Friday, March 15, 2019

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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