A little venting

[Kathy57]

Hello friends!
I try to keep up with reading the posts because I would hate to miss out on anything.  So much useful information and advice.

I'm feeling better than usual and I've been feeling this way since June?  That being said, I still suffer from terrible sinus, oral, skin, nasal, etc. dryness and an unrelenting underlying fatigue.  I know I'm preaching to the choir because I'm pretty sure everybody here understands.

I feel so blessed not to be in a flare and I can work and I've gone through so much stress with my husband's diagnosis and treatment with a very aggressive and fast growing prostate cancer.  I took care of him after his surgery, will be with him through chemo and radiation and have been traveling to MD Anderson with him to support him and be his advocate.  (We are from Illinois and MD Anderson is in Texas so this involves planning and traveling.)

I'm so grateful that I am able to do this and wonder when and if the other shoe will drop.  Fingers crossed.  Having said this, even when I feel "well" I never feel well.  You know what I mean. 

Here's my rant.  I have a relatively new doctor who has been very kind and good to me but a part of me wonders if she just thinks I'm a hypochondriac or complainer.  I had an appointment with her two days ago in which I typed out my routine for trying to stay healthy and well.  This included all my meds, supplements, prescription toothpaste, nasal irrigations and all over the counter eye drops, etc. 

I also wrote brief explanations regarding how important my Evoxac is and what I feel like if I miss a dose, and gave a brief explanation of why I am doing all of these things.

I was surprised to see that I had an entire typewritten page and single spaced!  I handed it to her and said that I wanted her to have this as I know I "look well", but that I do not ever really feel "well".  I wanted her to know what I do and have to do just to function.

She looked at it and said - wow that's a lot  and I don't know if I'll get through it. She then listened to me and gave me a hug.  She asked me what she could do. We decided in doing some lab work and she is going to check on my thyroid levels, bone scan and routine stuff. 

After I left I just wanted to "kick" myself because what I should have done was just calmly looked her straight in the eye and simply said, "You can start by believing me."  Would that have been rude?  I really don't think that my docs understand what my life is like - even during the "good" times. 

She did listen to me patiently but I wonder if she thinks I'm just anxious?  I've been told that before.  They do normal lab work on me and it is usually pretty good. You're  not going to really see my illness in routine lab.

Sigh😞.

What are your thoughts?  If I said that do you think I would have been rude? 

Love you guys!

Kathy

[MAT51]

Hi. From everything you've said it sound to me as if she is just trying to be supportive and compassionate with a patient who is going through a very hard time. However I do understand that sometimes the compassion of others can feel condescending or miss the point. Sometimes it's easier having cool, dispassionate doctors who just tell it to you as they see it.

I think you've probably got so much on your plate that you are allowimg paranoia to creep in over your own healthcare provider? I'm quite sure she doesn't think you're a hypochondriac but stress inevitably impacts on autoimmune diseases so perhaps she was just trying to keep you calm? Maybe she saw the list and genuinely thought that time constraints would mean she couldn't serve you as well as she wanted to in one appointment?

[warmwaters]

I'm always better at thinking of something to say later!

However, I think her hugging you was an indication that she's listening. Maybe she doesn't get it all, but she's in the right frame of mind.

When I do up my list of stuff for the doctor, I always list the top 2-3 questions or concerns I have and that I hope to discuss during the visit. Might not get to all of them, but it helps me focus on what it is I need the most.

[Kathy57]

Thanks for your input.  Actually, I'm glad that I didn't say it.  I think it may have come off rude.  I've just been burned by a lot of doctors but we all have our Doctor stories.  I need to give her a chance.

Now my Rheumatoligist is just so awesome.  I feel like he knows more than I do about how I'm feeling.  I feel so lucky to have him, especially after reading what some people have been through trying to find a good Rheumatoligist.

Thanks for the advice, and have a good day!

Kathy

[Tharrell]

Hi Kathy! The last time I listed everything I felt was going on I had it organized from head to toe. I was just beginning to get sick and everything was haywire and I worried about everything and I wanted to know what was wrong with me since all my labs are always essentially fine. I took it to my phsycometric testing. I was labeled a hypochondriac and told I overly worry to much about my health! I was shocked! I was going to throw in the towel and just survive. With the urgins of family and the board I changed clinic and doctors. It took two more years to get a firm diagnosis, but by then I did have a lot of health problems that needed to be treated with medicine and surgeries! I became much more reserved with my doctors and only told them what I thought was absolutely nesseccary.
The point is this. Monday I see my rheumatologist who had finally diagnosed me. I have been fighting to get better treatment beyond dryness and raynauds, that's all she looks at. I'm done with my joints killing me, with my severe gastro problems which she tells me can be part of MCTD, but does not think so in my case. I'm going to print out a body outline. On it I will mark every system that has a problem and doctors are trying to treat seperately by each department. I want her to actually SEE and then dare tell me my body is falling apart and failing me and it having nothing to do with each other.
I hope to GOD I will not be labeled again, I don't know what I would do!
Your list was actually helpful I think. You listed everything you were doing yourself to help matters!

