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I think they are about to deny me again... they are sending me to a psychologist...? (Read 10115 times)
kenna
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I think they are about to deny me again... they are sending me to a psychologist...?
05/12/11 at 09:40:35
 
Hey guys,

I'm in the SSI disability applications process... again and I could use some assistance from you all. Please, guys? Undecided

I was diagnosed with UP when I was 18 (recently updated to TMEP). I spent the next few years at UCLA trying experimental treatments, which was no fun; Embarrassed lots of damage, bone loss, etc. So by the time I lost my medical coverage & my job, I had already given up on doctors anyway. I learned to keep myself as comfortable as possible, Tongue but that was a far cry from functional.

Now I'm trying to get SSI/Disability but I don't have any recent medical history (ten+ years) to support my case, except for emergency room visits. So they had me see this doctor, but the five-minute exam was a joke. Now they're sending me to a psychologist, but I'm not sure why. I'm afraid it's just to cover all their bases before they turn me down. If anyone has any suggestions as to what I should do, or wants to share their experiences with this process, it would be greatly appreciated. Thanks.
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kennadevere  
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #1 - 05/12/11 at 16:48:43
 
I got my SSI then SSD and I didnt go through a psychological exam. I did go through a govt DR exam though. This is only a suggestion but this is what I would do. I think they will look for 2 things; rational thinking and honesty. For this exam remember that depression isnt a bad spot to show IF its the truth. Anyone who has gone through what you have, would be depressed--about their physical condition--but show some positive attitude in family or friend relationships. Thats rational.  Be honest but be sharp thinking. If you get confused, blame it on the masto brain fog.. they need to see it as a symptom of your condition.

After this exam.. you have to remember the most important thing when going for your SSI or SSD, its PAPERWORK. They think that with no paperwork you are not suffering or you would be going to the DR often to seek testing and a solution, So this is what you do (my suggestion)
1 make lists of EVERYTHING
 a) symptoms-what you do to make it better, rate it 1 to 10, which Dr has treated you for this, which test was done;.
 b)list DRs and Hospitals you have been treated at--dates, what for, what did they do
  c)list ALL your diagnosises no matter how small
 d) list how this has affected your work life/ability
 e)list how this has affected your daily life, what you can and cant do now, what changes you make to be more independant
 f)list all medications you take even if its when needed or for reactions/shock
 g)list all things you have reacted to including foods, medicines, environment (chemicals, pesticides/spray solutions, etc)

Get and keep copies of ALL your records
Make an ER notebook and put your lists in there--when you go into the ER they will ask if they can make copies of it--you say YES, it makes it part of your official records see?? When SS asks them for your records, they automatically get those too. it helps tremendously

SS is impressed by records and paperwork so make A LOT of it and make sure they get it.

Start going to a primary DR right away, even if you have to search for a good one...not going looks negative see?? I understand why you havent gone to one...they wont.

Good luck Hon
hugs
Ramona
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #2 - 05/12/11 at 16:52:34
 
PS remember 2 things, you ALREADY have a diagnosis of Masto with the UP diagnosis, that much you dont need to prove, You need to prove its gone active, ok?? Which body systems are involved etc.

You have to explain that 10 year lack of...to depression which you are pulling out of and lack of DRs who understand and treat this disease.

ok thats all Smiley
hugs
'me
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kenna
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #3 - 05/13/11 at 22:12:20
 
Hey Ramona,
    Thank you I did every single thing that you suggested in your first reply. I swear.  Kiss Kiss Kiss Kiss 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 Undecided 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.  CryI 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...  Lips Sealed
Then pill #1 into the blood stream  Roll Eyessaid to my head "see life isn't too bad. Pill #2 to hit my head  Winksaid "actually I think we feel pretty damn good...". Then pill #3 said  Cheesy"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."  ShockedI 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  Shocked &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! Sad 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  Angry!!!... etc. Embarrassed
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 Undecided and I started to worry that she would notice that I was just repeating everything that she had just said...
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kenna
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #4 - 05/13/11 at 22:15:45
 
In case I did not make it clear... Yes. You are right, Ramona and I will do as you suggested at the psych exam and emphasize depression as the reason for not getting to the doctor for 10 years. I love you for helping to drag that out of me. Verifying it for me. You rock! Really.
Love,
Kenna
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #5 - 05/14/11 at 13:44:10
 
Kenna,

I think it is really hard for those who are young who have this illness. If you don't have enough time to have lived normally, how can you compare your sick times to what most people would see as normal? How can you know that what you are experiencing is wrong, and that you need and deserve help?

Good for you for holding on, and making use of the help that has come your way! Doctors are not god, and how clever of you to figure out how to get what you need from yours, in spite of everything working against you.

Keep applying that to your SSI application, and hopefully you will make it through.

YES, it is fine to say you have been too depressed to take care of yourself. For some people, that level of depression would be enough to get disability, by itself. Use whatever you can to get your needs met. Who cares, ultimately, if your disability award comes though for depression, or for masto? What is important is that you get it, so you can move on with your life.

So glad you have someone to help you go though all of this. My experience with disability was that they made me feel even worse, trying to prove to them how badly I felt. I had to keep reminding myself that once the process was done, I could move on without worrying about whether I was "sick enough" for them. You can even get better, once you get the support started. Remember what they say: The best revenge is living well.

May you live well.
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Susan

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Diagnosed with Mastocytosis August 2011
 
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #6 - 05/17/11 at 14:03:55
 
Hi Kenna, sweety Smiley
First I want to say Im sorry for taking so long to answer you...honestly.

