PTSA or No PTSA, that is the question.

I have been involved in the PTSA for 3 years now, this year taking on a more critical role.  I am the Secretary of our schools PTSA, I took this on knowing that I could make a difference and to have my thumb on the pulse of the school.  Well it is the end of the year, and I have to decide whether to be this involved again next year. 

I love the PTSA, it has forced my husband and I to become more involved with the school, and now Teachers and Students know who we are.  I love the purpose that the PTSA gives me,  the activities and the busy-ness that it creates, and the fact it is selfless.  The work really has a way of taking me out of my own head and applying my energy towards brighter things.  With all of the stress, at the end of the day, it makes me happier.

My husband being the Vice President for the past 2 years it has really taken a toll on our family. The exhaustion that I get sometimes is so crippling that I can only walk down the stairs from getting out of bed to just sit in the recliner before I am totally wiped out.  I am not lazy, I am not bored, I am weak and exhausted.  So in saying this I don’t think that I could take on a larger roll than Secretary. 

Vice President has been brought up, and I have accepted as long as a President is found.  I will not be able to fulfill President no matter what.  It is so hard to find the balance of  “Use it or Lose it” and “Stress will cause further setbacks”.  I am more concerned with thinking clearly.  I have had a few major mishaps this year that have really shown my lack of cognitive resources.  I cannot be a leader if I doubt myself, which sucks, which really sucks!!

So in closing I am still pushing to stay involved but in a lesser role.  Which is just, ok.  I am disappointed that this is such a hard decision but, you sometimes have to make choices based on what you can live without.  The joy the PTSA gives me out weighs the agony.  And I will take joy anywhere I can get it.

Sour Dough and Gluten Free

I have been waiting for answers from the doctors to no end.  So I have taken it upon myself to do what I can do.  I researched gluten, and easier to digest alternatives and Sour Dough has come up over and over again.  So I took a closer look.

I made a starter dough and it worked, I tried 2 recipes for bread, and buttermilk sourdough waffles, that were all very good.  With Sourdough the yeast and good bacteria break down the gluten and make it easier to digest.  The fermentation process removes phytates and enzyme inhibitors.  There are a lot more great reasons to make sour dough, but the internet is filled with great information on this subject.  I wanted to get the nutrition from what I was putting into my mouth instead of it pulling nutrients away from me. 

I was so psyched to find this information out.  I jumped right on and even made a loaf of bread that took me 10 days, which in truth was really frustrating!!!!  But they all turned out perfectly.  My kids loved them, and so did I, which is awesome.  Plus there is something about making bread that make me feel like I am doing something good for my family.

Well this was lovely!  Everyone was happy, great bread, blah blah blah!  The weakness I was experiencing was continually getting worse everyday.  I thought to myself if this continues I don’t know how I am going to make it through the week luckily I had an appointment with my Neurologist coming up, and he would finally see a “bad day” for a change.

I went to my Neurologist for my 4 week check up.  He gave me the results of the skin biopsy, I have….  wow really, I have been saying the term for two months and now it goes from my mind!  Holy Crap I am going to have Google it, it really isn’t coming to me.  I have Small Fiber Neuropathy in my calf, but my thigh is normal.  He then tells me my blood work that I had done 4-6 weeks ago shows that I am Vitamin B-12 deficient and that my ANA tests are still elevated.  (In truth I had no clue to what he was talking about, I don’t remember getting blood work done recently, unless it was from the ER in January.  How confusing.)  He checked over my chart and wanted to discuss my abdominal problems, he told me that I needed to go 100% Gluten Free, to see if the the B-12 deficiency was stemming from there.  I asked him if there are any treatments for Small Fiber Neuropathy and he said the damage is permanent, there is no way to reverse it.  But if Gluten is causing my problems then removing it from my diet would stop more damage from happening.  I asked if there was enough evidence to diagnose me with an autoimmune disorder and he said that there still wasn’t.  I did get a Vitamin B12 shot and I scheduled an appointment to see him again next month.

This of course is huge for me, but in truth it was just crumbs.  I have something , but really nothing still.  My ANA results have been elevated for 6 months or more now, no shock there, but on their own, without other evidence, they mean nothing.  With this other evidence I was hoping for a clear path to take.  Yes I will go Gluten Free, and yes it would be nice to stop the damage that my body does to itself from happening, but at this point I just have little hope that it will prove anything.  I am still so frustrated with this Limbo state of mind.

Practical Changes. Part 1–Beauty Products.

There have not been a lot of directions given to me to help my situation from my doctors.  Through researching on my own I know that there are things that I can try to improve.  I can be more mindful of the products I use on my skin and body.  Soap making has given me the freedom to eliminate a lot of the toxic chemicals that can disrupt the endocrine system.  Along with soap making I can also use those same ingredients to make better products for myself and my family.

Homemade Soap -Vegetable Oils, Sodium Hydroxide, and Fragrance

VS.

Body Wash-(I have listed only the toxic chemicals that I have found on the back of my body wash).   Sodium Lauryl Sulfate, TEA (triethanolamine), MEA(monoethanolamine), Parabens (ethyl, butyl) Propyene glycol, Synthetic Colors and Fragrance. 

