Saturday, February 28, 2009

Day 1

Day one off the prednisone, no hang ups as of yet. I do feel a lump in my thought but it's been there before and it's gone now. I feel lighter so I should take advantage of that and kick off a weight dropping campaign, might not be a bad idea I have a vacation coming up. 

Thursday, February 26, 2009

Prednisone free (for now)

OK the latest, My lymph nodes on my face shrank down so my face no longer looks like I'm storing nuts for the winter. I lost 8lbs thanks to last's weeks barfOthon. I went in today for my check up, and on Xray my lungs are really clear besides some scarring. And my breathing tests came back good. I'm currently on 5 mgs of prednisone and for the first time Dr. T just told me to quit. No going to 2.5 and then 1 mgs. Just no more. Last time I stopped I had to ween down to 1 mgs and I was declared in remission. This time we'll see. I'll stop the preds and see how long The sarc will stay away. What's weird is that this happened quick just last week I notice my lymph nodes were gone.

Now I got the hernia thing to take care of but I'm thankful it's just that I thought something else was wrong with me.

I don't want to say I'm in remission yet but the fact that my x rays looked so good compared to 6 months ago make me feel good about the whole thing.

Sunday, February 22, 2009

Another trip to the emergency room

i just got admitted to a room. 
i was having breakfast around 11am when all of a sudden i get hit with this pain in my abdomen. im thinking it's my lymph nodes again. after some time the pain intesifies sorry for all the typos btw crappy touch screen keyboard. the pain was unbearable, long story short they think it's small bowl blockage maybe caused by hernia or old scar tissue from previous surgery. they say it's not sacoid related but ibwas thinking if it ws hernia it might have been caused by recent surgery

the pain went away and i feel good no meds yet just a ct scan

The above is what I wrote from the little internet device from the hospital room. I just got home. I spoke with a surgeon who thinks it's a hernia in my navel area. Possibly left vulnerable from a previous sarc related surgery in that very same spot. 

The pain was just unbearable, I thought I was going to pop out one of those aliens like in the movie. 

Missed a toasters show tonight because of this.

Friday, February 20, 2009

Crap for a Cure!

This is a part of a grassroots campaign lead by The Gardener to raise awareness and in this particular case Money for sarcoidosis. I was emailing back and forth with TG telling him that I wanted to hold a garage sale and send the proceeds to FRS Foundation for sarcoidosis research. He thought is was a great idea and took it a step further by designing some banners and yard signs. OK them we got ourselves something here now. 

TG thanks for your support on this. I am probably holding this garage sale very soon, as it's still too cold up here. I will also post all of the fun on here and who knows maybe together we can raise a significant amount of money this spring for FRS . I'm getting ready now with the following:

Make an inventory of everything I want to sell, (TVs stereos books and furniture mostly.)

Get the signs and banners!

Have my sarckie shirts clean and ready to wear that day!

Send out an invite to all the local sarckies!

Have some fresh coffee in the AM and some hot dogs on the grill in the PM

check with the town to see what date

Put in play some cheep advertisement that focuses on the neighborhood (town newsletter, craigslist)

Any other ideas I'm all ears!

Sunday, February 15, 2009

Sarc sufferers dealing with other illnesses

Friday I was having lunch at a spot I haunt in my route. I had some pork with rice and veggies. I carried on with the rest of my day. I had a meeting that evening and after the meeting we had dinner at the office. I noticed I was a bit full still from lunch so I just sort of had a sampler plate of everything that was there. It was buffet style as they brought in some caterers. On my way home around 8pm I called my wife and let here know I wasn't feeling to good and when I got home an hours didn't even go by until I started to regurgitate. I was praying to the porcelain gods for the next several hours until the diarrhea started, I had shivers was really cold despite the heater being on full blast. At about 2am I had enough and told my wife to take me to the hospital. By this time I'm dehydrated can barely speak, can't breath I'm Fatigued to the point that when I walked in to the emergency room they put me in a wheelchair. Well I know it's too late to make this story short but I'll try. They hook me up to IV fluids and gave me something to stop my vomiting. However I had to runs and I soiled myself while there, (never in my life). When the doctors came to look at me they were concerned because my blood work showed my white blood cell count way up and he said this might be the prednisone or it might also suggest something like Chrons disease since It runs in my family. I looked at my wife and told her not to worry it's not chrons I told the doc that My white blood cells are high because of the steroids and opted not to do the ct scan they wanted me to do. The couldn't diagnose me but I feel pretty confident that it was contaminated pork that did this. I finally got home yesterday around 8:am and rested the entire day making sure to keep hydrated .

My thinking is and I'm not sure about this so maybe someone can clarify, but those of us with sarc when we get hit with something like this or even just a common sold hits us harder that healthier folks? It sure seems like it, that or I'm just a big baby.

It just so happens the receptionist at the hospital also had sarc. Interesting huh? we are out there!

I'm at home resting up but I am feeling better now although I do have a tightness in my chest I started eating solids foods today. I should be good by tomorrow.

Thursday, February 12, 2009

UK sarcoidosis awareness petitions *UPDATE* NOW AT 564 Signatures!

He has promoted this on various sites and now he is featured in the local paper in Linwood where he lives.

Great Job Keith!

Lingwood man petitions prime minister about disease

Keith Bigland from Lingwood who suffers from the disease sarcoidosis, Photo: James Bass.

12 February 2009 12:10

Sarcoidosis petition on

A Norfolk man is petitioning the prime minister for more support and information about a little-known medical condition.

Keith Bigland, 41, from Lingwood, near Acle, has gathered 330 signatures so far on his petition on the Downing Street website. He suffers from sarcoidosis, a debilitating condition which causes tiny lumps in or on the body. It can affect many organs, particularly the lungs, and can even be fatal.

Mr Bigland's condition is mainly in his liver and causes him headaches, vision problems and loss of memory which makes even making a cup of coffee a difficult ordeal.

He has had to give up his job at Sainsbury's, although he hopes to return there when he starts treatment. He has been suffering from symptoms for three years and was diagnosed just over a year ago, but is still waiting for treatment because the condition is so little-known. He is also a carer for his wife Sue, who has a long-term medical condition.

His petition calls on Gordon Brown to promote awareness of and research into sarcoidosis, and warns that misdiagnosis can even lead to organs being removed wrongly.

He said that he and fellow sufferers have been buoyed up by the response to the petition. He said: “The petition has lifted everyone's spirits. It is all about awareness at the moment and this is helping to raise awareness.”

Petition link at

Monday, February 2, 2009

Over doing it,

I know I'm not in the best of shape and sometimes I don't know how far I can take my body before it extracts revenge on me, BUT I try anyways. I love the outdoors and for the last two years I either felt I couldn't do anything or just didn't feel good enough to go out. This year I either feel better or am not scared anymore. Whatever the case is I over did it last Sunday when I hiked several miles in the snow in a north Jersey forest. I came home overly exhausted and had a tight chest (couldn't breath for several hours). In fact I couldn't even sleep from the breathing. For the next couple of days I was just spent. Sometimes it's worth it and sometimes it's not. All in All I consider myself lucky to even get out at all.  The picture above is a paddle in the icy Passaic river I went on a couple of weeks ago. It's what cabin fever does to you I guess.

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United