It is a very weird feeling that comes over you when you have been the subject of so many tests over months and then.....it's over. You would think that a feeling of relief would flood you and you would do a dance because no more pokes in the arms, no more stand there and breathe only when I tell you and no more barium mixed in applesauce. Believe me there is relief but there are also a lot of questions.......what now?
Most people who have chronic illnesses go through an array of testing when they first get sick and periodically through out the rest of their lives. It is mostly to monitor what the medications are doing to you and what result they are having on your system. Sometimes you may have a new symptom that has just decided to grace you with its presence and sometimes it is just quiet inside of your body. For everyone just starting this process........you will be poked, prodded and tested for everything! You have doctors ask you questions that make you blush! The doctors may even have your loved ones blushing!!!!!!! Regardless of who is blushing, the testing is tough, the days are long and you hope in the end there are answers or more knowledge for you to put in your back pack for a rainy day. What happens though when there isn't new information for you and your loved ones???? What happens when the answer to all your questions was not found???? What happens if when all of the testing is over and the only thing you are left with are more questions?????
This is one of the hardest parts about having a chronic disease and is even more prevalent in auto immune diseases. There are more than eighty autoimmune diseases that have been identified over the years. Some are more common than others and some are more treatable that others. The outcomes can be very different from one to the other but so many of them are misdiagnosed. How can that happen????? The problem is that every autoimmune disease seems to have a symptom that overlaps through out all eighty. This can be joint pain to the inability to sleep. I wish there was one blood indicator that you could test for that would tell exactly what disease it is that haunts your every waking moment but there just isn't. Life is full of questions and instead of answers most of the time all you find are more questions. I wish I could report something different but I can't.
I have had Lupus for many years and right now, according to my beautiful Lupus blood work, I am in remission. Basically my disease is sleeping. BUT if my disease is sleeping why does it still hurt so much and why doesn't all of the other physical symptoms take a nap too????? I asked my doctor this the other day and she looked at me and said she doesn't know why and that is part of the autoimmune experience. Experience, that reminds me of some roller coaster you are getting on.......YOU WILL EXPERIENCE THE RIDE OF YOUR LIFE!!!!!!! Well, that sound like more of my life than a fun ride!!! Back to the beautiful blood work for my Lupus: yes, I get that it is beautiful but it took seven years of weekly chemotherapy to get to "beautiful". It has caused bald spots and so much pain you are left gasping for air. So finally I am testing pretty and normal BUT that is on the max dose of methotrexate, chemo, and there is nothing normal about that!
Back to the question, now that the Mayo Clinic testing is coming to an end where do I go to find answers or to uncover the answers of the universe??? I don't think at this stage in our medical lives they have those for me. They have been wonderful and I have seen some of the most amazing doctors but they are not Gods and they can not see why I am so sick but my lab work is so pretty. They can not tell me if five years down the road my liver and kidneys will work but what they can give me and have given me is a sense of a partnership. I am not alone in this battle and these brilliant minds are looking out for me and everyone else who may have one of these eighty autoimmune diseases. They are looking under rocks and in silly places like amusements parks for the key that will end all suffering! I may not have signed up for this the moment I was born, they did not check to see if I was tall enough and there have been some ups and downs and I know there will be more but one thing I will remember when I close my eyes tonight.......they do not lie to you when they look at you and tell you, this will be the ride of your life!
https://www.wepay.com/donations/danica-s-doctor-delima
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