looking to find inner peace without falling to pieces...

I spent most of my life, before I got sick, living on adrenaline.  Whether I was bouncing around happy, experiencing intense sports, or charging head first, into a fight or cause, driven by anger and righteous indignation I was generally all high energy.  Since I got sick and had adrenal fatigue (as well as every other type of fatigue thanks to my mitochondrial DNA not producing ATP's/energy molecules) I have found myself having to deal with being down/ low energy (sad/depressed/exhausted) more often then not.  

Also now that my "fight or flight syndrome" jump starts my pain conditions I have been learning to let go of my anger as well as stay away from adrenaline sports and even looked into meditation (though as a type A personality I seem to be physically unable to sit still and "let go" of my thoughts and mind).
So I am looking into Tai Chi and/or Yoga.... any suggestions?

Interestingly it is actually my messed up brain I have to thank for being willing to even keep looking.  I have never been very interested in meditation (though mostly because I have never been able to sit still and "empty my mind".  But a few months back I had a couple weeks of very intense "emotional lability syndrome".  I would swing, within a matter of hours, from extreme depression and or rage, that had me screaming and even worried about injuring myself on purpose, to being absolutely calm and centered and totally focused on whatever I was working on or needed to get done.  It was a feeling I had almost never felt before in my life.  It wasn't anything like I had thought or worried meditation might be (and I know it will take years before I can simply get to that place of my own volition, without my brain chemicals tripping me down the rabbit hole) but I think that level of focus would be an asset in any situation and would only help or augment my personality not change it the way I had worried about in the past.

"Life's Not Fair" But we tend to react like it should be...

This is a bit of a vent/rant post just to let you know :-/


I am well aware, both, that patience has never been my virtue and that nothing work instantly (especially my supplements) but even knowing those facts it is really frustrating that the day after I finally get almost all my pills down, after not getting almost any for a week, ends up being one of my more debilitating days physically, mentally, and emotionally.
I know the world isn't fair and things don't actually happen with the equal correlation we seem to be born expecting, but when you do something good or right or healthy, and especially when that something was hard to do in the first place, you want/expect  (whether that expectation is rational or not) the equal (and opposite) reaction to be it helping, or you getting positive recognition, or things being easier in some way and when it ends up not helping (at least not in any way that you can recognize) or in fact you feel worse, THAT JUST PLAIN SUCKS!!!

The way the world should work in the eyes of children:
Do something bad = get punished
Do something good = get rewarded
Be unhealthy or irresponsible = get/stay sick or face consequences/rebuked
Be healthy or responsible = get/stay healthy or be lauded/praised

I it doesn't work like this but sometimes I really wish it did... especially when I am in pain and tired and all I want to do is some damn chores to help out around the house (and because I know if I can just get reorganized I will be so much better at keeping a schedule and taking my pills regularly and be on the best path to getting healthier again .... but how do I do that when I don't have the energy or ability to even just put the dishes in the dishwasher let alone re-make my bed and change out all the cloths in my drawers from summer to winter and clean off my desk and table and set things up to make my life easier (less stressful) and there for healthier.

I'm Baaaack!!

Over the last year or so, since I stopped writing this blog, I have gotten emails and phone calls from people who said that reading it helped them.  And I have found that I need a place to vent and talk about my condition that isn't facebook. LOL
So I have decided to try again.
It has taken so long because my summer was pretty hectic and draining, and also because to be honest I wasn't sure if I could make it work, since I didn't do too well with keeping up with it regularly last time; and, to be honest, I know that I don't do very well with one sided interactions (putting energy out with out getting much or any back).
And on that note I have a request to make of you, the reader: please respond! Leave a comment, send an e-mail, if you know me personally go ahead and drop me a text or mention the blog next time we meet up.  I don't mean to take up a lot of your time and you don't have to say anything overly insightful or even helpful :) I just need to know you are there and that you are reading this.

You don't look sick... But I don't look like me either

A lot of people with an invisiable chronic illness (ICI) hate the phrase "but you don't look sick" or "you look great though" or "its hard to believe you look fine"
None of the above make any of us feel any better... at one point I was so frustrated I wanted to shave my head and tell people I had cancer just so they would leave me alone and believe me that I am extremely ill and disabled.

But today I am realizing that there is more to it than just being frustrated that people don't believe us, or at least me. I may not look nearly as sick or disabled as I am but at the same time I don't look almost anything like I did when healthy or even what I look like when in remission.
I am quite paler then I was most of my life or how tan I make sure I get when healthier. I have always hated being pale (only thing that stopped me going goth considering how much I love vampires lol :) I have pictures of me as a child at my family beach house looking darker than some of my cousins who are actually African American. I always find darker skin to be more beautiful and healthy. (Well unless you come from a culture that is truly born to be pale like the lovely red heads of Ireland or the Scandinavian Vikings, then you look pretty damn good pale at least in my opinion)
I have spent my life living in the sun and when I got older and my time for playing in the sun was restricted by work or study I would tan in UV beds... I actually tend to feel healthier too when I got a UV tan if I hadn't been able to be in the sun for weeks or months. I don't know if it was a needed boost of vitamin D or just the fire spirit inside me getting renewed by the heat (that is an image I used to get in my mind while relaxing/resting in the beds).

