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So how can the lizard claim to be sick and yet hike 12 miles?

Ah, gentle reader, good question. I am delighted that you care.

I am having a fast twitch muscle problem.

I have been reading about muscles. There are slow twitch muscles and fast twitch muscles. The fast twitch muscles break down into fast twitch fatigable and fast twitch fatigue-resistant. The fast twitch fatigable are part of the fight or flight system and run partly on adrenalin.

Now, back to the PANDAS, my antibody disorder. The NIMH website says that the antibodies are thought to attack the basal ganglia, but either they are wrong, or mine is a variation. Anyhow, I think my antibodies to strep A attack my adrenalin system. The website says that a PANDAS attack can be triggered by other infections than strep A. The immune system ramps up to fight an infection and it must dump out lots of different antibodies.

So with the bad PANDAS attacks that I've had, my heart rate jumps from its normal 65-70 to a baseline of 100 and then jumps to 120-130 when I walk across a room. Normal heart rate is 60-100 and 120-130 is exhausting. It feels like I am running a marathon, like I am on super caffeine, like I am on amphetamines or meth. Well, if the antibodies attach and trigger my own adrenalin system, it is as if I have my own personal amphetamines. I do not like it at all.

There I am with a heart rate of 100 lying still AND wired. Because the adrenalin fight or flight system makes you speeded up, anxious, hypervigilent, speeds your thoughts, and then at the end of the day I would cry out of exhaustion. I have had four bad PANDAS attacks. Mononucleosis at age 19, influenza in 2003, strep A pneumonia and sepsis in 2012 and again strep A pneumonia and sepsis in 2014.

I had abnormal lung testing in September, after the infection starting in early June. Retesting last week, my lung function has improved so there is less of an obstructive componant. Obstructive lung disorders include emphysema, COPD, asthma, pulmonary fibrosis and then various weird arcane rare things. I am thankful that after three bad pneumonias I don't have much lung scarring. I was worried about that because that is one of the causes of pulmonary fibrosis and it does not get better.

My muscles are still whacked, though, and it's been five months. The other three times I dropped 8-10 pounds in the first week (amphetamines do that, right? So do continuous adrenalin-like antibodies.) This time I dropped 10 pounds in the first week and have only gained two back. If I use fast twitch muscles then they hurt, feel week and feel trembly or twitchy for at least two days. They also hurt. Talking triggers it, so my vocal cords and lungs have been worst. Oh, and when the antibodies were high, heart too. Ow. Chest pain*.

But the antibodies are down to normal so why aren't I better? Here I go into theoretical mode. An analogy: the U of WA Pain and Addiction clinic says that cells bathed in opiates continuously withdraw their opiate receptors. They also "trim their dendrites", that is, their connections to other cells in the brain. The UW is worried that the latter problem is permanent.... oh, dear. Opiates permanently changing the brain? Shee-it! Anyhow, the withdrawal of the opiate receptors is part of why patients tend to need more opiates as time goes on. Also why I say get off the opiates as soon as possible.

Anyhow, my theory is that my cells have also withdrawn their receptors, but it's the adrenalin receptors. So, if my fast twitch muscles have very few receptors, they would wear out really really quickly. I tried to return to work five weeks after June 3rd. We spaced the four patients a day one per hour and I still got hoarse and exhausted.

Non functioning fast twitch means I can't bike, swim, run or ski. Or talk for long. Breathing hurts much of the time, but I find that it is necessary.

Functioning slow twitch means I can hike, slowly. Short of breath on little hills. I can dance, slowly. I can sing, especially sustained things. I did Rutter's Pie Jesu solo in a concert in July and again in August. Cough, cough, cough..... sustained notes, no problem. Weird, weird, weird.

I described this to my favorite neurologist and he tried to send me to the muscular dystrophy clinic bypassing him. The muscular dystrophy clinic refused, so I have to be tested for myasthenia gravis and have an emg first, even though Dr. Neurologist says that the emg can't distinguish slow versus fast twitch. Ok, so whatever. Jump through the medical hoops. I have never wanted to be an "interesting case" but I guess that I am rather stuck with it.

