Recess

We can all remember being cooped up in that classroom every morning. We try our very best to concentrate on what our teachers are saying but something is pulling at our young minds. Is it hunger? Is it reading groups? NO, ITS RECESS!!!!!!! We all used to line up and the teacher would tell us to stand very still. There was no pushing, tugging or ditching in front of others. Oh how hard it was to stand still! We all had to have looked like we had ants in ALL of our pants! Finally the sweet bell would ring and we would be released out into the bright sunshine of morning recess! 

Morning recess was the best! It was the perfect time where there would still be a lingering coolness from the morning dew that remained on the grass but the sun was moving closer to its peak so the warmth filled you from head to toe. We started off with jackets but by the end of recess all of our jackets were thrown in this pile by the door. Well, today I got my recess! I am no longer sentenced to bed rest and freedom awaits me outside!!!!! Wooooooo hooooooo!!!!!!!

Tomorrow morning I will start this recess by waking up when the moon still lights our way and Lisa and I will walk little Emma around the golf course. Soon I will be riding my bike again and enjoying that moment when the sun rises and pushes the moon back to its sleeping position! I know Tim will be reading this and I PROMISE I will go slow and still rest the majority of the day. I will listen to my body and its warning aches and pains telling me I have been pushing it just a little tooooooo far. I will go to bed early so I am not rubbing my eyes on our walk. I promise I will only go on the short loops when I start my bike riding BUT eventually my destination will be Krya and Brandt's to visit baby Austin in the morning! 

You see, I saw my new rheumatologist today. At first visit she seems like a wonderful doctor who really listed to me and has made adjustments in the medication to make sure I stay as comfy as my body will allow. We are at the maintaining phase of my Lupus so shot day will have to stay at 5 cc every Thursday. Hey, that is better than 7 cc!!!!!!!! We will take it!!!!!! Maintenance will only last so long and it is inevitable that Lupus will wake up and join us once again at the dinner table BUT when that occurs Benlysta is the way we will go. That is reassuring for me and my family and friends. We have a plan of attach once we need it! 

So, while we are in this maintaining phase I am going to run out every morning with ants in my pants. I will breathe in the cool air and feel the warm sun from head to toe! In my mind I will be making a movie that I can play over and over when the yucks reoccur and all I do is basically watch paint dry. I will visit Krya and baby Austin as much as I can and enjoy the morning walks with Lisa and Emma. This may not last forever but it is perfect for right now!

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

Monday

As the new week begins and Monday comes to an end another week of bed rest starts. This week is filled with doctors appointment's on Tuesday and Thursdays but it seems that will be the only time I am able to spend time out of the confinements of my own room. I say my own room because walking to the kitchen or even to the car causes a massive coughing attack and an out of breath moment I want to avoid at all costs. So, unless I am in the doctors office I will be found in my bed covered in a blue fluffy blanket surrounded by sock monkeys and pictures of my family and friends. 

It is funny how being stuck in bed you still have a favorite time of day. For me my most favorite time is when everyone starts coming home for the day. I hear people opening doors, greeting their loved ones and playing with their pups. Both of our neighbors have HUGE dogs and every night you can hear the excitement in their homes. The dog can not decide which way to go!!!!! Does he go up the stairs away from his loved ones or should he circle them in the small entry way? It is something so simple but so beautiful. 

My neighbors used to annoy me to pieces! They would play their tv, music, video games, whatever it was until really late at night. Oh how angry I used to get! They were intruding on my calm and quiet night! I actually welcome these sounds now and the later they play them the better! Someday's this is the only tie I have to actually someone else living and breathing. I lay here in bed and try to guess exactly what it is I am hearing. Do I recognize this one? Does it have reoccurring beats that you could associate with video games or is that a crescendo that you can easily see occurring at the best part of a movie? Who knows!

