Friday, November 18, 2016

Nothing left to Do but Write

It is the fear.  I think fear has begun to run through my veins like an elixir that I cannot purge.  It's unpredictability of symptoms that just when you think you are steady a wave of nausea, diarrhea, light headedness, kind of feels like someone just slipped you a roofie at a rave.  The rave is the disorientation searing throughout your body and lying down even feels unsteady.  I hate that I go to fear; I think the physiology is the rush of adrenaline when your body has the sensation it is going to pass out - this surge then lingers and leaves me reaching for the nearest phone.  My lifeline has always been the phone.

November 3, 2016
Highest of highs bring lowest of lows
Just when you think you have turned a corner...
This week I have sat with this fear for going on 48 hours.  If anxiety is a wave not to be fought but to be surfed- this is a monster that refuses to let up.  Periods for woman with this disease are notoriously difficult, one more thing for the liver to process.  After my genetic testing revealed the double mutation to help detoxify estrogen among other drugs; interestingly the first drug when I was losing 30 lbs quickly was an antidepressant.  I went through 3 different ones half the smallest dose and still my brain felt foggy and I would often not be able to find my words.  Well bingo…there is a medical answer to that.  So now with my age, and peri-menopause rearing its welcome, it is one more thing on the proverbial plate that is getting heavier by the moment.

My parents left Phoenix on Monday.  Monday I had my first new attempt which was an hour and a half  IV.  Had the half hour drive home and collapsed.  Four hours later the insane cramping, weakness and drunk like feeling began.  It is Friday, I have cried more times in the last 4 days than the last 6 months.  I have reached out -knowing I'm upsetting those that I love with my absolute desperation that there seems no answers for.  My precious dog is beginning to show her age so I need to carry her up the steps.  The sun is shining in Phoenix and yet all I feel is the storm approaching and I have no cellar to crawl into.

I don't know what to do anymore.  I did try a new doctor who thought throwing a bunch of pre-cursors to hormones due to my low functioning adrenals would help…think we know the answer to that experiment.  I have discussed trying the anti viral and heavy hitting anti inflammatory drugs; but my history handling these meds hasn't been great.  Trying new things with a body that isn't acting by the rules is absolutely terrifying.  I see others that have gone to "the best" CFS doctors in the world and they are completely bedridden.

November 3rd I had 3 good hours.  Really fantastic, joyful hours.  People can't understand how that is possibly good enough…and that is because they have no idea the storm that could be on the other side.



Thanks to my friends and family that have answered my 3am phone call with calm words and no judgement.  I'm so tired.  Most days I don't have time to miss my old life; managing this new one is so complicated and exhausting.  But lately, mourning is all I seem to be doing.  I really liked my old self - and me and this new body aren't getting along very well…we have moved from mediation to full on nasty divorce.  I just am scared about who will win.

Tuesday, November 15, 2016

I will Grieve…In My Time not Yours

I've been reflecting a lot, like many, why the Presidential election results have taken me to my knees.  I've reflected on what were the true sins of Secretary Clinton that were dire enough that a vote for the other candidate was justified despite things he actually said and things he didn't really even say he would do.  History will be written about this, blame will be given but at the end of the day the result is the result.  Hillary Clinton will not be the first woman President of the United States - and that hurts.  I've come to realize my grief for her not winning has taken two paths.  The first - one that I believe many cling to; the absolute unpreparedness he showed during the debates and secondly repulsed by the fear he sold and the groups he bullied.  The second path is one much more personal and attached to my current state of health; the realization that I did feel connected and understood and was living vicariously over the last 18 months sharing this journey with her.   In fact longer than that since I voted for her in the primary against President Obama.  Being mostly bed and home bound I poured over media coverage, watched all eleven hours of the Benghazi hearing, read all I could.  The last 18 months I felt like this is it, this is going to happen, and while everything else in my life is so uncertain - I could sit in bed for the next 4 years and watch Madame Secretary's journey as Madame President.  Then the results started coming in and as Hillary Clinton's dream was shattered, the glass ceiling firmly intact,  so have been my own.


