A new friend of mine from online calls herself “Pain Warrior’s Code” (or @PainWarriorCode on Twitter). Her bio reads: “A pain warrior who had hit rock bottom, got up & decided to give hope to other pain warriors. I’ll fight beside you.” I remembered those words one day as I was struggling to write this article on ET Frustrations about “support.” Stopping to take a break, I went on her Twitter page, and she’d just posted this tweet: “Anyone ever have those moments when family members say something really inconsiderate regarding your illness? How do you cope?” Seeing that stopped me in my tracks, and I responded, “Oh my goodness, you’re reading my mind!”**

The reason I felt that way was because that little word “support,” and all it conjures up, is very painful and emotional to me. SO much so, that each time I’d start writing this article, my emotions would just overwhelm me, and I couldn’t continue. I was about to write in to Patient Power and suggest that they ask another to address this topic. But as I went for my laptop, I heard the familiar “ping” of an email notification from my phone. Stopping to see what it was, I saw that it was a message from another new online friend, Lina. She was just checking in to see how I was feeling. Reading her message, I again felt a smile cross my face, and my spirits lifted. These two unexpected shows of support were just the boost I needed!

You see, I’d been writing about support experiences I’ve had, or as my husband likes to call them “lack-there-ofs.” I’m sure you know what I’m thinking of. All those times that a family member or friend didn’t understand your illness, didn’t believe you, didn’t offer to help or turned their back on you. Those times when you needed someone, and their lack of support let you down. I’ve had a lot of those, and they are one of the toughest issues I’ve faced with ET. I think it’s because those moments are so unbelievable to me. Never in a million years did I think that some of the people I counted on as closest to me, would let me down when I needed their support the most. The anger, sadness and frustration of that fact is difficult to shake off, even years later—so difficult, that thinking of it literally drains the energy right out of me.

That was the state I was in, reliving those moments for this article—sad, angry, frustrated and so very, very tired. But then, out of the blue, I had the support I was looking for. People I’ve never even met in person had the compassion in their hearts to reach out and offer support. Those little gestures turned my day around, and instead of letting those “lack-there-of” support memories drain me of my happiness, I’m going to take this opportunity to remind myself, and you, that Support can come from a variety of sources! It can be the warm squeeze of your loved one’s hand, a song on the radio, a neighbor bringing up your paper, a response from a fellow illness battler, a good book and a comfy couch, a hug from your daughter, the welcoming purr of your pet, a flitting butterfly dancing in a ray of sun in your yard… And don’t forget that we, too, can be that ray of support for someone else! We may not all be battling the same illness, but we all are battlers, and together we are all stronger.

I encourage you, right now, to leave those bad thoughts behind and focus on the positive that is all around you! I hope this will remind you, like it has me, that we ARE SUPPORTED exactly when we need it, and exactly how we need it, as long as we remember to see it. I’m going to sign off now by leaving you with a list of support sources that I find helpful. I’m also going to take a moment and reach out to offer some support to a few battlers I know, as I sing along to the radio and try to do as my daughter’s hero recommends and just “Shake It Off” :).

-Thinking Good Thoughts,

Elizabeth Gross

 

Support Sources for those battling ET or illness:

https://www.PatientPower.info

www.lls.org

http://www.mayoclinic.com/health/thrombocythemia/DS01087

www.deletebloodcancer.org

www.giftoflife.org

http://www.chemocare.com/bio/hydroxyurea.asp

www.acor.org

www.mpnresearchfoundation.org

www.kriscarr.com

http://www.mpninfo.org

http://www.labtestsonline.org

http://www.aarp.org/health/doctors-hospitals/info-02-2012/understanding-lab-test-results.html

http://www.cleaningforareason.org

http://www.touchedbycancer.org

www.yourbrainafterchemo.com

http://www.vitamincfoundation.com

http://www.mecuperate.co.uk

http://www.lumosity.com

http://www.pajamadaze.com

http://www.rarediseases.org

BOOKS:

An Eagle Named Freedom by Jeff Guidry

Dream Accomplished by Elizabeth Gross

Crazy, Sexy Diet by Kris Carr

You Don’t Look Sick by Joy H. Selak and Steven S. Overman MD

PowerFoods by Stephanie Beling MD

Your Brain After Chemo, by Dan Silverman MD PhD and Idelle Davidson

Essential Haematology 6th Edition Capter 15: The non-leukaemic myeloproliferative neoplasms

ON TWITTER:

@patientpower

@MPN_RF

@IdelleDavidson

@mpdrc

@PainWarriorCode

@LinaMPN

@JennyBarber11

@Lumosity

@patientpowereu

@livingalunglife

@hesaonlineorg

@PajamaDaze

@kalie_ashenden

**(To read Full Tweet between @PainWarriorCode and me @OurTaylorStory please go to: https://twitter.com/PainWarriorCode/status/721067454085087233)