Life's lessons at times taught through the hard way. Through my battle with autoimmune disease I find inner strength in my life through the courage, hope and the natural discovery on what it truly means to be a survivor.
Tonight Tim and are watching a documentary on a specific rally car driver. He is sloshing in the mud and is just having so much fun! I have ridden in the race with Tim and loved every minute of it. One time we ended up on our side as we made our way through the course. Tim had told me before I got in the car that if we start to roll I am not to put my hands up and better right before I got in. I didn't put my hands up but boy did I laugh! Oh, and I didn't pee myself, hehehehe!!! There wasn't a moment of fear, only excitement of moving fast! Buddy Dennis, you will know what I mean.Tonight I told Tim that if I could go back in time and IF I didn't have Lupus I would become the first girl rally car racer and I swore to him that I would be great! That is one of the only times I have ever mentioned if...........................
Such a simple word but such a turn it makes in your life when you say it..... if. If I had more money, if I finished school, if I started a family younger and IF I didn't have Lupus. If...........if..........if..........it makes me sad when I think about if's not because what my life could have been but sad because I feel almost ashamed of saying it. You see I do not feel sorry for myself when it comes to being sick and having Lupus. I suck in that bottom lip, pull up my big girl pants and as Tim would say, "suck it up buttercup!"
Lupus changed my life at such an early age. I was such a baby when the doctor told me. I was only 22 and at that age I don't think I could fully comprehend what was going on. I didn't know the toll it would take on my body and soul. I didn't know that the decisions I made then would affect how I feel today. I was not told that the chemo that makes my immune system at least a bit better would enable me to have children years down the road. I didn't know that pain medication could become addictive. I just didn't know. I was young, having fun and no one else around me was sick. So I went on and as years went by I understood my disease a little more at a time.
Today over 10 years have went by and I learn something new everyday about my body and how Lupus affects everything from my mind to my joints in my toes.......yes, my toes!!!!! I had no idea I even had those joints there!!!!! It has been a long road and sometimes a sad road but it is a road I would never have missed. My disease does not define me but it has made me who I am today. Life is hard, days can be long and nights can be excruciating but they are who I am and to love love me is to love me with Lupus.
Today we lost a family member. No it was not a grandma or a grandpa, not even one that walks on two legs but instead the kind that walks on four. His name is Boskey and he is the fluffiest, most gentle and loving dog in the world! For you to really understand my family and how we just love our furry friends I need to let you in on a few little family stories...........
My favorite story before I was born is about a cat my mom and dad had. My mom loved the cat but my dad did not. Well, who could blame him....the cat peed in my dads shoes, ONLY my dads shoes!!!! I am surprised that cat even stayed around as long as he did! Well, my dad was in the army and was being stationed in Anchorage, Alaska. So, they packed up their belonging into one old van and starting from Ohio drove to Alaska and even brought the shoe peeing cat along. At one of their many stops to stretch their legs, grab some gas and a snack or two they opened the door of the van to check on everything. Everything looked good so they headed back out. Finally my mom realized something was missing and asked my dad if he had seen their cat. He said no and kept driving. My mom was a little frantic looking for the fur ball and eventually she looked out her window. There, right outside her window was the cat hanging on for dear life!!!!! His paws were caught in the van door! My mom told me that all she could see was his mouth moving meow!!!!!! Of course they stopped the van and pulled the kitty in. Yes, it still peed in my dads shoes!!!!!!
After all of that we still had pets as kids. The first dog I can remember having is Arrow. He was a beautiful black dog and from what I can remember, a sweet and loving dog. My first memory of cats are two cats Holly and I had, Tom and Jerry. Those poor cats!!!!!! Holly and I were soooooooo young and we would dress them up in doll clothes and squeeze them all the time! They would fight us and eventually Holly got scratched and yes, she had cat scratch fever! No, I am serious there really is an infection related to cat scratches and they call it cat scratch fever! When I told that to Tim he did not believe me at first but my mom supported my story and diagnosis, hehehehehe.
