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.