I want to invite you in to my life. This will be extremely difficult for me. I’m a private and sometimes quiet person, but what I have to show you is important. It’s a glimpse into the life of someone who is living with rheumatoid arthritis (RA) and fibromyalgia. I also have four children and one of them has a disease called tuberous sclerosis complex. He is multi-disabled. His secondary diagnoses include epilepsy and autism.
I want to capture my life in pictures to put a face to invisible diseases. I want to give a voice to others who also struggle silently. Many people, like my family, face difficult daily challenges, so I hope my story will serve as a reminder to be kind to others. You never know what challenges someone else is facing.
This is how you might see me in public on a typical day. (I say “might” because with four kids, I don’t always have a lot of time to apply make-up and fix my hair before I leave the house.)
Yes, I “look normal” yet I am very different. Here is life from my perspective:
On this day, I had another rheumatologist appointment. I was brought back to the exam room and four needles were arranged neatly on a tray. I have never been too excited about needles and this had me nervously thinking about the five injections I had already received since the beginning of the year. I suspected these syringes had something to do with the problem of pain in my shoulders that my doctor and I discussed at my last appointment. I tried to prepare myself mentally for what was to come. Waiting 30 minutes gave me time to doubt accepting these additional injections, but I reluctantly elected to take them in hopes of increased mobility. Unfortunately, it landed me in an ambulance with a suspected allergic reaction. It also altered how I could be treated in the future.
A few short weeks later, the only positive side effects of my shots had worn off. The anti-inflammatory properties were gone and my RA took over. I was experiencing my first RA flare. I could describe it simply by saying, “It hurt to move,” but I was unprepared for this kind of pain. I was shocked, reeling in pain from the smallest movements. Fibromyalgia gave me a secondary blow as it aggravated the area around the joint effected by RA.
In a matter of weeks, I went from a 34-year-old mother of four, who was keeping up with her children, to a woman unrecognizable to even myself. I revisited the rheumatologist and began physical therapy in hopes of any relief. At the advice of my physical therapist, I purchased a rollator (a rolling walker). It helped with my mobility when the pain made it too difficult. My hands hurt so bad that I could hardly grasp the handles. My body retaliated against me, and it hurt to stand up straight.
At the peak of my flare, the morning hours gave me the most pain, and I had difficulty getting out of bed so my husband began to help me.
He helped lift me to my rollator.
And had to help me on and off the toilet.
My knee was so full of fluid that I couldn’t get my leg over the bathtub. My hands hurt so bad that I couldn’t wash my hair, let alone squeeze the shampoo bottle, without assistance. He waited outside the shower to help me wash my body and hair and help me in and out of the tub.
Each day I would carry on and each night I would cry out and wonder, “Where is my life?”
Even my hands swelled to the point of making everyday tasks difficult, so I started a small dose of oral prednisone. I eventually had to take two a day. It has its own unpleasant side effects like sweating and mood swings, but it helped me function. It was enough to reduce some of the problematic swelling, but I was still in constant pain.
It wasn’t the only medication I was taking to help me through my flare, and there were more side effects. My legs were bruised from taking Naproxen. I was also getting headaches from my pain medication.
My son’s epilepsy didn’t wait for me to feel better. Sometimes he falls at the onset of a seizure. Afterwards, his limbs are immobilized and he’s frequently exhausted. His seizures are physically demanding for both of us. I often have to lift, hold or carry him to a safe place before and/or after a seizure. On this day, he had a two-minute seizure that took over his body. He couldn’t move so he begged me to lay him in bed. It was hard for me to carry his worn body to his bed. We were both exhausted. It was all too much and I sobbed as he lay there.
It was no surprise that the physical demands of motherhood and my son with special needs began to take a toll. The pain became intense in my shoulder so the doctor ordered an MRI. I found out that RA had torn my shoulder to shreds. The six-paragraph explanation made for interesting reading. I refused surgery since 12 weeks of recovery and therapy isn’t realistic for a mother like me.
(I couldn’t even get the full summary in this screenshot.)
Another doctor appointment. Here I am waiting to see a pain management doctor. Nothing seems to be as cruel as living with chronic pain. It’s a daily struggle that I am desperately trying to conquer.
Another bad day for my son’s seizures. On this day, he fell to the floor before I could reach him. My leg was so full of fluid that I couldn’t get to him before the seizure knocked him to the ground. Although I was thankful he was inside and on carpet, the guilt of being unable to reach him before he fell ate away at me. He is pictured here after he finally stopped shaking. He once again had no control over his arms or legs, so I had to lift him to the chair and sit with him until he could move.
I pray for days when we cuddle just for the sake of cuddling, not because a seizure has prevented him from moving his own body.
I may not be strong, but I am determined to hold my baby when he needs me.
Between my child with special needs and myself, we spend a lot of time at doctors’ offices and in hospitals. What’s startling is the realization that we will never get a financial break from the burden of disease and disability. It’s disheartening when my medicine cabinet is fuller than our pantry.
In the evenings, the kids often find me elevating my leg. Since my scare with steroid shots, I have been trying to allow my body to absorb the excess fluid naturally. It hasn’t been easy, and I often need to elevate it to find relief. I also have a cyst on the back of my knee that may never go away or so I have been told. On this night, my daughter found me, and I’m glad she did.
Most of the time I look like a normal mom. I snuggle with my babies.
That’s my family posing for a lot of pictures during a rare trip away from home.
I can also be found at the bowling alley with my family although you won’t see me bowl. My hands hurt when I pick up a bowling ball, and my body aches when I roll a ball down the lane.
Although I am allowing a glimpse into my life in hopes of changing the way others perceive it, there are still those remaining invisible facets to my life that are the most important.
In the early morning hours during my RA flare, my husband got out of bed and helped me do things he never would have imagined when we wed a short 10 years ago. The jokes we made about caring for each other in old age have abruptly ended — just like my once healthy youth. And I realize in my worst moments, love and the affectionate care of my spouse intertwine much like his arms embracing my weak frame. In our darkest and hidden moments, we find love. It triumphs over every minute I wake in pain and he comes to my side, over every seizure that crushes the delicate body of our little boy and any doubt that we will make it through every last setback together.
So when I am asked, “How do you do it?” I may not always have the best answer, but I do know I will make it because I don’t have to do it alone. I know I am loved unconditionally. And this is the most important thing you should know about my story: True love is not conditional, true love sees past differences, disability, fear, sadness and disease. Love is my husband looking past my suffering and weakness and still seeing the woman he loves. Love is the confidence I have in his fulfillment of the promise to love me “in sickness and in health.”
Today, I’m getting better and working with my specialists to find the right plan to manage my disease. This will not be the last flare I will see, but the goal is to reduce the number of them, manage my pain and slow the progression of my disease.
The most important goal for my health is to be a productive wife and mother. I most likely have a lifetime of care with my son with special needs, and I want to have that privilege as long as my health allows. We also continue to work on improving his life despite his disease. It has been hard but I look forward to every moment I am given, good and bad. The good times give me hope and the bad times allow me an appreciation of them. And love sees me through it all.
Follow this journey on CrossRoadTrippers.