Amanda Reed, center, a Craig-area resident, poses with her children, Caitlin, 11, and Trayton, 9, at Sunset Elementary School, where Trayton goes to school. Reed volunteers at Sunset Elementary and also helps put on an annual holiday store at local elementary schools that allows children to buy affordable gifts for their families.

Photo by Bridget Manley

Amanda Reed, center, a Craig-area resident, poses with her children, Caitlin, 11, and Trayton, 9, at Sunset Elementary School, where Trayton goes to school. Reed volunteers at Sunset Elementary and also helps put on an annual holiday store at local elementary schools that allows children to buy affordable gifts for their families.

Local woman finds solace from rare condition in holiday program for children

Advertisement

photo

Amanda Reed, center, a Craig-area resident, stands with her children, Caitlin, 11, and Trayton, 9, at Sunset Elementary School, where Trayton is a third-grader. Reed was diagnosed with condensing osteitis a few months ago and is hoping a trip to the Mayo Clinic in February will provide answers about the rare condition.

photo

Amanda Reed, center, helps Hailey Collins, a Ridgeview Elementary School first-grader, pick a present for a family member Tuesday at the school. Reed helped bring the holiday gift program to Ridgeview Elementary several years ago and still helps put it on annually.

A smile spread across Amanda Reed’s face Tuesday morning as she packaged her young customer’s gifts.

“Your mom’s going to like that,” Reed said to a Ridgeview Elementary School student as she gently wrapped the child’s purchases.

Reed, 33, is a stay-at-home mom, wife and volunteer at Sunset Elementary School, where her son, Trayton, 9, is a third-grader.

On this day, she’s a volunteer for Penguin Patch, a program at Ridgeview and Sunset elementary schools this year that offers affordable gifts children can buy for their families.

A few minutes earlier, Reed knelt next to Jadence Vasquez, a Ridgeview Elementary first-grader, who was puzzling over a gift for her brother.

“What do you think he’d like?” Reed asked gently as she showed Vasquez foam balls and other items a boy might appreciate.

With her broad smile and bright red Santa Claus hat, Reed seemed far removed from pain and uncertainty.

But, there’s another reality in Reed’s life that has evaded easy diagnosis and surrendered few answers.

‘Constantly there’

The pain started about a year and a half ago — a sharp pain that defied explanation.

It’s like “someone sticking a knife into your bone and twisting it,” Reed said.

She underwent multiple tests and saw several local physicians, but the pain’s source remained a mystery.

Then, a few months ago, the answer came.

Reed learned she has condensing osteitis of the clavicle, a rare disorder that, although benign, can cause excruciating pain.

The American Journal of Roentgenology defines the condition as “marked by bony sclerosis at the sternal end of the clavicle,” according to the publication’s website.

Put in simpler terms, the bone swells up, Reed said, although the pain can fluctuate.

“It’s constantly there,” she said. “When (the pain) is quiet, it’s more of a nuisance.”

There’s no known treatment for the disorder, she said, and physical therapy is out of the question.

“The more you do, the angrier (the pain) gets,” she said.

She hopes to eventually find insight into the disease that physicians and her own inquiries have been unable to provide.

“It’s one of those things — what do you do about it, you know?” her husband Jack Reed said.

Amanda Reed’s research on the Internet uncovered a case in Germany where a woman suffering from the disorder had the bone removed, he said, and the procedure seems to have worked.

“But, I mean, heck, that’s Germany,” he said. “That might as well be Mars, as far as medicine’s concerned, because you’re not going to find anybody in the United States that (does) experimental stuff like that.”

Yet the couple chooses not to dwell on these things.

The condition doesn’t dictate their lives, nor does it diminish their appreciation for what they have together.

“We’ve got each other and the kids and we’ll be fine,” Jack Reed said. “Nothing else really matters.”

Finding reprieve

“You guys are great shoppers,” Amanda Reed said Tuesday morning as she helped other Ridgeview Elementary students finish their holiday shopping.

She beamed again, a smile spreading across her face.

Jack Reed was with her in the school library and was one of several volunteers who manned the small store.

Getting Penguin Patch to these students was part of Amanda Reed’s handiwork; she helped start the program three years ago at Ridgeview Elementary when her son attended school there and when she was School Accountability Committee president.

She patiently guided the children through the multitude of gifts scattered across several tables Tuesday in the Ridgeview library. Students slowly examined ring holders for grandmothers, tiny tape measurers for fathers and coffee mugs for mothers.

The gifts here are inexpensive — the highest priced item costs $9 — so they’re affordable for young children, Amanda Reed said.

A company ships the merchandise to participating schools, she explained, at no cost to the schools.

It’s not a fundraiser, she said. It’s just a way to give children a chance to buy a little something for a family member.

“It’s just to see those kids be able to give to their families, especially when a lot of people (are) in hard economic times. I mean, it’s just rough out there, you know?” she said.

“For them to be so excited that they can give to somebody else is just awesome to see.”

The Penguin Patch program, along with her volunteer work at Sunset Elementary, takes her mind off the pain, she said.

“Here you go, sweetie,” she said Tuesday as she handed a child a small parcel of carefully packaged gifts. “You have a merry Christmas.”

Her voice belied no hesitance, her face no sign of pain — just friendliness and joy.

Click here to have the print version of the Craig Daily Press delivered to your home.

Comments

Becky Plummer 2 years, 11 months ago

Could you tell me what Dr. finally diagnosed your condition and where he is located at please?

0

reedfamily 2 years, 11 months ago

It was a radiologist that pretty much diagnosed me. I have yet to find a doctor willing to take on my case. I hope you aren't suffering with the same thing, I wouldn't wish this on anyone. Are you suffering from the same symptoms?

0

Becky Plummer 2 years, 11 months ago

I have pain in my right shoulder blade area that has been going on for about three years now. Dr. McKey made it quit through massage for a day or so and then Rita made it quit with a deep muscle massage for a few days and by the use of an inversion table that releives the pressure around the bones and helps it feel better for a time but the pain always comes back. It hurts so bad at times that I can't even lean back and touch my back against a chair or bed or anything. So I dont know for sure but am looking for answers as well.. Thank you for responding.. Hope you feel better soon.

0

reedfamily 2 years, 11 months ago

I am so sorry to hear that. Mine is my collar bone that started to swell about a year and a half ago. The swelling never goes away and when the pain is so bad, all I can do is sit still until it resides. Have the doctors given you any ideas what it could be? Thank you for caring and hope you feel better soon.

0

Becky Plummer 2 years, 11 months ago

I have only been to the Chiropracters not an MD yet but plan on doing that soon, until this article I just thought it was a pulled muscle that wouldnt heal, so now I will go to see a Dr. about it. So thanks for the article I will get it taken care of now.. Thank you..

0

reedfamily 2 years, 11 months ago

I am glad my article could help you. Hope you get to feeling better soonl.If I can help you please let me know.

0

Requires free registration

Posting comments requires a free account and verification.