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.
Thursday, March 25, 2010
Saturday, March 20, 2010
Alone in the Night
Just two days after my amazing Michael Buble experience, I see Dr. S., and more blood is taken. We are checking my white blood cell count again and ANA levels. He mentions sending me to a rheumatologist and a hematologist again b/c of how low my white blood cell count and neutrophils (http://en.wikipedia.org/wiki/Neutrophil_granulocyte) are. I tell him I am so frustrated b/c it was exactly a year ago that this whole process started for me and I saw about 4 rheumatologists before I got to him.
It is 6:30 am and I have been awake the entire night very sick. I started getting a headache when I fell asleep, and so took my Fioricet and 1/2 a muscle relaxer. This served to make me extremely nauseous and sick. The headache turns out to be a classic, throbbing, migraine, so the Fioricet does nothing for it. I spend the entire night in an enormous amount of pain. This was the cycle I went through each month last year before I ended up in the hospital. It is like my body is toxic again, or reacting to something I ate. It is also the last day of my period, so I know now that this is effecting me greatly. I used to think this cycle was a flu or something, but now I know better. Ironically, I was at Dr. S earlier this day, and told him these migraines weren't happening anymore.
When I am alone in the middle of the night and my body is rebelling against me I start to lose my positive attitude. I realize how alone I am in the battle in my body. Nobody can get inside there at 3 am and fix what is raging inside of me. I want to give up. I am so tired of feeling like this. It is a roller coaster. One day/week I feel good, then I get sick again.
My analogy is this...imagine there is something wrong with your car and you take it into the mechanic. He says, "well, there's something wrong with it, but I don't know what. I'll give you some oil and you put it in there when things seem bad." So you do that and you follow the mechanic's instructions. You assume your car will run efficiently now. So you make plans to go to work but on a random day the car just doesn't run. Now you can't get to work, and you know it'll take about 2-3 days for the car to right itself so it can function. You then make plans for dinner with friends. You have every intention of going. The day of the dinner the car breaks down again and needs to rest, and there is nothing you can do about it so you must cancel your plans. This is what it is like to live with lyme disease/chronic illness etc.
I am questioning myself now. DO I have lupus? Do I have fibromyalgia? Do I have lyme disease? I am so confused, and FRUSTRATED.
It is light outside now. I haven't slept the entire night. This is very bad for my immune system and robbing my body of the chance to heal. I read back over my posts and I seem erratic. One day I am at peace and positive, the next I am frustrated and hopeless. I realize this is lyme disease.
It is 6:30 am and I have been awake the entire night very sick. I started getting a headache when I fell asleep, and so took my Fioricet and 1/2 a muscle relaxer. This served to make me extremely nauseous and sick. The headache turns out to be a classic, throbbing, migraine, so the Fioricet does nothing for it. I spend the entire night in an enormous amount of pain. This was the cycle I went through each month last year before I ended up in the hospital. It is like my body is toxic again, or reacting to something I ate. It is also the last day of my period, so I know now that this is effecting me greatly. I used to think this cycle was a flu or something, but now I know better. Ironically, I was at Dr. S earlier this day, and told him these migraines weren't happening anymore.
When I am alone in the middle of the night and my body is rebelling against me I start to lose my positive attitude. I realize how alone I am in the battle in my body. Nobody can get inside there at 3 am and fix what is raging inside of me. I want to give up. I am so tired of feeling like this. It is a roller coaster. One day/week I feel good, then I get sick again.
My analogy is this...imagine there is something wrong with your car and you take it into the mechanic. He says, "well, there's something wrong with it, but I don't know what. I'll give you some oil and you put it in there when things seem bad." So you do that and you follow the mechanic's instructions. You assume your car will run efficiently now. So you make plans to go to work but on a random day the car just doesn't run. Now you can't get to work, and you know it'll take about 2-3 days for the car to right itself so it can function. You then make plans for dinner with friends. You have every intention of going. The day of the dinner the car breaks down again and needs to rest, and there is nothing you can do about it so you must cancel your plans. This is what it is like to live with lyme disease/chronic illness etc.
I am questioning myself now. DO I have lupus? Do I have fibromyalgia? Do I have lyme disease? I am so confused, and FRUSTRATED.
It is light outside now. I haven't slept the entire night. This is very bad for my immune system and robbing my body of the chance to heal. I read back over my posts and I seem erratic. One day I am at peace and positive, the next I am frustrated and hopeless. I realize this is lyme disease.
Thursday, March 18, 2010
Home
I remember driving my car in Los Angeles, stuck in traffic somewhere, feeling so sick I thought I wasn't going to make it. I had a Michael Buble CD in my car and this song, "Home," would come on and I would cry every time, b/c I knew in my soul that I just needed to go home. Every part of me needed to be home to be healed. I felt so lonely. I was sick and didn't know it at the time, I had no man in my life, I was anxious and scared, I missed my family, and my body & mind were betraying me.
