SARCOIDOSIS. Have you ever heard of it? I had not either, until one day in November 2010, I noticed a lump that had formed on my right forearm. I head on to my reg Dr. She refers me to a surgeon. After that visit, I am scheduled for surgery in 4 days to remove & send off for testing. Scared, worried, but dtermined that I believe that God will not give me more than I can handle. He will never leave me. But I also need to depend on my family. I get through the surgery (not too bad).
Advance a week later, I am giving a diagnosis of SARCOIDOSIS! What is This? I google it.
Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.
Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.
These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.
In people who have sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body. http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html
Some of you may know that I also struggle with Fibromyalgia (20 years now). Now to add this to my situation? I could ask "Why me?" but then I think "Why Not me?" But then I go on & the next 2 months have been very tough!! I am directed to go to a Rheumatologist. I am relieved that I already have a Rheummy (as I call him) that I have seen for the past 20 years for my Fibromyalgia (FM). I do not like adding new Drs to my life!! I have enough now to handle. Thanks anyway.
So off I go to my Rheummy. They take a chest x-ray. They are spots of Sarcoidosis on my lungs. Certainly may explain the chest pains & shortness of breath, that I have had for the past few weeks? I am put on Prednisone. This is a Devil Drug!! It just makes you feel horrible!! I am EDGY, MOODY,NERVOUS. Then go for recheck 10 days later. Ohh did I mention I also have Diabetes? Ok so now I have. Prednisone makes Blood Sugar go WACKO!! Through the roof~over 600. It is supposed to be below 150. SO I increase my Insulin from 40 units to 75 units! Still struggle with my Blood Sugars (BS). SO my Rheummy decreases my Prednisone & adds a Chemo Drug to try to combat this Sarcoidosis.
A month later, all the lumps continue to grow & many more are formed. I now have them on my face. Added to the prednisone, my face is quite chubby now! GREAT!! I would be ok with this~~if there would be an Improvement in this Sarcoidosis. I have growned to hate all these new words in my vocabulary. I have NO ENERGY!! I thought before, with the FM, that I had no energy?? Ohh no, Now I have NO ENERGY!! Ughhhh
So here I am on Prednisone & the Chemo Drug. I take the Prednisone each day & the Chemo Drug once week. I decide to take the Chemo on Saturdays. For the next few days, I am wiped out. I have a couple "better" days each week.
I barely get out of my house. I am always in PAIN! I am HOT & then I am Freezing! I have chills. I am sweating. I dream off having Fun & enjoying life. I try to keep my spirits up. I am on my laptop alot~on Facebook, reading blogs. I normally enjoy cooking & miss trying out new recipes. I collect more recipes & hope to one day, try some out again. I love cooking. I watch Cooking Channel & Food Network.
So I go back for recheck on Feb 13th? I think~have to check my Calendar. Normally, on my Dr days, my Mom comes with me. It is an hour drive one way. We enjoy our time together. We shop. We eat out. We used to do this so much more, back when I had energy? :(
I am sad to say, the drugs are not yet working. More lumps are forming. My Dr said that it takes a good while to build up the Chemo Drug! I want a Fast Cure! I am not getting it. It has been almost 3 months & it feels like forever!!
Would love to hear from anyone who is familiar with this disease. I am determined to get this Blog going with my life determining the subject.
Hugs & Blessings,
Pam
Advance a week later, I am giving a diagnosis of SARCOIDOSIS! What is This? I google it.
Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.
Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.
These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.
In people who have sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body. http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html
Some of you may know that I also struggle with Fibromyalgia (20 years now). Now to add this to my situation? I could ask "Why me?" but then I think "Why Not me?" But then I go on & the next 2 months have been very tough!! I am directed to go to a Rheumatologist. I am relieved that I already have a Rheummy (as I call him) that I have seen for the past 20 years for my Fibromyalgia (FM). I do not like adding new Drs to my life!! I have enough now to handle. Thanks anyway.
So off I go to my Rheummy. They take a chest x-ray. They are spots of Sarcoidosis on my lungs. Certainly may explain the chest pains & shortness of breath, that I have had for the past few weeks? I am put on Prednisone. This is a Devil Drug!! It just makes you feel horrible!! I am EDGY, MOODY,NERVOUS. Then go for recheck 10 days later. Ohh did I mention I also have Diabetes? Ok so now I have. Prednisone makes Blood Sugar go WACKO!! Through the roof~over 600. It is supposed to be below 150. SO I increase my Insulin from 40 units to 75 units! Still struggle with my Blood Sugars (BS). SO my Rheummy decreases my Prednisone & adds a Chemo Drug to try to combat this Sarcoidosis.
A month later, all the lumps continue to grow & many more are formed. I now have them on my face. Added to the prednisone, my face is quite chubby now! GREAT!! I would be ok with this~~if there would be an Improvement in this Sarcoidosis. I have growned to hate all these new words in my vocabulary. I have NO ENERGY!! I thought before, with the FM, that I had no energy?? Ohh no, Now I have NO ENERGY!! Ughhhh
So here I am on Prednisone & the Chemo Drug. I take the Prednisone each day & the Chemo Drug once week. I decide to take the Chemo on Saturdays. For the next few days, I am wiped out. I have a couple "better" days each week.
I barely get out of my house. I am always in PAIN! I am HOT & then I am Freezing! I have chills. I am sweating. I dream off having Fun & enjoying life. I try to keep my spirits up. I am on my laptop alot~on Facebook, reading blogs. I normally enjoy cooking & miss trying out new recipes. I collect more recipes & hope to one day, try some out again. I love cooking. I watch Cooking Channel & Food Network.
So I go back for recheck on Feb 13th? I think~have to check my Calendar. Normally, on my Dr days, my Mom comes with me. It is an hour drive one way. We enjoy our time together. We shop. We eat out. We used to do this so much more, back when I had energy? :(
I am sad to say, the drugs are not yet working. More lumps are forming. My Dr said that it takes a good while to build up the Chemo Drug! I want a Fast Cure! I am not getting it. It has been almost 3 months & it feels like forever!!
Would love to hear from anyone who is familiar with this disease. I am determined to get this Blog going with my life determining the subject.
Hugs & Blessings,
Pam
