Friday, July 17, 2015

Day 1 - Well, hey, there!!

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

Tuesday, June 9, 2015

Day 13 - I HAVE SOME GOOD NEWS!!!

Dear Friends,

Well, my time to reboot my life is fast running out! But, that's okay.  I've restarted the countdown once before and may do so again.  

But, here's my good news.  The neurologist did a lot of blood tests which I had faxed to my doctor.  She went over them with me today and there were many things to celebrate.  One is that my sedimentation rate has gone way down, which means my inflammation level is lower.  All of my autoimmune markers were perfect.  I DONT have celiac disease.  And my IgG and IgE levels were NORMAL!!  That may mean that I don't have food allergies anymore!  To be sure, she is going to do a scratch test, but I have to be off all anti-histamines for a week before she does it.  She is thinking of doing chelation to get rid of the heavy metals in my blood, but wants to do a test on that before she does.  So she's doing a "challenge" test.  I was given an IV and then collected all urine for the next six hours.  If it comes back and I still have high levels of heavy metals, I'll go through chelation which will remove all of them from my blood.  

She wants me to take getting off the beta blockers a little slower than the neurologist said.  So, I'm taking only one a day now and should do that for up to a month, and then go to one every other day for a month or so before completely quitting them,  She says I'll feel a lot better when I am off of these.  And if I do still have high levels of metals in my blood, I'll feel better after having them removed.  

She wants to go up to higher doses of all the vitamins and minerals in the saline IVs I get from time to time.  

My C-Reactive Protein level was still at 10 (still dangerously high) but not any higher than it had been, even though I had been eating bread and butter with gusto for about a month before the test was taken.  

The other news was that I have gained twelve pounds since I moved here.  So, not good ... but not terrible, either.  

Oh, and she is doing blood work to find out what vaccines I have had.  Turns out that, if you lose your records, they can find out from your blood.  So I probably won't have to deal with getting booster shots or anything else.  And I think this testing satisfies NY requirements.  

So ... REALLY good news.  I'm very encouraged, and that's, like ... a first!

So, am I on my way to getting my life rebooted??  I think that I am.  This Whole30 program is going really well.  I'm still bloating a lot, but I can get into pants I wasn't being able to get into previously.  

Exercising every other day seems to be going well enough, but it am still scared of hurting myself by tearing a tendon again.  So, I remembered that the cardiologist at Vanderbilt wanted me to get cardiac conditioning, but no one in the area would do it unless you had had a heart attack.  Well, I did some checking briefly on the internet and I found a really good physical therapy place 24 minutes away that does it,  so, she wrote me prescriptions for physical therapy on my hips, fascia and shoulder and for cardiac conditioning as well.  So, this may really speed up the process of getting me fit again.  That would be so incredibly awesome!!

So, I think I'm on the right road at least.  

Cheers!
Lisa 

Monday, June 1, 2015

Day 22 - I'm Not Going to Make It, Am I?

Dear Friend,

I haven't posted for a while, have I?  I just haven't felt like talking.  I'm not going to take the time to go over what all has happened this week.  I'll just start with today.  I started The Whole30 Program today.  It's a thirty day diet to reset your whole body.  It's pretty strict: no dairy at all, no soy in any form, no legumes at all (except green beans, sugar snap peas and snow peas), no white potatoes, no sugar or artificial sweetener in any form, no sodas in any form, and ... hardest of all ... NO GRAINS OF ANY KIND!!  Oh, and no alcohol at  all.  The idea is to really clean out your body and break all psychological ties yu have with food.  Their thing is, "Give us 30 days."  Not 365 days, just 30 days of adhering to this protocol.  Some pretty outstanding testimonials.  Oh, and very little fruit.  So ... I'm going for it.  Not being able to have grains of ay kind is going to be the hardest part of it, for sure!  

I swam for twenty minutes Saturday.  Rested Monday.  And then did strength training today for twenty minutes.  I won't do anything tomorrow.  Trying to keep from tearing muscle fibers again.  I'm calling my doctor tomorrow to get an appointment so I can get a Rx to see a ohysical therapist.  The fascia in my outer thighs Sunday night was so tight I was very inhabited in taking strides.  

That's it for now.  

Cheers!
Lisa

Monday, May 25, 2015

Day 30 - Overdid It

Dear Friend, 

WHY must I get competitive with myself??  I walked 49 minutes in some pretty ht weather today just because I wanted to do more than I did yesterday.  I was exhausted by the uptime I got home!  

