Tuesday, January 29, 2019

Experiencing an Endometriosis or Fibromyalgia Flare

Allison Jonergin
Guest Blogger

It’s hard to talk about flares. While they’re unfolding, I’m not carving intricate memories, I’m focused on my next breath. Then suddenly they’re over, though full days have passed. It feels insincere to talk about it when it’s not actually happening.

A sufferer of chronic pain, I don’t have pain-free days. Whereas most days press my limits, during flares I occupy the losing side.

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I remember my Dad urging me, “Now’s not the time to be brave,” while waiting to see the doctor in the emergency room. The pain was not nearly as severe as it had been moments prior. It was still the worst pain I’d experienced in my life, but the throbbing wound couldn’t compare to the impact of the bullet. Except it wasn’t a bullet or a visible flesh wound, but internal bleeding caused by lesions of endometrial tissue swelling in unison with my endometrial lining, located in the uterus, growing to receive a fertilized egg. And, when no such egg arrived, it was time to break away and leave my body as my period. Except these endometrial tissues don’t belong outside of the uterus, and they were growing on organs throughout my pelvis and abdomen. Trapped, the tissues bled until fluxes in my hormone levels instructed them to stop. My options were hormone treatments or surgery. I would need several rounds of both.

The doctor didn’t tell me this that night. Like many women, my endometriosis was going undetected. I waited three years after the onset of my first symptoms to be diagnosed.

I’m fortunate to be a success story. Two years after that emergency room visit, I underwent a total hysterectomy, removing also my fallopian tubes and one ovary. While there is no cure for endometriosis, I’m no longer having surgery after surgery to remove endometriosis lesions. I still experience pelvic pain – thanks mostly to scar tissue – especially when my remaining ovary decides to ovulate.

Fibromyalgia, on the other hand, is an ache that runs deep into my muscles; it clenches my bones and joints in vice grips; it sends supercharged shockwaves down my limbs like a rogue sparking electric wire; it lights entire sheets of skin on fire from within; it furnishes my wrists and ankles with cement blocks, exhausting my physical strength.

This sort of suffering doesn’t build character; it breaks it.

In A Farewell to Arms, Ernest Hemingway said, “The world breaks everyone and afterward many are strong at the broken places.”

Broken is exactly how I feel in the midst of a flare. I don’t have the energy to speak, or even to nod or smile. I’m taking shallow breaths because my rib cage feels too heavy to lift. I can’t hold myself upward, the weight of my muscles, organs and fatty tissue slung over my skeleton like a wet towel. None of my movements feel natural, my shirt rubbing like sandpaper against my skin. I’m dragging myself, with not a single muscle cooperating in carrying the load.

I’m tapped out. This must be what dying feels like, I think. But around me, smiling faces are speaking and asking me questions. They don’t see the light leaving my eyes.

Every word my ears involuntarily hear siphons the last drops of energy from my tank.

Hemingway went on to write, “But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially.”

So in my darkest moments, I remember that I have braved long nights before, and I’ve lived to see the sun rise. To break means I am still alive.

More Blogs by Allison Jonergin:

Friday, January 25, 2019

In Memoriam: Cindy Bryan

Dear Friends,

It is with great sorrow that I must inform you of the passing of a great woman, a fellow colleague and friend who has meant so much to the North Country Center for Independence and to this community. Cindy Bryan was a tireless worker who was absolutely devoted to NCCI and especially to the consumers that she served. Cindy was a giver and she carried the weight of the economic injustice that she saw daily on her shoulders. Cindy was NCCI’s Medicaid Facilitated Enroller for the aged, blind and disabled but she did so much more. She was an incredibly skilled finance person and acted as a mentor for both the Executive Director and Financial Director of the agency. There wasn’t anything she wouldn’t do to help her colleagues. She made people’s lives better. Although we are greatly diminished by her loss, I know that she is encouraging us from the next life to keep on fighting and working for the people that we serve. Let us always remember her as a person who was devoted to making the world a better place. Cindy, thank you for your service, thank you for touching our lives, we will miss you, good bye for now.

To Cindy’s family, we send our deepest sympathies. Thank you so much for sharing her with us. She meant the world to this organization and to the people she helped.

