I may be young but my body is old.
Not long after being born my aunt who’s seen arthritis & knows the signs saw it in me. I was an easy going baby unless it rained. Nothing would help me. Some joints were visibly swollen. Despite doctors saying it’s impossible to be born with arthritis, I was.
When I was 6 I was diagnosed with chronic arthritis. I had regular visits. Nothing helped that they could give me. Eventually I had a period of relief. The doctor said the pains I had were growing pains. It was excruciating, I cried all night. The doctor still dismissed my pain & said I outgrew my arthritis.
My Mom (my aunty who took me in as her own) took me to New Zealand. The flight was painful, I barely slept. I didn’t tell my Mom though because I didn’t know it could be anything of significance. My left hip hurt daily on the trip. Some movements would make me cringe. Not long after we got home from NZ I ended up in the hospital. I couldn’t walk, I was in agony. I was 12. I was in the hospital for a week. Constantly on Demoral & Morphine. I still was crying constantly. Everything hurt but my left hip was the worst. I’d fall asleep from exhaustion but my hip would always wake me up from spasms. I was poked over 20 times in that week. Blood draws & new IVs from the pain meds making the site obsolete. This was before negative rheumatoid factor was fully recognized. The hospital staff couldn’t figure out was wrong with me because I had no rheumatoid factor. Finally after, beyond painful x-rays they told me I have JRA. They gave me steroids. The next day I was walking pain free, mostly.
I told my teacher why I was gone from school. He said you’re too young, you don’t have arthritis. I walked out balling. He still feels bad for telling me that.
I promoted to middle school, Valedictorian. High school was another experience.
Sports were hard. I couldn’t keep up. It was painful & embarrassing. School work got harder to do because I would have a flare up, be stuck at home & fall behind. I went through depression after depression. It was awful seeing everyone go through daily life so easily.
I was diagnosed as anemic. My levels were never higher than 12. So on top of arthritis taking a lot out me, I was exhausted from low iron. I would go through school some days struggling to stay awake. Nothing I did would raise my levels.
I was seen at Seattle Children’s hospital all through high school. At first the visits were spread apart. But they turned into once a month, then twice a month. I would end up getting so many kennalog shots that they would put me to sleep so I wouldn’t suffer. I was put on several different medications. They never worked.
I graduated high school. How, I’m not sure. I applied to 6 schools. I even took my SAT. I believe my SAT scores are what got me accepted to all 6 schools because my grades weren’t impressive. I decided to go to NMSU in Las Cruces, New Mexico.
Being in Las Cruces was great for half a month. Then labor day weekend happened. Up to that weekend my roommate kept turning on the AC, it would make our room freezing and my blanket cold & wet. I hurt every morning but she wouldn’t listen to my plead to stop turning the AC while we slept. Labor day weekend I was brought to the Albuquerque Hospital ER. After waiting for labs to come back to verify I was in pain they gave me a high dose of Demoral. The oncall doc almost had me transported to another hospital. It scared him that I was wide awake, & crying so hard when any normal person would have been sleeping. He gave me a steroid shot after telling him that would help. After that ER visit I convinced the school to left me have my own dorm. They conceded, I didn’t have to pay extra & even though I had a room for two people it was made that no roommate could be put in my room.
It was a long semester. I didn’t make it to class half the time. When I did make it to class it was always hard to walk there. I was on steroids off & on from campus doctors but eventually they stopped treating me. I couldn’t afford to see a rheumatologist.
When I got home. My Mom kept me home, she said I needed to get on disability. I fought for disability. All on my own. I moved to Seattle by the time I had my hearing. My defining moments were telling the judges ….
1. I was told by my rheumatologist I would be getting hip replacements in the next day 10-15 years.
2. Remicade was my last hope of finding a medication that would help me.
I got on disability. It was a proud moment because I did it on my own. As well as validation.
Seattle was great for me. I worked at Kohl’s. I would walk 4.5mi to work, work 8 hrs (standing & working the floor the entire time), walk 4.5mi home. Then I started working at WalMart too.
I got pregnant. I still had pain from my arthritis but never more than I could handle. I quit my jobs after I got further along & couldn’t handle it. I had a planned c-section because I knew my hips couldn’t handle birth. I was right because when my Daughter dropped in preparation for birth, I couldn’t walk.
A month after my Daughter was born I ended up in the hospital with a flare up. I was put on prednisone. I pumped for a month in hopes I could continue to breastfeed again. I realized it was a lost cause. I cried to my husband telling him I couldn’t feed our daughter, take care of her, & pump. He was understanding.
Eventually my arthritis got too bad, & I moved home. My Husband followed when I was done with school.
I started working again but that didn’t last long. My daughter missed me too much.
I tried working a couple years later. It worked as a part time employee.
At age 24, I got a core decompression. Turns out longterm use of steroids caused me to have A vascular Necrosis. Core decimpression didn’t work. A few months later I got my right hip replaced. My pain was unmanageable. Healing was a long painful process.
Before giving me the surgery they had me do an endoscopy to see if the problem with my anemia lied with having ulcers. The surgeon found ulcers over 10 years old, scarred over & over. He had never seen anything like it. He immediately took a biopsy to rule out cancer. Thankfully it was not. I did have H. Pilory.
After this & a visit to the ER during work…I was let go from my job.
Age 25, I convinced them to replace my left hip. I knew it was worse, always was. I asked for an MRI after fighting to get the hip replacement seemed never ending. After getting my results, the doctor conceded. It took a while to actually get the procedure though because my iron levels dropped so much from the first surgery. Nothing I did would raise my levels. Eventually it turned into a necessity.
I went into surgery being told I would more than likely receive one bag of blood afterwards. I even had a band with my name & bloodtype. The next day after getting my blood work back a nurse told me my levels were critical but not to worry, it’s only a term used. 5 minutes later, I had a bag of blood being transfused within 5 minutes. Followed by a second bag in 30 minutes.
My arthritis is more bearable now than it use to be but I’m still in pain daily. I’ve come to the point were I feel that I will never know what it’s like to pain free. I was told it’s a sad outlook on life. Really, it’s not, it’s acceptance. Some days are harder than others but also some days are much easier than others.
I can’t remember how many times I’ve given up. Wanted to quit life. I more than anything gave up on me. My family, & friends always pulled me through. I know I will continue to fight the feeling of defeat but I will always have family. They keep me going & keep my strong. I am a Mom, a Wife, a Daughter, a Sister, a Cousin, a Friend. I wear my scars proudly.
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