I have lots of unfinished posts lying around in my dashboard. I haven’t felt capable of writing anything coherent for some time now.
I went to the gynecologist today. It sucked as much as it always does. I brought a friend for encouragement. I can barely handle touch right now as I feel so sick and vulnerable and pelvic exams always trigger childhood feelings of violation. I am also getting tested for the BRCA (breast cancer, ovarian cancer) gene. A family member relayed the message to me that she tested positive and that she had elected to have surgery (removing her breasts, uterus and ovaries) because of it. I wish testing positive for the BRCA gene was the biggest worry I had right now. Because of everything else that is going on, it’s actually the least. I’ve already lost my thyroid gland, I have an illness that no one seems to understand that has left me unable to work for three years, and I’m bankrupt. Losing my breasts, ovaries or uterus seems mild compared to what I’ve already been through. I know, lots of things could be worse. But, please, don’t remind me. It’s not going to make me feel better.
I can hear the faint sound of TV coming through my son’s bedroom wall. Or it might be that I left the TV on in my room. Either way the “hmmmm” from it feels caustic and the refrigerator buzzing intermittently makes it worse. Not being able to get away from obnoxious sounds makes me long for a padded room. I remember when this symptom first began. It was right after my son was born 13 years ago. Every time the kitchen faucet was turned on I would internally shriek. The sound of the water hitting the metal sink was too much to take.
I’ve been watching too much TV lately. It only reinforces my feelings that the world has gone to shit, everything is fake and Big Pharma is taking over the minds of bodies of people and making them inhuman. I look at people on TV and out in the world and I am puzzled by how they are living. Everyone seems to be in a work and media induced trance. Accomplishment, achievement, money gathering and material possessions are the earmarks of a “successful” life. I was once amongst them. Now in the eyes of society, I am invalid.
I’m amazed when I see people who are able to remain standing and do something like cook dinner after 6 at night. If I don’t accomplish something in the first few hours after I wake up, it’s not going to happen. The body does not cooperate. The mind does not cooperate. I wonder what it must be like to live without pain. It’s unfathomable to me. I take opioids daily and use cannabis to ease pain, but I never achieve pain relief. To do so would require me to use way more opioid medication than I am comfortable with. I only take the amount I know I can easily wean myself off of should the miraculous occur.
This is usually about the point that I quit writing. Mind keeps chiming in, “Who cares?”, and “HOW is this relevant again?” Some part of body is always throbbing, burning, or involuntarily going into spasm. It’s the left scapula today. I struggle to remember rules about writing like when to use apostrophes, which irritates me.
I moved to California 7 years ago. When I arrived by all appearances, I was healthy. I was starting a new job in a career that I loved. I had achieved my dream of earning a Master’s Degree. I was buying a house. I was helping people. Coworkers respected me, and people often told me how much I had helped them. I fell in love (in a non sexual way) with many of my patients along the way. I was working 12 or more hours per day, taking on the toughest patients that no one else wanted. I did four depression groups each week. I could stand up and do things after 6 pm, often staying up till midnight or later being “busy”.
I had never known poor health. The only experience I had with pain was unmedicated childbirth and a recurrent dislocated little toe. Like most of my colleagues I had little patience with patients who had chronic pain and were “drug-seekers”. Influenced by my own past substance abuse and my experiences working in substance abuse treatment, I had a black and white view of mood altering drugs. At the time I had been clean and sober for nearly three decades. My beliefs had led me to avoid any drugs, even when I had surgery. I had also been a vegetarian for two decades. If you asked, I would have told you that I was most proud of my brain and my educational accomplishments. I was convinced I could conquer most anything I put my mind to.
This is usually when I quit writing again. Because my left shoulder feels like it is collapsing into my ribs. I’m in pain and I’m already tired of writing.
I’ve lost hope again that I will ever achieve wellness. I am not even sure if I am close to the truth about what is wrong with my body.
After I had been having health problems for about four years, I was diagnosed with Lyme disease. My healthcare costs for the year after I was diagnosed amounted to over $112,000. I stopped being able to pay my medical bills, and eventually my credit card bills too. I have nothing left. I struggle to feed my child. Adding insult to injury, two years post diagnosis I’m not better, and many times I am worse.
This is usually when I quit writing because I get lost in the swirl of being overwhelmed by too many problems, too many worries, and I start to think, “this writing shit isn’t helping”.
