Tuesday, October 27, 2009
At the end of October I am feeling more like myself every day. I still have some muscle twitches here and there. I go for an hour walk and I sweat and stretch. This is a major accomplishment. Of course, I take an hour nap later but, hey, baby steps. I attend the Lyme Action Program in D.C. I meet other lyme patients and I am amazed at their resilience, humor and incredible stories. I have lunch with a guy, R., and he tells me he has a barrel full of the medicines he has been prescribed over the years. I meet a mother who has twins who both have lyme, as does her husband!!! He is sitting next to her with an iv line in his arm. Everyone there, including the people who are running the program, all have first hand experiences with lyme. Some people have an entire family affected. I do not know how these people are functioning. Especially the Moms, some of whom are sick themselves, but who also have children with lyme to take care of. I cannot express what a tall order this is for them. Having been so sick myself and barely able to walk, I cannot imagine adding little children to take care of as well. I am in awe of these women.
I am getting more angry and feeling a sense of real urgency to become involved in this struggle. I learn more about the political debate that surrounds lyme disease, which needs to be discussed in another post b/c of how complicated it is. Suffice to say, I have gotten a doozy of a disease. I can't just get sick, I have to get sick with something that has serious debate surrounding it. I will do everything I can to educate myself about the issues b/c it is making me so angry. Especially what is happening to children and teenagers. At this conference I learn some valuable information about spreading the "lyme" word. I meet some amazing people. I am, once again, humbled and inspired. I decide I will organize a lyme support group in my area, b/c one doesn't exist.
I am hesitant to be too detailed about what transpired at the conference, and that is one of the creepiest things about lyme disease. Doctors names are whispered to each other, no one wants anyone to know who their LLMD is b/c if the wrong people find out that a doc is treating lyme patients in an "unorthodox" way he could have his license revoked or be brought under investigation. That's right, that is happening RIGHT now. Here is my analogy; imagine for a second that your child has cancer. She will get better with chemotherapy. However, the treatment the doctor KNOWS will make her better from his PRACTICAL EXPERIENCE with hundreds of kids just like her requires she do chemo for say, 4 months. But, the CDC (Center for Disease Control) and the IDSA (Infections Disease Society of America ), groups at the center of the lyme controversy, say that based on their guidelines their recommendations for this kind of cancer is that she should only require 2 months of treatment. Therefore, your insurance will only cover 2 months. Your daughter starts to get better at the end of month 2, and they end her treatment. By the 3rd month, she is deathly ill again, and b/c they didn't get all of the cancer, it is returning. Now, you have to pay out of pocket for the next 2 months, putting you thousands of dollars in the hole, or your daughter is going to continue to be VERY sick. This is what is happening to thousands of lyme patients RIGHT NOW. They require months of iv antibiotic treatment when they have chronic lyme disease. Oh wait, though. The IDSA and the CDC do not recognize that lyme is chronic or persistent. RIGHT. Just get on-line on any lyme web-site, or actually TALK to the people who are suffering and you will see it is most certainly chronic. I challenge any one of the people who create this policy, legislation, criteria, or testing guidelines to keep saying that when they or someone they love gets lyme disease and 14 or 28 days of iv abx (antibiotics) doesn't cut it. I would like to see them feeling better and then have their medicine taken away from them and see them crawling on the floor on their knees in so much pain they want to kill themselves. THEN they can tell me chronic lyme doesn't exist! I have also heard it said by these same people, "if you are sick after 14 or 28 days of antibiotics then it's not lyme." It is so frustrating when I am experiencing this for myself and meeting so many who continue to be sick after the initial "standard course" of antibiotics.
