scan results uncovered emotional pain

Today I found out the results of my SPEC scan of my brain that I had done at California Pacific Medical Center in San Francisco, California. I had a routine appointment with my local Lyme literate physician in which I learned about the results of the brain scan. The results of the scan concluded that I do have abnormal blood flow to certain parts of my brain that is consistent with what the radiologist sees in Lyme disease. I also have a low blood flow to another part of my brain that is not normally seen in Lyme disease. The lack of profusion, or blood flow, to certain parts of my brain implies that the Lyme infection is actually in my brain. I have encephalitis or inflammation of the brain. It is also spreading within my brain because it has moved to a new area. This information disturbs me. On the one hand, I expected my brain scan to be positive because of the memory and disorientation problems that I have been experiencing. On the other hand, I thought that the results might be negative because for most of these past 8 years I have not had that many symptoms of brain dysfunction. I had considered myself lucky until recently when I started driving to the wrong destinations. After I found out that I do have an abnormal scan of my brain, I felt sad. The realization hit me that this disease has actually impaired my brain. What does that really mean? Am I not as smart as I used to be? My identity is tied to my intelligence. People have praised me my whole life for my ability to achieve. Will I be able to reverse the problems with treatment? At the current moment, I can hardly remember how to drive to familiar places or what words to use when I am trying to talk. Just writing this blog entry is incredibly challenging for me. I can't think of the words to write. Words that make no sense pop into my head.
Somehow having scientific proof that the Lyme is in my brain makes the reality more real. I can no longer tell myself that my brain is probably fine. I now know that it is not fine. This illness cannot take away my mind. It has taken so much from my physical body, but I will fight with all my strength to restore my mind. Sometimes I actually doubt my thinking process. It is as if I don’t trust my own brain. I will endure whatever side effects of whatever powerful drug that I have to take to give myself a chance to reverse the damage that it has done to my brain. My doctor told me that eventually she will have to put me on an IV antibiotic because only IVs and intramuscular injections can cross into the brain to fight the infection. It is extremely painful to know that my mental capabilities are now limited by this infection. Without Lyme disease, I am so capable. If only I can rid my body of this awful disease, then the possibilities for me will be endless. I will be free.

Writing

I have been seriously considering trying to make a living as a writer. I have a desire to write. It is a craft that I enjoy and that usually does not take too much energy for me. For the last year, I have been sharing with my friends my interest in writing. The problem has been that I am not sure what to write about. I started writing a book about my experience with Lyme disease. I worked on it for about 2 months but then I decided that I do not need to recount my numerous disappointing doctors’ appointments and my endless suffering as I searched for a diagnosis. Most people tell me that it must be therapeutic for me to write about my experiences. It is helpful but I am ready to move forward in my life as opposed to looking backward constantly. I am over it.

The whole idea of writing came about because I was thinking about what I can do. It is so frustrating to have an illness that limits my energy and therefore my choices. Ideally, I would like to finish college and then go on to get a PhD in Psychology. I barely have the energy to take one class at a time though. If I start on that plan, it will take me 15 years to reach my goal and in the meantime, I will not be contributing financially to my family. I am struggling with my idealistic way of seeing life. I do believe that it is possible to find a profession that I am passionate about and that I can make money at. I argue this point constantly. I have always believed that I would either study medicine or psychology. Then I would go on to be a successful doctor or psychologist. In either scenario, I would be a professional doing some skill that I liked, that I was good at, that brought money into my family, and that was respected. Now, I feel like I have to find what I can do as opposed to what I want to do. Helping other people takes a lot of energy. I can barely take care of myself right now. There is a disconnection between my personality and my body. My body is not cooperating with what my heart and mind want to do. The question that I have is, should I give up on these dreams of doing something ideal for me and settle for doing something, something that I can do. Today, I can write. I don't need any additional classes. Maybe it is like having a skill. Is writing my skill? I had a professor a few years ago tell me that he had no doubt that I would be a professional writer someday. Writing as a career had never occurred to me but I like the idea of it. When I write something that I like, I feel a rush of excitement. It immediately puts me in a good mood. Now, I have to figure out what genre of writing to pursue and how to actually get published.

