Tuesday, August 6, 2013

Of Bone Grafts and Crafts

In previous posts and on twitter I mention that I write my blogs on my smartphone. It has been a long difficult summer of bone grafts and crafts and I have tried to share it with you in many draft forms on my infernal device.

My writing time is when the baby is asleep. I begin a blog, sitting on the patio (my office) while the baby naps or late at night. I thought my drafts were saving and that I would go back and post them for you. The baby loves my phone. They were deleted.

Instead I find my phone, or wrestle it from her, to discover that apps have been arraigned or deleted and the baby has taken dozens of photos of her feet, the floor, the lamp or whatever she sees. At first I found these photos delightful and looked at each one. I told my husband that we should save them or print them to share with the world the perspective and genius of our toddler. Now I delete them. If you think an exhibit of toddler photography would be a fabulous idea, let me know.

I lost the month of June being the Craft Mom for camp. It was an interesting experience and I tried to write about it many ways. Ultimately I realized what happens at camp stays at camp and I was allowed a glimpse into the world of little girls that reminded me of the stories of fairies, I'm still recovering. More about that later, in a novella. 

Camp gave me a chance to stay with my twelve year old and focus entirely on her for a few days. I tried to run the craft room and with the help of a small pharmacy and one migraine shot made it through the week as active and cheerful as the other mothers. It did take me a week in bed to recover but it was worth it and I got a t-shirt. 

Before camp I cancelled a dentist appointment to fill a cavity. I have a deep childhood phobia of the dentist from an experience of having teeth removed and the pain and migraines that followed at age 7. The spaces two of these teeth where removed did not have adult molars grow in. I just fear the dentist. 

The cavity had gone to the root and on July 5, I met with an oral surgeon to schedule having the tooth removed. He explained why I also needed two bone grafts in my jaw. I had the weekend to think about it. 

I couldn't have asked for better resources. (Including a wonderful new friend I met at camp, it was a lovely moment to make a new friend at camp, an experience I had not expected to have at this moment in my life) 

Then there is the Internet, friends who know someone, and useless advice I got. 

I went into the surgery unsure of my decision. It felt rushed and wrong. I didn't  want cadaver bone packed into my jaw. There was an option uncovered by insurance to add a growth material to the cadaver bone, I joked that I wanted to wait until we had the stem cell technology to regrow bone and had saved the babies cord blood at The University if that would help. It didn't. My jaw was sliced open on both the top and bottom and packed with hundreds of bone fragments. 

Since I had enough prescriptions the doctor didn't feel the need to talk about how to take pain medicine after surgery. 

The visit was short so I didn't feel the need to tell the surgeon my complete medical history. I haven't even shared it on this blog. I like to forget large chunks of it, I feel better in the mornings. 

Previously I had a longer consult with someone else in the practice who had seen patients with fibromyalgia and migraines who recovered well from the grafts and dental implants. 

I didn't fare as well. 

The implant in my upper right jaw triggered a nerve pain throughout my face. After the surgery it felt as though pain was radiating throughout my entire face, the delicate bones of my face ached and the soft tissue covering them where in spasm. Each morning was resigned to agony to open my eyes. For three weeks I needed to take medication to see through the pain and even then was only barely human. Both jaws hurt (and still do) from old TMJ on one side and a new case on the other. 

The pain was miserable but the loneliness was worse. It made sense to my neurologist that the pain would be a result of the bone graft. She expected a longer surgical and general recovery from someone with my medical history, and was surprised I done the procedure in the first place. While to her I admitted that I was shocked and appalled at how much pain the routine procedure had triggered, I began to play it down or avoid others. 

My daughter was getting ready for the National Chapionships for her favorite activity and instead of helping her prepare I was barely able to stay awake. For a few days my husband could excuse me as having dental surgery, but as one week turned to two and a third, I was embarrassed to have the other parents know how sick I am. In this group of triathlon running super moms, who work full time, (I have seen them high functioning with a cold that would put me in bed) I already feel like a weak slacker. Somehow I didn't want to know how they would respond knowing I was taken out for a month by an operation that elderly relations recover from in a few days (reportedly, several times, in a not helpful way as I suffered through my side effects.)

The intense and debilitating pain, combined with the effects of narcotic pain medicine made parenting through July nearly impossible. My husband used some medical leave to stay home in the days immediately following my surgery and my older daughter helped with the toddler. 

On my porch, calling family and oldest friends to update on my latest disaster the sympathy was hard to come by, this was a routine procedure and I had no explanation for my extreme response to it. In my neurologists office, my symptoms and complaints were received with a nod and no surprise, they seemed an obvious effect for someone with my collection of syndromes. I joked that if the research finally proves that the pain receptors of people like me are over-reactive, I will smile and nod. Those who love me most don't understand the disease I have and believe me to be malingering. 

So as I struggled through these complications, I didn't and couldn't reach out to the nascent community we have built in our new home. I knew they would not be able to understand that anyone could be so devastated by a routine procedure that by the follow-up appeared to have gone well. 

After years of living with this chronic pain I have come to find that it is something that can't be shared with friends and community without risking a kind of illness fatigue. People are willing to help out and make room for the occassional crisis, but when every week brings a different problem, you become the burden only family can bear. I joked to my daughter that I didn't want to talk about it or call anyone and ask for help because it made it too much work to be my friend. 

The bone graft drama is behind me and today I am updating the blog on the first day of school. 

I lost the summer to unforeseen complications and the blur of time passing too quickly. The next step for my teeth is reccommended dental implants. If any reader has had them and would like to inform my decision with a first hand account, I am grateful. 

That my girls are thriving and had a full summer despite my suffering, I am truly blessed. I hope you are as well.


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