Disabled or not? I’ve often heard people comment this person or that person doesn’t “look” disabled. What is a disabled person supposed to look like?
If you saw me outside of the house, you might think I don’t look disabled. After all, I walk with help of a cane, but then many people use canes. I try to wear makeup most of the time when I leave the house, but often, I’m too tired or feel too yucky to bother with it, but I if you ask me how I’m doing, my response is, “great”.
I respond this way because I doubt you care to hear about my struggles. But when you make careless comments about someone who doesn’t look disabled and call them fat and lazy, it hurts.
For many years, I struggled with Rheumatoid Arthritis (RA). I was diagnosed in my late twenties, and I continued to work as a nurse. Being on my feet for hours on end. Taking call and going out at all hours night and day. With an autoimmune disease like RA, fatigue is overwhelming, so I was often too tired to do much other than work, but I continued because I still could. I pushed through the pain and fatigue.
My treatments over the years changed. I started with Plaquenil. I took it for several years, and it helped, but I had a major flare and the doctor added Methotrexate and Prednisone. This drug regimen continued for several years. I gained substantial weight on the Prednisone and developed a “moon face”. In spite of the side effects of these drugs, I pushed through the pain, side effects, and fatigue and continued to work.
During this time, the rheumatologist diagnosed me with Raynaud’s syndrome. This disease causes the blood vessels in the hands to spasm in response to cold or stress.
This syndrome causes the hands to turn red, white, and blue. As you can see in these photos, the syndrome caused my fingertips to blanch to white. When they do this, the fingers become very numb and tingly. It can become serious enough to cause severe damage to the blood vessels, sores on the fingers, and even loss of digits.
Next, I developed a sensation down both arms when I would bend my neck. It felt like electric shocks running down my arms. I mentioned this to my rheumatologist. She took X-Rays of my neck and sent me for an MRI. Before I had the MRI, she called and said I needed an appointment with a neurosurgeon as soon as I completed the MRI because the X-Ray showed some severe changes in my cervical spine.
After the MRI, I met with the neurosurgeon. He said I had two vertebrae that needed fusing ASAP because they were impinging on my spinal cord. Within a couple of weeks, I had the surgery. I continued to work part-time with my neck in a hard brace. It looked similar to this drawing.
The brace was hot, uncomfortable, and had to be worn 24 hours a day. I even had to shower in it. I could only take it off to change out the soft inside pads to dry ones after a shower. It doesn’t show here, but the back of the brace came up to the middle of my head. No way to style or dry hair. I couldn’t go to the hairdresser because she couldn’t get to the back of my head. I wore the brace for about six weeks.
A year later, I had another level herniate that needed fusing. So, once again, I was in the hard brace 24 hours a day.
During all of these changes to my health, I also started on Remicaide for the RA. After a year or so, I failed it, and I started on Enbrel.
Next, the Plaquenil started affecting my vision. Luckily, I was getting my eyes checked as often as recommended and my ophthalmologist caught it quickly. I stopped the Plaquenil and my vision returned.
At some point, I developed severe side effects to the Methotrexate and my rheumatologist stopped it and started me on Arava.
For several years, I had ankle pain that wasn’t improving. My rheumatologist sent me to get an MRI which said I had a chronic sprain. He then sent me to physical therapy. My therapist asked to see the MRI report. After she read it, she told me I had chronic sprains and some tears in almost every tendon and ligament in the ankle. All caused by RA.
Because of the chronic ankle pain, which did improve with therapy, I cannot walk more than a short distance. This reduced me to using a scooter for traversing distances.
My stepson loves to go to Disney World, so we take him often. I always use a scooter (in fact, I now have my own because I need to use one frequently). My days at the park grow shorter and shorter with each trip. I always go back to the room several hours before my family. I fear the day is fast approaching that I won’t go to the parks at all. I’ll hang out at the hotel while they enjoy the parks.
When we go to San Antonio, we must take my scooter even though we don’t spend much time hanging around downtown or on the river. I also must take it on cruises, because I cannot walk the distance on even a small ship.
I went on several years with no further complications, but I continued to have pain daily and severe fatigue. The fatigue isn’t a normal tiredness. With fatigue from autoimmune disease, you wake in the morning more tired than you were then night before. It’s bone-deep exhaustion that at times feels like your legs are too heavy to take another step.
After years of struggling to work, I decreased to part-time. When that became too hard, I went to PRN.
Next, I began having some memory loss, and increased neck pain and tingling sensations on my face, shoulders and arm. Along with these sensations, I began having dizziness and frequent falls. Multiple times per day. I had always fallen easily and fell many times at work. At the airport. You name it, I’ve probably fallen there, but the frequency increased.
I went to my neurosurgeon, and he did another MRI. It showed some additional herniations, but not severe enough to need surgical intervention at that time. However, he was concerned about the odd sensations, falling, and memory loss. He sent me to neurologist. At this time, the memory loss was to the point, I did not feel safe working any longer.
The neurologist did MRIs of my brain, cervical and thoracic spine. I had lesions in the brain that he felt might be due to Multiple Sclerosis. After much more testing, including a lumbar puncture so he could send some of the cerebrospinal fluid to the lab, he couldn’t decide if I had MS or not. With my other multiple medical conditions, he wanted me to see an MS Specialist.
Off we went to San Antonio to see her. After evaluating all of the testing, me, the MRIs, the lab results, she determined that I did not have MS, but I have an MS-like syndrome brought on by the RA. She said one of the lesions affected the memory center of the brain.
She and my rheumatologist worked together to choose a medication that would help prevent lesions, and treat the RA. So I started on Rituxan. It’s an IV treatment that takes six or more hours to administer. The neurologist continues to follow me and does periodic MRIs of the brain and cervical spine. When I asked her if the memory loss would improve, she said, “no”.
While I have no new brain lesions, the cervical spine has continued to worsen.
The dizziness continued to worsen, so the neurologist sent me to a neurotologist in San Antonio. When I first went, they thought I might have Meniere’s disease. Once they finished with extensive testing, they determined that I have vestibular migraines in addition the chronic migraine headaches, and ocular migraines. The vestibular migraines cause a sudden onset of severe dizziness. Depending on the severity of the dizziness, I may stagger around or I may fall to the ground if I try to take a step.
In addition to these things, I have trigeminal neuralgia. It causes severe, stabbing pain in the side of the face. I developed the condition in my thirties, but it’s continued to worsen over the years, which is common.
These are the conditions that contribute to my disability. I have several others that don’t play a part in me being disabled.
Many of the conditions I discussed above continue to worsen. I will require more neck surgery at some point because the discs are impinging on the spinal cord a little, but they will worsen. The RA can attack the heart, lungs, eyes, blood cells…in other words, systemic RA can wreak havoc on the body.
My drug box contains many more medicines in it than most ninety-year-olds.
If you read this, thank you for taking the time to try to understand that someone who doesn’t “look” disabled, may very well be severely disabled.