Lists

As a teenager I despised lists! Lists were something my mama left my sister and I when she went to work: do the dishes, make your bed, clean your room, mow the grass and so on and so on and so on! I loathed those lists! They were always a piece of paper that stood in my way of fun. Darn those lists and believe me, my mama was a tough cookie.........those lists HAD to be done! It is funny how those lists seem a little more appropriate the older we get.

Now I have lists for everything!!!! I have a grocery list, I have a honey do list, I have a list of things I need to talk to the doctor about.......you get my point, my days are full of lists! There are times I resent the lists strewn out in front of me but it is necessary. Lupus demands a lot of lists! So many lists and not enough time in the day to finish them off.

One list of mine that has not gotten older and has not burdened me is my list of things I want to do in this life. My list consists of places to go, food to eat, activities to try and everything else you can think of in between! It's these lists that keep my spirits up and these lists give me something to look forward to. Here are a few items on my life list today............

Dance in the rain

Run through puddles and not think of the mud

Kiss in the rain

Snuggle in bed with my husband and child

Get lost in New York

Visit Germany and see where my life actually started

Skydive

Go up in a hot air balloon

Scuba dive the Great Barrier Reef

Backpack through New Zealand

Drive through Africa and listen to the lions while I fall a sleep

Have all of my friends from around the world in one room at the same time

Have a song written about me and my silly ways

Camp in every National Park

Be a mom

Be a wife

Be a best friend

Shop in Anthropology and NOT worry about how much I spend

Spend a weekend shopping for antiques

Eat anything I want and not worry about my wobbly bits

Be the best sister I can possibly be

Be the cool aunt that everyone wants to be around

Have a puppy named Sarah 

Remember for one moment what it felt like to not be sick

Have the comfort of unconditional love

Don't worry about dying

Don't worry about anything

Taste the best cupcake in the world

Chase a kangaroo

Hold a koala bear

Swim with the dolphins

Watch sea turtles make there way out of the sea

Ride in a helicopter over the Grand Canyon...............and so on and so on!!!!!!!!!!!!!

I could go on and on forever! That is the best part of life......your ability to live it and choose what it consists of. Each day only has twenty four hours. Hopefully eight of those hours are taken up with snores and amazing dreams! Those twenty four hours in the day will soon be yesterday and the lists of today become the list of things we just didn't get to. My life list will not be pushed to the side, instead it will be brought forward everyday. I will add to it the older I get and I will not look back to what I didn't get done yesterday but instead I will look  forward to the adventures of tomorrow.

Solar Eclipse

I know that I use a lot of stories and analogies while writing my blog. There are so many aspects of my disease that I don't even understand so how can I expect others reading who are healthy to understand? Well, you tie it into something basic that everyone can experience so that they can grasp a little bit of what you are trying to say. While doing this I have found that I also grasp the complexities of my auto immune issues through this process. It is a win win situation in my book!

I remember in elementary school the teacher was explaining to us what a Solar Eclipse was. I can remember her telling us the moon is passing in between the sun and the earth. We made this contraption out of a box in order to see it because you can not look directly at it. I was so excited to see this image of our sun and moon! When it happened I remember thinking to myself how beautiful it was! There was this halo surrounding the moon and it looked magical! We continued to watch as the moon moved through the path between the earth and sun but I will never forget about the angelic halo surrounding the moon.

Today I am having a solar eclipse kind of day. It is shot day and for some reason (lack of sleep) it is a very uncomfortable one. The pain is all over and there is a burning sensation when I move. I have had a lot of inflammation in the lung area over the last few months and so that delightful medicine has seemed to settle in the muscles surround my chest. I can still breathe but it feels like you have coughed for several days causing a bruised rib, that is the best way I can describe it. The legs are very achy and my ability to go up and down the steps is limited at this point. Thank goodness the bathroom is upstairs with me or that could lead to a whole new set of problems! It is a dark day....not depressing but dark none the less.

