Monday, June 12, 2017

Comfort Food.....



Cheryl Juech - This lovely badge of bravery and tulips were left on my doorsteps.  Coming from such a brave woman...humbled...grateful...and I look at it everyday.
  
I wanted to acknowledge to all of you that read, follow or share my blog I am so very grateful.  This current post went far better in my head but I will admit after a really bad week that I wrote it more to accomplish something...and thank you for hanging in there with me as it's eloquence is not of a standard I pre this illness I would "publish".  The pictures are the sweet kind things people do... The last two weeks I've been dangling from a cliff of sanity and I knew I had to write.  Write anything...something..have some control over the endless list of things I can't....

Sophia Dentice...this gem along with the book by the same name arrived in Phoenix this winter.  The book has fabulous music lists, an amazing story of perseverance and an unexpected story about the brother's amazing sister.



I use to be the person you loved to have at a dinner party...because I hated to cook and loved to eat.  I use to keep a revolving list in my head of my top 5 favorite meals.  The thing about the favorite meals most often as food does it's attached to the moment; hence the comfort is a combination of the people and the food.  So you need the two parts to get comfort food...the food and the people.  I could rattle off probably 50 favorite meals/dishes from homes or restaurants but a quick top 5 is no brainer...

1. Post France Thanksgiving Dinner.  I had returned from a winter break abroad in Nice, France.  The couple I stayed with, let's just saying cooking was not their forte.  The French pun was unintentional...anyways long story short I had to have "dinner" with them and they lived a bit far off the bus line to go dinner by myself and walk home and their dinners were pretty typical first year of college living on your own type meals.  Which was kind of okay...except for the restrictions that most people's refrigerators in France are about the size of a dorm refrigerator, so I really couldn't buy my own food - besides we weren't suppose too...and I was a rule follower. I didn't want to offend them by bringing my own food, and I was already clearly offending the one woman by even living with them and taking their bedroom.  I can't believe I can't remember their names...and in the era before email and facebook after I left we never had contact again.  So when I got back home to Wisconsin my friend Sandra prepared my favorite an entire Thanksgiving dinner.  Though I loved being in France, and perhaps under different living arrangements and bit older may have decided to stay awhile, as I whilst to go back now.  That meal was home...home in everything beautiful and wonderful being home means...

This fox was a gift from my first massage therapy client Kate Hart's husband after her quick and young passing from Gall Bladder Cancer.  Oddly I have misplaced this fox so many times and yet it reappears.  My 4 year old niece will move it for me to make sure I can see it or it can see me...which I find fascinating given she has no idea of its deep meaning to me.


2. Chithra and Neil's Indian Brunch.  I am not an exotic eater, never been a fan of spicy or unusual foods. Give me the down to earth basics.  The last place I lived before moving to Phoenix was this fabulous apartment that leaned to one side that had two entrance doors and my walk in closet in the living room.  I believe I owned maybe two pans, they were orange and heavy that my mom had bought me at TJ Maxx.  I don't think I ever used those pans.  I did not own a coffee pot. It was very "Carrie" pre Sex In The City minus $425 dollar shoes.  My neighbor across the hall was a student at the medical college and sometime into his 4th year his girlfriend, to become fiance to become married and then divorced....moved in across the hall.  I add the extra tidbits because they were from Phoenix and full circle when I first moved there for school they took my parents and I out to dinner....and then about a year later I ran into him with a very blond not his former wife on his side at the mall for a very uncomfortable ohhhh so a lot has happened in a year awkward moment.  Again, I digress...again the food leads to story.  So when his girlfriend arrived she was an amazing cook, and we didn't have air conditioning except one window unit so when she cooked she would open the second door of the apartment that entered the kitchen and I would open mine and chit chat with her while she was whipping up some amazing smelling food.  I would sit on my stool with my pristine kitchen as she explained that curry was not in fact a spice from a jar but a combination of spices.  She even had this fancy spice wheel...she tried to with no luck to teach me...again I was a consumer of other's creations and had little to no interest in the joys of cooking.  So I had been invited to a brunch party they had and don't have a clue of what I ate, just know it has forever stayed in the top 5.

Art by Taylor Rose (age 4)


3, 4 and 5....Yep I can wrap them all together in a big pretty bow....because they were cooked by the same fabulous friend.  Leah's BLT.  Yes that simple...the perfect BLT...ironically at the time I was allergic to eggs.  And we were all at a friend's "lake house" think more Nancy Meyer's movie lake house...and anyways Leah was making everyone omelet's.  As I finally unraveled myself from the Heavenly Bed way before the Westin had that motto Leah made me the perfect BLT....she went on then at the same location to make the perfect Brisket for New Year's and then at her now husband's house a year or 2 later a standing rib roast that melted in your mouth, and caviar mashed potatoes...for all you foodies out there I could go into better details but trust me...they were the perfect fancy comfort meals one could desire surrounded by amazing friends, good wine and laughter...lots and lots of laughter.

Re-telling this feels like I am 90 and reminiscing of a past life so far away that you need to give someone witness to my life.   When I re-tell these stories and I can feel how at ease my life was... it wasn't without nervous energy, a bit of drama, but it was fluid and living....and it is perhaps the worst part of this disease for me living without comfort food as I remember it. The list of foods that I can not eat is so long it is easier to list what I can.  I eat these foods over and over and every time I try to branch out I seem to get punished.  Punished is not take a benadryl and everything settles like a stirred up pond with the chaos slowly descending to a beachy bottom.  It is benadryl, inhalers, face rash...there are not one but many days of being more uncomfortable than I normally am...and thus I just can't go there anymore.