Feeling Passionate about Lyme

During this past week, I have made a lot of decisions. I want to pursue learning all about Lyme disease. I want to understand why the doctor's disagree about what the standard of treatment should be and why the CDC and the Infectious Disease societies underestimate the numbers of people who have the disease. Why do these organizations believe that four to six weeks of antibiotics will cure a patient of late stage Lyme? What are their motivations for steadfastly maintaining their positions? What kinds of politics are involved? I do not understand why Lyme disease has to be so controversial. People are suffering! Smart, educated people are rendered helpless and disabled by this disease. We could be contributing to society and now we can barely take care of ourselves!! Many of us cannot even work. Sometimes my big event of the day is taking a shower! I don't know what I would live on if I did not have the incredibly supportive and generous family that I do. It hurts me that I am 29 years old and I have not had a "real" job. I became ill when I was in college. I have not been able to finish college or to work for the last 8 years. I want to contribute to society and to contribute financially to my family. I cannot even begin to pay for my own healthcare costs. I feel passionately that the world needs to know more about Lyme disease. I am going to do my part by learning everything that I can. I hope that I will be able to make a difference in other people's lives through education all about the disease.

Opportunity to Work or to Relapse?

One morning last week, I stood in my parent's kitchen and listened to a woman leave a message for my mother. She called for a referral for a wedding coordinator in our area who could plan her entire wedding. As I listened to her talk on the machine, I had an idea. What if I helped her plan her wedding? Could I really do that? I had just planned mine. I had been through all the steps from ordering the flowers to picking out the invitations. I knew that my idea was kind of crazy considering my limited energy. A sense of excitement pulsed through my body-I could actually earn money to contribute to our house that we are trying to make livable. The cost of living is so high in the Bay Area that it is hard to live on one salary and own a house that needs a lot of work. I really wanted to help out. I called the bride back and I explained to her that I was not a professional wedding planner, but that since I had recently planned my own wedding, that I could help her. She was thrilled. We connected on the phone and we set up an appointment to pick out her invitations the next day. It is hard to describe how I felt. Finally, I felt that I might have enough energy to earn some money. I spent 4 hours researching invitations for her. In the end, she and I decided to go see the woman who I ordered my invitations from at a local stationary store. I printed my research, put myself together, look a leap of faith that my energy would hold up for this project, and I went outside to meet Kathy. We successfully ordered her wedding invitations. I know that I was helpful. Kathy and I genuinely liked each other and she asked me to think about how much of her wedding I could plan and that she would come back the next day to talk about our plan and my payment. I loved the feeling that I was doing something to help my family and yet, I was also doing something that was just mine. I struggle with not being able to identify with a profession or as a student. My mind is so capable but my body holds me back. After returning from helping Kathy with her invitations, I was so exhausted I had to lie on the couch for a few hours and do nothing. Here I was-back in the same situation. It seems like I am always struggling between what my body is telling me and what my mind wants to do. My body told me that I had done too much. My hands were sweating and I could not get them to stop. I have learned that this symptom is a sign that I am pushing myself and that I better back off. My mind told me that I didn't want to back off. I was so excited to be contributing financially to my family. I cannot work and therefore I cannot even pay for my own medical care. Any little amount that I can earn will help us. I knew that we needed the money but I did not want to risk relapsing and spending months on the couch and in bed again. AHAH. I did not know what decision to make. My husband was so proud of me and of what I was trying to accomplish. I knew that my body probably couldn't hold up for the whole project and yet I wanted to take it all on so badly. I wanted to prove that I am competent at different tasks. For two days, I was so torn between saying no to the job and saying yes to 100% of the job. I know that those opposing options make no sense. For me, both decisions would have made sense. In the end, I woke up two days later feeling awful. I had a pounding headache and all I could do was lie on the couch. I had to call Kathy to cancel our appointment for later that day. I did not reach her but I left her a voicemail. Half an hour later, I listened to my voicemail. I was shocked! Kathy had called to tell me that she and her fiancé were calling off the wedding and she didn't need me after all. I felt so relieved!! The decision had been made for me. I was not going to do the job because the job ceased to exist. My heart goes out to Kathy. She must be going through a hard adjustment period right now but I was happy to get that message because it meant that I could take care of myself, like I knew that I needed to, and I would also not be disappointing my husband or myself by backing out of the job. Unfortunately, I think that trying to work was a good experience for me but it taught me that I am not ready to do part time work yet. And the struggle goes on. . .