As October ends I am feeling good. I still can't really taste anything, but other than that I can't believe how normal my body continues to feel every day. I continue to sleep through the nights. I went for a walk today and actually RAN a litte! I see Dr. Saviour and he is happy with the progress. I will be off of the doxycyline in 6 days. I am scared for November b/c I know how much pain I was in and since I have been feeling so good I am just terrified that the pain will come back. But Dr. Saviour says, "look, I'm your Dr. now and we will never let it get that bad again. As soon as you have any symptoms, IF you have any, we will figure out our next step." I am just so worried that we weren't aggressive enough from the start. But the next few weeks will tell. I am on my way to NYC for Halloween and it is going to feel really good to just be a normal person if even for one night!
These are the medicines I've been on at various times since April of 2009 before getting my Lyme diagnosis. After learning more about Lyme disease and speaking to other "lymies," I realize I got off easy. I have met people who literally have boxes and boxes of the medicines they have been given to treat their "symptoms." What is hard for lymies is that sometimes all of these medicines make us more sick in other ways. And really if we just got the proper diagnosis right away and the proper antibiotics for as long as necessary, we would get better.
Sunday, October 25, 2009
I feel slightly toxic again at the beginning of October. I realize that it has been exactly 1 month since I was put on doxy, and think maybe the symptoms are cycling again. That would make sense. I still have the taste perversion but overall I am actually feeling good. I keep waking at 4 and 5 am again, but I think I have been on Lunesta too long and while it puts me to sleep it doesn’t keep me asleep and must be out of my system after about 5 hours or so. I take my last dose of Plaquenil, which I am really happy about. On the first Saturday of the month I am extremely nauseous and can barely eat that day. I skip a dose of doxy, as my stomach just can’t handle it. I go off of the Lunesta and Lyrica and actually fall asleep. I wake up at 4:30 am but am thrilled I actually fell asleep without a sleep aid. I still have some aching in my neck and it is stiff sometimes and I get a tension headache, but it is so much less intense than in the beginning of the year when I was really sick. I check in with Dr. Saviour and as usual we have a productive appointment. He answers all of my questions and concerns. I am worried that my antibiotic dose is too low, that I will build up a resistance to the antibiotics, that we are not addressing co-infections, that when I go off of the doxy I will get even more sick than in the beginning of the year. He advises I stay on the doxy and my ½ dose of Zoloft until the end of the month and then I have to have weaned myself off of everything. He wants to see how my body reacts. I am terrified for this. I have been feeling like a normal person. Maybe not every day, but I have moments of perfection where my body feels good and I can stretch and there is no pain. It is a miracle. I lie in bed in the morning and instead of being curled into the fetal position, the only position that felt comfortable for so long, I can lie on my back and stretch, and take in the morning sun and silence. I have even been able to go for long, slow walks and get a stretch in afterwards without pain or exhaustion. Towards month’s end I am having more days of feeling good, and I am able to go for a walk every other day. I still have this horrible taste perversion and no appetite because of it. Although I have to eat so I can take the doxy!
I have been on the Doxycyline for 2 days and am on Day 3 of my period. I get really sick. I have a wicked headache. I request a prescription for diflucan, b/c I know I will get a yeast infection from the antibiotics. My muscles and tender points are aching, the same places that hurt so much in the beginning of the year when I was so sick. I have taken 2 Fioricet, which were prescribed for me for this very headache, and they haven’t even touched it. I am sick for 3 days, but it is less than when I was sick before. I am alternating b/t chills and sweating, my face feels hot and I am physically uncomfortable. I still want to lie down all of the time, and particularly in the afternoon, around 4, I completely run out of steam. One positive thing is that already my heart has stopped racing. I can’t believe it, it has been almost a year since my body felt calm. I feel good for a day or two and then feel sick again, like I am cycling with symptoms. I am driving home from my sister’s one night on the highway, going 60 mph, and I have a full-blown panic attack. I am terrified. I can’t feel my hands on the steering wheel, and I feel like I am out of my body. All of the lights start to blur and I can’t breathe and I feel like I am in a tunnel. I am afraid I will crash, but more importantly that I will hurt someone else. I tell myself to breathe, and that I will be ok. I open the car windows and the cool air helps to calm my body down. I notice that my muscles are also twitching. I am struggling with sleep and I have a short fuse again. I find that the doxy makes me dizzy. I have a couple of days where I feel ok, relatively speaking and then about 2 weeks in to the doxy I sleep through an entire night. This hasn’t happened for almost a year. I wake at 9:30 am and can’t believe that it is not 4:00 AM. I feel like a human being.