I'm starting yoga again tomorrow.  There is a class for beginners at 11:00 and I will be there.  I've decided I will do yoga each day followed by a twenty minute walk - ONLY - one day and by hip exercises the next.  I texted my husband while I was out shopping with my daughter, "What if it really happens this time?  What if we really lost weight and got fit?" He texted back, "Why not?" Like it's simple!  We haven't been successful before!  But I am making a decision.  I am worth the time it takes to make myself healthy.  

I got a cute pair of New Balance walking shoes today at a shop.  Looking forward to wearing them the next time I go out.  They should help my feet a lot.  

I caught an amazing sale on chicos.com on swimsuits.  Had $120 suits knocked down to $38! 

Well, I'm going down for the count.  

Cheers!
Lisa

Sunday, May 24, 2015

Day 31 - On the Verge of a Transformation

Dear Friend,  

After the commencement ceremony, I started climbing up the stairs to get to the hall in the big arena where we were.  The stairs were steep and narrow and there were no hand rails at all.  I was wearing some new navy sling back heels and the stairs were only as wide as my shoe was long.  So, if I put the top of my toe against the riser of the next stair, my narrow little heel barely fit on the edge of the step.  I realized I was in real table bat halfway up.  My legs and hips have gotten so weak and my heel was slipping off the edge of the step -- it was pretty bad.  I really thought I was going to fall!  I started reaching for the arms of the chairs bedside the stairs to pull myself up, and you can imagine that that didn't work out very well.  Some man noticed my predicament and asked me ifI could   use some help.  I gladly accepted it, but was so embarrassed I never looked up, so I didn't even see who it was.  I decided that this was ridiculous!  I ABSOLUTELY HAD TO START EXERCISING!  I still didn't know he I was ever going to make it happen, though.  

So, the next day I saw my psychologist.  One of the main things we talked about is my whole mindset that I am not worth the time.  I am a failure.  I don't deserve to take care of myself.  There is no time for me until I have everything else done, and that is never going to happen.  I berate myself and get very mad at myself over everything.  She asked me if I believed that was true, that I was not worth the time to take care of myself.  I said, yes!  Everything in me tells me that it is true.  Then she asked if I rationally thought it was true, and I said no, of course not. But it was a controlling belief.  

She said this kind of thinking is very common in survivors of chronic childhood abuse who have PTSD.  I had no value in my family other than keeping mom calm to protect my family.  When she would go into rages, it was my fault.  I had failed and our lives were unbearable.  When I kept her calm, and rational, then I was successful because I made her act and feel happy and moderately normal.  My worth was determined by how well I kept a raging  mentally ill person act.  Ths was an impossible task.  All I wanted was a happy mother who took care of her family and loved her husband and loved her children and fed us and washed the clothes and kept the house clean and loved her role in the home and made life beautiful and loving.  This was impossible and I was doomed to failure,  I hated myself when I failed.  My family suffered and it was my fault because I wasn't good enough and could impair her or keep her happy.  I was worthless.  

I apparently have never gotten past these feelings though my mother is no longer the focus of my unworthiness and failure.  That has branched out to many other things.  The glass tops of the patio table are dirty - I'm worthless.  The laundry isn't done.  I am not good enough.  And God help me if the kitchen isn't clean - I'm a failure.  The basement isn't unpacked - I don't deserve the time it would take to care for myself.  I told me doctor I just wanted to be done with this!  I I don't want my childhood to control me anymore,  I want to be free from it.  She said it isn't going to happen until I get free of all the distorted thinking.  I was so exhausted when we were finished that I slept in the car for an hour after our meeting.  She came outside to take care of me. 

So, that how day 31 ended.  But a lot of stray thoughts are coming together and are beginning to weave themselves into a different thinking that just may transfer my life.  Oh!  It will make such a huge difference if I can latch on to it and truly believe it,   Think the change in my life will be radicals.  But grassing it, pulling it all together and believing it is going to take work.  But I am excited for the first time and have hope for the first time.  

More tomorrow.  

Cheers!
Lisa

Day 39 - Commencement

Dear Friend,  

This is a post I wrote last Wednesday which was day 39.  I wrote it on my iPad while I attended our college graduation ceremony.  Here it is.  Some major stuff happened right after I wrote this.  

