Live from the Infusion Center. . .Hope

Right now I am sitting at the infusion center while my IV Zithromax drips into me. I was reading a book on hope and how it relates to our health. I have so many questions about hope. What determines who holds onto hope during a challenging illness and who looses hope? Do we all start with the same amount of hope? Maybe the extent to which we have hope stems from our personality more than from our experiences. It could be the other way around. Some patients suffer horrible life threatening illness and have tremendous hope that they will get better and other people only have relatively minor illnesses and they seem to have no hope. People always ask me how I am able to stay positive after suffering and feeling awful for 10 years. It is a hard question to answer. Maybe the idea that I will never give up helps me have hope. I just cannot imagine having to deal with this illness and not being optimistic and hopeful. If I had a bad attitude, I would still have to deal with the same physical problems, only I would be more mentally miserable. Maybe other factors play a role, such as having a supportive family. I have an amazing group of family and friends who support me. Maybe that helps me stay more positive and hold onto hope that my future will be better. I will get better. I choose to have hope. A few days ago while I was here, I overheard an MS patient say that God was torturing her everyday and that maybe it would be better if she died and went to heaven. Listening to her made me so sad. IT sounded like she had given up and that she was truly suffering physically and emotionally. The cancer patient next to her tried to cheer her up by telling her how she copes with her limitations and daily challenges. Sitting across from both of them, I could see how each woman had chosen, whether consciously or unconsciously, what level of hope to possess. Hope is related to optimism. I think that optimistic people probably have more hope than pessimistic people do. I do not mean to imply that having unrealistic hope and blind optimism is always for the best. I think that we have to be realistic about our health situations. We cannot just hope that cancer will go away and ignore medical advice. I cannot just hope that I will be able to go to a job tomorrow. I have tried to will myself to get better and will myself to do what I want to do and it does not work. I usually end up fainting. My body dictates what I can do but I cannot help but wonder if having hope in our minds, helps our body function optimally and therefore gives us the best chance of getting well. I wish that all of us who are suffering can find hope and that the hope can help us reach a better quality of life.

Packing for the Weekend

I am leaving today for Portland, OR for a weekend trip. My husband and I are going to visit my college girlfriends. It is amazing that I can be 80% sure that I will feel well enough to get on the plane. For many years, I had to cancel trips the day that I was supposed to leave because I was too weak to travel. I can tell that my energy is improving because I actually make it to most of the places that I plan on visiting. The frustrating part of traveling with a chronic illness is that I have to bring all of my prescription drugs and supplements with me. That idea probably sounds like no big deal but when you take 14 prescription drugs, some of which are shots and IVs, the act of packing turns into an ordeal. I am only going away for two nights but I have been organizing my drugs for over two days now. I have to make sure that they have all been refilled so that I do not run out of them over the weekend. I have to pack them with the original prescriptions so that they do not get taken away from me at airport security. I can't believe how many hours it takes me just to pack all of my drugs. I am jealous that my husband can pack for our weekend trip in 15 minutes. I have been making lists about what I will need for this trip for over a week. I forgot to mention that I have to go to the store to buy more protein bars and glucose tablets just to ensure that I do not collapse due to hypoglycemia on the trip. The act of packing becomes more like the act of organizing in my head. Once I get all of my drugs organized, I feel like the extra work was completely worth it. I am just thankful to feel well enough to travel. I just wish that my life could be easier.

A Good Day

I just realized that I rarely write a post when I have a good day. If I have an outstanding day, I write. If I have a challenging day, I write. If I experience a situation that gets me fired up, I write. From now on, I would like to share with all of you my small triumphs. With Lyme disease, we have to cherish the times when a drug helps or when we feel good for a few hours. Today, I felt a burst of energy in the afternoon. It felt great!! I was able to read while I was at the infusion center and then a friend surprised me by stopping by my house. I couldn't believe it when I looked at the clock and I realized that one hour and forty minutes had flown by while we were talking. Usually after twenty minutes, I am exhausted. I constantly have to manage how I am feeling and if I am expending too much energy etc. Today, I just simply enjoyed talking to my friend. I had enough energy to forget that I am sick. I love it when that happens. After my friend left, instead of lying down to rest, I cooked dinner. I can't believe it. The IV Rocephin and IV Zithromax must be helping me. I feel so thankful to know that the drugs that I am taking are helping me. For two years, I took multiple oral antibiotics and I could never definitively tell if they were making me better. I love that I can state that I know that my drugs are helping my body heal and therefore I have more energy. This illness is so confusing on so many different levels that it is a blessing when there is a direct link between an action that we take and an outcome that we experience. I am taking IV antibiotics and they are helping me feel better. It is that simple. I don't know how I will feel tomorrow, but today was a good day.