I think of me and who I am and I picture the glowing sun! I love life and everyone who truly knows me can tell you that. I love everyone in my life and try as hard as I can to make sure their lives are a bit brighter when I am around. I light up the minute Tim gets home everyday or calls me to tell me he loves me. Even with Lupus I still can find joy and light in everything I encounter. However, I have an arch enemy........methotrexate! 

This monster loves to rob light out of everything it touches. It causes pain and sadness as it moves through the body. It is my dark moon passing in front of my sunlight. Does it fully take away my light...........NO WAY!!!! It just passes over leaving a little ray of light surrounding me. It is my solar eclipse.  Yes, it will pass over fully in a day or so and the light within me will get brighter and brighter and I will be able fight harder and harder against this disease. For now I will focus on that little halo of light and remember that even in the darkest moments of my disease there is still hope and even the smallest amount of light can guide me through this storm.

Christmas in July!

Ho ho ho.........Merry Christmas........in July! 

For those of you who know me you also know that I love the holidays! I especially cherish the time from Thanksgiving up to the New Year! The food, family and festivities truly warm me up from the inside out......AND here in the desert it is finally cold! 

There are certain traditions I have for the holidays. I HAVE to bake dessert and take it to Thanksgiving dinner. My mama always taught me to NEVER show up at someone's home who is hosting dinner empty handed! I have to put the tree up the day after Thanksgiving.......oh, who am I kidding, as soon as Tim lets me put it up it is up and that is anytime in the month of November and James, Santa does come through and throws up in our house! I am a lucky girl to have someone so tolerant of my quirky habits:-) I MUST bake Christmas cookies and a LOT of them, mmmmmmmmmm!!!!! You see, these are not traditions I have just drawn from a hat and chosen to do, like any tradition I was taught this from an early age. 

My Lupus tends to really restrict my activities. Tim is very vigilant when it comes to these limitations. Tim's mom and dad and all of our friends and other family members watch over me and the first sniffle or slow movement I make I am told to relax and rest. I think Christmas is the ONLY time of the year I can get away with anything! I love it so much and everyone knows that! I will look at them with those sad Lupie eyes and stick that lip out and BAM, I can bake as many cookies as I want! No wonder it is the most wonderful time of the year! 

The real reason I love the holidays is that it brings everyone together. No distance is to far to travel to see your loved ones. No one is sick during those moments and everyone is united through celebration and just being together. I think of Christmas Eve dinner in Pasadena. After everyone is there the dinner is served and through low dim lights and candles burning we all come together for one moment. We say the family prayer and I always look around the table at everyone. I see Tim and his brother Chris joking about when they were kids. Tim's dad is laughing at the boys and Tim's mom looks at them and is so happy to just have them together in this one moment. It may have been a tough year but in that moment it feels as if this was the best year ever! 

It seems as if most of us hang on to that feeling through the beginning of the year but sometime in the spring we all tend to loose it and forgot what really is the most important thing in our lives. It isn't the doctor's appointments or the new medicine you have to try. It isn't about the sad time you have to spend isolated from the rest of the world. It is about the most simple concept and feeling you and I have.......love. We love our families and our friends and today we need to remember that the love we feel for them is not something you celebrate once a year around a candle lit table. It is something you celebrate everyday of the year for the rest of your life. You do not need a tree and carols to bring you back home. All you need is a little bit of love.

Paint your nails red!

It is so hard for me at times to make it through a rough day. I feel less than adequate and at times I feel so defeated by life and by my own body. I look around and I am surrounded by pillows, covers, movies, water and medicine. Minus the medicine it sounds like a great Saturday night in! Well, lately this is an everyday sight for me when I open my eyes in the morning. So the question remains.....how do you get through this time with an ounce of dignity and self worth????? I have figured out this time consuming question for all of us...........PAINT YOUR NAILS RED!!!!!

