Google

Black Blood...better when red

I love google....so I know I don't write a lot about the specifics of my treatment protocol and that is for various reasons.  First, it's not a one fit all type of therapy as far as the nuances of the treatment.  However, I do realize that people are curious, so here are a few google searches of my main therapy UVB...Ultra Violet Irradiation...besides the UV light the blood is also infused with oxygen or ozone.

Fairly Decent Audio Explanation (fyi this is not my doctor)

Another Google Find

Why isn't it used more....

Well you get the point...so if you are curious Google....

26.2

I was in the shower this afternoon, looking down at my heroin chic arms battled and bruised.  I was thinking how I haven't hydrated well enough today and how just a bit of cleaning on Saturday landed me in bed most of Sunday.  I had looked at my calendar the evening before and realized I only have three more weeks in Phoenix and only time will tell how I leave here.  The water slowly poured down and I had one end of the shower door open so I didn't get too hot.  Tony, the air-conditioning repair man had just left and I thought about once again the kindness of strangers...and how so often I feel all alone and then there are these strangers among me every day that offer up the kindest of support.       I think perhaps at some point they are disarmed by the honesty.  As he was giving me facts and figures of how we can improve the system, I finally looked at him and said, I am sorry in my old life I could process all you are saying but right now I need to lie in bed and just give me the end of the story, I have no room for the beginning and the middle...just wrap it up to the end.  And I just gave my truth.  Before he left he told me if there is anything I needed while I am in Phoenix they always have trucks around the Valley...a light bulb changed, anything heavy lifted, but that he couldn't promise laundry or dishes.  I appreciated the humor.  It's easier for those who don't know me.  It's easier for the stranger with the illness that they just met to feel useful and offer a helping hand.  It is much more difficult for those that see it day in and day out and the tiny changes that we must claim as progress.  The tiny changes that over the course of 4 years have become big changes but they are not changes that have given a life back.  They are however changes that continue to offer hope.

This illness has become like a family member that I can vent about and write about frustrated about all I have been forced to give up;  but everyone else must be careful to point that out or I will bite.  Because it takes away my power when they point out all I have lost and many days all I see is what I have gained.  Last week as I was at the doctor I began to laugh, it's all I could do.  And I told her, look how far we have come, you are on your fourth vein, I have blood all over my hand, my one site has become swollen and I am truly laughing four years ago I would have been terrified...I have let go of the control...what an amazing gift to trust someone else so completely that when all is falling apart you know you are in capable hands.  What a gift that I have gotten to the point where instead of making people around me feel guilty about what they can do that I can only witness I am just so happy I may able to make it for a few minutes to see their joy.  What an amazing gift that thirty minutes of alone time at the Biltmore Resort with my niece was as close to perfection as I could imagine.  And the day I may be able to eat mashed potatoes again, well let's just say nothing will ever taste so good...because now everything is much more than it seems to be.  So if anyone else points out what I have given up...it is I who feel sorry for them and I can finally believe there is much I have gained.

So back to the shower, I was looking at this bruised body and feeling more like a bruised spirit and I realized there is such a fine line between being cowardly and courageous.  And decided once again, today, like the 7 plus years since this began the only one that could choose which way it would go would be me.  So I dried my eyes, grabbed my towel and decided now if any was time for stoicism.  And before I left I turned on the TV to see just that...horrifying acts of cowardliness and acts of courage on a much grander scale.  We all have our battles, some are just a bit more quiet than others.  We all fight our own 26.2, the tragedy is those believing their courage is defined by destroying the spirit of others.

Hamster on a Wheel...

I can't stand hamsters..hamsters, gerbils, rabbits (as pets), ferrets, you get the idea..no semi passed off rodents as pets.  It may have to do with my insane allergies to the aforementioned animals, but also I think they are creepy and smelly.  But this week I feel for them, well mostly the hamster because I may as well just be spinning on that wheel going no where but you keep on moving anyways.

Image Credit

Don't Cry in Cashmere...

