The Ticket

It’s been a very stressful few days. At the end of last week I found out my son needed surgery on his broken hand. He had the surgery on Tuesday. It went well and he is OK. He and I were driving home from the surgery when suddenly I saw flashing lights behind me.

I drive like a grandma. I used to have a lead foot. I was always in a hurry, always late, and always trying to get somewhere as quick as possible. Those days are long gone. So when I saw the motorcycle cop I thought at first that he couldn’t be after me. I was wrong.

I pulled over and he knocked on the passenger side window while I was digging through my glove box looking for my registration and insurance info.

I rolled down the window. “Any reason why you just ran that red light?” he asked.

“Whaat?! I had no idea…. My son just had surgery and….”

“I need your license and registration,” he said. I handed him my license. I remembered pulling my registration and insurance info out of the car awhile ago and most likely not returning it to the glove box. It could be in any number of random piles of paper that are all over my house. He lumbered back to his motorcycle with my license. He came back with the ticket. As we drove away I erupted into rage.

Earlier that day I had received a call from my son’s pediatrician informing me that they had tested my son for Strep, that the results were “normal” and therefore the diagnosis of PANS/PANDAS was ruled out. I’ve done my own research online. There is solid scientific information on the internet indicating that what they told me was untrue. My son’s pediatrician continues to inform me that she feels outside of her scope when it comes to my son and what she sees as his psychiatric issues. She wants me to take my son to a psychiatrist before she sees him again. There are no psychiatrists in the area that are accepting new patients that take my insurance. The best I can get is a waiting list that is months long.

I saw the look on my son’s doctors face and the psychologist we saw. They clearly see me as a mother in denial who doesn’t want to accept that her son is suffering from severe mental illness. I feel their judgment and I’m tired of it.

And then this cop, out of the blue. To make matters worse I had been pulled over by him a year ago for going 25 mph in a 20 mph school zone. I questioned his judgement then and I question it now. I have no recollection of running a red light. I will fight this ticket and will most likely lose. I’m not going to admit to doing something when I have no recollection of doing it.

The cop handed me a ticket with a price tag of $265.00. While doing so he lectured me about getting my driver’s license and registration moved to this state. I haven’t done it yet because I haven’t been able to afford it. Well now even the possibility of being able to afford it are out of the question.

To top things off I have been feeling extremely sick. After I somewhat recovered from taking the methotrexate I decided to start taking low dose naltrexone again. It made me really sick before so I decided to start with a really low dosage and keep it there for at least a month. I’ve been keeping the dosage low but I have been getting increasingly more sick with each passing day. Finally yesterday I had to stop taking it.

I’ve had a constant headache. My brain is completely fogged in. The pain all over my body has been intense and at times unbearable. None of my regular remedies are helping. The fatigue is incomprehensible. Sleeping does not make me feel rested. I have zero appetite and only eat because I make food for my son. I’m constantly weak and trembling.

After the ticket I just felt an explosion of anger at things I don’t believe I deserve. Why is all of this happening? What I am doing wrong to deserve all of this hardship? I know life doesn’t work like that but I want this nightmare to be over. I’m tired of just existing and basically waiting to die. I’m tired of chasing answers regarding the health of my son and myself and getting nowhere. I’m tired of the constant grey skies, cold, and rain here that make my symptoms and my son’s symptoms extremely worse. I’m tired of living in a town so tiny that you can get pulled over by the same small town overzealous cop twice. I’m tired of constant injustice. I’m tired of everything.

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The Missing Piece

My son has been having problems for quite some time now. I noticed a distinct difference in him soon after he turned 13, so I convinced myself that his changes were a result of adolescence and puberty. Things improved for a while and then they got bad again, and now at 14, he is worse than I have ever seen him.

He has no interest in eating. He complains of nausea multiple times per day. He has a constant easily visible tremor. Every few minutes he takes a deep breath in and tells me he cannot get a full breath. He is at times deeply depressed and other times he will talk incessantly. He has engaged in severely harmful impulses to the point where he was almost arrested. He has broken his hand twice now in the same place after punching his desk in a rage. His anxiety and irritability are constant to the point where I rarely see the sweet soul I know him to be.

