Little Bits Of Weirdness

I am always intrigued by the little bits of weirdness that come with the whole schizophrenia thing. 

For instance: a couple days ago I learned that most people cannot tickle themselves. I was reading an article about a study on what causes auditory hallucinations in schizophrenia (STAT: Health) and it just throws out the statement "Even the most ticklish person in the world cannot tickle themselves." I was absolutely dumbfounded by this statement. I just sat there for probably 10 minutes with my brain did a "WTF?!" Then I asked my parents if they can tickle themselves and I got a couple of puzzled looks. Yeah, apparently not. 

So I looked it up. Britannica has an article titled "Why Can't You Tickle Yourself" and it is an interesting read. 

The reason you can't tickle yourself is that when you move a part of your own body, a part of your brain monitors the movement and anticipates the sensations that it will cause. 

Now the reason I was so confused is that I can tickle myself, both inadvertently and on purpose. Just now I tickled my leg just for the hell of it and yep, it tickled. So what is going on? I found another article, this one titled "Can People With Schizophrenia Tickle Themselves?" And it added this bit of info: 

Most people cannot tickle themselves. However, some individuals with schizophrenia may be able to do so, possibly because they are less aware of the consequences of their movements.

So, weird, right? How have I reached the overripe age of 52 without knowing that the whole tickling myself thing was a symptom of my mental illness? It is baffling to be sure. 

Part of my "And More"

Part of my "And More" is a messed up immune system. I have what is called PIDD (Primary Immunodeficiency Disease) and I need to support my immune system by doing weekly infusions of a serum made from the plasma donated by healthy individuals. 

If you donate plasma, thank you. People like me depend on these serums to survive. You are a hero.

My infusion supplies.

My infusion is my least favorite part of the week. It is done subcutaneously - inserted into the fatty layers under the skin - and takes a bit over an hour. Basically I put 4 1/2-inch needles into my abdomen or thighs and push the fluid in using a pump. It doesn't really hurt, but it stings. It is unpleasant, but not horrible. But I still strongly dislike the experience.

This past week I had my 3-month follow-up with my immunologist and I learned something pretty awesome. I knew the infusions helped support my immune system so I can better fight off infections. But I learned that the serum not only has healthy immune cells but it also carries the vaccinations that the plasma donors has received. So if the donors got the Covid vaccines, a tetanus shot, a measles vaccine, and a pneumonia vaccine, I am covered. Which is awesome because my body doesn't hold on to antibodies like it is supposed to. The only thing I don't get is the seasonal antibodies like the flu vaccine because the process of making the serum takes up to a year. But I am still well covered. 

Yay!!

It is nice to get some good news for a change.

Oh, and some interesting info: Several studies in Europe have indicated that brain disorders such as Schizophrenia might have a causal link to immune disorders. Something to do with the inflammation the immune disorders cause in areas of the spinal cord and brain. I'll see if I can find the paper I read on it. I didn't understand it all because Dammit, Jim, I am a geologist, not a neuroscientist, but I got the gist of it. 

One Step At A Time

So. I haven't even looked at my blog in years. Let's see if I can get myself going again. 

Cute Sophia pic for interest

I have been lost in the negative symptoms of schizophrenia. This means I have no energy, no oomph, and tend to fade into a dissociative state if I don't be careful. I can get lost in Social Media or a computer game for hours with no way to get myself to stop. I am even on Instagram or Facebook while I'm watching TV because unless it is a very intense show it is just not enough to keep my interest. And if I can't stay interested I tend to fidget: I pick at my skin, try to pull out my eyebrows, scratch at my scalp, etc. I have barely kept myself from cutting to distract my brain from the anxiety that just won't go away. 

I know that the main reason I can't get my anxiety under control is that I switched medications. I was on Clonazepam (a benzodiazepine) for years and it did a great job of keeping things under control. Then my psychiatrist died - I am still in mourning - and the new doc doesn't like using benzos. There is a good reason for that, but it was still hard to hear. I decided to go off of it and I learned the hard way the difference between a medication that is habit forming and one that is addictive. Going of the Clonazepam was the hardest thing I ever did. The withdrawal was horrible and it took months to slowly wean off of it. 

I am now on Propranolol (a beta blocker) for my anxiety and it works, but not very well. My baseline is higher than it was on the clonazepam and I just can't seem to function. I am just agitated all the time and no amount of calming breaths or anti-stress yoga can get rid of it. I am paralyzed. It's all I can do to just get up and feed myself. Even the simplest of task can take days for me to get into the mindset to get it done. And the negative thoughts are just a constant. They only time I get peace is when I listen to my music. The metal music drowns it out. This is no way to live. 

I was going to write something profound about September being Suicide Awareness Month, but I am just too close to the edge myself. I am just trying to keep myself distracted from the negative with cute cat posts and cooking videos. I am just a lost ball of anxiety trying to keep going.  

The Fog Is Lifting

Two months ago I made some changes to my dietary supplements. I was dutifully taking a multivitamin and supplement of B vitamins and Iron. But I was still anemic and my energy levels were low. Basically, thing didn't change. I have always bordered on anemic and with my psych meds and my depression, my energy levels have always been iffy. Unless I was in a manic phase, I just had no oomph to do anything. 

