|So much has happened, yet in so many ways, stayed the same, if I wait long enough before posting.
Today finds me so incredibly sad and shook. I didn't know just how deep the wound is /was, but it came to fore today.
Dr Waite left WA to teach at University in MI, and I knew I lost a special MD and support system with him -- and a MD who had first hand knowledge of Gerry, but I had no clue just how "spoiled" I've been until now.
I made an appt w/Dr Knaack today to meet, and get my "list" of today's things addressed /completed. Among them, I just rec'd a review inquiry by LTD, due march 21st, and the other is to get a clue about the validity of the DNR WSH (that WSH created and uses in their facility) had me fill out v. the typical POLST that is the known standard.
My question to WSH was would it be accepted by all, and they said yes, but my gut says not so much, therefore I wanted to ask Dr K. if it was SOP and will be accepted. We never got to that item. I ended up asking the ladies at check out, and I got another POLST which I will fill out, and request it go with the DNR WSH uses, so it will be used just in case whichever facility she may find herself.
I imagine WSH will allow it, despite the potential blow to their hard work to create their form, and the pride & ego that go with it which is not my intent - I just want Mom's wishes carried out without confusion.
Back to my MD appt today. It started with an unfamiliar nurse, or whatever she is, not letting me bypass the scale humiliation, which historically has never been a problem, and her response was an abrupt "NO". Once in the waiting exam room, her getting stats was not readily shared with me, such as my BP, temp, and pulse etc -- I did get a begrudging answer by Mary Lou re: my BP.
Dr Knaack finally entered, and when I stood to shake his hand and introduce myself, his reaction to that was him being "thrown" by that courtesy -- it should have been clue #2 [clue #1 being my theory of "top /down" in all things re: how any biz, service, et al is run: if the "chief" displays a certain attitude, ethic, way of communication etc, the staff usually reflects same -- in this case, the RN was not even close to kind, didn't give me her name, didn't crack a smile, but was curt, supercilious and not forthcoming with information].
So, Dr K. asked why I was there today, and I had my wee sheet o' things to do in hand. This helps my thought process and is a memory "tickler". It also helps me expedite information about my hugely complicated history etc., BUT, he'd have nothing to do with what was on it, or look at it himself, stating instead, that he wanted to hear it from my mouth.
I can appreciate his wanting to hear me speak about things, it helps to learn what I'm made of, but being of poor memory and word-famished of late, well, I sound like a fool searching for words to express myself which wastes precious time trying to find words and /or further explain what I already said.
He asked things and I've little clue as to chronology and /or circumstance re: my disability and how I got here from there. I told him I have documents at home, and an older paper I wrote about the events up to my initial disability, but he said he wanted me to speak to it. So I tried to comply.
Our time was ending, and very little touched on my list. And still no further than "hello" re: my history. I suggested he could utilize the copy of my last year's form as a base, and /or contact Waite.
He said no, but apparently conceded the wisdom of the written word, but he didn't say that, simply said that I was to get an outline together for when I meet with him again.
He said re: Rx, he had to "trust" me as I was his patient. Implying, if not outright saying, that he didn't truly trust me re: my pain meds after all. He said it a few times, in a few different ways, so I finally asked him if he truly did trust me, because, to me, if he didn't trust me, we probably were NOT a match. He said, again, that he has to trust his patients which is a non-response -- and his voice and body language indicated he didn't trust "me" per se. I told him my Rx needed refilling, and asked if he'd do a refill and he said he would.
I then asked if he'd be able to get to the disability letter in time, and he said he had no clue. He said he had 110 charts he needed to read tonight (too bad he didn't bother to scan my chart before our meeting if he had, he'd have gotten some scope of my care issues etc. -- I guess I'm not that important to him to be chart read-worthy).
I asked him to please guestimate about the timeliness of his getting a reply to LTD by the due date, but he'd not commit, but he said that with MDs having gone from the practice, he is very busy, and he didn't seem to want to make it some level of priority on his list, so I asked for the form back to see what I could do re: getting it done by someone else.
He was so suspicious and abrupt, looking for my "angle". He didn't seem like a FMS believer himself. Not in his heart, he was probably of the "you need a good lay" ilk, but because the CDC endorses it, he has to, no matter how begrudgingly. He was not willing to allow me one more second for a quickie question, and treated me like I was a (dull) child, telling me he had patients waiting, and rhetorically asking, "how would you like to wait for me" -- not waiting for my reply.
Had he let me speak, I would have told him that I would understand that people have different needs, and that I have no issue with it. I would also tell him that I recognize that one day I'd be on the receiving end of the OT with him... and, er, BTW, I had already waited for this appointment which was late to start.
This doc has a rep as being a gentleman and being patient. Personally, I nothing of that rep realized today. I was treated with suspicion, disrespect, borderline nuisance, and surely not worthy of his looking at my chart prior to my appointment, and certainly not as a person of worth. I left his exam room feeling "dirty", "ashamed", "dismissed" and frustrated that I had not been allowed to speak about Mom and nothing was accomplished on my "to do" list. He didn't even look at the burn on my forehead and subsequent rash. Nothing was really accomplished, except he said agreed to do one more month of Rx.
I can't put to words how deep the psychic cut was, to be treated as I was when I first sought a Dx for my FMS, and how it was dismissed as "all in your head" or "you just need a good lay", as a malingerer, and with disrespect and suspicion. For the majority of my Dx, I had to fight my way to be believed and "seen" as a person of merit, and worthy of care and /or respect. It is truly demeaning to have to beg people to believe I'm "sick", when I don't want to be sick, and this earnest begging for their belief is contrary to thinking or believing something positive -- looking towards health and a future of some hope, but instead, immersed in the muck and mire of my history.
Fighting to be perceived as sick and disabled is not a good mind-set. I am so tired of fighting the world to be heard and understood and believed. And, that he basically seemed to dismiss the history I have to date in my chart as a truth, from other MDs, specialists, and most importantly, Dr Waite, his former co-worker -- well, it stings.
So, when I went to leave, and schedule something to help get my form back in time to LTD to keep getting benefits, well, once I spoke, the water-works started, and I felt the pain and hurt, v. the shock and subsequent shame while in the appt. with Knaack.
I was totally shamed and made to feel like a child of little consequence. I had no clue that I had not ever truly repaired or healed those emotional scars from those battles to prove I was really sick, in pain, and more importantly, honest. To be mistrusted when I honor honesty above so many things, is to undo my existence.
I was truly "complacent" re: my current health support system. I worked so hard to be accepted "as is" and find people that truly believe me and care about me. My word counts. My existence counts. And my place as caregiver for my Mother, and the way I take that responsibility to my heart is understood and appreciated. This all was torn down by this doc's words and looks and types of questions and his not willing to allow that the typical M.O. in reviewing a patient may not be the only way to learn things, such as my sheet I brought with, and, insult to injury, he was totally un-prepared about his new patient's visit today and did not look at my chart prior to my appointment.
I wish I could convey the depths of hurt it touched, but it is not coming across. Suffice to say, I have had the wee terra firma I was trying to build upon, taken from beneath my feet, and am not looking forward to the upcoming appt with PA Young on Wed.
I need to find a kernel of strength and build on it prior to my next visit with Mom, and my appt. with PA Young. Tomorrow is another day and I'll work to avoid the same fiasco for Wed.