Today was a tougher day than normal. I can normally pass the time away in bed by reading, watching movies and even coloring......yes, I said coloring! Today was a bit different I ended up sleeping in until 11:30 am. Do you ever have those dreams that are so real you wake up knowing that is what happened? I had one of those today. I had a normal dream about a normal day Tim and I would normally have and I woke up expecting him to be here until the massive amount of covers to the right of me. Once I really woke up I understood that was part of my dream and he was still in Chicago and I was still in bed  resting. Everything was just off after that. I started running another fever and my cough is turning in to a bark and the dogs next door barked at me! Ok, this made me laugh! I just pictured this dog on the other side of the wall sleeping and he hears another dogs bark and he is alarmed BUT it was actually me, hehehehehehe!!!!!!!! This could turn into a game!

In the next hour I will start to hear the familiar sounds of everyone's days coming to an end. I will smell dinners being made and of course I will hear the eagerness of the family pets greeting their owners. I will fall asleep to thumps of music as I try to figure out exactly what the thumps are saying and tomorrow I will wake up to another quiet day in bed. I will watch the clock again until the end of the day approaches and my favorite part of the day begins. 

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

Breathing

Wow........is this week over yet?!?!?!?!?! I guess my week, I should say our week (Rachael) started Sunday morning. I was staying with some friends, Krya and Brandt, and that is something I really like to do when I am unable to be with Tim. This stay was so much fun because there were two pups in the house and a seven month old baby, Baby Austin!!!!! All three things listed I adore!!!!!!! Brandt was leaving the country so it was going to be just us girls fending for ourselves with a house full of pups and baby laughter. I had to miss out on a lot on the first half of Austin's life because I was so sick all the time. I finally felt well enough to hang out and relax with Krya throughout the week........or so I thought.

Over the last six months I have been going through so much testing at the Mayo Clinic. I was being seen for my Lupus, chronic cough and anything else that popped up over the course of the testing and as I saw doctor after doctor. I finally felt that over the last month we were headed in the right direction. I was still frustrated with the findings week after week but I had this need to have control over my life again. 

Something that I had to stop doing over the last year was riding my bike. I would normally get up at 5:30am and I would ride until about 6:15am and head off to work but when I started having reoccurring infections my bike was set in the garage not to be bothered again for sometime. It broke my heart and a bit of my soul to say goodbye to the sunrise filled mornings when the air was crisp filling me with life every time I took a breath. I always knew I would be back to riding as soon as I felt better but I could not foresee the upcoming year and the struggle my body would endure. 

Finally, after over a year I jumped back on my bike about three weeks ago and felt like me again! The sun would rise as I rode and the end of summer is found in the first few crisp moments of the day. I was back! I felt as if I was finally gaining control of my life! The doctors could continue to give me the run around but I was the boss of my life! I was riding every morning, doing a little cardio mid day and tying it all together with yoga before bed! I was visiting my friends more, I was volunteering with my friend Jessica and I even went to the movies with Rachael!!!! I felt normal, as normal as I could possibly feel!!!!

This past Sunday I woke up and rode my bike while Krya and Austin took Brandt to the airport. I went back to bed after my ride and woke up not breathing very well. I sat up in bed for a little bit and then sat on the floor trying to focus on my breathing hoping it would get stronger and this panicking feeling would subside. Finally I went downstairs and told Krya I was not breathing well and I needed to go to the emergency room. I would not let Krya take me to the emergency room with Baby Austin! So, I got in the car and called Rachael and Tim to let them know where I was headed. I finally gave in against my stubbornness and asked Rachael if she would meet me there so I wouldn't be alone.

After many hours in the emergency room and after so many tests had been ran the doctors discovered I had pneumonia in the upper left lobe of the lung. I was immediately started on intravenous antibiotics, two bags of fluid and pain medicine that made me feel MUCH better!!!!! I was sent home with the strongest cough syrup I have ever had and a ten day dose of antibiotics. I settled into bed and just waited to feel better! Most of you know that this waiting is like watching paint dry, it can never happen soon enough!

