It is a place of quiet rest that I have found when I am writing. I hope that someone will find my musings helpful in some way. Psalm 23:2 "He makes me lie down in green pastures, he leads me beside quiet waters, he restoreth my soul."
My Green Pasture....
Thursday, July 7, 2011
A Rare Disease?
I have always known I was different than everyone else! I have always felt sick... I mean my entire life! I kind of thought just maybe I had a small touch of being a hypochondriac or maybe a bit psychosomatic? But then I ended up having two sets of twins just a year apart..that in itself is a bit on the rare side if you ask me! Then another fairly rare occurrence was the sudden infant death of one of my babies. Soon after all of my babies were born I began having some weird neurological symptoms and was told I may have Multiple Sclerosis and went through literally years of doctor visits and tests to prove or disprove the theories of way too many doctors. At this time the doctors began throwing around the thought that I may indeed have a rare autoimmune disease but to figure out exactly which one would be a challenge!! The idea of Lupus came into play, I had a few surgeries thrown in the mix and a herniated disc in my neck out of the blue, which ended me up with a neck brace for about twelve weeks. About three years ago now, I began to lose weight for no apparent reason and lymph nodes were popping out here and there. Low grade fevers for no real reason and problems with my ears filling with fluid. Bone pain, joint pain, muscle spasms, extreme fatigue, severe headaches and migraines have been amongst the symptoms all along over the many years but especially this last year. I have never even so much as had pneumonia, so when I began to have severe chest pains this past April I was pretty surprised that it was my lungs. I went for a pulmonary function test and did not do well. I was then sent for a chest x- ray which showed a lung nodule and some enlarged lymph nodes in the chest. Immediately I was sent over to the hospital for a Cat scan with dye which showed two lung nodules and several lymph nodes enlarged. I was advised to have a PET Scan which is used to show up any cancer. Done. The lung nodule in the upper lobe of my right lung and fifteen lymph nodes all lit up brightly which I was told looked very suspicious of cancer. I would have to have biopsies done! First biopsies were done on some of the lymph nodes in my chest through an EUS fine needle aspiration and this showed Sarcoidosis, however it was the opinion of a few of my doctors that the lung nodule could be lung cancer and should be biopsied also and the only way to biopsy it was to do a thoracotomy. So here I am after this lung surgery, recovering, telling you about it... if you can ever avoid lung surgery.... do it!! But at least now I am sure that I do not have LUNG cancer. What I am not so sure about is the other lymph nodes that lit up in my lower abdomen and there is some confusion as to whether they all have Sarcoidosis or if some may be cancer? So .... I know about the one disease and will deal with that! It is a rare disease just like me. Am I happy about it? Of course not... I am thankful that I do not have small cell lung cancer as that is one of the fastest growing cancers! However Sarcoidosis is a disease that affects all of the vital organs and it already is affecting my lungs! I have felt lousy for a reason for this past year... so to all who have felt that I have been lazy or faking .....look it up and you will see what a nice disease this is! There is no cure as of yet and really from what I have read most of the treatments have some pretty rough side effects and don't really help a whole lot, so I am in for a rough ride! One day at a time .... that is all any of us have anyway!