musings on claustrophobia…

I haven’t written in a while because I didn’t have much to say. I know it is said  that if you just start writing, the words will come, but I wasn’t motivated enough. As it happens, today I’ve been thinking about claustrophobia and thought it was a good topic to write about.

I have a special gift, and that is that despite most things that life has thrown at me, I still see the world as a mostly sunny place. Things just don’t get me down normally. Some exceptions to this are relationship problems which I really take to heart, morning sickness (which was so bad I wanted to die) and sarcoidosis. I first truly understood depression with sarcoidosis. Mine affects my nervous system, and depression happened to go along with that. I didn’t care if life was ending for me. I didn’t feel like getting out of bed in the morning-saw no purpose. Fortunately, in a strange way, the sarcoidosis also caused neuropathy which prompted my doctor to prescribe an antidepressant for the neuropathic pain. About two weeks later I was back to my old personality-happy with a growing list of things I wanted to accomplish. That medication has been a dream, so much so that I hope to never have to go off of it! And it seriously helped the pain too.

But today is a bit different. I’m on day 3 of my 5 day infusion of IVIG for the neurosarcoidosis. It’s supposed to prevent the progression of the neurologic stuff like the neuropathy, POTS syndrome and the other autonomic issues like a basically nonfunctioning GI tract. I’m up to 5 medications per day that keep the food moving south and prevent that horrible day when I threw up my entire GI tract for no particular reason. (That was another day that I just wanted to die…). That episode was so debilitating that I couldn’t move from a prone position in bed. My husband who’s a nurse never saw anything like it. Vomiting that wouldn’t stop. So I do anything in my power to prevent that from happening again, taking whatever is prescribed. The medications help, but the condition keeps worsening. After much testing, I found out that the lower part of my intestines do not work. They do not propel the food out. This, over time, has caused me  to have an inflated belly most of the time. I look about 5 months pregnant when I’m hungry and can barely breathe after a good meal. My primary doctor has been trying to get me to see a motility specialist, but that clinic has not taken new patients for the last year (?!). Despite the 5 medications, over the last few weeks, my belly has continued to grow to the point of actually feeling a bit claustrophobic. So I stopped eating meat which is tough to digest. But even my morning coffee leaves me huge! I cannot run anymore, as running just saps my energy. Running used to be a great internal regulator for me. Walking does nothing and I’m starting to  feel trapped in this nonfunctioning body.

I was first diagnosed with Sarcoidosis one day when I woke up with a very swollen face. I have angular features normally, but looked kind of like a pumpkin that morning. I waited about 5 days for the swelling to dissipate but it didn’t. It seemed very pronounced around my eyes, so I visited the ophthalmologist. He diagnosed it as blepharitis and gave me an antibiotic cream with instructions to rub it around my eyes daily. When I did that, lo and behold, I felt something hard like a tire under my right lower eyelid. Back I went, and the ophthalmologist sent me upstairs to the orbital surgeon who was pretty sure I had lymphoma. He biopsied the mass, and the pathology showed granulomas-pretty diagnostic of sarcoidosis. But that biopsy seemed to make the mass angry. It seemed to  grow by the minute. I became terrified, felt very claustrophobic, and somehow got an appointment late Friday afternoon, begging for steroids to control the growth. Magically, within two days, the tumor melted and I experienced great relief!

I’ve also had difficulty with the MRI machine. No matter what they tried, my body would shake like a leaf. I tried to control it logically but that didn’t help. I eventually needed medication before the test. But after numerous MRIs  in the last few years, I finally successfully got one without premedication.  The secret is to cover my eyes and not open them throughout the test. I ask the technician to place a towel over my eyes and that works well.

I also once panicked in an elevator that got stuck in another country. I was with my then 2 year old son and became terrified when the lights and the air conditioning went out. I was not proud of myself then, because normally I think of my children first. However then I just panicked, banging on the door with thoughts of “I’m not in America; nobody will save us.” Thankfully, everything came back on and all was well. Definitely not proud of that. Fortunately, my son does not have problems with elevators, nor does he remember the incident.

I guess claustrophobia is an adaptive mechanism (maybe part of the “fight or flight” reaction) that we have in the presence of danger. But with Sarcoidosis, I can’t escape my body. I’m trying to learn to live with the disease and distract myself with enjoyable things. I’m trying to let people take care of me more. I’m trying to accept the fact that I can’t do many things now including being a proper mother. My children are thankfully old enough to do pretty much anything by themselves except drive to school, and I can still manage that. I guess illness is a way of accepting how little power we actually have in life. Maybe it’s a way of forcing us to trust in a higher power.


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