Book Cover

I was taught as a kid to never judge a book by its cover. My mom would tell me to try a book despite the picture on the front. This eventually was passed on to people. I was told not to judge an individual based on what is on the outside but look inside and see the true person. Choose your friends this way and you can not go wrong. Now as an adult Tim has been teaching me to pick out wine. I am horrible at this simple task! I would go into the wine isle and pick the coolest label. I brought it back to Tim and he would ask me why I chose that one and I told him I loved the label!!!!! Well, after many horrible bottles of wine I am slowly learning through trial and error, labels mean nothing when it comes to the taste of the wine! It amazes me that this basic concept has followed me over the years and has tested me and my ability to choose what is best for myself.

The concept of choosing a book based on a cover has been testing me lately. Most of you know that I have been going through testing at the Mayo Clinic over the last three months. I have had veins blown because I have been poked toooooooo much (we start with the hand now, yuck)!!!!! I have had glamour shots taken of almost everything and I have even been mentally evaluated which actually was kind of fun! I know more tests are on the horizon but I know I am receiving some of the best care in the United States and I must be patient for answers. They see a need for the tests and at times you just grip the side of the bed and breath in and out. The end is near.

Over the last few weeks the results have started trickling in and based on the blood work my Lupus is in remission. It seems the chemo shots are working and have stabilized the Lupus end of things. I am happy and concerned at the same time. My family is excited and rejoices in the joy of my remission. Why am I not jumping for joy??????? Well, the blood work is beautiful but I am still sick. I still have chronic pain, joints in my hands are swollen and the respiratory infections and sinus infections continue to reak havoc on my body and my soul but my blood work shows no active disease. 

This is where the confusion surfaces for me. How can I feel so bad on the outside but look good on the inside? My rheumatologist is happy and really has stopped listening to the issues I continue to have because my blood works shows no active disease right now. It is so hard. I want doctors to not judge me based on the inside right now. I need them to look at me and hear me and understand it is not as easy as just blood work. I know what I feel and I know something is not right. I need them to look past the inside and truly look at me on the outside. I need to be consider as a whole and this means putting together EVERYTHING! Sometimes I think doctors base things on tests and look past the patient and the symptoms they are having. As a patient this is frustrating and heart breaking. You just want to feel better and you want to know what is wrong. You want to live a normal life and carry on. This is impossible when the pain is toooooooooo much!

I am person and I have the ability to express myself and tell you when I like something or dislike something and I have the ability to feel what I am feeling at this moment and express it. There is a reason the body feels pain and we need to find that reason, it is there, we just have to keep looking deeper and deeper. Right now they say the best place for me is in bed and they treat the pain as it comes and goes with pain medication. I hate this! I want to enjoy my day and not sleep half of it away because of the medicine. I need to really step up and push for answers. I am my own advocate and may have to shout it out but I will find someone to listen to me.

https://www.wepay.com/donations/danica-s-doctor-delima