Our love of pets continued to grow as we got older. My dad married Suzette and our first pet as a family was Chelsea. Chelsea was a beautiful Golden Retriever with beautiful light colored hair. Chelsea was a sweet pup and she was with us when Jeffrey and Stephanie were born. Chelsea was an outside dog so we all got play with her in the yard. In the summer time we would run outside, throw our socks around and run barefooted all over the place. We would go back to collect our socks when we were called inside but for some reason one sock would be missing. We had no idea what had happened. We figured Chelsea ran off with it and was using it as a chew tow. That summer when my dad was planting our garden for the year he stepped in a pile of poo. It was no ordinary pile of poo, it was a pile of poo with a sock in it!!!! Chelsea ate our socks!!!! The mystery was solved and from that point on socks came off at the front door before we ran out to play.
Growing up we did not have dogs just for pets. My mom married Dave and Dave was an avid hunter. He would go hunting every winter and bring home a deer that would stock us up on meat for the year. When I was young I was so sad when he would kill something until we had dinner later that night. I would ask Dave what kind of hamburgers these were because they were the best.......he looked at me and said Bambi burger's. My sadness for hunting ended right there and my appreciation for hunting began. His best weapon was not a gun but a Beagle. The best Beagle in the world and we named her Queenie!She was such a loving pup and boy when she found a trail she never left it and this ended with Dave bringing home more dinner! At this time we also bread Golden Retrievers and we were able to keep one of the puppies because he ended up having seizures. So, his official name on his papers......Lord Seizure Lays A Lot (we called him Ceaser)! He was amazing and picked up any trick you could throw at him!!!! To this day we remember the amazing Ceasar and the fun we had!
As we all grew up it became apparent that all of my sisters and brother loved animals. My sister Stephanie is allergic to cats but that did not stop her from bringing home strays. She was not allowed to have them inside so she would go into the garage, hunt them all down from their hiding spaces and snuggle with them until her arms were so red and itchy. All of that love led her to become an assistant to a vet. Now Stephanie is married and you bet they have some cute pups in their family! Now my brother Jeffrey loved animals but not like Holly and Stephanie. He would hold them and pet the dogs but what he REALLY loved were penguins! He loved penguins so much as a kid that Stephanie drew him a picture of a family of penguins in art class !!!! He didn't just love them, they also just cracked him up! When we went to the zoo and saw penguins he would just laugh and laugh at them! It was so funny and we will never let him forget his silly love for those black and white little fellas.
This brings us back to today and our loss of another furry family member. Holly and Russ picked Boskey out before they were married. Boskey was their first child and he was a good one! They were strict from the very begging which led to no jumping, biting or misbehaving. They raised him to be the best dog ever! One thing he always did to me was as soon as I walked into the door he would take my wrist in his mouth very gently and would basically hold my hand a he would take me to all of his toys! He also was an amazing snuggler. I could spoon him and he would just lay there and let me pet him as much as I wanted. He slept with me at night and played with his Russ all the time. Boskey also would talk to you after a long day at the office. Holly would call me right before she walked into the door so I could hear him greet her and tell her all about his day. When Holly became pregnant with Lauren we all worried about Boskey and what kind of family dog he would be. He was big and could take up a whole room, how would he make room for a new little one???? The day finally came and Lauren was brought home to Boskey and they became best friends. Lauren would lay on him, pull at him, pull up on him.....anything you can think of when you think of a kid with a pup is just about right. He took it all and loved it and even shared his puppy pillow with Lauren. He was the best family dog ever. When Mia was born, again they became best friends. Boskey loved his two little best friends and was such a happy family dog. His tail curled and his hair was fluffy. I could brush and brush him and he would still need to be brushed more!
Boskey was a patient puppy and a kind soul. His last few months have been tough because of his health and the hardest decision Russ and Holly have ever had to make was made and today Boskey is at peace. He is running with no pain. He has the largest and best chew toys there are in the world and I just know he has a steady stream of treats that he just can not stop eating! He is happy and content but we are not. Boskey was our family member and we will miss him forever. We have our memories but we will not have a play buddy anymore. Time will keep moving and life will happen but today we stop right in our tracks. It is time for us to be sad and remember that fluff ball that could never be brushed enough.
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.
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.
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!
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 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.
