Blindsided

I loved and hated dodge ball as a kid. I loved it when I was picked for the team but hated it when I had to sit out because no one chose me and that happened more often than not. When I was able to play the most embarrassing way to be hit by that red bouncy ball was in the face! Oh boy, that happened to me a lot! The gym bell would ring and we were headed back to class. Everyone was giggling about the fun they had and there I was smiling big with the side of my face red and swollen! All I could think about was that I had been picked! I may have been blindsided but I was part of the team this time and that was all I could ask for!!!!!!!

I despise the word blindsided. I hate the feeling I get from it and it never means something good in my life. I am blindsided by another car, how that doctor blindsided me with what he found and the worst..........where did this enormous bill come from!!!!!!!! It makes my stomach turn and leaves me fearing for my life......not literally  just figuratively! I just shiver when I think of the meaning of that word to and my life situations.

Over the last few years you could say that I was blindsided around every corner that I turned. There was that big red bouncy ball and it would just smack me in my face and if fate didn't think I felt it enough, oh it would throw it again so I could have to internal rosy cheeks. Thanks fate!!!!!! We have lost jobs, had to take jobs that we hated, health has declined and we have had to choose separation so that maybe that big red ball would not be around every corner in the future! Hey, one can hope and believe me that is one thing we do not lack in my family.....hope. 

So another ball has hit me in both cheeks and to make it worse, in the front and the back of the head! Only if you could physically see this I think I would have a Youtube hit on my hands! I am not walking away from this situation just happy I was picked......I am walking away and wondering what to do. 

It involves health insurance and the high price we must all seem to pay when you are on your own. You see, when I lost my job with the State of Arizona I chose to continue my coverage with COBRA. I know this is very familiar for a lot of you, especially those of you who have lost their jobs. The expense is so big but in my case I have to have it and finding a plan a little less expensive is not an option for me. I have been marked as uninsurable by the insurance companies! I have to look for coins hidden in funny places and count every penny because of insurance. I just hate this. I even applied for state assistance when it comes to health  insurance BUT I make toooooooo much money on short term disability. WHAT?!?!?!?!?! How is it that others seem to qualify but I can't????? It is that big red ball just bouncing in in the corner taunting me waiting to be flung in my direction! I swear, if you close your eyes you all can hear it.....it has that distinctive rubber ball bounce!!!!!!

What do I do next???? I realize the cost of insurance is not the worst thing in this world and I am thankful for the care I am able to receive and the costs of my medicine. I have hope it will get better, we all have to have hope during tough times. We all have to lean on our family and loved ones. I will just get back up and look at that big red ball in the eye and stick my tongue out at it! Hey, that worked when I was a kid! Maybe that is why I wasn't picked all the time and here I thought it was my bad aim!

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Where were you?

Today is September 11, 2012. To others outside of the United States it is a normal and uneventful day. To us it will always resonate fear and sadness because today eleven years ago terrorist came into our country and used our own planes to kill so many of us. I can not even begin to imagine the fear in the eyes of the passengers on the planes and those working diligently at their desks in the Twin Towers and the Pentagon. A moment in time that changed our history and our lives. How would we move on and how we would continue as a nation? Well, that was answered very shortly after everything happened. Strangers became heroes our New York fire department and police department ran into buildings when so many were trying to run out. They reassured everyone that everything was going to be fine. The courage it took to do what they did that day is a true representation of who we were as a country and how we would respond. 

I can remember very clearly where I was that day. It was an overcast day in Kentucky and I was a preschool teacher. In the kitchen they had turned on two small televisions and all of us teachers would watch the children while one or two of us ran to watch what was taking place on the television. I was watching when the first tower went down and I turned away and just wanted to be with the little ones in my classroom. I looked at them playing, these four years old children had no idea that life had changed forever and they will never remember what it was like living before September 11, 2001. Very soon after the second tower fell the parents of the children started coming in to grab their kids. Some were crying and others were angry. All I remember was by early snack all the kids were gone for that day and at home their parents held on to them tight as they prayed to wake up tomorrow and see that this was all a bad dream.

