Scrolling photos

Christmas Eve 

During the Holidays it’s especially important to be mindful that a photo is just that; a moment in time that illuminates that split second but rarely tells the entire story. As the phrase goes a picture tells a thousand words; which is true but behind those words are thousands more left unsaid. 

Personally, I need to remind myself of that as I scroll social media and longingly remember how I loved the Holidays; and it has taken a long time to find some peace how they have altered. How much of what I loved has been chipped away over the years. 

The Holiday season has a tendency to magnify feelings we have often buried for the entire year. I am not alone comparing this year with those before nor comparing gatherings of others to my own. Often with a wistful envy. 

I hope it is helpful to hear a bit of the context behind these shots from my Christmas Eve. 

The photos above for instance if someone scrolled by would have no idea it is only the second time in a year I have eaten a dinner at a dining room or any table for that matter. It’s hard for me to be completely upright while I eat. I get a bit lightheaded and try to eat but the process is tiring. The hours before this shot were not pleasant - my doctor had called with some test results. I was feeling the weight of trying to be “up” for my parents and frustrated that I wasn’t the one making a dinner. To keep it simple I was a hot mess. Through grit or grace and makeup on I pulled my tired body and soul out of my room for the early evening. 

It was wonderful to have a meal with my parents sitting around a dining room table; where Daisy joined us. She patiently waited til some steak was placed in her bowl; and a few handed to her.  A few times I lamented that all the food I loved was not present; mashed potatoes, peas, sweet potatoes etc all now come with a flashing warning light. I was debating to be a bit risky and make a White Russian as memories of my glamorous Park Avenue roommate and I would have before we went out in college. I decided a new drink wasn’t worth the risk of not being at the dinner table. 

Simultaneously, while being sad for what I no longer could consume and how difficult it was to be even at the table; I looked around at my charming home and a great weight  descended acknowledging all those this year that were struggling to put any food on the table. Fellow Americans by no fault of their own or lack of independence; some never before were now depending upon the kindness of strangers filling up food pantries to have their basic needs met. The families counting down to evictions or wondering if their job will ever return. Perspective. It is easy to get lost in our own challenges especially when those of so many are so daunting. The families that are mourning a loved one that is not there.

Our minds can hold so many conflicting emotions all at once. Grateful and mournful. Celebratory and solemn. This becomes the paradox of the Holidays; joy rarely stands alone. 

As dinner was finished; I felt well enough to help clean up. Then I decided to open one present from my mom’s friend which was a beautiful plaid shawl. It looked very Scottish and I was transported to a scene in Outlander; my summer binge.  Oh could I ever be as tough as Claire? Well perhaps with this shawl I could pretend; she was a doctor after all and I’m named based on my Scottish roots. Could I lean upon a stone and magically be transported to another time and place? It was a lovely surprise as I had wanted something plaid but hadn’t told anyone. 

Then my mom told me there was a present for Daisy.

Nothing has been more shocking to me watching this little girl understand and love getting gifts. Apparently we have something in common. She slowly looks in the bag and tries to get the gift out and in startled confusion pops her head out and stares at the bag.  Similar to a child’s reaction to a jack in the box. I wish I could get the video to load; until then take my word it had us in stitches laughing. Once she removed the little duck  she was whipping that toy around showing off the hunter DNA she certainly won’t be using under my guide.  And there I had it after an entire day of forceful emotions an hour of just being; just being in this moment. Unencumbered by the omnipresent weight. Ease. Joy. How it use to be. 

Waiting for more...

My parents and Daisy left for the evening around 7pm. I got into bed and began my personal tradition; watching my favorite movie The Family Stone. My mind wandered of Christmas’s as a child where we had big family gatherings and all the chaos that ensued.  I never imagined myself married or with children; I did however imagine myself arriving from some random city with someone I loved to participate in a big family celebration. The individual much like Meredith in the movie being scrutinized and analyzed by an array of this loving but sarcastic and tough crowd. 

Never did I imagine most years I would treasure the quiet of Phoenix alone or if home participating in such a limited manner. My mom and dad; rather than myself taking the reins on whatever our new tradition would have become. However, as the movie is playing its impossible not acknowledge how blessed I am that my parents are here with me. It’s easy to see what you don’t have when what you do have is right in front of you.

All of a sudden I was a bit startled as I heard a car horn beeping and a large group of people outside my bedroom window. I was on the phone with my friend and said I think people are cutting through my yard to look at my trees; oh no wait they are singing! Had I just fell into the Hallmark channel?  Outside in the frigid night air my Aunt and Uncle and my cousins families that are in town were Caroling!  I opened the window pulled up my chair and took in this serenade of kindness; singing through masks in this unusual year. In a flash I had that big family back; even though I hadn’t left my bedroom. It wasn’t The Family Stone; it was my family and I was so grateful. ( Even though they didn’t manage to bring Ben Stone with them...)

Memories are a double edge sword. They are a mirage that can lift your spirits, reflect on how far you have come and also how much has changed. They can bring boisterous laughter and heartbreaking tears. Like the photographs we scroll through some reflect the moment while others show a sliver of the moment captured; leaving the before and after up to the viewer. Be mindful; what you are viewing may not be the story one has attached to the image displayed. Don’t ever diminish your story while watching snapshots of another’s. 

I hope each of you reading this had moments you can hold onto that become memories you will cherish. Repeat the sounding joy best one can. 

xo xo H 

Ghost of Christmas Future

Prologue

The last post that I wrote and didn't keep reverting to draft was Borrow My Belief. That has been over a year and a half. While I have been editing this one and seeing ones I move back and forth into the draft purgatory I noticed the date of that last post... March 15, 2019.  I had such hope a year ago March that I would find some freedom in body and mind. I hadn't realized until now how much I had believed those words until March 17th stripped them bare. Prior to mid March 2020  I leaned on faith when Daisy entered my life those pleading sad eyes I didn't have a chance - faith said say yes. It was also in January when for three months I had been  making sustained progress that I finally let myself hope. Hope this time next year I wouldn't need as much help. I would be able to handle being in AZ with just the help of Christine. Perhaps even in WI, I wouldn't need help at all except some drop ins. This is  what I dream of; independence.

