My Story :-)

By Jeanne Sunday, March 22, 2009

About 6 years ago the pain started as a slight pain in my thumb.  It would come and go from time to time the first year.  I was 15 then.  Within six months my hands just ached and I went to the doctor and she told me to take ibuprofen.  I took the ibuprofen a couple of times a week and it relieved the pain so I didn't think anymore about it.  By the way, I also have hypothyroid disease so my doctor puts the minor aches and pains in my hands off on that.  Four months later my blood tests are showing I'm very anemic and I notice a redness in my face that wasn't there before.  She gives me iron pills, I take them but I go back for more bloodwork and my blood level is still at an anemic level.  My doctor says I'm not taking the iron pills properly and she instructs me to take the pills properly and return in a month.  By the way, I was taking the iron pills correctly.  I feel my hands beginning to hurt worse and its beginning to affect my life.  I keep telling everyone around me, somethings wrong please help me and noone can seem to believe a 17 year old girl is actually in pain.  I tell my Mom something is really wrong and other things were so crazy in our life at that time she brushes me off.  So I suck it up and keep going.  I go back to my regular doctor and I tell her I'm still in pain.  By the way, I really trusted this woman.  She had been my doctor since I was a baby.  She tells me to keep taking the ibuprofen even after I've been complaining about this pain for almost 2 years.  She sends me to an allergist and I find out I have some weird allergies, haha, but it doesn't help fix any of my pain.  I'm tough, I have a high pain tolerance so I get thru the day.  I attend two semesters of college and it nearly kills me to get out of bed but I push thru.  After two semesters I couldn't handle anymore.  I left college and tried to figure out whats going on with me.  On the inside I feel so angry noone believes me.  My emotions are out of control on the inside and I'm so depressed.  My pain is getting worse and all everyone around me can say is what are you going to do with your life and when are you going to work but noone will listen to me when I tell them I'm in pain.  I call the doctors office where I go and I see two new doctors.  Neither one of them help me or direct me in any way.  They recommend I keep taking my thyroid medication and up my iron medicine.  I look in the mirror one day and I'm pale as a ghost.  I feel like my health is deteroriating and I have no idea why.  I take a shower one day and I get out the shower and look in the mirror and I notice my hair is thinning.  So, here comes my 19th birthday and I notice I'm getting weaker.  I can barely open a drink anymore and I feel so drained from the stress of dealing with my pain everyday.  I try eating better and avoiding certain foods.  It helps some, enough to keep me moving and let me get thru the day.  I'm not able to hold a job and I deal with alot of people being nasty to me because they don't understand whats wrong with me.  They say I'm just lazy.  After all, I'm a normal healthy 19 year old right?  Wrong!  I keep going to my doctor regularly and my thyroid levels are finally normal and I'm no longer anemic but I'm still in pain.  I quit going to my regular doctor because she isn't helping me.  I get more depressed.  I feel hopeless and I feel like noone believes me.  My 19th birthday comes around and my Mother is diagnosed with cervical cancer so my pain has to be put off again to attend to her.  I was devastated when my Mother was diagnosed so I was more stressed.  My pain all of a sudden goes into overdrive.  My long beautiful black hair starts falling out in clumps.  Which traumatized me at 20, by the way. I fight to get thru the day, I get my Mother to her cancer treatments and I take care of her after surgery even though I can barely move.  The next blow comes around about June 2008 right before my 21st birthday.  Which is in August, by the way.  My Mothers getting around better but I'm getting pain in my knee so severe I can hardly walk.  So, of course, I get more depressed.  My pain is so bad I can no longer get out of bed anymore.  My 60 year old Mother walks around better than me and she thinks I'm clinically depressed.  She's probably right, I probably was-Haha!  I start doing my own research and look up hand pain.  I find rheumatoid arthritis.  While my symptoms match exactly, I don't want to believe I have rheumatoid arthritis.  Especially after reading the devastating effects it has on your life.  I keep looking, hoping it's something else wrong with me.  Meanwhile my pain just won't stop.  One day I look at my hands and, I don't know how I had been so blind before, but my hands are twisting.  Both my pinkies are deformed and I have a nodule on my right hand.  I, now, know the medical terms for what I was seeing.  I transfer to another medical facility and they send me straight to a rheumatologist.  I think the doctors were actually scared when they saw my hands.  They looked so shock.  I had to wait 3 months to get into the rheumatologist and my hands, for some reason, are getting more deformed by the weeks.  I think possibly, it could have been because of the stress I was under at that time.  I meet with the rheumatologist and his eyes are the size of tennis balls after he sees my hands.  They run blood tests on me and I return a week later and he diagnoses me with rheumatoid arthritis.  I couldn't even hold my tears inside long enough to make out the waiting room.  I cried all day that day and I cried at my second appointment four weeks later too.  I've exploded on my Mom and my entire family for not believing me.  I'm feeling better these days though. I still have some mild pain and flare ups from time to time.  I still feel anger towards my family and Mother sometimes for noone believing me when I told them I was in pain.  And I wouldn't return to my old regular doctor, that brushed my pain off for years, if my life depended on it.  My hands are permanently deformed now with some damage in my wrists-I also can't extend my elbows normally.  I also have some damage in my left knee, which I have a cortisone shot in right now so I can get around.  So, to sum things up, I'm left with a limp, deformed hands I can't hide anymore, redness in my face, and I've lost 3/4's of my hair.  But it's okay because I can walk, I can write, MAC makes an amazing foundation, and I can get a Beyonce lace front wig now.  Smile  Thanks for reading my novel!

