Tag Archives: sarcoidosis

Sarcoidosis Caused by Gluten Intolerance and Celiac Disease?

The faces of Sarcoidosis patients, caregivers and friends are varied and range the emotion gamut from intense concentration to learn new things and adding to a great sense of humor and feeling of camaraderie within the group.

When we finally found where we needed to be, the Old Guy grabbed a wheelchair to move us at a fast clip. We went in the furthest distance entrance from the Mt. St. Helen’s room at Good Sam hospital in Puyallup – it seemed a good ten mile walk inside that huge hospital. They need Yellow Brick arrows painted on the floors or walls to guide folks around between the old hospital and the new hospital.

I knew the meeting was on gluten free food but didn’t connect that it is thought that gluten might cause Sarcoidosis among other things. I was shocked to discover that there is a medical condition called Celiac Disease caused by gluten intolerance and perhaps causing Sarcoidosis and a whole range of other things that might be cleared up just by changing what we eat.

The speaker, Nadine Grzeskowiak, RN CEN of Corvallis, Oregon was an ER nurse for 16 years and by the time she was 40 years old – in November 2006 she was finally diagnosed with Celiac Disease. Nadine thought she would be dead in six months or less. She is a dynamic speaker and her presence alone states a good case for our investigation.

A few high points are that standard medical testing doesn’t work. “Celiac disease occurs in genetically predisposed people of all ages and ethnic backgrounds. The proteins in wheat, rye, barley and sometimes oats cause an inflammatory auto-immune response that can and does affect every organ system in the body. If left untreated, celiac disease can lead to lymphoma, bowel cancers and much, much more.”

“Think it doesn’t affect you, your family and friends? Think again.”

***

This morning I did a Gluten Free Google search and found an article May 2010 in the North Kitsap Herald by Leila Arciero about a newly opened Gluten Free Bakery and Market in Poulsbo!

Martha Hofmann, Michelle Hofmann and Lisa Garza living gluten-free with limited access for proper food decided to open their own store and share their hard earned knowledge and food to others in the same gluten-free boat.

http://blogs.pnwlocalnews.com/glutenfreefoodies/ http://www.yourglutenfreebakery.com/

According to the article, Lisa Garza has Celiac disease, runs the Gluten Free Foodies blog and hosts a monthly gluten-free and food sensitivity support group. The problem is the Celiac disease body is unable to process the gluten and protein found in wheat, barley and rye.

http://www.pnwlocalnews.com/kitsap/nkh/business/93787379.html

Rain storm on the way to Puyallup…I care about rain photos because of Kitsap Frames topic this week.

Meet Lynn Short…the head honcho and patient who knows more about Sarcoidosis stuff in Washington State…maybe the entire Pacific Northwest than almost anyone or so it seems to me. Lynn Short, Sarcoidosis Networking, is a wonder of organization and determination and almost singlehandedly with her husband makes Sarcoidosis information available to anyone. She is a human library of Sarcoid information and believes in educating the patient. She has been doing it for years and puts out a great informational newsletter.

(253) 826-7737 www.sarcoidosisnetwork.org

Nadine Grzeskowiak, RN CEN – (541) 602-1065 – Nadine@GlutenFreeRN.com www.GluutenFreeRN.com

Dani Martin – her expression I’m sure mirrored mine and everybody else at that meeting. I’ve seldom gotten so much information at any meeting – surprising and shocking for the most part. Dani works at the Pierce County Health Department.

Dani Martin – Linda Fulghun

Kenny Harelson

Beverly Proby – Islamah Rashid

…not another picture…when I asked for just one more…had to get it right…thank goodness for digital and a good sport!

Kai MarQuis – Jeff Smith

Reina Heck

To everyone, thank you for letting me take so many pictures until I had the right one. I’m getting my eyes checked next month…

More later…. Sharon O’Hara

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Lung Disease Meeting Wednesday

Sharon O'Hara

I hope to see you on Wednesday for the next Harrison Medical Center’s Respiratory BB Support Group Program.

I’m disappointed we’re not having the meeting I’d expected with a Sleep Study M.D. doc and an explanation of … “is cycling healthier for a lung patient with right heart failure than walking.”

http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/16/is-cycling-healthier-for-a-lung-patient-with-right-heart-failure-than-walking/

That said, I’m looking forward to the topic of the newest home and portable nebulizer machines and hope new nebulizer meds are mentioned In particular, I’d like to know what the latest nebulizer medications are and how they work in comparison to the old Albuterol.

