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

Happy Birthday Jacob

Happy Birthday!  We could not get a hold of you on your birthday. I think it broke Lyll's heart. I know that if I tried harder I could have got in touch with you,m I was just miserable from my surgery but that is no excuse. I did not want to over step my bounds but when I have I ever let anyone ever stop me from doing anything.  I can not believe that you are fucking twenty years old, Holy shit I kept you alive all this time.. I am having a difficult time writing all this shit because of my spine. I think something is crunching me cuz I am having difficulties reading and writing.

How are you, we miss you so much. Your sister the most . it has really been  bothering her. I just want to know if you want me to be in your life I will fight a little harder than what i have been  I love you so much dolphin boy, Gonna save this is a finish later after dad leaves. Love you and so proud of you! 

Just stuff

Just found out on of my dear friends has breast cancer. I am so heart broken. I cried so hard.  We are going to have a titity party , it should be a blast.  Having this last neck surgery really scared me. Not sure why. My daughter wrote me a letter in her journal and it nearly broke my heart when i read it in the rehab.  I am going to write back to her today. I have an incredible husband who I do not even know what I would do without him. Man the shit we have been through together sometimes i have no clue how we made it this far.

To my one and only daughter.

Hey sunshine.... You just turned twelve, officially a pre-teen, growing so fast.  I am so proud of the young women you have become. I love your unique style and your independence.  The fact that you already  do not really care what other people think about you is amazing for someone so young. I am so proud of myself for instilling this quality in you. I feel like I have done my job raising you. ... Times are about to get tough with all the hormones raging through  your body, just know that I completely understand.  I know that this is going to sound weird but I always yelled and was really loud because I never ever wanted you to cower in the face of adversity. Never back down, always stand up for the people who are unable to do it themselves. The joy and reward you will get from this is unfathomable. You can do anything you put your mind too. I never want you to have to be stuck in a relationship that you can't get out of.
 High school is going to suck ass.  Don't get involved with anyone click, just bounce around to all of them. You will have one or two teachers that will impact your life greatly, keep in touch with them and I guarantee it will be worth it.
Buggie, you are a mini me ,it is going to be your job to hold this family together. Every family needs a matriarch and it is you. Keep your older brothers in line and watch over Jacob he is going to need you.
 I want you to know that you were created out of love, the firework kind. Butterflies in your belly kind of love. I still have them for dad after all these years. I do not ever plan on leaving your dad but in case it happens I want you to know that.
The light shining from your inner self lights up a room every time you walk in.  You have brought me nothing but joy and so many laughs. Everything that is good in dad and I has been passed down to you.
 I have to admit I am a little scared because I do not want you to distance yourself from us now that you are entering your teenage years. It scares the fuck out of me.  I am so sorry that I have been sick most of your whole life and I am sorry that I could not always bring you to the places that you needed to go.  I think that me being sick has shown you how to be compassionate, caring and to always take care of people when they are at there worse.   I can't wait to continue to watch you grow. I love you buggie!!!!! Love always Mom

To my son.

Dear Jay,

There is so much I want to say, I am not even sure where to start.I believe  from the beginning is always good place. I can still remember the first time I met you, 6 years old with a big incredible smile.  I was so nervous because I loved your dad so much and I wanted you to love me too.  I know it was hard for you because now you had to share dad with me and your new brother. A brother who was an only child as well and we became an instant  family. Not only did you have to share your dad but nana and all the aunties too.  I never wanted to be a replacement for your mom just another person that you loved.  It was so difficult for me the first few years because most everything that came out of your mouth was something that your mother said. I  know that in her strange way she loved you but she always used you like a pawn.  Always pitting you against us.  Jay, I knew that your life living with her was so hard. I knew because I was once you.  The first time I went with your father to court for you I could not say a word because I was not married to him yet. Dad did not want to bring up the bad shit that he knew because he did not want to hurt you.  So we sucked it up and took as much as we could, as much as your mother would allow.   It broke my heart every time we had to send you back home because I knew you were not safe. How mad I was that I could not protect you like I could your brother and sister.  There is so much that you will never understand until you have your own children, the feeling of helplessness.  I just had to sit back and watch and wait. 5 years is a long time to wait. In that time I watched you grow to resent your brother and sister and myself. It was okay because you were just a kid and did not know any better.  Just know that the door to our house was always open for you and she just would not let you come. We always wanted you with us.  I got close to your mom because I wanted to keep and eye on you, it was the hardest thing I have ever done.  It just confirmed everything that I already knew.  Finally we got you , the summer before 7th grade.  I was so relived but I had my work cut out for me.  Jay you were on so many medications and you were failing school.. We did it though, together we got your grades up and I took you off all of your medicines. One of the first things that I really noticed was your resentment towards women who had authority of any kind that were involved in your life. Then your anger, you were so angry, just like me at that age. Rage, so much of it.  In my my mind I did not want you to travel down the road that I had or that your mother had. What a horrible road we both have traveled. I did everything in my power to keep you safe. I know that you think  me making you do laundry, vacuum and other household chores was a punishment. It wasn't at all.  It was to give you stability, responsibility and a sense of accomplishment.  It was also to keep you home, I was so afraid that your mother was going to steal you back or that you were going to follow in her foot prints...........