I get my period, and although I feel slightly toxic, I don’t have a headache. I take diflucan for about 3 days and then notice that everything tastes terrible. I think it is either from the doxy, the diflucan or the combo of these with everything else I am still on. Water tastes metallic and food has no taste at all, in fact it is almost offensive to put in my mouth. I have cut out pretty much all sugar and only drink water and decaf green tea. I eat very simply now, it is the only way I can get food down. I’ve lost about 5 lbs, and I am not working out. My period arrives again, only 14 days after my last one. I assume all of the medicine in my body has completely screwed up my cycle. I am dreading day 3.
However, for the first time in a year, I have no toxicity, no headache and no muscle inflammation. I am almost afraid to believe it, b/c it feels so good. I go check in with Dr. Saviour and he is very happy with the progress. He is conservative though, and he says we need to be cautiously optimistic. Once again, he assuages my fears and spends time with me, never making me feel like my questions are not important. I feel taken care of and heard once again. My friend Barry comes to visit from L.A. and takes to calling me “Lymie.” That makes me laugh. I am owning it. Plus, when I forget I’ve already told him something, I tell him he needs to be nice b/c I am having a lyme fog. And if he isn’t, I will go into a lyme rage on him. Kind of like a lyme super hero. Each day I can see that I am feeling slightly better. The toxicity is leaving my body and I actually have a day here and there in which I have no pain in my body at all and I have another night or two in which I sleep through the entire night. The only residual symptom right now is this awful taste in my mouth. I have a day or two also in which I feel overpoweringly nauseated. At the end of the month I check in with Dr. Saviour again and he decides as I am doing so well I will do another 30 days of the doxy. He also wants me to wean myself off of the Lunesta and Lyrica. I am down to a ½ dose of Zoloft, so 50 mg to 25 mg. I am to be off of all of the medicine by the end of October. That scares me, b/c I am actually starting to feel a major difference in my body, and I don’t know if I can mentally handle getting so sick again. Also, at the end of the month my sister, Tammy, and I attend a local screening of the documentary “Under Our Skin,” directed by Andy Abrahams Wilson. This is a film about the devastating effect lyme disease has had on people. There are a few patients highlighted in the film. The one that hits home for me is a young woman named Mandy, http://www.underourskin.com/filmcharacters.html. They show a picture of her skydiving, something I have done, and also a shot of her in her front yard, bent over and unable to walk. It is eerily similar to how I felt when I was in my apartment in LA, at night, unable to stand up or sit down. I cry for the entire movie, as I see my own story played out over and over in the stories in front of me. I think mostly that I feel relieved and validated. Once again, I realize I am not crazy, and that I was right when my intuition told me something was poisoning me and taking over my body. I realize I have an illness that is just beginning to be understood and that as I get better, I will do everything in my power to help others. I do not want to see anyone go through what I have gone through.
I haven’t really slept for 5 nights. I am beyond exhausted. I am on all of this medicine, including Lunesta, but I am still waking up in the middle of the night and am unable to fall back to sleep. I went for a walk the other day and it wiped me out. I feel sick all over. I feel like I am losing my mind and that I will never get better. I try to nap and I can’t fall asleep. It is torture. I wake up one morning and my body keeps “revving,” in cycles. I have no idea now if the medicine I am on is making me sick or if it is the symptoms of what is going on. My back hurts horribly. I have read that 3 of the 4 medicines I am on have backaches as a side effect. So now I must decide if I can put up with the backaches or give up some of the medicine and risk the other symptoms coming back. I call Dr. A (my rheumy) and ask if he will please fill out my supplemental disability form for me. The receptionist tells me that they make it a policy not to do that. I ask to speak to the Dr. myself, but they say he will have to call me back. He does, but of course I miss the call and then can’t get him on the phone. I try this one more time. Then, I get a fax from his office. He has filled out the forms saying that I am capable of working. He has not even had a discussion with me since about a month ago, so is basing this on the fact that I had shown improvement since the beginning of the year. Clearly he has missed the part where I can’t remember things and how much it hurts to get out of bed still! I spend most of my time on-line researching everything I can find; Fibromyalgia, Lupus, MS, Celiac’s, Chronic Fatigue, Adrenal Fatigue, Hormones, Diabetes, Sjogren’s Syndrome, Lyme Disease. I am still not convinced it’s not lyme.
