Dear Friend,
Imagine running into you again! It's been more than a month since I've posted and way too much has happened for me to catch you up.
I really thought I was right on the threshold of getting everything going. In fact, I was planning my farewell entry. Then life kind of fell apart again. We went on vacation to the Bahamas. There is nothing to do in the Bahamas unless you are on or in the water. But that worked it because we were so tired we really wanted to eat, sleep, and read. So we had one full expedition day (got to swim with nurse sharks!) and then really rested up. Four hour naps in the afternoon! But the trip back was long and hard and tedious. Lasted ten hours. Somewhere along the way it must have been too much for my fascia because I was in so much pain I couldn't sleep for a couple of days. Things got better and then I decided to start getting into the pool and just gently moving and swimming .... and I tore my fascia u again and wound u in a lot of pain.
So, here is where I am.
- I no longer have ANY environmental allergies, I used to have 23
- I only have 12 food allergies, when it had been 52
- this indicates that my leaky gut is healed and my immune system is healing.
- both my sympathetic and parasympathetic nerve systems are fine, the problem is just in keeping them connected. That's done by drinking all the water and eating all the salt, saline infusions when needed, and activity.
- I learned that the Ehlers-Danlos Syndrome makes all of my fascia defective, everywhere in my body and that's why it tears. But, more than that, being defective causes it to become kind of sticky to muscles can't move smoothly. It ALS forms adhesions to itself, to nerves, blood vessels, and everything else, so, I'm guessing that the pain I have is from ripping apart those adhesions all over and through my body.
So, I got busy and found a group of physical therapists with clinics in Manhattan and where I live and they know all about Ehlers-Danlos! The main guy I talked to when I just dropped in understood what I meant when I said I'd be in physical therapy virtually all the time, just as one thing tears o slips out of place. The therapy consists of strengthening the muscles, making the tendons and ligaments more sturdy and less likely to tear, and increases the suppleness of the fascia. I have my first appointment with them next week,
I also found a licensed massage therapist who knows how to do myofascial release massage therapy. This is going to have to become a routine part of my life. It's the painful type of massage! She is tearing the adhesions, tearing the fascia off of the muscles it's has bound itself too, and stretching it to make it move smoothly.
So, that's all good. My doctor is trying to find a functional medicine or naturopath rheumatologist for all of this.
Next thing is my sedimentation rate is normal. This means that my whole-body inflammation is down to normal. But, my C-Reactive Protein is still sky high, which means my cardiac system is still constantly inflamed. This may be because I have some strange disorder that is abbreviated MTHRFR. Use your imagination and you'll get a laugh. I don't understand this yet, but it means that one or more genes are defective and I can't make something or other to take care of something or other so I'm riding high on risking a stroke or heart attack. She will be doing the blood work next week to send off to find out about this.
My protein levels are low, which is indicative of something pretty big being messed up. Like liver problems or celiac disease or kidney problem. The neurologist did a screening test that indicates I don't have celiac, but the only definite diagnosis is through a biopsy
The neurologist referred me to a nephrologist who he tight would be the right person for me to see about my kidneys. Me have not set up this appointment yet, though.
I am slowly getting off of the beta blockers that I've been on for almost three years to control the tachycardia. I'm currently taking only one every other day.
I do have a lot of heavy metals in my body, in pudding uranium! Isn't that bizarre? I'm going to need 8-12 treatments and can have up to three treatments each week. I have not scheduled the start of that yet, but it will probably be next week.
Well, that's all I can remember about the tests at the moment. Apparently getting off the beta blockers should help how I feel and the chelation should help a lot.
I'm really tired of all this. I just want to be well. I slipped on a piece of dog food today that crunched under my sandal and sent me flying. I fell on the floor pretty bad and wrenched my arm trying to grab the kitchen island. I am falling way too much! What is going on???
My psychologist thinks I may have ADD, though it's hard to distinguish between ADD and PTSD
I accompanied my daughter to Mississippi last week for her best friend's wedding. It was very hard because there are so many extremely painful memories there. I had to go to the church where all the awful stuff happened. The only person I saw who was involved in that was the pastor and his wife, but they acted super happy to see Mel. It's hard to stay mad at him because I think he was in way over his head. I think the woman who caused all of the problems was a sociopath and she manipulated him because he was very gullible. The people who hurt me the worst, though, I didn't see at all, and boy was I glad!
I bought a book about understanding the survival methods that children who experience childhood abuse adopt. It's like this guy knows me!! I've been dealing with heavy, long episodes of anxiety which are so hard to explain. Just imagine being very, very afraid ... for hours with no reason at all. I've always fought through these and refused to give in and take a Sanaa. But she told me that what is happening is that my body is remembering also. It's not just your mind that remembers things, YUR body does, too. So, apparently just being back I Mississippi caused my body to switch into anxiety and fear. It was a little better today.
The stuff with my brother got much, much, much worse. My husband took him on for two days on Facebook. I couldn't read it because I'd start shaking just holding the device. Unfortunately, my brother took down the entire post and no one took a picture of it. But after that he sent me a letter saying he wants to reconcile, but the way he wants to do it is to act like nothing at all happened. That's magical thinking and this isn't going to be resolved by sweeping it under a carpet..he can't get my hotmail emails, so I'm going to mall him a letter tomorrow. I desperately don't want to, but I have to remind myself that a brother is worth the trouble, a niece, however, is a different story!
Anyway, that pretty much catches you I with where I am and I'll just go in from here. I'm restarting the c ting with today being Day 1. It looks like I'll be accepted into the seminary as soon as they get ny transcript, the university couldn't find it because I completely forgot that I used my first name when I first started school back then. So they said they'd have it to the school by then,
What do you think the odds are that I can finish the basement before September?? Yea, me, neither
I have got to get way more sophisticated clothes! I see things I like, but then I see them on my middle-aged woman's body and despair! But there has to be a way to dress sophisticated and artsy and fashionable even if you're overweight
I've got yucky dirty work to do tomorrow. I think I'll make myself write my brother and stick it n the mail no matter a what. Have to start a dialogue somewhere. I pull away from conflict and run and hide
Our son and daughter are doing great and were doing good. I'm sad a lot, which it turns out is the set point got people with my form of survivals kills my psychologist hit the nail on the head this week when she said suddenly, "you believe you are unloveable." It went through me like a knife and hurt on so many levels because she nailed it right in the head,
Well, this is enough to catch you up. I do feel like I am approaching a break-through somehow. I hope you hang around and help me to not miss is!
Cheers!
Lisa
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