He has horrifying violent thoughts he can’t get rid of. He can’t sleep without medication. A few nights ago he started sleeping with me due to his fear of being alone. He has lost 12 pounds in the last two months and has dark circles under his eyes that do not go away with adequate sleep. He has obsessive fears about our dog dying and has started voicing compulsions related to keeping the dog safe. He moved the couch because he was afraid the dog might find something in it, eat it and die. He asks me to put our dog in his kennel so that he can stop worrying about where he is and what he is doing.

Last week I received a call from a school counselor. My son had been unable to attend class due to how he was feeling and sought out help. The counselor told me my son had been hearing voices. It was the same day as the most recent school shooting, and the counselor was extremely worried. When someone my son’s age talks about having hallucinations people immediately think of schizophrenia. Also people are worried in this environment about being held responsible for “missing signs” related to mental health and the potential for violence.

For a long time I blamed his problems on myself. After being so ill for so long, I felt flawed and broken and assumed that was affecting him. I was a wild child; so I also assumed it must just be the way adolescents are now. Additionally I had a lot of shame about going from being a good provider to being a disabled, limited income one. My entire goal in parenting was to provide a better childhood than I had and I began to feel like I had failed in that.

And lets not forget that as a lesbian raising a son conceived from an anonymous donor I was already an oddity in our society. I’ve always felt the reflection of that judgment hanging over me. I can’t tell you the number of awkward exchanges I’ve had with doctors, other parents, and school officials. To cut to the point, there were multiple opportunities along the way to make the assumption that I was a bad parent. And on multiple occasions I came to this conclusion for no reason other than I am who I am.

To top it off I had a difficult childhood myself which resulted in intimacy and trust issues. I had never been “mothered”. I was terrified that I would be the same mother that my mother was: self-absorbed, lacking a protective instinct, and detached.

I was filtering his issues through all of these lenses and as a result I was drawing the conclusion that my son’s issues were a direct result of my genetics combined with being raised by a very imperfect mum.

Last week we went to see the Orthopedist, who informed us that due to the lack of healing that is happening with his broken hand, he will have to have surgery. As part of the surgery screening process he had to have a nose swab done to detect Staphylococcus. I was surprised to find it came out positive, but learned that it’s not uncommon. As a result he was prescribed an antibiotic ointment for his nose. These are all precautionary efforts to avoid infection during surgery.

While I was looking into the Staph thing, I came across an article on PANDAS. PANDAS is short for Pediatric Acute-Onset Neuropsychiatric Syndrome. To put it very basically, it is an autoimmune reaction related to a Streptococcus infection.

Once I began looking into PANDAS more I found that my son has all the symptoms. I strongly believe this is what is going on with him.

I started thinking about my own history. I developed sudden onset OCD at the age of 13 (this is the primary symptom of PANDAS). I had strep throat at the age of 18, which means I am a potential carrier of the bacteria. My paternal aunt died in childhood due to Scarlet Fever (from Strep). Another paternal aunt had Sydenham’s chorea, also caused by Strep. My brother died shortly after he was born due to heart defects of an unknown cause.

The likelihood of PANDAS increases greatly when the child’s mother has an autoimmune disorder (DING).

I have been seeking behavioral health treatment for my son due to his symptoms. He has a therapist, and most recently we met with a psychologist. My son is convinced he is Bipolar. His Psychologist scheduled a test for him tomorrow at three to try to determine what category his symptoms fit into. I’m going to delay the testing until my son has been evaluated for PANDAS. I’m going to speak to his pediatrician about my concerns. If she blows me off I will seek out another provider.

I can see now how my perceptions about myself and my history affected how I viewed my son’s symptoms. It’s hard to see things clearly when I often feel as if I am fighting for my life due to my own illness.

I feel like I understand now that this is not normal adolescent behavior, or the progressive outcome of a severely troubled soul. I know my son better than anyone else. None of his current symptoms are consistent with who he is. This time, more than ever I will trust my mother’s instinct and seek out proper evaluation and treatment for my son.

Here is a link to information about PANDAS/PANS if you would like more information.

https://www.pandasppn.org/what-are-pans-pandas/

The Undercut

I really hate it when someone tries to convince me that I don’t really want what I want. I especially don’t like it when someone tells me I can’t have what I want when there is no legitimate reason why I can’t. It happened to me the other day at the beauty salon.