Heather sends me a chart so I can fill out all of the symptoms I have and cross reference them with lupus, fibromyalgia and lyme. With all of the research I am doing, we realize that b/c lyme disease can be a controversial diagnosis in terms of treatment length, perhaps we should just see what symptoms I have first. And forget about what the NAME of it is. If I have all of the lyme symptoms, and they are best treated with antibiotics, that is the first course of action I should be taking. And if the antibiotics don’t work, then I can reassess the managed pain route. Plus, there is no blood test for fibro and they are willing to give me a “clinical diagnosis” for that (meaning I will possibly be taking medicine forever!) so why not give me a clinical diagnosis for lyme? When I fill out the chart I have an alarmingly high number of symptoms that cross reference with lyme.
My friend, R., calls me from LA and tells me his father here in Philly has been diagnosed with lyme disease, including the facial paralysis, and that maybe I need to reconsider a lyme diagnosis. I go back to the internet, and my sister buys me Coping with Lyme Disease, an amazing and informative book by Denise Lang http://www.amazon.com/Coping-Lyme-Disease-Second-Practical/dp/0805047751. She reads the whole thing and then gives it to me. I underline ½ the book and again, I can’t believe the number of symptoms I am checking off. It is an eye opener and I get frustrated and angry that this could have been the answer all along. One chapter in particular, about Women and Lyme, shows me that it is common for women to experience increased symptom flares around their period. Screw all of these doctors who made me feel like I was crazy when I explained that keeps happening to me! I make an appt with a Dr. who is in a “tick area” in MD. Now doctor number 9 I think! He sees a lot of lyme. While he is attentive I find that I know more about co-infections than he does, and he seems confused by the differences b/t erhlichiosis and babesiosis. Not a good sign. I will not go back to him.
I join the Pennsylvania Lyme Yahoo Group, (each state has one) and ask for a recommendation to an LLMD (lyme literate md) in my area. Someone who I am forever grateful to sends me the name of a doctor near me. I will henceforth refer to him as Dr. S, (as in Saviour!). This is now doc #10. My first meeting with him I know I am in the right place b/c his receptionist is incredibly kind to me. My sister, Tammy, is with me. He spends almost 1½ hours with us. I don’t feel rushed or dismissed in any way. He does not make me feel like I am crazy for the ridiculous amount of symptoms I have. He verifies that yes, my tests could be negative and I could still have lyme. He decides to do full lyme tests as well as check my ANA again, amongst other tests. We decide against Igenex or MDL (known for more sensitive testing criteria) for now, and will see what the Quest tests say first. I am covered by my insurance for Quest, although my THREE other lyme tests went through Quest and were negative. But I trust this guy and am willing to go down this road with him. He answers every question I have from all of the research I have done, and is very knowledgeable about co-infections. I feel like for the first time in months I have been heard, and that I am not insane. I cry in his office out of relief this time, which makes him uncomfortable, which I think is kind of funny. I go back to see him the following week and my lyme test is still negative. He feels he can give me a clinical diagnosis based on his experience and my range of symptoms. I am given 200mg of doxycycline for 30 days. Although from my research I know this is a low dose, we decide we will start with this and see if we need to be more aggressive. He does not want to put me on a picc (peripherally inserted central catheter) line yet. Some chronic cases require iv antibiotics for long periods of time. I am learning through my research that treatment length/dosages are a hotly debated topic. Also, I read about the Jarisch-Herxheimer response. The Wikipedia definition of this is…when large quantities of toxins released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification. So, I will most likely experience a severe flare of symptoms while the bacteria are killed off. Let the games begin.