I try not to curse food, because I know there are people that are begging for it, that have no access to it, but there are many a days I feel humbly in their presence.  I have all this food around me that brings me discomfort and sadness.  The food started slowly...at first I just felt a little itchy / uncomfortable after eating....it started when we were living in Napa.  My X (who is a very good cook) in fact anyone I've ever dated knew how to cook...it must have been an instinctual survival guide....some woman find a pull to a partner on a primal level to produce children for our world...yeah I skipped that and made sure they could feed me!  Then it got odd, I kept thinking I was having panic attacks mostly at restaurants...I would get hot, and sweaty and short of breathe..and real edgy...well when you don't know you are allergic to celery salt and most restaurants use it to season it problem arises.

The biggest difficulty about being allergic to so many foods is that is a go to for people to care for you...bring a dish.  It is a mutual exchange of giving and receiving that makes everyone feel good...comforted.  This is just not possible anymore.  One of the greatest gifts I have ever gotten was when my mom had shingles and the Women's Club in Elm Grove put us on their dinner rotation.  Those meals saved my father and I...and wow how there are a lot of amazing cooks in Elm Grove.  What I wouldn't give to be the elegant sick person that someone brings chicken soup and they join me as I lament how nourishing to the self and soul their hard work has gifted me.

My niece Addison brought this to me on a particularly rough day.  At first I did not notice the kind words.  Your Cool (yes Steph and I laughed at that one) Your the Best and I Love You.  Broke me apart and put me together again....
(will teach her your vs you're at a later date)


As I can tell from this very short idea becoming a very long post I could write a book just on the food and the missing of it.  I block it out now, finding it's just too much to add to my proverbial plate. 

Tuesday, June 6, 2017

Transcript

Me and Soph


My current care giver had asked me if I would answer a few questions for a paper she was writing for one of her classes at Madison.  I just realized as I was clearing off my desktop that I had saved my answers.  So thought I would share it.  Nothing really new but my quick first thoughts as I did this assignment.  Also thought very thoughtful of her to do.  The photos are the images attached to my friend's or family's cell numbers....figured kind of interesting...


1.     Can you describe how your daily life differs now than it did before you were affected with this illness? 
Leah
My daily life has little to no resemblance of my life prior to this illness.  The best way I can describe it is that I “think” about everything before it happens…I cannot remember the last time I just woke up and set about my day.  Most days I wake up and my first thought is I am still sick? Then I think about sitting up, think about if I am in my ranch house I can get some juice by myself.  The entire day goes like that…it’s very much in slow motion and if I want to go “do” something which may be a doctor appointment or a short trip to a friend or even someone coming to the house it is well planned.  And often despite the planning…enough to eat, enough rest, etc…it doesn’t mean it will happen.
 My idea of productive now is “did I make it out of the house” or I was able to read a novel without being exhausted or making my own lunch or dinner; which means warming up or taking something someone already made for me out of the refrigerator.
 My plans exist very in the “now” there is no way to plan how I will feel hour to hour or day to day.
However, the one thing that hasn’t changed according to my friends and family is who I Am..but I need to be reminded of that constantly…because though I feel the same on the inside my body prevents me from going to or experiencing anything in the same way.  I “make” it…about a few times a year I have this amazing day where it all disappears and I feel like I’m living a dream or waking up from a nightmare.
 My life before is I got good grades. Went to Boulder, got sick got my tonsils out felt like a million bucks transferred to UWM had a major in Psychology and a minor in African American Studies.  Volunteered at Children’s hospital, joined Public Allies of Milwaukee (similar to Americorps) worked in the inner city as an Economic Development Coordinator – did that for 2 years lived on the East side of Milwaukee traveled all over the US and London and France 3 times.  Got interested in health and economic status, went to massage therapy school while I went back to school for pre med pre requisites.  Had a massage business, lived by myself, went to school – looked at three different Naturopathic Medical Schools – Portland, Seattle and Phoenix again all by myself – not meaning alone…meaning I enjoyed doing things like that.  Decided to go to SW College in Phoenix a city I had never been too…and mostly the decision was because it had a quick direct flight back to Milwaukee b/c I had so many friends weddings and visits I wanted to be able to go back and forth for a weekend.
 Now my accomplishment is staying sane and happy with this new situation.
   2.     Upon the diagnosis of your illness, what were some of the major changes that had to take place? (living arrangements, caregiving, etc.) 
Dad
Like most people with this illness that was the most frustrating part…not getting a diagnosis that wasn’t a psychological diagnosis. I first started feeling not well about the 3rd year into school…even the first two I did notice I could not keep the rigorous schedule.  Early mornings school all day and then nonstop studying.  I didn’t know then that this was an illness I most likely had since Mono at age 11 that went into long periods of remission.  Until my tonsils out at 19 I did not realize how unwell I had felt since that initial mono diagnosis.  Eight years ago CFS/ME was still a very isolated illness, now the internet and advocate groups has changed that. 
My first bad symptoms came I did about a mile and half walk with a friend of mine for years and I started noticing when we were done I would get in my car and be shaking.  And I would go home and just crash.  I went to my school’s medical center got retested for mono but my titers weren’t very high and so I just dealt with it…I didn’t tell my friend how sick I felt, then one day we added this canal to our circle walk and all of a sudden I said I cant walk anymore.  And since we were isolated there was no way to go get a car so I would walk a few steps and then sit down and we just kept doing that.  That was the last time I went for a long walk.  I started changing my class schedule, dropped down in hours…I just adapted.  Then it just got worse and worse.  I had moved to Napa and got a job as a receptionist at a spa and couldn’t do it b/c I could not stand for more than a few minutes.  I had not been diagnosed with POTS didn’t even know what it was till 5 years later.  (Postural Orthostatic Tachycardia Syndrome…basically your heart works really hard just to stand ) I also had lost a ton of weight-I was struggling to stay above 100lbs – I had every symptom of hyperthyroid but my lab was 1/10th off so the doctor said it couldn’t be that. 
I then went to Mayo Clinic and did a million things and my longest visit was with the psychiatrist that said I had suicidal indications – and that I was depressed and anxious…. yes I was depressed and anxious b/c I was really sick and no one was listening to me…no one said “we don’t know”
I went to an endocrinologist at the medical college that asked if I was sure I wasn’t anorexic or bulimic…. after that I was done and had no respect or trust for the MD world – I found my doctor in Phoenix and switched to a completely Naturopathic approach.  She never really said “you have Chronic Fatigue” she said you are really really sick and it’s going to take a long time.  I had a chronic strep, staph, CMV and EBV infection.
I now live in 2 states b/c my doctor is in Phoenix and I can’t deal with the winters I get too sick.  I have a driver or care giver when not in Wisconsin full time.  Here at home my parents do a lot and I have help to ease the burden.  Nothing is similar.  Everything in my life revolves around this illness.
  