I go to a nearby beauty school. I’ve used beauty schools for years because their prices are right, and sometimes you get lucky. Additionally the students are often really passionate about their burgeoning careers and it shows in their work. And finally, I like to experiment with my hair and I don’t need or expect perfection.

I’ve been to this beauty school before where I usually ask to be placed with a male student, preferably a flamboyant one. Gay boys almost always give good hair, and they are so damn sweet to boot. But all the boys were taken, so I asked for an advanced student.

She was young, pleasant and called me “Honey”. I didn’t like that so much because it made me feel like an elderly person. I’m old but I’m not elderly. I told her I brought a picture.

“Oh, OK…, let me see what you’ve got”. She gave me the kind of smile that said, “I don’t like clients who bring in pictures”.

I’ve had stylists like that before. They don’t like pictures because they think the client is going to be disappointed when they don’t end up looking like the model in the picture. I don’t expect to look like the model, I just like to experiment with my hair and pictures help me do that.

The picture I brought in was of a woman my age with an undercut. I didn’t know it was called that until she told me. It’s when the hair next to your scalp is shorter than the hair that lies over it. It’s the kind of haircut you would see on someone in their teens or twenties, not on someone who is older and looks like an advanced age soccer mom. Which is exactly why I wanted to get it.

As I was showing her the picture she started screwing her face up and said, “Wait…. you want what???!” I continued to show her the picture and how I thought it could translate onto my hair. “I’m going to have to go get my teacher,” she said, her mouth in a firm line. I knew I was in trouble.

The teacher came around. He looked at the picture and then said, “What I would suggest is cutting the back in preparation for a style like that, and then come back in two or three months and we can do the rest”.

I didn’t understand. I felt like the girl had told her teacher that he needed to come and talk me out of the haircut. She kept telling me that it wouldn’t look good. I agreed to it because I didn’t want her to give me a haircut that she was forced into.

She took me to the shampoo bowl, and when we got back to her chair, there was a young woman sitting diagonally from me who had the exact kind of undercut I wanted. I pointed it out to my stylist.

“Her hair is a lot darker than yours,” she pointed out. “If I were to do that to your hair, it’s going to cut off the color and the rest will be completely white”.

She said that as if I would have to agree that it was a bad thing. My hair is white, and its a really pretty white. I color it sometimes and other times I don’t. “I kinda like the white,” I said sheepishly.

She went on, “Also your hair is really thin and you know how sometimes when hair is really short, it looks like the person is bald?”

Apparently I couldn’t quite let it go. “Yeah, I said, but in the picture I showed you the undercut wasn’t that short—it wasn’t done with a razor…”

She was looking a lot like my teenager looks when he tries to tell me that I can’t possibly know anything about anything. “Let’s just finish this up and you can see what you think,” she tweeted.

She blew it out into a bob. It looked fine. Cleaned up elder soccer mom. No undercut.

 

And it continues

I’m going on two days after I took the last methotrexate, and I’m beginning to feel like saying, “I can’t stand this!”

I’m very weak and extra wobbly. My tremor has gone from noticeable to what feels like major. My whole body feels as if it is trembling.

I decided I was going to make my son some dinner. In this case, “making” means doing something other than taking something out of the freezer and zapping it. I finally had to sit down. I just couldn’t stand any longer. I’ve been on the couch for most of the entire day. I did finally go to the grocery store which was a huge accomplishment.

I started this post yesterday and couldn’t finish it. I was too exhausted and in too much pain.

This morning I woke up and felt only slightly better. The mental anguish that comes from this level of sickness is more than I can take. The last time I felt this bad was when I took antibiotics for Lyme. I can’t manage my minimal responsibilities. I can’t make phone calls. My thoughts are scrambled.

I’ve lost four days this week to methotrexate. I won’t lose another. I’m done with this medicine. I don’t have an Instagram account, but I like hashtags.

#methotrexatesucks

Methotrexate

I took the first three pills Monday morning. By the afternoon I felt sick to my stomach, my pain had increased, and I just felt overall pretty crappy. I had to lie down after I picked up my son. By the evening I didn’t feel like I could do anything but lie down. It sucked, but I thought it wasn’t as bad as I expected. Monday night I took three more pills.

