Sadness and Joy

As much as we try to shelter ourselves and busy ourselves with the upcoming holiday you can not help but to notice a change in the world as we know it. From a sense of sadness and uncertainty that gripped each and every one of us on Friday as the news came in, we were left stunned as a nation gripping with the realization that our tiniest members are not always sheltered from the ugliness waiting for them outside of our loving embrace. It is the happiest time of the year for so many and slowly grief fell on us as a country and covered our joy with sadness. 

Most of us are not mourning for the loss personally because we have not lost someone we love but we are mourning with the thoughts of the little ones we still get to love. Some feel guilt that as the new year rolls in. A new year full of firsts, laughter and love with their children is at the front door waiting to be let in. How did they get so lucky and how devastated would we be had the roles been reversed? 

Friday night all I could think about was my little princess Lauren. Her smiling face that is speckled with baby deer spots (her freckles) and how her voice and laughter is so innocent and full of hope and her blues eyes shine so bright every moment of everyday! She was just a little younger than the precious children affected by this tragedy and next year she will be entering Kindergarten. I allowed myself for one moment to think about what would life be like if her bright light was blown out before any of us were ready. My heart broke and my breath was stolen from my chest. I remembered the last hug I gave her and how I wiped her tears as I left for Arizona. I thought of all the stories I have read to her and how there are so many more out there to share with my little red head angel and her beautiful baby sister Mia. I knew in that moment that I was lucky because my life with Lauren and Mia has really just begun and I still have time and magical moments to share with them! They will ride their first roller coaster (I think Mia will cry like her Aunt Danica), try so many flavors of ice cream and will be able to experience the joys of growing up and I will be there to cheer them along the entire way! 

I thought of Suzette and how she goes into a school building every morning with the hope of touching a little ones life. She leaves her life behind every day so that she can educate the doctors,  lawyers and future teachers of our world. She loves them unconditionally even when they have naughty streaks. I can not say that she would give her life if she was faced with this situation because she already has.....every moment of everyday when she enters her classroom. She not only has four kids of her own but has twenty five new ones every fall. Those are her children just as much as we are and the love that is poured out everyday is what changes lives and our world. 

We will continue to feel sad and question why and be thankful that almost all of us have been spared and our families will be together. We also must celebrate the joy that our most innocent loves bring to our lives. I want them to stay young for as long as they can. I want them to be protected from the anger and confusion we see so many times as adults. Let us all celebrate the gift of life....young and old and let us remember that there is eternal beauty in all of our homes and hearts and that is the most powerful gift we can share during one of the most difficult times our nation faces and during one of the most magical times for the millions of little ones still embraced in our hearts. 

Christmas

I may not have came from a lot growing up. I may not have seen the world or had fancy parties. One thing I grew up with was love. Unconditional no matter what you did kind of love. I remember coming down the stairs at Christmas and no matter how many presents were under the tree it was such a special day full of magic, love and laughter! The Christmas tree sparkled, snow was always a possibility in our minds and there was a hint of magic in the air. Letters to Santa were wrote and mailed with a hope of receiving everything on your list but come Christmas morning that list did not matter and whatever it was that Santa left you was the best present ever! I remember Christmas night when the day was almost over we would always say to each other, this was the best Christmas ever and every year it was! 

I miss the childlike wonder that Christmas represented and slowly with little ones being introduced to our family you can feel it and see it begin again! Letters to Santa are written and our Christmas Eve traditions growing up are passed down to the next generation. Cookies are being left for Santa. It has truly become the most magical day of the year again! You can see in their eyes that every Christmas is the best Christmas!

Every year I know I may be toooooo old for letters to Santa but I still compile my Christmas list in my mind and heart. I have replaced wishes for a new doll with wishes of less pain. I wish that next year less will suffer and more laughter will be heard every where I go. I wish to come across a new special spot to replace the old one because this means I am seeing things again! I wish for my beautiful nieces to continue to grow and express themselves.  I wish for a new beginning for them everyday and hoping that everyday helps to build who they are tomorrow. I wish for my sisters and brothers to enjoy those special moments in their lives that take their breath away. I wish that this time next year we will all be together again, if not in person in our hearts. I wish for new challenges and new beginnings. I wish for the loves of my life to find joy and contentment in their surroundings they find themselves in. I wish for all of us to continue to give unconditional love to the ones in our lives that may need it the most. I wish for my love to continue to grow and open new doors into the future. I wish for more of those small moments you find yourself in when you beg the world to stop for just a minute so you can record everything in that moment in your heart. I wish to dance more and to have the ability to move without the stiffness of the tin man. I wish for just one day that everyone can come home at night and just be with their family and truly have that be enough to fill their hearts until the following night when we get to do it all over again. 

