Your Mark

Most young adults start their lives the day they leave the their parents home. The apron strings are cut and you are ready to spread your wings and fly! You leave with this feeling of empowerment and with this independence that has been trying to reach the surface over the last four years. It is time! It is time to make a life for yourself and leave your mark on this world. Now the question is........what will that mark look like? 

Everyday choices are put in front of us. Do I run that red light so I can get to work on time or check in a little late? Do I smile at strangers or just put my head down and get through? Do I stand up tall in the face of horrible circumstances or do you let things defeat you? These are all choices we will be faced with everyday. You will run late, you will meet strangers and have hard choices thrown your way. Now is the time to decide how you will answer these questions posed to you.

Those of us who are not well and have accepted a life full of long struggles knows what it is like to have that cut short or altered in some way or form. It is terrifying when you realize the choices you wanted to make or the mark you wanted to leave on this world may be challenged. We answer that challenge by not expecting the world to adjust to us but to adjust ourselves to the world.

One idea of mine that has been challenged is the idea of a family. I have always wanted to be a mom and I truly thought I would make my mark through my children. I pictured my grandchildren and great grandchildren telling stories about their crazy Grandma Danica and how she loved to dance and laugh! 

When I was first diagnosed with Lupus the doctor's explained to me that this may complicate things as I got older. I really needed to consider starting a family younger than I had planned. At 22 years old I was still a baby and I was not ready to have a baby of my own! I wanted to experience things and make a wonderful life  full of opportunity for my future family. I wanted to graduate college so that I would inspire my children to reach for even more than I did. I wanted to have a family born into real, unconditional love. So, I waited.

Believe me, I am not sorry for waiting! I would not have wanted to be anyone less than what I am today for my family. The consequence for waiting was that I grew older and unfortunately have grown a bit sicker along the way. I am not sad that I may not have a child of my own. The question posed to me at this moment is how to move forward. What mark do I want to leave on this world when the circumstances have changed and choices are a bit different for me?

I will leave a mark of love! Love for my family and love for myself. You really have to learn to love who you are when it turns out to be nothing you expected. I have two beautiful nieces that love me and will know me and hear my story. I have a family and so many friends who would do anything for me and anything to make this life a bit more comfy along the way. I have a Timmy! Sorry ladies, there is only one Timmy in this world like mine and I snatched him up! This is enough for me and enough for my heart to feel extended every moment of everyday!

So everyday I wake up and I look over to see that yes, the sun has come up again. It may have been a tough night, day or week but it is a new one! I am so thankful for this because I am not sure what tomorrow holds or how many mornings there will be in any of our lives. I take that feeling and I want to share it with the world! I will smile at everyone I meet and say kind words to strangers because you never know, you may have been the hello that changed their day. I hold my head high while I walk even if I am walking very slow. This will be my mark on this world and yes, it will be shaped like a sock monkey!

Please.....go back to the end of the line!

I remember as a kid I would hate those words.......please, go back to the end of the line! Everyday I was sent back to the end of the line for cutting or talking to much, I know that is hard to believe! Regardless of the reason I knew I had to start all over and I was not going to get to my desk first or sit in my favorite seat at lunch! Fast forward twenty years later and I still hear that phrase all of the time! Ok, maybe not those exact words but it is still starting all over again no matter how you phrase it. I have heard it regarding a job......I am sorry but after the tenth interview we are just not hiring. I have heard it from people in my life but most of all I hear it when it comes to being sick. 

I started the arduous process of the Mayo Clinic this week. Please, do not get me wrong, I am so thankful to even be able to go there and look for new answers to something that has followed me for over ten years. When you walk into the doors of a new doctors office the first thing they do is look at your file and try to find someway to disregard the efforts of the previous physician. So right from the start the regime you have been on for years must me thoroughly tested and tweaked a bit so they can put a mark onto you and your file that will follow you from here on out. That pushes you back to the very beginning!

After hours or even days of testing your blood, urine and sending shocks into your brain and extremities you go home exhausted and in pain. The next day or even weeks after this disturbance you still feel the effects of being exhausted. The one thing that changes is your outlook. For a moment in time you think to yourself......maybe those doctors were wrong before and I don't have to shoot poison in my veins every week! Maybe I can live a normal life and start a family and contribute to this world! Then those thoughts are shattered. The new doctor has no idea what he or she is looking at and nothing has changed and you still go home and prepare to feel sick for two days out of every week. You will eventually get so tired that you feel forced to go get another opinion. In these cases it is not a second opinion or even a third it is like the twentieth opinion!!!!! The hope will build up again and you will be told to please, go back to the end of the line and start over. 

Please understand this is not just my thoughts but the thoughts that every individual who has a disease or illness will face at one time or another. For me, yes, I do feel this way often and I know my loved ones also feel this way. The get very excited only to be told that there is no change and the questions you have regarding your loved one will go on being unanswered. I truly feel it is just as hard to love someone who is sick as it is for the patient who actually is sick. 