Alicia's Story-Cancer

This is a response that I wrote to a book that I read in January. I have decided to share my thoughts with you.

During the first three years that I was sick, I sometimes wished that I had cancer. No doctor could give me a definite answer as to what was wrong with me, as to what had stolen the life I knew from me. Each time I anticipated meeting a new doctor, usually a new specialist, my optimism and my hope would increase. One of these Stanford or Harvard educated doctors must be capable of solving my case. That thought is what all of my friends would tell me. I was blessed. I lived four miles from Stanford University Medical Center. Stanford would diagnose me and cure me. No one could fathom the idea that what was wrong with me was too difficult for the Stanford doctors to figure out or that Stanford did not specialize in ambiguous mutisystem illnesses.
I wished that I had cancer because then something would be forced to happen. Either I would fight the cancer, and survive or I would die. In that scenario, I never wanted to die. I always assumed that I would fight like hell and beat cancer. After the cancer would have been gone, I would have been able to go back to my life. I would have been cured. My energy would have returned. My parent’s friends would respect that I had something wrong with me. Everyone knows the name Caner. They know that it is serious. I know that some people questioned whether or not I was truly sick. To them I looked like a normal twenty something woman. Knowing that someone doubted my illness felt like a personal attack on my character. If they truly knew me, they would know how much I was suffering and how enthusiastic I am about life. There isn’t any part of me that sort of enjoys lying on the couch in front of the TV. I have had to adapt and accept that it is part of my life. Yes, there are TV shows that I now enjoy, but I would rather be out contributing to the community, working to help support my family, taking classes, talking to my friends, and most of all working on a project that will help others. I would also love to exercise again. People complain about having to get up early and go to the gym. I would give so much to be able to get up and swim a master’s workout in the morning. I miss the way it feels to physically push myself beyond my comfort zone.

I should talk more about why I mentioned the idea of cancer. I realize now that my desire to be diagnosed with cancer and then beat it was naïve and ridiculous. I didn’t know that much about the suffering and fear of death that cancer patients endure. I was just so frustrated with my own situation and my own suffering that I wanted it to have a name that would validate my experience in other people’s eyes. If I had cancer, then people would actually understand that I was sick.

After reading, Alicia’s Story, the story of a twenty-three year old woman battling metasatic cancer, I feel guilty for wishing that I had cancer. She is facing the very real possibility that she will die. I have a hard time understanding how some people can have diseases more serious than Lyme disease, like diabetes, and yet they have energy to live their lives and I am robbed of my energy and therefore I am robbed of large parts of my life. In eight years, I have not been able to finish college or to have a job. I recently married a wonderful man. I am scared that I will not have the energy to care for the baby that we want to have. I do find comfort in knowing that it is possible for me to live a long life. I might be physically miserable but I will still be here fighting. Hopefully, I will improve dramatically with antibiotic and antiparasitic treatment and I will no longer feel miserable. It angers me that my ability to help others and to help my family has been taken away from me. I refuse to believe that I will not improve. I have to get better. I will get better. I have too much to offer this world to not get better.
While reading Alicia’s book, I also realized that she and I have shared many of the same medical experiences even though she has cancer and I have Lyme disease. I could relate to the multiple MRI’s, PET scans, CT scans, and x-rays. She and I both had some of them with IVs in us for contrast die and some of them without. It is so confining inside those machines. I think that I developed claustrophobia since I started having to go into tiny spaces, such as the MRI machines. The hard part of the tests is that the experience of being inside the machine by ourselves produces the feeling of loneliness and anxiety. The aloneness comes from the fear of what the radiologist might find as he/she reads the results. It feels to me more like isolation than it does like anxiety because I am in there all alone, lying completely still, waiting. Will it be good news or terrible news? Will my life change as soon as they roll me out of this machine? Also, there is a strange element of how routinely the procedures are carried out by the medical staff. I understand that the technicians carry out their daily work duties but, for us, it is the quiet moment before our life might change.

I need to go rest now. I hope that some of you can relate to some of the emotions that I have experienced. I think that they are universal for people experiencing serious illnesses.