My wishes over the years have become more about love, compassion and growth. I would love to ask for a doll and have that be enough to keep me going until the next year or the next holiday but I have continued to grow. I have realized that time does not stop for anything and those moments that we want to record will never be here again but the memory of those moments will live on and be in our lives just as long as we remember. 

This Christmas take a moment to look around the room at everyone joining you. Listen to the laughter and joy in their voices as the celebration continues. Feel the warmness in your heart and close your eyes. Capture that moment in your heart. Let that moment live in your memory throughout the year and let it remind you that even though Christmas is just one day that comes along each year the love you feel at that moment is forever. 

Don't let the door hit you in the booty!!!!!!!!

I find myself unable to sleep in lately. Most of the time it is because I have been able to spend some time with Tim in Albuquerque and sleeping in tooooooooo much is a waist of the morning. Oh my goodness I sound like my wonderful grandma! Other times I think it has to do with the pain that comes with the colder temperatures during the night. I swear, if you have anything affecting your joints you are now your own meteorologist! You can tell within 12 hours if the temperature is going to drop drastically or if rain is moving in. There is absolutely no reason to watch the weather channel when you have us around, hehehehehe! 

Now that we have established our joints and different patterns it is time for me to give you the update over the last few months. It has been a trying few months but that's ok, we will all have those in our lives. Since I have last updated you I have seen the pulmologist, gastroenterologist, and nephrologist. Yes, it has been a busy few months!!!!!!! You would think with all of those appointments I would have some answers and I do but I questions just a few of them so here you go!!!!!

It began with the pulmologist. If you are reading and you personally know me you will know about the cough I have had over the last year. It is not very productive but can cause me to breathe really deep to catch a breath and some times that is way to difficult to do. I was diagnosed with adult asthma seven years ago but as soon as the pulmologist saw me he said that it wasn't asthma and I probably have GERD. That is a very fancy acronym for acid reflux disease. I have never had acid reflux so I could not tell him toooooo much. He referred me to the gastroenterologist. 

When I saw the gastroenterologist we talked a bit, listened to my lungs and also confirmed that he to also thought it was GERD. I said ok we will see what the tests show and we will go from there. So, they implanted a device in my esophagus for a forty-eight hour reading (thanks Connie for going through that gross procedure with me). Once they had the readings I went back for my consult. She looked at me and told me my readings for the first few hours were off the charts but after that they were perfectly normal. To me that sounds like I don't have issues with acid BUT she accused me of taking acid blocks during the normal readings and so she put me on two very strong medications for GERD because the first few hours were high. Ok, I am not a doctor. I am good with numbers and love to make things from my own home BUT I think anyone could see that maybe the readings were very high the first few hours because you just planted a foreign object in my esophagus........I am not a doctor.....I am just saying. 

After all of that hooplah I went in to see the pulmologist again. I was so excited for this visit because I had just finished with two rounds of pneumonia and been in and out of the hospitals in Phoenix and one tiny visit in New Mexico. He walked in and asked how I had been. I went on to explain to him that I had been dealing with pneumonia and he looked at me a said I really doubt that! I was so taken back by this and I just looked at him and said ok, here are my scans. He looked over them along with the scans from his own emergency room and didn't say much about that except he doesn't really read these anymore. I was appalled  I made it through the visit and he never even listened to my lungs. He told me to give the strong medicine for GERD a week or two to kick in and I should see some relief. That was over a month ago and I still have my cough, issues with breathing and I don't feel any different with the medicine. Next........................

I have to deal with REALLY high blood pressure and not just some of the time.....most of the time. For example my reading on Saturday night was 159/99. So off to the nephrologist I go!!!!!!! I went through my examination and he didn't have toooooo much to say except to stop one of the blood pressure medications and add a new one to replace it. The funny thing about this medication is it is also a diuretic because some people who have high blood pressure will carry a bit of water and other goopy things and that can put a lot of pressure on your system. There really is no reason for me to even have blood pressure issues. I have had high blood pressure since I was 24 and no one ever questioned it. I asked if we should look at the adrenal glands and make sure they were ok. He said no, not right now. I left and I think that was the final visit before Thanksgiving. 

