Addison's Disease Support Group

Well, I see the new endo tomorrow. My plan is to leave work and go and hopefully return to work for a few hours ( I can not affor more lost pay!) Now if he wants to run tests or keep me there longer, or I don;t feel well ( as I usually don;t in the afternoons) I have backup working so that is good.
I THINK I have everything just about ready for the appt. I would have liked to have typed it all up but well, he will have to read my notebook. He may not even want to look at all of this documentation ( basically when I started steroids and how I tapered or bumped up and how I felt over this last year and a half at different doses).
I feel a little nervous that I am putting all my eggs in this doctors basket so to speak. And I am not I guess as i WILL seek another endo if I find tomorrows visit is not a good one. (If one more person tells me it is "not related" UGH!) I really just need AN answer at this point. I need to be validated that I am not crazy ( well, I am a little crazy ha!)and that there is "something" going on and that someone will try to figure it out with me and help to "fix it" or help level me out. That seems to be a good phrase for me as I feel very unstable physically and emotionally.
I know me, I have a feeling I may break down and cry tomorrow...maybe as I walk in and meet the dr; maybe if he says "You are right! These symptoms ARE AI/Addisons related and I can not believe your other doctor did not help you!" I know I know I am projecting now but wouldn't that be nice to hear?
You know, I have just had such bad medical care over the years ( beginning way back trying to get a doctor to diagnose fibromyalgia before they knew what it was and being told I felt badly because I was depressed..hell yes I was depressed! i was in constant pain before age 30!) And then the recent events of the eye tumor virtually being ignored even by an eye doctor! Only when I took in photos ( I used to take my pic a lot mostly of diff hairstyles or colors and thank goodness I was that vain lol because I showed my current dr those pictures and he ordered and MRI ASAP seeing the changes in my eye!)did I get any reaction to my eye bulging out of my head. Then last year I was weak and fatigued ( from the steroids/AI as I now know)and had this horrible pain in my chest cavity and so many trips to the ER and right away they check the heart even though the pain was on the right side, and sent me home, usually crying and one night even went AMA! My mom was there( so I felt guilty having her sit there) and well a lot of mistakes went on and I was just fed up with noone listening! So I just left...
ironically, one visit for that issue I was being seen in the hallway on a gurney by the one ER doctor I am not that fond of (his bedside manner is not very good) and he ordered a CT scan for kidney stones. That scan showed the mass in my chest cavity! So FINALLY someone found SOMETHING! That is a huge relief! ( as odd as that sounds). They thought it was a schwanomma Cyst and told me to see my dr and well then a surgeon got involved and as I have posted I had surgery last Aug and it was a "traumatic neuroma". Luckily, it was not enmeshed within the rib cage the way they thought it might be ( which would have involved removing ribs and putting in a mesh cage and at least 6 weeks recovery! They did have to put in a chest tube so that kept me in the hospital a few days and they also gave me a ONCUPUMP or something? LOVED THAT! It is a small catheter that goes into the surgery site and continually provides numbing medicine!)But I only took 2 weeks off work and only have a few small scars and that is gone now.
I am sorry I am rambling...there is a point here somewhere...
I still have an odd sensation in my chest cavity where that surgery was. we have scanned everything with CT scans and ultra sounds and gallbladder tests and hidascans but nobody seems to know why I have that feeling. It feels like a muscle or tendon is rubbing against the rib cage or something like that. I call it "the alien baby" to make light of it but it is very uncomfortable. I also get that feeling on the other side now..and well, with all the odd symptoms I have been experiencing I don't know what is related to what anymore.
I have been referred to a pain mgmt place to get a nerve block and may do that one day when things calm down. It comes and goes, it is not always an issue.
I do need to keep that GI appt ( was hoping I wouldn't have to) as I am having a lot of stomach and abdominal pain and issues and at age 45 and being adopted and having a bad GI history ( mostly a lot of bleeding issues as a child/teen which they checked out back then with no abnormal results) it wouldn;t hurt to get "scoped" and checked I suppose.
Well, again I apologize for rambling in this post. I think I am just getting apprehensive and nervous about tomorrow and needed to vent some stuff.
So, if you have read this far and have any words of wisdom or advice for tomorrow, feel free to reply!
Thank you FOR EVERYTHING!

