Loss of Brain Function with Hypoglycemia

Since November, my hypoglycemic symptoms have continued to worsen. The hypoglycemia is now causing me more acute problems than the Lyme disease causes. During the course of an average day for me, I experience nausea, shakiness, sweating, hunger, and the inability to think clearly every two hours and sometimes even more frequently. The symptom that has become the most prominent is my rapid loss of cognitive function when my blood sugar drops. One minute I will start to feel slightly shaky and hungry and five minutes later, I cannot comprehend what is on a menu. My husband has had to read a menu and decide what to order for me. As my blood glucose levels drops, my brain doesn't have enough glucose to function properly. It is a terrible and bizarre feeling. When I start to feel like I need to eat, I only have five minutes or less before my brain stops functioning. I have to concentrate extremely hard just to make a sandwich. I realize that this symptom is more unusual than the sweating and the shakiness that most of my friends experience when they have hypoglycemia. On Thanksgiving Day, I did not eat enough protein with my lunch and my blood sugar plummeted. While we were sitting at the table for our holiday meal, I could not think straight. My husband says that I said some strange things during the meal. I remember feeling weak, spacey, and faint (and this was after snacks and glucose tablets). I just wanted to lie down but I had to keep eating because I knew that only food would make me feel better. I don't remember what we talked about during Thanksgiving dinner. I know that I sat at the table and I ate two plates of food but that is all that I remember. After the food was digested and it had raised my blood sugar level, my brain function returned to normal. Not only is my cognitive function getting worse with the hypoglycemia, but also I have to consume more quantities of food before the symptoms disappear. Why did I have to eat multiple snacks and two plates of Thanksgiving food for my symptoms to abate? A recent example of this brain function issue is when my Mom started asking me some basic questions while I was hypoglycemic and I could not answer her and I could not process her talking to me. It was too much for my brain. I felt terrible at the time and I just wanted her to stop talking. Ten minutes and one sandwich later, I had recovered. I keep telling my endocrinologists (yes, I have more than one) about these symptoms but they tell me that they do not know how to help me. I am the rare patient that they do not know what to do for. I am sick and tired of being the rare and “special” patient. I just want to find a cure for one of my problems. If my hypoglycemia could get better or resolve, then I could concentrate on treating more of my Lyme symptoms.

Hypoglycemia worse? Really?

A few months ago, I wrote a blog entry about my hypoglycemia symptoms. I thought that they had reached the apex and that they could not get any worse and yet, they are worse! Most nights I cannot sleep through the night without getting up to eat. When I wake up, I don't wake up hungry but I wake up feeling shaky and faint. I keep glucose tablets by my bed so that I can pop one in my mouth and it will keep me from fainting so that I can walk to the kitchen to find some real food. The strange part is that I always eat a large bedtime snack that is full of fat and protein. That snack used to ensure that I could sleep through the night. Now, it seems that no amount of healthy food can keep my blood sugar in a steady range. What is going on? This lifestyle is insane. I am completely controlled by food. Sometimes I don't even have an appetite but I have symptoms and the only way to make them go away is to eat. I can actually be found eating a protein bar in bed these days. I just want to sleep but I have to eat and grabbing a bar by my bedside table is the fastest path back to sleep.
For a few weeks, I kept a food journal and I counted calories. I am eating approximately 3,000 calories a day. Some days I try to eat less, because I have gained 35 pounds in the last 2 years, but the decrease in food intake just makes my symptoms occur more often throughout the day. I reach for a cheeseburger and I feel like I am eating to survive (and yet I am packing on the pounds). I know that if I eat a meal or a snack with a large amount of fat and protein that I might ensure an extra 30 minutes before my symptoms come roaring back. I am currently seeing another endocrinologist. So far, all of my doctors tell me that they do not know why my hypoglycemia is so severe. I hope that one of them finds an explanation and a way to help me SOON!