Lions and tigers and bears oh my! The answers I have received have seemed ridiculous and so far fetched. Through this process we were hoping to change a medication or two and hopefully eliminate others but they have just added more and more on top of the ones I have always taken. It has been trying and there were times I look back on and I am so happy no one was in the car after these appointments! 

So, for now I have decided to give myself and most importantly my body a break over the next few months through the holidays. It has been so exhausting and painful over the last six months and I want to enjoy the holidays with my family and friends! Please do not take this as me giving up.....think of it more like a recess and yes, I am running out the door screaming with joyous excitement that I don't have to go back for some time!!!!! I picture my hair that was and still is out of control 90% of the time blowing in the Albuquerque wind! I will continue to look for more answers starting in February but until then I am going to let the wind blow through my hair and enjoy my recess! 

Beauty of Love

Let me start of by saying I am sorry I was unable to share new autoimmune diseases through the month of November. It has been a roller coaster of tears and joyful moments. Let me share with you what has been going on.........it will make you smile.

Holly and I grew up just like normal siblings do. We stole each others close, argued about having to hang out together and yes, she had a little temper and kicked a whole through my bedroom door because I hid her chewy sprees!!!!!!! Thinking about that makes me laugh so hard!!!! Holly and her chewy sprees and skittles, those were her weaknesses as we grew up. As we got older and I entered high school and Holly was in middle school the fights were more emotional between the two of us. I contribute that to hormones in teenage girls! 

When I became a senior in high school Holly moved into the high school as a freshman. At this time I actually saw my Holly as not just a sister but as a friend. We were both cheerleaders, had practices together and we even dated brothers, hehehehehehe!!!!! Of course we still fought and we did this at school sometimes but nothing to bad. Holly was also my protector and she became my voice when I would get picked on. You would think that would be the role of a big sister but you see, I was soft spoken, never wanted to fight and Holly knew that. We attended dances together. Holly was on homecoming court in the fall and I was on homecoming court in the winter. My senior year would have meant absolutely nothing to me if it weren't for my sister. 

Let me tell you a little bit about my sister and who she has become over the years. Holly went to school and has her bachelor's degree in psychology and went on to get her master's degree. She is brilliant and has used her education in every job she has had and she is always confident with her work. She married Russ and they had a beautiful wedding I was apart of. A few years later I had a package from Holly delivered to my door. She had just been on vacation so I really thought she sent me a treat from her travels. When I opened the box Holly told me she was pregnant through the onsie! I was going to be an aunt!!!!! A few more years later she called me while we were at one of Tim's mountain bike races and asked if I was ready to be an aunt again!!!!!!!! Holly has grown effortlessly into her roles as a wife and as a mother. The beauty she shows in her face when she talks about her family is something I rarely see from others. She is truly happy and complete with her amazing husband and her two angels that she loves to death!!!!! 

A week ago Holly put on her big girl pants and settled into the hospital. She had a headache but that was not why she was there. You see, one of our closest and dearest friend, Todd, has a kidney disease and last February they tested family and friends. Little by little the list got shorter and shorter. It seemed like no one was going to be a match. In the beginning Holly wanted to get tested but as long as Mia was breastfeeding she could not be tested. Once Mia was drinking from a cup Holly started the process. Little by little she had tests done, repeated blood work and 24 hour urine tests. We still were not sure if Holly was going to be a match. If she was a match they would call her in a few weeks to set up a body scan and that will indicate she is a match. A few weeks later Holly received the call for the scan and in the end she was a match for Todd. Holly wanted to donate one of her kidneys to Todd. It took her a day or two to tell Kim and Todd but she eventually did and it was a very emotional moment in their lives. The date of the operation was scheduled for November 20th. When they checked in their rooms were very close and so I warned them not to party tooooo hard or else they will kick them out!!!!! November 20th was a beautiful day. The operation was a success and our families are truly connected. They are both home and still recovering but they are both doing amazing!!!! 