Hi Jeep, I am hoping all goes well for you at the appointment. It seems like you have done a good job of preparing yourself. They never go the way we plan them though!
I had my appointment on Monday and lost my notes! UGH.Naturally I forgot to mention some things and became frustrate to find out what he did and didn't get for medical records that were suppose to be being sent to them. My halter monitor results nor my renal ultrasound were sent to him nor the more relevant other records but the ones that were a bunch of crap were! I told the new doctor exactly what I thought of that
.
At least they didn't put it in your medical records that are LITERALLY mentally ill! When I first started going to the doctor to try to get help I was quite young and knew NOTHING. I was sent to a rheumatologist who is a complete morron with a God complex that couldn't figure out what was wrong and so sent me to a psychiatrist and told them he thought I was bipolar. (This is the same idiot that read the full body bone scan said there is inflammation in all my joints THEN read my bloodwork that said my sed rate was normal and I had no RA or lupus and so handed me a pamphlet for fybromyaliga! As soon as I opened it the first thing it said was it is NOT an inflammatory disease and DOES NOT cause inflammation in the joints. I questioned him on it and he got angry and labeled me for life as mentally ill!The endocrinologist that I was sent to because of the reactive hypoglycemia was in the same building and good friends with doctor "God" didn't bother to check anything much further and told me to eat like a diabetic and that was the end of the help I got from him! My family doctor was a LOT more helpful in dealing with my glucose malfunction than the "specialist"
I was put in individual and group therapy with people that ACTUALLY had bipolar disorder. It didn't take long for me to question their logic and the therapist were not far behind thinking the same thing. They told me I didn't belong there I needed a medical doctor. I went back and he just sent me to a new therapist! It wouldn't take long and they would say "You have outgrown the group" or "there is no need for our services at this time". I was labeled bipolar because I would get episodes of severe fatigue,loss of appetite, need extra sleep, become clumsy, muscle weakness,stiffness, terrible joint pain and after a few weeks (if I DID actually give in and rest a lot) I would feel better and then go nuts trying to catch up on all the work that no one else was going to do just because I was sick and couldn't. Pushing myself like a madwoman to catch up would crash me again and the cycle started over.
Then I discovered the medical section at the library and realized how isane HE was and cut off ALL doctors and just tried to cope with everything on my own for many many years.
That ridiculous ordeal was about 18 years ago and all the other more important things were more recent and yet that was what was right at the top of the list sent to the new endo.
When he asked me about it I told him "yeah that is what they tried to tell me but I don't buy it. They decided that because they couldn't figure out what was really wrong. When I say I am physically exhausted, I am physically exhausted NOT depressed. If I say I am depressed, I am depressed! I'm sure he understands that I will not accept ridiculous answers anymore no matter what letters come after your name!
Make sure you do the same. Make your point fist off so he realizes that you will not be blown off with your concerns. That way he will pay more attention and not get on their "one track mind modes" they so often get on.

Jeep,
Good luck, and stand your ground. Don't take any crap from the doctor, and if you don't click with him, don't go back. Its just not worth it. If they have their own agenda and aren't willing to listen to you, you will never get the care you need. I sure hope things go well for you and he listens and tries to help. My thoughts and prayers will be with you.

Vanyel

Thank you Vanyel and Maremma! I am sure i will go in with a positive and hopeful outlook and I will be honest with this doctor. I feel i am running out of options here and yet I know I am not. ( There are other endos and there is my Duke appt).
Maremma, being labelled is never fun and I have been there done that. Also, having actual diagnoses of depression and anxiety doesn't help when doctors are not willing to look at your medical symptoms! I can not tell you how many times I have said " I have been depressed since I was 11! This is NOT depression!" It may CAUSE depression but hey some of the bad treatments I have gotten from doctors could also cause homicidal tendencies! LOL That was sort of a joke!
Now suicidal tendencies, another matter. I felt SO bad this last setback, the thought of ending it really crossed my mind. Not that I could do that ( my mom and dog need me) but the idea was there more than once.
I really wish in a way that I could have seen this dr on one of those bad days..but then I may not have been mentally as clear as I am today ( not that I am clear now!) and i look at these visits like a court case sometimes where I have to go in and plead my case, ya know? With my luck I would get Judge Judy ( who I love)!
So I hope I am clear and not in one of my many fatigued states when i see him ( although that might be good timing to hit one mof my walls while I am there let him see how retarded I get when it hits!) Speaking of that, do you guys get that way throughout the day? I have times I am fine then I hit that wall and I get so tired it is like I am stupid! Lately, I have pictured it in my mind like some new video game where I am wandering through my day and these brick walls just pop up in front of me and BAM I am exhausted for awhile..then they drop down again only to pop up elsewhere later!
Ok well, am gonna end this and will write later as to how today went.
Thank you so much for your support and input. You have no idea how helpful you have been and how you have helped me feel validated!
Best to you!

I saw the new endo today. It did not go as well as i had hoped. I had hoped he would say I was right and that all of my symptoms are in fact AI related. No, he said "they may not be". My heart sank.
Am too tired and a little weak to write much right now. I will write in the morning.
He is running a 24 hr urine cortisol test and he ran some thyroid labs and took me off Cytomel.
He wants me to have a sleep study ( as my GP has wanted me to have one too) so I will, although I am not sure how a sleep disorder would cause me to have the weakness and weight loss ( and myriad of other symptoms).
I am going to continue to see him as my endo. He did say he does want to figure this out ( whatever THIS is) so that was encouraging!
Oh and he feels that my pseudo tumor was related to my thyroid despite the negative Graves tests.
He also feels it is OK to go on the stimulant meds so I may try those again tomorrow.
I feel like I am starting at square one again and it is so frustrating.