Obama's Win Causes Fatigue

Today is the day after Barack Obama won the presidential election. All day yesterday I was excited. I was excited to participate by voting for him and I was thrilled to watch him win. I am happy for our country right now. I have never had such high hopes for a political figure. As a history buff and as an American, I was overwhelmed by the progress that our country has made by electing an African-American president. The event was truly historic. I didn't anticipate how emotional the evening would feel to me. I watched the election coverage last night for six hours. I went to bed happy and I woke up feeling like I had been hit by a train. My fatigue was overwhelming today. I was happy that Barack won but I physically felt awful. Today was a good example of how I can be emotionally and intellectually excited, happy, and relaxed and yet I can feel physically miserable because of the crushing fatigue. I think that I woke up feeling worse today because of all of the excitement that I experienced yesterday. My body does not know the difference between good stress and bad stress. Yesterday was a more stimulating day for me. My body probably put out different amounts of hormones, including adrenaline throughout the day. I can't believe that I feel the same crash into fatigue the day after I have a fight with my husband AND the day after my candidate wins an election. It doesn't matter if I am emotionally happy or sad, my body reacts the same.
During the last ten years of being sick, I have had some people, obviously people who didn't really know me, tell me that something happy would cheer me up and therefore make me feel better. My fatigue is not based on happiness or sadness. I am actually an extremely upbeat and happy person. I feel fortunate to still feel happy after all of the challenges that I have gone through and the ones that I still face every day. I used to feel happy automatically but some days I have to choose to be happy. It is my way of not letting my disease control me. The causes of my fatigue are complex and include adrenal insufficiency, hypothyroidism, and neurological Lyme infection. I am not depressed and my energy level does not correlate with my mood. I can have a day where I am emotionally down and yet my fatigue is better or I can have a day, like today, where I am emotionally thrilled but physically fatigued to the point that I cannot get off the couch for the majority of the day. I think that the fact that wonderful events can cause fatigue that is just as bad as the fatigue that I experience after horrible events points to the idea that maybe my fatigue is related to stress hormone levels. My body might perceive a good even as stressful. It just doesn't understand the concept of good stress!!! I hope that my doctors can help me get to a point where good stress no longer causes such extreme fatigue.

Want a Career

I am so frustrated that I am 31 years old and I do not have a career. I have not worked since I was a swim coach at age 20. This is not the plan that I had for my life. By now, I was supposed to be a doctor or a psychologist. I would have volunteered in third world countries as a professional. My colleagues would have respected me, etc. I can go on and on about what I would have done if I had not become ill. I used to dream about all of the possibilities in my future when I got well. When is that day ever coming? Will I actually get better? Throughout the years I have had to keep readjusting my goals and my expectations. I have gone from wondering what I want to do to wondering what I CAN do. I still have the same ambitions and desires but it is devastating to physically collapse from every work or education endeavor. I have tried to finish my undergraduate degree three times since I became ill and had to leave Whitman College. Each time I try, I end up back in bed with crushing fatigue. I make myself worse by trying to reach my goals. The biggest goal I have is to get better but at some point, I need to think about my goals outside of my health. Lyme disease is not who I am it is just what I have to deal with every minute of every day.
Since I first got sick in 1998, I have been convinced that I would become well enough to become a doctor, a physician’s assistant, a psychologist, a medical social worker, and recently, I decided that nursing would be the perfect combination of all of my interests. While I was on IV antibiotics at the infusion center, my fatigue improved to the point that I could actually see myself becoming well enough to go to nursing school. I felt so fulfilled that I would have a career. Now, a few months later, I am still no closer to going to nursing school. I think that I was being overly optimistic that I would be well enough to go through nursing school. Now, I have to put the dream of going into medicine on hold. Will I ever reach it? The scary answer is that realistically I don't know if I will ever be well enough. I am angry because I know that I would be a great nurse and yet I cannot be one. What am I supposed to do? What if all I can do is run a few errands on a good day? I used to value myself based on my accomplishments. Now, I don't have any accomplishments besides getting out of bed every morning despite feeling horrible, and tackling my day with a smile and a positive attitude (which is a feat in itself when you have this disease). My true accomplishment is fighting this disease everyday year after year. I have the right goals and the right attitude but I physically cannot work. I hope to have a career someday that represents my personality. I don't know when that someday will be but I am waiting. I refuse to give up on my goals.

These years of being sick have taught me not to judge myself, or anyone else, based on their accomplishments but, rather, on their character.

Kicked out of Infusion Center

Today I got permanently kicked out of the infusion center. I never thought that I would speak those words. My doctor called me into his office to tell me that the head oncologist at the infusion center reviewed my medical records that stated that I was being treated for Lyme disease and he decided that he did not want me to be treated for Lyme disease in his infusion center. The oncologist also stated that he did not approve of IV antibiotics for Lyme disease. Because he did not agree with my treatment, he stopped it. He is an oncologist, not a Lyme specialist. How does he have the right to decide what treatment is best for me. He has not met me. He has not consulted my Lyme doctor. I would have thought that he would at least want to find out if the treatment is helping me. No, instead he just cut me off. I hate that he had the power to change the course of my treatment and therefore of my daily suffering. The financial cost of doing IV antibiotics at home is tremendous. I never thought that a doctor would deny me my treatment. I always thought that the insurance company would be the one to stop it. What has happened to our medical system that we let a cancer doctor decide whether or not a Lyme disease patient needs IV antibiotics? The oncologist might have known that Lyme disease and its treatment is controversial and therefore he did not want anyone getting treated for it at his infusion center. It seems like politics were more important to him than investigating my case. I have the wrong disease! I don't want to be involved in a controversy over the existence of my disease and of its treatment. I just want to feel better. Other patients with other diseases don't have to fight against doctors just to get the treatment they need. I am in shock that I can never go back to the infusion center again. I am angry with the oncologist and yet, at the same time, I am thankful that I received 9 months of treatment. I should be able to get all of the months of treatment that I need but with this crazy illness, I have to be thankful that I even had some treatment.
I was so close to making it through an entire year of IV antibiotics. They cut me off just 2 months before I would have hit the one-year Mark.
Friends are asking me what I am going to do now in regards to my treatment. The truth is I DON'T KNOW. The IV drugs that have been helping me may not be an option now.