I always knew Holly would do amazing things with her life and would make wonderful choices along the way. In this one moment everyone could see the sister I love and the sister I see not only with my eyes but truly see her with my heart. When I asked Holly how she felt once she found out she was the downer she just simply stated, "This not something I want to do but it is something I have to do." She knew she held the gift of life Todd needed. Todd has done so many things for our family and we have known them from the moment we were born. In true Holly style she kept everything very private during this process. She didn't want to be called a hero because according to her she is not. She just wanted to have it done and know that Todd will be ok. 

Holly is my sister, my best friend and a strong individual. So, Holly you are my hero not just because of the surgery,  you are my hero because you give and love so many around you. You never ask for anything from anyone. You give freely and love unconditionally  Those are the reasons I must say, Holly I love you, adore you and you are a hero in my book!

Scleroderma

Scleroderma is another rare autoimmune disease that most people have not heard of. Like so many other autoimmune diseases it is very hard to diagnosis. It can take years and will affect every individual in different ways. It can be a brown spot on your skin all the way up to complete organ involvement. It is very tough on the individual and their families because it is rare and the medication used, Methotrexate, is often times harder on the body than the actual disease itself but it is necessary in order to help control the progression of the disease itself. Please take a moment to watch the video and educate yourself on this rare autoimmune disease and feel free to go go the the website listed for more information on Scleroderma.

http://www.scleroderma.org/site/PageServer#.UKFF0uTAeSo

Multiple Sclerosis

Each week 200 individuals will me diagnosed with Multiple Sclerosis. I am especially touched by this video and thought it captured the importance of research, compassion and love. Tricia's words resonate what we all feel when we are dealing with an autoimmune disease. The simple joys in life that most people have can be a struggle for others. Having a family, walking and simple tasks such as driving can really be affected and all it takes is for one of these normal functions to be taken away and our sense of self is altered for the rest of our lives. But, as you see here, people with autoimmune diseases just want to be normal. Live a normal life but we no longer can do that without the assistance of others. Research is vital when it comes to these diseases. Educating others will inspire the younger generations to help fight a disease that will continue to affect so many.

http://www.nationalmssociety.org/index.aspx

Peripheral Neuropathy

Over the last few months one of the doctors I saw was a neurologist  I went to the neurologist because I have been off balance for some time, I lose function in my hands and develop numbness throughout my hands and feet. They test your ability to feel pain and the doctor classified mine as stocking glove syndrome. After talking to him for sometime he explained to me that due to my autoimmune disease some of my nerves have been damaged. This can cause a disruption between the nerve and how it feels and deals with pain. I do not feel pain like most people. I feel it but for me it can be at higher level. For example if I am not feeling well I may describe my pain as my skin hurting. This is true. My skin literally hurts. Breezes outside causes pain and even just wearing clothes can hurt. Some nights the blankets on me just weigh me down and cause the skin to hurt. Also I have issues with feeling my feet. The doctor told me that could be why I tend to fall more often. He told me I can not feel the actual ground under my feet like most people do. Neuropathy is very scary for the patient and very painful. It takes a lot of persistence from the patient to convince the doctor to test for this disease. If you have other diseases they may try to categorize this pain type as being normal because of your underlining condition. So, remember you are your own advocate and it is you that will be persistence and you will make the doctors listen to your pain!!!!

http://www.neuropathy.org/site/PageServer

Lupus (SLE)

I know you are not surprised that I am posting about Lupus. Lupus is a life changing autoimmune disease that can result in your immune system attaching your own healthy tissue. Lupus is different for every sing patient and treatment plans are designed to treat each individual and their symptoms. This year for the first time in fifty years a new medication was introduced to the Lupus community. Fifty years!!!! This shows that we need to keep pushing for research when it comes to this disease. The statistics show that you will know at least one person with Lupus in your lifetime. So, for the one you may know or will meet in the future, educate yourself and help those around you.

                                                  

                                                   http://www.lupus.org/newsite/index.html

Churg-Strauss Syndrome

Chrug-Strauss Syndrome is very rare and very hard to diagnose. Most diagnoses are a result of the actual patient doing research and presenting it to their physician. Once this syndrome is diagnose or if a doctor feels it is a possibility, the patient will need to seek immediate help and see multiple specialist due to the fact that it can involve so many different organs.