Somewhere else a different feeling was being felt. My best friend was giving birth in an Oklahoma hospital. She was watching the towers engulfed in flames in the hospital room and she was trying to push out her first child. I remember her telling me that she watched the news and wondered how could she bring an innocent child into a world like this. Soon after the towers fell she was whisked away and delivered Julian Boyd Walker by cesarean on September 11, 2001. Today Julian is celebrating his eleventh birthday and he is an amazing child. He loves to laugh and is an amazing big brother to his sister Noellia. They were a family that was not touched by tragedy on this day but by joy. 

Another angelic child was born on September 11, 2001. Christina Taylor Greene was brought into this world on such a tragic day. In the book about her life her mother wrote she was feeding her newborn as the first tower was hit. She also watched the tragedy of that day unfold from a hospital room. It was a day full of sorrow but how could you be sad when a new life was brought into the world as many wonderful lives left. As you may know Christina Taylor Greene was the youngest victim of the massacre at the Safeway store in Tucson Arizona where Gabriella Giffords was meeting with her community. Her mom and dad state in their book that her life was book ended by two horrible acts of violence. So today I can imagine they celebrate her memory as well as grieve for their loss as so many others do.

We were all touched on this day eleven years ago and for myself, I know that I will stop and remember what unfolded that day and remember how our world changed forever. As we mourn for those lost we also must remember that there was joy found for some on this day. Babies were born and the circle of life began all over. It is very easy to get swept up in the tears today and I myself have shed a few but I also focus and think of the families singing happy birthday to their eleven year old children. Now comes the hard task for those parents, they must explain to them why their birthday is so different than others. They are at that age of understanding and it is time to pass on the heroic and sad story of loss and triumph we felt as a nation eleven years ago today. 

        
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Me

I am a person not a patient. I deserve to be treated with kindness and respect in any situation I may find myself in. I have the right to speak up and have my words heard. I want to be loved deeply and truly. I am comfortable in my own skin. I may gain weight and loose weight but the women inside is always the same. I may have scars on the outside and move slower than most women at my age but I am free and running inside of my heart. I have so much to give but will not allow someone to steal all of that away. I am not defined by what I do for a living or by which disease I have. I am defined by the love I give, the beauty I see in this world and the respect I have for myself. I am in control of my own destiny and I can create the life I want live and deserve to have. I can choose the situations I put myself in and I can choose to walk away. No one can tell me what is best for me, only I know that. I am an educated women who has chosen to devote my time to myself and my healing. This does not make me less of a person. I still can give as much as I receive. I am thankful for everyday I have left in this life and I choose to live those days to the fullest. I choose not to cry when bad news comes knocking at my door, instead I grow taller inside and fight the battle that needs to be fought with fearlessness and determination. I am not less of a person if I ask for help. I am not weak if I need to lean on the shoulder of a friend. I am strong for knowing when I need to be surrounded by love. I am not afraid of what the future holds and I look at it with excitement and opportunity. I have Lupus but Lupus does not have me. 

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Two Men in a Hospital Room

I wanted to share this story with all of you. I read it many years ago and it touched my heart. I always think of this story when I am laying in bed looking out my window. Always remember that gentle acts of kindness can change two lives.......the life of the individual that is giving and the life of the individual who is receiving. You never no what end you will be on so give wholeheartedly to your loved ones who surround you.

Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room’s only window. The other man had to spend all his time flat on his back. The men talked for hours on end.

They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation.

Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and color of the world outside. The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene. One warm afternoon, the man by the window described a parade passing by. Although the other man could not hear the band - he could see it in his mind’s eye as the gentleman by the window portrayed it with descriptive words.

Days, weeks and months passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.

As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.

Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside. He strained to slowly turn to look out the window besides the bed. It faced a blank wall. The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, “Perhaps he just wanted to encourage you.”

Remember: There is tremendous happiness in making others happy, despite our own situations.

Shared grief is half the sorrow, but happiness when shared, is doubled.

