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.