I had a appointment with Hem/Onc Oct 12 at 8:30 which is 2 hour drive, so I did not make it and resheduled until Dec for my husband to drive me as I do not think I can drive that far due to my symptoms are too troublesome . During the hurricane we lost power for 2 days and the second day I was so overheated i was having palpitations then my skin on my face turned a dull white and excessive sweating and hot although my skin was cool clammy ,, well I thought I was going to pass out.
I still do not understand why as sick as I am why these doctors would make me travel to Mayo ? I have been there before to be seen by Primary care and then Pain which was a wasted visit as nothing was done to give me a better quality of life or relieve my symptoms as I refuse to sit in another ER only to be scolded at “you are not sick enough to come to ER, your doctor was wrong to tell you to come to ER he was just being lazy and we have done extensive labs which are normal” the labs were normal CPK,CBC .. I guess they call that “extensive” I could go on and on how ignorant I have been treated by MD’s, or treated like “it is all in my head”
I am hesitant to get my hopes up only to have them deflated, I do not know what has happened to the medical professionals field as there seems to be very few doctors wanting to use the knowledge they went to school for and took the hypocratic oath “DO NO HARM” when a patient like myself at 59 years old has to settle for ??
I think at this point with the solditary scalp lesion which caused ulceraton bleeds scabs and painful and not healed in 4 years and it still there ? Why can’t someone cut this out and suture me up as the Dermatologist are perplexed? Biopsied “Necrotizing Folliculitis” then Pre cancer and frozen but still there, sent to Rheum and Rheum negative.
Sent to Moffits by my pain management as there was no more they could do for me and as I stated my health has been on a downhill slide (worsening darker Livedo, pain poorly managed, urine dark amber with occasional pink staining when wiping with a foul odor and low amount, no appetite with weight loss >20 loss, skin changes most noticable on nasal area with peeling enlarged pores, redness and lately my pores bleed?
It is just getting too much too many symptoms that really all I want is Palliative care but I am told I am too young, it would be giving up. well I kinda lost any hope of anyone finding out why and my husband said ” No body has helped you and all I have done is driven you hours away only to be told “Go to this place”
I was even sent to a shrink my my male primary care and was shocked to find out I was there to rule out “Hypocrondia” I was flabbergasted as anyone that looks at me can see I am not well!! The shrink ruled it out but now how can I trust this doctor??
I am sick of hearing my symptoms are complex ,,, well as far as I am concerned it has been the neglect of ,my medical care , inaccurate medical documentation by some doctors who have written my pain as “ALL OVER”: when I never stayed that as it has always been to the Right upper Extremity area, then I saw someone put ‘Heart Disease” how can I have heart disease when I never knew I had it and not on any high blood pressure meds . The only heart related was a PVC on EEG when I had that Epiglottis tumor that was probably pushing on something but when repeated after removal it was gone.
I am unable to correct my medical records and I wonder what else is incorrect .
I do not think it is too much to ask for a better quality life have my symptoms treated (the excessive sweating causing feeling pf passing out, my pain which causes palpitations and majority of my time spent in bed and not wanting anyone to bother me which makes it hard on ,my family as I do not get up to visit or do things with them due to I am so miserable and just want to be ;left alone and live apart and by myself as I can not get my pain managed in Maine for those few months so I stay alone here in FL