Benefits because of sarcoid

Sorry John I might of worded it wrong.....what I was trying to say was the likes of DLA or PIP payments because of the way it affects every day living.....meaning benefit system with living in the UK.........

I hear you John and that was what my doctor thought as well.  When i was dx'd with sarcoidosis, my  husband said "schew, at least it's not cancer". and the doctor said, "not really, as they have "cures" for a lot of cancers now but, sarcoidosis there is no cure".  Just wanted to share a similar but different ending to that "cancer" scare.

Frustrated

Hi Frustrated - Thanks for telling me about your experience. When I was diagnosed, 8 years ago, we thought, no biggie - It won't kill me, and in 90% of cases, sarcoid goes away on its own. No such luck for me, though it has left my chest cavity and moved south, where it's enyoying it's new residence in my liver and spleen. I don't think it'll kill me, unless annoying me to death counts - John

Hehe~ can relate to that "annoying me to death".  It's a ungiving disease once it's attached itself to all the "residences" inside us.  It's when it just doesn't give up and starts with the heart etc that one should take notice.

What are they saying about your liver and spleen? 

Hope all goe well for you, please keep us updated to your condition?

Frustrated

Well, most likely it already has taken a shot at my heart and screwed up my ignition system, so now I have electronic ignition, which is working very well. My oncologist has been monitoring the Nice Little Sarcoidies in my liver and schpleen. No increase in size for the last 2 1/2years. Good. I have a flare-up every July - severe back, neck, and head pain, increased calcium, extremely low energy and a nice dose of depression. Pain so severe that I prefer to pop some percocet tabs. Last July, they performed a blood infusion to lower my calcium. Seemed to work in 3-4 weeks. Are we having fun yet? - John

hi John ~

Does this electronic ignition a pace maker?  Saying that, pacemakers are what they use for those with the "irregular heartbeat" sarcoidosis causes in the heart,

Just curious.

Frustrated (sorry you've been going through so much for all these years)

Ya - Got me a pacemaker, including the high-end custom package that has a built-in defibrillator. I've had a slight, seldom-occuring irregular  heartbeat all my life, as does my son, as did my dad - minor enough so that all 3 of us passed our navy physicals - so there's no telling what created my need for a pacemaker. 

What is your Sarcoid Saga? - John

Hi John ~

I was dx'd in 2005.  I was in a horrible auto accident and had many surgeries w/i a short period (6 mths), exactly 4 surgeries.  Spinal fusion from 2 breaks in the back and a fractured neck.  Had a bi-lateral embolisms afterwards and that caused yet one more surgery to insert a greenfield filter. I was told that the last surgery would only take 10 mins but it took over 2 hrs because my veins are all crooked and winding.  So, this put my immune system at risk because of all that stress on the body and because of alll the pain, I hardly slept, that alone is bad on the immune system.  So, after all the surgeries and the low immune system, my body was attacked with a vengence of sarcoidosis.

First started in the lungs and lymph nodes.  Approx. 5 mths later, spread to my throat, ears/nose cartiledge, fingernails (although that's believed to be from sjogrens as I have that "sjogrens" in the eyes).  I also have it on the gums, skin and now in the heart.  I've had several MRI's set up for the heart and since the sarcoidosis is back in my lungs, I have a pulmonary function test scheduled.

That's my life for the past 10 years and truthfully, it sucks!  I was a very active person, yoga, walking 20 miles a week, jazzersize and a swim exercise class.  I also raised 2 children who were active with sports and arts.  I worked fulltime.  Was active at our local city level with things I believed strongly in, particular education, sports and the arts program.  I was also active with that fight at the State level as well.  My life was full, full, full.  Many have told me that perhaps I was too full and this is God's way of slowing me down.  Why on earth would God slow anyone down if they are doing good for others.  Geesh.  This happened because of the accident in 2004 and the second in 2013.  Both left me with debilitating injuries and mucho pain!

So, not such a great story but it is what it is.  I have my "depressed" days then I have GREAT days.  Mostly, it's inbetween.  At times cannot even get out of bed due to the severe pain in the back.  My spinal surgeon believes that the sarcoid is in my spinal canal.  Who knows?

Thank you for asking. I hope this didn't bore the gajeebers out of you!

Warm regards,

Frustrated

Not boring at all! Puts my petty complaining into perspective! Thanks for telling me. As for God,  can't figure that dude out! - John

In my opinion, he's all good!  Life gives us things we'd rather not deal with but at least I do have a good family and lots of friends that are very supportive.

And, you do not have "petty complaints".  You bring a lot to this forum so please, continue!  You seem very positive with what you're dealing with and all of us need a dose of positivity!

Thank you

Frustrated