 3.     What are some stressors that you deal with now that you didn't have to worry about previously?
Mom
Biggest stress is who will take care of me.  I panic if someone isn’t on speed dial.  And financial…my illness is so expensive between alternative treatments / regular medications/ care givers and not earning an income…if my family was not or continued not to be in the financial state we are in I know I would be bed bound and far worse.  I am able to have a quality of life b/c of adjustments.

4.     What are some buffers (things that ease or relieve some of the stress) that help you push through the stress of dealing with this illness everyday?
I’m lucky that I am not by nature a depressed person.  I get depressed about this illness but that is a very big distinction from someone that suffers from clinical depression and it is important people understand the difference.  Clinical depression is a horrible mental health problem but very different than being ill and being sad.
Steph Cell
You learn who your real friends are and the biggest thing is my closet friends adapted.  And we still laugh and joke and the conversation doesn’t revolve around my illness.  I think when the movie The Forgotten Plague came out that was a turning point for me I could say – watch this – I tried I write a blog which does help ease the stress – I leave it on the page but it was still hard for people to believe how sick my day to day was if they only saw me pull it together for an hour.
The biggest stress is lack of independence and privacy – and then you let it go.  The book How to Be Sick by Toni Bernhard was also a life saver – bc it was things I was already doing and see that was how others coped helped a lot.
 My dog – is an amazing companion.  Bird feeders…I’m not much of a nature buff but looking outside helps. In phoenix I have an amazing sunset view – music… Smart TV.

Jami
For me social media does not help much –it’s not what I would have found important prior to this illness so it is often just depressing and has me focusing on what others are doing rather than what is in front of me.  I can say like with my nieces and nephew whom are huge stress reliefs I can’t take them places or be the aunt I would want but what I can give them is my complete attention – and in this day to day of such a distracted world you would be surprised what a gift that is. 
Haley
Having people to vent to that don’t put too much into it – realize you have to let it out but then let it go.  I focus on what I have not what I don’t have.
 5.     How much of your stress do you think comes from the fact that you are dealing with an illness that there isn't many answers for? What does this make you wish to see in the future? 

Chrissy
The medical community stole years from me and I’m quite angry about that.  I know now that I needed to balance my life and large stresses my body couldn’t handle due to how long it took me to recover from my initial mono at 11. Had I known that I would have stopped way before I did with medical school etc. I also blame them for making me feel crazy rather than say I don’t know.

Then you take the internet plus lack of answers can also be a huge stress…there is no one path and you hear one person do so much better from this treatment or that treatment so you can get pretty lost and into a deep hole of trying so many things… Also if a medical community doesn’t believe you then it’s much easier for your peers not to believe you – and give you all these insane ideas to try…b/c so and so got better doing meditation. Yoga, eating organic etc…

Gosh the future…I think the traditional medical education and the system of medicine is so messed up I don’t even know ..I hope for a quicker diagnosis, that the patient is to be the best indicator of this illness…no one drops out of their life, I hope for a few medications that will help….more trials…ways to prevent.  I hope this illness can unlock the mystery on other illnesses…most of us are very sensitive to the world around us having an over active immune system for day to day scents, foods etc…and it appears this new generation of children have a lot of allergies…I hope treatments will lean towards supporting rather that suppressing and immune system.  I hope I will see it…with the online community, ME Action, the two movies Unrest which is making huge strides internationally at film festivals, and The Forgotten Plague there is progress in awareness and that is a beginning.


(As always thank you for reading.  And ugh did best I could with the spacing transferring this from a word file...also there are many more people's cell phone images I could share...and I'm sure grateful for that...)






Thursday, May 11, 2017

"typical day"


While I was lying in my towel after taking a shower I felt like I may have the words to describe what a "good"/ "decent" day so far is like...I didn't sleep that great mostly due to a shoulder situation which is different story but needless to say I have about 10-15% mobility w my right shoulder, and actually right now typing may not be the best idea...and yes I'm getting an MRI...moving on...

