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 first I just felt a little itchy / uncomfortable after 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 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


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? 
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.) 
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?
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.

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. 
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? 

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...)

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