Saturday, July 23, 2011

Hope For Answers

Sarcoidosis,Fibromyalgia, and...... don't know ....??? Maybe, I never will know. I have been to a few doctors this past week and am convinced that Sarcoidosis is indeed a "Rare" disease. There are very few doctors  who actually have a wealth of knowledge on this disease and even fewer who know how to treat it or what the prognosis will actually be for the patients who have this. For me, I don't like to have a "mystery" disease therefore I research as much as possibe. Why can't doctors do a little research for the benefit of their patient? I had one lung nodule removed from my right lung along with a wedge of lung. I still have a nodule in the lower lung and from what I have researched these will just continue to grow and form in other organs as time goes by. The center of my chest is painful and my lung feels as if there is a knife stabbing in there every time I inhale. The other chronic symptoms that apparently all go along with Sarcoidosis I have been having for a very long while but most intensely the past year. Headaches, muscle aches, joint and bone pain, night sweats, extreme fatigue, poor balance, eye problems, abdominal pain, flu-like feeling...and more. It is not a type of cancer but has been linked somehow to lymphomas. My Pet scan was back in May when I had started to have lung symptoms  in April with severe chest pain, shortness of breath, pain under my right rib. The Pet scan showed up many lymph nodes. Of course the ones in the chest were biopsied and turned out to be Sarcoidosis. No cancer cells were found in those. The lung nodule was also biopsied and that also turned out to be Sarcoidosis. My diagnosis then was Sarcoidosis. It is highly unusual for lower abdominal lymph nodes to be involved with Sarcoidosis. This is the why  of needing an oncologist to look at the Pet Scan to see what his opinion is. It would be nice to get some answers soon however, since this has already been since April, and if by some chance these lymph nodes are cancer I can't help but wonder if they are growing while all of this delay is going on?" Stay positive" is what my Drs keep telling in the world is that going to give me answers? All I can do is wait for the next appointment and hope that my doctors will do some research and will be able to help me before I get too sick to care!

Thursday, July 21, 2011

Good To The Last Drop

My son found this old can of Maxwell House coffee underneath the kitchen stairs when we were tearing up the floor a few years ago. It still has coffee in it and has the original key opener on top. I remember the commercials for this they advertised it was "good to the last drop"! I do sometimes drink mine down to the very last drop especially on mornings when I really feel the need for extra caffeine! This made me think about all of us with a chronic illness. So many of my friends have mentioned at one time or another how they feel like life is over for them or their real purpose in life in through because they are now just sitting around sick all of  the time or in a wheel chair and can't get around to do much.  I say this to myself first of all and then to all of my chronically ill friends .....determine that you are going to be "good to the last drop". There is still something you can do  and someone somewhere that needs you even if you don't think so. I have heard people say to me at times..they wished there was something they could do for me besides "just pray"...but I say that if you can at "least" pray then you have done a lot! You can sit in a wheel chair, or lie in a bed and pray for other people. You will never run out of people to pray for... there is always someone somewhere in way worse condition than you are. I have found this to be true. Don't give up on enjoying the simple things. Life is made up of a ton of little things all put together. I have learned to appreciate the simple things by being sick. When I do feel well and get out and enjoy my day... it is a breath of fresh air. I plan on being good to the last drop... it ain't over til its over!

Tuesday, July 19, 2011

Confusion it's not one of my symptoms! It is what is caused when you see too many doctors for the same problem. Right now I am in the middle of trying to figure out which of my doctors I should be listening to and which are full of hooey! When I went to my primary care doctor on Friday of this past week, she urged me to see an oncologist to review the recent pet scan. Keep in mind that this Pet Scan which is supposed to show up cancer, lit up 15 of my lymph nodes. Several were in the upper chest area and several in the lower abdomen. Also the lung nodule showed up which is why I had to have the surgery recently to remove the wedge of my lung. It was not lung cancer, but was said to be sarcoidosis. Also some lymph nodes in the chest were examined and said to be sarcoid. Usually Sarcoidosis affects the lymph nodes in the chest but can sometimes affect the abdomen however it is rare. Sarcoidosis and Lymphoma can co exist in the same patient at the same time so this is the concern of my primary care who has watched my health deteriorate over the past few years and this past year most dramatically. When I mentioned to the Pulmonologist that I would like to see an Oncologist before I decide on a treatment for the Oh MY....he got very upset and defensive as if I hurt his feelings! It is my life we are talking about here buddy! If I commit to a year long treatment plan on Prednisone as he was suggesting and I have Lymphoma too, then what in the world is the point of me going through all of the nasty side effects? Besides, I was put on Prednisone back in the day about twenty years ago by another doctor who also told me I had "some kind of autoimmune disease" but didn't know or care to find out which, so just dosed me with it. I did not do well on it.  Well... after I proceeded to explain to this doctor how rare of a person I actually am...he gave me the referral . I told him I will decide upon a treatment after consulting with the oncologist.