Public Allies 1995
First Lady Michelle Obama would later become a Chicago Board Member
My Path


The cognitive dissonance is the best that I have to explain Republican educated middle and upper class whites voting for Trump.  Choosing to excuse his speech because of a faux familiarity with his billionaire and celebrity status over the last 20 plus years.  Those also being a group that have for years and years and years had strong feelings that Hillary Clinton is a liar, untrustworthy, even some to go so far as a murderer combined gave rise to the ability to vote for her opponent despite the racist, homophobic, xenophobic, sexist and often bizarre words he would say.  He was correct, it appears he may have been able to "shoot someone on 5th Avenue and people would still vote for me." What does it take when the leading members of his own party can not say his name, no former Republican President thought he was ready for the task at hand, and all while giving slogans in place of policy.  I could understand those who this economy and direction of the world is leaving behind.  I could understand holding on to dear life when manufacturing that was the backbone for so many years for a good life now forces people to work longer, for less and often end their days with uncertainty and no pension.  I could understand those that don't see our place in the global world throwing a Hail Mary feeling what do they have to lose.  I could not understand the arguments from friends or family that are educated and financially stable to take such a gamble; when their own party wasn't willing to.


As I see more and more people getting frustrated at the vocal opposition to the President Elect and declaring don't you dare call me a racist these are the good deeds I do, I pause and the best explanation I have is that they or someone they love weren't viscerally offended by Trumps words.  Most of the people I know that are getting very angry with people not "letting go"of this loss are one of or a combination of the following; white, male, attractive female and financially stable.  Period end of story. And I realized that they have not been "hit" so to speak.  I wrote on my Facebook post when someone told me to "chill out" that the worst thing he said about white males were their "knick names"…"Little Marco (he falls in between) "Low Energy Bush" and "Lyin Ted".  The women he went after were much more personal and always went to looks…"That Face" for Carly Fiorina.  The most bullying was when he went after Ted Cruz's wife by posting that extremely unflattering picture of her and compared it to his super model wife.  Entrenching the stereotype that a woman's value is connected to her "beauty".

I am 44 now, living in a body that has betrayed me. Besides being frustrated with my changing body and lack of muscle tone due to this illness I have come to appreciate my looks for the most part.  But I can remember a time when I sobbed that I just had to get a nose job after a male classmate said I "looked like a witch"- and years and years later every time I looked in the mirror all I saw was my ugly nose.  I am at a point in my life that I understand where beauty radiates from, the difference between looking at a person in awe of their outward beauty they were blessed with and separating that from defining who they are as human beings.  So while the attacks on women's appearances I found offensive- they did not shape my world view of myself.  I wonder what do little girls think that heard this, teens and those finding their way…our President Elect has certainly made it clear what female beauty means to him.

When he railed against Mexican Immigrants and then declared his judge couldn't be fair due to his Mexican heritage I sympathized, knew it was wrong but wasn't hit in the gut.  Our democracy is built around justice being blind…did he really just say that?  When he proposed a ban on Muslims, in AMERICA a ban on religion…this rhetoric frightened me from a historical perspective - how have we lost our way that our country was founded on the separation of church and state, a refuge for religious freedom.  However, since my religion doesn't define me by color or creed I didn't feel it the same as a woman wearing a Hijab.  I didn't need to fear walking down the street.  When he insulted John McCain as not being a hero…well that was so insane I laughed it off.  I literally laughed it off.  But what about our troops that could be captured, what about John McCain, I doubt they laughed it off - it is and was their reality.  All while this man lied about having a high draft number and instead had a bunion.  He chose to go after a Gold Star mother inferring she was quiet possibly because of her religion she wasn't permitted to speak.  A claim that mother then felt compelled to address and say no her grief not her religion had her speechless.  Then in comparison when pressed by a journalist of his biggest sacrifice; he paused and reflected on it  being a busy business man. Again, these statements were so beyond my world view I didn't feel his words in my bones.  I found them hitting me at a distance; like watching movie.

And then it happened, I had begun to get "hit".  First, The Access Hollywood bus tape.  I find it to be a cruel irony that NBC found Billy Bush needed to be fired, while America chose to hire.  I listened to those words over and over and I thought, this country has been working and working to understand college and acquaintance rape and yet "locker room" talk became the cognitive dissonance applied.  I listened and what I heard was what many are finally understanding rape, sexual assault is about Power not Sex. If we ever didn't understand that - now was our chance.  I think it is important to read the entire transcript.  The power is twice, going after a married woman…seems that was as important as her beauty.  And doing it because he is a star.  Let us not forget this was a man well past puberty, past middle age and was not in a locker room.