Youve done so much for yourself in that long dark time. I dont think a lesser person would have survived that--and you know what? That smart a$$ attitude that I first saw when you came on the board--Im sooo thankful for it now. I shudder to think what could have happened to you without it. You survived that--Hon you can survive anything. I dont know where your Mom is and it isnt my business.. but I look at you now and just want to wrap my arms around you and tell you no one will hurt you again, or I will hurt THEM lol.

Im thankful to your boyfriend, very much so. He's earned his wings, seeing inside of you and caring for that scared girl. Im also proud of you and the way you stood your ground but knew when to "play the game". I want your SSI to go through for you quickly and Im gonna keep you in my prayers for it! Let me know after that psych exam ok?? Whatever you do, keep your head up. You are one marvelous person and I am so glad youre here Smiley Anytime you need to talk, just let me know. Im terrible typing but I can call anytime!
Love you BUNCHES
Ramona
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kenna
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #7 - 05/17/11 at 14:04:00
 
Hi all,
 I just got home from my SSI/SSD psych eval. I have no idea how it went. I did not handle it well. I just knew all she wanted was for me to answer the roughly 25 questions as succinctly and quickly as possible to be done with it, so that made my adrenalin start up even before the exam. I sat there...  Grinhuh.... I said sat "there". No, I squirmed, cried and flailed my arms around "there" trying to get as much "supplemental" info into her before the last question ended our exam. I realize that me freaking out was hardly the miserable, catatonic, pathetic mess that I have been describing to SSI all this time. And as far as determining my mental functioning capabilities via the test, my cat would have been able to appropriately answer at least a third of them.
Here are a few I can remember:
Who is the President of the US right now?
& who was
before him?
In what
state were or town were you born?
What do these
2 things have in common? a dog, and a lion.
( I was calming down a bit at this point but was getting ticked about the questions so I responded that what similarities that a dog and lion have are  Roll Eyes "that neither of the 2  four legged mammals ever smoked cigarettes..." She finally smiled... or grimaced. Embarrassed. I really should have just  Lips Sealed,
but then she is asking me if I can prepare food for myself...  AngryI said "it's your house , YOU make it!" I'm kidding Wink about that part.
My actual response was "sometimes I can sometimes I can't and sometimes Cry I am so defeated that I don't even realize that I am hungry till someone asks me if I am and I'll say that I know that I should be hungry because my stomach is feeling the "empty pit" Embarrassed but I have no appetite for anything in particular nor do I care if I ate something that i normally don't like. I simply don't care whether I eat or not because I am a waste of food...  Undecidedair & effort for those around me because I am such a useless (expletive) and that all  I am accomplishing by being alive is burning up all of my mom's retirement $ that she worked hard for and that should go to my daughters when she dies if I haven't wasted it all on keeping my useless lazy butt alive..."
To which she said "okay" Smiley and scratched a marking down of some sort. Undecided. And then, just as I was looking at the table opposite of me and behind her to the right and directly at the out-of-place, wrongly-sized clock for that particular space, she says "Now, without looking at a clock, what time do you guess that it is? Huh Cheesy Cheesy Cheesy Cheesy. I'm not kidding. Now I am great at guessing the time and peoples age and ancestry. And I know how to tell time... So I was like "OMG. I was looking right at your clock there when you asked that. I'm sorry."
So, she goes well then what time is it? I actually tried to disregard what I read on the clock but confessed that I could not honestly give an educated guess at that point because I already saw the clock."
She said "then what time is it?" I said "5:30"

On the clock it read 3:30. Shocked And no I was not trying to be wrong Grin... It's official. Disabled or not I'm on the short bus from here on out. Voluntarily.Lol!
Sorry for the rant. Tongue I feel much better to have once again offered some of my confusion to you all to enjoy. Wink  
But like I said I really don't know how it went, but I will let y'all know.
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #8 - 05/17/11 at 14:51:43
 
I'm so sorry you had to go through that insulting and ridiculous exam, but....  I hadn't laughed out loud all day until I saw your answer about the dog and the lion.    Grin Grin Grin Grin Grin
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #9 - 05/18/11 at 07:12:38
 
Well, you made it through! Good for you.

It sounds much like the session I had. I think they must be standardized, so the doc doesn't have to think at all. They are looking for people who are seriously out of touch with reality (who is the president, where were you born?). Someone with serious mental illness, or dementia, may not be capable of answering those.

You DID give some good answers that will be supportive of depression. It just depends on how alert the doctor is, and whether they understand what is going on.

Your answer on the time is exactly the kind of thing a good psych doc will catch. Where you give obviously wrong answers, but don't even realize how far off they are. This can be a sign of organic brain damage. If the doc takes a bad attitude, they may just say you were being resistant, but hopefully with the other info, they will see that at the very least you are dealing with a serious depression.

Good work!
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Susan

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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #10 - 08/02/12 at 07:19:07
 
Kenna, are you here??? Thinking a lot about you and missing you. I wanted to know if they OK'ed your SSI? How are you Hon???
Many Hugs
Ramona
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #11 - 09/05/12 at 09:52:17
 
Kenna,
I don't know what state you are in, but I live in Indiana and had the same stupid test.  I was crying through part of mine, because I was a total mess and they still denied me on everything.  I was denied twice and was told it could take up to a year to have a court date.  So I wait.......
Pam
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Re: I think they are about to deny me again... they are sending me to a psychologist...?
Reply #12 - 05/31/15 at 20:17:20
 
no. i was denied.
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