Yesterday (Tuesday) was the worst. I woke up in pain and nauseous. I wasn’t able to eat all day. I ate some saltines and ginger ale to try to calm my stomach. There was no way I could have “pushed through” anything. I was just too sick. All my regular pain pathways were lighting up and catching fire. None of my remedies were having an effect. I began to get seriously depressed because of how awful I felt. Both nights I had trouble sleeping, even with my usual sleep aid. My sleep was fitful and I woke countless times.

Today is Wednesday and I still feel like shit. I can’t taste anything, like my morning coffee, one of my few pleasures that I have left.

I’m berating myself because I can’t tolerate drug side effects. I’m questioning whether or not I will be able to continue to swallow this poison.

My tongue is red and swollen and is constantly painful. This has been going on for several years, sometimes it gets better, mostly it gets worse.

All of this is leaving me feeling defeated, a feeling I tolerate the worst of all.

I don’t know how long I will be able to continue this, even with a promise of “It will get better”. Oh wait, there are no promises in autoimmune disorders. There is probably no whining in autoimmune disorders either.

The Interrogation

Yesterday I had to undergo a psychological exam set up for me by the Social Security Administration (SSA). I didn’t want to go. It felt like a violation. I receive long-term disability insurance from my prior employment and they require me to file for disability through social security because it will decrease their costs if I am found to be eligible.

This process began several years ago while I still lived in California. The woman assigned to my case was a tyrant. She was condescending and rude every time I spoke with her. She chastised me for not having a pen handy when I called her. I found it amazing that she could get away with treating people as she did. I didn’t feel like I had any recourse. I was the one who was charged with proving my innocence by proving that I was disabled.

I did not want to be classified as disabled. I still do not consider myself to be disabled. But I must continue to jump through ridiculous hoops to make sure that I don’t end up losing my benefits.

My first application was accompanied by a four-inch thick pile of notes from multiple doctors, including my Harvard trained neurologist detailing my symptoms. When I received the denial letter several months later, I took it personally. The wording of the letter suggested that as long as I can move my arms and legs, I should be able to work. I filed an appeal, as instructed. My doctor submitted additional evidence. I received another letter from the SSA telling me that they stood by their first decision and that the next step would be to attend a hearing. After all I had been through with them already, I wasn’t about to attend a hearing where I was certain there would be attorneys suggesting I was making all of this up. I ignored their letter.

Then I received notification from my LTD company that I was required to file again. I did as they asked and retained their attorney who was supposed to make this process so much easier. No surprise when several months later, I was denied again. I filed the appeal, and then was informed that I was required to attend the psychological exam.

I arrived at the appointment early. There was a stack of papers in the lobby that I was supposed to fill out. I was determined not to reveal anything I didn’t want to reveal to the interrogator. The psychologist came into the lobby to tell me that there was free parking in the back, after I had already fed the meter in the front. I was irked and had to move my car because I hadn’t put in enough money.

I began to fill out the paperwork, at least six pages of it. I find paperwork to be excruciating. I reminded myself I didn’t have to do anything I didn’t want to do. On the first page it read, “Describe your childhood”. I wrote, “It’s in the past”. Stick to the facts. Next up, describe any form of abuse. I wrote, “no”. I lied. I wasn’t going to reveal my personal abuse history to a psychologist who was being employed by the government to interrogate me. I decided it was none of their business.

I know that I probably could have helped my case by spilling out my childhood wounds. But I wasn’t going to betray myself in order to do so. I have a therapist who I trust that I share things with. And I will not be giving her name to the social security administration.

She noted that my parents had divorced at age 13. “Who raised you after that?” she asked. I resisted the urge to tell the truth, which would have been, “I raised myself”. Instead I just said, “my mother”.

She asked me about the longest period of time I have held a job. I told her four years. She paused at the question related to marriage and children. No marriages, one child. “How many years were you with your son’s father?” she asked. “I wasn’t with my son’s father,” I said pointedly. My son doesn’t have a father, he has a sperm donor with a number attached. I still have the vial it came in. Did she want me to produce it? I thought these things but said nothing.

“You’ve never tried alcohol, or even pot?” She looked at me in disbelief. It was ironic that her office was tucked in between two cannabis dispensaries, and it smelled like fresh weed. I looked her straight in the eye and said, “No.” After working in healthcare since the beginning of electronic medical records, I can attest to the fact that nothing in your healthcare record is private. To protect myself, I never reveal information to medical professionals that could be used against me later on.

