Hello everyone, I had a regular appointment with my regular doc, an internest, yesterday just to update her on my condition by sharing new symptoms. I have my first appontment with a great Rhuemy on the 11th of this month and wanted to make sure she was aware of it and to get some advice from her on what to say to Rhuemy. I have been seeing this internist for I think about 7 years and never cried before, but yesterday I just started to cry like a baby in front of her..plus she had a male PA student with her. I just felt overwhelmed and scared and thanked her for believing in all my symptoms all of these years even though she didn't know quite what to do with all of them..since my bloodwork for autoimmune is negative. She comforted me and told me that I may never know an exact name for what is wrong with me and that I will have to accept that for now. I told her about all of you on here that have negative bloodwork and she said that she truly believes that we all are sick and that the medical profession is finally starting to LEARN about this and that it will take some time. I then turned to the PA student and said...remember what you heard today..and learn to believe your future patients. I then asked her if all of these people with negative bloodwork have to wait for treatment until it shows up in their blood?!?! and she said no. She wants to wait until I see the Rhuemy on May 11th and we will all move on from there. She did say that having negative bloodwork is a good thing....because i don't have enough inflammation in my body for it to show up in my blood. I just hope I will not cry at Rhuemy office.....please don't let me cry!!!! People, I have been so sick for so many years like all of you..and i am just tired of it all. I am going to hang in there in hopes this Rhemy will be able to help me. Wish me luck!!
Thanks for letting me vent.....Mary
This reminds me of the time I broke down at a doctor's visit. It was not too long after my father's death which was very overwhelming for me, well that and all the health issues I was having at the time was too much. I had what turned out to be a bad case of plueshy (mispelled) the whole time I cared for my father that my doctor was not able to pick up on, he had sent me to a heart doctor thinking something alone the lines of heart problems because I had just started to gain weight (thought maybe I was retaining body fluids) after a life time of being skin and bones, on top of pains in chest and back and a abnormal EKG, even sent me in an ambulance from his office to ER. Just too much going on at the time. This was the first time one had suggested antidepressants.
My doctor was a man so you can bet he was all nerves seeing me sitting there balling like a baby! Then I would break down sitting in a restauant or any place!
{{{Mary}}} . . . sending you a hug. I'm sure it isn't the first time, or last, that a doctor has had a patient cry during their appointment. Crying is a good thing . . it helps to relieve all the pent up frustration, and releases endorphins. Kinda like when one burps . . ahhhh, feels better! ;D
Hang in there. Good luck with your Rheumy app't. in May.
Bucky
Dont be ashamed,, we all so sick that I;m sure we all want to break down and cry at times,, I know there are times I;ll just wander off to some part of the yard or to my shed and sit there and just let it out,, I dont realy cry,, I just sob some,,
Mary,
It sounds like your doctor was supportive. That makes a big difference.
I cried for the first time in a doctor's office a few weeks ago (seeing my new rheumy).
I had no moisture in my mouth (it was a particularly "dry" day and I could hardly speak).
She asked me "why" I was crying. ??? (I don't think it takes a rocket scientist to figure out why.)
She also told me that anxiety causes dry mouth and I should probably see a therapist.
She is now my "old" or "fired" rheumy.
Livvie2
Aw Mary, there's no shame in tears, okay? Am sending you some giant gentle
( ( ( ( ( H U G S ) ) ) ) )
my friend -
Patze
Mary,
Who wouldn't cry because this thing can be so frustrating and miserable to deal with, and you've been sick for some time. Keep your chin up as best you can, and thank goodness for your understanding doc. That can make so much difference!
Best wishes,
Sheltiemom
P.S. I do cry sometimes, and at least now there are minimal tears again - better than none!
We all need a good cry sometimes to let it all out. I have cried in my own internist's office and SHE was wonderful to me. We can all get through the bad times if we support each other when there is a great. I am a Christian and I pray a lot as I am going from place. Right now I am praying for a good Rhuemy for me. I do not like the one I have. It is a waste of time to go. Good luck to you and Hugs. Redetha
It's Ok Mary. I think we've probably all been there at some point.