 I woke up about 7am went into the kitchen and got some juice.  Went back to bed, woke up at 8am and thought I'll go turn on the coffee pot.  My mom with a religious fury always has coffee ready to go.  I went turned it on and then debated...if I go back to my room it might be too much to get up again - so I sat on a chair next to the kitchen.  I didn't hear it click on so went into the kitchen and realized it wasn't set up..no big deal.  I open the cabinet and see the grounds are on the upper not lower shelf..that makes me tired the extra reach.  I go to the left drawer where I last (a year ago) saw the scoop and it wasn't there, that makes me a bit fatigued.  I look up and see it on the shelf next to the coffee cups..I grab it and the filter put the filter in and that's it.  All of these menial tasks early in the morning are too much...I debate do I finish or not ...I stare for awhile immobile at the coffee machine and go through the next steps.  How many scoops have we been doing 6 and 6 water?  That means I need to go get the water, fill it, I begin to open the jar with the grounds and like a little league baseball team with a run limit - I call it.


Looking good for 14 !!
I'm not angry, I'm not upset, I'm not really even that defeated.  I sit in the chair decide I can't stand the news so will watch trashy NYC Housewifes from last night and wait.  My mom gets here, feels bad, no reason to feel bad ...she waits on my like a handmaid.  She makes the coffee we watch NYC she makes breakfast, I eat...still on the same chair.  I realize it's quite nice out and go sit on my chair on my front porch.  My mom leaves for awhile.  Sophie decides to get a burst of energy and I feel well enough to follow her around the yard as she is running free around the house.  Walking around before noon, this is a big deal.  I make a mental note and don't take it for granted.   I say hi to my neighbor.   I see my sister and my niece in their driveway, I yell a few times but someone is doing yard work...I debate the walk to the fence - but it feels like to much effort.  I video Sophie and then can't find her and realize she has had enough and is in the house.  When I come in she looks at me like alright enough already back to bed…

I help her up on the bed but I'm feeling pretty decent so decide to take a shower.  Showers have gotten much more tiring without the use of my right arm.  But it still feels good, I'm not too exhausted and then somewhere after shampooing I make a conscious decision that conditioner would be too much work.  Then there is the stillness.  Much like staring at the coffee.  I feel a bit trapped.  I know I need to wrap it up but all the steps to get out of the shower I tick thru my head.  Turn water off, open the door, reach for the towel, try to put towel on without hurting arm, put small towel around hair, dry off.  So I just stand there for awhile in limbo.  Knowing the longer I am standing in warm water the more fatigued I am getting but the idea of the next steps are quite overwhelming.  So I tell myself like a band aid rip it off don't think do the first next necessary thing.  And I do.  I turn off the water....and the next steps I take one at a time.  I open the door step out, grab the towel, put it around  me and my head, already knowing brushing teeth is too much.  I open the bathroom door and Sophie is staring at me and I walk the 5 steps and lift her and crash onto my side.

She comes straight to my face, kisses my nose, licks some water off my hand...feels like she's checking on me....I lie there for about a half hour.  I'm listening to a playlist, Adele is on it and for some reason it hits me that Adele and I aren't the same age...I'm turning 45 in a few days.  This cracks me up for some reason..I have no idea why. A text brings me out of a trance to reflexively grab my phone.  I text with my aunt for a few beats.  The phone is in my hand so I realize best to call my mom now, if I put it down not sure when I will have the energy to grab it again.  I ask her to get me some lunch...which lately the most edible has been hot dog and Jimmie Sundae from Gilles.  I sit up pick out some clothes...get dressed.  My hair is still unbrushed and not in a messy bun b/c I can't tie my hair up without assistance now due to the arm.  I sit back in the chair and decide to type this and wait.

My mom arrives.  I putzed around on FB.  I've sat long enough to get up go brush my hair, bring in the rubber band and she does my pony tail for me.  Often like a petulant child I say ow or that's too low or too high...the frustration getting the better of me.  See I have a nervous habit of taking my hair down and back up that I use to do thoughout the day...not anymore.  I walk over to the dining room table where my makeup bag is and face moisturizer.  I sit on a different chair.  I can't stand to look at my face, I can feel it sore and red.  Detox reaction.  It seems to go in phases, and I know if I'm not super on top of my tincture and pills to help my kidneys detox my face has this rash.  I routinely set about to moisturize, put on some makeup and lipstick.  Back to the other chair.  My mom brings me lunch.

This is my day, this is a pretty decent day.  I have not eaten either meal in bed....highly unusual. I have a friend stopping by at 2:30pm.  I have my college caregiver having her first day today because my parents have a function downtown, leaving at 5pm so I need to have someone here to help with dinner.  I hate that idea, but I know better not to pretend I won't need the help.

I've decided to start Twin Peaks on Netflix since it's coming to Showtime.  Today so far had pretty many accomplishments that my old life would laugh at calling them accomplishments.  Lately I vascilate from ...vascilate is spelled wrong...spellcheck isn't working...I don't have the energy or quite honestly care to google it....but back to "vascilating" between a longing of my old life that is visceral in nature, as if that whole other life was a mirage and the person living it I'm not sure is exactly the same or unrecognizable.  My liver hurts.  I know most people don't know what that means, but it does it feels swollen and irritated.

It's 2:20...my friend will be here shortly.  I am going to figure out how to get the video I took of Sophie on this blog.  And that's a wrap.  Tomorrow will look similar to today.  Maybe better maybe worse...

Thanks for reading - my brain is tired and the thoughts quite uneloquent...typo...oh well...see the beauty of this illness, that's the small stuff I don't sweat the small stuff.  xo xo H

PS  This past Saturday or maybe it was Sunday...I made it to my nephews soccer game on that beautiful day...just sitting there on one of those outdoor chairs just like anyone else...