                                                       http://www.cssassociation.org/

Chron's Disease

I have a very special friend who has Chron's Disease and I know that she will struggle for long periods of time before her body will allow it to start a recovery process that we know is temporary. Here is an educational video. It is one of three so please feel free to go to YouTube to see the other two parts.

http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/

Celiac Disease

Celiac disease really changes the life of the patient and their family. Patients will have to change their eating habits and what they come in contact with. Hear you will hear a doctor explaining the disease on The View!

                                                              http://www.celiac.org/

Rheumatoid Arthritis

Rheumatoid arthritis is a very painful disease at times. It can be diagnosed as many other diseases but eventually it shows it true self and diagnosis begins.

                                              http://www.arthritis.org/rheumatoid-arthritis.php

Vasculitis

Here is a wonderful video on vasculitis! This is from an actual patient so you will get to hear it from the patient what it is like having vasculitis.

                                                  http://www.vasculitisfoundation.org/

Sjogren's Syndrome

Here is a video that explains a bit about Sjogren's Syndrome!!!!

                                                           http://www.sjogrens.org/

November

Ok so I have touched base before on other autoimmune diseases through out my blog. So many people who suffer from one autoimmune disease will find out through time that they may suffer from others too. It is extremely important to educate those with autoimmune disease about others they may come across and we all can agree it is just as important to educate healthy individuals about the struggles so many of us go through so that they have they have their own tool box of knowledge to help us when we need them the most!

Ok, so what is my point you ask?!?!?!?! Well, for the month of November my goal is to post everyday on different autoimmune diseases. It will not only be beneficial to me but I hope it will also be beneficial to friends who stop by the blog. All I am asking is to help me by emailing me or posting on Facebook autoimmune diseases that you, your friends or family members may suffer from or one you would like to just know a little more about. 

It is the month to give thanks for all of our loved ones and there is nothing more amazing than kindness and understanding from others when you struggle with something in silence. Please let your loved ones and friends know just how they mean to you everyday, not just on Thanksgiving!

Fine Line

Sometime having an autoimmune disease breaks my heart and tries to darken my belief in all things good. Lately I find myself feeling paralyzed by my thoughts and heartbreak. It sits so heavy on my chest at times I struggle to catch my breath. I am reminded everyday that my life is different. Some days I wake up and step one of the day is difficult to make. Other days I am reminded when I have to take massive amounts of medicine. I am reminded that I am walking on a tight rope trying to balance a normal life with my family and actually fighting for my life every moment of ever day. One slip and everything can change in a single moment. 

I want you to know I do not feel sorry for myself. I have bad days and I cry to my mama at times but I am strong and after the tears flow I pick myself up and keep pushing through. My family worries enough I don't want them to have to worry more than they already do. Yes, this is me being stubborn sometimes but at the same time it is helping me keep a small amount of my self worth. Over the last six months we have had to make some very hard choices in life. I filed for short term disability and because of that I was sent a letter termination. I have been poked and prodded so much over the last six months that the bruising from  needles and iv's would get so bad that I looked as if I was a drug user. You can see where self worth at this point is so important to me. I do not want to be a patient to my loved ones. I do not want people to feel as if they are my caretakers because as soon as I see that I see myself in their eyes as someone who is sick. I see heart break in their eyes and the pain they suffer also suffer from throughout the life of my disease. They didn't choose this and neither did I. How do you be "normal" in a situation like this? When does the heartbreak end? When do I feel better? When do my family members stop worrying?

I know that no one can answer my questions. I know that sometimes I will be a patient and there will be times my loved ones will be my caretakers. I just want a small amount of normalcy squeezed into this world of disease I live in. At times I feel as if I am in this dark tunnel just felling around for something to grab on to and most of the time not finding it. I see the light at the end of the tunnel but the closer I think I am getting the smaller the light gets. In my mind I stomp my feet and I scream! I am a 33 year old adult who will stomp her feet! Then I stop and remember that there is a reason for all of this. As I have mentioned before there is a reason I suffer and maybe some day my suffering will lead to a cure for my diseases. Maybe someone else will not have to wake up in pain. Maybe someone who would have suffered forever can lead a normal life. 

So, I pick myself up and look around and in the dark tunnel I feel for the tight rope I fell of off. I slowly crawl back up. I close my eyes and focus on balancing and take one step after another because I know with each step I take the closer we come to finding new treatments and even cures that will help those suffering. I feel that alone is worth balancing for. 