I see Michael Buble in concert and he is fantastic. KG takes me to see him for my birthday. He does what you expect of an entertainer; he really brings it ON, and he is funny, self deprecating and so incredibly talented. He lifts the audience to another place, if only for a couple of hours, and leaves us feeling like we have been a part of something special. He came out into the audience (KG and I have seats on the floor) and he is about 30 feet from us. He stands on a small stage in the center of the floor and sings an acoustic version of "Home." On this birthday that I didn't want to celebrate I find myself standing there, watching Michael Buble right in front of me, singing that song that meant so much to me when Los Angeles felt so hard. I AM home, KG is with me, and I am healing.
Friday, March 12, 2010
March, 2010
I feel like I am in the movie Groundhog Day, and every day feels like a repeat of the last. I have low white blood cell counts, I am off of doxycycline, I might have to go back on it, I have symptoms that come & go. It feels like I have been on this ride forever.
My birthday is in 2 weeks. This time last year I got sick the day after my birthday and I haven't been the same since. KG asks me what I want to do for my b'day this year and I tell him "nothing," because it is a painful reminder of the year that feels lost to me. My sister, however, reminds me that it should be a celebration of life, and how much better I have gotten. She is right. I am grateful that I had the means to come home, to take the time to heal, that I found a doctor who believed me and treated me despite negative tests, that I am not terrified of my period every month now.
In this 2nd round of doxycycline I have now been off of it for 3 weeks. I feel relatively good. The tension headaches are ceasing to be as intense, I am sure b/c I am off of the doxy. My sleep pattern is a little interrupted again, so that's something to be concerned about. My white blood count is STILL very low at a 2.4. Dr. S. will take blood yet again in about a week, and we will see if being off of the doxy for a month will bring it back up.
I go to the Jefferson Headache clinic next week. Also, I have been taking a multi-vitamin and plan to begin adding more supplements etc. New Jersey Heather has been amazing and sent me a list of supplements and KG did his own research looking for ways to boost my immune system. I am still pretty much off of sugar, it tastes way too sweet to me now. It is bad to eat a lot of sugar with lyme disease and only helps yeast and spirochetes grow.
A new friend, S, also a lyme patient, recommends something called trigger point injections for the headaches. S had to come home from California like me, and is living at home. She says these have helped her enormously. I am looking into this as well as acupuncture. The lyme community is supportive and educated b/c they have to be.
I read the book "What is the What?" by Dave Eggers with Valentino Achak Deng (www.valentinoachakdeng.org/preface.php). It is about a Sudanese man (Valentino) who is one of the Lost Boys...they were thousands of young boys who walked thousands of miles from Southern Sudan into Ethiopia to escape the war that ravaged their home. They were then sent to Kakuma, a refugee camp in Kenya, and many are now here in the United States. Valentino's journey and the death, chaos, and tragedies he saw in his young life devastates me. I realize how relative pain and suffering is; I have known comfort in a way he and these young boys never had the luxury of knowing and so getting sick in the way I did rocked my world. And yet, despite his experiences, there is a feeling of hope at the end of the novel; for being alive, for life, for the chance to love. I am reminded to embrace all of the good that I am fortunate enough to have around me and to remember that even in sickness there are things to be grateful for.
My birthday is in 2 weeks. This time last year I got sick the day after my birthday and I haven't been the same since. KG asks me what I want to do for my b'day this year and I tell him "nothing," because it is a painful reminder of the year that feels lost to me. My sister, however, reminds me that it should be a celebration of life, and how much better I have gotten. She is right. I am grateful that I had the means to come home, to take the time to heal, that I found a doctor who believed me and treated me despite negative tests, that I am not terrified of my period every month now.
In this 2nd round of doxycycline I have now been off of it for 3 weeks. I feel relatively good. The tension headaches are ceasing to be as intense, I am sure b/c I am off of the doxy. My sleep pattern is a little interrupted again, so that's something to be concerned about. My white blood count is STILL very low at a 2.4. Dr. S. will take blood yet again in about a week, and we will see if being off of the doxy for a month will bring it back up.
I go to the Jefferson Headache clinic next week. Also, I have been taking a multi-vitamin and plan to begin adding more supplements etc. New Jersey Heather has been amazing and sent me a list of supplements and KG did his own research looking for ways to boost my immune system. I am still pretty much off of sugar, it tastes way too sweet to me now. It is bad to eat a lot of sugar with lyme disease and only helps yeast and spirochetes grow.
A new friend, S, also a lyme patient, recommends something called trigger point injections for the headaches. S had to come home from California like me, and is living at home. She says these have helped her enormously. I am looking into this as well as acupuncture. The lyme community is supportive and educated b/c they have to be.
I read the book "What is the What?" by Dave Eggers with Valentino Achak Deng (www.valentinoachakdeng.org/preface.php). It is about a Sudanese man (Valentino) who is one of the Lost Boys...they were thousands of young boys who walked thousands of miles from Southern Sudan into Ethiopia to escape the war that ravaged their home. They were then sent to Kakuma, a refugee camp in Kenya, and many are now here in the United States. Valentino's journey and the death, chaos, and tragedies he saw in his young life devastates me. I realize how relative pain and suffering is; I have known comfort in a way he and these young boys never had the luxury of knowing and so getting sick in the way I did rocked my world. And yet, despite his experiences, there is a feeling of hope at the end of the novel; for being alive, for life, for the chance to love. I am reminded to embrace all of the good that I am fortunate enough to have around me and to remember that even in sickness there are things to be grateful for.
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