I also hate my weakness, it isn't overly obvious how damaged I have become while sick on the outside but I was muscular and fit (I could squat 250lbs and bench press 160 while weighing only 110, now I am lucky when I can lift all my groceries or a gallon of water). Its true you can't see the damage to my muscles but you can see the 20lbs I have gained of fat (and since muscle weighs more than fat that is a lot of chub). My legs have almost no definition to the calves anymore, my thighs rub together and I have had to buy new sets of jeans at least twice and can't come close to fitting into almost anything I loved to wear when healthy. My breast were only a B cup but with pectoral muscles as strong as mine were they almost seemed fake they were so high and firm and perky :) but now I am heavy starting to sag D and I honestly miss the perky lil boobs I had. I had a six pack for years. Even when it wasn't totally defined it was always flat. I may have been prideful but my body was powerful it was strong and had been used more than once to defend itself from attack. It was attractive and that gives a woman a sense of power all its own.
So now I don't get the understanding I deserve for being sick and disabled... I get yelled at or dirty looks when I use MY handicap pass, or wheel around in my wheel chair till I feel alright to stand and then walk because my circulation needs the leg movement so badly (but if I can walk I don't need the chair I must be faking it right?) And then on the other end I am stuck with weakness and vulnerability I am both unused to and most days unable to stand (I have always been able to protect myself to be defenseless is terrifying and I never dealt well with fear) and I feel unattractive and my pride is crumpled.
Why do I have to get kicked when I am down especially when almost no one is willing to admit or able to understand that I am down?

New Docs and a Joke

Well it turns out that two of the docs I was expecting to be seeing while back here in NYC are no longer seeing patients. UGH!!!
And I am about to run out of one of my narcotic prescriptions (the one that causes awful severe withdrawal symptoms) is about to run out... Don't I just feel like fate is on my side? Well actually yes to some degree it is ;) I tricked ya for a sec there didn't I?
It turns out my dad's regular doc likes him a whole lot and is aware of the very negative effects of withdrawal from this particular drug and was willing to see this morning, and my dad only called to make an apt yesterday afternoon! Can't beat that.
SO even though I can't sleep, I am in awful Fybro and Neuro pain and my whole body hates me for working out a lil too hard 2 days ago I got at 9am (which is really really early for me) and went to the Dr.'s office (something I generally really don't like doing).
The NP I saw was nice and my dad's doc was a lot like many other doctors who don't know about this rare and complicated illness. Doctors that have been at their post for 20 years or more want to believe that know the answer and new problems and issues and illness and diagnoses seem to bother them and they can't believe they are true so it has to be something they are familiar with ... but my problem is that what I have isn't what they seem to want it to be. I am NOT bipolar, I DO NOT have MS, I can get depressed at times (chronic severe pain, life long goals destroyed completely, and a body that barely works half the time... if I wasn't depressed there would be something very wrong with me) but all that not withstanding I am NOT suicidal, I DO NOT over take my painkillers (damn it people I barely take them when I need them and never take as much even as I am prescribed), I am NOT addicted, I am NOT in pain because I am depressed BUT I am depressed (sometimes) because I am in pain.
I like the Doc and he did agree to give me a new prescription but I really hate dealing with the medical establishment most of the time. I am sorry for the rant but hey can you blame me after spending 2.5 hours explaining my illness (that has been diagnosed by some of the top specialists in the world or at the very least the entire western hemisphere) and then having to repeatedly defend my treatments (that have been proven to work) and the diagnoses and specialists them selves.
NOW on to the Joke: (my dad told me this after the doctor appointment was over and I found it truly truly hilarious I hope you like it too :)
A woman walks into a veterinary clinic with a duck in her arms and asks to see the vet. He sees her immediately and after examining the duck he says "I am sorry mam your duck is dead. "
The woman becomes very upset and starts to cry and says "Oh know he can't be please please do something!"
"Alright" he replies and he goes to the next room and returns with a Black Labrador. The dog pads over to the duck, sniffs it, and pats at it with his paw, then looks at the vet and shakes his head and walks back out. "I am sorry mam the duck is dead" says the vet to the woman.
Once again she starts to cry "Oh no, oh no he just can't be dead please please isn't there anything else?"
The vet says "OK, OK calm down" and walks to the room across the hall and returns with a very very large tom cat. The cat pads over to the duck and and circles it, and puts one paw on the duck and then the other, batting at it and patting it. Then the cat sniffs it and lets out a cat sneeze and dirty look, turns to the vet and shakes its head and walks out back to its room.
The vet looks at the woman and says "I am sorry mam the duck is dead. It isn't coming back and there isn't anything else I can do".
Sniffling and crying the woman is now resigned and walks out to the reception area to get her bill. In moments she comes back to the vet extremely upset.
"150 dollars?!! For a dead duck are you crazy??!!"
The vet looks at her and says "mam I told you the duck was dead, if you had excepted that it would have been $20, but you required Lab results and a Cat scan"

I hope that made you laugh!!!
TTYallL