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i went to the doctor today. now on top of dermatomyositis,psoriasis,avascular necrosis, pre diabetes i also have psoratic arthritis which i now get to give my self shots for. does it ever end? has anyone else had one disease turn into all these other ones or any other ones i went from being entirely healthy my whole life then when i was 21 my health collapsed
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On Sep 26, 2008, at 3:35 AM
JENO52006'
I Know that things are tought as i've been going though a lot myself and need help but please hang in there as I am you wouldn't be anything but a waste of
a person that seems kind, and if you need a friend I'm
here just write to me......
Sincerly your,
Shelly..............
Thank you . Its just aggrivating at times. and they want to put me on this injection called humera that has awful side effects. I was on prednisone actually still am and i got pretty much every bad side effect. Im dealing with it better with the support of friends and family but it helps to get advice and talk to other people who are dealing with simular situations.
On Sep 27, 2008,at 11:10 PM
jen052006'
Hi it's Shelly I'm so sorry about what you're going through I don't have any of your alments I have a rare
disease which so few people have that it's hard to find anyone to care for me, I understand all the side effects of the meds tho as I have been there many times infact last year I have to be taken to Houston again as in the past as two of the local neurolgist had me on so much that I was toxic, so my new neurolgist in Houston had to detox me before he could find out the real problem? Why does your doctor have youon Humelian as that is what my older sister and other family members are on but they all
have childhood diabetics and must have it? Are you a
childhood diabetic as well as all other problems as we both have so many that I can feel for you....
So sorry for not getting back until now but i've been down myself since i had surgery two days ago........
I do hope that things get better and when you need a friend I am here just leave a message and i'll get back
as soon as i can.......
Love your,
New Friend Shelly........
Yes Jen, I have many of these things also, I am 48 and have to struggle with the ups and down health issues. It's really hard to keep track of what is causing what. I know allot of doctors are working on what the mutation has caused these things, for the short version, I study this stuff daily and won't stop fighting until I help the researchers find what is wrong. I have 29 different medical condition and just this past month I have had three specialist tell me I am to complicated for them to treat me. Mayo Clinic has told me I am over and above their expertise, John's Hopkins has told me they can offer no help at this time. NIH told me they will keep my records on file and I would have to wait for science to catch up. All I know is it won't an easy path but some of us need to walk it. I will just keep reminding the medical world I am here when you are ready. I hope you are hear with me.
Love and Light,
Tamyra
On Sep 27, 2008, at 8;18AM
jen052006'
Morning it's Shelly just thought i'd check in and see if anything was better and too let you know if you need a friend I am here for you? What is the phot of and where do you live if that isn't to personel. The photo is pretty but I can't tell what it is susppose to be as there is a shadow on it...... For someone so young you sure did get married young I hope that all is well with you and your husband, keep up the fight as we do don't ever let anyone get you down your to good for them, just do what you need to as I do and think about the others that we have met that are worse off they we are and can only hope to meet one day real soon.......
Love your,
Friend Shelly...................
Good Morning Shelly! Sorry its taken so long ive been taking care of my grandparents who both have cancer. I live in Phillipsburg new Jersey and the picture is me at Niagra Falls Canada on my honey moon. Yea some say I got married young but i fell in love young my husband and i have been together since i was 17 and he really is my rock through all this.I knew it was right so i figured why wait. Thank you for all your encouraging words I am feeling alittle better but my thoughts have been shifted from myself to my grandparents. Its been rough for me but 10 times rougher for them so I try not to complain to much. I hope you are healing well from your surgery and getting lots of rest i had my hip replaced in august and the rest really helped me heal better! Hope all is well Love your friend Jen
Thank you! Im so sorry you have to deal with all these disease. My doctor is just about at the point where she just doesnt know what else to do. i seem to have developed every side effect possible from prednisone and my body doesnt respond well to alot of the medicines i need. I do alot of research also and really would like to go to a place simular to the mayo clinic but everytime the doctor sends a letter they say im not a good enough canidate id hate to see what is considered a good canidate and i dont want to get to that point of no return before they will se me how did you get in? did you do it yourself or did your doctor help you love jen
On Sep 28, 2008, at 11:05 AM
jen052006'
Shelly GoodMorring to ya my Mommy, had I and my older sister get online and do research as we have mor time however it was harder for me as i am just learning the computer but my sister has the knowledge of computers from school, and her honey does that for a living so he's the expert in the family.... So we read until we saw one that loooked as if he was one of the good ones but my doctor is a neurolgist but if you would like his name and nimber I can give it too you but you will have to call or fax all information to him as he doesn't have a email address, mommy called and talked to the resopenist at lenght and told what I had been through and that I needed someone that would be willing t care for me and he called back asap and said he wanted me over there to see him on such and such date and to pack enough clothing just in case I was to be admitted into his hospital that day which I wasn't until the next month but he got to see first hand what I had been going through as I had a full blown seizure in front of he and the students that were in the room with us......
So I can't thank him enough as he takes those of us that are considered lost causes...... I am so sorry about your Grandparents i understand as I and my family have lost many family members from cancer it's bad but it least you and i know it's coming where as my Daddy was Murdered twenty- seven in a half yrs., ago and My Cousin just seven years ago so that was do to evil not illness..... I jen have ( ECCL ) My Older Sister is the diabetic in the family plus two Cousin now but my sister has had it the longest of all
three as she was found out to have it before I was born.... I'd give you more information later I don't want to blow your mind as I have told you so much just now....... I hope that you and your family have a Good Day and let me know if I can be of any help......
Love your,
New Friend Shelly............
My doctor gave me a referral and records package, I made the appointment myself. I started with one department, that doctor referred me around to the other clinics with in the hospital. I was their about five days. If you are in New Jersey John's Hopkins would be a better choice, they also work very closely with NIH. Also the autoimmune foundation will look for referral's in your area, you will be surprised if you are just starting the process of treatment, lots and lots of very great specialist are on the East Coast. Good luck, remember find a main out of control area you need help with, focus on that, that specialist will help you from there.
Love and Light,
Tamyra
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