I thought after Sunday's ordeal I was out of the woods and on the road to recovery. This morning I woke up very tired and had to go see my own doctor to follow up with the hospital findings. The doctor listened to my chest and told me I needed to go back into the emergency room. He would prefer them to admit me for at least a day for observation but there was no way I was going to go down that road!!!!!! I did go to the emergency room to make him happy and of course I called Rachael and guess who was waiting there for me when I got there.......Miss Rachael!!!!! I looked at her and I told her Sunday must not have been fun enough for the two of us so we would try harder this time!!!!!

Time passed and finally I was being released. They were actually able to identify where the pneumonia was by the chest x-ray today. I was given lots of fluids and the good pain meds again. I settled back into bed and fell a sleep just wishing I would wake up better but I am realistic and I know that is something that will take a little more work this time around.

Tonight I have to try to sleep sitting up and every once in a while I find myself worrying about my breathing. Normally I have Tim with me and that safe feeling is there even if I don't recognize it. This is a bit different and I find myself nervous when it comes to falling a sleep. I worry I will stop breathing in my sleep because it is so difficult to breathe when I am awake. I know that seems silly to most but for me it is real right now and if I am going to get through this little bump in the road I need to just get this feeling out there. So, tonight I am sleeping sitting up as much as possible. I will be waiting in my dreams for the sun to come so that I can mark it down mentally that I am breathing another day in and hopefully at the end of this day my fears will be a little less and my head will be closer to resting on my pillow normally.

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

Waiting Room

As a kid I would get the occasional ear infection and yuck from school. I always hated when I got sick! It almost always meant a trip to the doctor. I don't know if it is just a memory I made up in my head but I would walk in and it would always smell like rubbing alcohol. I knew right then this visit was not going to end with a lollipop and a pat on the head........I was getting a shot and I knew it!

I was horrible at getting shots! I remember them pulling the top part of my pants down and I would just cry and scream! My poor mom!!! When it was all over the doctor looked at me and said that wasn't so bad! Not bad........he just stuck me with a needle and that was terrifying to say the least!!!!!! I ended up with a lollipop but still, I am not so sure it was worth it! It is kind of ironic due to the fact I have to give myself a shot every week......if I could only see that doctor again, now we could have a good laugh and I would agree, it wasn't so bad.

I have not been poked or prodded in weeks and I don't have any of the veins blown out from blood being drawn on my arm. On that topic.......I hope they understand that it isn't so bad that they blew your vein out, it is the weird looks you get as they heal!!!! I swear people think I am a drug user!!!!! No saying cheese as they take pictures of random body parts and no one looking at me a saying I don't know what to make of you and send you off to the next eager doctor. That all ends tomorrow. Tomorrow morning I will wake up, get dressed and grab lots of reading material. Tomorrow I go back to being a patient at Mayo Clinic. Tomorrow I start the hide and seek game with the doctors......what illness is hiding and what is showing its true colors.

One thing I learn every time I am waiting in the waiting area is that people truly do love. I see couples holding the hand of their loved one who has no hair. You see concern on the wife's face as she holds her husbands scans. You see true love and it is humbling. I almost feel as if I am interrupting a very intimate moment for these people. You can see so much fear and love in one place. When their loved one is called back they always look at each other, grab each others hands and smile as if the fear on their faces two seconds ago never existed. They are now putting their brave faces on for each other and holding their heads high so no one can see the fear and uncertainty in their eyes. They have pulled their lip in, raised their head and remember that this life they chose so long ago was built on for better or worse and in sickness and health.

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

VOTE!!!!!!!

OK.........it is crunch time for all of us fighting chronic pain. Please take a few minutes to go in and vote!!!!! It is only two clicks and presto..........you are done!!!!! If you could also post it as your status we will spread the word even more!!!!!!! LETS VOTE!!!!!!!!!!!!!

FIRST go to this link:

http://www.facebook.com/ChaseCommunityGiving/app_162065369655

Once you are there you can search for the POWER OF PAIN FOUNDATION!!!!!! Now you just vote and if you share it with a friend you get an extra vote!!!!!!!!!!

THANK YOU EVERYONE FOR YOUR LOVE AND SUPPORT!!!!!!!