It is only now, tonight as I am nearing the end of my go to calming series Felicity that I am processing how a year ago I thought I might actually be free of this illness. If not free; certainly not as bound. Then came March 17th 2020 and as my befuddled brain and finicky blogger platform and computer converge; I am going to need to borrow some more or take the time to even have belief.  Words it seems like so many aspects of my life right now feel a step behind. 

After Sophie passed as I had said I thought I would end this blog. I did in name only. That time frame I lost my words as my world had altered; in time I adapted and life started to find its new equilibrium. Then came March 17th, and unlike humpty dumpty I didn’t fall of the proverbial wall something shoved me off the ledge and I came crashing down. When I landed all was left were broken pieces of myself - trying to not only put them back together again; but even find them proved difficult. I use to write in my head and my fingers were merely the vessel. It doesn't come easily anymore. Writing has become as hard as most days; its organic nature lost and like most days everything feels forced. Therefore forced and stuttered it is - this is. 

I am searching hard to believe. Believe I can get back to before March 17th 2020 let alone before this illness ever struck. While at the same time there is a collective dismantling of the world; it too has fallen off kilter and is cracked and broken and much like my body not sure how it will be put back together again. 2020 is coming to a close and things aren’t magically going to change when midnight strikes; at least not the world but maybe a little bit of me and you ....even if I don’t believe I will try. But what does Yoda say...There is no try ... that’s about as much as I remember from this very non Star Wars follower. No try ... only do ? can ? ....well here is the best I’ve been able to write...

March 25, 2020

 

I've been trying like everyone else to do my very best during this pandemic. I'm learning that everyone's best doesn't all look the same. Some by design, others by omission, some by selfishness others by oblivion. While most mourned not being able to be with family over the Holidays; I mourned being dependent. This dependence meant my exodus to Phoenix was not as easy as it would be for others. I depend upon others; to help with my meals, walking my dog, helping with laundry, so that I can have a few decent hours some of the days. I can not complete a day by myself; it’s a paralyzing statement albeit true...for now. While others were mourning yet another thing missed, I was mourning being present. Phoenix isn’t even my dream city to escape to; that doesn’t diminish my gratitude for its consistency. But more than anything after a summer normally of missing things - it’s my retreat for some solitude. It is when I feel like I can exhale after trying to participate in my hometown where there is always something or somewhere I am inevitably disappointing in my early exit or failure to arrive. However, this is 2020 so nothing is normal. 

During the pandemic my mom has been my only caregiver. She was with my "team" in Phoenix for two months as this was not the first time someone quit with no notice and within 24 hours she got on a plane to come to my aide. It was March 17, 2020. The day before the NBA shut down and I had a talk with one of my college age caregivers that her spring break to New Orleans didn't appear feasible. She was over an hour late and then I learned later she had been sobbing on the kitchen floor downstairs because she knew I was going to mention spring break. Oh my the luxury of such tears. When I hired her I told her this isn't an easy job and you must have thick skin. She said she did; assured me over and over again she didn't take things personally. I said here is the thing everyone says that; very few mean it. You are an extension of me. I feel sick even when you can't see it, most nights I don't feel well so when you come in the house in the morning often I've been dealing with a mini war with this body throughout the night. I don't want help, I have to have help. This is not Real Housewives of Scottsdale with a staff. I don’t want you here  so I will get snippy, I will not want to talk some days, I will be a huge pain in the ass and it is not about you. It is about me for the last decade trying everything I can to get out from under a disease without a clear diagnosis nor clear treatment path. She assured me again and again and over the next few months again and again I would be apologizing. It's not you, it's me.

Well COVID hit or started rolling in like a tsunami where just when you think there is calm everything gets swallowed up and she preemptively quit. So March 17th, St. Patrick's day my mom arrived for what we thought was going to be a short visit until I had the schedule figured out. That never happened, she stayed for the next two months until we left together, nothing as planned. March 17th was also the evening I said I have a really sore throat, and then my lungs began to burn and my body hurt in a different way it hadn't before. Eight days later I finally emerged from my bedroom and made it downstairs. The initial two weeks is a complete blur; I didn't really even think it could be COVID. I am sick a lot, feel fluish a lot but everything about this was different. It was the first time I could feel a separation from my body and an illness. Normally we are one. It is very difficult to mount a fever with this illness; and I didn't but I felt like I had one and was drinking 3 liters of water a day without a second thought. I had no taste for sugar ( I could taste and smell). I also had a weird rebound energy where I knew I had to do lung exercises and did them religiously. It was strange because it never crossed my mind that it could be COVID; yet I also haven't had an acute illness in over a decade. I think I was so sick I didn't have time to analyze what it was I was talking with my doctor, doing my nebulizer breathe in breathe out best you can and sleeping. Is it COVID? I think it crossed my mind but my doctor seemed unfazed. I was vigilant thou in a way I had never been before. I was so grateful my friend and distant reiki guru helped me get centered and breathe every other day. I took absolutely every tincture, remedy and supplement I was told. I was 100 percent compliant. Numerous times I felt scared; but not the fear of COVID this was before the enormity of the pandemic; just afraid because my reactive lungs were reacting. One of my best friends months later said in 25 years that is the longest I have gone without talking to you ... it was ??? Yes she said. If I called you could barely speak and I would just say go back to sleep. Huh...it was bad. 

