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4

Aug

Emotional healing through those who understand

Posted by steph  Published in Featured, inspirational

Today my friend over at Autoimmune Life forwarded an article to me, and I found it so awesome, that I wanted to share it here with you.

From the Chronic Snarkopolist, who posts on the website, Dear Thyroid™, I present the fabulous article:

ME TOO! When I’m Understood I’m Healed
Post Published: 04 August 2010
Author: Melissa Travis

Tonight I spoke to a chronically ill patient I have become friends with over the last few weeks. Our public conversations are always silly and funny. But in private – unlike with others we are closer more confidential. She has recently gotten out of the hospital after an extended stay. Whilst she was in there she goofed around online and had fun keeping up good moods and larking around. I get it! I GET IT!

I use my humor too!

Meanwhile – tonight, emotionally exhausted from packing and taking care of my animals and saying goodbye to the city I love (and every friend I love- and even a few enemies I’ll miss) I told her things I do not tell other people. And she confided a bit in me too. How I needed her words.

“I feel like an attention whore.” “No one gets it, none of my friends.” “It is such a mind fuck.” “I feel so guilty and so angry that so many people love me and take care of me and I can’t seem to stay healthy enough for anyone. And even if I stay healthy I can’t seem to keep my GRATITUDE good enough for them to show them how THANKFUL I am for all they do to me.”

On and on our conversation went. I cannot tell where my words stopped and hers began. I suddenly felt HEALED tonight. Healed of my rage. I felt healed of my anger at myself for not being STRONG enough not to NEED OTHER PEOPLE. I felt healed at being “an attention whore.” I felt healed that I cannot single handedly GET RID OF ALL THESE DISEASES. I felt healed that I need help. I felt healed that I sometimes want love and will sometimes NOT FIND IT – even when I deserve it.

I realize that IF SHE FEELS IT TOO- then I am not alone. And if I feel it then so must YOU. We are all in this together.

I have been holding this in for quite a while – playing perfect patient. Because I am quite a good patient. I can joke with all the staff. I can say goodbye to all my doctors and shed tears at leaving my beloved therapist. I can adore my surgeon and yet see how easily McHotterson only gives a fuck about me if there is something to cut on. AND MAYBE- just maybe THAT IS HIS PROBLEM AND NOT MINE. Once I am not his patient then I am NOTHING anymore. Sometimes people who matter or care about someone – need that feeling extended just a little longer. (It is a flaw in the system in academia too – one I have single-handedly STOPPED perpetuating. FUCK PATRIARCHY. Down with “because this is the way we’ve always done it!” )

Maybe doctors and patients SHOULD be more to each other if there is to be TRUE HEALING. And maybe wanting that – wanting the words “I love you” to be HEALING WORDS – AND NOT JUST for romance or throwaway – maybe that’s something I SHOULD feel proud of and not silly about. (No- I never told any doctors that I promise. But I have had a therapist say it TO ME – and it was the MOST RESTORATIVE AND HEALING BALM ON MY SOUL.)

I WISH THE WORLD COULD SAY IT AND MEAN IT AND HEAR IT. I feel so sad for our world right now. I feel our world is broken hearted and the weight of it is hurting all of us, making us sicker than we NEED to be.

And that is hard to deal with. It is CONFUSING for patients who are long term sick – for people like ME who have nothing but illness – long stretches of chronic illness – who form RELATIONSHIPS with doctors but then really- their doctors don’t truly LOVE US. It is confusing too – to have FAMILY who love us – but will NEVER TRULY UNDERSTAND US. And friends who we pick based on our illnesses… sick friends, healthy friends, and our “grey area friends” (the friends we don’t tell… the don’t ask don’t tell friends).

And suddenly tonight – I felt healed – even just a bit. Because someone else heard my story and she too HAD LIVED IT. And I felt humbled and grateful and happy about it.

