been tied up ... and forgetful

I know I haven't been keeping up with this AGAIN! :-(
The last 3 weeks have been especially hard I had an important family obligation in DC and found out right before we left that my grandma's last cousin of her generation had died, then the next day on our way down I95 running late and hitting more traffic then should be possible (which drives my mom totally nuts and I stress out when she gets really upset) we found out that my mom's oldest friend (who had married my uncle and become my aunt) had just died as well.  We were able to make my grandmother's cousins funeral in Richmond VA but didn't have the money to get to Texas for my aunt's.
Then a bit after we got back to NYC while I was trying to stay on my feet (I had actually done pretty well with the whole trip and funeral health-wise) my father fell and his artificial hip popped out and we needed to get him to his hospital but they no longer took emergency patients so we took him to Northern Westchester cause he's been there before.  It turned out that the hip had punctured or gotten caught in his muscle and they tried and tried to move it back into place but couldn't and he had to be admitted and then we had trouble getting in touch with his original surgeon to see if we should move him... He ended up going under heavy anesthesia 3 times at least and they had to order special parts and he was in so much pain even with the constant pain killer drip.  I kept going back to the hospital to try and be there for him and help but I was getting weaker and worse off and  all the high pitched beeping and alarms and other stuff was honestly painful.
So my dad finally gets figured out and his hip is back in and he leaves the hospital and says he's fine on Thanksgiving.  I was in a lot of pain and kinda miserable that day, but dinner was great and I was able to get myself OK enough to watch my University rival football game and we lost, in our last game ever against a team we have had a rivalry with for more then a hundred years, by 1 point in the last 2 seconds of the game. I was enraged/crushed.
Then I get home and am really feeling the toll of all this emotional and physical stress... and my "lil sister" was in horrid pain with a nasty infection in her mouth and her parents wouldn't take her to the hospital and had given her pain killers (seriously heavy hitting) and antibiotics without even talking to a doctor.  So now I'm trying to help her check the meds and any interactions online and find her an emergency dentist or Hosp ER with a dentist on call.

So that is part of my excuse for not having been around when I had said I would be....

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?