I still had our other help and downstairs was a flurry of getting supplies, stocking the refrigerator, washing things constantly. My help is always very conscious and I was isolated in my room so it doesn't surprise me no one else got ill. I isolate often. I still remember being able to make it downstairs it was the end of March and it was the first time I had spent anytime with my mom since she had arrived. It became apparent my mom wasn't going to be leaving Phoenix;  to this day it is the longest she has been apart from my dad. I wish I could say I could understand that more viscerally; but I just can't anymore. I live my life in 6 month segmented fashions. I've been single for a long time now. I depend upon the people that care for me and except for Chrissy that has been a revolving door of amazingly kind and competent individuals to the polar opposite which have included assholes, to weirdos, to comically horrible at their job - but even that has been a constant.

I saw my doctor every two weeks during this time frame keeping to my schedule that I would be in AZ until May. I never got another blood treatment but did get a few IV's the last one I was too weak to get a vein even for saline. After making the most progress and feeling the best I had in 8 years I was now back to before. My mom and I flew back in mid May; our flight had been canceled and my Dad during the COVID chaos and the arduous time of me being ill, my mom being solo and my new addition Daisy had us fly home private. Now this was basically my fancy life dream...the gratitude I have no words for but the experience I was numb. My ears were still constantly plugged so I felt sea sick the entire time; and this adventure was coming at a financial cost but more importantly the reality that everything had changed; even knowing that I couldn't imagine how much. 

Peace

It took being back in WI where everyday I had intense deep body aches, every evening a headache that I would put my hands on either side of my skull as if to keep my brain from exploding and then the fist full of hair that I lost did I finally wonder had I had COVID? I am high risk with asthma; but historically individuals with Myalgic Encephalomyelitis even thou a viral infection is most often the source of the immune system going awry we also have both a hyper and hypo reactive system. Therefore, the cytokine storm that could be responsible for some of the issues could be more difficult for someone with my illness to produce. It was all these after effects none of which I had ever experienced before, certainly none for months on end that made me wish I would have done a COVID test at the time. I did do a finger prick antibody test at the end of July and it was negative. However most of my research between my possible lack of large antibodies production and the time frame a negative just means no longer. I wish it had been a yes to be sure; but it reallt doesn’t matter. What matters is that for 8 months I was back to forcing through a day. Everyday.

My body often aches and feels old but light touch is what irritates me. These were deep body aches like having an acute flu. Christine who helps me gets migraines; I mostly can tell when she is dealing with one and always acknowledge how lucky I am that I don't get headaches. Yet now every night almost 6pm on the dot when the sun would set my head would just throb. And the hair, my goodness the hair. I became scared to wash it or touch it as clumps were coming out in my hands. Robin, who cleans for me said in her kind of back handed sarcastic way "my god your hair is everywhere I can't keep up with it"...yeah I know. It wasn't until the middle of November when these symptoms finally started to give after changing some medical protocols and I have sprung baby hairs that spike up in the morning that the most logical conclusion was I had had COVID; and my body acted like a long hauler...as I like to call them short haulers....

I couldn't comprehend it had been 8 months of dealing with more acute symptoms on top of my normal baseline. Last January my helper Sarah had commented I saw you on the golf course I think 3 times in 2019 this year and you've been doing 20-30 minutes 4 days a week for two months now. I can't tell you what that felt like. I was going to kick this...I finally had given myself a little sliver of light to believe that. Now nearly a year later - I can't find the words; truly I can't. I also in the after math in those 8 months dealt with clinical depression. 

If you have followed me I have written often the distinction between being sad or down because you have an illness and clinical depression which I have never suffered from. This was again a new revelation. I will say of all the post March 17th symptoms the depression scared me the most. I have had variations of pain and mild hair loss but the absolute apathy a void of oblivion I had not experienced that before. There was more than one day I didn't want to do this anymore. Not in a dramatic hysterical I can't take this fashion, a more resolute I see no light. I see no joy even thou I know it is in front of me; it is out of my reach. I will hold on but I certainly don't want to. I just added this; I feel like a lot of this time I had blocked it out - I haven't been able to write or journal - much of this is coming back as this writing like trying to grab words when they float in front of me, an effort. The effort is a luxury in of itself to feel well enough to try- to do.  The fact that I need to try so hard at one more thing that had come easily makes me feel less and less like myself; whatever myself even is anymore. Those pieces...I’m searching for those pieces hoping when found I recognize them. It’s like when you lose something and you know it will turn up; and often is hiding in plain sight. I feel as if these pieces are scattered all around and I’m expected to scavenger hunt my way back minus the clues.

I have a different grief that I have been struggling with; one missing not just the Arizona winter but Christine. She is my family. Over the last seven years since I poached her from Nordstrom Spa she has been my rock; no pun intended as she calls my condo complex Fraggle Rock - and for that reason alone you can imagine how much I miss her. She is a better extension myself than I am. She not only is incredibly good at this job; she somehow in spite of not knowing me before often seems to see me the clearest. She reminds me I am not just taking up space. She is the most unspunky cheerleader one could ask for; and we laugh we are always laughing most often at each other. Everyday she finds the absurdity in this illness and when I'm at my lowest will make some wicked comment or we have elaborate stories about the people we see on our slow walks. She is the gift I never saw coming; she would roll her eyes but she has been a real life guardian angel. She is ferociously protective of me; because she sees it all. She finds the cruelty more than I do. If you have someone that never fails to have your back and sees the best version of you; that is a blessing to hold on tight too. There is a mutual respect; she is the person I spend the most time with over the last 8 years and it may be a year and  half before I see her again. 

My mom has a much more difficult job she has to see her daughter struggle every day just to be, not to be the doctor she went to school for or the lawyer she had thought she may become. Not struggle with where to travel to next or volunteer at or create a career. Struggle trying to participate in what was once normal life: a dinner out, hosting parties, running and golfing. It is a thankless difficult job watching someone you love suffer - I know her or my dad would change places in a heart beat and if they could I wouldn't let them. I wouldn't let them because this is easier than watching it - I've been the witness to illness and it is a different kind of helplessness. Selfishly I wouldn't want to change places.