                                      

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

Super Powers

It is that time of the year when kids reach into their imaginations and pull something amazing out to be for just one day........ Halloween! Little boys want to be super heroes and little girls want to be princesses. There are little witches and goblins running around and a sense of excitement fills the fall crisp air. At the end of the night they sit down to see just how lucky they were this year! They make piles after piles, bargain with their candy to take their favorite treat from another ones candy pile! They eat as much as they can until they hear those shattering words..........time to put the candy up and get into bed because you still have school tomorrow. Booooooooooooooo!!!!!!!!!!!!! After sneaking that one last piece they put away their special costume and become themselves again. The good part is that they have an ENTIRE year to figure out what they will be next year and it has to be better than this year!!!!!!!

For those of us suffering from autoimmune diseases and other diseases that cause so much pain and anguish we have developed a super power of our own. Over time it seems that we have built up a tolerance when it comes to the pain we encounter in our everyday lives. Our tolerance is higher than most and illnesses tend to hit us harder but our body has adapted and hence our super power was born! Most people think about this and think it is great! You stub your toe and it doesn't throb, you burn yourself on the oven but you never even felt it and internally aches and pains are just part of our day. We have adapted to a very hostile environment and I am thankful for that,well, at least most of the time.

You see this super power allows us not to feel as much pain as most people but that also means our bodies natural alerting system has kinda of lost its shine. For me personally I feel pain from sun up to sun down. I may have a moment of relief when I take my nightly medications but if my body really decides to show off the relief never finds me and this results in long nights for both Tim and I. I am rolling around in pain and Tim is trying everything he can to make me feel just a little bit better so sleep can finally reach us both. It is hard and miserable at times. I also suffer from lung issues and I will tell you that I do not remember what it is like to breathe normally. Oral medication and inhalers are a part of my everyday life and without them I would have a very hard time with the most simple of tasks, breathing. These super powers of mine don't seem so super when you really think about it. It actually frightens me when I stop and think to myself that my body really does not have a way of showing me if I am injured or if my disease is acting up. 

I have been dealing with this fear quite a bit lately and it has been hard on me and it has been very hard on my loved ones. It first started one Sunday morning.  I went for a bike ride and went back to my friends house and I went back to sleep for a few hours. When I woke up it felt as if someone was pulling a belt tighter and tighter around the upper part of my chest. This pressure was making breathing very difficult and one thing I have learned over the life of my super powers is that you do not mess around when it comes to breathing! So, I went to the hospital and after seven hours of testing we found out I had pneumonia in the upper lobe in the left lung. I was shocked! I always thought pneumonia made you very sick and you would know if you had it or not. How could I not know that I had pneumonia? It was because of my super powers except these powers did not feel so super at this point. 

My family wondered how I had let it get so bad. I tried to explain to them that I don't remember what it feels like to take a deep breath in and feel it throughout my lungs or feel the aches and pains of just a normal infection such as pneumonia  My body has grown accustomed to the environment it has found itself in. It has had to overcompensate when it comes to pain so many years ago when all of this started and that has lead to my inability to differentiate between pain you get from exercising too much or if my Lupus is flaring and causing tremendous joint pain. I have no clue at this point in my life and my poor body is so out of wack that I am not sure if I ever will be able to have a normal pain threshold again or if these super powers are here to stay. All I know is that I don't feel so super today and these super powers that have been bestowed upon me can just go away! I would like to pack them in a box and send them to farthest point on Earth! After all of this I think I will have more luck using one of those eight ball fortune teller toys to guide me through life. It may not be accurate but I think it would be much more fun than having super powers!!!!!!

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

A Simple Breath

Breathe in and breathe out...........repeat this for a few minutes and when you are done you will feel a small sense of relaxation. You are breathing in and out and are clearing your lungs and making room for new air. You will feel your lungs fill up to the very bottom and you will feel them clear out, every inch of them. Our lungs play such an obvious role in our lives. If you would ask me what are the two main organs you want to continue to work I would of course choose my heart and then my lungs! I know there are other very important aspects of our bodies we need in order to survive but they are a little more hidden and go unnoticed quite a bit. Sorry little worker bits I will start thinking about you too!!!!!!!!!!