I do a follow up appointment with the endo/gyno, Dr. K., and she tells me all of my tests are NORMAL. My ultrasound is normal and the cyst on my left ovary is gone. There are no hormonal issues and I am not peri-menopausal, which I was concerned about. She recommends if I am still experiencing painful periods in the coming months I can try the pill. I am hopeful because we keep ruling out things that could be wrong, but I am also frustrated, because I am still not getting an answer as to why I am so sick and toxic during menstruation.
I do a follow up with Dr. A, who now says he believes I do NOT have lupus, which is a huge relief. He says I do have fibromyalgia. I tell him the Zoloft is definitely helping and that I feel better, relative to the beginning of the year. But I am not anywhere near well. He recommends I stay on all of the medicine too. I ask why I need to stay on Plaquenil when I do not have lupus, and he says, “good question, but you are feeling good and I don’t want to take you off of anything just yet.”
I get my period and the 1st and 2nd days I am incredibly sick again. I have a bad headache and I am sick all over. I am so frustrated with all of this. It hurts when I go to sleep at night and I cannot find a comfortable position. My neck and shoulders are swollen. I am still tired and when I take a shower I still have to lie down for about 20 minutes after because it exhausts me. I try to be grateful for having a family and friends who love me. Heather and Samantha check in with me all of the time from L.A. and London, and with my family make me feel like people are invested in my progress and my health. It makes me feel like I am not alone in this. Some days, however, the prolonged sleep deprivation and chronic pain catch up to me and I just cry. I forget what it feels like for my body to feel good. I miss working out. I miss going for a walk or run and feeling sweaty and stretching and feeling the endorphins and having that glow after a hard work out. I am humbled that I was so hard on my body before, always seeing the negative when I looked in the mirror and never measuring up to the images I see in magazines. Now I realize I was healthy, and that is all that matters. I had always thought I would run a marathon, and now I am finding it hard to go for a 10-minute walk. I read Lance Armstrong’s “It’s Not About the Bike.” I am inspired and feel like I seriously need to get over myself and stop whining about the pain.
I have noticed that I haven’t heard from a lot of my friends. Strangely, people I thought would step up to the plate have completely disappeared from my life. A guy I was seeing before I left LA hasn’t called, and yet people I was not that close to have shown up in ways I could never have anticipated. One such friend, P, has called and randomly emailed to check in with me. He has surprised me b/c we were not that close when I was in LA. There is something about small gestures like this that makes me have faith in people.
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 2nd 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.
I make it home by the skin of my teeth. The day after I arrive I wake up and my face is swollen, rashy, hot and itchy. My Mom starts organizing doctor’s visits for me. The first doc we go to see in Philly (fourth doc so far) is Dr. D, an internal medicine specialist and infectious disease doc. He comes highly recommended. He looks at my test results from LA and recommends I see a colleague of his, Dr. B., who I actually already have an appt with. Dr. D. runs tests including another lyme test. He is obviously brilliant, but is a bit dismissive. When I tell him my symptoms seem to “cycle,” he says in all his years of practice he has never heard of that with lyme disease. And when I mention the possibility of a hormonal connection, he completely shuts down.
I see his colleague a few days later, Dr. B, another rheumatologist (now doc number five). His receptionist is condescending and cranky with me, which sets the tone for all of my interactions with this doc. She is lucky I am so sick and all of the sass has gone out of me. Dr. B. tells me he knows there is something wrong with me and that he believes me (!), but he doesn’t know what it is. My Mom just looks at me when he says this and raises her eyebrow. He orders more blood tests, and an MRI.