I also miss my freedom or kind of a pretend freedom of leaving one home for another. This pandemic was the awful mirror I not only try to avoid now bc of my hair loss and weight gain but because it highlighted my lack of dependence. I often can take mental breaks; but knowing people have to distant when you depend on people has become the reverse fortune of compound interest. The pandemic has also highlighted how abnormal and challenging a confined life that I have lived for the last decade really is; because now there is a mirror and support for all those struggling - I know it is hard. I just didn't realize how hard when it was mine alone.

So here I am staring out at my beautifully lit fir trees which was a splurge to myself for needing to stay in WI for the winter. When I was deciding my parents said it's not just for you think of how much you enjoy other's lights. And it has been so true nothing has brought me more joy than these lit trees in the dark winter nights; even more the unexpected notes and hellos from neighbors and strangers  saying how much they have lifted their spirits. How they change their walking route. The little unexpected joys, gratitude. Always seem to feel better gifted than received. 

My mom has been wrapping Christmas presents that my dad will drop off at my sisters while most days I'm still having a difficult time until evening of feeling very decent. Today I had made it outside to throw the ball for Daisy and came back into my bedroom. I was staring at the tv no interest and sat at the dining room table my head in my hands and just started to cry. My mom asked if I was okay; and I said no. This is going to be over for everyone else and yet when it is my life isn't going to look much different...everyone has been living a mini version of my life and yet it is still bigger than mine for the past decade. All I see and hear on the tv is how to help people cope. The world has opened up with everything being live streamed to help everyone get thru this; yet where has everyone been when I have been crying out that this is hard. I haven't enjoyed a casual dinner at a restaurant in over 6 years. As I cried to a friend one day worried if someone got sick who would help me - I can't even cook for myself. She laughed and said when did you ever cook for yourself! Of course you don't use your limited energy on something you never enjoyed in the first place. You never owned any pots or pans - all you did was eat out and then you never dated someone who didn't love to cook...must have been one of my few Darwinian survival skills. Laughter. Someone who remembers my life before; such a gift.

I remember when I was young my family always went to see the Christmas Carol. The entire play had me sad; not just the ghosts - actually the ghosts were the least of the problem. It was the orphans and the beggars the haves and the have nots. The regrets of the dead the loss of hope for some in the present. I was thinking a lot about the play the last few nights thinking everyone has been given such a gift. The ghost of Christmas future has come and given the warning; and not just people dying from COVID but the small percentage but significant number that are and will be in this long hauler aka my world category. I think to myself what I wouldn't have given for that towering black cloaked Ghost of Christmas future give me a roadmap to try and defy this fate...you do these things you can lessen your chances of the life you had built falling like a house of cards and needing to rebuild it all over with a far different playing deck. We aren't even going to give you cards, you will have to figure that out yourself. 

As I watch so many individuals; and I don't know their reasoning. I have some theories; one of which is no one sees the personal fruits of their sacrifice. There is no one handing out a blue ribbon for the person you might have saved or the person who may have saved you. Whatever the reason; this has been an incredibly difficult time to see your life change in a blink of an eye. Things that once felt secure be taken away. Freedom of movement restricted. But for most of you this will pass....this is a moment in time. Take this moment and learn from it; be proud of how you handled it. Please do better than your best to make sure of it. I would have done anything to be given a warning; some tools to possibly sail my ship differently. And when this awful veil in our history is lifted; what I ask of you is not to forget those it left behind. I am still no where close to where I was touching moments of freedom last November - March. It feels like a cruel joke to have made the most progress and then be taken down. My brain still hurts and I'm finding more difficulty than before finding words. Although as the phrase goes you never know what's on the other side of the mountain...if I hadn't been the strongest I had been perhaps this story would be very different. I will continue to do my best, and hope on many days it's better than I hope. Peace. To the New Year. Hang on.

This is dedicated to as of today the 330,941 Americans who have lost their life to COVID-19;  many of whom died alone; No one is a number. This is also dedicated to Amanda Kloots; whom I have immeasurable respect and gratitude that I stumbled upon her story and grace. Rest In Peace Nick.

To the 1,726,522 World Wide Deaths as I write this. 

This is also dedicated to the current estimated 10% of all infected that are looking at a possible non full recovery. UC Davis and Harvard Health are looking at...I can only hope this will open the door for the over 1 million Americans who have suffered with ME/CFS for longer than this pandemic has existed.

UC DAVIS LONG HAULER 

 HARVARD TRAGEDY OF COVID LONG HAULER

NOTE: I would argue the tragedy is that ME/CFS has been so maligned for so long where there could have been answers there are not.

"Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.

Dr. Tedros Ghebreyesus, director of the World Health Organization, also has expressed growing concern about the chronic illnesses that may follow in the wake of COVID-19, including ME/CFS."

 Finally, in my blog from a year ago I said I was consulting. I am and this moment in time has made me uniquely qualified. So you may call, text 602-300-4870. Or find me on Instagram at DaisyMae.33 I am charging a what you can afford. If you are reading this you are not alone. And I will do all I can to help; if there is a silver lining my insight has met this moment. Be well. 

A few resources for Long Haulers. 

HEALTH RISING 

ME ACTION

Finally to the front line workers, essential workers, health care heroes who have held the hands of those someone loved. Thank you. There has been so much pain; may we begin to heal together. 

