A Caregiver’s Side of RA
It’s 5am and I just got done breastfeeding our 8 month old for the third time this night. I lay my head down for a second and hear my 3 year old crying. He was woken up by his 4 year old sister turning their bedroom light because she just wet the bed. I calm him down and help her find fresh things hoping that by some miracle they will both go back to sleep.
When I get back to my bedroom, my husband’s alarm is going off, but he is just laying there moaning because he didn’t take ibuprofen last night and now he is in too much pain to roll over and turn the alarm off. He asks me with shame in his voice to turn it off for him. All the commotion has woken the baby which is followed by the other two kids coming in to see why baby is crying.
We move on to the living room to find some cartoons to watch. I bring my husband his phone so he can call in “sick” for work (again). In the kitchen I ignore the mountain of dishes no one felt like doing last night and inhale deeply the aroma of coffee dripping in the pot–another day of battling RA.
When we were engaged eight years ago we had big dreams! We dreamed of backpacking adventures in the Rocky Mountains. We dreamed of having lots of kids and a decent house that we would spend weekends remodeling together as a hobby. We loved to fish, ride bikes, and workout together. I was impressed at his timing on his 5 mile runs. I joked that he was a workaholic because he was so dedicated to work he was one of the rare employees that always got the “perfect attendance” award.
Six weeks before the wedding he became very ill. He thought it was food poisoning or a really bad flu. He called me in the middle of the night panicking because he couldn’t get out of bed. After a few days the stomach issues subsided, but the joint swelling, pain, and fevers persisted. A month after our wedding he was diagnosed with juvenile RA. I cried when I read the warning label of the medicine they prescribed him.
Four months on the medicine—he was better! The nodules on his elbows disappeared and we even had to go get his wedding ring downsized because his knuckles were so small compared to how they use to be. We knew very little about RA so we assumed it was never RA to begin with and just some silly fluke that was gone now. (“Arthritis isn’t something that just comes and goes!”) He stopped seeing the doctor and taking the medicine.
For years he did really well. He would be extra tired or ache a lot at times, but we could dismiss it as just his job wearing him out. I’ve been living my dream of being a stay at home mom to three amazing children with plans to start working once the kids all start school. He worked so hard to get all his training and license to bring us where we are today.
The summer of 2012 we had a month full of life changing events. The stress was too much and he became very ill again. The same as before, the stomach issues went away but the intense pain and joint swelling stayed. His dad suggested we look into celiac disease since it runs in the family. I made an appointment with an “allergy specialist” with turned out to really be another rheumatologist. Blood test, sonogram, and xray all confirmed that he has “significantly high levels” of RA.
We still didn’t take it seriously. It wasn’t until I mentioned to my neighbor that my husband had arthritis and she replied “I hope he just has arthritis and not rheumatoid arthritis!” I couldn’t get those words out of my head. Why? What was so special about rheumatoid? So I did research and my heart was crushed as it all started to sink in.
My husband will turn 29 next month and instead of backpacking gear I’m wondering if he would agree to use a cane (“just around the house”) because I hate seeing him struggle and constantly calling out for me to assist him.
We’ve been through three doctors and 5 different medicines in the past year. We’ve tried the turmeric, celery seed, fish oil, pectin, bolage, BioFlex, and even changed to a totally low fat vegan diet. He’s found no relief and each week his hands look just a little more deformed than the one before.
I feel so guilty being a stay at home mom while he struggles so much to work full time. We make too much money to qualify for disability and he can’t keep up with the kids so him staying home is out of the question. There’s no way I could make enough to support us plus pay for childcare. So for now we are stuck.
Our closest family is an hour away and no one will listen when we try to explain how serious this is. We’ve been told we just need to be more positive. We aren’t trying to be negative, we are simply trying to face reality. They doubt this will ever really cripple him… I just want to cry because they don’t see that somedays he is crippled and that those “somedays” are happening a lot more frequent than ever before.
Before things got this bad I use to be the person that showed up with a basket of food or sent a card if I heard you were sick or down. I’d mow your grass, paint your kitchen, or babysit your kids for free if you asked. No one has offered help. I’m silently drowning alone while all my “friends” and neighbors stand by and shake their head in disappointment. I keep hoping that tomorrow we will wake up from this nightmare.