Porphyria Support Group

hey everyone!
sorry i have been a not so great pen pal lately. you know how it is...

THIS IS REGARDING APPLYING FOR DISABILITY AND HAVING TO GET A MEDICAL EXAM, etc. i applied with fibromyalgia, endometriosis and hypertonic pelvic floor dysfuction. i also have lyme disease and babesia and they are my main issue, but i am scared to add them as i have heard that i have a better chance without them...?. please disregard this message if you are not interested....it won't hurt my feelings! i need advice and help with going to see the doc that the hire to help them deny my case... please HELP if you can!


anyway, i am writing you all to ask if anyone has first hand experience or any advice that they could PLEASE give me. i am kinda freaking out, in a quiet way... i am disabled, have been for about 2 years straight now(have been pretty sick in the past on and off too, but always got back to work eventually...). finally filed for disability about 7 months ago after realizing that i paid into an insurance policy for myself and that i was entitled to these monies that i now needed since i am disabled. i may only be 25, but since i was 14, i worked at least 2 jobs most of the time and paid my taxes! in other words, i deserved it and needed to realize that.

of course, i hope and plan to get better and work again. i really love working actually. not working for me is kinda tortuous. disability does not like the idea that you are sick now and MAY one day get better. they want you to stay sick for at least 1 year or die in the end. so i guess that is the first thing i am curious about.

how do i express that of course i want to get better and improve, but do it without screwing over my right to file because i am disabled? how the heck will i know if in 1 year if i will be well enough to work? when i have been sick in the past it has been for anywhere from 6 months to 3 years at a time... i should have filed for disablility way before i did already because i just kept thinking i would be back at work soon, but then i realized i needed to get REAL!

i got a letter the other day for a medical exam coming up with someone for my disablility determination as they needed "additional info". i assumed i would get one of these sometime soon...by the way, the doctor they chose makes his money from examining employees of large companies like vlasic and amtrak and protects the bottom line of the companies by deciding in his ultimate wisdom who is and isn't really disabled. he also does disability exams for social security. this is all he does is these types of exams. i do realize that there are people out there trying to take advantage of the disablity system and he probably gets them too which is good, just sucks that we all are punished...

i knew that they were going to give me a doc who will probably try to make things more difficult for me since he is being paid by the other guys, but i didn't expect the guy to be an officianado of disability exams! wow-e!

the paper says i am going for a "bone and back exam" which i find a bit confusing as i applied for disability listing endometriosis, fibromyalgia, and hypertonic pelvic floor dysfunction. i put the stuff that is easier to show and can be proven on paper. i was instucted by the people at SSD to not include CFS as apparently they consider that a mental condition and that would automatically mean a longer wait for a decision(SS is way behing on medicine as they do not realize CFS was defined as a real physical disease a couple of years ago...).

since i applied, i have had a few seizures which have screwed my brain up a little more and i also have been diagnosed with babesia and lyme. i think that most of the illness i have had all stems from these "tick" diseases that i suspect i have had for a lonnnggg time. i'm just glad to finally have a doc who knows how and is willing to help me and i now have some kind of proof-not like my insurance company cares much about that and from what i hear disability is bad with lyme and other TBD's(tick borne diseases) too.

anyway, i am scared to go to a new doc even just because my history is so long and complicated and it is very draining and emotional for me to go over it all. my lyme neurologist that i started seeing about 3 months ago took 5 hours on each of the 1st 2 appt.'s i had with him just to try to get my history to give you an idea of the length.

i have been to so many docs in my day trying to find help and i have cried in many of their offices or after leaving because it is so emotional for me to talk about all the old hurt that i have from the past docs treating me like i was a liar or acting like i was overreacting or overexagerating... i am now soooo sensitive about this sort of thing an i think many of you can relate!

anywho-the only thing i can think of why i would need this "bone and back exam" is because they had sent me that loaded question 10 page questionairre to assess my work capabilities and i wrote that i have great difficulty often with writing, typing, anything with hands, feet, etc and other joints-including the big one-the back because i have major joint pain of varying degrees.

here's the thing, and the lymies out there prob know what i mean about "traveling joint pain" because it will be one thing one week and another the next. i could be in excrutiating pain from just a couple of my finger joints OR they may not bother me at all one day. also i am pretty flexible, which seems to give docs the idea that i am free of pain. those of you with fibro may have heard the term loosey-goosey syndrome... fibro can cause ligamant laxity and then you can become overly flexible.

also, when they poke and prod you(if they touch you even that is...), they are looking for your pain response. i have lived in severe chronic pain for so long that i can usually go without scowling, etc when something hurts just cuz i am used to it and in the past i think i just kind of adjusted, especially because people will stop touching you completely if they know that everything hurts!

i don't like to even have to think about these things, but what do i have to do? do i make sure to vocalize all aches and pains that he creates? i don't want to seem fake, but i usually wait to cry after i leave, not in the office(if i can!). there are so many stigmas out there with docs and especially with dealing with a doc and the diseases that i have been dx'd with because they may believe some crazy stuff that isn't even true about the disease and YOU.

also, i was told to bring all my meds. i understand that they can create problems sometimes because they can say that the side effects of the med are keeping you from working(and you may not even get the side effect...)!

i have heard that sometimes you can have your own doc do the exam and stragely i do have a lyme doc appt that day, which i do not want to cancel. do i take the chance and ask them if i can just use my own doc? do i need to see a DO like they were having me see? could i have my physical therapist or my chiro do it? or how bout my primary who has a sub specialty to sports med who i have known for 8 years do it? he def knows me the best!

also, i had a brain scan that shows a reduction of blood flow in the front and signs of possible encephylitis, lyme, or lupus. this is my only solid proof of the lyme for the insurance co. because of CDC's stringent and ridiculous guidelines. anyway, if i use it i am concerned that they could try to turn my case into a mental health one which takes longer they said. they may already do this as i was clear about my mental deficincies in my 10 page work anylasis i did for them.

my lyme doc said at the one appt. i should add babesia to my disablility claim, but said not to at the next appt. i will have to call there tomorrow if i remember to see if i can get her to help aid in this decision/process!

anyway, sorry to throw all this out there at you guys, but ever since i got real sick and now since the seizures, i just don't seem to be able to make decisions. i can't even seem to be able to pick off of a menu...!
please, any comments, thoughts, advice, etc. please give!

thanks a zillion katrillion! this means the world to me to have you guys here. i feel so alone sometimes, and i think of DS to get me out of some of my lowest moments sometimes!

oh, and other than the above mentioned physical/mental problems, i primarily deal with fatigue and chronic pain so debilitating that i shower about 1x a week and cannot do any normal household chores or anything usually. i am almost always so tired that i can't even get out of bed much.

-jen
Posted on 02/17/08, 06:02 pm