 

 

Had I known

I have a very distinct memory of wondering how anyone could think walking was exercising; I could walk all day. Fast forward as I'm pulling up my pink and navy striped compression socks, strapping on my heart rate monitor, lacing up tennis shoes that are foreign as a Geisha wrapping her feet.  I opened the door to a muggy fall like evening. This was the first time I've used the socks to walk to see if they will help with my excessive heart rate from POTS (postural orthostatic tachycardia syndrome). A hint, you don't want to be diagnosed with anything with "syndrome" behind it. Syndrome is code for oh fuck we don't know why this happens or what to do about it, so primary care will send you to cardiology, cardiology will send you to neurology and the circle continues. I knew I was too tired to walk, I knew but I wanted to prove my body wrong - prove my mind wrong. It didn't work. The socks didn't work the humid air made them feel so tight against my calves any benefit was lost with the irritation. I came home and peeled them off and collapsed into the cool oasis, a magic cure these were not.

I don't walk in a loop when I am alone; I walk back and forth like the spindles of a bicycle wheel where my home is the center. These are the things I do now to adapt. Things that never before would have crossed my mind by just walking. The word "just" no longer applies to walking. So I go out and back to the starting place and evaluate and then head in a different direction from my literal home base. I do this so I don't need to bother anyone, the what if I get too far and my legs won't work the embarrassing task of calling when I may be less than a half mile from my home. It is a struggle for me to walk a total of a mile at one time. My body always seems to tell me when I'm at .8. As I type this I still can't believe this is true.

When I've had a few good days in a row which has been rare lately I often choose dancing in defiance. I haven't danced in defiance in over a month. I see my heart rate go up and up and up and I don't care if I feel awful or get lightheaded I can sit on the floor and I'm already at home base. If I pay for it the next day so what; I won't leave bed knowing at least last night I danced alone in my living room. Only conversing with Alexa who never listens to me to skip the song or turn up or down. I don't even care she ignores me.

If I had known some day walking over a mile at a stroll pace was going to be a challenging task in my mid thirties I would have laughed. I would have said it's a joke; walking?  I will always wonder why "walking isn't exercise" popped into my head; at least when it did I was running. 

Borrow my Belief

Goodbye for Now

I seem to have lost my words. This photo I took last year on Sophie's birthday. March 28, 2018. She was 15. It was as I may have said or not before a comedy of errors with a tri-pod and and a cactus mishap but I was determined. Deep down I knew it would be her last birthday. I have a lot to say, but I just cant' seem to find my words. Although it is a bit easier since I dusted off my old computer. However, since Sophie's passing I felt like a bit more of my identity has been whittled away. I was the girl with the cute little white dog walking through the airport. Now I am alone walking through the airport. That coupled with a combination of medical or age related issues I have gained nearly 20 lbs in the last 5 months while eating less and moving more. This has messed with my head, messed with my jeans - well my entire wardrobe. But more importantly as I cried last night realized it wasn't so much that I was angry. I am scared. This is one more thing that my body seems to have taken. How much more can I lose? I have always been thin, and never once took that for granted. Now, without warning one more thing it feels like this illness has stolen from me. This illness I often feel like there is a sculptor chipping away at me bit by bit as I try and hold onto my sense of self and just when I think I've got it they come back to etch a bit more from me, in this case the artist decided to throw on some more clay.

Getting ready has also been my main coping mechanism fake it til you make it. I never don't get dressed and now nothing fits me and what does I don't feel good in. So between losing Sophie and now losing the size I have been for nearly 8 years has all been a bit too much. I looked back at photos since I began this blog and so much has changed and a lot has stayed the same. The most amazing thing that has changed is I am not alone. I no longer need to define or explain this illness there are mountains of resources and movies and research going on. Not enough. But enough where I can switch from hope to faith.

So with that faith, I am ending this chapter or phase of this blog and going to take some time and re invent myself in some shape or form. I need to find a new way.  I also no longer want to use the name - Chronic Fatigue, it is demoralizing and I no longer accept it. I am working with a counselor who bless her heart said you don't need counseling - you need use your gift and your knowledge that this illness has handed you. A few years ago I would not have been able to hear that nor believe it. ButI am getting there. She said you have everything but the faith in yourself and that is just doubt. She said until you get there, "borrow my belief" and I took those words to heart. What a beautiful gift.

So this is my soft opening so to speak, I am going to begin a consulting business for those navigating a new illness. I would especially like to focus on children or teens with ME since if treated quickly they are the most likely to be able to recover. I'm not exactly sure how it's going to look and I'm learning to be okay with that. I just know that I have spent many hours on the phone or texting with people helping them either understand what has been prescribed or be a sounding board or helped find resources to find a better suited doctor. Most importantly I know I can not only listen, but hear and help try and put some pieces together to lessen the pain and be an advocate for their healing. So message me, it's me and a phone - that combination has always been a winner... as my dad said my first year at Boulder, hey Heather AT&T sent us flowers this week to thank you for your usage!

Finally, I just can't continue this blog without Sophie sitting next to me. She is on my opening photo she is everywhere in this blog. I have said goodbye to her and it feels right to let this chapter end with her also. She was my side kick and my unconditional support. When I got back to Phoenix after her passing I was shocked to look out my balcony and I snapped a photo the Torry Pines that merged together the one on the right looked dead. By that evening as the sun set where those two trees once overlapped there was only one. The one remaining still leaning to the right, but now alone. I stared at that empty space for a long time, and still do and shake my head of the timing of it all. I realized they are in the background of the photo above.

In my gut and heart of hearts I felt when she left I would be well. And while my new treatment has gotten me much better daily energy it is not close to my old self or old life, but there is a stability and a change. Neither of which I have experienced in years. When I started this blog I was explaining symptoms to friends and family on why I kept canceling plans. I was exposed to the core trying to figure out what was happening to me. And now, well now, there is a network of more than A Million Missing. There are documentaries, facebook groups, writers and bloggers, advocates and a tidal wave of change that at times seems monstrous and other times feels like a drop in the ocean. And it is with that change that I need to push myself to somewhere that scares me, to define a life with this illness. As I battle that fine line everyone does between acceptance and cure. There is room for both, I've decided or perhaps Sophie decided for me it is time to reclaim a little that was chipped away. And that is creating a unique career for myself. I'm putting my foot into that metaphorical ocean until I am at the beach.
 
