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Thanking God

Today is my youngest daughter’s 9th birthday.  I am trying to muster up enough strength to help her enjoy it when she gets home from school.  I cooked one of her favorite dinners and it is all ready for her.  It is truly hard to see the look in your children’s eyes when you are trying to hide the pain but they know that it is there.  I was able to do more with my older children like scouting and various other after school activities.  My youngest is at that age where she wants to learn gymnastics and join the girl scouts.  With my older children I was their scout leaders and very active in both the Boy and Girl Scouts of America.  I miss camping outdoors and all of that good stuff.  I hope that God will allow me to provide my daughter with those activities.  Living on one income instead of two makes is more difficult too.
 
  
 

Not feeling well

Today I literally have no energy to even type this blog.  Feeling very drained and having trouble keeping my food down.  Hate that feeling.  So basically I am going to keep this brief. 
 
Take care all and pray for me as I do pray for you,
 
  

Contacting others to promote awareness

Today I am a little more upset with the media.  We have to wonder why Sarcoidosis is still not a hot topic.  I remember the death of Anna Nicole and Heath Ledger.  Both of their deaths were continually discussed for more than a month after their death.  The causes and reflection of their lives stayed in the forefront of many reports.  Well here we are again with the death of another great comedian and it is being dismissed as being something that it was not.  Sarcoidosis is truly a debilitating and catastrophic  disease.  The pain is tremendous.  Just to try to do daily chores or get out of bed leaves me feeling drained.  Right now I am emotionally drained at  reading the many many blogs about the disappointing coverage and misleading information.  Many are glad that more and more people are researching this disease and more awareness is being made, but there is always room for mass media representation.  There are reports that Oprah and Dr. Oz were being contacted.  Will let you know when that is achieved.  I, myself have contacted Ukee Washington and will contact Fox News also.
 
Stay tuned

 

Promoting Sarcoidosis Awareness

Alerted about this article on my Sarcoid support group site.  Thought that I’d share..
 
From: webbednumber

Sent: 8/13/2008 5:48 PM
i found this om a site thought you might read itSarcoidosis can damage organs all over the body

BY JUDITH GRAHAM • CHICAGO TRIBUNE • August 13, 2008

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Andrea Wilson felt sick to her stomach Saturday when she heard comedian Bernie Mac had died in a Chicago hospital.
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It was her private fear — the fear of sudden death — suddenly splashed across the news.

Like Mac, Wilson has sarcoidosis, a mysterious and sometimes devastating immune system disorder that causes cells to cluster and can damage organs throughout the body.

Last year, the disease jumped to her brain and started causing stroke-like symptoms — vision changes, numbness in her left side, tingling in her face and mouth — as well as extreme pain. When sarcoidosis flares up in her skin, she gets lesions on her face, knees and legs and lumps "like cauliflower growing out of your body," said Wilson, 43, of Chicago.

When it becomes active inside her heart, she gets palpitations and feels like she’s going to faint or have a heart attack. Wilson has had two heart surgeries related to sarcoidosis damage. The disease has also made a home in her lungs, causing its signature symptoms — shortness of breath, wheezing and difficulty breathing.

There is no cure for sarcoidosis, an affliction that hits adults younger than 40 and disproportionately affects African-Americans, especially women. Sometimes the illness is mild and goes into remission, but sometimes it is severe and unremitting, causing progressive damage to multiple organs. Often misdiagnosed, sarcoidosis remains a little known disorder, even in the medical community.

Bernie Mac’s publicist has said the comedian’s illness was in remission and wasn’t related to the pneumonia that killed him at age 50. Still, pneumonia is a frequent complication of sarcoidosis, and the medications people take to control the condition make them vulnerable to infections.

Faith Lundy of Houston said she was diagnosed with pneumonia twice last year before doctors performed a chest X-ray in December and discovered evidence of sarcoidosis.

"It felt like I was dying," she said Monday afternoon. "I was running a fever of 104 degrees and it was hard to breathe. I was weak, and I couldn’t sweat it off."

In May, Lundy, 41, collapsed at her job during a flare-up of the disease. Her eyes are so dry she needs to put in drops daily; blindness is a potential complication. Lundy’s chest aches, and climbing stairs now takes all the wind out of her.

"It’s hard because a lot of people don’t understand what I’m going through these days. Nobody has heard of sarcoidosis. Nobody knows anything about it," Lundy said.

Like many people with sarcoidosis, the news of Mac’s death hit her hard. "It scared me real deep," she admitted. "I was like, oh my goodness, could that happen to me?"

In Zion, Ill., Brenda Harris knows a lot about how vulnerable sarcoidosis patients are, physically and emotionally.

Since being diagnosed in April 1989, Harris has had four bouts of pneumonia and six hospitalizations. "The medications you take suppress your immune system and then you get staph infections, fungal infections and bacterial infections," she said.

Harris is lucky in a way; her disease is relatively stable and confined to her lungs. But there, it’s wreaked significant damage, and the upper right lobe has been removed.

Emotionally, the uncertainty associated with sarcoidosis — never knowing when you’re going to have a flare-up or how serious it will be — is one of the hardest parts of dealing with this disease, patients say.

And then, there’s the loneliness of "having this disease with the funny name that no one knows about. You feel very isolated," said Harris, who this year started a sarcoidosis support group in Lake County, Ill.