Smart Lyme Sufferers

Last night I attended my regular Lyme disease support group. I am so impressed with how intelligent and proactive everyone is in the group. I have always been a seeker of information. I enjoy learning about how our bodies function and the disease process. For Christmas a few years ago, I actually asked for a medical school endocrinology textbook. A family friend gave it to me and I read it for hours. I majored in biology at Whitman College for two years so I learned enough about biology to help me read scholarly articles and understand some medical science. I always felt that I was one of the only patients in other support groups for different diseases that I was wrongly diagnosed with who wanted to know what was really going on in my body. Most people just wanted to be cured. Lyme patients seem to be different. They are all like me. They all desire to know what exactly is happening to their bodies and what they can do to get better. Our discussions are very stimulating. I feel fortunate to have found this wonderful group.

Herxing

I was so excited to finally be feeling somewhat better! Now, I am back on Tindamax and Biaxin. I have been continually taking the Biaxin for two months now but I am taking Tindamax on a three week pulsing schedule. I started taking Tindamax again nine days ago. I am feeling the herxing effects. I am so much more fatigued than I was just ten days ago. It is hard for me to leave the house this week. My brain feels so foggy. I hope that my blog entries actually make sense. I woke up in the middle of the night last night feeling strange-I actually felt extremely hung over, and yet, I have not had any alcohol in weeks. I got up to eat because I figured that my blood sugar was low. After I got back into bed, I broke into an uncomfortable sweat. I felt so hot. I had to take all my pajamas off. At least I could see the humor in the situation. As the day as progressed, I have been alternating between freezing and overheating. I hope that these symptoms mean that the Babesia are dying and releasing their toxins in me. I just have to stay focused on the fact that this drug is helping me overall. I have to endure feeling worse before I can feel better.

Lyme More Prevelant

I keep hearing of more and more people who have been diagnosed with Lyme disease. Just this month, I heard of two more people who have been diagnosed with Lyme or who have symptoms indicative of Lyme. One of them is a childhood friend. He contacted me a few weeks ago regarding his symptoms and his possible diagnosis of Lyme. He has all of the classic symptoms. I have been trying to help him get the reliable lab tests that he needs to get in order to get a proper diagnosis. Even though he has all of the symptoms, his western blot test came back negative. This disease is so confusing because it is extremely hard to diagnose. Apparently, the diagnosis has to be primarily a clinical one, but blood tests are also considered in the final decision. Does my friend not have Lyme disease because his blood work came back negative even though he has all of the clinical symptoms and the risk factors for tick exposure? I know that some doctors will tell him that he is fine and that there is nothing wrong with him. He needs to find a Lyme literate doctor. I mentioned to him that I can set him up with a Lyme specialist in the Bay Area. The bottom line is that he is suffering right now. I hope that he can obtain a diagnosis of some type soon. The other person with Lyme disease that I heard about is actually the son of one of my Mom's friends. It breaks my heart to hear about all these children contracting the disease. This young man is in junior high and he has been sick for three years already. He is currently being treated with IV antibiotics but he remains extremely ill. It seems to me that every time I mention that I have Lyme disease to someone new, that they, in turn, tell me that they know someone who has it. Just the other day, I was talking to the woman who we adopted our kittens from and she has a friend in Oregon with Lyme. The rate at which the disease spreads is surprising and yet, the experts claim that it is still very rare on the West Coast. There is a disconnection between the reality of the prevalence of the disease and the official statistics on it. All I know is that the number of people with Lyme disease continues to grow.

Feeling Better=)

I can tell that my medicine protocol is finally working!! My doctor has me taking Biaxin and Tindamax. I take the Tindamax on a three week on and three week off schedule. After these last three weeks of taking Tindamax, I instantly noticed that I had more energy and I could think more clearly. For the last three weeks, I have been driving my car almost every day. Driving takes a lot of concentration and energy for me so I know that I am feeling better when driving is not a struggle. I have been able to help out by running errands for my family. I have even been able to socialize with my friends more, which makes me truly happy. One night, I had so much energy during dinner with a friend that I actually talked to her for two and a half hours without becoming exhausted and looking at my watch. As a result, I missed my train home but I didn't mind because it means that I am making progress. I am excited and optimistic that the Lyme meds are finally helping me!!

