It seems kinda fuzzy now, but as I look back on how I got diagnosed with polyarticular JRA all I remember is that it seemed like it didn't take long for me to find out what was wrong.  I was only seven at the time and I can't remember if that is when the problems started or if I always had problems that were not noticeable.  I do remember that it took me forever to learn to tie my shoes, and I'm not sure if it was because it hurt or what. 

Anyway,  I began to wake up in the middle of the night screaming in pain.  When my mom would wake me up to ask what was wrong (she may have thought it was nightmares like any other parent would at first) I would tell her that my legs hurt.  I got to where they would cramp up and I couldn't straighten them out.  I also suddenly developed a ganglion cyst on my wrist that was "squishy".  I could gross other kids out because it moved a little. I also developed a trigger finger on my right hand.  I know that it took a long time to get to where I could move that finger again.  My mom took me to a local doctor that was, in my opinion, too old to be practicing medicine.  Since that time, I've heard older members of my family say that they felt that back in the early days of his practice, he was responsible for the deaths of a few members of the community, but it was never mentioned in public.  They've also said that they wouldn't take an animal to him for anything let alone a child.  He informed her that it was nothing to be concerned about.  It was "just growing pains" and I'd outgrow it.  At first, that seemed true because I would have problems and then be ok for awhile.  I remember that my grandmother and aunt took me roller skating one time and the next day I couldn't move.  My grandmother was from the "no pain, no gain" school and forced me to get out of bed and walk around on her farm even though it hurt so bad.  I must admit that after a little while of walking, I felt a little better.  Finally, my mom realized that this wasn't growing pains and took me to a local hospital.  They ran some tests and did x-rays and then refused to touch me.  They told her that they felt it was JRA and referred me to Riley Hospital in Indianapolis.  After a week in the hospital, it was confirmed that I had JRA.  I got to know the staff in the department pretty well.  I had appointments bi-weekly for what seemed like forever, then  they went to monthly, the every other month, and then six months.  By the time I was in high school I was only going yearly and then I was finally told that I needed to be checked if I was having problems.   

When I was in fifth grade, I had a surgery on my right hand so that I could make a fist with that hand.  I spent two weeks in the hospital and had to wear splints for a long time after that.  At the time I was diagnosed, they were just starting to use ibuprofen in children so I was put on that as a study.  They considered gold shots when that didn't help, but put me on naprosyn instead.  Of course that meant frequent tests on my kidneys to make sure the NSAIDs weren't hurting them.   

All throughout school, I was unable to participate in gym classes much and in high school, they took me out of them completely.  When I was first diagnosed, I was given a very bad scenario of my future.  I was told that I would be in a wheel-chair by the age of 16 and never be able to walk again.  I'd be on medicine the rest of my life, I'd never work nor be able to take care of children.  Needless to say, aside from the medicine issue, I proved them wrong.   I was considered in remission from about the age of 14 on.  I still had pain and limited range of motion because of joint damage that had been done.   I tend to push myself farther than I should at times.  But, I pay for it.  I just hate having help if I can manage things on my own.  When I was younger, it was hard to make friends because children being what they are, have a hard time accepting others that are different.  I was unable to do many of the things "normal" children do.  Despite all of that, I wasn't an unhappy child.  It taught me many things.  I like to think that I am more understanding of other people's differences because of what I went through.  My RA also taught me that there are invisible hurts in everyone's lives, some physical and some not.  

 My husband Garrin is such a big help in my life.    He is so good to me and I really don't know what I'd do without him.  He always senses how I feel and tries so hard to take up the slack for me.  He constantly tells me that I push myself too hard and would baby me if I let him.  He has been so understanding of my pain.  I figured that it would be an adjustment for him when I began having trouble at work since when we met I was pretty much pain-free.   He has stood by me even when I have been impossible to be around.   

I am currently not working.  This is frustrating but has allowed me to be at home for my son.   I have not worked now for three years.  I stopped working because even though my employer was wonderful about making accommodations I was not working half of my scheduled hours.  The work itself wasn’t the problem so much as attendance.  By the time I’d get ready and drive to work, I was too exhausted and in pain to do my job well.   On the good days, work was exciting.   I hated leaving my job but did not feel it was fair to my employer and co-workers that I couldn’t be depended on to be there.   Vocational rehabilitation was little help to me because they said my skills made me a good hire but my issue was attendance.    

Being home has not only allowed me to give time to my son, but it has allowed me to become active in online support groups.    I am a moderator for 2 email groups as well as Assistant Editor of a newsletter devoted to Autoimmune and Chronic diseases.   I’m also active on various message boards.   Aside from the health aspect, I also am able to work on my other hobbies of genealogy and reading.     

