The story of my life after turning 29 and becoming ill with multiple rare diseases and complications from the treatments which were supposed to cure me. I hope that through this blog you will find inspiration, education, and maybe even something to help yourself even if you aren't exactly in my shoes. Life is never boring and you have to learn to adapt to just about any situation, symptom and side effects both scary and funny…yes, I have found humor in all this…I hope you enjoy the journey.
Wednesday, December 31, 2008
Remembering You
The snowflakes fall as they did the day we first met 15 years ago. Softly kissing the ground and blowing on the wind. It’s like living in a snow globe except something is missing. That night you walked in from the storm, so fierce, you claimed me as your mother and I you as my best friend. You were so cold from the snow but determined in your actions, you sat on my lap as if you always had and answered my childhood dreams of owning you; of owning a black cat who would be my best friend.
Little did I know how close we would become and how true our friendship would be and how much you would affect my life. I sit back now wondering if you know how much I loved you and how I ache for you now. If you know how great the bond between us would be and the hole it has left me with. My heart aches with literal pain as I grieve for your passing. My beautiful child can you please forgive me and remember how much I loved you as we napped and cared for each other through all of the horrible and wonderful times we had?
I miss you purring sounds as I scratch you fur and as you beg for treats of tuna and milk. Your stealth actions always sneaking a sip of my nightly milk when I was not looking. The feel of your thick winter coat against my skin often heating me as well as you despite the blankets or the temperature in the room, so soft and loving. I miss how you curled up on my chest so our heartbeats would sound as one. How you knew where I hurt; and laid there like a Band-Aid trying to sooth my pains and illness as I lay there helpless and alone. I can’t help remembering you, your every breathe and every moment.
I remember your last breathes as if they were my own. Everyone pains me as I think of the glassy look in your eyes begging for care and love. I told you everything as we wandered the house in tears and laughter. But somehow all I can remember is the last breath you took because of me. To ease your pain but only begin the agony for me as you departed into the spiritual world. Somehow I still feel like your murderer though I know you would lie dead today if it were not for me helping you to have some dignity. Some say you were only a pet but honestly you were my best friend for the past fifteen years, never judging and only loving. And yet it was me who had to decide if that deadly needle should help you along.
What if I was wrong and you would be here today? I have nightmares now in my short attempts of sleep. I can’t seem to wonder if I did right by you as I helped end your life and move on to the next. Every breath I take hurts as memories flood my thoughts. If you can forgive me for our last few moments when I held your hand and had to help you go. Everyday I feel so much guilt about the way things ended. If only I knew that you felt the same and were sad to go and leave me too.
I can’t stop remembering you and wonder how to say good-bye to you my best friend. Please remember that I would only do what is best for you and that I am so alone without you by my side. How will I fight my own battle against illness and death without you? I feel lost without you. A piece of my heart missing; but I can’t help to remember you as the snow falls and I recall the day you walked into my life and changed it and me forever.
I am here remembering you but are you remembering me? I love you my best friend, my baby kitten, my child. Know I just wanted the best for you out of my tremendous love.
Seriously this question is a bit ridiculous at my age since I am going to be 35 in a few days, seven days to be exact.But, I find myself faced with this question once again.I am no longer five years old.What spurs this random line of thought?A collision of emotions and a television commercial talking about kids growing up and drinking milk; that’s what.Who would think something so mundane would prompt me to begin looking at my life again and wondering who I am and what I want to be when I grow up?
The question isn’t really that crazy if you look at my situation.At 29 I found out I had a tumor causing a rare disease called Cushing’s.Talk about a horrible experience.I gained an enormous amount of weight which typically would not be detrimental to one’s thinking but I was training for a triathlon. I was not prepared to not be able to walk around the block and to find that despite a diet of “nothing” I was going to gain almost 100 pounds.I had surgery that was supposed to cure me of this random one-in-a-million disease but low and behold I remain sick five years later and am looking at a few other options, all rare diseases.
Cushing’s nearly destroyed me physically and emotionally until I found a way to let myself think it was only making me a better, stronger person.Honestly, it has in the sense of caring for others, valuing what I have and learning to let go of what I do not but I cannot help falling back into a random day of what could have been.Oddly, I help many others deal with their rare or not so rare diseases and find it quite rewarding except when you get one of those people who just will not let anyone help them, including themselves.It is kind of like being an alcoholic, you need to want to get better or redefine yourself; so some people just cannot be helped.During these random days every year or two I wonder what the hell I am going to do after all this is over and when exactly that will be.Having some of your prime years taken away as well as some options for your future is just not something easy for someone to deal with who was successful and “had it all.”If I was still in my former career I would be worth more than a million dollars right now but low and behold I keep looking at my bank account to see if my monthly disability checks have come in so that I can save some money for my next surgery or a shopping spree in order to keep my life going.
