Well I know its been a while since I have made a new post, but there have been a lot of stressful things going on. Some of these issues I cannot post about right now, but some I can. Right now I am only going to post about one thing out of so so many. Tomorrow I will post about another very important one, that I think those with Tarlov Cysts should really worry about, but today I am only going to post about this one thing. Take note that CES makes this one thing like a grain of sand on the beach, as there are many many things that make up CES.
One of the great things in my life right now is that I am going to have a new grand daughter, and so far things are going good on that front............... well mostly.
The part that does not fit into that category is the wonderful baby shower I had for my daughter. You see my First grand daughter was born almost 15 weeks early. So when that happened, as every mother I had planned to throw my Daughter the best baby shower any mother could dream of, the baby shower of my daughters dreams. But because of my grand babies early arrival, my daughter never had her dream baby shower. Instead she spent day in and day out at the hospital with her beautiful daughter who was fighting for her life every day, for 99 days to be exact. I had watched my daughter grow from my little girl into the strong woman she is today and I could not be more proud of who she has become.
So for this new grand baby that is on the way, I planned her baby shower and wanted to fulfill that lost dream. You see she is my only child, and as a parent I wanted to make her dreams come true, Its all I have ever wanted from the day she was born. I reserved this beautiful location, with beautiful gardens and ocean views. I made sure they had delicious food, and I special ordered a wonderful cake. I invited all of her close family and friends to join in her celebration. Every thing was perfect down to the balloons and party favors.
Sounds wonderful right? And it should have been. But you can never really predict when CES will rear its ugly head. It just so happens that particular day was to be one of those days. I woke in the morning, with a very high level of pain, so I took my pain meds to control it and continued to shower and dress and was so excited to fulfill her dream shower as I prepared to get ready and go. I was all set, I had showered, done my hair, put on my makeup, I was excited and ready.
Right before I was to leave my house all hell broke lose. I was sitting there one moment excited for the day and the dream I was going to fulfill. In the blink of an eye I and my house was covered in feces and the nerve pain went out of control. It continued on and I lost control. Not only did I lose control, but my body defied me as well as it lost control. Sometimes when this happens it will stop once it has happened. Then I proceed to clean up the mess and move on, not letting it ruin my life. However this day, for some reason it did not stop, nerve spasm after nerve spasm it continued on. I started to panic. What was I to do. It was about 10 minutes to the party and here I was in severe pain, covered in feces, as I am sure guests were beginning to arrive at the event.
Thankfully for my wonderful loving husband who I could not be more blessed to be married too, he cleaned up the mess I had left all over from the living room to the bathroom, and took my place, where I should have and wanted to be. He left the house and went to meet the guests. I am not sure what he told them without embarrassing me or himself, for I was fully embarrassed and humiliated beyond comprehension. As he was there at the shower getting it started I was home in severe pain from nerves and spasms. See the big problem when this happens for me is that I have no feeling and no control, as every thing is numb in that area, so I cannot feel when everything evacuates my system. And believe me for some reason on this day, this day that was to be so special was worse then most. I dont know how there was so much that could evacuate from one body, but so it was. I was stuck on the toilet for a good hour or more. It was excruciating and painful. It got so bad that it got to the point where blood was running out because apparently it became so inflamed from the spasms it caused me to bleed.
So there I was stuck on the toilet, in pain and evacuating blood and feces. I eventually was able to finally bend over far enough from the toilet to run a hot, very hot bath after about an hour. Once the bath was run I got in there and layed down in the water. I took many wash clothes and continiously soaked them with the hot water, covering all the areas that had pain. It took well over an hour with that process to finally get the pain to subside, along with more pain medications as well as muscle relaxers. Once I was finally able to get it under control, I again began to prepare myself to go to the shower and hide my frustration, anger and humiliation from all that attended. I was not able to dress in that cute outfit I had planned on wearing, as it was now in the washing machine, getting rid of all the waste it had been covered in. Instead I wore the most comfortable clothing that would not put any stress in my mid to lower section of my body, and that would accompany a diaper without being to obvious.
I eventually made it to the shower, and it was as beautiful as I had imagined it for my daughter, and I know she loved it and I had made her dream come true. That was most important to me as I love her more then this world and would do anything to make her happy, which includes going through an ordeal like that and greeting and talking to the guests as though every thing was fine. I have learned since this horrible ordeal started in January of 2009 to become a great actress. In the end even though I had to go through all the pain and all the frustration, to see my daughters smile and her tell me mom it was every thing I dreamed it to be was worth it, but then again I would also die for her.
The cost of this to me, and I dont mean money, was being mentally and physically exhausted for days. Because no matter what I went through that day to get there, There are certain things you have to fight through to stay strong. It does not mean that I can live a normal life or that I can live with the damage done to me, believe me I am not ok with it, it means I make myself appear to be normal in front of others as to not feel the humiliation I already have to live with inside myself.
Again this is just one day. I have to warn anyone that has a tarlov cyst, this could be you if you choose to have surgery, you can have days like this and you can have more days like this then you do not. I know, that is my life. I have to live my life one day at a time and the above experience is what could happen if you try to plan something wonderful in your life in advance. Your plan can be changed in seconds. At least when I had the tarlov cyst I knew what to expect, that I would get some siatic type pain in my left thigh, that my left big toe would be numb. However this CES? You cannot plan, you cannot hope, you cannot dream. You have to do what CES says you can do.
Obviously it is Friday almost a week later since this incidence happened, but that is how long it took for me to mentally be able to write it, you see first I had to deal with it inside myself. You see first I had to process it emotionally before I could actually admit this is my life.
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