I am in the process of sorting out health issues with a new doctor.  In 2001, I was diagnosed with fibromyalgia.  In 2002, after giving birth, my doctor at the time started treating my RA again.  It was the first time I had been on a DMARD.   I started with Plaquenil and then added methotrexate as well as prednisone and a host of medications to help the fibro.  It was during this time I found out I had osteoporosis as well as OA and scoliosis.  It turns out that there was evidence of osteoporosis showing on my x-rays as early as 1989 but neither my mother nor I remember hearing about it.  I lost my insurance in 2003 and was untreated for some time.

I gave up a lot of activities when I was untreated.  Small things took more energy than they should.   Grocery shopping put me to bed the day after a trip to the store.   I avoided playing on playgrounds with my son and instead just watched him with my husband.   I had to let go of trying to do the strenuous chores around the house and even need help doing the easier chores at times.   This frustrated me quite a bit.  I am hoping that with good treatment soon I will be able to take up those things again.    I don’t expect miracles out of pain treatment (or any other treatment for that matter).  I just want to have a more normal life.   I know that I’ll not be pain free.  I just want less pain.   I am hoping that my new doctor is understanding of that.    

I fully believe that despite living in pain, I can make a difference in someone’s life.   And I can lead a full life despite the pain.   Learning is essential to managing chronic disease.  And while much of my life does focus on learning about diseases and ways of managing pain, it’s not the sole focus I have.    It is a big part of my life though and accepting that it’s part of me has made a difference in my outlook on life.  Pain has taught me quite a bit.   I have learned to not respond to stares, dirty looks or even comments when I park in a handicapped space.  I get those looks frequently because I look fine.   Some people have even accused me of stealing a grandmother’s handicapped placard.  I’ve decided if that happens again, I’ll tell the accuser to feel free to call the cops on me.   I have learned that there will be times I need to use electric wheelchairs in stores.  Because of my age, people tend to give an inquisitive look at me when I use them.  But I have learned to ignore the looks.   I’ve also learned to make light of my limits and take a silly approach to using a wheelchair or electric cart.   I had one incident where my husband was pushing me in a wheelchair through the mall.  He has a habit of picking on me and I pick back.   He wished to go into a store I was unable to easily maneuver in so I’d asked him to leave me outside the store.  His comment when he left me was that I’d better be nice to him or he’d walk off and leave me someplace.   An elderly woman came over to me and asked if I was ok because he’d said that.  I grinned and told her it was our way of making me feel less helpless about needing a wheelchair.  He threatens me to make me laugh and then I explained he was far from serious.  I think she realized the point of our antics.    

I have also learned that speaking up for myself and others is an empowering thing.  I’ve had incidents in  a few local stores where I was using a wheelchair and was unable to get through aisles.   I complained to store employees and they were insulting in speaking to my husband rather than to me.  The employee completely directed his comments to my husband despite my husband never saying a word.   So, I called management and got nowhere.  I ended up calling the district manager and was pleasantly surprised that he was willing to take a look at the situation.  He followed up with me recently saying he’d been working with this store and others in his district to correct issues like this and he had invited me to tour the store with him.   I’ll likely be stopping in just to check on things he has had the store work on.   I was able to direct him to some training information from the ADA on how to interact with customers with disabilities.    I will now be contacting other stores I have had problems in just to raise awareness of the situation.  I have the ability to be mobile but because walking does wear me out, I choose to shop using a wheelchair.  I cannot imagine what it  is like for those who are not mobile to try and shop in places where the law is not followed properly.    

Much of my life, my pain has not been properly controlled. I’m not sure if it is because doctors are hesitant to prescribe narcotics to me due to my age, fear of addiction or what.  This is an issue I feel strongly about.   We have a right to proper pain control.   With responsible prescribing and working properly with a patient, the doctor can adequately treat pain with little fear of addiction.   Many doctors hesitate to do this because chronic pain is not a priority to them.  Their priority seems to be the underlying cause…but after years of inadequate treatment of the underlying cause, the pain is not going to disappear without proper treatment.    

I’ve been happy in the last few months to find a pain management specialist who recognizes and treats my pain not only with pain medications but with other forms of therapy as well.  He listened to my list of diseases and conditions, asked what had helped in the past and started there.  He also asked me to try a newer medication for neuropathic pain.  It and the medication I’ve since switched to that is similar have made a huge difference for me along with the pain medication and muscle relaxants. Through my pain management doctor I have been seen by an excellent rheumatologist. I have also started medications for my JRA as well as having had a joint injection for specific shoulder pain.  My pain management doctor also wished to see if nerve blocks were helpful for me.  I underwent a series of three nerve blocks in my right lumbar area.  Those blocks led to a radio frequency ablation.   At this time I am awaiting a decision as to whether he will do the left side.  Finding a compassionate doctor who listens is so worth the search.   It has taken me quite awhile to find doctors who listen and also recognize that after 20 plus years of living in pain, I know what helps and what doesn’t.  

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