Pregnancy and Me

For three years now, my husband and I have wanted to have a baby. I can probably get pregnant BUT I can transfer Lyme disease and the coinfections, Bartonella and Babesia, to the baby. The idea of making my baby sick is terrifying. Also, the Lyme and the coinfections can cause problems with the pregnancy. I keep going through months and months to years and years of treatment so that I can lesson the load of bacteria and parasites in my body by the time I try to get pregnant. I want to have the best possible situation for the baby and for me but I don't want to wait many more years. I can protect the growing baby from Lyme disease if I take a pregnancy safe antibiotic throughout the whole pregnancy. The problem with Babesia and Bartonella is that the drugs that kill them are not safe for pregnancy. If I still have the coinfections when I get pregnant, my baby would be unprotected from them. I have been treating Babesia on and off for three years now. My serum levels are almost negative. The bad news is that I recently tested positive for Bartonella. Now, I need to put off getting pregnant and treat Bartonella with IV Levaquin. Sometimes it feels like I will never be done with these treatments and that I will never be given the okay to have a baby. Both of my doctors always tell me that I need about four more months of treatment. Those four months turn into four more months and the time keeps going by.

Horrible Fatigue in Palm Springs

Four days after my possible line infection scare, I flew to Palm Springs with my family. I am sitting in our condo looking out at the golf course right now. I have been going to the infusion center every week from Monday through Friday since November and it is now June and I finally have a week off. I have been looking forward to this week off for months. I was supposed to be feeling better! Now, my fatigue is worse than it has been in a year. What is going on? It turned out that my line was not infected and that I did have a cold but I am over it now. Did the Vancomyacin somehow set me back? Is it something else that is making me feel terrible? I was hoping to be able to play tennis for the first time in 10 years and now all I can do is lay around. I feel miserable. I don't even know if I can go out to dinner with my family tonight. I am scared that I have relapsed.

Infected Central Line?

While I was at my routine checkup with my Lyme disease doctor today, she expressed concern that my mediport might be infected. If it is infected, I am at risk for sepsis, or a full body infection. She suspects that it is infected because I have symptoms of an acute infection in addition to night sweats. I know my body and I really think that I just have the bad cold that is going around. Wouldn't I feel terrible if my central line was infected? Wouldn't I have redness or some indication of infection around the site of the mediport? I do trust my doctor so I have to take the precautionary steps in case my line is infected. She prescribed the IV antibiotic Vancomyacin so I am currently at the infusion center watching it drip into my veins. I hope that it doesn't make me feel awful! I have heard that this antibiotic can cause negative reactions also. I am scared that the Vanco will kill more of the Lyme and do it too quickly and I will have a herx reaction. I will keep my fingers crossed that my line is not infected and that the Vanco does not make my symptoms worse.