So I leave you with this exciting news...I had a blueberry my first without a reaction in 6 years! I was explaining to my doctor how this weight gain I felt like the girl from Willy Wonka (a movie I despise) that blows up like a blueberry...and then I laughed and said oh by the way I actually ate a blueberry pancake this week with only a slight reaction; oh the irony. That side bar had us both laughing at the absurdity of it all. You have to laugh, even thou when I got in the car I sobbed to my mom that I had gained more weight. That's what you do with anything in life, I am not alone you laugh until you cry and you do it all over again. And then somewhere and somehow no matter what you find a way to choose joy even if it is a moment. Moments are really everything.

So to each and every one of you that have supported me in this journey thank you. Thank you doesn't cover the love and understanding this platform gave me. There will be a new blog with a new name and some tweaks or divergence from this illness. I will get over the 20lbs one way or another - I will find the grace and the gratefulness that I can afford new clothes. I will remember that this illness started with me rapidly losing 30lbs and diagnosed with medical anorexia and I will find a way to re frame this narrative and have a little faith these pounds are temporary and perhaps allowing me a little something to hold on to as I have been able to sustain more activity. And if that fails I will need bigger jewelry!

This is post 300. It seemed a fitting way to end. When I find my new way I will post it here and I hope everyone comes with me. I could keep typing away because I'm a bit scared to say goodbye.  Then out of nowhere, the words of Mr. Rogers sneak into my head, it's just "goodbye for now." 

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Back to the floor...that I love...Sophie Chronicles Part 2

The first time I returned to Phoenix on November 11th, Christine, my long term helper had spruced up my condo.  Nothing dramatic just a little six year face lift.  Most were little surprises except the two new chandeliers.  One for my dining room and one for my closet.  It was such a treat to return to these fresh updates.  She had purchased new rugs for my bedroom, and I actually had matching pillowcases for my duvet; "matching" really isn't normally my thing.  She got new bath mats and some new towels.  The chaise on the back porch that was past its prime was gone with a fresh replacement.  However, the most exciting thing she did was fancy up my closet.  I love my closet in Phoenix; even though it wasn't anything besides a basic walk in closet with a mini refrigerator and an ugly light fixture.  Christine's husband had put together (the a bit over the top for the space chandelier) so that wasn't a surprise except perhaps the scale of it...but what was a surprise were the lucite tables one that held the printer the other a mirrored jewelry box.  A mirror now hung above that table.  But the icing on the cake was the blue velvet tufted stool.  I was in love.  Much deeper in love than before.  I had an odd serenity in this closet and not often but every now and then when I was here alone and not doing well I would sit on the floor.  I just found it very comforting - quiet and Phoenix is so bright it was nice to be in a room without windows it felt safe.

Safe

The first week after Sophie passed I got into a routine to clean out one drawer or cabinet.  A really difficult aspect of this illness is the inability to be in motion; when all you want to be is moving.  So this was a fulfilling compromise that kept my mind and body moving without much effort.  So in the evenings when it was quiet I would find a cabinet, sit on the floor and sift through items. 

One afternoon Heather who helps me in WI was over and I felt good enough to do something but not good enough to get in the car and go somewhere and I said well we could do a few drawers.  The two of us sat on my living room floor and began going through a drawer in the cabinet under the tv.  A few minutes into random cords and tv manuals Heather looked at me and said, "I don't think I've sat on the floor since a child - this is oddly calming."  I smiled and said it is isn't it.  I started to talk/sing "back to the floor, that I love...to the gypsy that I was.."

I tried not to cry, as I told her that was the song that I had playing when Sophie passed.  Most of the day was silent or I had Betty Who's I Love You Always Forever on repeat for awhile.  Then I switched to Gypsy.  Then I had turned everything off but put a Fleetwood Mac concert on the tv in the background often on mute.  When Dr. Yehle arrived it had been quiet and I panicked a bit realizing I wanted to hear Gypsy.  Sophie was nestled on my lap and I was trying to get it on my phone, but as luck would have it Amazon music doesn't have Gypsy unless you have the upgrade...if you were wondering.  And I was concerned that if it was on Youtube on my phone what song would come next.  If you are also wondering, no my phone doesn't have my music because my computer and phone won't "talk to each other", thanks Apple.  So this technology frustration was amping up my anxiety.  These are the things I focused on when I didn't want to focus on what was right in front of me; or perhaps the exact opposite I wanted all of my attention on what was happening but I wanted it a certain way.  So I asked my mom to come back into my room and grab my computer where my sweaty fingers wouldn't move the mouse very well.  At one point I looked at Dr. Yehle and said oh you are waiting for me and he softly said, "there is no hurry" in that calm tender voice when you feel so cared for that it breaks your heart.

I finally found it, "who faces freedom with a little bit of fear.  I have no fear I have only love." There were never truer words... I had only love.  I was trying to be back to my own "velvet underground, to a room with some lace and paper flowers..." I was transported back to my corner apartment with the slanted floor, the walk in closet in the living room, the two doors to enter and the lamp covered with a scarf.   The last place I had lived in Milwaukee prior to moving to Phoenix - when the entire world felt like it was wide open to me...to this odd little Gypsy.  But right now "it all came down to you." And much of the last twenty years passed in front of me before I ever met this sweet little soul to this moment when I couldn't imagine my life without her.  How was I to know  the storm that was brewing in front of me fifteen years ago and that she would be my north?  "She is dancing away from me now.  She was a wish. She was just a wish."  She was my wish I never knew I had made.

