I decided to copy this since there are many people who don't know what sarcoidosis is -
Sarcoidosis
A disease characterized by inflammation of the body's tissues, sarcoidosis is a multi-system disorder found in the lungs, skin, joints, eyes, central nervous system, heart, liver, kidneys, lymph glands, and other soft tissue organs. To the medical community, it is known as the "great masquerader" because it mimics other diseases and conditions making it difficult for doctors to diagnose and treat. Definite diagnosis is further hindered because it can dwell in the body in an asymptomatic state (no symptoms). It is further characterized as persistent inflammation in the form of lymphocytes (a type of overactive blood cell) which causes the formation of what is called "granulomas." The granulomas appear as lumps or nodules (singular or as clusters) in the body ranging in size from a pea to a fist. As sarcoidosis maneuvers throughout the body, the inflammed granulomas create scar tissue and block the function of vital organs which can cause permanent organ and tissue damage at the rate of 20 to 30 percent of all diagnosed cases. Sarcoidosis can present itself as shortness of breath, a dry cough irritating lingering cough, chest and back pain, weight loss, malaise, chronic fatigue, listlessness, fever, skin rashes, red bumps on the legs, arms, and shins, stiffness of the joints, swelling and arthritis of the ankles, wrists, hands and feet. Symptoms can sometimes appear and disappear spontaneously or remain active for a life time. Sarcoidosis manifests in the lungs 90% of the time and is often described solely as a lung disease. Irreversible lung damage occurs in 20% of cases. There are four stages of pulmonary sarcoidosis ranging from mild to advanced. Progression of pulmonary sarcoidosis is measured by the degree of lung involvement which may not affect the body in consecutive order. For reasons unknown, there is a higher occurrence of sarcoidosis in the African American community. African American women contract the disease at twice the rate of African American men and have more chronic and debilitating cases. The death rate for African Americans is 15-17 times higher than Whites. For 18% of African Americans diagnosed, 12% have a family member (mother, father, sister, brother) with the disease. It is estimated that over one million people have sarcoidosis in the United States. Sarcoidosis is known to be fatal for 5-10% of diagnosed cases. *Information from The Sarcoidosis Awareness Network's Web site
Byron's sarcoid is in the rare 2% that attacks his bones & only late last year did it finally attack his lungs - to what extent that it's attacked his lungs I'm unaware since he stopped bringing me to his doctor's appointments now that he's getting worse & his sarcoid doctor told him "You want to keep her she's good for you" since when I go to the doc appts I make notes & relate to all of the docs involved with his care what the others have said & the Rxs that have been prescribed as well telling the details of the drinking that Byron's done since the last visit since alcohol consumption does need to be taken into consideration for some of the Rxs - Byron was unaware that the docs pay attention to whats being said by me as to whats going on in our relationship & his actions since a couple of times that he's missed doc appts I've had to explain to them why it needed to be rescheduled & the docs which are in the same complex do relate to each other whats going on so that they can adjust the treatment plan as needed
Originally Posted By: MisingMyHubby
Originally Posted By: kml
MMH - Just some odd thoughts about H's sarcoidosis. Have been doing some reading that autoimmune thyroid disease is very prevalent, esp in men over 40 with sarcoid:
Ellie I think the link that you had originally put here you made in error since it was a link to an atty in colorado & had nothing to do with the satcoid discussion so I deleted it out
And since there are various autoimmune diseases where going on a gluten-free diet (the treatment for celiac disease) can cause a remission of the other autoimmune disease:
Seems to me, if his sarcoid is getting worse, he's got nothing to lose by trying a gluten-free diet. You can look at http://www.celiac.com for more info on the diet.
Ellie
Thanks for stopping by & posting the links on the sarcoidosis - I'll visit them & bookmark them for a later time when Byron's ready to deal with the information - right now his motto is so long as he can deny it then it must not be so - a bad ingrained habit that he's learned from MIL Mary
Actually Sarcoidosis is prevelant among young black men & women especially high in those populations who have been or are in the military (Byron was 1st diagnosed with sarcoid while he was serving in the Navy over in Iceland)
they have had no explanation as to where it's coming from since sarcoidosis is from unknown outside sources rather than being inherited as most diseases are but more people are starting to learn about the disease with the advent of the internet & as it's being found in more people around the world
those who are in their later years when they go into their history it's usually found that the people had been suffering from it back in their younger years but that they had been misdiagnosed by doctors who aren't familar with sarcoidosis & the fact that it imitates many other diseases depending upon those areas which are affected -
Byron is in the 2% group that when it's active it hits the bones & eyes while his lungs are showing clear so the lung tests that would alert most sarc patients never alerted for us -
in fact I'm the one who told the general practioner that what he was seeing on the xrays was most likely sarcoidosis rather than bone cancer which is usually a secondary cancer after cancer has already been in the body but typical doctor mentality is that patients don't know a thing doctor shashtri was insisting it was cancer & part of the hand would have to be amputated & of course he poo-pooed me for the research which I'd found on the internet even though it was from a college medical report that i found out the information about the stats on sarcoidosis & the fact that 2% of people get it in their bones & even saw xrays of what sarc in the bones looked like on the site
the orthopeadic & oncologist both said after the surgery that what ever it was it wasn't cancer that they were looking at so it most be "that disease that you were talking about 'cause it's not like anything which we've ever seen before a grey jelly like mass with what looks like sand in it"
You know the old saying about leading the horse to water but we can't make 'em drink... well that's been Byron since the sarcoidosis has come out of remission to stay since 01 when the above happened
the problem he's been in as much denial about just how bad he's actually making his own self - even after the docs have told him time & again that he's got to take his Rxs properly & live healthier... Byron was even threatened with being kicked out of the prestigious Remicade study which he was lucky enough to get into & so many sarc patients were wishing that they could've been a part of at the time
when Byron's ready to accept fully that he's got to eat & live healthy then I can once again start back onto his healthy diet, but alcohol for his body is one of the things which sets his sarcoidosis off on his body
I have no control over what he eats in terms of his diet while he continues to live with his mom so to worry about what he is or is not eatting & drinking I've given up on since all it does is give me stress over something which I have no control over in the 1st place, when Byron's home again is when it'll once again be my responsibility to make meals for him that will help Byron to regain his health but for now it's something which God will have to deal with
LimboLand can be liberating in that sense once a person comes to be comfortable there - a firm set of boundaries in place & as observer only Byron's got to handle his own messes & it's not my job to try to unravel the knots or pick up the pieces unless he invites me in to his domain of life it's only my job right now to be available to encourage him along on his road in life & to be supportive of him regardless of his choices -
it's Byron's job to learn from the mistakes that he's making & to deal with the issues that he has from the past it's my job to pray for Byron at this point & God's job to answer those prayers in His time & in His way... I've seen many prayers answered directly & others that I see are in process & in God's wisdom He knew that this time period although not what I wanted has been very much a time of growth as well as pruning for me just as much as it is for Byron
When this is over it'll be all to God's Glory not any human will be able to take credit for restoring this marriage just like the vision of the dry bones
well I need to get this post onto the board I started it last nite before I went to Intercessory Prayer meeting at church & left it all night & now need to get g-son & self out into the air & hopefully Daughter will be able to come join us in the park later on & bring g-son's bike out to the park so he can ride it around