Tonight, I am in the stage of feeling hope! I am probably receiving the best care at the best facility I will ever have access to. I truly feel that if the previous doctor missed something they will find it! I believe I will no longer have to be on chemotherapy! I believe in the hope that my loved ones are feeling tonight. Tonight I am thankful for that hope. Even if it is shattered in a month or so I will not give up. I will follow that feeling of hope through out my entire life. I will rejoice in this hope and hold onto it when I am discouraged because I know it will find me again no matter where I am at or how sick I become. As long as I have hope I know that tomorrow is a new day and I am thankful to see the sun rise in the morning.

Stumble and fall!

Education has always been very important to my family. My mama was unable to go to college and graduate because of us girls. She took night classes here and there but her real calling in this life was being our mom and making sure we had everything we needed. Just because she did not go to college does not mean she took our education lightly. Holly and I both had to get good grades and if we even got a C in a class we were grounded! She set very high expectations for us and in the end it paid off. Holly now has her Master's Degree in Psychology and I have my Bachelor's Degree in Accounting! Her persistence truly paid off for my sister and I!

I am an educated adult who went after one of the most challenging degrees. I had to write papers, analyze the stock market, make speeches and understand every in and out of accounting! I have a sense of pride that I could never begin to explain to you! So, the next thought leaves me perplexed at times.........why do I feel so dumb at this point????

One of the more frustrating symptom's of Lupus is brain fog. I must say, I have been suffering and struggling with this over the last six months........probably over the last few years! I am forgetful, loose things and just stumble on so many words. This is actually very common symptom affecting the central nervous system for Lupus patients..........so common that 70 to 90% of us will suffer from it at one point or another in our life with our disease. Just because it is common does not make it any easier to handle.

Forgetfulness is very common with aging or even very busy people. Some of you will shake your head and say yes, I have dealt with that but for me, age 33, it is debilitating at times. I will forget everything from a name of someone I have met numerous times to looking at objects and forgetting what they are! I will but the milk in the cabinet and keys in the fridge.......not on purpose! The last time I did laundry I ran a whole load of clothes through the washer and when the washer stopped I realized I had forgot the clothes! I know this is frustrating for Tim but it is exhausting for me.

The inability to form words from my thoughts is difficult for me to grasp and understand. I will have a complete thought, know what I want to say and stumble through the entire thing when I am expressing my thoughts. This is what makes me feel the most inadequate. There are even times where I will avoid talking on the phone or seeing friends because my flair is causing me so much trouble and my brain fog is out of control! It is not only heartbreaking for me but it is so embarrassing and it makes me just want to curl up in a ball and cry at times but as I have mentioned before there is no time for tears when fighting Lupus!

My last year in college was the most difficult for me. I believed that I was suffering from a very common illness SENIORITIS and was just ready to be done with school but I knew it was so much deeper than that. It was very hard for me to focus, to retain information and to form my sentences in an orderly manner while taking tests. Tim can tell you that I spent almost all of my final year in college crying! I had convinced myself that I just could not do this. I even went as far as calling my advisor to see if I qualified for a degree in a less challenging field. Of course the answer was no and if I wanted to graduate it was time to just get through it.  Ahhhhhhhhhhhh............how do you just get through it when this is your life?????????

Finally I decided I was not going to have this break down and I was going to do whatever it took to finish school. I went to my doctor and explained everything! He informed me that this was very common and will come and go through out the rest of my life. He did tell me that we could look into some medicine to help me calm down and not get so worked up. That is when we deiced to take Paxil. Yes, it is an antidepressant BUT remember that it calms the brain down which in return allows me to concentrate and retain a little more information. I was very hesitant but threw my hands up in the air and told my doctor lets just give this a try.

In the end I graduated from college on the target date when I was 31. Yes, it may have taken me longer than most but the fight I had been through made it worth it!  

I still struggle on a daily basis with this fog head but I feel better knowing that it is actually "normal" for someone like me. I am still very self conscious when I talk to others and the memory issue comes and goes. At home I have certain rituals that help me. The keys go in the drawer at the bottom of the steps. Phone chargers stay in the bedroom. Just making small changes like those are very helpful to me. I know my brain fog will come and go and there will be days I struggle more than others but I need to remind myself that I am intelligent and the things I have to say are worth listening to even if I stumble and fall a few times on the way!

1lb....2lb.....3lb 4!!!!!!!!!!!!!

I HATE PREDNISONE!!!!!! What is really bad about this drug is that it does actually make you feel better but the side effects are horrible!!!!!! When I am on prednisone I will get hot flashes in the middle of the night and actually sweat through my clothes......yuck! I never feel full and the water weight is terrible!!!!!! One thing I have learned about medication is that most of the time the best ones for your disease are the most horrible for your body. Oh, and everything causes cancer. 

One of the largest adjustments I have made over the years is the weight gain and drop from medications all the way to being caused by the disease itself. I have had to be on prednisone off and on since the beginning of the year. Since January I have gained at least 15 pounds! I feel like a walking water ball that sloshes back and forth when you shake it!!!!! I imagine my body makes a blurping noise whenever I go up and down the steps.......blurp......blurp......blurp!!! Tim will tickle me and make me laugh and the whole time I am yelling.......you are tickling my wobbly bits and that is NOT a sexy term I have made up!!! So between the blurping sloshy sound and the wobbly bits that wiggle and jiggle how is anyone supposed to have a positive thoughts about their body????