“I moved on her, and I failed. I’ll admit it,” Trump is heard saying. It was unclear when the events he was describing took place. The tape was recorded several months after he married his third wife, Melania.
“Whoa,” another voice said.
“I did try and fuck her. She was married,” Trump says.
Trump continues: “And I moved on her very heavily. In fact, I took her out furniture shopping. She wanted to get some furniture. I said, ‘I’ll show you where they have some nice furniture.’”
I moved on her like a bitch, but I couldn’t get there. And she was married,” Trump says. “Then all of a sudden I see her, she’s now got the big phony tits and everything. She’s totally changed her look.” [ i would personally argue this statement is easy to inferyeah I lost but she isn't attractive anymore so doesn't matter, he needed to insult her after she turned him down…]
At that point in the audio, Trump and Bush appear to notice Arianne Zucker, the actress who is waiting to escort them into the soap-opera set.
“Your girl’s hot as shit, in the purple,” says Bush, who’s now a co-host of NBC’s “Today” show.
“Whoa!” Trump says. “Whoa!”
“I’ve got to use some Tic Tacs, just in case I start kissing her,” Trump says. “You know I’m automatically attracted to beautiful — I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait.”
And when you’re a star, they let you do it,” Trump says. “You can do anything.”
“Whatever you want,” says another voice, apparently Bush’s.
Grab them by the pussy,” Trump says. “You can do anything.
My friends and I talked at length after the Stanford student rape case - that unfortunately seemed to get more attention and petitions than these statements by the President Elect.  We discussed how fortunate we were growing up with boys that were men before their time.  My guy friends, are the ones that would have been pulling the man off, not the other way around.  These statements were the first that made me viscerally feel like throwing up, that made me disgusted that any man or woman could excuse this as "locker talk".  But that was the spin and it appeared to work.  And of course they were given the gift of President Clinton's past to some how now Hillary was equally at fault for the discretions/sins of her husband.  Bingo - they pivoted.  
The second time was the mocking of the disabled man.  Oddly though it didn't happen right away.  It happened after the election was over.  When I first saw that boorish behavior fitting of a sad, insecure kindergartener I again just shook my head.  But for some reason when Secretary Clinton lost, and my helplessness set in my first thought was the vision of the President Elect mocking that man; and I thought to myself he is mocking you too.  I hated that thought, because it forced me to again force the painful reality that my life is not independent anymore.  I depend on people to do all of my day to day cooking, cleaning, grocery shopping and the list goes on.  People may see a photo of me and think "she doesn't' look sick" and have no idea that was a moment in time and everything that it took to prepare for and the inevitable days in bed it took to recover.  Secretary Clinton's shocking loss made me grieve my loss of independence in a way I hadn't before.  I took stock of my lifetime of achievements prior to this illness and realized we were on some level on similar trajectories.  Despite not coming from a traditional religious family, I lived those words, "Do all the good you can, for as many as you can, for as long as you can."

I had early in life, second grade actually, remember first learning about Martin Luther King, and the atrocities of our countries past.  I followed a path of service and had every intention after Medical School of returning to the underserved area in Milwaukee that showed me the impacts of health and poverty.  I had hopes to going to MU night Law School… I had a plan and the loss of Secretary Clinton stung me in the heart, I did see myself in her.  I did look past her faults, because she is human and I saw that none of these "sins" were done at the expense of country.  And I reflected that if I was well what would I be doing now?  Would I switch paths and begin to get involved in politics?  I am young enough - but not able in body or mind anymore.  I realized that when President elect mocked that person for something they had no control over - I felt that in every cell of my body.  Whether you lose your body to illness, accident or born with disabilities no matter how high your self esteem so many things are taken from you.  For me, the daily struggle is to not feel less than, because no matter what anyone says - it is the painful truth.  I am less than my former self.  Not in spirit, not in grit, not in compassion - but in the ability to act - I am less than.  And in that loss, when I at first thought of seeing him mock that man - I felt detached and disgusted.  In the moment after the loss I felt rage and disdain.

So I continue to implore those kind hearted individuals that keep asking us to not worry, give him a chance, concentrate on policy.  I ask you to please humble yourself and sit with the question did his cruel viscous words hit YOU.  Not "your gay friend" or "your black friend" or "I have no problem with Muslims…"did they hurt YOU personally.  Did they make YOU feel less than?  The same people that are asking me to move on often are the ones that despite 7 congressional hearings refuse to accept the answer that Benghazi was not a criminal act of Secretary Clinton's.  That after a FBI investigation, her apology continue to be enraged over her emails.  That in all those emails, 3 had a body of the letter "C" classified - not a header.  That by all accounts all they found is that she was in words of Bill Maher a "boring political policy nerd." They still play the "I could have stayed home and baked cookies…" as a rally against stay at home mother's rather than her for a moment not being politically correct and instead say - lay off.  I went to Law School and I want to work.  I ask you to stop forgetting that she was a Rodham before a Clinton and was the first student ever to give a commencement address at Wesley.  I ask you to remember she went to Law school at a time when there were 3 woman in her class and she was chastised for taking the space of a man who could then be drafted.  I ask you to ask yourself what part did sexism play in her threading a line constantly between emotional and stoic.  I ask you to stop pretending she is "different" than other women.  To pretend sexism didn't play a role when her pneumonia seemed as big as a headline as Trump not releasing tax returns is a blind eye to double standards she has lived with for years.

