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Meredith0903 (@meredith0903)

Would like to hear from people with Sjogrens

Autoimmune Diseases | Last Active: Mar 18, 2013 | Replies (38)

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@powerofpositive

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and …., I’m 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records…which I advocate to others now to obtain on an ongoing basis…it is amazing the errors over and over ’cause they copy off each others notes, 9why sit there talking to them…they obviously were’nt listening) miss quote you, ommit issues brought up etc…..! Sad state of affairs and may the heavens help us all if electronic medical records goes national…with the errors in my chart, like cardiac surgery in my 20’s that never occured it is insanity at best. And I’m not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?

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Replies to "I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and ....,..."

Thank you for replying. I’ve set up an appointment to talk to my Rheumatologist. I am just concerned that I won’t be able to work and financially, this is not an option for our family.

Dear Power:
So true what you have expressed and I could not agree more. I now write everything down and I make the Dr. take it. I want it in my EHR’s and they are coming real soon. So, straighten out these hapless professionals. If I had done what they do in my career I would have been bounced out on my ear.

Yes. I completely agree, it all must be straightened out, but the process is utterly fustrating and so horribly time consuming. I have thought at times to just ignore it. But because I was such a stickler for notes (was a nurse) being accurate and objective so the patient is properly advocated for, I expect no less from others. Not a tall order at all really from where I came from, but obviously it is from many others. And not only would I have been tossed out for such sub-par work, I wouldn’t have been able to consiously do that : slighting my patients.
We need complete-open-communication with all aspects of our medical records. I currently have to deal with a third party in obtaing them and by golly they never send the proper notes, and then to tend to the errors/adendems etc., It is a hefty portion of time wasted/working on something that is so vitally important, yet continues, is fustrating, and is counter productive in stress levels…which isn’t helpful for ill people. Proper documentation is a basic right of medical care! It should not be an exception. We all make mistakes, but this is to much!
I bought a small recorder recently so that I can bring it to visits, announce the visit will be recorded and see if this helps the situation.
We should all be accountable for our actions/work. We pay dearly for healthcare and such a broken state it is in. Since records are going national and there is legisation underway that will enable law enforcement to extract information, (medications/conditions etc.) then it is imperative that they be correct, for many reasons….the first and foremost being our own health advocation.

You are a Maverick in your actions and I commend you. I learned a lot here as well. I am also tired of being ignored and treated like an incorrect medical record. We are lucky to get 15 minutes out of a doctor. Now really, the only way we can fully tell a doctor what is wrong with us is to write it down, have him read it. Sure, he/she will read it. LOL. and then leave the doctors office. All of these autoimmune diseases have very, very, weird symptoms. Some I hated to discuss because in the back of my mind I know they are thinking, (liar, attention seeker, hypochondriac, histrionic, menopausal, neurotic, crazy, woman). Funny though, for twenty eight years in a high powered, male dominated profession no one ever looked at me that way. Not until I became sick, did this industry of health professionals make me despise them. I like your style and passion to our plight. We have to start demanding respect from these so-called professionals. I guess I need to start pulling more of my records. I already have a 50 pound box, literally, no joke. Thank you for the education as there is nothing more powerful than being armed with knowledge.

You go girl! 🙂 I’d never thought of recording a visit. I’m sure some doctors would be horrified. We really need a printout of every thing that is written or recorded electronically as well to be on the safe side.

I think cut and paste has become standard along with incorrect or misspelled medicine names. On a followup visit, I discovered that one of my blood pressure meds was incorrectly listed in my chart. The aid who took my blood pressure and listed my meds was not listening and wrote down what she thought I said. Since she is not a nurse or doctor, she doesn’t know the drugs and had no idea what she had done. I shudder to think what other errors are made on a daily basis.

Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n’t seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don’t know. I have read and I wish I could quote from it but the brain fog takes over —– a lot— that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won’t come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can’t state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee

Yes, I have been shuddering for years,regarding your statement regarding errors. In my opinion, this is utterly a disgrace. I have watched this for decades. I handled the care of my ailing mother for years. I had more screaming matches with Doc’s than I would like to admit. Sometimes the words that spilled out of their mouth’s or their nurses were complete lack of regard for their profession. For those of us who are perfectionists and on this site, and I don’t know why there appears to be a common thread of perfectionism. Can this possibly be a personality trait of this disorder. I do know that certain traits go hand in hand with some illnesses. Need more research on that one! I am not an belligerent personality but I am intolerant with a profession that demands respect but does not give any in return. Where is the fairness here? We deserve so much better. We are supposed to be dedicated to what we do for a living. Have we lost the intelligence that once graced this planet. Or have we just become complacent? Sorry, I am venting again. However, do we deserve this type care and disinterest from professionals. I definitely think not. I do not want to leave this earth as my mother did. Neglected in a nursing home. whenever I had to attend to my career and family. I felt like a prison warden overseeing staff at a nursing home that cared only about how much overtime they could collect. What is wrong with this picture? I can’t be a doctor, lawyer, chief, cook, and bottle washer for the rest of my life. I now have to take care of me and have compassion for mankind. Alright, I am off my soap box. Thanks for listening but what I read here makes me see a commonality that is not what we deserve. I do know now, that I was not alone in this very difficult plight of ours. Take care all. Keep the faith and believe in yourselves. You really are not alone. Hugs to All, Dee

Why would this sjogrens ‘wing’ at a metropolitan hospital include oncology? I understand the other related docs like rheum and opth.

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