Ankylosing Spondylitis: Our Family's Experience with Rheumatic Disease, Part 2
For the beginning of this story, see Ankylosing Spondylitis: Our Family's Experience with Rheumatic Disease, Part 1
While I appreciate very much that the surgeon didn’t rush into a risky, and possibly ineffective, surgery, I was more than a little put out that it took more than two weeks, my husband suffering all the while, riddled with anxiety about surgery, for them to decide to refer him to a rheumatologist for a rheumatic disease. I’m not a doctor, but it seems like the obvious course of action to me.
The rheumatologist didn’t have any openings for nearly three months, so they scheduled the appointment and told us to wait. Wait? He had questions with no answers, pain that refused to abate, and a quality of life that was deteriorating quickly. Sure, we’ll wait. In the meantime, we tried to get on with life. On one shopping trip, we walked through the medical supplies section of our club store, and I noticed a folding cane. I remember thinking that it would be perfect for him. He could keep it folded up when he didn’t need it, and have it with him when the pain flared up. He agreed that it would be a good idea.
It was at that moment that I began to grasp the surrealism of the whole situation. Here we were, surrounded by walkers, wheel chairs, and adult diapers, discussing what cane to buy for my thirty-four year old husband. We had completely skipped middle age and become old people practically overnight. Even then, I couldn’t process any feelings about what was happening. I began the morbid task of planning what life would be like from now on. How long before a cane wasn’t enough? How could we afford to move into a handicap accessible house? When would he finally have to go on disability? We couldn’t survive on 66% of his income. I would have to go back to work sooner than planned. Besides being a stay-at-home mom, I saw other dreams slipping away from us… travel, adoption, ministry… a normal life. Still, no emotions would present themselves.
Shortly after he was referred, my husband got a call from the rheumatologist’s office. They had reviewed his file and decided that he should not wait. They had an opening and wanted to see him as soon as possible. Finally, we had a doctor who seemed to care what we were going through. They would see him within a few weeks.
A few days before the appointment, I attended a baby shower for a friend of mine. I had not seen her in a few years, as her husband was in the air force and they immediately went to England after their wedding. As I was getting ready to leave for the party, the baby was napping. Although I was still breastfeeding him, he was old enough to do without me for a few hours, so I asked my husband if it was okay just to leave him there. I could tell by the anguished expression on his face that he wanted to say “yes”. The two older kids were no problem, but if the baby woke up, it would take him several minutes to get to the crib, never mind lifting him out of it. I woke him up and took him with me.
I don’t remember how the conversation turned that way, but at the shower, I mentioned that I had to bring the baby with me because my husband hadn’t wanted me to leave him at home. I realized immediately how it must have sounded…deadbeat dad too cool for childcare. But the conversation had gone on without me, so I didn’t have a chance to clarify. Later, in a quiet moment with my friend, she asked me how the family was doing. We talked a little about the kids, and I showed her pictures of them. Then she asked how my husband was doing. I paused for a moment, then answered, “He’s been better.” I explained about the diagnosis and the upcoming appointment. When I told her he was using a cane, she seemed shocked. I almost lost my composure for the first time. Then I went on to explain that that was the reason the baby had to come with me.
The next day at church, I rounded up my Sunday School teachers for our weekly prayer time. We shared our concerns and praises. I talked about the illness, and the appointment, and our hope for some sort of resolution. I was the children’s ministry leader, so I started the prayer. But I couldn’t finish it. Suddenly overwhelmed with it all, I began sobbing. My dear friend finished the prayer and I found myself surrounded by these caring women who, quite frankly, weren’t accustomed to seeing me cry. The door to the Sunday School room stayed closed for a few extra minutes while I regained my composure.
That night, after we put the kids to bed, we sat down and began to talk in earnest about the disease. He finally confessed that he had been trying to cope with it on his own, and had not wanted to let on how much pain he was really in. And I confessed my resentment, my lack of understanding, my selfishness. I told him, “I didn’t think you were really sick.” I apologized, and he forgave me. We cried together, not knowing what the future held. Then again, who does?
