go as planned, but I like how Gemini thinks, "Tomorrow is another day!"  

 

I tend to revert back to being a little kid in a doctors office too and feeling inferior, but with the past few appointment I've gotten better.  Something that is really helping me is writing out all of my questions, concerns and observations.  I totally suggest doing that if you don't already   So far I've done that with my ob/gyn, GI and dentist.  They've all been really receptive to it.  I've had a few weird reactions at the dentist's office with materials, and the latest one was yesterday.  When he asked what was going on, I brought out my list, and he was really happy I wrote everything down.  He thinks I reacted to the adhesive holding on my temporary crown.  I tend to get flustered easily, and writing things down helps me hold it together and give all the facts.  Well most of the time.  I get overly emotional when I don't feel well, and I have cried twice in a doctor's office...not my finest moments   

 

 Something else is the obligatory blood pressure check at the beginning of appointments.  My bp tends to be really high at the doctor's office.  In fact my ob/gyn made me come back for a 3 month recheck, but I had bought my own home blood pressure machine, and it's always normal at home, so we concluded it's white coat syndrome    then they usually make a joke about why don't I like doctors, and it leads me into this story.  One time in high school my ear began hurting, and I went to my GP.  He made me feel stupid for coming in after it had only been hurting a few days, but because my sister is one of those people that had lots of ear infections and has tubes in her ears, I don't take ear pain lightly.  I think he was just having a bad day because every other time I've seen him, I've gone to him since I was two, he's been so helpful.  That one time he made me feel so stupid, and I still remember how he made me feel.  That appointment is what led to me now dragging my feet every time I think I should go to the doctor.  I've never been a person to run to the doctors for a sniffle, but sometimes I wait too long and am in such pain, I'm crying.  Gotta find that happy medium   

 

When I tell current nurses/doctors of my one bad experience, I don't go into the details above, they have been more receptive and understanding.  In turn, I feel much more comfortable sharing my symptoms with them.  I've been able to have better conversations with my doctors instead of it being so one sided.  

 

I really think having everything written down is the best thing I've done.  It shows them I'm prepared and trying to find a solution.  

 

As upsetting as today was, don't let today get you down because you're better than that   

 

I think of this quote often,

 

 

“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

-Maya Angelou

 

I think doctors should read it before going in to see every new patient   

Thanks for the positive thoughts.  

 

I actually did have all of my symptoms with dates, labs and treatments typed up on a two page time line, along with photocopied pages of old labs (ANA's, coombs test, blood counts, celiac and thyroid) for her. Unfortunately, she refused take or look at my time line, although she did look at the old labs... I think she is a "live and die by the labs" sort of doctor (based on my 15 minute first impression).   

 

When I saw the rheumy triage group weeks earlier, I also had all my history written in notes, and the said I gave a good history, I just didn't have it all typed up as it was a last minute cancellation that I got in on.

 

I don't know why I get flustered. I haven't had a negative experience like yours, just lots of the non-helpful variety. I think it maybe comes from having to go and ask for help - putting yourself in someone else's hands... I HATE doing that. I'm not good at asking for help so going to a doctor s putting myself out there in a way I am not comfortable doing. KWIM? I come from stoic German and Ukrainian stock.  LOL 

[nvsmom]

I'm sorry to hear about your bad experience with the Rheumatologist.

 

I saw a gastro enterologist last week and he dismissed any links with pain and Celiac.

He said I don't have the Celiac profile.

 

My kind PCP wants to send me to a rheumatologist  but I was hoping to be scoped at both ends

in case I have intestinal inflammation as an explanation for my pain.

 

The specialists are so focus on the one organ that they don't see how it connects.

 

Your positive EMA says you have Celiac.

You should read more about the positive ANA.

 

Eat well and good luck.

Thanks Marcus.  

I agree, I am a celiac and have been for my entire life. I have absolutely no doubt about it, and I don't plan on ever doing a gluten challenge so I can be scoped for that "gold standard" proof.

 

I know that my ANA could have been caused by ITP. I was going to say it could be caused by my Hashimoto's too but apparently according to her, I don't have that now, so I guess hashimoto's could NOT have caused my positive ANA.      LOL

 

Good luck with your scopes.

[powerofpositivethinking]

i'm glad you had everything written down    I agree about giving someone else the control...it's hard   I respect doctors and all the training they've gone through, but you are the only person that knows your own body, no matter what those labs say!  

 

Hope today is better!!

 

Thanks for the positive thoughts.  

 

I actually did have all of my symptoms with dates, labs and treatments typed up on a two page time line, along with photocopied pages of old labs (ANA's, coombs test, blood counts, celiac and thyroid) for her. Unfortunately, she refused take or look at my time line, although she did look at the old labs... I think she is a "live and die by the labs" sort of doctor (based on my 15 minute first impression). 

