Monday, April 29, 2013

Living within

This illness has had a bit of a bell curve.  When it began I was in constant denial of the depths of how bad my health was and pushed through day in and day out living my life despite the insanity.  I would push this craziness to the back of my mind and some how carry on.  The symptoms were constant  subtle whispers of something terribly wrong.  When I ignored that long enough they began screaming symptoms with the rapid weight loss, intense body aches, inability to concentrate oh the list goes on, but no answers and no diagnosis meant "I wasn't really ill."  Then it reached the peak where getting out of bed was nearly impossible, I called that episode "mono" tired.  Since most people could relate to the illness mono or knew someone who had had it.  The effort to take a shower, or comb my hair some days became Herculean tasks.  Then there were the days where I "geared" up all day to attend an event put on the happy face and the second I would walk into my home crash on the bed too tired to undress.  The past few years things have moved again, acceptance and treatment.  In some ways this has been just or more difficult than the past, because I am no longer "living" a normal life, I am "fighting" every day to return to some resemblance of normal, but the process is difficult.  The treatments take me out of state, and often I wonder if Wisconsin is truly home when I spend more time in Phoenix.  Over the past 6 months I have learned to be a gracious receiver.  I have learned to allow people constantly in and out of my space and learned how to appreciate accepting help even when you do not want to.  I have learned to trust in a way I did not think I could with my physician and this process.  However, there are days when I am so low that I can not comprehend this has become my life, a life directed by an illness not the other way around.
Thank you Addison
So today I made a big decision, a leap of faith, I am coming home for a short weekend.  My doctor needs me to stay in Phoenix longer than we had hoped for legitimate reasons, but today she agreed with me, that a quick trip home would be a good test.  And for me it's the first time that I have decided to live again and put the illness second, and my hope is because I can, it is a whisper of strength.  What I know for sure is that you cannot will this away you can push harder, but at the end of the day mind over matter is not an option.  However,  I have the confidence that leaving on a Thursday returning on a Monday will not set me back months, perhaps it will crash me for a few days or even a week- but I am prepared for that, and feel strong enough to take that risk.  And I think today my doctor understood, I said I have missed so much, I am just so tired of missing my life.

Am I nervous, hell to the yes.  It's hot which means flying is hot on the runway in Phoenix, and I don't do well in the heat.  It's a quick trip with a two hour time difference, and it's a weekend with scheduled events.  But this also feels like a tide change, that despite how sick I have been the past few weeks I was startled that my mind would even allow this plan to form, so that has to count for something.  This past few weeks have perhaps been some of my lowest, yesterday for no reason at all I used the counter for support and just cried wondering how the hell can I keep doing this, but for so long I didn't even have the energy to imagine that I was doing anything, apathy is scarier than fear.  Apathy is when you are too tired to form a plan, too tired to care, too sick to do anything but move your pinky finger as you lie perfectly still.

So today there is that little glimmer and even if it is gone as quick as the clock strikes midnight, it was here.  Maybe I have moved the pendulum just enough to begin living within this illness rather than the illness being all I live.

Mary and Willi's "Garten"
P.S....So while up for the second night in a row at 4am being sick, I was having serious doubts about my "plan"...but I will borrow Glennon Melton's words and Carry On...sometimes that is all we can do but carry on, move forward and try to live again without constant doubt.

Sunday, April 28, 2013


Black Blood...better when red

I love 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 if you are curious Google....

Monday, April 15, 2013


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 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.

Friday, April 5, 2013

Hamster on a Wheel...

I can't stand hamsters..hamsters, gerbils, rabbits (as pets), ferrets, you get the 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

Tuesday, April 2, 2013

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 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 will 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.

Disqus for Festzeit