Wednesday, March 29, 2017

Few Chips…golf not potato that is

Camelback Mountain



One of my biggest challenges is that it takes most of the day before I start really "waking up" so to speak.  When an article awhile back called this the Dauer State illness similar to hibernation I get that; that's a bit how I feel everyday slowly trying to awake or get adjusted from a deep body sleep.  When I'm in Phoenix what I struggle with is that I need the help from morning til after dinner and often right when someone is leaving I begin to have a bit of energy.  Like last night, the temperature outside was ideal but I am in a pickle so to speak.  I can't really try to go for a short walk or hit a few golf balls because I need to rest in case I get sick in the middle of the night, or Sophie decides she needs to eat again or go outside downstairs, or just in general if I even take a shower and then crash what will I do.

Still bit confused with the U


Last night I decided to put caution to the wind and go hit a few chips.  It was absolutely beautiful outside one of the few remaining evenings I am guessing that will have even the slightest chill in the air.  And that is what is most frustrating at times.  I hit about 6 chips and then used my "U" aka utility wedge that I've now used twice to hit towards the tee box.  Walked to get the ball and walked back inside.  I felt quite good indeed.  Which is what makes being awoken at 3am so hot, sweaty and nauseous all the more frustrating.  I was up from 3 am to 4 am.  I do my new found ritual of looking at FB messenger b/c it makes me feel a bit calmer knowing there are a few random people, especially on the East or Midwest, that have begun their day.  I got sick and then felt a bit better.  I slept til about 5am when Sophie decided she needed to go outside, luckily I have a little grass patch that she uses on the upstairs balcony.  The two of us fell sound asleep, out of shear post sick exhaustion…a bit of okay the worst of the sick is over and now your body can relax.

What amazes me is every time I still wonder, did I get food poisoning?  Do I have a flu ? Despite this happening so many times.  It's about 11:30am now and I still can't' get any food in.  I really can't swallow anything well because it feels like it gets stuck. It could be a bit of post chipping fatigue. Then I wonder could it be I moved some things with the most walking I've done in awhile yesterday?  So maybe it's a good thing?  I can sip on coffee so I know it's not the flu.  So I wait. Repeating it will pass.

And I had last night which was perfectly lovely.  Oh how lovely it was….

Attached is the interview with Jen Brea of the film Unrest in Coppenhagen…it is in English after the first minute and a half.  I got through about 5 minutes and I just couldn't….just hits too close to home but please watch and share….

Thank you all for reading and supporting.  And I wanted to make sure I shared the good moments and so grateful I live in this lovely condo.  I do that at night too…I focus on the pillow and how soft my sheets are and how Sophie is in the crook of my legs.  How I have nice music to listen to and that somewhere 4am is 6am and mom's and dad's are busy getting up for work and their children's school and it doesn't' feel as lonely.







Tuesday, March 28, 2017

Bruised and Battered on the Streets of Philadelphia


Thank you to all the advocates for ME/CFS

I play this song a lot.  Over and over often while at the doctor getting a treatment especially if it isn't going well.  My UV Blood Treatment infused with oxygen is quite simple.  Blood is taken out goes into a glass container as if you were giving blood then after it's collected the clamp is released and it goes through a micro filter, then UV light all while being infused with oxygen or ozone. It's simple but tricky because those of us with this illness have low blood volume, blood with infection is often think or you are dehydrated, heparin is added to prevent clotting.  On good days it can be think about 20 plus minutes.  On bad days almost an hour…with often the vein deciding it doesn't want to take this blood in, so then there is a rush to find a new vein that will take it and if not then this was all for not.  I use to get really scared when this happened.  Not so much anymore, I know to close my eyes move my arm often in uncomfortable positions and my doctor is quite cool under pressure.

So Streets of Philadelphia. I play it because one it's oddly soothing.  It reminds me of the people that have suffered much worse before me.  Having an illness that they had to fight for funding, fight for treatment, and fight for dignity.  Top that off people were scared of them.  And the end result in the beginning was certain death.  We lost a friend to AIDS.  He had worked for my dad throughout the years.  He was a talented decorator, and my parents took him under their wing when all was collapsing in his late teens early twenties; pre AIDS.  Just that early pre mid life what am I going to do with my life 20 year angst.  The saddest part was that years later he was so happy, in a committed relationship with a kind, caring doctor.  They had a beautiful home and garden close to where I live now.  I drive or ride past that house most days I leave my own.  In the weeks before he passed his partner had a group of close friends over, I think I was in my early 20's.  Todd was up in the bedroom too weak to come down so people went up for a few minutes to say their hellos which we all knew were goodbyes.

It was an eclectic group of people.  Sitting there it felt more a part of a Nora Ephron movie than real life.  HIs partner left Milwaukee after Todd's death - stating it was just too hard to be in this area he needed to start over.  My mom's front garden still has many of the flowers he helped her transport because he couldn't believe she didn't have one!  I laugh now thinking he would be so thrilled my parents finally remodeled their house…he was a bit snobbish about that.  He had had a really difficult upbringing and early adulthood only to find happiness and then have it taken away by that horrible disease.

I was really healthy at the time.  Never did it cross my mind I would fall into an unknown illness, that has stigma, a different one but stigma none the less.  I've decided to try the main drug that is part of the Stanford protocol Valcyte.  Of course this princess can't seem to find a drug or treatment that isn't insanely expensive, fancy even in my illness (sarcasm).  What is interesting about Valcyte is that it was first used for AIDS patients to combat CMV (cytomegalovirus).  To be honest I was very surprised my Naturopathic Doctor is so on board.  I'm a bit concerned about side effects, the unknown, but as we discussed if looking at course of this illness after I got sick with recurrent EBV a few years ago I had an acute bout of CMV.  I didn't have any signs because I was already ill but when doing a EBV panel we added CMV just to rule out thinking I would have had antibodies, not expecting an acute onset.