Lisa

Well, I am at my first commencement ceremony.  There was a prayer by a pastor of a church around here and, as he was praying for the graduates as they set out on their next section of the journey, I wanted to add "... and, as they return to their parents' home while looking for a job, please help everyone be patient and help the graduates find a job so mom and pop can get their house back to themselves!"

The is a big ceremony.  I don't know how many we are graduating, but this is the second ceremony and there are several hundreds of graduates.  My husband is the last person in the processional here, completely different from where he was before.  The students cheered as he went by!  He's already making a difference!  We don't have any place even close to being large enough to do this on campus, so we have to rent an arena in a nearby city.  

I tried on all my white pants yesterday finally.  None of them fit!!  Ten pounds will do that to you.  I'm just going to get some summer dresses.  The ones I wore last summer were already a few years old and looked pretty bad.  I don't think any of them are salvageable. Well ... one might be.  

You won't believe what I did yesterday!  I ordered SIX BRAS!!  Won't that be awesome if they felt which I think they will?  I don't think I've ever had that many bras before in my life.  Two half slips and three pairs of pantyhose.  Whoo hoo!!

Our vacation has been decided.  Were going to go to the Bahamas for nine nights!!  That should be wonderful.  Were not doing an all-inclusive.  We did that last summer and ate and drank waaay too much!

I haven't had any time to write to my brother or my niece yet. I still have to write my biography for the seminary and figure out what to do about my immunizations.  

My husband told me that this ceremony started at 2:00, so I was here by 1:30, unbelievably.  And then, it turned out that he had the time wrong and it started at 4:00!  So, I ate a lunch they provided, including a couple of cookies and potato chips, and went to bed bath and beyond FINALLY to return all the things I bought to get the bedroom ready for the conference back in March.  Couldn't find the receipt, of course.  And I apparently bought it with my American Express which I didn't have with me,  without it to show what I paid, they would take things back, but take 20% off.  That makes complete sense because they give t so many 20% off coupons so, if you can't provide proof of purchase, they're going to figure you bight it at a discount and now want to get full price back,  but I was sure disappointed. That means I have to get the Amex back from my daughter and come it here again.  I'm almost through with that massive a not of returns I had to make. I have to return Tim's robe to Nordstrom, the bed bath and beyond stuff, and two pairs of shoes to Lord & Taylor.  I have to have my Amex to return those shoes also.  WHY CAN I NOT HANG ON TO RECEIPTS???

Now this is exciting.  We are awarding some doctoral degrees and the students are getting hooded with these big long hoods.  Such a fine moment if you are in academics.  And, why would you want to be in any other life, I ask??!

So, I wanted to exercise yesterday.  I really did.  I just wanted to walk and the block once and do my hip exercises.  But ... I had to get things ready for a dinner last night and managed to out it off until it was too late.  Knowing I am almost certain to hurt myself when I workout and tear a tendon really hampers my desire to do so!! I'm wearing a nice dress I've had a few years.  It had gotten too big and I had almost given it away.  I'm glad I didn't now since it's one of the only things that fits!  

Well, the recessional is about to start, so I guess I'll say goodbye for now.   

Cheers!

Lisa

Thursday, May 14, 2015

Day 45 - Read the Email and Listened to the Voicemail and ... WOW!!!

Dear Friend,

Well, I had no cortisol to take early in the morning and, sure enough, it took me an hour and a half to wake up!  I picked up my prescription this evening, though, so hopefully tomorrow will go better.  

I'm real worried about my oldest dog, the one who's almost blind and almost deaf.  I think something's happened and that she is completely blind now.  She keeps running I to things, like walls and cabinets and chairs.   I'm down here right now and most of the lights are off and she just keeps walking and walking and bumping and bumping.  She's been here almost a year and we keep her in this kitchen/den/breakfast room area.  She's had this area down pretty well, but not anymore.  She's got a high-pitched very quiet whine sound going on.  I leave all the fluorescent lights on so she has some light, and I usually leave the light in the garage entrance on, but they're off right now.  She has several beds down here.  One by the water, one in the den and a really large one in the laundry room.  Sh started in there, but without that light on at the garage door she stopped and turned around.  Maybe it was just too dark.  I can't do anything at the moment because my husband has fallen asleep and his legs are on my lap and I know how tired he is.  I hope she's going to be okay.  She's been such a great dog, but I will say that cleaning up behind her constantly is not a bit of fun.  I may try keeping her in diapers more, but that tends to give her a rash.  Often, I take her outside, and after a while I pick her up and bring her back in.  And then five minutes later she pees on the floor.  

