Thanks, Barbara. This would’ve been posted before your ‘checklist post’ which I happen to like very much but I got tired and saved it without posting. Anyway:
It has been said and confirmed. I hear so many possibilities and ‘grasp’ frantically at many – with no ‘reserves’ to ‘run’ on. Maybe you know how that works out.
Anyway, Dr. Diana said MRI also and, regardless of read report, it should be looked at by someone knowledgeable regarding EDS, CCVSI, etc. I’ve printed and shown the info to my physical therapist and explained that if I have to do anymore horrible tests, I’d like them to ‘count’.
I may just have to ‘suck it up’ and see what my PCP says. Truth be known, while not everything I have to say is positive, she has been very accomodating with regards to referrals and she has ordered a lot of diagnostics. She has been the best doctor that I have ever had (in my current medical provider situation) for referring. She has been very willing to order diagnostics – just that they are traumatic for me and reveal little to no info and have seldom been reviewed with me. Like I’m being tortured w/needles and dye for nothing because they are diagnostics that are often without a knowledgeable basis or purpose. Example: horrific pressure in my jaw and head – horrendous – I’ve had 2 diff doctors order CT of head with and without contrast. There’s nothing there (or so I’m told). Worst of all, the CT scanner/equipment is archaic and not worth injecting dye into my body for IMO. It is so old that I understand the image quality is something like ‘6 slice’ versus ’60 slice’ <--yes, I'm a lay person but it was like at 10% for available quality of images. I think Diana said that a CT wouldn't provide the information that she might look at. My veins blow too. I haven't participated in the last head CT with contrast that was ordered for me. The pressure is down by now anyway - yes, I still have pressure but not consistent and alarming right now as it had been. If I have to allow injections of dye into myself (makes it hurt badly for me to pee for awhile so I suspect it's not good for me) then I want it to have some value to my health. I should do the MRI and do it right. The kicker of having the MRI done, more @^%%&$^$*(&@ dye, I think it's a contrast MRI or at least would need to be with contrast to be comprehensive. I am terrified by a phobia of this type of stuff. I mean terrified to the point of passing out, vomiting, turning purple, sweating through clothes, crying and regressing back to being practically a 3 yo who is terrified. Stupid, I know. Embarrassing, for sure. I oughta suck it up since those reactions now sound like 'a day in the life' anyway. I would say 'LOL' but not really funny. I feel like I'm leading myself to the slaughter, as phobic as I am. I do thank you for saying this - I thank you very much. I fully trusted Dr. Diana's previous recommendation and took it to the doctor when she said it. PT didn't 'jump' on it (physical therapist so isn't really her realm) and I didn't push it either. Your saying it again has told me that I'll have to push to have this done. I'll use some of your reasons as well as Dr. Diana's as I prepare a confident and educated presentation for my PCP (maybe PT can relay). I'd love to be paid for my efforts, seriously! It's an exorbitant amount of non-existent 'reserves' that it takes for me to orchestrate all of this. If I had the ability to juggle/handle/deal with/orchestrate/prepare/educate myself, I would certainly put it to proper use via a well paying job!!!! I just miss my job, insurance and my own doctor who knows my character and would help me. Worst part is that, even after all of this, I won't be 'fixed'! Like working hard for a nice vacation or a nice home - now I'm working like a marathon runner and not earning, climbing a ladder or bettering myself (yes, I know health maintenance is paramount). Just that now my best possible benefit is to use my bloody stumps to grasp and cling to a steep cliff before I actually crash onto the bottom. Degenerative, that means that I'll be hanging near the bottom with painful stumps. I just thought of that description. I think my frustration comes from quality of life issues. I really was very proud of my life and felt good about myself as a human being. I also made good choices in life, almost all the time. I respected and cared for others. Strong work ethic, I always honored my obligations and I took care of myself and my family. It's hard to 'operate' like this, be exhausted as a marathon runner, suffer everyday - AND LIVE IN POVERTY! Logically, if one is working THIS HARD and feeling THIS WORN OUT - they should be EARNING and there should be some positive results, SOME REWARD!!! Even if the reward is just self-esteem and being proud for accomplishments. Though in my experience there is also financial reward and being able to effortlessly maintain the basic requirements of life. I am accustomed to trials and tribulations of 'head of household' but have no experience being poor and sick. It's dreadful! A job was a huge part of my identity and self-esteem. I have an entrepreneur type of personality and this loss of function/ability to enact my own will/independence is devastating to my core. I'm don't want it and/or I don't want to accept it. I can't escape it either. I try like crazy to figure out how to maintain it. Trapped. Hence the genetic doctor's recommendation of counseling. Yep, this 'vicious cycle' uses energy that I don't have. Guess I'm going down 'kicking and screaming' (<--hypothetically, of course) and only on the days that I can stomach (<---now that has the capacity of being more literal). It's crazy! Oh, let's not forget to factor in the random physical ailments into this cycle. I seldom have the function/capacity to complete small tasks. This health mess is much more than a simple task.