Birthday

I go to the headache center in Philadephia. KG is with me. The appointment takes 3 hours and the waiting room is packed when we get there. It reminds me of being in Los Angeles and every appointment was overcrowded and impersonal. The receptionists can barely be bothered with us. I am given a psychological test with 338 questions...it takes me an hour to fill out. I will have to send a reimbursement form into my insurance for this. We are taken in by a nurse who does an intake interview with me, and by the time we see the doctor have been there 2 1/2 hours. The doctor is nice enough, but when I ask him if migraines can be caused by food intolerances, he says, "no, a lot of people think that but that doesn't really happen." WHAT? He suggests magnesium (this was also suggested to me for muscle aches) as a preventative measure and then prescribes Zomig nasal spray for the migraines. This is supposed to be THE headache center and I was hoping for way more information and answers. KG and I are not impressed with this experience.

I see Dr. S., and my white blood cell count has gone down even further to a 2.2, and my ANA level is up again. My Mom is with me and he tells us he is concerned enough with this that I must see a hematologist. He also backtracks AGAIN, and tells us he would like me to see a rheumatologist and an infectious disease doc. Oh my goodness, I could just scream or cry. This time last year I saw both of these docs, and my journey began. Both the infectious disease doc I saw and the many rheumatologists were not supportive and made me feel frustrated. In fact, the infectious disease doc he recommends to us is the same doc who was so dismissive of me last year. We tell Dr. S. that we do not want to go back to these doctors right now. We decide that I will see a hematologist and depending on that assessment, will move forward from there either treating me with more antibiotics or not. I am so scared that the doc who has been treating me for lyme disease for 7 months is now bactracking and making me question what is wrong with me. I just want to get better...and antibiotics were making me so. I believe I have lyme disease, all of my symptoms point in that direction. But I am being told again that these symptoms can also be indicative of lupus. I realize that I am officially in the "lyme black hole," not sure if I have an inflammatory illness, or if I have inflammation because of lyme disease. This happens to so many people, and once I was on antibiotics I didn't think it was going to happen to me. Now here I am.

Today is my birthday. What a difference one year can make in a life. Last year on this day I went to work and then to acting class. I was looking forward to my birthday party with all of my friends in Los Angeles and I was rehearsing a play I was very excited about performing. One week later I was in the hospital. I realize that life is fragile, and that the things I thought were important turn out to not matter at all.

Los Angeles Heather calls to wish me a happy birthday. She tells me she is proud of me for the person I have chosen to be in illness, that I am not a victim. I need to hear this, because I constantly feel like I could be more proactive and more positive.

Despite having pain in my body and feeling like I am no closer to an answer than last year, I am grateful for so many things; the support and love of my family and friends, that KG, an amazing man, has come into my life, and for being home. My hope this year is that I will get better and get my life back. But I realize that my life will never be the same after this journey, and maybe that's actually a good thing.

More doctors to see - June 2009

I have my period.  Joy.  The third day, as before, is torture.  I am irritable, tired, and have a bad tension headache.  Although for once my muscles are not inflamed.  I have to take Fioricet for the headaches.  I go see another rheumatologist, Dr. A. (the sixth doc I’ve seen).  He looks like Billy Bob Thornton.  I want another opinion after seeing Dr. B here in Philly.  Dr. A. does a new patient interview with me and a physical exam.  I tell him how tired I’ve been, depressed, etc.  He is concerned with my suicidal thoughts and lack of sleep. He doesn’t think I have lupus, but that I have fibro and need to see a therapist(!), need Zoloft and a sleep study.   I feel that I have been heard, but when I mention the possibility of a hormonal imbalance I am dismissed.  Literally.  He wraps up the session and leaves.  I suddenly feel like it’s 1950 and I am the “little lady” with her “female issues.”  Despite my resistance I finally succumb to the Zoloft and take it for the first time.  I cry when I swallow it b/c I feel like my mind is already grasping at sanity and this feels like I have been defeated by whatever illness is taking over in my brain.  It makes my hands shake and heart race. 

I make an appt. with endocrinologist/gynecologist, Dr. K. (the seventh doc I have seen thus far).  She is fantastic.  She spends more than an hour with me and my sister Tammy, who is with me.  She has insightful questions and really listens to me.   She gives me the first encouraging words I have heard and tells me this is the worst it’s going to get.  She tells me I am going to have to accept that whatever is wrong with me I will need to take care of myself and give it at least a year to recover.  She decides to run tests for cortisol, glucose/insulin, hormones and an internal to check the cyst I had.  I have some hope for the first time in a long time.

I meet with a therapist, Dr. M.  (doctor #8) I have found her through my insurance.  She seems nice enough, and when she asks me why I am there I explain that I’ve been sick and am going through a serious transition.  That my being sick is forcing me to see my life in a different way and that I may not necessarily be able to pursue my acting career in the way I wanted.  Also, that I am 40 and had to move home with my parents while I get better.  I see her only one more time, b/c the 2^nd time we meet she tells me I “look fine.” 

I see Dr. B again (the first Philly rheumy) and his receptionist is cranky to me again.  I try to be sympathetic that she is busy, but c’mon lady.  Dr. B. has just flown in the night before from a conference overseas.  He seems flustered, doesn’t remember me, and hasn’t looked at my test results.  When I ask him about them, he says, “oh yes, let me go find them.”  Everything that was done for him, including the MRI, is normal.  My ANA is still elevated, but less so than it was in April.  He says I have UCTD, undifferentiated connective tissue disease.  Whatever the f that is. He says, “is it life-threatening?  No.  Will it be an inconvenience? Yes.”  I do not find this helpful.  He insists I have lupus and that I have a butterfly rash on my face (I don’t) and that I am probably photosensitive (even though I am sitting in front of him with a tan).  He tells me to stay on all of the medicine I am on. My Mom tells him I have always had a reddish face, and that there is no butterfly rash, but he is not hearing her.   We decide as we are leaving that we will never go back to him again. 

I do a sleep study at the hospital.  They tell me I am not sleeping.   Very helpful.