It was a very bad day and for some reason I just started to cry.  As my achy body that brought the phone to the bathroom with my in case I would "fall and can't get up"...the entire routine, the not making it to the doctor today because I had to turn around as I felt dizzy and unwell.  The manifestation of symptoms that have been dormant for a few weeks and even months have begun to surface.  It just seemed like the only thing to do was to cry.  Not a sobbing cry or a I feel so bad for myself cry, just I don't know what else to do right now and the tears just seemed to be the only release.  Then I got out of the bathroom, leaned against my wall of good wishes, and looked in the mirror.  And there was this voice in my head that screamed..."you can't cry in cashmere pajamas!!!"  You can be angry with this illness, you can be disappointed in this life that you did not imagine, but damn you will not cry when you are headed to a comfy bed in comfy clothes despite the very uncomfortable body and you will begin again tomorrow.

So far "tomorrow" has been anything but pleasant.  I am so fatigued that typing seems like exercise, lifting a glass feels like picking up a dumb bell and my faith and hope are being tested.  I picked up the phone and asked for help, I need to take a shower but didn't want to do it home alone...so my friend is coming over.  I picked up the phone and called for someone to take me to the doctor, so I am not forced to turn around today.  And I am closing my eyes and repeating that I have been in this place before and it will pass...it will pass...it will pass...but I am so tired of waiting and times like this it's hard not to be scared that all it ever will be is waiting for a different tomorrow that may never fully arrive.  The bad days are just apart of this illness, the inconsistent path to wellness, it's measured in months and years not days.  So today and yesterday that is all they are - bad DAYS...and I must remember that I have been in this spot before and I have left it before.  And until then at least I am wearing cashmere pajamas.  When the fatigue gets this bad, sometimes I get scared to close my eyes worried perhaps I won't wake up.  This is the ugly brutal exhausting part of this illness that is no longer an illness it is your life.

Dress

I bought a dress.  

It reminded me of my old life.  

I don't know if or when I will wear it but it's there just in case.  

A little bit of hope on a hanger.

Someone Else's Story...

Learning to Live With CFS: Post-Event Crash

By Sue Jackson

Live with CFS

I have shared other's stories before, but this post by Sue Jackson, resonated with me this week.  The above is the link to Sue Jackson's post that I needed this week.  A reminder that I am not crazy and there are kindred CFS'ers out there.  I also hope it will be helpful for those that support me and try to understand this illness and my non traditional route of treatment to read someone else's story.  To understand there is no magic bullet that I have chosen not to take. Yes, I have taken a road less traveled, but it is a well thought out road.  I never judge how anyone chooses to handle or treat this illness, because there is no clear answer.  And I believe since it is an immune disorder there is no "one" treatment model that fits all.  Most of us were told by doctor after doctor that we were not sick but we knew we were.  Most of us woke up every morning thinking something is wrong but I must be making this up.  Most of us have been our own advocates, our own teachers, our own guinea pigs to figure out what will help.  

My family was just visiting for ten days.  And it was wonderful and exhausting and irritating and felt like a massive mirror in my face reminding me that I am not well.  But what is hard to see is how much better I am.  I am better but this illness is not measured in days or weeks or even months...and for all the improvements I have made there is nothing like watching others on vacation to feel a bit empty inside and once again trapped by this illness.  It's a bit like that Sesame Street song, one of these things is not like the others...well I am the other...and I am tired of being the other.

The thing is for most of us CFS'ers our home is our escape.  We don't have the luxury of jetting off for a vacation, or running to the mall or me out to dinner when we get overwhelmed....our home is our haven and our home sometimes feels like our house arrest.  So when anyone is in your space, you don't have that outlet to escape to and that is what hit me so hard this time.  Because I love people in my space, or at least the "well" me loves people in my space.  Now it at times feels suffocating because I need to retreat to my bedroom and find the quiet to find my balance and it is not what I want to do, it is what I have to do and it breaks my heart.

Make no mistake.  I am better and if these food allergies didn't keep me tethered down I would have much more freedom within the confines of this illness, but there is no room for "ifs" that only weighs you down.  I am better and I am better at knowing my boundaries so that I can make the most of my days.  I am better and I have adapted to this new life but I will never stop fighting for me to dictate my life again not this illness.  I hear you loud and clear Sue.

Bittersweet

May your life always be more sweet than bitter...and if it is not may you find the way...

Bittersweet by Brian Andreas

www.storypeople.com

Big Head Todd and the Monsters
Bittersweet - Live at Red Rocks
http://www.youtube.com/watch?v=Wyd9OcI37AY