Tuesday, November 10, 2020


Note : this post was written almost  2 years ago; I left it in draft bc it needed editing but when I went to write today I saw the title and felt we all may be dealing with a bit of an identity crisis. It’s from the vault of imperfection 💝

When I got on the plane to head back to Phoenix this past December after Sophie passed I was acutely aware of an identity shift. I was no longer the girl walking through the airport with my adorable little white fluffy side kick. It was an odd feeling walking anonymously through the terminal and through security without the omnipresent smiles, or someone stopping to tell me how they just had to come say hello because they missed their dog that wasn't traveling with them. It made a stressful trip less stressful and Sophie adored the airport. She pranced through well aware of the admirers and not at least of all impressed or interested in their attention.

Since her passing I feel I have once again lost more of my identity. I've (besides the keyboard issue) had a difficult time writing. I had started this blog with her and always had this bizarre faith that when she left me I would be well. My grandma was given this plant arrangement when she got a devastating cancer diagnosis. Her surgeon, a friend of ours, had come out with tears in his eyes and her oncologist vowed he would stay with her until she passed. Well nothing went as planned for once in the most astonishing way her oncologist ended up finally retiring and it was the best joke as the years had gone by - can Dr. Phil ever retire? Meanwhile that little plant in the plant basket had grown to epic proportions and ended up being moved into the front lobby of my grandma's condo building when it had outgrown her ceiling. Every time I went to get buzzed in I would look at that 10 foot plus plant as a reminder of how far we had come. Then it happened that plant began to wilt, the leaves dropped and couldn't be nursed back to health, at the same time my grandma got re-diagnosed with bone cancer. Which I will say she again beat at remarkable odds.

So there are these two trees that merge towards each other that are the framework for my gorgeous sunsets here in Phoenix. When I returned home one night I noticed that the tree on the right looked a bit unhealthy. I think they are Torry Pines, no matter, I took a picture as it took me back to the tree in my grandma's lobby. I've been in this condo for six years. We bought it specifically for my health and treatments. This place, this move, this was my hope. And now I returned without Sophie and staring at a wilting pine. A few mornings later I was awoken early to chain saw and by the time I had gotten to my balcony the tree was nearly gone. So now the one tree leans toward the right just leaning alone. That's exactly how I felt.

Everyone this year (meaning my time back in Phoenix) has noticed myself included a significant increase in my day to day activities that must be directly related to my doctors new aka very old Knott machine (if you are interested this article mentions Dr. Knott) but the last four months I feel like I keep losing more of myself. Illness, chronic illness personally speaking works really hard at stealing your identity. You do your best to reclaim it or reinvent it but it is a daily decision to carve out who you are. It is a never ending balance of acceptance and keep pushing for answers. Both extremes dangerous places to be one may keep you stuck and the other may throw you into a deep depression of what use to be's.

Just barely can see her little head MY TREATMENT DR. KNOTT

If I count what I have lost, the list is endless. Our identity is tied to what we do, I do very little. I was someone that loved the movies, loved going out to eat, loved being around lots of people (not crowds) I loved golfing, running (my best ever 8 miles...never said I was good at it) loved being in motion. I loved traveling and getting my hair colored and going for massages. I loved melding into someone else's home staying somewhere else for a few days. I loved living near Lake Michigan and early morning walks. I loved going to concerts and sporting events - basketball - Lambeau really is a pain in the ass drive. I loved helping people, cleaning up after Holiday dinners, helping set the table, I never liked cooking - please. But I was a decent sous chef. I loved reading and studying and going to school. I loved spontaneity. I loved being good in a crisis or taking charge like caring for my grandma once she got into the nursing home. I loved my independence.. oh the list is never ending...

So here we are. One more thing. In the last six months I have gained almost 20 lbs. and it has become the straw that has broken my spirit. I have always been thin. Too thin often, scary thin a few times. When I first started becoming unwell I was struggling to stay above 100lbs. I mean really struggling, my boyfriend at the time gained 2 pants sizes trying to keep up with my eating habits. There is more research now that thyroid is perhaps despite normal ranges not activated in people with this illness. And also, thyroid tends to perhaps due to its' "Master Gland" knick name go out of whack with this illness. I had every hyper thyroid symptom when I first was sick, if you asked a first year med student what I had they would all say hyperthyroid...but my labs weren't as off as they would suspect. They were right at the edge of within normal range - god damn fucking idiots. I was medically diagnosed at Mayo w "medical anorexia" muscle wasting. Well as fast as those 20 plus pounds melted off my 10 plus years ago a new 20 has magically emerged.