***

Wednesday, March 16 – 1:00pm – 3:00pm

Better Breathers Support Group

Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.

This Support Group is held the third Wednesday of each month.

Dates and Locations

3/16/2011

1:00pm – 3:00pm

Rose Room

Harrison Silverdale

1800 NW Myhre Road

Silverdale, WA 98383

Home Nebulizers and Medications

We have a speaker for you this month from MedEquip Homecare Company. MedEquip is part of the Rotech family of hometown healthcare companies. Tony Vondran will be speaking about the newest home and portable nebulizer machines. In addition he’ll be teaching you about home nebulizer medications and meter dose inhalers and their proper use.

Please join us for our great topic and some St. Patrick day treats.

Speaker: Tony Vondran, RRT

Registered Respiratory Therapist

MedEquip Services, INC.

Topics: Home Nebulizers and Medication

Joyce Belnap, RRT

Supervisor

Respiratory Therapy Department

Contact Info

Pamela O’Flynn

360-744-6685

respiratorycare@harrisonmedical.org

***

If anyone needs a ride to the meeting, let me know. See you Wednesday!

More later… Sharon O’Hara

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Sarcoidosis + Gluten Free = A Gluten Free RN Speaker

Sharon O'Hara

Sarcoidosis Networking Association Support Group

“There will be a speaker at the March 12, 2011 SNA Support Meeting.

Nadine is a Gluten free RN from Corvallis, Oregon and will speak to us about living Gluten Free and will answer all questions.

1 pm to 3 pm – Saturday, March 12, 2011 – Good Sam Hospital – Mt. St. Helens room near the chapel and the er.

Meetings for the year 2011 are:

March 12, 2011 – Good Sam Hospital

May 14, 2011 – Good Sam Hospital

July 9th, 2011 -Picnic at Lynn Short’s home

October 8, 2011 – SNA Medical Conference – Oregon State University Hospital, Portland Oregon

December 10, 2011 – Christmas get together, Good Sam Hospital

I need input from you about what you would like to see at this year’s support meetings.

Please e-mail me with your comments.

Thanks –

Lynn Short, Executive Director

Sarcoidosis Networking Association

5302 South Sheridan Avenue

Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

Good Samaritan Hospital

Directions from North Kitsap:

Merge onto WA-3 S

Turn left at WA-16 E Partial toll road 26.8 mi

Take the exit onto I-5 S toward Portland 4.7 mi

Take exit 127 for WA-512 E toward Puyallup 0.4 mi

Turn left at WA-512 E 9.9 mi

Take the Meridian St S exit toward Puyallup 0.2 mi

Turn right at S Meridian 0.1 mi

Take the 2nd left onto 15th Ave SE

Destination will be on the left

401 15th Ave SE – Puyallup, WA 98372

FYI: We Sarcoid’ites are lucky to have such an active support group in Washington State. To my knowledge, Lynn heads the only support group we have in this state. She is ably assisted by volunteers – Sarcoid’ites helping Sarcoid’ites.

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

I am going and have room for four additional passengers – let me know if you need a ride.

More later…. Sharon O’Hara

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Sarcoidosis Christmas Party Meeting

Sharon O'Hara

It’s time for the Christmas Sarcoidosis support group meeting. It will be held on December 11, 2010 at Good Sam Hospital, Puyallup WA in the Mt. St. Helens room –the same floor as the ER by the day surgery waiting room.

The holiday meeting runs from 1 pm to 3 pm.

Look forward to seeing you there.

Our scheduled speaker had to cancel for this meeting.

She will reschedule for the spring meeting.

Thanks –

Lynn Short,

Executive Director

Sarcoidosis Networking Association

5302 South Sheridan Avenue

Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

(If anyone wants a ride to this meeting, let me know… Sharon)

More later… Sharon O’Hara

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Political Medicare and Tricare Travesty

Sharon O'Hara

Greetings…Medicare and Tricare patients – we may soon be up that creek without a paddle if we don’t take action now. I sent the following letter this morning to my legislators through the American Medical Association’s website to protest against further cuts to our physicians. They are already penalized by taking Medicare and Medicaid patients now. If this new cut goes through, patients like us won’t even have a canoe up that creek, much less the paddle.

***

“Dear Legislator’s… Don’t force physicians to make the choice to of not treating Medicare or Tricare patients or go out of business for lack of income and not be able to treat anyone.