My little lungs are giving me and my doctors quite a bit of trouble right now. It has been one year since I came home from vacation with strep throat. That was tough!!!!! I ran a fever of 102 all the way up to 104. I begged to be taken to the hospital so many times but the doctors kept telling Tim this was normal for strep throat and it will pass. Of course it passed but it took two doses of antibiotics to run it out of its home. I was miserable and it seemed to set of a horrible year. 

I have been battling with lung infections and other issues over the last year. I spent only three weeks off of antibiotics and steroids and those three weeks were not one after the other. I just figured it was a bad year for me and I put my head down and tried to fight through all of it. What happens when you run out of fight? I was always brave but there have been moments where I could not keep fighting  I was exhausted and wondered what I was fighting for. I spent almost the entire year in bed, lost my job and went on short term disability and I am actually now sick of being in pj's all the time (I must tell you I LOVE PJ'S)! My friends would go out to play and I would relive their adventures through stories and pictures but it did not always patch my heart and there were times it just kept breaking over and over again. In my heart I knew it was time to seek more help and receive the twentieth second opinion. It was time to play with the big hitters and that is what I did and I am still doing. I may not always be up to the fight but those hungry doctors have enough fight for me!

These big hitters consist of many Mayo doctors in soooooo many specialties. I move from one to the other in search of that one home run! My biggest hitter these days has been my pulmonologist. He is trying to find out what my lungs are struggling so often. He thought that the constant cough and hoarseness was due to GRED, fancy name for acid reflux. I had the little chip planted last week and there was no acid reflux occurring. Darn.....next! I always knew it had nothing to do with GERD but the only way I could prove it was going through this test. Now I feel as if he is going to be forced to look a little deeper and even outside of the box.

Remember that breathing you did when you first started reading??? Well I seem to have a case of pneumonia that loves my lungs and it wants to live there forever!!!!! You see the pneumonia is not my issue at this point......my issue is that my breathing is so labored that I had no idea I had pneumonia.  I have not been able to breathe normally for some time. I figured it was an asthma attack but nope, you can't argue with pictures. It was there right the right lung in the upper right lobe. They gave me a dose of antibiotics right there in the hospital and sent me on my way with another ten day supply. 

Everything continued to move in the right direction until Tuesday  I felt a little more tight in the chest and I started to cough but I figured it was just my bodies way of healing itself after surgery. I made it through the weekend but by Monday I could not ignore it any longer. I packed myself up in the car and headed to magical land of the hospital. Hours later the good ole doc came in to see us. Lab work looked good but there was now a spot on the left lung right in the middle. She is not sure if it is the old pneumonia trying to heal or if we are dealing with it all over again. One thing she new was that me going back on antibiotics was actually getting to the point of being dangerous for my system. We decided on three days of steroid and an opiod that actually helps suppress the cough. She looked at me and said that she didn't think she could help me and she was honest when she told us they are not prepared to deal with this kind of situation. She just wanted to make me as comfy as possible until I see the pulmulogist.

I am afraid right now. One of my two organs I picked is making me hurt and feel sad. I want those lungs working 100% and what are these spots dancing around in my lungs? Why is it so hard to breathe and why must I cough so much that I almost pee myself? I am laughing about it too!!!!!! I want to ride my bike and be able to just leave my house. I want to have slumber parties with my girlfriends and snuggle with the little ones.   Hey, maybe a puppy will help!!!!! I just want what the majority of people have, the ability to breathe. I know I will never been normal and there are some things I have to sacrifice in order to stay as healthy as possible and I am coming to terms with all of that but I want to be able to breathe. I need to breathe! 

So, tonight when you are lying down and relaxing I want you to concentrate on your breath and how it lulls you to sleep and as you drift off into dream land please send me just one of your breaths. If enough people do this maybe my lungs will fill up, kick the unwanted house guest out and give me enough energy to leave my bed. Just make sure you brush your teeth before sending me your breath! What?!?!?!?!?! I am still a girl!!!!!

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

Another Update

Sorry this is just another update and not really a post but I know it is necessary so that all of you will know I am doing fine after the past few days! 

I went in on Monday morning and was checked into the hospital for an MRI/MRA of the brain. They had me all ready and I was in position and I started to panic looking into the tunnel  He asked if I would like a wash cloth over my eyes because that tends to help people. I said we can try it and so he made it so I could not hear or see anything and boy that did not sit well with me!!!!!! They put that thing over your head that locks you into place and I told him I needed that crazy washcloth off! I needed to have a little sense of control and so this way I could open my eyes if needed. So I went into the tube and just tried my best to meditate and breathe so that my body would stay very still. OH MY GOODNESS DID IT WORK! I actually fell asleep in the tube during this test! I was very excited about that!!!!!

