Recent doctor visits

Well what can I say, a lot of explaining to the doctors about what symptoms that I am experiencing and as usual a bunch of tests were ordered. Still having the symptoms and nothing has been done. My Rheumotologist suggested that I write to the main hospital here and suggest that we get a Sarcoidosis specialist there so that I won’t have to travel to get answers. So far I am seeing about 7 or 8 different doctors and none of them are Sarcoidosis specialist. Not saying that they are not aware of what this disease is, but they are constantly looking on the internet during my visits to find out how they should treat me. Nothing is working. I am getting tired of being tired.

I have been experiencing pain down my left side and my PCP even felt the granulomas in my back and under my ribs. Yet she still thinks that the pain is muscular. Tell me why when the spasms are severe, they are localized on or around the nodules? I need someone to know what they are doing. My labs were done and my Pulmonologist called to tell me that I am severely anemic and my iron levels are very low. Wow! What else is new? I need to know what to do for these granulomas that are growing in my body. This happened before when I told my Opthomologist about the nodules in both of my eyelids and he ruled them as my lacrimal glands being blocked. NOT! Six years later and the end result of me looking like Mike Tyson beat the crap out of me, I went to another doctor who removed large granulomas out of my upper and lower eyelids the size of large gumballs. They were later ruled to be Sarcoidosis granulomas. If only these doctors would listen.

The need for more Sarcoidosis research is necessary. Too many of us are dying unnecessarily because doctors don’t have a clue. I don’t want to die anytime soon. I want to see my children obtain their dreams and also see my grandchildren. Is there help out there????

Fibromyalgia flare up

People do not understand pain. Pain should have a new definition and my picture should be next to it. Not being able to eat or sleep because the pain hurts so much. Being scared to go to the hospital because you don’t want the possibility of being admitted and having no one to care for your young daughter. All of these things are going through my mind and is what I am currently dealing with.

I was on twitter today and a friend of mine gave me an inspirational message that I thought that I’d share. It is what made my gloomy attitude change into a positive one. "A healthy life doesn’t require a life w/o pain. A healthy life requires a balance of positive throughout the pain." Isn’t that a wonderful statement. Julie developed a new movement of reaching not only those suffering with Sarcoidosis, but also everyone who deal with debilitating pain. It is called "being a spoonie". What that means is that we are those who are very sick but don’t look sick, therefore we are not being taking seriously by society in general or even the medical community. We complain about our ailments but some look at it as if we are mental. Well this pain is reality and it is not only affecting me, but it also affects my family emotionally and physically. They have to take on tasks that I usually do. Many people may look at this as being not important, but when your eleven year old daughter feels the need to be the caretaker of her mother, that becomes a problem for me. I have already taken away the childhood of my older daughter, now it is happening again with my youngest.

Please participate in any and every method of creating awareness for Sarcoidosis and help us to find a cure.