She moved on to the psychological testing part of the interview. Psychologists love psychological testing. Most psychologists consider themselves the arbiters of normal behavior. Many are drawn to the profession because they have felt powerless in their lives and seek to control people to compensate. To put it simply psychologists, as a group, are some of the most messed up people I’ve ever met.

Conversely, it is perhaps my failing that I love tests. I love to challenge my mind and I love to compete. I completed my schooling with straight A’s because I love to take tests. So when she presented me with various tests of memory I tried my hardest to succeed, even though I knew that to do so would certainly harm my case.

All bets were off when she handed me a full sheet of math problems on a dry erase board. If there is anything I love more than math problems it’s doing them on a dry erase board. I finished all but one in good time, asking to skip the last one because it required me to think more and I was tired.

She asked questions related to time and place. “Who is the president?” she asked. “Um, one of the biggest assholes in the universe?” I answered. There are some things you just can’t lie about. She grinned slightly and asked who the prior president was. Luckily, I could remember his name.

She produced a series of questions that I was asked to rate from one to four related to my ability to get through the day, complete simple tasks, and self reflect. I answered all of them honestly including the ones indicating that I have zero self-esteem left, that most days I feel like a complete failure, I don’t enjoy anything I used to, and I have zero sexual energy.

Then she produced another questionnaire that had about 10 questions on it. Psychologists have all sorts of tests up their sleeves. They have tests that try to trick you by asking the same questions repeatedly to see if you change your answers. They have tests to determine if you are faking your symptoms. I think it was one of those tests. There were statements that I was supposed to rate from “doesn’t bother me much”, to “bothers me a lot but I can stand it”, to “bothers me constantly and I can’t stand it!” The statements I was supposed to rate said things like, “I feel wobbly”. That’s the one I remember the most. I feel wobbly quite a bit, but I didn’t answer “I can’t stand it” to any of their questions. I can stand quite a bit. I hate the illness and all of its nasty symptoms. But to say “I can’t stand it” with an exclamation point is just nothing that is part of my vocabulary. What I really can’t stand is psychologists with their superior attitudes, ginormous egos, and tricky questions.

At the end she says, “I’ve asked all of the questions the Social Security Administration wants me to ask. Is there anything you think I have missed?”

“I really don’t like this,” I said. “The Social Security process is a game that I am tired of playing”. She wanted me to tell her what I meant by game. Of course.

“I’ve been through this process before, I’ve had well qualified doctors declare me disabled and have submitted paperwork, I’ve jumped through all the hoops only to be continually denied”. I replied. It was probably the most revealing thing I said in the whole interview. Well, that and the “asshole president” remark.

I could tell that she was purposely keeping her distance, as her job was to evaluate, not to be compassionate. She softened for a moment. “You just have to keep at it,” she said.

I softened for a moment also. “Thanks for putting up with my irritability.”

As she opened the door permitting to exit, she replied, “It comes with the territory”.

These things

This is a post about the things I want to be doing. I can no longer endure the monotony of my life. I want to engage with life again. I want to go back to work.

I want to update my resume. I’ve been off of work on disability for four years now. I feel that returning to work will be instrumental in my healing. I’m not using my gifts, and I’m not expressing myself and the result is a slow and painful death of the soul.

I want to start painting. I’ve wanted to do this for a long time. It doesn’t make sense. Why do I resist doing the one thing I know will bring me joy and peace?

I want to change my diet. I want to follow some kind of diet plan designed to promote health. I want to eat a lot more vegetables. I want to stop eating sugar and white processed foods.

I want to exercise. I take my dogs on little walks now but I want to do something that feels like structured exercise. I want to walk fast, or use a treadmill, or lift weights. I want to feel strong and I want to produce adrenaline.

I want to meditate every day. Even if it is only for 5 minutes.

I want to do yoga everyday, even if it is just a few poses, even if it just a few restorative poses.

I want to de-clutter. I want to get rid of things I’m not using or that I don’t need.

I want to journal every day, even if it is only a few words.

What do you want to do?