The medical profession is the only profession in this nation to be penalized by the work they do – working in health care. accepting Medicare or Medicaid patients penalize the very people working to provide health care to our citizens – our physicians.

Forcing additional physician related medical cuts will effectively take care of too much government care costs by getting rid of seniors and our retired military to make room for the baby boomers beginning to enter the system. Is that what you want?

I fit into both categories, a senior on Medicare and Tricare. My medical team already loses money every time they see me.

How dare the government control what should be private industry KNOWING these additional cuts will drive doctors out of business and/or be a death warrant for patients like me left stranded without medical assistance.

My husband is retired military, we’re both seniors – he is my ‘caregiver.’ I have COPD, Sarcoidosis, Bone on Bone left hip Arthritis, RLS, Lymph-edema, Psoriasis and Other Stuff.

My parents legally immigrated to this country, the land of their dreams, knowing they were only limited by their own imagination and willingness to work. For shame that America could be reduced to a government willing to harm their retired military and seniors by reducing the medical care needed for their survival.

The Medicare patch Congress passed last June is only a temporary reprieve for the seniors and baby boomers who rely on the promise of Medicare. In December, the Medicare cut to doctor services will be a whopping 23 percent, increasing to nearly 25 percent in January.

It’s a tragedy that Congress has let Medicare erode into an unreliable, unstable system for both patients and their doctors.

We need a long-term solution to this annual problem, so you will no longer need to apply short-term Band-Aid fixes to stop impending cuts that get worse year after year. And don’t forget – baby boomers begin entering Medicare soon, and if this problem isn’t fixed, these new Medicare patients may not be able to find a doctor to treat them!

The vicious cycle of short-term delays that make the cuts worse and raise the cost of real reform for American taxpayers must come to an end.

This is a dangerous game of Russian roulette with seniors’ health care. Sick patients can’t wait any longer for you to do the right thing. Please stabilize this broken payment system before the damage is done and cannot be reversed.

Don’t allow a bad system to get worse.”

***

Please let your voice be heard.

http://www.ama-assn.org/

Sincerely,

Sharon O’Hara

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COPD, Professor William MacNee Clicked for this COPDer

Sharon O'Hara

FLASH

Ref: Early detection public COPD Spirometry, World Spirometry Day and World COPD Day

I called our health district yesterday and spoke with Cris Craig, Kitsap County Health District Public Information Officer. She couldn’t answer my question about the health department offering free spirometry to the public. She did say in a cheerful voice she would call in about three weeks with a response. THAT is good news and she didn’t ask what COPD was – even better.. A hopeful sign and may mean that Spirometry will be offered and made available to the public. I believe in miracles.

Professor William MacNee and the Royal Infirmary of Edinburgh Scotland, UK website has superb graphics – the best explanation of COPD (Chronic Obstructive Pulmonary Disease) I’ve seen in one place. His ‘The Latest Trends in COPD Research’ graphically shows why early detection Spirometry is important.

For many of us COPD is an ongoing magnet for other disease, including some really difficult stuff. COPD and lung disease can be the beginning of a long list of personal medical challenges expanding the patient’s medical disease library. Whatever needs to happen to avoid COPD in your life get tested for early detection and do whatever is needed to get it done.

My son, Al and I were visiting family in Northern Norway in1997. I didn’t know then my 40 year smoking habit was almost over. And so was I. I was beginning to feel sick. The day after this picture was taken, I had to see a Norwegian doctor. She examined me and prescribed medications for Pleurisy and Chronic Bronchitis. The medication worked, the pain receded and we were back on schedule. Within a couple weeks after this picture was taken and five days after returning home, I was in the hospital.

Life as I’d known it was over.

COPD is a friendly disease. For me, once Emphysema (COPD) got settled in my lungs and got comfortable, she began to invite her Other Stuff Disease buddies for a sleep over. Trouble is, they stayed over and didn’t go home. They joined COPD trying to play Havoc with my health and life.

Following COPD was an open lung biopsy and Sarcoidosis – Sleep Apnea – RLS – Psoriasis – Venous Stasis Dermatitis – Cellulitis – High Blood Pressure – Lymphedema – and bone-on-bone Arthritis, left hip followed – to name a few.

Early detection Spirometry can stop COPD early – before it’s too late. Ask your doctor.