One day, you might be racing around and the next day you might not be able to even get out of bed — that’s how fickle this illness can be, said Gwen Mitchell, 54, who’s lived with sarcoidosis for 18 years.

Back in 1990, before she got the diagnosis, doctors told her for six months that she had walking pneumonia. "I couldn’t talk, I’d be coughing so hard, and it’d go on for 15 or 20 minutes. They kept giving me stuff and none of it would help," Mitchell said.

After collapsing on her way home from work, her husband’s physician suggested she be tested for sarcoidosis. Mitchell has had pneumonia twice since then and tends to be hospitalized multiple times a year with complications.

As for Mac’s death, Mitchell said: "I’m sorry to see him gone, but he’s bringing a lot of awareness of sarcoidosis to the forefront, and that’s a good thing."

It took four years for Sandra Conroy, 62, to be diagnosed with sarcoidosis after symptoms started to appear in 1980. Often, the condition is mistaken for other diseases, from arthritis and asthma to fibromyalgia.

For three years, Conroy’s left leg would start dragging — she’d try but couldn’t pick it up — then return to normal. Multiple tests and visits to several medical centers were inconclusive. Eventually a bout of pneumonia put Conroy in the hospital for six weeks. Her vision was the next to go, as the outlines of objects blurred and "all I could see was shadows."

Two sets of experts delivered two diagnoses. One group thought she had multiple sclerosis, the other sarcoidosis. A biopsy eventually confirmed sarcoidosis in her lungs and evidence of the disease in her brain.

Today, Conroy uses a wheelchair, unable to walk. "The hardest thing for me is, doctors still aren’t really sure how to treat (sarcoidosis) symptoms," she said. "There’s a lot of research on what to do for other diseases, but not for this one. So, it can be hard to get the proper treatment."
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sickofbusinessasusual wrote:
This is such a little known disease, and you don’t hear much about it until a celebrity dies, such as Bernie Mac and Reggie White. I was diagnosed with this after a lymphoma scare. Fortunately, the symptoms went into remission and haven’t returned in 8 years.
08/13/2008 11:58:40 a.m. EDT
This is such a little known disease, and you don’t hear much about it until a celebrity dies, such as Bernie Mac and Reggie White. I was diagnosed with this after a lymphoma scare. Fortunately, the symptoms went into remission and haven’t returned in 8 years. sickofbusinessasusual
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flamincheney wrote:
My father passed away from Sarcoidosis related complications in 1998 at 49.

While I am glad to see that this disease it is getting some coverage in the MSM it is extremely disheartening to hear the Mac family and publicity team so quickly distance themselves form the disease by claiming the pneumonia was unrelated. I would bet a large sum that it was absolutely related.

I just wish they’d use this tragedy in a positive way to spread knowledge of a disease, and to potentially get funding for additional research of it (there is very limited funding available- could it be because it is largely a feminine black disease?). Instead they are playing the role of the scared ostrich.

08/13/2008 11:04:36 a.m. EDT
My father passed away from Sarcoidosis related complications in 1998 at 49.

While I am glad to see that this disease it is getting some coverage in the MSM it is extremely disheartening to hear the Mac family and publicity team so quickly distance themselves form the disease by claiming the pneumonia was unrelated. I would bet a large sum that it was absolutely related.

I just wish they’d use this tragedy in a positive way to spread knowledge of a disease, and to potentially get funding for additional research of it (there is very limited funding available- could it be because it is largely a feminine black disease?). Instead they are playing the role of the scared ostrich.

flamincheney
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Archimedes wrote:
I miss you already Bernie!
08/13/2008 10:53:43 a.m. EDT
I miss you already Bernie! Archimedes
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greatone0248 wrote:
What an awful disease
08/13/2008 9:29:54 a.m. EDT
What an awful disease greatone0248
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photo

Bernie Mac died of pneumonia, a frequent sarcoidosis complication.

(AKIRA SUWA/McClatchy-Tribune)
For more information

• Foundation for Sarcoidosis Research, http://www.stopsarcoidosis.org, 312-341-0500.

• National Sarcoidosis Resource Center, http://www.nsrc-global.net, 732-699-0733.

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Delaware Sarcoidosis Support Annual Picnic

DELAWARE SARCOIDOSIS SUPPORT GROUP ANNUAL PICNIC

 

 

 

The next meeting of the Delaware Sarcoidosis Support group will be our annual picnic.  Details are below. 

 

The Annual Sarcoidosis Picnic has been scheduled for:

 Wednesday, August 13th at Anne Glass’s House

902 N. Broom St

Wilmington, DE  19806

If the weather is nice we will have an outside barbecue with hotdogs/hamburgers, etc. 

If you are able, please bring a dish to pass.

Please feel free to contact me with any questions – I look forward to seeing you there!

Will

Will Braunlein  

Program Specialist

American Lung Association of Delaware

1021 Gilpin Ave

Wilmington, DE  19806

302.655.7258

Help Line 1-800-LUNG-USA

www.lunginfo.org  

Physical Therapy Dilemma

Talked to my Rheumatologist yesterday and he confirmed that he wanted me not to continue physical therapy at that facility.  He stated that he gave clear instructions as to what type of physical therapy that I was to receive.  After speaking with the facility, he was very disappointed in the fact that they decided to add to his instructions without consulting him, and also exacerbating the pain without any concern.  He went on to state that he would be increasing the dosage of Neurotin (Gabapentin) soon. 
 
Just thought that I would keep you informed.
 
Take care,
 
Lynn