I’ve gone in and out of believing that Lyme is at the root of my now multiple afflictions. My most recent mind fuck about it came in the form of a blog post asserting that both the ILADS and IDSA are wrong about Lyme. The author of the blog post asserts that the spirochetes aren’t living in us, but that the bite of the tick with all his nasty shit set off an autoimmune disorder of a catastrophic portion, something similar to HIV, but without a useful treatment like HIV now has. I am bastardizing this person’s post trying to explain what the point was. This person had done the research and suggests that Chronic Lyme is not caused by spirochetes ravaging our tissues but instead by ospA. To the best of my understanding ospA is a component antigen of Lyme disease that was used in the failed Lyme vaccine. The Lyme vaccine failed because it actually caused all of the symptoms of late stage Lyme that we now experience. Here is the really important part. The vaccine did not contain spirochetes or co-infections and yet it caused the devastating life killing disease that many of us who have been diagnosed with NeuroLyme are experiencing. My apologies to the original post’s author for my bungling explanation. You can read the blog post here:
“This is not a bacterial disease. It’s a nightmare of immunological meltdown.”
Source: The Lyme Gut Punch
What if this is true? No spirochetes, no biofilms, no list of never-ending co-infections? There is a lot of emotion behind this issue for those of us who have been diagnosed and treated for Lyme. We have suffered within our bodies, we have suffered at the hands of the medical community, we have suffered within our personal relationships.We are desperate for answers. Let’s face it. A spirochete linked illness that has a treatment (a rather miserable treatment full of more suffering I might add) is preferable to an ospA related illness, which there is no current treatment for, nor is there research designed to study it. Please do not misunderstand me as saying that Lyme disease and chronic lyme disease do not exist. I’ve lived the symptoms and this shit is real, and it is systematically destroying my body.
The information I read about the ospA theory just blasted a hole in my mental facade. I had been trying to bring in light, trying to make some changes that could bring potential benefit for myself and my son in the near future. Reading that information, even if it’s not true made me feel that perhaps I have possibly been conned by another medical community, and these were supposed to be the good guys.
My thoughts about this are fueled by the knowledge that Lyme literate healthcare providers are making a killing on the backs of Lyme patients. On a Lyme message board recently I read that Lyme patients are paying over $800 dollars for a first visit with a new Lyme doctor just north of here. My first visit to a Lyme practitioner cost about $500 before supplement costs that I had to pay up front and then submit the bill to insurance which I was not reimbursed for. It didn’t seem like a good fit and so I sought out another Lyme specialist. It was $600 paid up front just to walk through the door. He recommended more testing and supplements that set me back about $1000.00. The additional testing added nothing to my diagnostic picture.
Finally I found a LLMD that accepted my insurance. It worked out well for a while, but now my LLMD has also become financially out of reach for me. Lyme patients who have my insurance are offered 15 minute in-office visits in accordance with what the insurance reimburses. These 15 minute visits come with a $55.00 copay. Follow up visits are offered by telephone for 30 minutes, accompanied by a $40.00 copay. I guess you could say it’s better than nothing, but my first go round with it provided me with essentially nothing. The first visit was “hi, hello, look at 2-3 lab results, goodbye”. The second visit via phone the Dr. went over lab results we had already looked at in the 15 minute visit. Then the Dr. went on a tangent related to hormone replacement which I didn’t even want. I’ve had bioidenticals prescribed for me twice now and have been overdosed on progesterone (causing symptoms of Sjogren’s disease) and testosterone (causing me to have unexplained rage). My brain was not working at capacity during the phone visit and I had no ability to redirect the Dr towards something more relevant to my current symptoms. The hormone conversation took up the rest of the time and then it was over. I got nothing. I thought about calling the office, trying to explain that I was not getting what I needed, but I knew I would just be offered another $40 phone call. And like most things that require motivation and brain power to accomplish, it just fell to the bottom of the list of things that seem too overwhelming to contend with.
I know I must not be the only person living in poverty as a result of Lyme disease. I’m frustrated by stories of people with Lyme who are travelling around the world for the best treatments. Some people are funded by their parents, or spending their life savings I guess. People are able to afford things like infrared saunas, rife machines, or visits with the famous Lyme doctors like Stricker, Burrascano or Jemsek. Everyday it seems some new Lyme specialist is offering some new Lyme treatment that claims to knock it out of your body for several thousand dollars. And these businesses are thriving because people are literally dying to be cured.
Who is winning here?