Sick with a "normal" illness

Currently, I am sick with a "normal illness," the flu. I have not been this sick with a flu-like illness since I was 11 years old. I now realize why infants and older people are at risk of dying from the flu. What I have right now is a nasty illness. Part of me feels like I don't deserve to have the flu because I have to deal with not feeling well every day of my life anyway. No one deserves to catch the flu but for people with chronic illnesses, it just creates more suffering. The other part of me is so glad that I have something normal that other people can understand. When I tell people that I have the flu, they respond empathetically right away. They can relate to me and to my illness. Most people have had the flu at some point in their life. It is so strange for me to receive such understanding about the flu when what I deal with every day with Lyme disease is just as challenging. All of a sudden, I am part of the regular population and people respond appropriately. They don't challenge the integrity of my claim that I have the flu. It is refreshing to be able to say in one sentence why I can't come to an appointment and to have an immediate understanding. When I state that I am sick from Lyme disease, I always know that I will have to either provide all of the information about Lyme or I will have to argue the case that Lyme even exists. For those of you who are reading this post and do not have Lyme disease, imagine that you have the flu and you go into a doctor for help because you are feeling horrible and the doctor tells you that the flu doesn't exist. That is exactly how it feels to be a Lyme patient.

I Skied Today!!!!

I am in Lake Tahoe with my husband right now. We are here for a week. Since we arrived, we have spent most of the time sitting by the fire and relaxing. Well, I have been relaxing while my husband has been working. We came up here to have a change of scenery and to ski. Skiing represents health and hope for me. For the first 6 years of my illness, I could not even imagine skiing. Just thinking about putting on all of the gear was exhausting. That would have been all that I could have done during those years. In 2003, as my health improved, I skied in Zermatt, Switzerland. The act of skiing for a few days in a row was affirmation that I was claiming my life back. It thrilled me to be doing something athletic and fun again. Skiing feels like the opposite of sitting on the couch to me. Unfortunately, I relapsed in 2004 and I have not skied since until TODAY!!! We skied at Alpine Meadows in North Lake Tahoe. At first, I was so out of breath that I had to stop often. I had to stop about four times down each run to catch my breath and to let my leg muscles recover. I didn't care though. I just couldn't believe that I was on the slopes again. At one point, I just had to sit down on the slope and rest. By the end of the day, I completed 10 runs. I am exhausted and extremely out of shape but I did it. I skied! Now, I can barely move my legs so I can only imagine what I will feel like tomorrow. I know that I will spend tomorrow feeling crummy and resting on the couch but the success I had today will be worth giving up tomorrow for.

Port Surgery

I survived surgery!!! I had surgery to insert my mediport on November 26. I was extremely nervous about being put out because my last experience with sedatives was a disaster. This surgery was a breeze-well, almost a breeze. I fainted during the IV insertion which is so embarrassing. I don't know what happened. Once in a while I have a vasovagal response and I faint. After I recovered from fainting, the rest of the day seemed easy. When I woke up from the anesthetic, I did not feel nauseated. I just felt sleepy. An hour after waking up, I was able to go home. It was a strange day because by dinner time I actually felt better than average. I had surgery that morning and yet I was sitting up at the table eating dinner with my husband and my parents. I actually answered my phone! I had the energy to do things that I cannot always get done on an average day. I wonder if my energy boost was caused by something in the anesthetic, by the hydrocortisone that I was given in my veins during the surgery, or by my FIRST dose of the IV antibiotic Rocephin. I pray that it was a direct result of the antibiotic and that I will have a lot more energy to look forward to as start down my journey on this strong medication. I will keep you posted!