A friend of mine showed me an article on supplements and absorption and it made perfect sense to me. I took it to my doctor and he confirmed that it was likely that I wasn't absorbing much of the supplements. The hard processed cocktail of chemicals was doing me no good at all. It was time for a change. 

As much as I can, I have switched to whole food supplement or vitamins that dissolve in the mouth. And wow, has it made a difference. I ditched the multivitamin all together. I am now taking an iron supplement that is in a capsule called Gentle Iron and it dissolves quickly instead of the slow iron that dissolves slowly, or not at all. My B supplement is a chewable tablet. My Vitamin D3 is now a gel capsule. Just making those changes has made a huge difference. 

After a month of being on the new supplements, I added a few more. I am taking Turmeric with Ginger in capsule form. These are supposed to reduce inflammation - something I need desperately - and they are gentler on the system than Ibuprofen or Aleve. I haven't been on them long enough to tell if they are really working, but nothing bad has happened so I'll stay the course. I also added a specific Omega-3 supplement that was mentioned in an article on dietary needs for those with mental illness: Nutritional therapies for mental disorders. It is called VegEPA and it has fish oil and Evening Primrose oil. It is supposed to help the damaged parts of the brain work better. My final addition was a supplement from a company called Host Defense that uses mushrooms that are shown to help the brain and other parts of the body function better. The one I chose was Stress Decompress. 

The change has been remarkable. One of the frustrating things about Schizophrenia is that the anti-psychotic medications help with the hallucinations, delusions, and paranoia, but they do nothing for the dissociation and lack of concentration. Well, something in my new cocktail is working because I have actually had the energy and interest to do things. I started some rehab on my indoor garden and I have started a gardening blog to document what I am doing. I have written 5 entries in the past 2 weeks. I am reading books. I am cleaning. I am actually doing things. It feels wonderful. 

This mixture of supplements won't work for everyone. Talk to your doctor first. But it is something to consider. Also, if you want to know more about the mushroom supplements, there is an awesome documentary on Netflix that got me into fungi. If is called Fantastic Fungi and the brand of supplement I use - Host Defense - was started my the mycologist featured in the show. Even if you don't want to get into taking mushrooms for your health, it is still a great watch. 

Things are changing. I am feeling better than I have years. Fingers crossed that it continues. 

Fighting The Pain

Chronic pain is probably the biggest stressor in my life. I have had it so long that I tend to block it out, but it still wears me down. I often don't realize how bad it has gotten until I cannot sleep. Then it is past time for a visit to the pain clinic. 

Most of my severe pain is caused by osteoarthritis, which is something that is hard to treat successfully. My two worst areas - my left shoulder and my neck - have been treated in the past by steroid injections every 6 months or so. My neck pain, which is cause by arthritis and bone spurs, finally got bad enough that my pain specialist recommended radiofrequency ablation of some of the nerves. Both of my parents have had it done and report good results and my specialist said it should provide relief for a year or more. 

Of course, they can't just go ahead and do the procedure. Any and all insurance companies require tests to be sure the procedure will work. So first they go in and inject lidocaine in the affected areas and I spend the day tracking how much relief I get and for how long. If the relief is 80% or more for at least three hours - which I got - then they do a second test. This time a stronger local pain medication is injected (I can't remember what it is called) and I again track how much relief I get. This one was also successful so we scheduled the ablation. Now, these two tests need to be to weeks apart. So I get the lidocaine, I get a couple hours relief, then I hurt like crazy for two weeks. Fortunately we were able to schedule the ablation just three days after the second test. 

For the procedure itself I for the first time decided to be sedated. Usually I just deal with the needles. But burning nerves sounded sufficiently scary that I wanted to be doped up. Unfortunately I wasn't dopey enough. I had to use a different doctor for the procedure than I usually use because I could only have it done on days my dad was off work. Obviously I couldn't drive myself. I also found out the day of that they would only do one side that day and the other side would be done in two weeks (what is it with two weeks?). The doctor was OK, but he didn't communicate with  me like my usual doctor does. The needles/probes need to go into four spaces between vertebrae on each side and it took the new doc forever to get the correct spots. He ended up calling in nurses to pull my shoulders down so he could get to the bottom one. After all the shifting and poking, the actual ablation was nothing. And the sedation was light enough that I was almost immediately able to get dressed and leave. 

Since then I have been in hell. The left side of my neck is a bit sore, but feels a lot better. Hooray for ablation and steroids. But by comparison my right side is absolutely killing me. I have been unable to bock the pain so I am wearing lidocaine patches and using diclofenac gel. As bad as the procedure was, I cannot wait to get the right side done so I am no longer lopsided. And I have made a note to make sure that I always use the doctor I am used to. 

While I wait, I am unable to wear any of my racerback bras because they pull on my neck and make the pain unbearable. And no matter what, my neck is agony by the end of the day. I plump up my pillow and lie down and just let my neck rest. 

One more week.