I have a bizarre full circle calming feeling about the connection this drug has to AIDS patients.  And our community has really looked and studied their community and amazed at what they did to demand an illness not be demonized.  So perhaps my connection to Bruce's haunting words I can only hope is a foreshadowing of hope I hadn't seen coming.

I don't often share photos of what my week looks like but decided this post seemed fitting.  The following were taking over the course of 10 days and I am very grateful for my friend giving me home IV's when my veins cooperate and help the Blood treatments go better.  I am grateful for my doctor constantly being open minded and a rock of support.

This post is dedicated to Todd.  You were a joy and are missed but never forgotten. And all those that every day fight for funding and knowledge to help solve this disease. #CanaryinaCoalMine #ForgottenPlague #MEAction….




I was bruised and battered, I couldn't tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn't know my own face.
Oh brother are you gonna leave me wastin' away
On the streets of Philadelphia.

Chills after treatment


I walked the avenue, 'til my legs felt like stone,
I heard the voices of friends, vanished and gone,
At night I could hear the blood in my veins,
It was just as black and whispering as the rain,
On the streets of Philadelphia.







Ain't no angel gonna greet me.
It's just you and I my friend.
And my clothes don't fit me no more,
A thousand miles
Just to slip this skin.

View looks like the ocean
Night has fallen, I'm lyin' awake,
I can feel myself fading away,
So receive me brother with your faithless kiss,
Or will we leave each other alone like this
On the streets of Philadelphia.


Thank you for your music

~ Bruce Springstein


Saturday, March 25, 2017

When We becomes Me

Blue jeans.  It's what I do when I feel a lack of control over the ever changing symptoms…I put on blue jeans.  Seems that one can't be that sick if you are wearing denim.  We use to dance and laugh in my friend's mother's basement to everything Neil Diamond...especially "Forever in Blue Jeans.." And often when I grab mine in this not so pleasant state that song and memories play in my head...and the Blue Jeans served another purpose, a pleasant distraction to a different time and place.
Embrace

It's a pretty universal truth that through a course of a lifetime by circumstance or choice "we" becomes "me".  I've found oddly the easiest "we to me" transition was the end of my 10 year relationship in the midst of this illness.  It forced something that wasn't going well for either of us to end. The most difficult part was that he was no longer a part of our extended family anymore.  Something I know he cherished.  My grandparents became his.  Not having a traditional family, this was the hardest to watch be lost.  I'm sure that is what propelled us longer than good for either one of us. It still is difficult, I miss him often but it was the right decision.  When we could "do" things together life was much easier …of course.  But I ask many to try and hold a relationship up when everything you love to do is taken away.  Our shared love of activities certainly had masked our insufficiency's.

The hardest "we to me" transition many face comes through natural life stages, empty nest, loss of a loved one or transitional times when friends get married, have children and their associations broaden and change.  This already difficult transition for me however came simultaneously while I was  getting more and more ill.  More and more confused and more and more isolated from the world around me.  I just didn't see it coming that I was no longer apart of this "we" friendships that I had cherished and cultivated for 20 plus years.  But then there are these rare moments in a really somber occasion that took me back to being part of that "we" and remembering what it is like to pick up after 5 years of not seeing someone and feel like it was yesterday.  So this is that story....
 
I had a pretty idyllic childhood.  There was chaos around me that I was completely unaware of that could and probably should be a story in of itself if I ever get to writing it.  Sure I had the mean girls issues, the not the greatest at sports situation going on, but I always had really good friends.  Sometimes these friends left me for cooler groups, but despite that hurting at the time I had a pretty decent perspective that it was self preservation and not really about me.  Not to say it didn't feel that way.

Funny how life works, lockers.  Yep, by alphabetic order in High School.  Lockers and homeroom; DRE and DRO of last names is how Mel and I reunited as friends.  We had attended Dixon Elementary school together until it closed after our 4th grade year.  So we all scattered to the other elementary schools in the district and then would all be reunited in one massive cluster F of a middle school for those two brutal years of 7th and 8th grade.  Those two years are a messy blur of post mono chaos.   We then dispersed to one of two High Schools.  At BCHS that is where the alphabet Gods looked down on me and Mel and I reconnected.

Mel and I recently attended the funeral of our close friend's mother and as we all sat there mulling old stories we reminded the "group" that we were epic dorks unlike them in High School.  That was until Melanie made the "Freshman 40" and bless her heart I came along for the ride.  Melanie is gorgeous.  It's not a matter of opinion - it is a fact.  And for some reason in High School her Greek/Serbian background dark hair got the Whitney Houston curl.  Whitney's epic music video had come out and Melanie had that look and bingo…this "underground newspaper" the closest scandalous thing our school produced came out with the 40 hottest freshman girls…. and she was on it.  So she was noticed, not just by the guys but by the girls.

Melanie and I kept our epic dorkiness well in check as we laughed about during the wake.  As we all discussed that the "cool" girls would meet each other in the bathroom before school and exchange clothes; we were not nearly cool enough to be a part of the clothes exchange.  Then we got ourselves in hysterics laughing; side note this is one of the things I miss most about being sick; spontaneous conversations that lead to belly hurting laughter.  It is a very different experience when people come to "visit" you…there is no spontaneity, depending upon when they last came or how updated it is a lot of how are you doing, anything changed, any new treatments.  But in this circle of friends in the middle of a wake was the closest group activity with my girlfriends I have had in about 5 years.  I was grateful I had done my diligence to prepare and be able to feel well for that precious hour.