Robert Poulin
Executive Director

Friday, January 18, 2019

Three Links

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared this past week on NCCI's social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

Courtney Cole, Rooted In Rights - January 11, 2019

A critical look at the film itself, the weird social phenomenon, and how both related to peoples’ perception of blindness.
Alison Green, Ask A Manager - January 14, 2019

It’s good to see an advice program that doesn’t specialize in disability getting a disability issue right!

Ace Ratcliff, Eater - January 16, 2019

A fresh take on a familiar topic.

Tuesday, January 15, 2019

Important Notice About SNAP (Food Stamps)

SNAP (Food Stamps) recipients in New York will see an unexpected increased balance on January 20. Please note … this will be an advance payment of your usual February allocation, not an actual increase in benefits.

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Early payment of February’s allocation is happening because of the partial federal government shutdown. SNAP program administrators have managed to secure February’s funding, but it must be distributed early. The important thing for SNAP recipients to remember is that this is not an increase. You are not getting more than you usually get. You are just being paid for February early.

That means that you will need to take extra care to budget your SNAP benefits carefully. Don’t spend it all now, or you won’t have enough left over in February. Your best response to the early payment should be to do nothing different. Only spend what you were normally planning on spending, in January first, then February.

The SNAP program, previously known as Food Stamps, helps 1 in 7 American families afford nutritious food. In New York State it’s 1 in 8 families. The program is especially vital to people with disabilities. in 2015, 1 in 4 SNAP recipients had some kind of disability. In New York, almost half of the families receiving SNAP include someone with a disability.

If you have any questions about this, call your office of Social Services, or NCCI at 518-563-9058.

Friday, January 11, 2019

Action Alert: Act Now to Ensure All Voting Reforms Are Accessible To People With Disabilities!

Action Alert in large white letters on a dark red background

This Action Alert was posted today by the New York Association on Independent Living (NYAIL) ...

The legislature is planning to take up a package of voting reforms on Monday. Among the package of bills is A.780/S.1102, which would implement early voting in New York State. NYAIL strongly supports making it easier to vote by enacting voting reforms like early voting and same day and automatic voter registration, but it is critical that accessibility is prioritized in all of these proposed policies!

As written, the current bill does not ensure full accessibility to voters with disabilities during early voting. It does not require that a ballot marking device be available during early voting. In other states that already have early voting, ballot marking devices have not always been available. It is critical that the state ensure they are available in New York! Other states have not always included BMDs during early voting. This is unacceptable!

Call the Election Law Chairs and the heads of the State Senate and Assembly today and urge them to ensure full accessibility during early voting when they take up A.780/S.1102 on Monday!


  • Senate Majority Leader Andrea Stewart Cousins - 518-455-2585
  • Speaker of the Assembly Carl Heastie - 518-455-3791
  • Assembly Election Law Chair, Charles Lavine - 518-455-5456
  • Senate Election Law Chair, Zellnor Myrie - 518-455-2431


"I strongly support making it easier for everyone to vote by implementing early voting, automatic voter registration and same day voter registration, as long as accessibility for voters with disabilities is prioritized in all voting reforms. A.780/S.1102 does not do this. The bill does not mandate a ballot marking device, which allows people to vote privately and independently, be available during early voting. Whenever and wherever elections are held and in whatever format, the State and localities must make all voting accessible to all voters with disabilities, and having a ballot marking device at all polling locations during early voting is an essential part of full accessibility."

Three Links

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared over the last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

Katrina Kelly, Center for Disability Rights - January 2, 2019

A disabled woman’s story of adopting a child.
Mary Alex Bernard, The Philadelphia Inquirer - August 2, 2018

Adaptation to disability goes in both directions.

Living Big In A Tiny House - January 4, 2019

More of this in home construction please … tiny or not!

Friday, January 4, 2019

Three Links

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared recently on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

Henry J. Aaron, Brooking’s Institution - December 12, 2018

A good overview and update on the Social Security Disability “crisis”. The only thing missing is the possibility that people who actually need and use SSDI might have ideas to improve it.
Allison Jonergin, NCCI Blog - December 28, 2018

Another wonderful guest blog from Allison Jonegrin.

Jessica Gimeno, Fashionably Ill - January 4, 2019

Strong advice on how to treat people with disabilities, and why seemingly innocuous questions can be so upsetting.