This is where it gets tricky. Health care is a huge problem. COPD generally takes twenty years developing before a person mentions symptoms to the doctor and by then about fifty percent of the lungs are destroyed….leading the patient to a long slow smother and the taxpayer choking form the cost.

Offering free Spirometry testing for early COPD detection gives the individual warning. If the problem is not genetic, it can be turned around. Telling isn’t enough – SHOW people what COPD can do to them and their families. Let them meet willing patients who can show and tell… a real reality show.

Exercise works and muscle utilizes oxygen better than flab. We can breathe better and move easier. Exercise and understanding COPD gives us a quality of life back – to be the best we can be. The recumbent trike takes us places we couldn’t easily go without one – fun stuff, building muscle at the same time. We must keep moving … ask your doctor.

I did not qualify for lung reduction surgery or I would have opted to get it ..not enough good lung and I heard rave reviews from patients who had had one. One COPDer told me the lung reduction surgery restored his life back to ‘normal’ and lasted about five years before time and COPD danced ahead. Ask your doctor about it.

Pursed lip breathing training is a must for COPDers – it keeps us out of the panic mode and out of the hospital. It has for me…and I tested it with my oximeter.Talk to your doctor about pulmonary rehab. It is never too late to get better through our own efforts…what does your doctor say?

Photo taken by the photographer who traveled with the Trek. This photo shows me on my recumbent trike flying the COPD/EFFORTS safety flag and pedaling over Deception Pass with the American Lung Association of Washington’s three day bike ride – the Trek Tri Island.

It was the first time I had been away overnight from my house in seven years – since Harrison Hospital in 1997. A slow trike rider, it is thanks to the wonderful volunteers who hop scotched me and my trike ahead of the other 200 plus bike riders time after time that enabled me to pedal 50 miles of the 137 mile trip. I felt free again.

Key motivators were the Shortness of Breath Study at the University of Washington Medical Center that I was lucky enough to qualify for and my online support group, EFFORTS. Proof to me that educating COPD patients work.

Stroke patient, Mary Griffith and her butterfly and gold star fingernails caught my eye the other day – more about Mary and husband, Doug later)

Kitsap County Health District … Will you be the first county health district in the nation to see the fiscal benefit of early detection Spirometry to protect citizens of ALL ethnic background.

The Kitsap County taxpayer and COPD future could rest in your hands.

Thank you Professor William MacNee for a great COPD informational website and allowing me to use it here.

http://www.efanet.org/activities/documents/WMcNeeLatestTrendsinCOPDResearch. pdf

More later… Sharon O’Hara

Part 4 of 4

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Googling for COPD Finds an Old Letter

Sharon O'Hara

I wrote the following about 2004 for the American Lung Association and re-found it goggling for COPD. I’m posting it here in hope you will see the value in early detection Spirometry testing.

“Hungry for Air: Breathing Better Together

“Living with COPD/Emphysema and Sarcoidosis was a living death. I existed. I struggled to breathe, when I moved I panted, gasped for air like a fish out of water.

As I slowly showered and dressed, ready to go somewhere, I couldn’t sit down to rest. I fell asleep.

I went from a physically active life landscaping, restoring a wonderful property in Port Townsend to a blob who existed in front of her computer.

I searched the world web to discover what COPD/Emphysema was – what Sarcoidosis was, everything, anything I could find out about my diseases and the medications I took.

I couldn’t sleep in a bed – I couldn’t breathe – I dozed sitting in a chair.

By the time I arrived at the Pulmonary Department at the University of Washington Medical Center, I believed my days were numbered. Previously diagnosed with COPD/Emphysema, an open lung biopsy showed the fibrosis and granulomas of Sarcoidosis evenly throughout both lungs.

Without energy, I felt isolated, without a purpose, a shell, a mockery of the person I used to be.

I regretted a 40-year smoking habit, but didn’t dwell on it. The single most difficult thing I’ve ever done is stop smoking. I craved cigarettes and for the first time understood a drug addict’s ‘craving’ for a drug. I craved a cigarette many times a day, then almost daily for more than two years. Even today, occasionally the urge to smoke a cigarette becomes almost overwhelming.

That is how I felt then. Today I’m energized with purpose.

I found a support group online – the non-profit EFFORTS, begun by COPD’rs, run by COPD’rs and filled with folks like me working to change the world’s awareness of COPD. I want other lung folks to know they are not alone and how they can lead the best quality of life possible.