I go to sleep on nights that I have talked too much at 8 pm or 7 pm or 6 pm. I am just exhausted and my chest aches to beat the band. Good that I am a singer and a flute player and a swimmer and did zen buddhist meditation for 4 years in and after college: lots of breath training. It is coming in very handy.

And that's the news from lizard land, where all of the lizards are devious, vicious and above average.

slow and fast twitch muscles
NIMH PANDAS website
The NIMH website says that pandas affects children only. However, that apparently is only in the United States medical "system". In Canada or Europe, adults have it too. How special, to have a disorder that I am not allowed to have in my home nation, only abroad.
*I am not taking pain meds. Except an occasional beer. I would rather use an addictive substance that tastes good if I am going to use one, with appropriate caution. Pot makes my lungs hurt, yuk, way back in college.

Above the table there is a picture of a table with two pitchers.

One of the pitchers in the picture is empty and the other is full.

Above the table in the picture there is a picture frame that is empty.

Two houses down the street, where the table was found, a black and white cat lingers.

Below the table once our knees touched twice.

One of the cat's paws is missing although the cat pays no mind, having been born without.

Below the table, a bagel crumb marks the spot where Art offered Dee a sign.

Today we took the girls to a Korean restaurant located on the East Side of Milwaukee. Being down there reminded me of college. We would frequently go down to the lakefront late at night and hang out there. I drove because I had a car and it didn't occur to me to ask for gas money from my friends who wanted to go. After I had driven them back to school I would have to drive myself back home. I didn't mind driving, I am fond of driving when I can be alone in the car at night, but looking back I can see that the people who wanted me to drive were using me to transport them without me getting anything for my troubles. It might have been different if they had done other things for me, but they didn't and now I can see that I should have explained that my car didn't run for free so if they could chip in for a tank of gas every once in a while, or pay for my meal when we went out, then I could continue conveying them wherever they wanted to go.

I hated being in college. I worked very hard out of school and I was constantly anxious while I was in school. I didn't wear the right clothes or do my hair the right way. I was very poor and felt as if others had more money than I did. This was probably not really the case, but that's how I felt. Lost, out of place, stuck in a small school where the views were narrow and the hijinks were immature. Last night I met up with some friends of mine, and by a strange coincidence three of the four of us had history degrees. It was fun talking to the guy who now does history podcasts for a living. My career took a different path so today I logged on to Twitter to find that a friend of mine who has had inexplicable back pain since she was eight was advised to try switching her footwear to see if that would help. While footwear can often relieve back pain if it fits well and is supportive enough, shoes are not a miracle cure. 

While we were out we stopped at the Vietnamese grocery store. I like taking the girls to places like that so they get exposed to other cultures and different groups of people. When we were walking back to our vehicle after lunch we saw some other restaurants that we would like to try. I get tired of the chain restaurants and would rather see the money go to local places so next time we want to go out to eat we're going to head back down to that street to revisit our other options. The other day I was talking to a friend of mine about something he said a couple years ago. He feels badly about what happened and has been writing to people to apologize. He is a quite a bit younger than myself which makes me feel very small since there are countless things I have done over the years that I have not apologized for, and that brings me to today's list which is things I am sorry for and deeply regret:

 

1. Getting married with the thought that I could just get divorced if things didn't work out. That was unbelievably immature and I could write pages about why this was a horrible thing to do to someone else. My grandmother and my mother told me not to get married (for reasons of their own) and now my mom is taking back what she said, however I was an adult and the main reason I got married was because I didn't have much money and I felt like that was easier than moving in with either of my parents or going out on my own.

2. Having children when I knew that my marriage was not good. I don't regret the pregnancies or the raising of my children, but if you are going to bring a child into the world you owe that new life the best that you can provide, and you're not a good parent if you're as selfish as I was when I first had children. I've learned some of these lessons the hard way, and would urge anyone who is considering becoming a parent to take parenting classes, and to get on the same page with your partner before you go ahead with this monumental decision.

3. Refusing to compromise (when I should have). There are times when sticking to your guns is a great thing. There are also times when giving up a bit of ground in one area means you gain in another. Negotiation and compromise go hand in hand and refer back to items one and two. I should have been more willing to listen to my partner and yielded over certain things that didn't really matter in the grand scheme of things.