My symptoms came on suddenly and I was freaking out b/c it seemed like every day something new was happening to me. I didn't have a Primary Care Phys, tried to get into a new one. I got lost getting to the new dr. office, was 10 minutes late and she refused to see me. I had been waiting 3 weeks for that appointment. I just decided I want answers NOW, was 2 blocks from a hospital so I went the ER right then. After 5.5 hours, a CAT scan, bloodwork, and pregnancy test. The dr. came back and said all the tests he ran (whatever they were, were neg.) the only thing wrong with me was elevated blood sed it was 43 supposed to be <20. The doc was like yeah, there's something wrong with you, but we don't know what. Good luck with that. And sent me packing with a referal to a rheumy. My anxiety and frustration was so high, I cried when he left the room. (In the ER they don't stick around long enough to see you cry.) All that time and money and still no answers. The nurse comes in to release me and just gives me a weird look.
I've had a couple of private-pity-party-poor-me cries since then. Still trying to accept whatever is wrong with me, still trying to get in to see a rheumy, still waiting on some answers. I see people on here so much worse than me like navydad and wordnerd. I feel grateful to have somewhat "mild" symptoms, yet at the same time there's anxiety and fear wondering what tomorrow will bring, or next year, etc.
Mary, dear, best of luck at your next doc appt. but don't be ashamed to cry, there's nothing wrong with letting it out.
If you ever need a good cry, let me know and I'll cry with you. Sending hugs and healing vibes your way.
Hello everyone, thanks for all the replies!!! Thank you also for making me feel better about crying in front of doctor. I could tell she felt bad for me and the PA just put his head down..so I could tell he also felt bad. She told me that she wished she could've done more for me over the years to help. The fact is, some doctors just don't know what to do for us so we must keep on keeping on until we can find something that will help us. Not an easy journey we are on and I usually try to sob in private...like at night on my front porch when nobody else is around. How can we not be sad when our lives have been changed so dramatically by a disease that can be such a mystery to us let alone to the medical professionals. I have a high threshold for pain so when I do complain or cry, you know its a bad time for me. I appreciate all the hugs that you all sent to me...they mean so much to me and make me feel better. Once again my friends on this site have helped me through another tough day...thank you all! Mary
Quote from: sleeeepy on April 30, 2010, 10:38:47 AM
She did say that having negative bloodwork is a good thing....because i don't have enough inflammation in my body for it to show up in my blood. I just hope I will not cry at Rhuemy office.....please don't let me cry!!!! People, I have been so sick for so many years like all of you..and i am just tired of it all. I am going to hang in there in hopes this Rhemy will be able to help me. Wish me luck!!
Thanks for letting me vent.....Mary
My Rheumy told me same!
Having negative blood work means that inflammation is not so aggressive to show in blood.
She was so sympathetic, made me overwhelmed, I was near to tears, but did not cry.
I am ill for nearly year now and I had enough, I just want get of from all medication...
I could cry just listening to the comments by your doctors (both mary's and Beta) that sero-negative means there is not enough inflammation in the body to show in the blood. There are many many people here with tons of inflammation that are sero-negative...I'm one. There is NO salivary glands left...so much inflammation that it's all scar tissue now...listed by the pathologist as "Sjogren's at end stage". Not to mention at the inflammation casuing damage to the CNS, lungs, brain, eyes, esophagus, blood vessels...and this goes on and on. I am completely disabled by this raging disease that keeps taking more from me. After almost 20 surgeries, a pacemaker, medi-port, knee replacement, severe autonomic neuropathy, cardiac problems, GI issues at only 46 years old...I would certainly cry if my rheumy told me that. One of these days they (all rheumy's) will understand more about why some are sero-negative and what it "really" means.
Mary: I certainly hope that your rheumy doesn't make you wait for treatment just because you're sero-negative and maybe he/she will even know that it has nothing to do with the amount of inflammation. He/she will probably do more testing since you are sero-negative...like the schirmmer's test and maybe lip biopsy. At least so he can confirm sjogren's vs one of the other AI diseases.
Good luck, and let us know how your appt goes on the 11th.
Anita
I broke down and cried at the optometrist's office. I was having SO much trouble seeing the chart, and felt pressure because it costs me SO much for lenses in my glasses. She is a very nice, sympathetic doctor, and I just lost it at one point. It didn't help that she found I'm cross-eyed, etc.---another problem I had to make decisions about for the glasses. I think I was emotionally on edge to begin with, and having to deal with macular degeneration, high myopia, cross-eyed, and $money$ ----I was sad, frustrated, angry.
Since then my other eye physician told me I have esophoria--which is temporary cross-eyes and needs no correction.