I want to see Spirometry tests for patients. common place among physicians – to catch COPD early – before it is too late. Other than stop smoking, the single most important thing Lungers can do for themselves is exercise.

And from the time I learned of the American Lung Association® of Washington’s Big Ride Across America, it is my dream – my goal.” – Sharon”

Part 2 of 4 More later… Sharon O’Hara

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Sarcoidites, Ribs, Hamburgers, Hot Dogs All Provided = A PICNIC

Sharon O'Hara

Sarcoidosis Networking is getting ready for their annual picnic Saturday, 10 July 2010 from 1 pm to 5 pm.

Sarcoidites. – get ready for the provided scrumptious ribs – hot dogs – hamburgers.

All we have to do is bring our choice of dessert, chips or a side dish. That’s easy. Getting ready to have a great time is even easier.

. If anyone wants a ride or to car pool, let me know…

More later… Sharon O’Hara

xxxxxxxxxxxxxxxxxxxxxxxxxxx

[Once again Sarcoid Networking Assoc is holding it’s annual picnic at Lynn & Mel Short’s home July 10th from 1 pm until 5 pm. All are invited to spend the day with new and old friends. We will provide the ribs, hot dog’s and hamburgers. All you need to bring is either a side dish or chips or dessert. Please RSVP me, so I know how much to cook.

Thanks –

Lynn Short,
Executive Director

Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/
253-471-0423 home
253-826-7737 office
lynn@sarcoidosisnetwork.org e-mail ]

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The University of Washington Rocks!

Sharon O'Hara

The University of Washington is a God send to us. I wrote the following in answer to a letter to the editor and decided to add it here as well.

“The University of Washington ‘elitist’? If ‘elitist’ means dedicated fine professors teaching a subject they they live their work. They teach what they are passionate about to kids eager to learn.

It was the University of Washington’s Medical Center Specialties and Dr. Raghu specifically with then, Super Fellow, Christopher Goss, who gave me an open lung biopsy and found the granulomas and fibrosis in my lungs to prove Sarcoidosis added to emphysema (COPD)

When I had a sudden loss of ability to breathe, the local pulmonologist just handed me a steroid inhaler to add to the others he had prescribed and I was on my way out the door.

Mom’s worry. My mother worried that her daughter all of a sudden lost even more ability to breath and nothing was being done. She strongly pushed for me to get evaluated through the U or the Mayo Clinic. We needed to know.

I went to the U. The following letter is a direct quote from a Thank you card I have written out but forgot to leave there last week after my appointment.

Dr. Raghu –
Dr. Goss –

“Thanks for all you do for us now and in future to make the next generation of lung patients fewer, I hope, living quality lives.
When I first came here I never expected to live out the year much less be here years later and looking at tomorrow.”

The doctors at the U are open minded, they look and think about the entire body, not just lungs. Had I not gone there, I would not be sitting here now.
Their doctors are open minded and actually THINK. They treat their patients like partners in their own care and work together.

The old type doc and his “I Tarzan, You Jane’ mentality is over. Patients have a right to be involved and understand what is going on and what they can do to help themselves.

The University of Washington offers stellar, quality, educated medical people and professors. Who wouldn’t want the best training available?

That said, my own primary care doctor, Dr. Eady, is right here in town. If she ever moved I’d have to move too…same with my pulmonologist at the U. They, and others, are examples of medical care and caring not easily found these days.

I haven’t even touched on the superb Nursing Program at the U…in fact they lead THE COUNTRY…ask US News and World Reports…they are #1.

Is this what you call ‘elitist?

University of Washington – you rock!

Read more: http://www.kitsapsun.com/news/2010/jun/09/my-turn-is-university-of-washington-only-for-the/?comments_id=233309#ixzz0qyxBonTy

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Sarcoidosis Support Group

Sharon O'Hara

Sarcoidosis Support Group for our area (Sarcoidosis Networking Association) is having a meeting this Saturday, 10 April 2010 from 1:00 pm – 3:00pm in the Mt. St. Helen’s Room at Good Sam Hospital in Puyallup.

Lynn Short asks that we bring our questions and ideas to share with other Sarcoidosis’ites.

Anyone need a ride to the meeting? Let me know.

http://maps.google.com/maps?daddr=407%2014th%20Ave%20SE+Puyallup+WA+98372

Lynn Short, Director
Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA
http://www.sarcoidosisnetwork.org/

More later…. Sharon O’Hara

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