*Granted I am sure that I may have missed a few here, the writing is hard for me to see.  (Probably because I used to love using this stuff, LOL…)

This is one example, but an important clue to the toxins we allow our bodies to be subjected to on a daily basis.

I have had fun making our own:  Sunscreen, Deodorant, Body Butter, Laundry Soap, Liquid Dish soap, Foaming Handwash, Hard Lotion, Sinus Relief sticks, Lip Balm, Toothpaste, Bug Repellant, Room Spray, Body Mist, Pillow Spray, and Halloween Makeup. 

• With a lot of experimentation, I have been able to keep a lot of my recipes and use them again.  There are still some that I have to work out the kinks on, like the deodorant, toothpaste and I would like to figure out a nice sudsing shampoo and conditioner.

Endocrine Disrupters.  Getting rid of these from my daily routine, could help.  My logic is if I know this and don’t do anything about it, what a waste.  If you know better, then you need to do better.  I have slowly been changing out these products from our home.  It is hard to take them away from the rest of the family when they are simply more “convenient” for them, but for me I really do use my homemade products, just in case. 

*The book that I reference these as toxins from is:

• “Is It Me or My Hormones?”-Marcelle Pick (page 105)

Websites with further information:

National Institute of Environmental Health Sciences

Organic Consumers Association

 

Brighter Day! Work today.

I work 2 days a week at our local library, Wednesday and Satuday.  I chose these days because working 2 days back to back was too exhausting for me.  After a day like yesterday I dread to see how I will manage today.  I just woke up and am feeling very weak this morning.  After getting ready for work I realize the fatigue is staying with me today.   .........

Luckily I was able to come home early from work an hour early.  I love my job, even on my bad days I know that its worth it to put in that extra effort.  I may be dog tired from just the few hours I do at work, but I feel like I make a big difference and that brings me a lot of joy and satisfaction.  My boss is very supportive and wonderful, I am grateful for her in my life.

My Husband had some of dinner cooking in the crockpot when I got home, so dinner was a breeze.  I took a little extra time to make dinner better, by sautéing carrots, celery, garlic, onions, and mushrooms (instead of just frozen mixed veggies).  The kids loved everything, and dinner turned out wonderful.  I have a great support system here at home and that makes me so proud!

I have a mess in the kitchen to keep me going till bedtime so it is about time for me to plug in my headphones, find that willpower and get to it, while listening to my book. I would love to hear from you, please leave a comment below, thanks for checking out my blog.

*Update* the audiobook "The Miniaturist" became unbearable so I stopped listening to it.  I refuse to listen to/ read something that I cannot find entertaining.  Life is too short.  That is that. :(

Dark Day... Bring on an Audiobook!

What a dreary day outside today.  My vision is bad today because of how dim everything is.  This morning I was overheated when I woke up, so it took me 15 minutes of just cooling off before I had the strength to get up and moving.  So in my quick initial symptom assessment, I have set my daily tasks to low effort.

I am ready to start a new audiobook to get my head in a better place.  I keep a good collection of audiobooks on hand to take my thoughts away from some of the challenges I face.  I enjoy reading, but even reading on my tablet can cause me to fatigue easily, especially on days like today.  Plus with audiobooks, I can listen while I do housework, cook dinner, rest afterwards, or even while I am getting ready for the day.  An added benefit for me is, when I go to work I can recommend books that I have listened to, and know what I am talking about, so it keeps me informed for my job.

The Miniaturist by Jessie Burton, a historical fiction, with magical realism.  I can't wait.

I was able to get almost 1/2 of this book listened to throughout the day.  I was able to keep up with dishes and folding laundry.  I know this sounds minute, but if you felt like you were crawling through quick sand all day this an accomplishment.

The problem I faced though was when my nook died and I didn't have any other device as a backup to keep listening to my book.  It looks to the outside world that I am over obsessed with listening to my audiobook, when in reality listening to audiobooks keeps me from becoming desperate about my situation.  Its a trade off yes, but this is how I have learned to cope.  I rarely fall into depression from all that I have to face, without using drugs to get me here.  That is how I choose to manage.

Mission Statement:

I have been struggling for 3 1/2 years with neurological symptoms.  A few people have asked me to blog about them.  I will only do this in the hopes of letting others stuck in this limbo state, know that they are not alone.  I do not like to talk about this, I have chosen to only tell a few trusted people about some of the more in depth details.  I find that a lot of the symptoms I am experiencing are embarrassing. 

I have had doctors look at me like I’m foolish, I have had others say there is something definitely wrong, but they can’t do anything for me.   I by no means am an expert, but I know that something is not right with me. But I am here to say I know my inner truth and I am not willing to let others make me feel bad, or crazy.  I will find out what is wrong with me and until that day I will not give up.

My goal with this blog is to help others get out of their own heads.  I find that dwelling on the idiosyncrasies of my day, tends to drag me under.  I refuse to let it get the best of me.  So I try to find solutions and different activities that I can do to put me on the right path.  Join me on my journey for a diagnosis, and life that happens between here and there.