Outlaws Prayer

When I close my eyes at night I am swept away to a place that seems so far away but so close that I could touch it. I dream of being under the stars. Stars that are not hazed out by city lights. I would love to be in complete darkness with only the moonlight to light my path. I would love to be so far away that the sounds of the city are but a memory and that line of cars is replaced by the lines of the big dipper.

I live in the fifth largest city in the United States, Phoenix. It is not a bad place but a place that is filled with smog and the sounds of life never quiet down for a rest. The people tend to push their way through the days and lay their heads down worrying about tomorrow. Arizona has amazing heritage but to find someone who was born and raised here is like trying to find a needle in a haystack. The pride of others belong to the states they moved from and instead of uniting we are all separated by giant concrete walls. It can be a lonely city sprawled out over miles and miles but the state itself holds an immense amount of beauty and wonder once you make it past those city limits. 

Tonight when I lay down I will picture myself in the pines up north with our closest friends. It will smell like Christmas everyday and every night we will laugh together surrounding a camp fire. We will tell stories of our adventures, re-account momentous occasions and reminisce about our lives that led us up to this one moment. We will be transformed to a place where no one is sick, no one is worried about their jobs and no one is unkind to one another. I will keep myself there until the bright sun pokes through the curtains and the sounds of traffic wake me up. I will push my way through yet another day and count down the hours until I am home again amongst the pines, camp fire and friends that truly define my home to me.

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

Again

I know that I have already posted about chronic pain recently but it is National Chronic Pain Month and so if there is ever a time to write about a topic regarding the problems of chronic pain, this is it! It is not a fun topic to talk about and most individuals do not understand chronic pain and what it means. Let me start by saying that it is not the pain you feel right after surgery and the weeks following while you heal. Imagine a pain like that but having it everyday of your life. Most people hate having dental work done. They go to work afterward sore and it hurts to open their mouths. The difference between that pain and chronic pain is that pain will go away. It is a pain that lasts for month and even years and can haunt an individual for the rest of their lives. Chronic pain can be associated with other disease such as Lupus, MS, Chron's Disease and cancer patients. It is hard to diagnose and extremely hard to treat.

There are days when my chronic pain is worse than others. In the video below you will see him use a feather  as an example. If you would rub a feather on someones arm who does not have chronic pain it feels good and can even be relaxing. For those of us who suffer from chronic pain the feather does not feel good. At times I look at Tim and tell him my skin hurts and burns. There are nights I am cold but can not sleep under  the covers because the covers rubbing my skin is so painful. It is a scary disease and it is very hard to make others understand. I know some people think we are crazy and just are looking for good medications........oh, you are right, we are looking for good medication but not in the way some think. We would like to find a medication that makes it so we can bear to put on long sleeves. We are looking for medication that allows us to hug our loved ones without pulling back because of the pain a hug causes. I would love to find medication that would allow me to sit at a desk long enough to put in a days work. It is tough suffering every moment of everyday with pain that can truly bring you down to your knees. I have had shots go directly into my shoulder joint and shots go into my head where the needle is longer than your hand. To me that is not someone who is looking for a good time with strong medications. 

For the first time ever I have sought out treatment from a chronic pain doctor. My doctor is also a board trained anesthesiologist. I held off for so many years because I thought they will just push pills and not hear what I am saying about my pain. I was proven very wrong. For the first time in a long time I left his office feeling hopeful that one day my chronic pain may be less than it is right now. It is a process because all we really have are the medications that mask the symptom but there are new medications made for other diseases that are being used for chronic pain. I truly want to stay off of heavy medications as long as I can. I have decided to take something that is not considered a narcotic but treats the pain like a narcotic would. We will use this until the pain wears through and then, unfortunately, we may have to go to something stronger. 

Chronic Pain is a disease in itself and needs to be treated as one. The sad part is that it seems to tag a long on the tail ends of other more known diseases and is often over looked. With this being National Chronic Pain Month lets become a little more aware. Lets remember it is a terrible disease by itself and lets hope that we have doctors out there trying to make a difference in a little known disease that alters so many lives.

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