About Sarcoidosis

Sarcoidosis is an auto immune dieseas that affects one's Lymphndes. It causes an abnormal amount of white blood cells to be produced. Which in turn causes the good parts of your body to be under attack from white blood cells, not just germs... as white bloods cells normally do.

Sarcoidosis is rarely fatal with caucasions. The most common cause of fatality associated with this dieses is scartissue build up on the lungs. We must be keep a vigelant watch over these such effects.

There is currently no treatment for Sarcoidosis sufferers, other than pain killers. When first detected they use Prednisone to beat back the disease and shrink the lymph nodes. In some cases, such as mine, it does not help. A cause? There is no known cause. It is suggested that Pine dust may be linked but there is no proof. Recently 6 State Office workers contracted the disease in one state building. The office was closed but they are yet to determine anything.

Anthony's Day with Sarcoidosis:

♦Average day (almost no physical activity, to get thru day):
• Waking with extremely painful joints (5:00 AM). –fades by 8:00 AM to mild pain.
• Feeling lethargic throughout entire day
• Early afternoon (12:30 PM – 4:00 PM sporadic). Very lethargic, very heavy to move, tough to want to be awake. Head feels very heavy and under high pressure, arms very heavy to move and joints hurt as well (no headaches but head feels like it is pressurized/body feels swollen, tough to think, concentrate and talk to anyone- this pain makes me very nasty).
• Driving – ok to drive short trips (no active destination... or return trip very easily ends with one of the two scenarios below).

♦Hard day (days with high activity –busy work day or shopping trip):
• All same symptoms as above but much worse, maybe twice as bad.
• Plus:
• Joints, and or extremities, will get very hot. Not all at once. It kind of floats throughout or is random. So hot that when a stranger puts their hand on say... my knee (even with long-underwear and jeans on) they will say “WOW, that is so hot”.
• Temples have lots of pressure, not really a headache. (like pressure above but increased)
• Heat, makes me very heavy feeling. Room temp above 70 degrees enhances all my symptoms very rapidly. Almost like a paralyzing effect with becoming week and very heavy.
• Driving – Not a good idea (hard to focus on the road, car wanders over lanes). The ability to use energy is decreased. While driving I do everything I can to save energy. Do not turn head, just eyes - using both hands to turn wheel (hand over hand), not my body/arms to turn wheel. No talking. Clutching and shifting is hard/painful. Co-driver is a must for return trip, can’t predict return trip feelings. Thus I need some to drive back.
• Stability- Body is occasionally wobbly. Ladders are out of the question.
• *Swimming – body is very tired very fast -minutes. When getting out of pool gravity takes over again and it is hard to even stand, real struggle to walk.

♦Extreme day
(labor –hammering, lawn care)(also like living my former life, only these were daily events):
• All same symptoms as above but 3-4X worse
• Plus:
• Muscles in arms will feel like a broken bone. For example the middle of my forearm hurts so bad I would say it feels like a broken bone. (Riding mowers not hard to steer but is too much for my arms. Had to buy a tractor with power-steering).
• Chest feels very heavy. Very hard to breath, noisy. Many tests done during this sensation and lungs were 110% on all tests.
• The more my body is dealing with the harder it is to think. Spelling and concentrating/verbalization gets blurry. Conversation is very difficult as the wrong words are spoken (with me thinking correct thoughts)
• Driving – Very unsafe (impossible to focus on the road, car wanders over lanes). All the same as last description but not possible to look out for other drivers, will drive right off the road without a co-pilot. Co-pilot is a must. Clutching and shifting is very challenged.
• Stability- Body is very wobbly. Standing up is difficult (from rest), once up… staying up is challenging but possible. Tripping over everything, with each step.

How do you function?

Every action is mapped out for the least amount of activity. In other words, every daily project involves planning every step, to cut down on the activity (movement). Everything from dressing to showering; from making lunch to washing dishes.

A random example:
Changing a car’s oil. All tools must be gathered before the job and placed under car. During the gathering, I must walk very slowly and little movement to conserve energy. Once on the ground I can not get up and down as it robs severe energy needed to finish the task. I must craw on the ground for the duration of the project (usually I wear snow pants for the comfort on muscles and joints but then heat build up is a sever issue –slows me down further). At end of project I abandon all tools (may skip adding new oil until later – and hope I remember later to add the oil) and drag my body inside to lie down and sleep for 1-4 hours. Before sleeping, every muscle is in pain from top to bottom. Body is very hot and mood is very unpleasant to others… as I am dealing with enough to get somewhere to lie down.

Longer projects get risky because of missed steps. I start to lose track of what has been completed and what needs to be completed. I am at this point in “Extreme Work day” symptoms and it all falls apart rapidly. More pain is registering in my thoughts than steps to finish the project. Projects are then canceled.

Ironically an oil change was a 20 minute (or less) task for me 8 years ago. Fun and done with a smile. Now it takes me an hour on a good day. It then costs me several days of pain following the project. Makes going to work very difficult for the following days and it just keep snowballing. So a simple task, taking a few minutes before, now lingers for days to weeks.

What family, friends and strangers see?

Each time I leave my house it feels good to get out. When I see someone I have not seen for days, or weeks, I get excited. I then have my adrenaline pumping. I pace around a room and act out as thought there was nothing wrong with me. This is very deceiving to others. It comes across as I am better or may only feel bad a few times a day. This is not true; in fact, when I get out and act this way with others… it makes things dramatically worse. I can say being with family brings me to “Extreme Work day” status rapidly. How do you explain this to others? You can not without hurting their feelings. I just have to bottle it up and feel sad (or preferably angry) because of it, as people just don’t understand. I honestly find this the hardest part to live with. I can live with pain, hurt, limited pleasures in life but not having people miss-understand.

In closing, thank you for taking the time to read about Anthony's life with Sarcoidosis. It is good to have everyone understand the situtation along with Shannon and Anthony.

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