Sunday, October 25, 2009

Bell's Palsy - April 2009

The first rheumatologist’s office I get on the phone treat me very rudely and then tell me they can see me in about 2 weeks.  I am so tired and sick I just start crying.  I am having a hard time comprehending google, let alone phone numbers and trying to research and contact various doctor’s offices.  My roommate, Samantha, finds another doc for me and they can see me right away.  She drives me to see Dr. M., in Beverly Hills, b/c I am so sick I can’t operate a car.  He does blood tests and an EKG.  He thinks I have fibromyalgia and maybe lupus.  He puts me on medicine to stop the inflammation.  I am given prescriptions for Skelaxin, Lyrica, Fioricet & Limbrel and I make another trip to the Rite Aid pharmacy.  I am completely out of it and my body doesn’t feel normal at all.  Three days later I wake up and the left side of my face feels funny.  I can’t feel my lips and my eye won’t close.  Samantha thinks I’ve had a stroke.  By the end of the day it has gotten much worse, and I can’t feel the left side of my face at all.  We call Dr. M, and he says, “this is very scary.”  This does not encourage me.  He tells me I need to see a neurologist immediately and makes an appt for me there the following day.  Samantha does some research and finds it could be something called Bell’s Palsy, which can come from lyme disease, a brain tumor or even a stroke.   We know I don’t have a tumor b/c I just had a cat scan at the hospital.  The neurologist, Dr. O., confirms it is Bell’s Palsy and takes me off all of the other medicine.  There is no discussion of Lyme disease.   I am put on Prednisone (steroid), Valtrax (anti-viral) and Lunesta (for sleeping).   I go back to the Rite Aid pharmacy.  The face paralysis lasts 10 days.  I can’t feel my tongue, my cheek or my eye.  I keep biting the inside of my mouth when I chew.  I can’t really talk.  I tape my eye shut when I go to bed at night, otherwise that one eye will remain open when I sleep.   I tell my friends I am working on my pirate impressions and my roommate buys me a black, pirate eye patch. 

I speak to Heather’s friend M., who had lyme disease for 13 years until he was properly diagnosed.  Everything he tells me about his experience is very familiar with what is happening to me.  It makes sense to me that I could have Lyme disease.  My parents and friends on the East Coast who have experienced it think too that it could be lyme.  At this point, I am on the phone every day with my Mom and sisters.  My parents debate whether they or my sisters need to come to L.A. to get me and help me, but because I will be leaving my job and can’t work now, we decide they should save the money in case I need help later for medical/doctor’s bills.   The company where I was working for my day job is incredibly kind and do everything they can to help.  My boss, K., is very understanding and just wants to see me get better.  I am able to apply for disability.  I am so grateful because having money stress on top of how sick I am is too much to handle. 

I make an appt. with a gynecologist, Dr. C., and she tells me I have a cyst on my left ovary.  She says it will go away though in about 2 cycles and I shouldn’t worry about it.  We talk about estrogen and progesterone but she doesn’t think that is a solution and that maybe going on the pill would help resolve “some of the issues” I’m having. She recommends I try the Nuva-Ring, although I will need to wait to do that until I am off all of the other medicine. 

I go back to Dr. M., the rheumatologist, and he tells me I have a very high ANA level, (indicator for Lupus), and that he feels I have a “lupus like” autoimmune disorder with underlying fibromyalgia.  Friends and family have asked me about lyme disease because of the Bell’s Palsy, so I ask Dr. M to do a lyme test which he does.  He writes me prescriptions for these drugs; Plaquenil (anti-malarial, used for lupus), Arthrotec (anti-inflammatory), Lunesta (sleeping) and Lyrica (fibromyalgia).  I am totally depressed and my head is reeling, trying to accept the fact that I could potentially have to be on some of this medicine for a very long time to “manage” the pain.  Samantha takes me back to the Rite Aid pharmacy which I equate with a fluorescent lit, muzak, trying not to vomit while I stand in line hell, but the pharmacists smile at me now and say hello.  The Lyme test comes back negative which I only find out because I call Dr. M’s office over and over and wait on hold for 20 minutes each time.  I find out later that steroids (like Prednisone which I was on for the Bell’s Palsy) can give a lyme false negative.  There is no further discussion of lyme disease.  

During all of this Samantha and I are in the middle of packing out our apartment.  I am moving home to Philly and she is moving to London.  Samantha somehow finds the strength and energy to not only take care of and worry about me, but to wrap out her entire life before she leaves. Other friends rally around us and like angels sent from above they run errands, pack us up and support us while we try to handle the stress and worry.  I am humbled by their willingness to jump in and take care of us.   I am also learning that despite my fierce need to be independent, giving over to the strength and kindness of others is healing.   Heather packs up my entire room.   I ask her how I am going to fit things into my 2 suitcases, and she says “we can always ship the extra stuff in a box.”  Five minutes later I say to her, “yeah, but how am I going to fit everything?”  She says, “we can ship it.”  Another five minutes later and I say, “how are we going to fit everything?”  She patiently says, “I have an idea, we can ship it.”  We laugh hysterically but somewhat somberly as we realize my short-term memory is really suffering.  My friend Keith, who I haven’t seen in some time, steps in like a white knight and calls or texts me every day to make sure I am okay.  He gently hugs me and gives me a strong shoulder to put my head on, something I didn’t even know I needed.  Despite the fog I am in, I have to organize all of my medical paperwork and coordinate my insurance and disability.   Heather goes with me to Staples to fax and mail everything before I leave LA.   She has to hold my purse because it is hurting my muscles to do so.   Standing at Staples takes every ounce of energy that is left in my body.  We laugh because although I am the sick one, the copier instructions are confusing and I end up figuring it out.  At this point I have had my period now for 26 days, and my body is so out of whack I don’t know which way is up.  Heather and Samantha drive me everywhere because I am obviously too confused and dizzy to drive myself.  Finally, Samantha and I finish packing and fly out of LA.   She ends up lugging all of my bags through the airport along with hers as my muscles are so weak I can’t handle my suitcases.  

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