I decided to share that with you. I don’t expect you to understand all of it- but I do know that we all struggle. We just do. We all heal through our stories And right now I am moving home because of finances and sickness that won’t fucking go away. And I want it to be temporary- but it keeps slamming and slamming into me. And I can stiff upper all I want and joke all I want – but PRETENDING that I’m strong is getting the best of me.

Tonight- I healed because I admitted to someone that I was weak. And she admitted it too. And together we shared our fears and our pain. And the funny thing is – NO ONE WOULD HAVE EVER KNOWN IT ABOUT HER.

So I’m sharing my weakness with you, my stories with you, my soul with you – on the chance that you too might feel healed by it. All of us have a time when it is just too much. All of us feel fake, feel exhausted, feel like it is TOO MUCH. We feel like our friends will find us “attention whores” if we have even ONE MORE DOCTOR VISIT or one more hospitalization or ONE MORE POSITIVE CANCER TEST.

And I’m telling you this – let’s collectively heal each other. I needed it tonight. I’ve got your back.

So tell me what heals you? What balms your soul? Do you need to be told “I love you?” Do you want REAL relationships with people? Am I sharting up the wrong tree? Tonight feels so healing to me I felt like sharing. And in sharing I hope you’re picking up what I’m putting down.

I’ll be seeing you next week! Same time same place! Kisses!

(You can click here to learn more about Dear Thyroid™, a thyroid diseases and cancers support community and literary brand, written by and for thyroid patients).

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3

Apr

We are not “disabled”- we are warriors.

Posted by steph  Published in inspirational

Today my blog friend Jeanne posted a video to her site. I implore you to watch this video, because the person speaking in the video – Aimee Mullins – elaborates in the best way what I have been thinking for the last few years since my surgical diagnosis – “…there’s a difference between the medical condition and what someone might do with it.”

Aimee Mullins said that there’s been a shift in her thinking over time “in that if you’d asked me at fifteen years old if I would have traded prosthetics for flesh and bone legs, I wouldn’t have hesitated for a second. I aspired to that kind of normalcy back then. But if you ask me today, I’m not so sure….and it’s because of the experiences I’ve had with them, not in spite of the experiences I’ve had with them.”

I have been feeling the same way about how I view life and look at others – had I not had to live with the disabling pain of endometriosis, I might not be the empathic human I am today, who is able to see and understand the silent suffering in others, and who can as a result reach out to people. I firmly believe that who I am today – for the better I might add – is because of the experiences I’ve had with my painful illness, not in spite of the experiences I’ve had with my painful illness.

The year I had my surgical diagnosis, I began reading hundreds and hundreds of stories of other women who go through what I go through on varying levels. I then launched this website in order to educate myself and others – to learn more coping skills, to find out what research is being done out there to try to find a cure for this debilitating illness. I began making friends with other women who suffer as I do.

In that time, I’ve come to refer to us as warrior women. We are fighting the good fight towards achieving global awareness and understanding of our condition, as well as fighting for receiving humane treatment. We can do this. We have to do this – not just for us, but for our sisters, our cousins, our nieces, our daughters.

Aimee Mullins is also a warrior woman. Please watch and listen to her lecture below, as what she says encapsulates my own thoughts, and she does a fantastic job of getting the point across.

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Don't Have Endo? Please Read!

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Important Pages

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Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

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  • MyMonthlyCycles.com - free
    personalized tools to track,
    monitor, and manage your
    monthly menstrual cycles!

Endo Products


  • HagRag.com - cloth
    menstrual pads

  • Lola's Loft - cloth
    menstrual pads

  • Naturally Hip - cloth
    menstrual pads

  • EndoFEMM - Microwavable
    corn-filled cloth heating pads
    (mention you saw them here
    and get 10% off your order!)

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Recent Posts

  • Yale researchers find gene mutation on chromosome 12
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  • Interesting read on treatments doctors do not seek for themselves
  • Prescription Painkiller Addiction: 7 Myths
  • Red and processed meat increase risk of bowel cancer
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