My Wish Granted

Sunday evening, November 18th,  the night before we left back from Phoenix to Milwaukee I had had my first drink in a really really long time.  I had one tablespoon of gin with tonic.  I felt really blessed I didn't have any negative reaction to the drink that was a tonic for my frayed nerves.  So that night I fell asleep pretty hard to wake up sometime around three in the morning and I could feel Sophie wasn't in the bed.  I groggily got up and quietly called her name. I turned to look in the bathroom and then turned the opposite direction and there she was sitting on the floor that I love under that blue velvet stool.  I bent down and slowly scooped her into my arms which she curled into and carried her back to bed - and I knew.  Sophie never went into that closet.  She no longer jumped down off my bed.  These were clear signs.  I got back into bed and cradled her in my arms while she slept and I cried.  The next day Sophie and I would be joining my parents back to Wisconsin, home, I just hadn't known it then.

I'm back again in Phoenix, have been since Sunday.  My mom left this morning and despite having people in the house with me today I felt a little lost.  Sophie was my noise even in silence.  So while my helpers were busy downstairs I went into my closet and instead of sitting on the floor I just sat on the little blue velvet stool; grateful a few weeks ago she came here to seek solace.  Now I sit here as the one that remains.  Motionless, a bit numb, staring back at the floor that I love.

The Sophie Chronicles...part 1

Crusin to the airport...smiling

My heart is big enough for this pain.

I have spent more time away from Sophie in the past 6 days than I have in the previous 15 years.  And the most ever days in a row....which before November 20, 2018 had been one.  There may have been one other day I am forgetting, and don't want to be overly dramatic so I am adding an extra for the sake of false memory.  I know the one night, I was in Kohler WI.  I know everything about that one night because my x and I were on the verge of breaking up and my best friend had asked if we could watch their children that evening because she was headed to Madison for a funeral.  My X and I got in a huge fight because I did not think golfing in Kohler WI was going to solve our ills and my friend had never asked anything of this importance of me.  My X had put his foot down her or him.  For years and years I harbored anger at myself for choosing such a ridiculous ultimatum...and Kohler didn't accept dogs.  We never went anywhere that didn't except dogs.  So that day I had disappointed myself twice.  And I am telling you right now I would do anything to get that one night back.  Five thousand four hundred and seventy five days ....would never be enough.  There are never enough days for those we love...we will always want one more.

The calendar that hangs on my wall, November's photograph I didn't like the second it had arrived in the mail...and I often flipped it to December in my room.  It came out darker than the actual photo and felt quite ominous, apparently because it was.  And then there is December...with two of my favorite pictures of Sophie and the message to be brave.

December 2018

 A little over a week ago I wrote a tiny bit about giving Sophie a bath...and how docile she sat.  There were a few things I couldn't say - the most important being a little voice told me this would be the last time I bathed her.  Since I got ill I have had to farm off many of the tasks of caring for Sophie, like taking her to the vet, or making her food.  But a task I rarely delegated was giving her a bath, I had such joy being able to take care of her like that, and she hated bathes so I would always do that myself.  Or micromanage the person who was for me.  One of the hardest things about having a body that doesn't cooperate is not being able to show up.  You don't realize how much of your self worth is tied to what you do.  You do your best to compensate and find value and self worth towards others in many other ways, but being able to depend upon you to show up has been taken out of the equation.  Now many people will tell you I still show up....I will answer any call at any time, I will listen and I will try every coping method to make it to something.  But that nagging feeling that you can't be there in the same way you were takes a toll on your psyche.

That was one of my great fears when I began delegating tasks for Sophie to others, what if her affections change.  In truth the exact opposite happened it was as if she dug in further to my side.  The last six months have been physically very taxing because she no longer cared for others to take care of her - she only wanted me...and this was a hurdle I was willing to jump.  It was mainly the nighttime she changed her eating habits and after all the helpers left is when she decided to eat.  Now my little sweetheart had IBS and through the years we have done a ton of homemade diets.  Lets just say my hands after this past six months may still smell like Gerber baby food that I often would hand feed her as she sat patiently and I sat across her.  At first this was absolutely exhausting, but I then learned how to pace.  First  I would turn off my phone or the tv and all my attention went to her.  Instead of it being a burden it became this gift.  It reminded me of helping my grandmother after her stroke.  So between the hours of 9pm and 11pm most nights you would find the two of us sitting on the floor as I whipped up batches of rice cereal, Gerber ham baby food ( by the way who in the hell feeds that crap to babies, no offense if someone reading this did - not judging but man it doesn't smell very pleasant) and deli ham or chicken and scoop it into my hands as she ate.  Many nights I would talk to her and joke well its just you and me kid.  There were many nights I would tell myself drink this in - this bonding this connection because these are the moments that one day you will ache for...

Just you and me kid

Moments are easily lost in the shuffle of a busy life.  But this illness; and I'm not saying this because I am some zen master, but it forces you to savor moments.  Your life becomes segmented into these tiny moments - and if you don't learn how to be grateful for them this illness will swallow you whole.  So I would tell myself look you are feeding her this is a huge accomplishment and damn is she cute. 

So Saturday night, I don't know what possessed me to get up and go downstairs and give her that bath - I didn't think I just did. Unlike previous bathes when she was done she didn't run like crazy in circles and ditch me like we were playing tag, she calmly stayed wrapped in her towel as I held her and dried her off.

I have a very long post that maybe I will finish because I am a curious person and I like details so I just assume others do too.  That post is much more detailed from Saturday to Tuesday - but maybe its better as a journal entry.  However, I needed to put something out in the cyber world because I'm not sleeping very well and every night since last Tuesday as I'm trying to get to bed I think how will I write this post, do I start at the beginning when I first met her in McDonald's parking lot in Flagstaff or do I start at documenting the end...or discuss what this new beginning is like without my constant companion and a chronic illness.  Or do I write to help others that have gone or will go through this moment and say if I can do it - you can too.  It is all a bit jumbled right now and perhaps that is the best way to go...this is a blog for heaven's sake not Hemingway.  Just because she was perfect this blog doesn't have to be.