This weekend was Tim's going away party and we live in Phoenix Arizona. It is sooooo hot here!!!!! Everyone claims it is a dry heat BUT 125 degrees is HOT regardless of dry or humid!!!! I grew up in Ohio and so I understand humidity and I have been in Phoenix for 10 years. HOT IS HOT!!!!! Back to my story.......I was trying to decide what to wear to the party and I tried on shorts after shorts......capris after capris.....pants after pants and so on. NOTHING fit and if it fit even a little bit it was uncomfortable after a very short period of time. It was miserable and internally humiliating. I didn't want to by anything new but I also knew that sock monkey pajama pants were really not appropriate for a party. I compromised with my body......if you suffer through a few hours in shorts that pinched then I could change into pajama pants when the sun went down. That is what I did! When I put those pajama pants on my body sighed in relief.....it was comfy!!!!! 

I know what I need to do is kick up the activity level and eat healthier ESPECIALLY when I am on prednisone BUT, as anyone with a chronic illness knows, there are those days when you would love to be doing any type of physical activity if it just did not hurt as bad as it does. I have moments when just walking downstairs to the kitchen hurts so bad that I choose to stay upstairs in my cocoon all day and eat very accessible foods (cereal). I don't want to stand up for long periods of time to cook. There are times my joints on my fingers are so swollen and sore I can not even grasp the steering wheel of my car....I am not going to cut up fruits and veggies! 

One thing I can do to make a positive change in my life is to accept that there will be times when weight is put on and times when the weight just falls off. Regardless, I can change the way I perceive my body. People who look at me may not feel the same way. They may say that I am toooooo skinny or I have put on the pounds and I have to remember that is their issue and as long as I know that I am ok and that I am beautiful just the way I am.....no one else can make me feel bad about myself except me. So, tomorrow when I am deciding what I am going to wear I may decide on pajama pants because inside they make my body sigh with comfortable relief!

My Love

Today I wake up and I look around. It will only be a few more days until Tim relocates to Albuquerque for six months. He is almost all packed and the only thing left to do is to go through the garage and make sure we have all of his mountain biking and motorcycle gear ready to go. Everywhere I look I can see where he is already gone and have started  missing him even before he has left.

I know Tim and I refer to each other as our better halves but Tim truly is just that....my better half. Tim and I met almost six years ago. We met through a wonderful mutual friend who needed Tim's key in order to collect Tim's mail while he traveled for a few weeks. I knocked on his door and the next thing you know we were inseparable! Tim has become my best friends, my rock and truly my soul mate and I am not one to believe in soul mates!!!!!! He knows how to make me laugh at just the right moment. He holds me so tight during the moments of pain. He is the love of my life. How do you say good bye to all of that and leave your love in a new town?

I know how. You never say goodbye because I will be seeing him soon! I will make sure that when Tim is gone he knows just how important he is to me. He saved my life and my heart many years ago. The love and support he gives me every day must be given right back to him in this case. I need to be his rock and his best friend while he is gone. You see, Tim is taking this job for our future as a family and he is making the largest sacrifice in order to do that. Everyday he needs to know how thankful I am for the sacrifices he is making today for our tomorrow. He amazes me and makes me feel so safe and secure in a world that seems to be out to get the two of us! 

I think Tim's biggest fear at this point is me getting sick and me not taking care of myself while he is gone. Well I have news for him........I am going to continue to exercise, go to yoga and I promise to eat my veggies!!!!! Maybe I will Skype when I am eating so his mind can rest at ease. I will be healthy and in disease fighting condition by the time Tim gets home!!!!! This is all he ever asks of me and how can I say no. I will take care of myself so I can extend my life and to make sure I am here for many more happy memories. I will take care of myself so that in the future, when we are ready, my body will be ready to give Tim and myself the gift of a family. Again, this is all he asks. 

All he ever asks of me is always so small compared to what he gives me. I am so thankful for Tim and if you all were able to meet him your life would never be the same. He can change a mood with his smile. He can change your life with his friendship. The love he gives out is unconditional and beautiful. Past the blue eyes, blonde hair and cuteness that can not be measured is a man I could have never even imagined for myself. If I would have told you six years ago what my ideal mate would be.......I would never have come close enough to even describe half of Tim. So, when I say he is miracle, he truly is!

So, Timmy, I love you more than I could ever show you. I will spend a lifetime loving you and supporting every choice you ever make. It is my goal in life to get as healthy as I possibly can for myself and for you. I promise to eat my veggies when you are gone and exercise six days out of the week. I promise to be there for you when you are sad or frustrated from being away from home. I promise to do the I'm a Little Teacup song and dance on Skype just to make you laugh on a bad day. I promise to jump in the car and make the journey to Albuquerque when you need me the most. We may be hundreds of miles a part but I promise I will not be far at all. You see, you are half of me and that half you will take to Albuquerque. I am half of you and that half will stay here in Phoenix. We will never be alone and love will always be right next to you and me through this journey because the half of each other we carry will always make us whole<3