I call Dr. D’s office (the infectious disease doc) and am told the Lyme tests are negative. I am still feeling sick…I am extremely uncomfortable in my body, my shoulders and back hurt, I am not sleeping still (despite the (Lunesta), I have abdominal pain, I am crying and irritable. My libido is completely gone. I can’t even think about someone touching me. It takes everything I have to just sit on the couch and watch TV. The fatigue lives in my very cells and muscles. When I wake up in the morning I dread getting out of bed becaue I know how much it is going to hurt. I fantasize about stepping outside of my body and getting relief from it even for a second. I try to go for a walk, because everything I have read about fibromyalgia says that I should try to do so. I get about 5 minutes in and want to lie down in the middle of the street. Maybe someone will run over me. I want to nap for the next 3 months. It is dawning on me that as a 40-year-old woman with lupus and/or fibromyalgia, children could be out of the question. It was always something I thought I could do in the future after I became a successful actress.
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.
Saturday, October 24, 2009
I am relatively symptom free again in the beginning of March '09, except for the depression and sleep deprivation. Then, my 40th birthday rolls around and I have a big party. The day of the party I work out, and drink some alcohol at the party. I am also up until about 3 am that night. The day after the party I am seriously sick. I think, "ok, I'm hung over." But there is something more happening in my body. I try to go to work that Monday, but my body isn’t having it. I leave work early that day and almost vomit in my car. I get home and begin the vomiting again that lasts for hours. My roommate, Samantha, takes me to see my doctor AGAIN and, although I am lying in the fetal position on his exam table, sobbing, and telling him something is seriously wrong, he says, "well, I just think it's a recurring flu, take some Advil and anti-nausea pills." I am standing in the Rite Aid pharmacy getting this medicine, trying not to vomit while I wait. This is to be the first of MANY trips to this pharmacy in Los Angeles.
The next night, I am up the entire night in so much pain I seriously think of suicide, because it is the only way I think I could get relief. My roommate is sound asleep and I am terrified. I know if I wake her we will have to deal with whatever it is that is happening. We are in the middle of moving and she is preparing to move to London. I stubbornly keep telling myself I'll be fine. Only I definitely am not. I can’t sit or lie down or stand up. In fact, I find I can barely walk. The only thing that helps is pacing. If I sit I can only rock myself to ward off the pain. I have a fever of 104 degrees and I am delirious. Finally, after days of pain and headaches, I go to the hospital.
My friend, Heather, takes me and waits with me while I rock in nausea and pain, until they have a bed for me. She harasses the nurse at reception trying to get them to see me before I vomit all over their lobby. She tells me later she told the nurse she is worried I might be having brain issues, and could she please see me ASAP. We end up waiting for a bed for almost 2 hours. Samantha arrives and they sit with me in the ER while I am put through a CAT Scan, blood work, a chest x-ray and urine testing. Samantha and I are able to laugh in the bathroom at the situation when she is holding my iv bag while I do the urine test. They watch me get the CAT Scan and their faces are a mix of anxiety, concern and love. Everything is found to be normal. But I am still in terrible pain in my body so I am given morphine and the pain begins to recede. At one point there is no morphine getting into my system because the drip is cutting itself off, and the girls insist a nurse come in and fix it. I am so grateful they are there looking out for me because I am too out of it to do so; I am dreaming about roast beef with wings flying around me. The E.R. doc tells us they can only stop the pain and can’t really diagnose me, and that I need to go see a rheumatologist. When I go home I spend the night itching as the morphine leaves my system. But I don’t have a headache for the first time in a week.
I start this month and again I feel good. I travel home to Philadelphia for a week. I feel great at home and think that my episode in January really must have been the flu. Then I am back in LA and it is Day 3 of my period again. It starts with a familiar headache and then it evolves again into vomiting for hours, I am barely able to walk, I have night sweats, chills, fever, shaking, and my muscles are excruciatingly swollen. I think that I must have caught something on the airplane. I am also being tortured by sleep deprivation. Every night I can’t fall asleep and then when I do, I wake up around 4 or 5 AM and lie there until it is time to get up and go to work. I am working part time at this point and every day I get home from work around 1 pm and promptly fall sound asleep in front of the television, the only time my body allows me to rest for some reason. I discuss the hormone situation with my doctor and after saliva tests (that I do myself and send to a lab) I am found to be slightly progesterone deficient, and I think that I have finally figured out what is making me feel so toxic during menstruation. I am put on 1 course of progesterone and after about 5 days I become psychotic and almost unable to mentally function, so I stop.
