Just Me

I am having a hard time dealing. As I am sure my husband and kids are too.  I have a disease called DISH (diffuse idiopathic skeletal hyperostosis) . First off < I do not want the" Get well's , Hope you feel better or the pity.  That is not the purpose of this story. .   I have suffered with chronic pain for about 12 years. It makes you crazy, insane even. One has to learn different coping mechanisms( lots of them). Me, I read, I like to make people laugh, I like to pretend that I am something that I am not, Like a character in a book. I always put on a fake smile and try to make others feel good about themselves .
So DISH is incurable.
Just some facts~ Diffuse idiopathic skeletal hyperostosis (DISH) is considered a form of degenerative arthritis or osteoarthritis. However, DISH is characterized by unique, flowing calcification along the sides of the contiguous vertebrae of the spine. And, very unlike typical degenerative arthritis, it's also commonly associated with inflammation (tendinitis) and calcification of tendons at their attachments points to bone. This can lead to the formation of bone spurs, such as heel spurs. In fact, heel spurs are common among 
There is no prevention of DISH. 

Diffuse idiopathic skeletal hyperostosis (DISH) is uncommon in patients younger than 50 years and is extremely rare in patients younger than 40 years.


Basically I have it thru my spine which has had to have been operated on a bout 9 times so far. I broke my back about 11 years ago and the doctors think that is what kicked in this disease at an early age. It actually made me paralyzed at time. It was so scary because I just had lylly and I am such a physically strong girl.  I have a very bad case of DISH and it is now in my ligaments too. 
So along with this DISH I have various other medical problems that aroused from all the operations I have had.  My bladder no longer works, Most all the muscles in my back are hard as rocks and they spasm constantly. You know the Charlie horse you get in your calf, picture that but my whole back all the time.  MY skin hurts to touch in lots of places, it is on fire.  Up until they put my new rib in I could not hug my kids or my husband. It was so excruciatingly painful It made me want to throw up.   I have Dish in my knees and hips. It is very painful to walk sometimes and to get up from a sitting position.  At night if my legs fall open to one side they get paralyzed that way until my husband moves them to get them to go back, which is fucking excruciating. 


 I am writing today because I am having problems breathing. My rib cage does not expand like normal people and it hurts so bad to take deep breaths. All my muscles are in spasm mode. 
So I am just venting.  Oh yeah and I can't do any of the stuff that I love to do anymore. uuuggggg