Hey Ramona,
Thank you I did every single thing that you suggested in your first reply. I swear.
ThanQ particularly for the second entry you posted about the depression. I didn't quite see it that clearly since a portion of it was due to my physical limitations... actually, let me clarify... my
functional limitations.
When I was diagnosed the only info on UP I was given was an old 2 page medical article that
1. I could not understand because I was barely 18.
2. There was little known about it a the time and the info it contained is inaccurate.
3. was written by doctors for doctors.
4.) was about the pre-pubescent form, Not adult onset.
So, I turned my care over to doctors who were mostly derm Dr.s and 1 elderly hematologist. Lots of trials. No progress. All my $ gone and my job as well.
I had no idea that most of the things that were wrong were/are attributable to the UP/TMEP. Until recently
I really thought that everyone felt like crap all time and that I was just being a princess. The more I tried and pushed myself the harder I would fall. So with almost no family for support, this princess has spent more than 1 night sleeping in an alley in the city... Who wants to help someone who just wants to sit there... and need things... and then who goes into your bathroom for a half hour each time and blows it up...
There are new things, symptoms rather, of UP/TMEP that I realize that I have and have had for years and did not even consciously recognize as an ailment. For instance, the burning feet at night... I thought it was another princess quirk that I "had to have freshly washed feet with lotion slathered on then or would not be able to sleep..."... because they burned. They were stimulated. It wasn't until I read here on this forum someone had mentioned the burning of his feet that that was yet another thing to chalk up to my mast cells. I cried when I read that.
I cry every time someone talks about what they deal with everyday. The masto stuff that I deal with everyday... The stuff that makes us look like chronically whining hypochondriacs and makes us FEEL like we are crazy and that we might be imagining the elusive symptoms.
So yeah. I thought I was a defect. A loser. And I wanted to just fall asleep and die. For like ten years. 2 years ago I swallowed about 70 or 80 Carisoprodols. Muscle relaxers. To end it all...
Then pill #1 into the blood stream
said to my head "see life isn't too bad. Pill #2 to hit my head
said "actually I think we feel pretty damn good...". Then pill #3 said
"well you better enjoy it now because in about 35 seconds you are going to send 78 of us back out and then you are going to die."
I called for help and that's how I met my boyfriend. We are together to this day. Best thing ever. He does masto research with me on a computer he built for me to do it on. He's only 25 and finds things out for me all the time that I NEVER would have discovered. He has also put things into context for me and made me realize I am not a defect. I am not a curse to those around me... I am sick. And that I deserve help.
So as it turns out, there has been quite a lot of things learned about the pesky "mast cell" but still it's nothing compared to what is known about other blood cells.
And there are specialist on mast cell disorders. Yes. Like 5 amazing doctors who have dragged us out of the dark ages into brighter light where I think they are on the precipice of medical advancement via the mast cell whereby it will emerge as the root factor at the confluence of numerous disorders such as autism, etc.
Oops... tangent. sorry.
Anyway, as long as you have antihistamines, etc. you
can survive with masto/TMEP without a doctors care... If you have help getting your basic needs met and if you can keep from dying whenever you shock. But it wont be a pretty existence and you wont be unfamiliar with discomfort and pain and shame and embarrassment. And you wont be functional and definitely not "classically"successful.
I have been lucky to have this forum since I cannot afford to see a specialist. I tried to see Dr. Srdan Verstovsek, M.D., Ph.D. but without cash or medical coverage, I couldn't get past the receptionist. I almost gave up there, but them my boyfriend found me a $15 clinic where you get to see a 130 year old Dr. who can't hear a damn thing and refuses to give any info or sign anything on your behalf to SSI disability. When I asked him about prescribing ketotifen and then the other one that's supposed to be better(starts with a "p") ... he looked down, then up at me only with his eyes over the top of his glasses and said "were only going to do one at a time so which one do you want?" I made the mistake of saying ketotifen so he went out to look up this new fangled medicine again (again since I had called prior to my visit requesting ketotifen with the "compounding pharm in Seattle" explanation). He came back in the room and said "it doesn't exist". I told him that some of us are getting it from the VATICAN
&I tried to show him the info I had printed up from this forum, etc. about it and he says "I get my info from MEDSCAPE!
Not some forum with a bunch of hypochondriacs, half of 'em are probably not even diagnosed by someone like me. A doctor with a phd. who went to school for it!" And stomped out of the room. At which point I quietly and politely apologized for upsetting him and asked if I could just go ahead and get a script for loratadine and I'd go ahead and leave".
Good news, I got the loratadine. And all it cost me was 2 visits at $15 plus total time at the office of at least 3 hours each time because it was done at a baptist church and so the Dr.'s visit was 2hrs 45min of accepting the lord into my heart until I promised to come and be baptized then 15 min of repeating everything I said twice... and twice as loud the second time to a dr. ... I mean "A DOCTOR WITH A PHD FROM A SCHOOl
!!!... etc.
P.s. Don't get me wrong about the "accepting the lord into my heart" part. It was fine for the first hour of confirming that I had just done that right then. I just ran out of ways of stating how wonderful it felt after while
and I started to worry that she would notice that I was just repeating everything that she had just said...