Dancing in the Rain

I grew up loving the weather! I tell myself if I could go back and do it all again I would become a meteorologist. I loved the first snow of every year. I would open up my bedroom window and just listen..........I could hear the peacefulness of every snowflake hitting the ground. It was silent but I could truly hear the beauty. I loved the first storms of the summer! You would look at the trees and the leaves would flip around and that is how I knew a storm was a brewin! The thunder, lightning and the pouring rain hitting the roof! It was the best time to curl up on the couch with a good book! The fall, it wasn't so much as a storm but a breeze that started out a little cooler than the ones in the summer. As the days moved on and got shorter and shorter the breeze would continue to get cooler and cooler. You would see gradual changes but eventually fall was everywhere in shades of yellows, reds and golds........and the smells! When I close my eyes I can still smell the leaves on the ground and that smell was intertwined with the smell of a bonfire. Oh, that was my favorite time of the year and one I still miss the most!

Here in the desert there is really no drastic change. The four seasons do not exist and spring just gets hotter every year, summer tends to last until Thanksgiving and winter, well, winter has been even dryer than normal over the past few years. Everything is blur. I remember my first Christmas in the desert, I could not find my Christmas spirit and those of you who know me know that Christmas could start in October if Tim would let me! That first year was tough. It was warm enough to swim and Christmas lights don't belong on palm trees and how did they get them on the cactus without pricking themselves over and over!?!?!?!?! Some houses out her are so big that some even hire actual crews to hang up their lights! What happened to everyone bundling up and telling mom or dad which way to go with those lights and if the bow was in the center of the wreath????? The good thing is that Tim's family hangs their own lights and I am the first one up the day after Thanksgiving hanging lights with his dad!!!!! And yes, I prick myself on the cactus! 

All these changes are what so many of us look forward to during this time of the year but one thing they forgot to tell me is that these small changes in the weather would hurt. When the temperature finally does start too cool down and rain moves in the pain level for me increases. The rain means staying in bed and listening to it while managing the pain the best I can. As I have mentioned earlier in my blog, sun hurts me just as much! Where is the happy medium here and how do I mark these moments with joy and not a pain pill????

Well, if I had the answer I would not be writing about it today. BUT I do have an idea and I am following through with it this week. The one doctor I do not have on my team is a chronic pain specialist. How can I not have one of those????? They must not have been one of the choices in the salad bar of doctors the day I went through! I have researched and chosen a teaching facility. I am all about the next generation of doctors understanding people like me! I am hoping that while the Rheumatologist treats the Lupus and the Pulmologist treats my lungs and the ENT treats my sinuses and the Neurologist treats my noggin and on and on and on......the chronic pain doctor can help me manage the intense pain of everyday life. I do not expect him to be a miracle worker just someone who can make me a little more comfy.

I decided tonight as I was walking down the steps that I would measure how well the new doctor was doing by the pain I felt doing such a small task. I want to be able to walk down the steps and have no pain. Just the steps. I don't need to run a marathon at this point or even hike up my favorite mountains.......just walking down the steps is all I am asking for. I don't think that is toooooooo much!!!!!!!

Today was a tough day and the weather changed drastically and rained off and on all day. I knew this even before walking out the front door. The pain had settled in my joints and it has remained there all day. I have taken hot showers and used the heating pad and nothing is bringing the moisture out of the smallest cracks in my joints. Today I now see the chronic pain doctor is not a choice anymore but a necessity! It is time to take control of the one thing that I feel the most, pain. So, next time it rains I want to curl up on the couch with a good book and not have to swallow a handful of pills just so I can walk. I have hope that one day I can truly dance in the rain one more time.

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Autumn

Labor Day............I remember that it marked the end of summer. I spent all week before Labor Day at the fair working on the Junior Fair Board. It was so much fun! It was the first gathering before school started and you were able to see all of your friends for the first time since school had let out a few months before. I can still smell the french fries cooking and the elephant ears frying!!!!! Still to this day those particular smells always take me back to my early fair days. Mmmmmmmmmmmmm delicious! Labor Day was always filled with excitement because it was DEMOLITION DERBY TIME!!!!! Cars decorated and crashing into each other......it does not get any better than that! I remember I dreamed of being in the powder puff division because even thought I was a girl crashing those cars seemed like so much fun!!!!!!

