Faces Of Sarcoidosis - Home

Faces Of Sarcoidosis - Home

Sarcoidosis Shame

I think it is a downright shame that this rare autoimmune disease that has been around for a very long time is still so unheard of! I think it is a shame that people are dying from complications of this disease because there are too few doctors and nurses who even have information on this disease. I think it is a shame that when you are in the hospital and mention that you have this disease  the staff have absolutely no idea what disease this is! I think it is a shame that people who have hardly begun their lives are dying from this when there could be something done! I think it is a shame that doctors tell their patients that this disease is nothing to worry about and that they will not die from it like cancer... when in reality it affects the whole body, damages organs and disables. I think it is a shame that the social security administration still does not acknowledge in full that this is a disabling disease. I think it is a shame that when looking for a physician who deals with only Sarcoidosis.... it is next to impossible to find! When is any of this going to change? It is true that not everyone with Sarcoidosis has it to the same extreme, but believe me  when I say that if you had this you would not want it! Every single day there is pain, discomfort in my chest, joints, back, under my ribcage, headaches, muscle spasms, numbness, tingling in hands and feet, night sweats, very little sleep,moodiness,pain through the shoulder blades, itchy and burning skin, extreme fatigue,and yet each day I try to get up and do the many things that need to be done around the house or run the errands, pay the bills, organize my husbands pills, etc. I still await any real help from my doctors. At best I have an appointment once again coming up with the Pulmonologist who deals with Sarcoidosis of the lung but obviously I have much more involvement than that. We will see which treatment plan he decides upon. Pretty much whichever is decided upon is only a small help anyway. There is no sure fire cure or any one medication that really works all that much better without side effects. This is really a shame that more research is not being done and that there are not more fundraisers and campaigns to raise awareness amongst the medical professionals concerning this. I give a hand to Cleveland Clinic in Ohio...they actually seem to be the most updated on Sarcoidosis and actually seem to be helping people, but what about the rest of us sarc patients who cant get to Cleveland? There needs to be a Sarc clinic in every major city at least!

Sleeping With Sarcoidosis

I wonder if anyone else with Sarcoidosis has been having the sleep issues that I have been having. They must since it seems they all talk about chronic fatigue...pretty much I believe the chronic fatigue comes into play because of the fact that I don't ever get a full night's rest. Usually I have no problem falling asleep but within a couple of hours I am wide awake with night sweats, and usually some kind of horrible pain going on. Sometimes all of my joints and bones... sometimes everything... sometimes the headache! Usually I end up taking a second round of pain meds in the middle of the night to make it through the second half. I toss and turn and catch a few winks in between and then around 5:30 or 6 my cute little dog decides it is time to get up! If I happen to just lay there and try to rest then she will search the floor for a sock to dangle in my face. So, in order to avoid that nastiness I usually get up at her prompting. I am OK throughout the morning after my extra strong coffee to get me pumped but about 2 every afternoon I have the worst case of fatigue ever. I don't dare take a nap or I know I won't get to sleep at all at night so I just fight it .  I sure wish there was a magic pill that would help me just get the rest I need. In between these few hours of coffee drinking and onset of major fatigue.... is when I have to try to get something accomplished even when my body is telling me to forget it! It takes a lot of "get up and go" to do this when you feel like this every single day! Hats off to all of my other friends with this awful chronic illness that makes you feel terrible...and to all of my friends who have another disease and keep on keeping on day after day in spite of it! Here's to a good night's sleep!