I hadn't been the best advocate for myself the last few months as I felt this weight creeping on despite doing more and eating less. My doctor thought it was infection weight, water weight, swelling in the intestines. But I also didn't really demand it be better looked at since we are doing the Dr. Knott treatment and I am not there as often. But today it sunk in as I had gained 4 lbs since my last visit three weeks ago - and she felt bad. Not bad, but she was a bit taken off guard herself. Which honestly I don't blame her - a complex illness with no road map - I have "cheated" on her with other doctors over the years again and again hoping someone has a better solution. But I have never left her. All the others they try these treatments that are for healthy people or think there are holes in her treatment and you know what I keep going back - well I never leave - but I need that for my sanity. To know I've exhausted all avenues. Even though I know she's the best of the best for me... so she had a lapse.

I got in the car, after my treatment and my parents are here so my mom drove with me, and I just sobbed. I said how much more can be taken away? How many more things can I lose before it becomes too much. I got home and Chrissy was here and my parents went to dinner. I over did it when I got home and soon felt pretty fluish. So after eating something I lied in bed like a corpse and didn't move I woke up what I thought should be morning and it wasn't even 9 o'clock yet.

My best friend called me on her way home from work and I got a little second wind thankfully. My parents have gone to bed. I got up and brushed my teeth and did a few sit ups knowing it wasn't going to make a dent - and tried to tell myself to just let it go. Perhaps this is full circle you started this illness with weight loss maybe this is the end. Maybe this little extra weight has given you some stability to do a bit more. And then I told myself to stop bitching. And then I cried again. But it all came together - I'm not really crying about the weight. Oh sure, I'm vain as hell which is a real motivating factor when ill. You will not see me not get dressed no matter what time I feel good enough to - jeans are my life saver they say I haven't given up. I looked inward and said no you are crying because once again this body is betraying you and you feel you have no control.

I'm guessing this is a confluence of age and this illness and thyroid...but what is at the depths of this anger and frustration is fear. What if I blow up like the girl from Willy Wonka? Like a big purple blueberry? I have literally eaten nearly the exact same diet for 4 years since my food allergies got so bad. I don't really ever have an appetite I get head hungry not stomach hungry. I have so little ability to change what I eat, post exertional malaise is the Hallmark of this illness. So it is fear. It is fear of losing yet another thing I didn't even see coming. It is a closet full of carefully selected wrap dresses and my 4 pair of blue jeans that I not only feel comfortable in, they bring me stability, normalcy. I think I wrote a post called Foerver in Blue Jeans. It is the "fake it til you make it" that is harder to do when I'm near tears trying to get ready. It's staring in the mirror wondering what the hell?

This last four months I have felt my identity chipped away even further. I will find a way through this but a re invention is in order. I am ending this blog. This blog was started with Sophie and now ends with her. I began it in 2008 and a lot has changed and unfortunately a lot hasn't. But my need to explain myself, well for the most part, I'm tired of that.

If a bit has changed within me there has been a tidal wave of change in the community. When I began this I thought I was alone. Now I know that is the furthest thing from the truth. There was little hope - and now there are many reasons to hope or perhaps have faith. The name is no longer something I choose to identify with as it comes with the belief system I had when I began writing this - that I was the problem. That I hadn't tried hard enough. That I did this to myself. The guilt, the shame, the confusion.But that's the thing - I am one of more than a Million Missing. There have been 2 amazing documentaries. The Global ME Facebook page has people from around the world that echo every word I say. I have begrudgingly accepted the digital world because it gave this community it's power back from the depths of bedrooms across this globe.

I started this blog thinking I would end it and I would be well when Sophie left me...in the words of Joan Didion - Magical Thinking. But maybe not. Maybe there is a little magic waiting for us and I will come back but I have tried on this space - and this space well it's time to say good bye to it also.

I've got a few things in mind. I am going to slowly start a consulting business for people recently diagnosed or trying to find their way through a maze of illnesses that aren't easily treated. A sounding board and resource to help explain medicines and do my best to help others find a road map and advocate the best I can. I also will start a new blog and give that info on this space when I start again.

I am bare to the bones now and lost in who I am in this new middle ground of this illness. Not nearly as sick as I was thank god for my doctor but not close to "normal" life. I miss my little buddy and I feel when I lost her my words have been difficult to articulate. I am really really a blessed human being with a shitty ass genetic hand that I will figure out how to come out the other side with as much grace and grit as I can muster.

I am so grateful for every single person who has read this blog who has reached out to me and I hope I have brought understanding to an illness we are all still trying to understand. What I know for sure is I no longer identify nor will be labeled with Chronic Fatigue Syndrome. Words matter, names matter, and this name has done the greatest disservice to myself and a million plus other people. I am not tired. Period end of story. Tired means taking a nap and feeling refreshed. Tired is running further than you did the day before and needing a good epsom salt bath. Tired is working a 60 hour work week raising a family and at the end of the week collapsing into the sofa with carry out pizza and a movie all to do it again next week. Yes I am fatigued and chronically so - but I will not continue the harm that dismissive name has done to so many people.

Tripod photo on Sophie's birthday March 28, 2018

 Thank you my beloved companion. I will find my voice again soon. I promise.

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