Butterfly Beach

What I can say right now is that I am simultaneously grateful and gutted.  That in the end my greatest fear was I wouldn't do right by her and be by her side at the end and I was.  That in the end she took care of me as she always has by rapidly declining on Saturday and Sunday evening so that I took the flight home that my parents were already scheduled on Monday evening.  That she rallied and took in one more joyful trip thru the airport where she is everyone's emotional support dog for those moments of oohs and ahhs.  That Tuesday was one of the most beautiful days filled with love and peace that I couldn't wrap my head around she was gone. That my friends and family supported us in ways that was overwhelming in their care. 

In those final days I did something that with this illness I always feared I could not - I showed up.  It was just me and her - I did not delegate - I was strong for her as she has been for me.  That I had a plan with my vet and he was amazing so we were home, in my bed with her head on my lap as we have been for so many years.  In those final moments it was just you and me kid...we did it.  I am so very proud of us...I will miss you forever.

March 28, 2013 - November 20, 2018

My heart is big enough for this pain.

How to Be Well

Sunday afternoon I was gathering the last few things to pack on my way back to Phoenix.  It had snowed the day before; I felt this was a fitting sign it was time to go.  After this early snowfall it is hard for people to understand that the pit in my stomach was as big as the Grand Canyon and my resolve not to get on the plane was growing deeper by the moment.  I started some nervous rituals such as looking at what jewelry I should pack and the gloom and doom if something happens all my jewelry goes down with me...thus none for my nieces.  I then chastise myself this is absolutely ridiculous as I put my grandma's engagement ring in and out and in and out and back out again of the case.  Then I thought I will put it on my finger and that will answer my neurosis - it didn't fit.  So of course it was coming with me.  The sliver of a gold band was not.  Then my attention turned to my slightly swollen fingers that the aforementioned ring didn't fit and the muffin that has arrived around my waist...and vanity blissfully helped my resolve to get on the 5pm flight.  My doctors are there, the weather will make it easier to walk outside, perhaps I can fit more comfortably into my jeans.

Then I just sat.  I sat in my bed and looked out onto the snow and I sobbed.  And I sobbed and I sobbed.  And then I grabbed my calendar all swollen eyes and fingers to pack and I turned the page..as if a year ago I knew I would need a sign as it turned to December; be brave and I thought of the badge a friend had sent to me that hangs in my bathroom "I am brave."  I can do this again, I can do it because it is the best chance of next summer being more...living more.  I reminded myself that feeling brave and being brave are two very different things.  It may not sound challenging to head to sunny AZ, but it is so much more than a flight.  It is a continuation of a fight; one every year feels harder to win.

I am tired of doing this trip -this trip means this illness is still in the driver's seat; and I'm so so tired of being a passenger.   Yet I'm so grateful that my body doesn't have to push through a winter.  Every six months I go through the same pro and con list and find the list where I am out ways the list where I am headed.  There is more to write on this but for the moment I will leave it at that.  I had pulled it together pretty well; knowing no matter the little voice inside my head it was a test not a sign and I would be traveling with my parents and Sophie on the 5pm flight from Milwaukee to Phoenix.  Period end of story.  And then my niece walked in - "no one told me you are leaving today...no one tells me anything" For the love of God stab me through the heart twist and turn it and then hit me over the head.  Luckily resolve was set and I was able to comfort her rather than indulge myself.

She asked ten year old questions..."what are you doing for Thanksgiving"...oh honey nothing but that's no big deal I can't eat most of the good food anyways.  "Why can't you see a doctor here"...well soon maybe I can there is more information but these are the doctors that have helped me the most and the weather is hard on me....I said I was so sorry I thought she had understood last night that I was leaving...and then realized the suitcases were in the guest room and maybe leaving to her just meant she was heading home.  To be frank I was a bit surprised at her nonchalance attitude and even joked she was getting so grown up it was no big deal I was heading out.  A good reminder of what we say and others hear are often not the same thing.  I did the only thing I could I just held her tight, and tears silently went down my face and reminded her she would be too busy to even miss me.  This is not a vacation...this is hard.  It is hard to leave and it is hard to stay.

So here I am.  I have arrived.  My doctor has a new machine that is similar to the UV blood one that I have done before but more powerful.  That is the blood is removed and taken to the machine and honestly I don't know exactly what the fuck happens but its been helping her other patients that are living in limbo walking the tight rope and she is very hopeful it will push me to the other side.  The good news for me is that I am only going to her office twice a month so I do feel a bit like a snowbird on vacation.  So I am scheduling "outings" in as I would a doctor appointment and seeing what can be accomplished.

I have learned over the past few years of being relatively stable in this instability that pacing is my number one best treatment option.  Which is a really hard concept for those that are well to understand and very difficult to do without constantly questioning yourself could I do more - should I have done less.  I am trying to look at the next 6 months as a sabbatical - being isolated from so many friends and family there is a bit where I can breathe again.  I don't feel like I am constantly disappointing people or watching everyone live these full lives that mine use to parallel.  Being secluded in Phoenix often is less lonely or a different kind of lonely than being back home.

I gave Sophie a bath tonight.  It was a wonderful feeling that I was able to take care of her in that way.  She normally isn't a huge fan, but she was quite docile I hope because her skin is a bit sore and it felt good.  However the reality is that she is more fragile.  Oh don't get me wrong she is feisty - ask anyone besides me that dares to try and pick her up.  Our time is limited that is not in question - and I can only hope that its some mystical sign that she will leave me when I am well.  It's fanciful thinking but one I've thought of a lot; this past summer I have needed to care for the ever present companion.  She is tired; and I only too well can empathize.  Love.  I had intended this post to be completely different than what came to be...til next time. xo xo

My favorite book that helped me cope with this crazy illness is Toni Bernhard's How to Be Sick.  I am just praying that soon I will re learn how to be well.  How to Be Sick 2nd Edition

xo xo