These are the symptoms I am experiencing: debilitating fatigue, muscle fatigue and inflammation, intolerance to exercise, intolerance to alcohol and sugar, fever, vomiting, lockjaw, hands/feet/calves/knees tingling, chills, night sweats, lips/nose swollen, feeling of being disconnected, cognitive difficulty (switching words and stuttering), headache (feels like there is a band around my head), irrational anger, all symptoms extremely worse during period, irritable - sensitive to light, sound, smell, easiest activity exhausts me, Reynaud's syndrome, anxiety, toxic feeling during menstruation.
I notice at work that I am having a hard time keeping details in my head. I find that when my boss asks me to do something and I don’t write it down, an hour later I forget that she has asked. I also stutter sometimes when I start a sentence and I can’t recall words when I try to make a point. I also find that I reverse words without realizing it when I speak. I am rehearsing a play and forget lines that I know and truly can’t remember them at all. My cast mate has to prompt me. I am terrified my mind is betraying me.
I feel good in the beginning of January, but by the third day of my period I feel like I am being poisoned. It is the middle of the night and I am lying on my bathroom floor in the fetal position, vomiting for hours. I think, "great, here I am in L.A., lying on the bathroom floor, thousands of miles from my family and no one knows that I am dying." I wonder if I have food poisoning b/c I can’t stop vomiting. My roommate, Samantha, is sleeping and I don 't want to wake her b/c I also think it could just be the flu and I will be fine. Plus, I think, what can anyone do for me in the middle of the night? I also don’t want to face the fact that I could be sick with something worse. I go to see my doctor and tell him I feel like my blood is toxic and that it feels like my period is killing me. He doesn’t really address it, and thinks I do have the flu, and that I should take some Advil and go to bed. It resolves itself and I go back to work at my "day job." When I eat lunch at work I sequester myself in an office that no one uses, face the window and read, but sometimes I fall asleep.
The depression continues; sometimes I cry in my car on my way to work, in the bathroom at work and then on the way home. I finally understand what my sister, Tricia, has been feeling for a very long time. She was depressed and anxious all throughout high school, but I never truly understood what she was going through. I don’t know how she did it, especially at a time when depression and anxiety were even less understood and more of a stigma than they are now. I feel like a monster has taken over my brain, and when I look in the mirror I don’t recognize myself. I am incredibly quick to anger and irritable. I yell at my roommate b/c she makes something to eat before she goes to bed and wakes me. I feel like I go into a “rage,” and I literally see red. I feel like I am one of those zombies in the movie 28 Days Later, and the rage has taken me over.
If you are reading this, maybe you suspect you have lyme disease. Maybe you have felt like you are losing your mind and doctors keep telling you there is nothing wrong with you. Maybe you've started to think you should see a therapist. Maybe, like me, you were an active, healthy and happy person, and now you feel like your life is slipping through your fingers and that maybe it would be better if you just ended it. Listen to me now...you are not crazy and you are not alone...
Two years ago I was living in Los Angeles, pursuing my dream of becoming a film actress. While I had aches and pains like anyone and suffered from migraines, I was healthy. I exercised 4 to 5 times a week, drank no caffeine, did no drugs, drank little alcohol, and ate very healthy. I was an active person in great shape, I liked to walk on the beach, I went skydiving a couple of times, spent time with friends, traveled and was generally happy in my life. Most importantly, I had energy and enthusiasm for my life and the people I loved.