 

I am woman, hear me whimper

It’s impossible to escape the theme in our society right now regarding sexual abuse. I’m perturbed by the hypocrisy of it all. I’m troubled that anyone who makes a claim is considered legitimate. I’m annoyed that the person who has branded herself the creator of this “movement” is not a heroine but a very troubled person who is becoming more manic everyday. I’m tired of people branding themselves as victims and then claiming that as identity.

I’m disturbed that society seems to think that removing people like Weinstein, Spacey and Lauer from their jobs makes us a better society. I’m irked that these men are the sacrificial lambs for the elected official who began this dialogue. I’m irritated that we are going back to the days of pitting women against men, declaring men evil, especially if they have sexual desires and make them known. We’ve done this already. Helen Reddy, Billy Jean King, Nine to Five.

Maybe what I’m really pissed about are the memories from my own childhood. I’m five-years-old with a young woman who is 13 and entering puberty. We are in a small room under the peak of our house in my bedroom, the place I called my “cubby hole”. She is naked and showing me her body, asking me to admire it. She shows her growing breasts to me, tells me to touch them and put my mouth on them. Years later in therapy I would finally learn that a five-year-old does not initiate these types of activities. Decades later I would finally understand that the faceless young woman in the cubby hole was my sister.

By then I understood that being touched like that
was just part of life. Being “special”, and “cute”
came at a price. It was an exchange
that would inform the rest of my life.

Or maybe I’m angry about the school bus driver in second grade. I was one of his “special” girls. Several times per week I was given the privilege of opening and closing the bus door. Grasp handle, turn it one way to open it, turn it the other way to close it. It was 1971 and girls were required to wear dresses to school. While I stood next to the school bus driver opening and closing the door he would put his hand up under my dress and fondle me. I never told anyone. By then I understood that being touched like that was just part of life. Being “special”, and “cute” came at a price. It was an exchange that would inform the rest of my life.

So excuse me if I say that the #metoo and #timesup phrases mean nothing to me. I do not sleep better at night knowing that Kevin Spacey will no longer be in the White House. I do not wake up comforted by the absence of Matt Lauer on Today. My life is not better because the Golden Globes were monochromatic.

Real change comes from authenticity and not self-aggrandizement. Sacrificial gestures in entertainment do not translate into actual gains in society. Hashtags are not symbolic of movement, but of reactivity. Reactivity is avoidance of personal responsibility.

Is this all in my head?

I’m all caught up in worrying. I think I am paranoid. I start thinking that certain people are plotting against me. I’m always waiting for the time when I find out that the root of my illness turns out to be worst than I ever expected. Today I’m worried about my healthcare providers and what they might be thinking about me. I know that it’s possible and likely probable that they have not given me a second thought.

I’m imagining that I come across as someone who is obsessed with their symptoms. I’m worried that they think I am a head case. I’m worried that I might be a head case.

This most recent journey into paranoia began right before Christmas when the rheumatologist wrote in his note that Amyloidosis was a potential diagnosis given the symptoms I have. Then one of the tests he ran came up with a result that also fell into the Amyloidosis category. Even though I knew it wasn’t the most likely diagnosis, I couldn’t let go of it. I began thinking I’d better start preparing to die.

Ever since I gave up hope of returning to wellness, I’ve often wondered if this was going to end in death. I chastise myself for thinking that. I call myself overdramatic and a hypochondriac.

Right around the time I received all of that information I also started going to a pain support group. Well, it was more of a class. The premise of the group was for the participants to learn that our pain was coming from our brains, not our bodies. I met with the social worker leading the group. She shared her theory with me that people with chronic pain have unresolved childhood trauma. I agree that there could be a correlation. I told her I had recently been diagnosed with an autoimmune disorder. She said all pain is the same. It doesn’t matter what the diagnosis is. It’s not the disease causing inflammation and pain. It’s the brain.

As the group went on I found myself irritated with her presentations. Especially when she presented her ideas as facts with little science to back things up. For instance, she asserted that all pain is the same. All pain is caused by the brain. The body has an injury that causes pain, the brain takes over and makes the pain chronic because it is trying to protect the body. Diagnostic tests such as MRI’s are useless because everyone has changes on MRI’s as a result of the aging process. Each time I would find myself offended at the idea that my brain was creating my disease. It felt like the “blame the patient” mentality I’ve seen from providers in our current health system.

