Monday, April 30, 2012

Some Photos

View leaving pool - last time

Where I escaped - The Catalina Pool

My perfect traveler

Home sweet Home


New Info and Haircuts

I forgot to tell everyone....but I GOT MY HAIRCUT AT A SALON!!!!!!!!! Again, this to me is another huge step that I made some significant progress in Phoenix.  The last time I got my haircut was months and months ago and my cousin Paul came to the house and cut it for me.  This time, with the help of a driver..aka mom, I made the 30 minute trek to Mequon the day after my flight in from Phoenix, and arrived at Kwof, Paul's salon.  I took one precaution, which was I washed my hair before I went to aid in the process.  I also realized that the act of having my head leaning backwards in the chair was probably a major factor in the difficulty I would have and feel so out of sorts going to the salon.

I tried to get a iPhone self photo - but please, who can look into a camera and take a self portrait that doesn't look absolutely ridiculous!  I did take one by accident that was my shiny locks and the bottom half of my face, but upon further review was concerned it looked like some strange pic you might find that corresponded with a 1-900 number!  Here's Sue's latest post that made me think of the connection to my haircut.


New CFS Brain Study Shows Reduced Activity

My Yahoo Alerts e-mail this morning was filled with articles and postings on a brand-new CFS study just released (but not yet published) by the CDC (believe it or not!).  Here's a summary of the study (pretty brief and easy to understand).

This is an interesting one.  They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward.  Not surprisingly,  the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).

Several interesting points stand out here to me.  First, the study was conducted by the chief of the CDC's chronic viral diseases branch!  This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.

The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.

And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation.  I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS.  I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy).  It's nice to have some biological evidence to back up what we are experiencing.

Just an interesting little tidbit from today's news.  I know I haven't been writing much lately, but I've been really exhausted and overwhelmed.  We've had house guests since Friday, and I have been working frantically on a major writing project.  I hope you are all doing well this week!


As someone whom for the past six years has felt like every day I am hanging by a thread to survive - I can not understand those that choose to go on a show like Survivor.  There is an element of the show, which to be fair, I have only seen the first five minutes of one show, that I find extremely offensive.  I know, I get it - its entertainment value, its pushing oneself past any limits they thought they had, I am not immune to that understanding, however when in the real world there are so many people truly trying to survive - there is that part of me that gets that "ick" factor - not being humble that "surviving" for entertainment value thumbs its nose to those that literally have no water.  But again, I always recognize my world view as being skewed because of this struggle I have been dealing with - and it is difficult to separate those feelings everyday with a show that people choose to but their health at risk - and as someone who again knows that often that health is not guaranteed I have a concern for those individuals that perhaps will push their bodies past the point of no return.

I personally love the show Amazing Race, much of that comes from my envy of those that can dive into life so fully and handle the grueling experience that comes with that journey.  But it also highlights the struggles of the world and how others around the world embrace what we as American's can not comprehend.  It also seems to bring out the best in many people as their hearts are forever changed by witnessing so much of the world - that they may have read about, or seen on tv, but now they have had the unique opportunity to add to the fabric of that world experience.

The point I am trying to get to is today - despite the dental aversion - I felt really good.  And more importantly, for a large chunk of time I didn't feel like I was merely surviving.  The past few weeks I haven't discussed in depth the virtual "starving" experience that I have had to deal with - without getting into too great of detail regarding the specific reasons, but I have had a great difficulty eating and feeling that I get any nutrients from what I do consume.  Besides my choices being severely limited due to the food allergies, think of it as if your intestines are lined with a barrier that prevent your body to take in such nutrients.  So I often have this overwhelming feeling of starvation, but when I try to eat get extremely nauseous.  Therefore, I eat very small quantities throughout the day - and eating becomes a huge struggle to find what may help to make me feel satiated.  For those of you that have been pregnant, perhaps you can on some level relate to this aversion and craving of food.  This of course compounds my fatigue.  The last few days it hit a peak - I would hold off eating as long as possible because all food was so offensive and then slowly (that's not unusual, since I could win a slow eating contest!) muster the energy to eat and hope it would not make me repulsed.  The past few days it has been physically and mentally overwhelming.

Then there was this evening....and all of a sudden, the smell of food wasn't making me sick and I actually had a true appetite.  So for dinner I ate like someone who was just released from Survivor Island...and I had the following - buffalo mozzarella, tomatoes, with herb salad and dressing, lots of asparagus, gorgeous salmon and crackers with a havarti cheese spread, and I ate with such vigor and appreciation I find it hard to express with words.  Food, it had a taste, a texture and for the first time in weeks I actually felt a bit full in a good way after eating.  I have stopped wondering what it may be like tomorrow - but this evening was a bit of heaven!

When my mom, grandma and I were in France, the last night before we were headed home my grandma didn't feel that well.  My mom and I were headed out to dinner, and at the last moment my Grandma decided she would buck it up and come. Remember, this was a long trip for her, and she was dealing with bone cancer, and pink eye from Lourdes!  She didn't each much dinner, but then for dessert we ordered a chocolate lava cake, and as my grandma finished - she looked up with the biggest smile and said - " I would have died if I missed this! " which of course was ironic because she was dying - but lucky for all of us she was the miracle cancer patient that lived twelve more years!  But I can appreciate how she felt about that cake, food has become such a chore and so many wonderful options have been taken away from me, that on a night like tonight when I was able to eat, enjoy and be symptom free from any food sensitivities, its something I never take for granted -

Here's hoping this trend continues...

should be...

So I should be at a the dentist right now.  I was at the dentist, I white knuckled it there and sat in the parking lot gearing myself up for the not that traumatic cleaning.  Then I told myself I was being absolutely ridiculous being nervous to go to the dentist, took a deep breathe, strode confidently to the front steps, opened the door - saw no one at the front desk and before the door could close behind me I was out of there.  If I wasn't so irritated at myself I probably would be laughing - okay, so I am laughing a bit at my CIA like operative mission - I don't know what came over me - that weird smell - the 70's looking furniture - or being over stressed from everything else - but today I just couldn't do it.

This isn't a new dentist, and despite every time I enter I want to leave, I have never before pulled the quick exit like today.  I didn't make up some phony excuse, when I called, however I did high tail it out of the parking lot in case the hygienist had any idea of coming outside to cajole me inside.  It is all so ridiculous, I am 39 years old - and have spent the last three months getting my blood removed and re-entering my body - yet the thought of mouth wide open, the utter loss of control today for some reason just was too much to handle.

This past weekend I have been dealing with the concern that my house is giving me a headache.  I have already had a mold guy out here, before we left and he found a tiny bit of mold in our OCD pristine basement, I have had the vents cleaned, and now I called the mold guy again because I feel like something in this house is making me worse.  The thing is I love my house,  my dad and uncle had it completely gutted and its right behind my sister's house - but there has always been a smell - that only i can smell or others if the house is closed up for extended periods of time that bothers me.  So, its been an uncomfortable feeling, I have had all the windows open and turned the heat off - just in case...

Yesterday, I felt like I was losing my mind - overwhelmed by the possibility that something that may not bother anyone else I am hypersensitive to - and all you want to do is feel comfortable in your own home, and right now I do not.  I am guessing its more about getting use to a humid climate again coming from the desert - and am crossing my fingers that the headaches I am getting - a symptom that I never have is just an odd coincidence - but we will see.  Mr Air Quality guy Pat is coming on Wednesday.  And Thursady - take two at the dentist.

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