CARDED


Melanie and I started reminiscing about my epic failure of a sweet sixteen birthday.  Another girl from our class and homeroom we asked to join us; and as Melanie said she was probably just being a good sport while rolling her hazel eyes at how did she end up here.  My parents dropped us off at the movie theater to see Casual Sex.  Yes scandalous.  It was a movie with Victoria Jackson from SNL and Lea Thompson; pretty innocent for having the word SEX in it; but nonetheless R rated.  And no joke, this greasy haired 17 year old in an ill fitting tux with a bad bow tie carded me.  You read correctly I was carded at the movies on my 16th birthday.  I'm not exactly sure if he wouldn't then let us in to any movie knowing we would just go to that one, or there was nothing remotely we wanted to see.  However I know he wouldn't even let us in to use the pay phone - even as we said 2 people will wait outside the ropes.  So we walked to the nearest McDonald's to call my parents to pick us up.  At this point remembering the entire thing, I really thought my little weak spleen was going to burst wide open with tears running down our eyes at the absurdity of the situation.  Luckily for me it was the age of John Hughes' movies, so I had 16 Candles to console this less than remarkable coming of age…however there was no Jake in a red convertible…oh well.  My parents hadn't forgotten.

We were in our own little word.  That took us to remembering when we stayed up til 4am to make some hideous pants.  Those were how our Friday nights were spent.  The trip down memory lane in a group of old friends with shared memories was a gift I haven't had in a really long time.  I hated why it was happening; this was now the 4th close friend that had lost a parent.  We are now at the age our parents were when we all first met.  It's a unpleasant feeling of time passing.  Generations shifting.

NEVER WORN
Soon after my epic fail of a 16th birthday by my 17th everything had changed.  We slowly actually became really close friends with a larger group; most I still have some contact with today.  Others are as close as siblings and save me day in and out with this illness.   The night before my 17th birthday I was home and about 5 of my guy friends stopped over to see if I wanted to take my dad's 1968 Mercury Convertible out for a drive down Hwy 100.  I remembered I went into our refrigerator in the garage to see if they wanted something to drink and though was always well stocked with drinks - it had every imaginable soda in it and thought that's strange.  So we all left and made up and down drives cruising Hwy 100 most likely ended up at Gilles a custard stand.  Most likely also losing a hubcap off the car and someone going to chase it down.  My friend Mark and I had looked for that ill fitting hubcap on many a side roads after a quick turn.  Again laughing, always laughing being in a field searching for a hub cap…and the relief knowing my dad wouldn't freak out if it couldn't be found.

Then the next day when I got home that evening "surprise" there were about 20 people in my basement for a surprise 17th birthday party.  Oh how a year can change everything.  I got a massive stereo system  - Stephanie bought me my first ever CD Journey's Greatest Hits.  My friends found the "dance costume bin" and well I'm in Phoenix otherwise I would share some hysterical pictures from that night.  We laughed a lot.  I just remember Junior and Senior year as lots and lots of laughing.

At this awful occasion; I was given a gift it was the first time in a very very long time I felt a part of anything.  I felt young and healthy again and at ease as I was all those years ago.  I knew what it had taken to get me to this hour and I knew how long I would pay for it…but I had made it.  I could understand how people there wouldn't believe how bad it can get.  How sick I am 95% of the time because I didn't look sick, didn't act sick...but many things fell into place.  First, the funeral home is less than 5 minutes from my home.  Second I gave myself time from flying home til the funeral.  The two days after the flight in I could barely move; and I hydrated and rested complete bed rest to hopefully gain some strength.  My parents came to make me dinner before, I know the right clothes to wear that distract, I know to find a chair immediately.  But I can easily understand until you are with me 24/7 for a few days that I seem like a mirage of an illness.  The next day I couldn't get to the church until it near ended, and couldn't make the lunch after.  All I could do was crawl back into bed....

I am forever grateful I didn't get sick before most of my friends got married because we took these epic Bachelorette weekend trips.  This was the "we" the "Ladies" I was part of most from high school with the addition of some good friends my friends had met in Madison and beyond.  It wasn't a clique it was a group of friends that despite physical distance found a way to still find time once a year at least to get together.  I had traveled to Atlanta to see where they lived for a brief time, then back to Atlanta for one of those Bachelorette weekends.  Vail for another.  Huntington Beach for another.  Then the weddings.  Then the baby showers.... I look back and think where did I let everyone down that all of a sudden due to my circumstances I was dismissed from the we.  Did people not believe me…were lives just too busy…. was I not communicating...




Which is in part why I started writing this blog.  I kept missing or canceling on things.  And then glory be to god forsaken Facebook was blind sided when I saw the former "we" minus "me" all kicking it up on the rivers of Colorado.  To say I was heartbroken would be an understatement.  No one told me.  Of course if they had asked I wouldn't have been able to go.  I had known about two other yearly trips to Madison.  60 minutes away, but for me mine as well been a continent away.  I got it; same routine Madison was the epicenter.  I tried once to make it, got half way there and felt so sick - with my mom driving had to come home.  I guess I was just shocked; not once did anyone think maybe we could go to Milwaukee instead of Madison and then we could do some stop in at my house or hell party while I listened.  But the trip to CO without anyone calling to say hey we know you can't do this - but we will send pics or something - it was as if I had disappeared or died and no one cared.  Or people justified "well you can't do this anyways" or the of course "you've always been anxious"….yes I have always had a cautious nervous tendency and dealt with your drunken asses like rounding up puppies for years and laughed and enjoyed every second of it.  It never stopped my life dead in it's tracks.