Allow me to have my grief.  If Secretary Clinton; inarguably the most qualified person to run for the office of the President, had lost to John Kasich, Jeb Bush, Marco Rubio….the list goes long - this loss would still sting but I wouldn't be fearful of its long term consequences.  Let me grieve that on a national debate stage when a woman was schooling her opponent on policy he looked into the camera and said "what a nasty woman."  Let me grieve for the idea that our country voted for the idea whether the President elect acts or not the suggestion we screen for religion.  I felt a bit like Cinderella, not only did she lose her mother but was replaced by an evil manipulating step-mother.  That is who won, that in my greatest of hopes will not be who leads.

However, respectfully let me grieve for myself.  For the fact that I am not technically, not kind of but actually disabled…so my routes to action are more limited than many of you - I have a computer screen and my words.  I have hope I will be someday be well again.  I have hope that I can find a trajectory that will have as much meaning as my old path I had worked towards - but I often need to choose.  I choose my energy for my friends, my family and my work at healing.  It is on one a hand a contrary life to the one I had lead, recently a friend who I don't see often when we exchanged messages said to me the following:

"I think of you so often but don't vocalize how much I worry about you and grieve for the life you deserve"

I thought so much of that statement.  What is the life we deserve?  The best I can come up with is we deserve to live our truth.  This election has taught me much.  It has taught me the words my father has said from the moment I can remember, "life is not fair."  It has taught me that I am blessedly at a point in my life where respect is more important to me than being liked.

The phrase "Sticks and Stones may break my bones, but words will never harm me." Kept coming to mind and I thought - could we be more wrong?  And so I did a bit of research and found the historical context of the phrase is quite relevant.
The earliest citation of it that [ I ]can find is from an American periodical with a largely black audience, The Christian Recorder, March 1862:
Remember the old adage, 'Sticks and stones will break my bones, but words will never harm me'. True courage consists in doing what is right, despite the jeers and sneers of our companions.

Tuesday, September 27, 2016

Carry This Canary Home


This has been a very long day.  And I want to thank my family for always stepping up.  It is hard to be this isolated and people say what can I do??? And you tell them and often all you feel is crickets.  Or you look at friends with this illness and their friends rallying around changing profile pics - showing their shoes, reaching out saying It's Okay - We Will Carry You.  I am tired.  There are a few hours left to make a mark on getting #MillionsMissing Trending.  I'm embarrassed to do this - don't really like doing this and I said earlier I do it for those that missed their 20's that I was gifted.  I do it for those fighting so hard for change.  I do it for those that can't move, can't speak, and don't have the resources I have.  I don't even know if I do it hoping a big cure will come - maybe it will - maybe it won't but at the end of the day I can rest knowing I did my best.
This was my last post for the night on FB - the only social media I am on.

Not going to lie. I have been a bit discouraged by my efforts today for#MillionsMissing. Believe me I am TIRED of this too. But the last two days I have suffered…really really suffered bc I tried to do too much on Saturday. And I Was TERRIFIED…did I really F this up…will this be a week, a month, will this headache, nausea, body pain, body paralysis, sound intolerance, food intolerance, night sweats, end…will it ever end. So I googled twitter and googled instagram and I have been lifted up. Lifted up by others…I am not asking a lot …I GIVE everything I have to SHOW up for OTHERS. I am asking something very simple. For ONE day to change a profile picture. For ONE day to put your shoes out…it took me over an hour to get the energy to walk to my front door to do this. We have a few hours left. See who is with me. Bless you all who showed up. John McCain on Twitter. 2,401 on Instagram. Bless you all. The point is to TREND…to have people STAND WITH US…for ONE DAY.



#MillionsMissing

Today is the second #MillionsMissing day of protest and awareness for CFS/ME.  My hands are trembling as I write this post.  As I said to a sufferer's mother last night -I am just too tired to be both advocate and patient.  So I am going to choose one.  Advocate for others when I can't feel I have the energy to do it for myself.  Isn't that often the case…we can push for others when we can not do for ourselves.  How can you help…you can go to www.millionsmissing.org and they will walk you through.

And you can put your shoes outside, take a photo with #MillionsMissing and post to any or all social media accounts you have.  If I have ever missed something of yours - I never wanted to.

I miss you.  I miss me.  I miss everything it meant to live in a body that was healthy - Freedom.