Frustrated that he always forgot what he was supposed to ask (he said it was nerves), I went to the appointment with him, armed with a notebook full of questions. When the doctor came into the exam room, he introduced himself to my husband, then turned to me and said, “And you’re here to ask the questions.” He started talking, and by the time he finished he had answered all of my questions and then some. He then told me that I wouldn’t need to come to any future appointments…he would make sure that my husband knew everything he was supposed to know.
My husband mentioned that the surgeon had wanted to operate, and the rheumatologist scoffed, “All surgeons want to cut people open!" The x-rays from the back surgeon had somehow gotten lost on the way to the rheumatologist, so he ordered more. As he placed them up on the lightbox, I noticed something immediately, but thought it was my imagination…after all, I’m not trained to read an x-ray. But the rheumatologist confirmed it. “Your spine is not fused.” Visible even to the untrained eye were clearly delineated vertebra. The calcification was noticeable, and they were visibly become squared off where there had previously been curves. The hip sockets were also calcified, and the openings where the joint was designed to move freely were becoming smaller. We were told hip replacement surgery would likely be necessary later in life.
The rheumatologist began discussing treatment options. He would prescribe an NSAID (non-steroidal anti-inflammatory) as well as a biologic medicine that acted as an immunosuppressant. The biologic was used to treat numerous rheumatic diseases, including rheumatoid arthritis, psoriatic arthritis, and Crohn’s disease. My husband would get a prescription for the NSAID, but the biologic had to be administered in a bi-weekly injection. He would come back to the office in a few days to learn how to dose himself for the first time. Leaving the doctor’s office, I felt relieved that we finally had a doctor with some answers. I didn’t see things getting much brighter, though. Although we hoped that the medicine would slow down the progression of the disease, I thought my husband would stay at the level of disability he had already reached.
The next day, my husband called me from work to inform me that he had, after taking only the NSAID, been able to RUN up and down the stairs in his building. This was staggering news…he had been on any number of prescription painkillers before with no results at all. When he came home, he was walking nearly as well as he ever had – and we cried, again. After he started the injections, he abandoned the NSAID almost completely. He now only uses it when he’s especially sore from yard work or remodeling.
Our lives now are what you might cautiously call “back to normal”. Although the disease doesn’t govern our lives the way it used to, we do think about it daily and how it will affect the decisions we make. We purchased a new house…a ranch-style home that could be converted to handicap accessible if necessary. He will never be able to be a firefighter again, avoids ladders, and shouldn’t take up skiing, as the disease causes brittle bones. A minor car accident could result in a spinal fracture. Because the medicine is an immunosuppressant, he has to avoid exposure to tuberculosis and any kind of respiratory ailment. He gets his flu shots regularly and was one of the first in our family to be allowed the H1N1 vaccine when it was in short supply. The medicine comes with concerns, warnings, risks including cancer and heart failure. The other option is certain crippling disability - the rheumatologist told my husband early on in his treatment that before the development of biologic medicines, ankylosing spondylitis patients had a high suicide rate. We live our lives and try not to worry too much about what the future will hold.
At time of this writing, our entire family, my husband included, have just achieved green belts in tae kwon do. My husband and I will leave in a few days for a medical mission trip in Central America. We just had a weekend visit with two potential adoptive children. He’s able to play with them now without pain. At his last rheumatologist visit, he was told that his flexibility is the best it's ever been since starting treatment. We try not to take it for granted. We are thankful for each day that he can be free from pain to share his life with us.
Links for Ankylosing Spondylitis
- Spondylitis Association of America - Ankylosing Spondylitis and Related Disease Information & Su
Ankylosing spondylitis and related disease information. Ankylosing spondylitis symptoms, diagnosis, treatment, medication, educational materials, brochures. Spondylitis patient support, message boards, physician resources and more. SAA is a non-profi
- The Faces Of Ankylosing Spondylitis
- HUMIRA (adalimumab)
Official site from Abbott Laboratories. Includes uses, safety, and prescribing information as well as patient resources.