Hypoglycemia and Insulin Resistance

I suffer from hypoglycemia, or low blood sugar. I should call it severe hypoglycemia because of the extent to which it controls my life. The symptoms of low blood sugar that I experience are shakiness, sweating, headaches, inability to think or concentrate, and fatigue. I first experienced these symptoms when I become ill in 1998. They have progressed over the years into a huge problem. I remember that the summer after I got married, they became noticeably worse. Around the time that my husband and I were moving into our first house, I had to drive with a soda in the car so that I could keep my blood sugar high enough to be able to concentrate on driving. I have always eaten a healthy mixture of fat and protein and I eat every 3 hours. I thought that my diet helped control my hypoglycemia but when we moved into our house in 2006, I could no longer control it by eating protein and fat. I started to rely on glucose tablets to bring my blood sugar back up quickly. Glucose tablets only help for about 20 minutes and then I have to eat something with protein in it. All of a sudden, I found myself eating a small meal every 2 hours. Two and a half years later I am still getting worse. I have been to numerous doctors and none of them have been able to help me control it. I have tried many diabetes medications that were supposed to help but they all made me worse. What is going on?
The reason that I am writing about hypoglycemia today is that I am experiencing a particularly bad day with my blood sugar. I don't know whether to laugh or to cry. I eat so often it is insane. I have gained 20 pounds in the last year. When I was in Hawaii last spring with my girlfriends, one of them asked me if I was pregnant because I was hungry all the time. When I go to a dinner party, I am hungry for another meal before we have even left the party. I can eat dinner at 8pm and be ready for another dinner by 10:30pm. The worst part is that the only thing that I can do to alleviate my symptoms is to eat. My symptoms come on because my blood sugar drops quickly. I can be fine one minute and seven minutes later I am hungry, shaking, and I cannot think. On occasion, my husband has even had to read a menu to me because my blood sugar is so low that I cannot concentrate enough to read. The symptoms make me feel awful and I seek food to make them go away. I have even had doctors tell me to eat red meat every two hours. That just doesn't seem like a good long-term solution to me. Recently, I found out that chronic hypoglycemia leads to insulin resistance, which leads to diabetes! Am I heading toward diabetes? I really don't need another serious chronic illness!! I have been officially diagnosed with Insulin resistance. The strange part is that insulin resistance is usually a result of being overweight. I was thin for years and now the hypoglycemia and insulin resistance has caused me to need to eat more and as a consequence I have gained weight. My nutritionist tells me that if I loose weight, the insulin resistance will get better. How am I supposed to loose weight when I constantly have to eat to bring my blood sugar back up? Do you see how this is an insane vicious cycle? Today I ate breakfast, two hours later I ate a healthy lunch, and an hour and a half after lunch I had all of my hypoglycemic symptoms back and I had to eat again. Now it has been an hour since the post lunch snack and my symptoms are coming back again. What is going on? My doctors think that it has a lot to do with Lyme disease but they don't know exactly what is causing my body to make too much insulin which drives the sugar lower and then causes me to have to eat again. I better say goodbye for now because my hands are starting to shake and it is hard to type. I have to go eat now. . . again!!!!

More Energy!!!!

Over the last month of IV Zithromax treatment and IV Rocephin treatment, my energy has improved!!! Fatigue is my biggest challenge and I judge most of how I am feeling by my level of fatigue. Fatigue is not even the right word to describe how I feel. A doctor had to explain to me that the only word that the medical community has for the terrible uncomfortable feeling that I live with every day is fatigue. For the first year that I was sick, I knew that there was something terribly wrong with my body. I felt so weak that I could barely walk to the bathroom. The worst part of the symptom is that even when I lie in bed or on the couch, I still feel terrible. Rest does not necessarily help. It is hard to relax and rest when I feel so miserable. The way that I explain the feeling to other people is that it feels like a cross between the part of a hangover that makes you feel awful and having the flu. The fatigue is unique to this illness for me. I never experienced this weakness before I became ill. It is strange to think that a lot of people have never felt like I feel and therefore it is hard to explain how debilitating it is to live with. The devastating aspect is that it never seems to go away. I always have fatigue but my current drugs have been helping me to feel less of it. I am getting better!!! It feels so good to be able to say out loud that I actually do feel better.

My level of fatigue is directly correlated with my ability to participate in life. My fatigue symptoms dictate my behavior. My behavior ranges from staying in bed and literally being too weak to talk all the way to being able to ski or work on my computer for a few hours. During these past 10 years, I have had this whole range of levels of fatigue and it is hard for friends to understand how they can see me out to dinner one night and then I cannot go do something the next night. What people don't see is that I lay in bed and on the couch all day the day that I go out for the evening and then I have to recover from the exertion of spending the evening out. Sometimes it only takes me a day to recover and other times it can take me a week. It sounds crazy but it is very true!!!!!!! Just because you see me out, does not mean that my life is back to normal. I do have more energy but I am still far from being able to work, which I desperately want to do. Sometimes I feel slightly crazy for doing what I do with so little energy. I flew to Europe when I could barely walk through the airport-I am not suggesting trying that. After I arrived, I spent a few scary and miserable days recovering in my hotel room.

I know that my energy has increased because I drive my car almost every day, I enjoy talking to strangers for the first time in years, I read while I am at the infusion center instead of sleeping or watching DVDs, I am entertaining the idea of a career in nursing, and I am much less interested in watching TV. I find it boring but I still do it to distract myself while I rest. Last week, I even felt bored for the first time in ten years!!! I embraced the feeling of boredom. It isn't that I don't have plenty of tasks to accomplish and list items to cross off, but I felt as if I wanted to learn and to do something new that day. When I am just trying to cope and get through the day, then I cannot think about learning new skills or ideas. It is almost as if I have a few different personalities based on my energy level. I feel my healthy personality shinning through. I have always been the same person with the same attitude but now I am able to let people see it through my interactions. From my voice to my smile, I feel the energy=) I am thankful for these "good" days!

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.