Pulling My Weight

David and I got married on October 1, 2005=) Lately, I have been feeling guilty that I cannot share the household work with him to the extent that I would like to. Mentally I am happy to help out more. Right now I am pushing myself as it is to be a more active member of our "team." I am taking on the organization of our personal lives. It is a huge endeavor for me because I have so little energy and therefore so little productive time in a day. For the last couple of months, I feel like all I do is paperwork. I know that is not true but it is taking up all of my energy and I still feel like I am not pulling my weight. It is hard to be married and to feel guilty that I cannot do more to help my husband. I am struggling right now. I become defensive if he even sort of suggests that I could have done more because I really want to do more but I am trapped in a body that cannot do more! For the record, my husband is a wonderful, supportive man. He handles my illness with grace. I know that it is normal for him to feel frustrated that he does not have a fully functioning wife. Sometimes he feels as if he has to do everything for us. I do not like that he feels that way but I know that it is beyond my control. I can only do what I can do. I push myself and I try as hard as I can. I cannot wait to feel better and be able to do more for us!!!

Staying the Course of Treatment

For the last three weeks, I have been taking the antibiotic Biaxin and the antiparasitic drug Tindamax. The Biaxin is for the Lyme bacteria and the Tindamax is for the blood parasite, babesia, which I also acquired from the tick. I feel physically so much worse while I am on the drugs. Part of me wants to stop all my treatment and try to live as normal a life as I can with the energy that I do have. I will not let myself give up on my treatment. I have a possibility to get better and I will not pass that up. In the meantime, I have to endure the suffering that the drugs cause in my body. I never know whether the worsening of my fatigue, my headaches, and my diminished ability to think clearly is a result of the side effects of the two drugs or whether it is actually caused by the toxins being released as the drugs kill the parasite and the bacteria. This reaction is called a die-off reaction, or a herxheimer. The bottom line is that I have to get worse before I can get better. My question is: how long will I feel worse for? Will it be for a few months or a few years? I am learning to live with the uncertainty. I am trying to power through the intense symptoms. In a way, I feel like I am sacrificing today for a better tomorrow. I hope that the future will be better.

Struggle at Cold Play Conert

As a Christmas present, my husband bought us tickets to see Cold Play perform at the HP Pavilion in San Jose, California. For those of you who are not familiar with the venue, it is a huge indoor arena. I was so excited for the concert because I love experiences. I have only been to two concerts in the last eight years because music usually bothers my body. It is often too stimulating. When I say that it bothers my body, I really mean my body, not solely my ears. The night that we left for the concert, I felt optimistic that my health had improved enough for me to be able to withstand the volume of a concert. I was wrong. Cold Play came on stage and the volume of their music overwhelmed me. I could not believe that it was really that loud. I could feel the vibration of the sound in my chest. My whole body felt the music. Ear plugs did not help. I started to sweat and to feel the urge to run out of the arena. My husband had treated me to great seats. Well, he meant for them to be great seats because we were really close to the band but, for me, they were miserable. We were too close and the sound was too loud. I tried to withstand the vibrations. My body was feeling awful. It is a hard sensation to describe. It is extremely uncomfortable. My body feels like it is being attacked and my fight or flight response is triggered. I pushed myself to try to stay in our seats since my husband had paid a lot of money for them. I only lasted for about four songs. We decided to see if I could handle the volume if we sat in the furthest possible seats from the stage. Since the concert was sold out, we climbed to the top of the back of the arena. We sat on the stairs for a few songs. I tried so hard to stay. I kept thinking that if I could just make it through half of the concert, then it would be reasonable to leave. We decided to trade our seats with someone who was sitting in our new section. We just wanted to have seats so that we would be more comfortable. Our plan worked out well because two women were thrilled to be given two tickets to much closer seats. After we had been sitting in our seats for a few minutes, I realized that I might be able to stay through the whole concert. I was still overwhelmed by the noise. I still felt the vibrations pounding in my chest but I no longer had the urge to flee. Had my body become more accustomed to the noise level? I’m not sure what happened. I started to enjoy the music. It was still loud but my body had calmed down. For the last 45 minutes of the concert, I really had a great time. It is frustrating to respond to noise levels in ways that other people do not. I wanted to yell out at everyone and ask them how they could just sit there calmly. Weren’t their chests vibrating out of their body also? Even though this concert experience was stressful on my body, it helped me realize that I am getting better. A few years ago, I would never have been able to stay through even one song.