4. Taking most of the jobs that I have. I should have held out for more and gone after bigger and better. But I didn't believe in myself and wasn't aware of what my true value was. I felt grateful to have been hired in the first place and worked very hard to try and keep the jobs that I had been hired to do. I was largely powerless when they kept heaping demands on me that were inconsistent with the duties I had been hired to perform and I had to learn that sometimes being too good at your job is a liability for you instead of an asset.

5. Not quitting sucky jobs sooner. I should have walked away from some of the jobs I've held much sooner, but again, I felt like I needed the money, or I had other reasons like health insurance chaining me to a position at a particular company. Some jobs I should have kept and stuck with, but most of the jobs I've had I shouldn't have taken and should have left as soon as I realized that I had been hired to do marketing, but in reality I was stuck in a cube entering tax data.

6. Gossiping. It took me a long time to realize that I fed off of gossip. It seemed like we were talking about people and trying to understand things, and I still have something of a problem when a conversation turns to other people. People need to vent, but that's not the same thing as deliberately sitting there and shredding someone else. Also, I have deep and unresolved hatred towards some so there is nothing nice I can say about them which means I should not be saying anything at all.

7. Hearing without listening. I'm working on this and I'm happy to report that I am very slowly becoming a better listener. It's very annoying to be in a group of people and not be asked questions or really included in the conversation, however, I'm now able to sit back and try to put myself in the shoes of other people (and to remember that they aren't good listeners when I get invited to hang out with them). Good listening is such a rare skill, and I'm doing my best to cultivate this in myself so I can model it for my children.

8. Having low self esteem. It's not okay to have low self esteem and not do anything about it. This was another problem that I strugged with for a very long time. Now I go to therapy and the chiropractor and read about ways to boost my self confidence, but for many years I was in a funk and didn't do much about it. The library is a great resource, there are fabulous articles online, talking to friends can help and so can small things like taking walks and even putting in a load of laundry when you don't feel like it can help overcome that wave of inertia and paralyzing helplessness I struggled with for so long.

9. Not writing more about how I feel. I need to vent and to get things off of my chest. And then I need to let whatever it is that I can't control go for good. There's a couple of people that I am really upset with, and some of these conflicts go back years. I don't know if anyone else needs to be reading what went down, but I need to write about how I felt when I was involved with these other people or in certain situations and then I need to light a match to those papers and watch that rage go up in smoke.

10. I'm sorry that I haven't been more thankful for the incredible people I call friends, and for the countless things that could have gone wrong, but didn't. Every day is a gift. Every minute we have choices to make about what we are saying to ourselves. There are definitely things that I should be angry about, but I also need to step back and say, hey, I have an abundance of food. I have a closet full of clothes. I write well. I'm extremely talented. I do not need your pity or anyone else's. Money is just another commodity. Sometimes there's less while other times I have more. I am not my possessions, nor does a lack of them or health, or anything else define me.

 

There, I got through that list and I feel much better now. It's funny how in the past I've wanted to be a list person, yet always shied away from them when it came to enumerating tasks or groceries. I didn't know that I could use lists this way and in light of number ten, I'm grateful for my friend Nathan who encourages people to journal and for my therapist who is always telling me that I need to write to process things. I'm very tired, but at least now this is behind me and it was so gratifying to see my girls eating rice mixed with vegetables at that restaurant. We had a nice sit down family style meal and that's another thing I'm thankful for as we don't often have times like that together. Grocery shopping is largely done and we saved quite a bit by going to the Vietnamese store which helped me work on my goal of spending less on food and buying fewer prepackaged items. We had a new experience, we stopped at the store when we were already out instead of making a special trip, and the fridge is full of things like chicken feet, garlic, and the fresh ginger that seems to be available only at Asian grocery stores. I'm excited about my new cookbook Ancient Wisdom, Mondern Kitchen, and can't wait until our fridge is full of things the girls can take to school that aren't peanut butter and jelly sandwiches.

Until next time,

Jess 

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