In the summer of '07 I shot a film in Idyllwild, CA, in the mountains east of LA. Right after that I visited home outside Philadelphia, PA, for 2 weeks. Looking back I now suspect that it was during those trips that I was bitten by a tick. I started feeling weird in the autumn of 2007, but at the time I had no idea how sick I was. It started with fatigue, and very painful menstrual cycles. I thought I was just tired and stressed from life in LA.; I was working full time, auditioning, dealing with some financial stress, an apartment situation (my roommate and I were being displaced due to a condo conversion), and I noticed that I was having a very difficult time sleeping. I chalked the sleep issue up to life stress. I was also getting increasingly depressed and it was beginning to crush my spirit. I would wake up in the morning and wonder why I should bother getting out of bed. I started losing my temper with the people closest to me. I was incredibly quick to anger, like I was seeing red, but it would be b/c my roommate made noise and woke me, or the cat meowed one too many times. My heart was racing all of the time and my body felt like it was in "fight or flight" mode 24/7. Sometimes I thought it was natural nerves from racing to an audition in the middle of my workday, but the panic would stay in my body long after the need for adrenaline. I began to experience a fatigue so deep it felt that it resided in my very cells. I would walk up a flight of stairs and need to sit down to re-charge. I would take a shower and need to lie down for 20 minutes before I got dressed. Life and every day was something to be gotten through as opposed to be enjoyed. My libido, which was very healthy, disappeared. I cried constantly. When the weekend came I spent all of Saturday in bed. Social engagements disappeared. My roommate, Samantha, asked me to join her for fun activities every weekend and I turned her down consistently. I then started to think I was in peri-menopause, and that I was having hormone related symptoms. I spoke to my general practitioner in LA, Dr. S. I told him we had a history of depression in our family, and now I realize when he heard that he assumed that was the main problem and recommended an anti-depressant. So instead of trying to dig deeper to see if there was an underlying cause to the depression, he wanted to just treat the symptoms. I resisted b/c I really didn't want to be the "kind of person" who takes an anti-depressant, and also b/c despite my family history I had never been depressed like this before. He also thought that perhaps I was suffering from a recurring flu or a virus and it would resolve itself. Each month throughout 2008 the symptoms got worse. I began to get a wicked tension headache that would last 3 days, most often during ovulation. Then, during my period, I would feel toxic, like my own blood was poisoning me. I got horrific pms, cramps, aching in my lower back, shoulders and neck. My left eye started twitching, my lid became swollen and developed a rash. I thought this was an allergic reaction to my make-up, so I stopped wearing it. I had irritable bowel. All of these symptoms would come and go and never seem to happen at the same time, so I was never in a state of such crisis that I thought they were all related. Most of the time I felt ok, but then the symptoms would appear again.
In September of '08 I traveled to Ireland. It was a quick trip and I didn't get much sleep. On my return I started getting sick on the flight from Dublin to Atlanta. I was on a stand-by flight for Atlanta to LA and became deathly ill. I could barely walk and felt like I was going to vomit any second. Everything hurt. I waited for what seemed like days for my flight and when I was finally put on a flight to LA I curled up in my seat in the fetal position and didn't move for the 5 hour flight. I thought for sure I had caught something while traveling and the lack of sleep had exacerbated the symptoms. It started to dawn on me that often when I traveled I would get very sick a few days after, and I wondered if THAT had something to do with it.
Each month after that to the end of 2008 I continued to have even more painful periods. As I tried to understand and figure out what was happening in my body, I assumed my body chemistry was just changing as I got older. I thought I was having a drop in progesterone or an abundance of estrogen throughout my cycle, particularly b/c the symptoms seemed to be "cycling" around my period. I was on-line constantly, researching hormones, and adrenal fatigue, anything that seemed to explain why my body felt the way it did. December of 2008 was the best month I had that year with mild symptoms, but I had a quiet month and got more sleep than usual due to the holidays. I thought maybe I was going to be ok and that it had all been due to the stress of the year and that the worst was behind me. But the worst was yet to come...