First Week of February 2016 – And in Memory of Jim Ingle

 

My block helped nearly 2 weeks. I had the Lumbar Sympathetic Nerve block on January 28, 2016.  I had a reduction from a really hard 8 going in for the procedure to a 4 until a couple of days ago when it started creeping back up. L3 and L4 this time instead of L2 and L4. I was so grateful for this. That’s 40-50 percent of reduced symptoms. When I left to receive that amazing award my medication had been delayed yet again. I was a week without already. My block only covered my right lower extremity so 4 means only that which was blocked. I’m still working on a post to share the Bakken Invitation Award experience. I almost left it all behind and I almost didn’t make it through once there, but I did, and I did. The block eased the flare I left in and came home with, allowed extra midnight snacks for the man, dinners, cleaning, sharing, a little catching up. That really is everything it could have been. I don’t count what I didn’t get from the block, I consider each symptom I get relief from. That allows me an over all number, fairly. I tend to be conservative with the pain scale. The time it lasted wasn’t what my insurance wants to approve it again, but it lasted long enough that I could catch my breath again. Since many don’t want anyone on pain reliever, options are minimal for most of us. Not every option is available in every area and not every option is covered by insurance, therefor, we’re stuck in a trap. I’ve already fallen twice in the last couple of weeks. Staying up on my legs is becoming a another risk. I take so much Ibuprofen for inflammation no wonder my liver is a mess and I need to water my kidney’s in excess to keep them flushed due to diminished function. I didn’t get back on my medication until the 10th day and the night after returning.  Had I not been in a flare, or medication delayed, my block may have helped better. The body trying to recover itself from a sudden change and in a sense shock. The inflammation and swelling was horrible. I had my mouth repaired soon after my block. Still a process there. I didn’t have the grafting done even though the bone damage in my face is an issue, too. I fell asleep 4 times today, just worn. I’m charging my SCS right now, so that I can give me a nice goose me up and numb me down.

Movie time.

February 4, 2016

I fell asleep before posting last evening and woke to learn of a heartbreaking loss.

It is with great sadness that Mr. Jim Ingle, Barby Ingle ‘s dad passed away this morning. Without Mr. Ingle, the International Pain Foundation (Power of Pain) wouldn’t exist. He lost his battle waiting on a kidney transplant and other life saving procedures. He fought for himself to the last second, reaching his son’s home in his own vehicle, even after crashing it, where he passed away with his son and first responders before ever reaching the hospital. Mr. Ingle didn’t have a phone to call for his own help, the family was trying to have it replaced promptly which also never happened in time.

Photo is Mr. Ingle presenting the Melanie McDowell Award to Dale Lehn 2008 recipient.

The Power of Pain Foundation (International Pain Foundation) presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance. http://powerofpain.org/mcdowell-advocacy-award/

My heart breaks for Barby, and her siblings, who also lost their mom last year. I’m so grateful that I’ve been apart of IPF POP long enough to have been on conference calls with the man himself. Godspeed Sir. Thank you for all you’ve given, all you’ve fought for and for starting this organization in honor of his daughter Barby and memory of Melanie.

 

Jim Ingle preseting the 1st Melanie McDowell Award to Dale Lehn 2008 2016-02-04

Mr. Jim Ingle presenting the Melanie McDowell Pain Awareness and Advocacy Award to Dale Lehn, 2008 recipient.

 

I don’t generally solicit donations, but in honor of the man who not only brought “Power of Pain” to my life via his daughter, but ours, he’s worth it.

http://powerofpain.org/donate-ipain/   A gift can be made in his memory and/or honor – Jim Ingle

Thank you!

Advertisements

In Memory of Mary LaBree – An Original RSD Advocate

One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.

 

 

Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938

 

She worked both locally in Massachusetts and Nationally.

 

Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.

 

When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.

 

In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.

 

If you pray, why worry…  If you worry, why pray?  

 

I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.

 

  • October 8

10/8, 4:04pm

Mary LaBree

I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M

  • October 9

10/9, 5:22pm

Twinkle Wood-VanFleet

You’re always in my thoughts and prayers for your health, and your work, Mary. I do hope to meet you in November. xx

  • October 10

10/10, 10:07pm

Mary LaBree

Hi, Yes I’m looking forward to meeting you as well. I leave Oct 23 on. Friday. A lil less then 2 wks.I will call u sometime on the weekend after I arrive, hugs & lots of love.M

  • October 12

10/12, 7:04pm

Mary LaBree

I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.

 

The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.

The last message was in reference to an accidental group IM.

I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.

 

Mary LaBree Melanie McDowell Awareness and Advocacy Award Nomination 2015 Slide property of @powerofpain

Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015

 

I wish she would have received more nominations, but mine was the only one for her.  She was most deserving.

 

We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.

She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.

Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.

 

I’m humbled to have been accepted, acknowledged, taught and even loved by her.

 

Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.

 

She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).

 

I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.

 

You did Mary! You really did! You achieved them all to the last breath.

 

And I thank you!

 

With gratitude, hugs and lots of love,

 

Miss you, won’t forget you,

~T

 

Mary’s Facebook page:    Pro image ML  https://www.facebook.com/messages/mlabree1

 

 

 

Lets not forget the ones who started the path that gave way for us to do what we do.  ~Twinkle V.

 

On behalf of all of us this one’s for you!

 

(Originally written at the end of October and updated today)

 


 

Reference to Mary’s favorite quote shared above. The above is shared the way she said it.

 

“If You Pray Don’t Worry… If You Worry Why Pray” sermon by Levi Wright