So, I saw my psychologist today.  I printed off all the stuff that went on on Facebook last week and printed off the email she sent, still without reading it.  And I took the phone that had her voicemail on it.  So I told her about the good thing that happened at church last week and how my heart had been so refreshed and I haven't been as discouraged or depressed this week.  We talked about the visit we had with our son and how much fun we had at my Mother's Day dinner and how things were going with my mom, since ... You know ... I'd been pretty creeped out.  

So, then I told her my niece's history first, and it's not a pretty one at all.  Then I read her all that she had written.  Then I told her that I wanted to listen to the voicemail and read the email with her.  She tried to talk me out of reading/listening to them at all.  But I told her that I was going to do it and I'd rather do it with her than by myself.  She asked me why I wanted to and I didn't have a real answer.  Just wanted to know what she said and evaluate the situation.  So, she agreed.  And ...I don't even know what to say.  I don't know how to describe it.  Such a warping of everything!  Just having an extreme temper tantrum with amazing rage and viciousness.  "Wow" is about all I can say.  She was completely irrational.  My doctor was surprised I think, and thanked me for letting her read and hear all of that because she understands now much better what I'm dealing with.  She said it was very irrational and she seemed to be a very disturbed young woman.  She asked me what I planned to do.  I told her I planned to write out a history of everything that had taken place and snail mail it to my brother.  She wanted to know why I wouldn't just leave it and not respond so I didn't open myself back up to them to attack again.  I said I wanted to try, just try, to see if I could make them see things rationally, at least for a few minutes.  And then I would say that I'm done.  I'm really solid now on realizing that I get to choose who I give access to my life and that I don't need this kind of people in it.  I think she probably damaged her computer from slamming down on the exclamation points so many times.   And she was actually yelling at me on the phone, a very long, practically hysterical with anger voicemail.   

I'm not going to go the way they're going.  They are full of disdain and disgust with anyone who disagrees with them. They say the most hateful things you can imagine about President Obama and Democrats and always talk about how stupid everyone is.  Don't even bring up anything about fun control!  It's worth your life if you think that when the Constitution gives people the right to bear arms it might not mean the right to put together their own personal armory!  I'm not going that way.  I want to follow Jesus.  I want to be full of compassion for people.  I want love and kindness and tende rheartedness to be my characteristics.  I want to help the homeless, not condemn them for not working harder and not accuse them of running a racket and raking in all kinds of money.  I ant to understand those who hold different opinions and I want to be respectful of them.  

Oh, but ... she insulted my daughter!  She threw tons of insults at me, but insulting my daughter is NOT okay!  That is going to be brought up in my letter!  

I didn't get anything much done today except, after seeing my doctor and eating lunch ... which you know HAD to include CHOCOLATE after reading and hearing all of that stuff ... I finally got a lot of clothes and things returned.  I have a ton of stuff to return to Bed Bath & Beyond that I bought when I was trying to get everything in that bedroom and bathroom ready for our conference guest.  There are three items of clothing from Loft that I can't find the receipt for or the record for because we bought them in a store instead of ordering them.  If we ordered them, I would have an email record.  But one thing I bought in the store and it was defective, the other two things were ordered while at the store, so I don't have an email record. 

Tomorrow I plan to get my application finished and mailed.  And then the conference at the church starts Friday evening.  I'm looking forward to it.  Really hoping there will be a lot of worship music.  I wish my husband were coming, too.  We had some extremely important things happen in our lives the last time we went to a worship conference 28 years ago!  Long story there.  

I didn't get to exercise today, but I'm not going to let it bother me.  I've already exercised three times this week which is a record!

My mother went to see the orthopedic doctor that I think highly of where she lives.  It takes A LOT for me to think highly of a doctor!  So, she saw him this morning and she liked him a lot. AND ... he ordered an MRI because he thinks she has a stress fracture.  I laughed and said, "do you know what all I'm going to say if it IS a stress fracture??!"  She said she had actually told the doctor that she CANNOT have a stress fracture because that would make me right!  

So, that's my day.  My doctor talked about how I've been in therapy for so many years because that's what people who have experienced what I have need, but my brother has never faced his childhood or gotten any counseling at all.  I am still striving for wellness.  I know I'm not there yet, but I'm so very much better than I used to be.  

Cheers!
Lisa