I slowly realized I had lost my group.  I tried. I called two people and laid it out there…this is incredibly painful - no one comes to visit, no one sends cards, I know everyone has children and husbands but if situation was reversed I would be the first to rally around not rally to ignore.  That the isolation and not being part of a group added to the pain.  In the end one person said "I will do better." It was the greatest gift one could be given.  No excuses, no "buts" just listened, heard and put away pride and not only did better exceeded better which has transformed a once solid friendship to a life line.  Others, well I grieved and realized we would always be friends, I loved and cared about this group of people - but I felt I was back to being the 16 year old -a bit always on the outside looking in.

It has taken me a long time not to be angry.  I used Tony Bernhard's wisdom that I don't know what is going on in their lives; although that was part of my frustration -  I wanted to know.  It wasn't just about me it was about me no longer being witness to them.  The reality that I don't KNOW their children or their lives broke my heart.  If I was well I would be the first to drive to see a soccer game, attend a graduation or a play.  I could not come to them yet none of them was coming to me.

I struggle often writing this blog; writing your story has to include other people…and I have aimed always to share my experience with doing little to no harm to others.  My caregivers often comment and people that know me well talk about how I am quite funny in real life but my blog isn't - and it's true - I laugh as much as I cry.  Often it's survival at the absurdity of this illness and all the bizarre drama that comes with it and maybe that's another book or blog.  This is my escape.  And writing funny takes more talent and energy than I have.  The oath as a doctor is First Do No Harm.  I toe that line often with this blog…to tell my story there is no way around sharing someone else's.

I ask myself what is the goal, is it self indulgence or is it to educate, purge, explain…I look at a lot of "funny" writers or well received memoirs and they often by necessity have a take no prisoner approach…I have plenty of stories like that in the vault like we all do and I tread the line of what is thoughtful and truthful.  What is private and what should remain a secret.  This is important to me to clarify; I don't believe these people don't care about me, but I think perhaps they forgot how much I cared about them. And the pain and burden one feels by constantly saying "I can't" when living with this illness.  It feels like failure to oneself and to those you care about.  No one gets out unscathed.  That is the one constant, but we including me can just try to do our best.

This post is dedicated to the moments that are stamped in my heart.  To accepting change.   And lovingly to DRE/DRO . xo xo dresko.

Money talks
But it don't sing and dance
And it don't walk
And long as I can have you here with me
I'd much rather be
Forever in blue jeans
Neil Diamond.

Saturday, March 11, 2017

Nails

Biltmore Sprite


I need to trim my fingernails.  I've been telling this to myself for about a week.  I look down and think my niece would say first thing if she saw me, "Heather you're nails too long."  Funny, most 4 year old girls you would think like long nails.  Not her.  But I don't paint them.  I don't like polish on my fingernails' toes always.  I'm not sure if it's the fatigue or depression keeping me from the nail clipper.  It seems like a momentous task. I haven't been out much.  Canceled the doctor on Monday; I was so dizzy or lightheaded the thought of riding in the car made me nauseous.  When I talked to my doctor by phone she said just try moving a little.  My mom's college friends were in town and they were at the resort pool; so with the steady resolve of going to a doctor appointment my care helper drove me the 3 minutes and waited in the parking lot.  I got a lot of smiles and cheers.  It felt exhausting and demoralizing and apathy all at once.  I put on a good smile, a red suit and fancy sunglasses and returned the feelings of joy that my mom's friends extended.  But I didn't feel it, I faked it...This use to be my domain; queen of the fancy.  Now I robotically made it here, get in the water walk a little, swim a little, and get out and look from the pool to the main entrance thinking you can make it back.
Entrance
You would think it would elevate my mood.  I hadn't made it to the pool all year yet.  It seems to do just the opposite; because there is no momentum with this illness.  Just because I made it today means nothing for tomorrow.  In the evening my legs ache with abandon.  My body doesn't want to eat.  The food, same food I've been eating for 3 plus years now I can barely glance at.  I should be grateful.  I made it to the pool…the should's they get you every time.

I talk to my friend on the phone and tell her this feeling of depression is new and I don't like it.  It's my birthday, it is looming in front of me, I normally love my birthday…but this year turning 45 just reminds me that I thought this would be over by 45 not still in the thick of it.  And nothing feels luminescent as I glance forward.  I'm aging; which means my parents are aging; and my beloved dog is starting to clearly show the signs of her almost 14 years.  The next day I text the same friend and declare, "I'm going back to being a glass half full person, the half empty is a drag and it's the same amount of water."  Or something like that…maybe if I declare my optimism it will be forced to comply.

I was watching the pre-game show for the Bucks, and one of their stars Jabari Parker had just completed the second knee surgery in 3 years.  Means of his three year pro career 2 he will have been sidelined for…and he said "the glass is half full" and I laughed to myself.  Okay, you and I have that in common.  Then he went on to it being bigger than himself and God only gave him this challenge for a reason and he's going to come back a better player.  And that's when it gets to me…the choice to work hard and get better.  Now there are no guarantees he can work really really hard and maybe this second injury he will never be the player he could have been.  But the act of working; that's what has gotten to me…how do you work hard with an illness that punishes you for trying.  What am I trying for?  Have I gotten so use to being sick I don't even know how to be well?

All I know right now is around 6pm I got up and got the nail clippers and trimmed my nails.

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