I had to fight for three plus years to get my disability and just recently got it. Now that I have it, I find it a good way to supplement my stay at home activities.Online shopping to update my wardrobe is something I am redoing to make my new body look better than it really does since the changes have been so drastic (my mind is still trying to catch up with the changes as it does double takes when I pass a mirror).I often feel the need to shower people who have stood by me all this time with gifts; not the best use of my money but it makes me feel less guilty about having to borrow money in the past and my major mood swings caused by my disease(s).I bought an Xbox 360 to give me a toy to play with and a Nintendo DS for the long doctor visits which usually are a lot of waiting.Also, I have supplemented my book addiction because going out and being around people still makes me very sick.So I can only imagine what a library book crawling with germs would do for me.Don’t worry, I donate them to charity after so it is not all pure pleasure and a waste of funds.Besides, I get to play with people online and chat on the computer.Oddly I find writing a good outlet and a way to let others understand why I do the things I do now since I have changed so much, and besides people really should be prepared for a life-altering illness or at least understand it as someone they know will probably go through one.Writing is just a hobby but who knows maybe I should and will to be a writer when I grow up.I told everyone in high school I was going to be the editor of The New York Times. Not sure that I will aspire to at this age but I am not willing to give up while I look for what to do when I grow up.Anyway, people need to understand that this is not a “poor me” story when it is really about empowerment.Let’s face it, learning to deal with the shit life dishes out is always a lesson we can benefit from.Other than that, I am also trying to save for a house, pending of course the ability of getting someone to offer a mortgage to someone who lives on disability with no real time frame.
Many people think I am such a strong and brave person so rarely do I find myself able to break down and allow myself to feel the misery these diseases have brought me.Hey, two rare diseases is wonderment to the medical community and when people say how strange that is, I remind them I am just a very unique person.Yes, I am better. I am happy, and I am alive and living to fight another day.I should be proud of this attitude.I still want to fight this mysterious opponent but it gets tiring and I find myself needing to melt into a pile of emotions of “what would have been” had I never gotten ill or something along those lines. - Especially when I think about when I am going to get better and what if I don’t. - What mark I’ll leave this earth with as I am not a believer we live our lives for nothing.The universe gave us a life for a purpose even if it is just to make your mother smile or win a Nobel Prize. See, I do have a lot of options and so does everyone else; it is just a matter of how or if we take hold of them.Ha, this is the first writing I have done in months but it feels right.Maybe I should pay more attention to those TV commercials for inspiration.
Not knowing what lies ahead is a very scary experience and even more so for someone who had a fabulous career and pockets full of money (a lot of debt living that life but it still looked as though I had it all).It is funny; I have more money in the bank now with less debt than when I was working full time.I am not allowed to work now and it frustrates me but I also know I cannot possibly do the long hours and not lay back in my couch even as I write.Heck, I have to shop online because the mall is to stressful to my body but at least I found a solution and now look like I want to live when I walk out the door instead of like a bag of rags the maid threw out.I guess once and a while we just need to let it all out, our tears and fears for someone in my position, or we will end up going crazy.People think it is a sign of depression but since it only happens once a year I am going to peg it up to fighting so hard that the exhaustion just demands I take an emotional break to put life in perspective and think about what it is I want outside of getting better.
This year I married the most wonderful man and I know one thing I want is to make him the happiest I can.I guess he would not have married me if he thought I was going to be the “give up” type of sick person or life obstacle defeatist.Let’s face it my condition is very similar to other major life changes and we all need to learn to deal with them.It is just a matter of getting people to see them in the same light and that they can take charge of the outcome; even if I am sick forever I still can make a difference and change myself and hopefully help others at the same time.
As for 2009 I am not sure what comes other than continuing the good fight and trying to maintain the person I am and that is loved by many…at least I think I am.That is the other thing, being in this condition makes you wonder what people think of you and do they still think you are the person you were before all this.Frankly, I hope that they think I am a better person than I was before all this.I still want to make people proud of me and be proud of what I do with my life even if it isn’t perfect.
So the question still remains…what do I want to be when I grow up?I think I already am that person but now I need to find the answer to - what do I want to DO when I grow up?That is the puzzle I am still trying to work out and maybe you have some ideas.I am open for suggestions.One thing I plan to do, no matter what, is to start a non-profit organization to help people in health positions like me facing medical debt larger than the Empire State building and trying to live a good life with a positive attitude.Even if we just help them with the food bill so they can have a healthy meal would make me proud.But right now I need to wait on that since I don’t have the energy to do it all myself…in the meantime, I guess I will keep watching commercials for inspiration and answers to some of life’s questions. I’ll keep making jewelry (or actually do it instead of just design it), maybe start painting again and work on writing to figure things out since it seems to help me gain some clarity.
As far as what I will do when I grow up, I am still waiting for a sign.In the meantime, I will keep working on fighting to gain my health and energy back to make some of these dreams come true.
My real name means "Sweet Joy." I have no idea why since I was a month late and almost 10 pounds - practically killing my mother. Despite this she still named me "Sweet Joy." I'd like to think that I am appropriately named now that I have accepted the oddity of a girl named Dulcie.