 

When I saw the rheumy triage group weeks earlier, I also had all my history written in notes, and the said I gave a good history, I just didn't have it all typed up as it was a last minute cancellation that I got in on.

 

I don't know why I get flustered. I haven't had a negative experience like yours, just lots of the non-helpful variety. I think it maybe comes from having to go and ask for help - putting yourself in someone else's hands... I HATE doing that. I'm not good at asking for help so going to a doctor s putting myself out there in a way I am not comfortable doing. KWIM? I come from stoic German and Ukrainian stock.  LOL 

[GottaSki]

It's that whole "patience" concept that I was hoping not to bother with. LOL

 

 

I often joke that I was being taught patience -- it's not funny at all, but it was either laugh or cry -- now my parents ask how did I become so patient -- I tell them I didn't have a choice. 

 

Keep smiling...makes folks wonder what you have been up to

[GottaSki]

A year ago, I really thought this celiac thing was going to be simpler.

 

 

Us too....I was so happy at diagnosis when we finally had a name for what was going on with me and that all I had to do was remove gluten to become healthy!!!!   

 

Just realized the smilys on this forum are perfect for describing the emotional roller coaster of the celiac that takes longer to heal:

 

:rolleyes:   :o   :blink:

[GottaSki]

here is the last two years...the forum wouldn't let me post enough smiles to represent all four years of healing in one post!

 

:angry: <_< <_< <_<  <_< :mellow: :)

[nvsmom]

Just realized the smilys on this forum are perfect for describing the emotional roller coaster of the celiac that takes longer to heal:

 

:rolleyes:   :o   :blink:

 

That is so true!  LOL  This is what I felt when I read that;

 

Thanks again, Lisa. You've been a great support. It's amazing how much people I have never actually met have been a help to me.

[Renaye]

nvsmom

I have also been to a rhuemmy doctor.  I have a positive ANA but nothing else.  I have mouth & nose sores, dry eyes & mouth, mild joint pain in my hands and feet, crazy GI tract - terrible constipation and terrible fatigue.  Diagnosed initially as "sicca" but put on plaquenil.  Plaquenil has helped me get out of bed and go to work.  I am not normal and I can see a cycle of symptoms.  I have no official celiac or sjogrens diagnoses but on my paper work, my diagnoses are celiac and sjogrens?? Not sure how much the gluten-free diet has helped but I am too scared that I may get something else, so I eat gluten-free.

 

Please don't give up, if you know something is not right, find a doctor that will treat your symptoms.  AI stuff comes in bundles.  You don't just get one, you may get three.

 

Renaye

[nvsmom]

Lol You are so right Renaye, I already have three.

I am glad you have found help with the plaquenil. I hope the gluten-free diet is able to help too.

[Gemini]

nvsmom

I have also been to a rhuemmy doctor.  I have a positive ANA but nothing else.  I have mouth & nose sores, dry eyes & mouth, mild joint pain in my hands and feet, crazy GI tract - terrible constipation and terrible fatigue.  Diagnosed initially as "sicca" but put on plaquenil.  Plaquenil has helped me get out of bed and go to work.  I am not normal and I can see a cycle of symptoms.  I have no official celiac or sjogrens diagnoses but on my paper work, my diagnoses are celiac and sjogrens?? Not sure how much the gluten-free diet has helped but I am too scared that I may get something else, so I eat gluten-free.

 

Please don't give up, if you know something is not right, find a doctor that will treat your symptoms.  AI stuff comes in bundles.  You don't just get one, you may get three.

 

Renaye

Renaye......sounds like you do indeed have Celiac and Sjogren's.  Both AI diseases can be hard to diagnose and do not always show up on blood work.  I have Celiac, Sjogren's, Reynaud's and Hashi's thyroid disease.  I also have high ANA and RF but that can be caused by the any or all of my AI problems.  However, and this is important, I have been gluten-free for 8 years now and I am very strict with my diet.....never, ever cheat.  My numbers are coming down, over time, slowly but noticeably.  The longer I am gluten-free, the better I feel and the lower my numbers are.  I do not see a rheumy because I do not do meds.  I also have no overt symptoms anymore, just elevated bloodwork. 

 

Please stay strictly gluten-free because you will get better.  You may be able to get off the meds too but it does take a long time.  Healing is very possible with the right mindset and good nutrition.  Good luck!

[Renaye]

Gemini,

Thanks for the encouragement. It is really difficult at times especially since I am intolerant to peanuts, eggs and dairy also. Hopefully everything will get better. Sometimes it is hard to stay positive when you read all of the "what if's" that you can get or possibly have but don't know it yet.

Renaye