Thursday, August 25, 2016

Curled Up

I watch Sophie curl up as tight as she can at the end of the bed.  I know how she feels.  I would like to curl up and close my eyes and ruby slipper it back in time.  I feel frozen much of the time.  I think the majority of my days are spent waiting.  Waiting to feel well enough and fill in the blank.  Waiting to feel up to eating.  Waiting to feel up to taking a shower.  Waiting for the gnawing cellular discomfort to pass.  Waiting until like a wave crashing over me and takes this feeling away.


This will pass.  Sometimes in an hour, sometimes in a few often in a week.  But it will pass and then some relief comes with no warning and no explanation.  Last night it was in the form of Kopp's custard.     All day from the moment I woke up I waited.  I hydrated.  I took supplements and prescriptions.  I did inhalers and relaxation breathing.  I attempted a movie, a distracting text and phone call.  I waited lying silently curled up and just kept thinking it will pass.  It will pass you can not force it - but it will; you must believe it will.  It will pass if even for a moment.

I had my summer helper arrive at 5 pm to fix me some dinner.  I sat up and stared at the rice and chicken, salad and asparagus.  The same meal I've stared at a hundred times before and I waited.  Start with one bite.  One bite and the next may come more easily.  Slowly making my way thru with the quiet of the room I took another.  Twenty minutes later and a quarter of the way thru it came to me - custard.  I need something dense - so Erin left for chocolate and vanilla and I encouraged myself to take another bite.

When she returned it had been nearly 40 minutes since the plate had been put in front of me and I had eaten a bit over half.  And then began eating a spoonful of custard and my whole body felt like it screamed thank you! We needed calories, density, easy.  Nothing to chew and another fifteen minutes went by and at 6:45pm after an entire day of waiting it all melted away.

I got up and finally cleared all the magazines and catalogs off my dining room table - a task that I didn't want anyone else to do but had alluded my energy for the last week.  I grabbed the frames from the closet in the playroom and my helper put some photos I had ordered two weeks prior into them…the frames that have been in the closet for 2 years.  I threw the cover for Sophie's pillow and a bath rug into the dryer.  And then it started to slip away, and my bedroom called once again.

That is what a day looks like.  It is difficult for me to have people in the house while they are doing - it looks like I am doing nothing - but the nothing is something - it's strategy, it's talking myself off a ledge and it's waiting.  Waiting for a moment to see if it arrives.  

A few nights prior - Monday I was able with my mom to take my friend's daughter back to school shopping.  Start to finish with driving was less than 2 hours.  But I was present - and able.  Not able to switch stores when I realized Nordstom Teen department in Milwaukee is nothing like it is in Scottsdale.  Not well enough to go to the cafe and order a drink or dessert.  Not well enough to drive her myself.  Not well enough to have her come over and maybe watch a movie or spend the night.  But well enough to get the task at hand completed and be present.  That is the thing nothing is like before, nothing isn't strategized or manipulated to appear different than it is - but it must be good enough.

I think about Sophie curled up at the end of my bed or on her pillow next to my pillow and think she isn't thinking is this good enough.  Yet, it is all I need.  So maybe I can learn a few lessons that good enough is often all any of us need.

Tuesday, August 9, 2016

"rare"

I found this article under "rare diseases" which is probably problem number one…however the article itself is very informative on how the United States really re-named Myalgic Encephalomyelitis to Chronic Fatigue and put all the emphasis on the "fatigue" where all of us living with this disease already know the Fatigue is like the tiniest piece of the puzzle….

Rare Diseases Article…really Rare???
http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

I know for myself yes the fatigue aka mind numbing exhaustion is always a re-bound effect…however the reactive airway disease, constant sore throat, difficult digestion issues, insane food allergies, chronic pancreas pain that waxes and wains, headache with the slightest temperature increase, the sensitivity to smells, irritation with noises….the list goes on and on.

Every day I just can't believe I can not find a solution to get out of this situation.  Most of all it steals living…you have moved into surviving and fake living with the utmost dedication.  Everything is managed and highly controlled and the person you once were is a distant memory to yourself.

When you have an illness there is this desire for our society to remind you then you must "carpe diem" - but a unrelenting chronic illness the only way to seize a day is to find a moment and to work really hard to save up for that moment.

What I miss most lately is eating.  I just got the invitation for my friend's daughter's Bat Mitzvah and I thought mother fucker I am going to miss out on all that good food.  I'm not Jewish but have managed to amass a large number of Jewish friends - and I think in part for my ability to devour brisket and kugel and my happy indulgence of the Jewish mother feeding me.

Unless you have food allergies you can't imagine when food now has become a war zone of land mines.  The basic necessity of life has betrayed me…how to you begin to fix that?

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