[Kathy57]

Tharrell,

Good luck with your doctor appointment on Monday.  I hope it works out well for you and hope that your doctor can come up with a plan that will really benefit you.  Do NOT give up!

My current medical doctor  is in the same clinic with my asthma/ immunoligy Doctor.  He totally wrote me off and misdiagnosed me.  My concern is that I am a shared patient between them and they share records. 

After I was finally diagnosed by my Rheumatoligist, he hugged me and apologized for letting me down.  However, at another office visit, he questioned my Rheumatologist's judgement since he took his undergrad training in Europe.  (residency in Boston).  He insinuated that "they do things differently in Europe."  I felt he was putting down my Rheumatologist, who by the way, is much loved by ALL of his patients. 

I was really hurt by this.  I thought he was just trying to save face for the fact that he really basically told me there was nothing wrong with me except for my asthma.  This after multiple office visits and complaints by me.  I think he felt really frustrated by me and wanted to PROVE to me that everything was in my head.😞😡

My Rheumatologist picked up on what was wrong with me right away.  He never questioned my sanity AND he helped me!  So I worry and can only "imagine" what is in my records. 

I am NOT going to give up.  I need doctors who are on my side, as they should be.

Let us know how your appointment goes.  Good luck👌.

Kathy

[irish]

I don't think anyone can truly understand unless they are experiencing this themselves. However, I think it was smart the way you journaled this so she can read it. She will have read it and probably it was very educational for her.

Now she will truly understand how much work it is to be sick and that because we look well doesn't mean we are. I think her hug was worth a 1000 words and that she does get it to the best of her ability. I bet she will be so much more understanding after your letter.

I would give her space cause she does sound like she gets it and is trying. Sometimes, as others said, we can get a little hard core cause we get so sick of being misunderstood. Good luck. irish

The doc does get it I think. Had to redo this as typed the wrong word.

[alwaysimproving]

I would guess she is a relatively young physician? Large thirties early forties?

[Deb 27]

Kathy, I think it's good that you did things exactly as you did. I think the Dr. was trying to be supportive. Give her a few more chances. At least she asked how she could help. Some don 't even listen or care. She acknowledged that you had a lot going on and did not try to blow you off.

I think we have been to so many doctors, deal with so much, get so frustrated, that it can be really difficult at times. I know once when I had colitis and a doctor said we didn't want to over treat a benign condition, I flew through the roof. Called his nurse and really threw a bitch fit. LOL.... It did not feel benign to me but I am sure compared to what he sees, it was benign but it was ruining my quality of life. I now understand what he meant but at the time, it's not what I needed to hear. He was a very good doc. I've been pretty lucky with rheumatologist. Not one has blown me off. The whole colitis thing is another story.

Let's face it, they can't cure this, they can only support us and try to keep our disease from making us too miserable. 

[SjoGirl]

In deference to docs, they get overwhelmed too. I read a good article written by a doc about a year ago in which he/she (can't recall which) explained how harried they are, how little time they are given per patient, and asking that we try to be understanding.

I've also read that coming in with two two or three concerns can be helpful, being sure to list number one as the the number one concern (some people make the top thing number three).

If a doc hugs me I feel pretty sure they hear me. I also have taken the above approach and have found it beneficial. FYI I too have a long list of items and let a doc know that so their realize that there is a bigger picture.  That said even when I took my long list to Hopkins I overwhelmed the doc and he did about the same as yours, ordering blood work, etc.

Hang in there it's so frustrating to have so many symptoms, feel they are all related and feel like no one is listening. Wishing you strength in coming days and continued "good" health such as it is.

[Kathy57]

Thanks everyone for your insights and advice!  It's nice to hear how others have handled similar situations.  There is much to be gained by learning from other's experiences.

To answer your question, Alwaysimproving, my doctor is in her early 30's and with a good attitude.  I believe she cares and that is the starting point for a good doctor.  She also seems very bright with good common sense.  She does not have much experience, but I think she has the potential to be really good.

I think I'll keep her!😉

Kathy