3/27/09 1:40pm

I am so sorry that happened to you!  (I can call you "kid" cause I am old enough to be your MOM LOLLaughing)  I can always use another one too!

 

I know what you mean about everyone blowing you off!  Had the same thing happen to me.  I think my disease is much more mild than yours, but after years of flaky things going on and flares off and on, testing neg to RA but havig textbook sypmtoms I fianlly have a diagnosis of sero-neg RA!  But am waiting to get in to a Rheumatologist/

 

Take care honey, be good to yourself and air it out here!  Its good for you to get that off your chest!!

 

Love and Peace

Kathyg lpn

3/27/09 1:40pm

I am so sorry that happened to you!  (I can call you "kid" cause I am old enough to be your MOM LOLLaughing)  I can always use another one too!

 

I know what you mean about everyone blowing you off!  Had the same thing happen to me.  I think my disease is much more mild than yours, but after years of flaky things going on and flares off and on, testing neg to RA but havig textbook sypmtoms I fianlly have a diagnosis of sero-neg RA!  But am waiting to get in to a Rheumatologist/

 

Take care honey, be good to yourself and air it out here!  Its good for you to get that off your chest!!

 

Love and Peace

Kathyg lpn

Anonymous
Oliveoyl148
4/ 9/09 12:40pm

Kiss

 

Dear Jeanne,

 

I cry when I read your story.  My story is very similar but I am feeling emotional for you.  Because I do know what you are going thru, but I am so much older & you are very young & have alot of life still yet to live.  Please hang in there & feel better!  People can be very selfish, but remember that Life is Good overall & you still have a very bright future if you want it.  Be strong & know there ARE people who care!

 

Janice

Anonymous
ALICIA
4/17/09 10:23pm

HELLO THERE,

I TOTALLY SHARE YOUR PAIN, I WENT THRU QUITE A BIT BEFORE I WAS DIAGNOSED THIS PAST YEAR.  TODAY I WENT TO SEE MY DOCTOR AND FROM SIX MONTHS AGO I HAVE ALREADY BEEN DECLINING, I AM IN SO MUCH PAIN, I HAVE BEEN TAKING METHOTREXATE, FOLIC ACID AND HUMIRA INJECTIONS TWICE A MONTH, AND NOTHING SEEMS TO BE WORKING, ONLY PAIN MEDS, I NOW HAVE TO START WITH A SERIES OF INJECTIONS ON MY KNEE WHICH IS CALLED SUPARTZ, IT IS JOINT FLUID THERAPY.  TALK TO YOUR DOCTOR ABOUT IT AND SEE IF THIS CAN HELP YOU.

HANG IN THERE, I KNOW IT IS NOW EASY BELIEVE ME, BUT YOU HAVE YOUTH ON YOUR SIDE, AND NOW YOU KNOW YOUR DIAGNOSIS, AND WITH TREATMENT YOU CAN BE HOPEFULLY PAIN FREE.

TAKE CARE AND GOD BLESS YOU,

ALICIA

Anonymous
Anonymous
7/ 8/09 7:54am

I felt so sad reading this. It vividly brought back memories of the three years when everybody felt that the pain was in my head since clinical tests were not showing anything. I lost 14 kg and was skin and bones. I was diagnosed after three years when the damage was already done. But you have to get through your life. Never ever give up and let RA overtake you. That is the trick against RA. It is your life and whether people understand your pain or not is of little consequence. Pain is there, will be there but just keep on loving yourself and you will get through. Best of luck

Anonymous
Tay
5/17/11 7:25pm
I am 15 years old n I've had the same problems sence a month before my 14 birthday. I took a blood test and it came back saying I was anemic. They gave me iron pills and told me to take them twice a day. I went back to the doctors to get the perscription renewed and they told me to get more blood drawn. So I did and the results came back saying I was no longer anemic. My pain started to get worse and i started to go to the doctors every two weeks. Over the summer when I turned 15 I had been laying in bed sleeping and I felt like someone stabbed me in my side and stomach. My mom rushed me to the ER. I stayed in the ER for 7 hours to get tons of blood tests done on me. Coming back with nothing to show. I am now turning 16 n a month and they still havn't found anything. It's getting so bad to where I don't wanna get out of bed, or even run in gym class (which is mandatory to do to pass).
By Jeanne— Last Modified: 10/26/11, First Published: 03/22/09