After that night the fair was over and it was time to pick out the first day of school outfit. I remember the first day of school and hopping on that bus. It smelled exactly the same as it had the last day it dropped me off in May. It was time for a new year, new adventures and saying goodbye to the warm sunny days and welcoming the crisp air of fall.

Nowadays us Lupies jump up and down on Labor Day and celebrate the end of summer! The hot weather that irritates our Lupus is coming to an end! The sun will not shine as much and the heat will gradually disappear and so will our rashes from the sun. We can finally go outside and actually enjoy ourselves!!!! You see, some Lupus patients, 60%, suffer from sun sensitivity. The sun can cause severe rashes on the areas being exposed. This is why we are the ones wearing long sleeves in the summer. The sun can also cause us to feel unwell and sick all over. It feels as if you have the flu. For me I have experienced blotchy rashes, flu like symptoms  complete and utter exhaustion and my joints on my fingers will swell and cause so much discomfort that it is hard to even move your hands.

So, bring on the cooler weather and the smell of fall! It is time for us to get outside and enjoy a little bit of the beauty that fall has to offer! We will finally be able to join our family and friends on adventures. I will not be the one staying home this time of year and the best part, no one will think I am crazy wearing my long sleeve shirt!

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PLEASE continue to remember it is National Chronic Pain month!!!!!! You know someone who is suffering in silence........you know me by reading my blog and there is not a moment in the day that I do not feel pain and there are so many more people who feel exactly the same way! If you know someone ask if they need a little help today and help relieve the burden that chronic pain puts on their lives. 

Chronic Pain

I wake up every morning and lay there silent and not moving. What kind of day am I going to have???? I slowly start moving and I am reminded that today may be a good day but there is pain from sun up to sun down. Once I start moving a bit it is time to make the hardest step of the morning.......the first one. I can feel the joints try hard to move and stiffness is sometimes unbearable. I keep telling myself that I just need to make it out of bed and move around a bit and if it is a good day, the stiffness will subside but if it is a bad day it will be hard to even walk up a down the steps. It is like rolling the dice and you just hope you are lucky today.

I, along with so many others suffer from chronic pain. It is a debilitating part of my disease and can make the simplest tasks seem like giant mountains. I wake up every morning intending to climb that giant mountain and some days I am lucky but most days I may only get up half way before my body decides to make the long trek back down the mountain. It is not only hard for us as patients who suffer from chronic pain, it is also very hard for our families to see us in so much pain. It can be devastating to ones life and life changes are needed in order to make life a bit easier. 

Recently Tim and I made the decision that I would go on short term disability in order for me to focus on my health. It was such a life changing decision and one I struggle with everyday. I miss my independence as a woman and as an individual. Tim and I both understand it was necessary in order for me to be able to actually have a fighting chance at increasing the quality of my life. I won't lie, it is a hard choice but for me it was the only choice. My Lupus is "sleeping" right now but the pain is still there and will always be there like my shadow. I will always have a shadow and I will always suffer from chronic pain. It is a part of life, my life and one that I must come to terms with.

An amazing women decided she was going to fight for individuals with chronic pain. Barby Ingle has given all of us a voice and because of her drive and compassion September is officially Chronic Pain Awareness month! I am so thankful for her and her perseverance. We all now have a voice and those who do not suffer from chronic pain may understand a bit more about this debilitating issue that affects so many. So, if you do not suffer from chronic pain thank your lucky stars but please research it and understand it because I guarantee you that you know someone who is affected by chronic pain every moment of every day.

Here is your factoid of the day:

CNP, pain that lasts six months or more and does not respond well to conventional medical treatment, affects more people than any other type of pain.  Thirty-four million Americans suffer from chronic pain, and most are significantly disabled by it, sometimes permanently.

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