HIPPA - What a joke. Let them look.

Lots of ups and downs these days. My body seems to have it's own consciousness and I often feel like I am observing rather than participating in it's endeavors. I'm trying to stay out of judgement when I twitch, shake, stutter or fall. But, I do find myself embarrassed, feeling guilty or weird. I don't know why, but I do. I feel like I should be able to stop it, even when I know that I can't. When I'm having spasms, I tense up and try to stop it and then I find myself even more exhausted when they've passed. I'm working on letting go and trying to go with it and let it ride out. Last week I went to the boardwalk with some friends. As we were walking in to the park, I started to have "an episode". I was sort of bobbing up and down and shaking back and forth. It's hard to explain in words, but it's not exactly cute and people can't help but stare I'm sure. I was feeling slightly embarrassed and wondering if maybe it would have been better had I stayed home, when my friends 'joined in'. They started dancing with similar movements to mine and making beat boxing noises. It was so funny and instantly brought me out of the negative and into a positive, loving place. How lucky am I to have friends like that? It was no big deal and when it passed, we walked into the park, rode the rides and had fun. I struggled during parts of the day and was really tired after, but it was worth it. I am finding that I am able to do more. I spend lots of time in bed after, but I am feeling some progress. I have no doubt, I will eventually be on the other side of this, healthier and wiser. I know my life has been significantly and permanently changed by this, but I have faith.

My little deck garden

I've been gardening and painting lately as I have the energy. I love it. I'm finding the need to create beauty, to plant seeds, to do things that make my surroundings happier these days. I noticed myself feeling frustrated because I wanted the seeds I planted to sprout faster! How funny. That's often how I feel about my health and this healing process. I want it to happen overnight. I get frustrated when it doesn't happen that way. It takes time, energy, care and patience. I am learning patience. I'm learning to be gentle with myself. I am learning how to heal. It isn't always easy.

My latest painting (still in progress)

I received a phone call today that was odd and a little startling. One of my doctors called to let me know that they had received a call from the Monterey County Public Health Department requesting copies of all of my records. The assistant at my doctor's office was confused. She said they told her it was required because of my positive Lyme test. She then asked me if I used to work for them. I explained to her that I hadn't, that I wasn't sure why they'd be needing my medical records and that I hadn't authorized my records to be released to anyone. She assured me that she wouldn't be sending the records and that she thought the request was strange. I hung up and immediately felt fear. Since I'm aware of the political controversy and mis-education surrounding Lyme disease, I assumed this was a negative thing. I felt defensive and attacked. I called the Monterey County Public Health Department myself to investigate. I was put on hold several times before being transferred to a woman who actually knew what I was talking about. She explained to me that since Lyme disease is a communicable disease, the agency was collecting information for community statistics. I told her that I didn't understand why she needed my full medical records, because they clearly already had a copy of my positive Lyme blood-test. Why wouldn't that be enough for their statistics? She explained that they are putting together data and charting the symptoms, blood tests and clinical criteria of Lyme positive patients. They do this for any communicable diseases, as they are considered a public health risk. Since Lyme is a vector borne disease and can be contracted from something in our environment, it applies. Other examples would be diseases that can be transmitted from human to human or animal to human ( Chickenpox, TB, Hepatitis, West Nile, Rabies, Whooping Cough... to name a few). Ugh, I couldn't help but feel dirty and gross. All of this hassle from a stupid tick. A tiny tick. I can't have children, I can't live my life normally, I can't have my privacy, the normal rules just don't apply to me. From a little bug. It's mind boggling. I felt they had the information that they really needed and it made me feel incredibly uncomfortable, so I told her that I wasn't authorizing my records to be released for the department's research. I expressed to her that I felt my privacy was being violated. She listened and then went on to explain that HIPPA (the privacy act supposedly meant for our protection) does not apply to government health agencies. She stated that they did not need my permission to access my records. She went on to explain that my doctors are required by law to turn over all of my medical records to the public health department and if they refuse they would be reported to the medical board for non-compliance.

It was really distressing to think that I have no control over this. I have lost so much faith in our system. After all the misdiagnosis, confusion, and unnecessary damage and pain, now they are taking away my privacy too? I was pissed and scared. I stopped and took a deep breath. I remembered the words I heard from a very wise man this past weekend "paranoia is a way of controlling things when we feel out of control". I was reminded this weekend to stop when feeling negative feelings, to trust the process of life and to breathe. I am learning to do this, to slow down. So, I sat with my uncomfortableness for awhile and I asked for some guidance.

After talking with a friend and taking some time to think about it and take some more deep breaths, I decided this may not actually be a bad thing. It may actually be that they are seeing a rise in positive Lyme testing and they are starting to realize what an epidemic we have on our hands. Maybe they are gathering information because they are actually starting to see that they have been misinforming the public about Lyme disease and what it does to people! The woman from the public health office said that they are evaluating information in people's records and comparing those with all the positive blood test results. Maybe this will lead to public awareness, prevention and proper education to medical professionals. The truth is, I don't have anything to hide or be ashamed of, so why wouldn't I share my records? Let them read it! Let them look at the pictures of the six pounds of tumors taken out of my uterus before and the ultrasound of the ones that are there now. Let them see the countless reports of migraines. Let them look at the notes of all my mysterious rashes, upper respiratory infections, immense body pain, and fluctuating weight. Let them look at my bloodwork with all it's vitamin and mineral deficiencies and abnormal values. Let them look at the map of pain and confusion. And, let them DO SOMETHING about the misinformation they've been giving to the public. For God's sake, let them make the appropriate changes in education, testing and protocol around this disease. Then just maybe, someone down the road won't have such a huge medical record, for them to violate the privacy of.