I checked out of the hospital and headed to the Mayo Clinic for the next procedure. I checked in and had sometime to visit with my friend Connie. Finally they brought me back, hooked me up to a heart monitor and took my vitals. I went in to the room and before I knew it I was sleeping peacefully  Once the procedure was done it took about an hour to really wake up so that I could go home. They ended up taking a piece of my stomach, small intestines, large intestines and they planted a chip in my esophagus to measure the ph levels over forty eight hours. I could only feel it a bit when I ate the first few times and after that I haven't even noticed it! I turned in the device with all the data yesterday and the chip should slough off and pass within seven days. I thought that was pretty interesting! 

Again, everyone I encountered throughout the entire day was amazing! The nursing staff put me at ease and made the whole thing a lot easier to handle. I am so thankful that I was surrounded by these amazing people who donate their time to patient care. I would have cried at least four times if they were not there to make me laugh! 

All of that is over and we will soon know the results of the MRI/MRA, biopsy results and ph level results. Of course I will let everyone know once we hear something. I do want to say thank you for all of my friends and family who checked in with me through out the process. Surgical procedures are not fun and can be very scary but just knowing I was surrounded by love and support gave me a reason to fight through all of this. It is all over for now and I am so excited that I have a small window of resting and relaxation before I head back in for more tests and procedures. 

Until them I am planting myself in Albuquerque and spending as much time with Tim as I can before I have to head back to Phoenix! He is home, I am well and nothing else seems to matter! 

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

Update

Hello everyone! This will not be a normal post from me but instead an update. I saw the neurologist at Mayo this week and I wanted to let everyone know what the next step in this long drawn out journey is. 

The neurologist was someone I did not expect! He was fantastic! I knew he would be but all of you who deal with specialist will agree that most of the time they are so dialed into their specialty and it leaves little room for bedside manner. This doctor had it all! He sat with me for an hour just talking about what is going on with me now, in the past and going over my family history. I truly left that office knowing for once I was in good hands. This does not mean he will tell me anything new but I feel as if the effort he puts into it is going to be enormous!

After all the discussing he decided that we need to get a MRI and a MRA of the brain and upper spinal cord. He also went on to explain that those little flashes I see on the outer edge of my peripheral vision, loosing peripheral vision and the sinus pressure and pain are all migraines. They are a tough kind only because they don't produce any pain and so following them are a bit harder because most people only go seek medical advice when there is significant pain. He also explained to me that due to the fact I had a parent with aneurysms it makes me more likely that it could also be a possibility for me. He doesn't think I am suffering from anything like that but we need to monitor it yearly. The white matter on by brain is actually what is left after a migraine. This is the result of having oxygen deprived in these areas. It is basically scarring and can not be reversed. 

The neurologist also is very concerned about my high blood pressure. He said at my age I should not be diagnosed with hypertension until all other avenues are exhausted. In order to rule out everything it will take a nephrologist at this point. There will be lots of tests involving the kidneys and adrenal glands in November. I have had high blood pressure since my mid twenties and no one ever seemed to question it so for me it will be very interesting to see what, if anything, they find!

Where does all of that leave us? Well, I check in Monday morning at 6:30 for my MRI and MRA at the hospital. This will take a few hours. After that we will head to the clinic for minor surgery. They will be implanting a devise in my esophagus to measure the ph level for 48 hours. They will also be taking a biopsy of the stomach, small intestines and large intestines  This is to rule out celiac disease. Monday is going to be long and exhausting but I can handle it! On Wednesday they will turn off the device implanted and it will dissolve  I will see the pulmologist on November 9th, nephrologist on November 17th and the neurologist the first week of December. 

Whew! That is a lot and I have to admit that this process is really taking its toll on my body. I will have two IV's Monday alone! I truly feel that this testing will go into 2013 but hopefully after that it will be a very healthy year! Tim keeps reminding me that with every appointment brings us closer to some new answers and that keeps me going along with all the support from my family and friends. I will update everyone through my blog over the nest few months because there is way toooooooo much to say! Again thank you all for your love and support over the last six months and in the future!

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