Fighting for Treatment

Today I was actually nervous before my appointment with one of my favorite doctors. I had not seen him for a year and a half. He tried to help me for years when I thought that I had Chronic Fatigue Syndrome. What I love about him is that he relies on scientific studies and yet he is also willing to try unconventional drugs and treatments just to see if they help me. If they do not cause harm, then he seems to have the attitude of why not try it. I was nervous today because I had a big question to ask him: Would he prescribe Rocephin, the IV antibiotic, for me to have infused at his medical clinic? I knew that he might not agree that I needed Rocephin. I also knew that the much bigger question would be whether or not he believed that I have Chronic Lyme Disease. He is a rare doctor who follows the infectious disease guidelines and yet thinks for himself. I did not know what direction the appointment would go in. We ended up having a good conversation about my health. He still believes that I truly have Chronic Fatigue Syndrome and not Lyme disease. It is so hard for us to have to persuade and convince the doctors of what is actually wrong with us. It is maddening. As I sat there and he told me that my positive serology for Lyme did not mean anything to him, I started to sweat. Why should I have to defend what is wrong with my body? I just want to get better. I don't care what the doctors call my disease but I want them to help me regain my life. I tried to remain calm and I also subtly shared with him my knowledge about why I did not agree with him. I am proud of myself for making a case for Chronic Lyme and yet focusing on my treatment from his perspective. I hope that he learned something from me. I will be happy if it makes him question what the infectious disease doctors claim. At the end of the appointment, he did agree to try and prescribe the antibiotic for me under the premise that it will help the infections that I have due to Chronic Fatigue Syndrome. Even though I know that I need the drug for Lyme disease, I will not argue over the rational behind prescribing it. I just know that I need it to get better. I felt like I should have been thrilled by his cooperativeness but I just felt numb. I know that even know he is trying to help me, there is a good chance that the insurance company will still refuse to pay for my treatment. They have denied me IV infusion therapy at home because they claim that it is not medically necessary for Lyme disease. I am desperately trying to find Rocephin at a price that is less than $1000 a week. My attempt to circumvent the insurance company's rules and try to get the clinic to give me the antibiotics as a procedure is my way of being creative. This disease causes us to have to fight on so many levels. We have to fight to prove that there is actually something wrong with us, then we have to fight the doctors who say that Chronic Lyme does not exist, and finally, we have to fight the insurance companies who refuse to pay for our treatment since supposedly our disease does not exist and therefore they have no obligation to pay for our treatment. Do you all see how insane this is? We, the debilitated patients, have to do all of the work to fight for our treatment. My appointment today really highlighted how we have to argue, persuade, and fight just to be given access to appropriate treatments.

Bow Ties and Surgeons

Today I met with a surgeon to decide which kind catheter to insert into my body so that I will be able to receive IV antibiotics daily. The surgeon, a gentle man wearing a bow tie and crocks on his feet that proudly displayed his alma mater, carefully described my different options. As he talked about one of the options that would involve tubing sticking out from my shoulder, I felt uncomfortable and I just wanted him to stop talking about that option. I don't want a weird tube sticking out of my shoulder for a year or more. I would rather have to endure a needle stick every day than have tubing coming out of me. The mental discomfort of having weird tubing attached to my body far out weighs the physical pain of piercing my skin to access the line every day. Maybe I surprised him when I told him that I do not mind the needle but I have become accustomed to needles and pain ever since I started my bicillin shots. With about ten percent of the surgeons help and ninety percent of my fellow Lyme patients help, I choose a mediport. I will have to have surgery to have it installed into my chest but I believe that it will be the best option for me. I absolutely love to swim and I will be able to swim with the port. I feel confident in my decision to go with the port. Now that I have finally come this far along with my treatment decisions, I am ready to have the surgery. I am tired of talking about it and I am ready to get it over with and to move on to flooding my body with antibiotics.

2nd Opinion Lyme specialist

Today I told my story. Today I recounted nine years of doctor's appointments, nine years of medical tests, and nine years of different diagnoses. I did it in extreme detail to the best of my ability. I started my health history timeline with the tick bite when I was five years old. My mom sat with me and the two of us tried to remember all of my childhood illnesses. We told this new lyme doctor my history. By telling him my history, I told him my disappointments. I did it with vernacular including words such as the Mayo Clinic, Spec scans, and adrenal insufficiency. Every word that I uttered was a medical word. Mostly, I talked about my symptoms and their possible causes. This new doctor was good. I do not usually state such simple ideas as "good" and bad" but I truly liked him and I trust the advice that he gave me as to how to proceed with my treatment for Babesiosis and Lyme disease. I know that I should have felt like the appointment was productive. I left feeling numb. Somehow the act of putting nine years of pain and suffering onto 3 pieces of paper is upsetting. Has it really been nine years since I collapsed? I have tried multiple therapies and I have sought the advice of multiple specialists. The cycle of hope and disappointment was apparent to me as I reiterated my story today. How do I know if this new doctor will give me hope as I try his treatment options only to disappoint me in a few months or a few years from now when his protocol fails? The truth is that I do not know. I still have hope. Hope keeps me going. I want to get better. I do not know exactly why I still have hope but I am thankful that I do. Maybe the experience of being human innately makes us want to be hopeful. If we don't have hope, we cannot keep living.

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.