Calli
When dealing with so many things in life that many times we don't understand....its ok to shed tears. We have the regular day to day life issues like family, friends, home, job, etc etc, then add sjogrens and other "medical stuff" on top of it and who wouldn't break down and cry once in awhile? In my humble opinion it's ok and its "normal" .
Like Patze said....there is no shame in tears.... I agree...and feel that it is healing!
Hang in there all......
Agee with all the others, there is no shame in tears. I have learned though that most doctors are there to give you another prescription. I'm not saying that in an entirely negative way. This is the way they practice medicine these days. When I first came down with Sjogrens and my blood pressure and heart rate were skyrocketing in my GP's office, she wanted to know if everything was okay at home. I assured her over and over again that it was and this was a physical manifestation and not emotional. But, because she didn't know what was wrong with me (Autonomic Dysfunction) she wanted to refer me for counseling. Needless to say, I have a lot of specialists now and don't show my emotions to her anymore.
It is good we can assure each other because we don't always get it from a physician.
Anna
I attended a Sjogren's meeting in California a few weeks ago, and a woman said she cried in her doctor's office because they finally put a label on what has been going on with her. She'd been suffering alone with it for years.
Anita,
Before I read your post, I was feeling happy reading the two posts before yours because I'm negative on those two tests. Thank you for the information regarding your experiences (which I'm sorry you are having to go through).
Although it would be wonderful to think if we are negative on the SSA and SSB's that we will have a milder case, since this is not true, it is better to not have our symptoms discounted. Your post was very helpful and it's empowering for those of us who might get the runaround from doctors because we tested negative on some of the tests.
Livvie2
Hello, I agree with this because when the doc said that I am lucky because there are no inflammation markers in my blood, I thought to myself MY GOD!!...I can barely function now..what in the heck am I going to do when there are markers in my blood :'(. So, I think there is another reason for being sero negative besides level of inflammation....because i am in alot of pain and sero negative. Maybe it could be dependent on what parts of the body is inflamed??? I don't know why we are sero negative and feeling soooo horrible. I think that is half the reason I cried..just felt so hopeless...hoping Rheumy doesn't say well you are seronegative...not sure what is wrong with you.....like I have been hearing for the past 15 years. I have waited for soooo long to see a Rheumy and this one is said to be really good...if he can't help me, I have no other options to go anywhere else because of my horrible insurance and lack of funds to pay cash for anyone else. They need to figure out what seperates those of us that are seronegative with those that are positive because it might help them understand more about the disease itself and hopefully find a cure instead of a symptom masker. Any other thoughts? Thanks...Mary
Hugs, back pats and an angel tissue to wipe your tears. We've all been there. Nothing to be ashamed of.
There's no shame in counseling and sometimes it actually helps when you're having trouble "sorting things out". I'm sero negative with huge complications, on and off mild and severe depression/anxiety and it only took about 6 years to get to a true diagnosis! After looking like a neurotic for about 3 years they actually started looking at SS and finally got to it with a positive lip biopsy. Anyway, I guess my point is, depression is part of this illness and there's no shame in finding the right people to "talk you in off the ledge". Diane
Mary,
One day they will know what SSA & SSB really mean and maybe even have a better test (simple blood test) to diagnose us without a lot of question marks. Until that time, just make sure ALL you symptoms are addressed and that you're comfortable with the docs overseeing your care.
I'm sure everyone of us have cried at some point, whether it's from the unknown, getting the diagnosis, the brush off from the docs, or just the pain itself. I can honestly say that I don't any one of my doctors would think less of me if I were to cry in front of them. That hasn't always been the case, but now I have some good doctors and I turst each of them. Sounds like you were comfortable enough with your internist to let her see just what you feel on the inside as well as outside. They need to know this. I'm sort of proud of you for letting your true feelings show.
Keep us posted,
Anita
Don't feel bad, Mary. Shoot - seems like I get teary everytime I go to a doctor now and have to go through my long list of problems. I'm not really a crier, but they are tears of frustration. Anna, I am with you on trying not to show emotion now. My GP is very nice, but after a particularly bad month of mysterious ailments I cried in her office and she very gently suggested anti-anxiety meds. Mind you, I was there with a giant red swollen ankle. ::) Needless to say, I didn't take the meds. I'm sorry but I think anyone would be stressed if their ankle looked like mine and they never found out why!