SIckness

Having a disease that no one really knows about is really hard. The people who are closest to me in my life know what is really going on but others only see what they want to see. They see the pretty image that I have created for my book, my life.  I really never let anyone get to deep into my book just those that I think are worthy.  I pick and choose who I really want to know because it is a lot of explaining to do and I do not want to waste what little time I have left.  I write on this blog that no one will probably read because I do not want to burden anyone about my worries.  I try always to put on a pretty smile and to make those around me laugh. What is the sense of making other people miserable, I just choose to suffer alone.
This disease that I have called DISH has caused all kind of other problems in my body. The one I think that really bothers me the most is my bladder. It stopped working about 10 years ago. Which really sucks because who wants to smell someone reaking of urine.  I was getting treatments for it but then I fell down twice and I hurt myself.  I ended up going to the hospital where i contracted C-diff and now I have lost my voice due to some other illness.   I always wonder why my husband is still with me. He is not perfect but I think he is pretty close to perfection. I often feel like I do not deserve him and that maybe he should divorce me and find someone else.  even if that did happen I do not think that any other women could love him the way I do. I love him with eveything that I am.  My husband has stood by my side through all of my operations, which have been to many.  He takes care of me when I am sick and always makes me feel loved. I do not think that I could have gone thru what I have without him. I know that I am a very strong women, I have proved this to myself many many times over the last 37 years, but he makes me want to heal faster and to just be a better person.  My children play a big part in my road to recoveries every time.They have really only know a sick mom. Not a whole healthy mom. I do not think that it is a bad think because it has made them kind, caring and compassionate.  It has shown them how to sacrifice with out being selfish and that even on the rockbottom /bedrock days things will get brighter. I think it has taught them mind over matter.

Dear Dad,

Dear Dad,
  Yesterday at 6:08 p.m. I sat with your father, my grandfather and held his hand while he passed on to another life. I am pretty honored to have been there with him and your sister , my aunt when passed on peacefully.  After you left all kinds of thought went running through my head.  It's been along time dad. Not really sure why we do not talk and why you do not know the strong daughter you have or the incredible grandchildren.  I get it raising kids is so hard. Probably the hardest thing that any person will ever do. The greatest accomplishment in life.  Things do not always go as planned , we make mistakes, we fuck up. That is why there is this thing called forgiveness and second chances. I do not and will never regret anything that has happened in my life. It has made me the women that I have become today and I am pretty fucking proud of her. You might want to know what makes up this women, how did she become the person she is? Well I had a great set of parents when I was younger. You guys were so not perfect but relationship and child manuals have yet to be made, so you struggle along.  Dad, if nothing else, if you never read this I just want you to know that I remember everything you ever taught me. The love for nature, your passion for sports, hardworking ethic, never to give up just keep on trucking.  I think of when you first taught me how to play baseball, I use to break dance in the outfield. I couldn't even hit the ball off the tee.  I can still here you yelling at me to pay attention , hands on your knees.   Did you know that if I had stayed in high school I would have had a full ride to college for softball.  I pitched the fasted, threw the hardest and hit the longest. All because of you dad.   I remember following you in the woods, like a little minion. Learning every tree, every leave, all the nuts. What to eat and what was poisonous . How to make a shelter out of nature and keep it rain tight. Teaching me how to track, stay down wind of your prey.  Because of you teaching me how not to get lost in the woods , I have never been lost in life. I can always find my way back to the path.  I know that things were tough when your daughters started growing up. I know that you secretly  wished we were boys and I am sorry we are not.   I can completely understand how and why my parents got divorced.  Relationships are hard work, you need lots of communication. people need to be a united front when raising children. You learn from ones parents, they were your example. Your parents fucked up too. Each generation has to break the cycle ,take the good from their elders and add their own.   My sisters and I were just kids, we looked to you for guidance and understanding. It was not our fault that mom and you did not make it. One makes their own decisions decides ones own fate.   For along time I blamed myself for your problems and your faults. I had to justify why all of the sudden I was your little minion and then when things got tough you guys just gave up.  I do not blame myself anymore for I was just a child.  I forgave you both a long time ago. I gave up my anger and hatred.  Do you know that it has been over 20 years since I have had my dad in my life. That is a long time but it is never too late.   I wish I knew why you don't love me anymore , deep inside I am still your little girl.  It was so hard to see you and not know what went wrong. Why you talk to my younger sisters but not me.  I have no clue how to fix it. I have reached out several times and never had anything back.   I can't reach out anymore, I am tired and have an illness that is just tearing me up inside. I have to focus my attention on my family because who knows how long I am destined for this earth.  If nothing else Dad, if we never have a relationship again I want you to know how much I love you.  I remember everything.

With all my love,
Daughter.