Any time someone would question her theories she would suggest that they needed to have an open mind. I told her I thought she was biased because she had never experienced chronic pain. I questioned the scientific validity of her assertions. She would say things like, “I really believe in this stuff!”. She brought in a doctor who was a former pain management physician who told us that interventions such as steroid injections are only done because they fatten the doctors wallet. When I told her that I thought my former doctors at the pain management clinic at Stanford might disagree with her theories, she told me that doctors don’t understand “modern pain science”.

Eventually I stopped going to the group. But the feelings persist.

You know those traps they set in the jungle floor to catch things? Think Indiana Jones. I feel like I’ve fallen into one. I can see out but I can’t escape. I alternate between trying to claw myself out by climbing the walls, or lying hopeless on the floor exhausted, watching as the world moves on without me.

Anger and Frustration

Lately, this is all I’ve been feeling.

Yesterday I had my third visit with my NP who is my PCP. The first visit was a total bust, and I considered looking for another provider. But then I started telling myself that maybe she is just stressed, maybe the system is just working her over. She is so distant and removed. When I tell her things I just get blank stares while she types away at the computer. Yesterday I was concerned that my thyroid levels were off again.

I had a total thyroidectomy four years ago. Since that time my thyroid levels have fluctuated wildly. I have been hypothyroid or hyperthyroid so many times that I recognize the symptoms when they occur. I do best when my TSH is about 1.2. If it is lower than 1.0 or higher than 1.75 I have symptoms. The symptoms are severe and the worst part of it is that it makes me feel crazy. Mentally, it drags me to the depths of the most severe depression I’ve ever experienced. Anxiety becomes so intense that it is incapacitating. My ability to concentrate is severely diminished. I can’t concentrate long enough to complete very simple tasks. I could go on. I also have Sjogren’s, which has its own set of symptoms that often overlap with the thyroid symptoms.

I was told about four weeks after my thyroidectomy by a well-qualified endocrinologist that my dose of Synthroid would be 88 mcg. Different doctors had different opinions. I tried Armor Thyroid for a while. My PCP claimed my Endocrinologist (another highly qualified professional) was overdosing me on thyroid medicine. When I asked him about it he said, “I’ve been doing this for 50 years. A lot of PCP’s don’t know to treat thyroid disorders.” Several weeks later I had a TSH of .01, which is extremely hyperthyroid. I went back to Synthroid and for the first couple of years it took about 137 mcg of Synthroid to achieve stability. For some reason now it takes about 175 mcg. I ended up hypothyroid again in mid November when my dosage was increased again.

What really has me ticked off is her note on the visit. The hospital system has electronic charting, so that you can go in and read your medical records. In her notes about the visit, she writes:

Acquired hypothyroidism

Last reassessment of TSH was WNL. Pt states that she is feeling down and becomes easily agitated and reports “brain fog” pt believes that her thyroid levels are not WNL. Will recheck thyroid. Pt had not started wellbutrin at last visit and still has not started medication. Pt states that she does not believe that her agitation or down mood is related to her anxiety and depression at this time.

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I never said “brain fog”. I specifically avoid this term because in the medical profession its seen as a wacko term. I told her that I was signing a form and forgot how to write my own signature. It was like my hand wasn’t cooperating with my brain. I also never said I didn’t believe my thyroid levels were not WNL. I simply asked her to check them. I already take an antidepressant that works when my thyroid levels are normal.

Another thing that is going on in the background is that my Rheumatologist has suggested the possibility of an additional diagnosis. It’s been weighing heavily on me because most people do not survive it. So I alternate between thinking that I might be having symptoms from thyroid, or Sjogren’s or that this is just the new normal. If its Sjogren’s steroids will help. If an adjustment of Synthroid is needed that will help. If this is the new normal then I need to know that too.

I hate feeling like I have to fight for things that are actually indicated given the symptoms and clinical picture. I hate being mischaracterized, especially in a medical record that every doctor I see from here on out has access too. Her biased opinion becomes the reason that the next doctor considers me invalid before he/she has even entered the exam room. I hate feeling dismissed or perhaps worse, written off as a hypochondriac who doesn’t “believe” in lab results. And finally, I resent this provider’s continual insistence that my physical symptoms are being caused by anxiety and depression instead of the diagnoses that are well documented in my medical record.