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. 

                                 https://www.wepay.com/donations/danica-s-doctor-delima

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.

https://www.wepay.com/donations/danica-s-doctor-delima

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!

https://www.wepay.com/donations/danica-s-doctor-delima

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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Letting go.

One of my favorite projects in school involved something as simple as a letter and a balloon. In grade school the teacher had taught us about pen pals. Pen pals??? As a kid I had no idea what that that was but my teacher told us about having friends you had never met and sending letters back and forth!!!!! I was a little hesitant about this because another reason to write??? I think my teacher had an ulterior motive when it came to this pen pal thing! So, one day she brought in a massive amount of balloons! We wrote our information on a small piece of paper and she tied each one to a single balloon, mine was red. After lunch we went out and she handed us our balloons. She told us to be patient as she passed out each and every one. Yeah right, patience in grade school, that is like telling a dog to not eat a treat that sits in front of him!!!! We all did our best and in the blink of an eye she yelled let go! 

I can still remember watching my red balloon get smaller and smaller as it went higher and higher! After we let go I felt the excitement in my stomach and focused all my thoughts on that one balloon. I just kept thinking go little balloon go! I wanted a pen pal and that balloon was my key to finding one! I remember thinking about it for a long time after that.........in grade school years, a few days. Finally one of my classmates received a letter from someone who had found their balloon! Everyday I would watch as more letters came in to my surrounding classmates and how I would just wish for one letter......just one! Finally when all hope was almost lost on my red balloon I received my letter!!!! What makes me laugh to this day is that letter I had wished for for so long, I don't remember it and I did not hang on to it.....I can not even tell you what grade I was in. What I do remember is that red balloon and the the words spoken by my teacher..........let go.

Today I was seen by an ENT at Mayo Clinic here in Phoenix. She was a wonderful doctor with an amazing bed side manner. She made me laugh end even let a little secret out, it was my nurses birthday! I thought to myself as she pushed a camera through my nose this doctor will answer my wish!!!! She would be my red balloon! After all, I have seen over eight doctors since the second week of June. Every doctor I see runs the tests and I stump them! They then think about what they could not see and send me to the next specialist. This is not necessarily a bad thing and what I love most about Mayo is that every doctor is intertwined by their computer system. You don't have to carry files upon files of your medical history and you don't have to wait for the tapes of your scans.......it is all there! There for each and every specialist to pull up and examine. Questions answered before they are even asked! It is actually brilliant and I think it is what makes places like Mayo so special.

Well, my amazing, wonderful bed side manner ENT was not my red balloon. She was a bright spot in this process but had no answers for me today. It is so hard when you get your hopes up. Someone who experiences pain and illness on a daily basis wants the answer....they want a miracle and sometimes those miracles just don't make it to them. You have to just let go sometimes. You have to throw your hands up in the air and say ok, I am letting go and what will be will be. You make a choice that enough is enough and walk out of the doctors office with your head held high and move on.

This is not something they only tell people who are ill, it is a lesson that we learn in every aspect of our lives. You may be letting a relationship go or anger and resentment you have. You may be letting a loved go after a long battle with sickness. You may be letting friends go as distance separates you. It may even be as simple as letting go of being on time! Letting go is a part of our lives. It allows each of us to grow. You learn lessons when you let things go and you learn what you are made of and how strong you are. Right now my mama is having to let go of an old family friend. He has had an amazing life and an amazing love. My dad had to let go of his mama last year. She had been so sick for so long and fought everyday of her life but it was time and he let her go.

Today I did not receive my letter. My doctor did not have any answers for me today. I will be seeing another specialist. That will make the count for individual doctors nine after October. I am frustrated and battling with the unknown. I must let go. I have let go of that red balloon and today was not the day but I can still see it floating higher and higher! I will wish for it to makes it way into the right hands and I know one day I will wake up, walk into a specialist and they will have my answers. They will have found my red balloon.

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Step up and give me your tickets please!!!!!

It is a very weird feeling that comes over you when you have been the subject of so many tests over months and then.....it's over. You would think that a feeling of relief would flood you and you would do a dance because no more pokes in the arms, no more stand there and breathe only when I tell you and no more barium mixed in applesauce. Believe me there is relief but there are also a lot of questions.......what now?

Most people who have chronic illnesses go through an array of testing when they first get sick and periodically through out the rest of their lives. It is mostly to monitor what the medications are doing to you and what result they are having on your system. Sometimes you may have a new symptom that has just decided to grace you with its presence and sometimes it is just quiet inside of your body. For everyone just starting this process........you will be poked, prodded and tested for everything! You have doctors ask you questions that make you blush! The doctors may even have your loved ones blushing!!!!!!! Regardless of who is blushing, the testing is tough, the days are long and you hope in the end there are answers or more knowledge for you to put in your back pack for a rainy day. What happens though when there isn't new information for you and your loved ones???? What happens when the answer to all your questions was not found???? What happens if when all of the testing is over and the only thing you are left with are more questions?????

This is one of the hardest parts about having a chronic disease and is even more prevalent in auto immune diseases. There are more than eighty autoimmune diseases that have been identified over the years. Some are more common than others and some are more treatable that others. The outcomes can be very different from one to the other but so many of them are misdiagnosed. How can that happen????? The problem is that every autoimmune disease seems to have a symptom that overlaps through out all eighty. This can be joint pain to the inability to sleep. I wish there was one blood indicator that you could test for that would tell exactly what disease it is that haunts your every waking moment but there just isn't. Life is full of questions and instead of answers most of the time all you find are more questions. I wish I could report something different but I can't. 

I have had Lupus for many years and right now, according to my beautiful Lupus blood work, I am in remission. Basically my disease is sleeping. BUT if my disease is sleeping why does it still hurt so much and why doesn't all of the other physical symptoms take a nap too????? I asked my doctor this the other day and she looked at me and said she doesn't know why and that is part of the autoimmune experience. Experience, that reminds me of some roller coaster you are getting on.......YOU WILL EXPERIENCE THE RIDE OF YOUR LIFE!!!!!!! Well, that sound like more of my life than a fun ride!!! Back to the beautiful blood work for my Lupus: yes, I get that it is beautiful but it took seven years of weekly chemotherapy to get to "beautiful". It has caused bald spots and so much pain you are left gasping for air. So finally I am testing pretty and normal BUT that is on the max dose of methotrexate, chemo, and there is nothing normal about that! 

Back to the question, now that the Mayo Clinic testing is coming to an end where do I go to find answers or to uncover the answers of the universe??? I don't think at this stage in our medical lives they have those for me. They have been wonderful and I have seen some of the most amazing doctors but they are not Gods and they can not see why I am so sick but my lab work is so pretty. They can not tell me if five years down the road my liver and kidneys will work but what they can give me and have given me is a sense of a partnership. I am not alone in this battle and these brilliant minds are looking out for me and everyone else who may have one of these eighty autoimmune diseases. They are looking under rocks and in silly places like amusements parks for the key that will end all suffering! I may not have signed up for this the moment I was born, they  did not check to see if I was tall enough and there have been some ups and downs and I know there will be more but one thing I will remember when I close my eyes tonight.......they do not lie to you when they look at you and tell you, this will be the ride of your life!

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