I love my magazines! I love everything from Real Simple to People and everything in between! Especially in the summer you see so many feet in these magazines! Everyone is wearing a little less and showing off their feet by showcasing them in beautiful sandals. I am instantly drawn to this bright spot that graces the pages......they almost all have red toenails! Is that the key to their glow????? No, that would be LOTS of airbrushing but still when I see red toenails I think of something happy. I think of swimming at the pool, spending time with my sister and most of all I think red nails look sexy!

There is no blushing permitted when reading!!!! For some reason red nails make me feel more like a woman. It is so hard to feel good about yourself all the time in this life we have been selected to live. I find nothing attractive about throwing up after new medicine has been introduced, recovery after surgery and the tears that just can not stop from spilling over. BUT I do feel better going through all of that with a little grace and red nails! 

Fear

When I was a kid I would sneak and watch scary movies telling myself that my mama was wrong and I was old enough. I would watch them and almost jump out of my britches during those silly scary moments! It was so much fun! What I didn't take into consideration is how I would feel after watching the movie. I would lay in bed and every shadow was a ghost, every noise was Freddy Krueger scraping his nails and every dream was a nightmare! Holly, my sister, and I shared a room and I would sneak into her bed at night just so I would not be afraid. Yes, I also logically told myself that she is now closer to the door.......the ghosts will have to take her first! Sorry Holly, I love you! After all of this I still watch scary movies and yes, I still run from the bathroom to the bed room because the ghosts are chasing me, I just know it!  

For me, fear is not just something I feel after a scary movie, it is a constant feeling that can grip your mind and bury itself in your soul. For me, running from fear is not as easy as going from one room to the other. I can not escape the fear that haunts me when it comes to my disease. Instead of seeing ghosts I feel a new pain or a new sensation that you know is not right. I find myself asking questions on my Lupus forum just to see if anyone else experiences these new feelings. My biggest fear is that something will go wrong internally and it will alter my life even more. I am afraid of my kidneys failing. I am afraid I will have a stroke because my blood pressure is high even on two medications. I am afraid that one morning I will not be able to dress myself and I will become even more dependent on my loved ones than I already am. I am afraid that some loved ones will not be able to handle the future with me and the elephant in the room called Lupus. I know, these are a lot of things to be afraid of but they are real for me in that moment.

Fear can be paralyzing and can lead to a more secluded life and mental state. This can not only debilitate you emotionally, it can change your life in a physical way. So, how do we deal with this fear? This is not only a question for others who suffer from an autoimmune disease, it is a question for everyone who at one time or another has let fear change their life. I have learned to truly take responsibility for what I am feeling. The first thing we have to do is acknowledge that fear exists for us. You can not do this by just mentally thinking it......you really have to do something to express it. You can write it down, tell a friend or discuss it with your doctor. For me, it is my best friend and partner , Tim, who helps me navigate through my fears. You will be surprised how much has been lifted off of your shoulders just by telling someone what you are feeling. It allows you to again move through life and get on with your day. Believe me, you will still have moments where fear stops you in your tracks and that is ok but knowing how to deal with fear at that moment is a life saver!

While laying in bed as a kid I would run though my mind all of the special ways I could fight off the ghosts in my shadows. They were my bag of tricks and they would save me! Today, I have new tools and dealing with fear is one of the most important. So, next time you are afraid just think of your special bag of tricks you have. You do have a special tool in your bag and it is just simple communication! Just pull it out when you are ready and fight your heart out and you will see that fear is just as self created as those ghosts in the corner. 

Summer

Growing up I absolutely loved spring time! The grass was turning green, you could play outside without your coats on and the days started getting longer and longer. As a kid what is there not to love about that time! Most of all I loved counting the days until school let out for the summer! Spring time initiated the global countdown for long nights chasing lightning bugs,eating your ice cream so fast so it would not melt all over you and just laying in the sun with no shoes on! Summer could not last long enough for any of us. Summer was the first love I have ever had.......ok, ice cream and cake, those were my first loves!

As you get older the outlook on summer changes. It seems more of a pain than a magical moment in time. Work calls on you everyday and those kids you love so much.....well, you have to pay someone to take them and care for them as much as you would. Summer is just not the same and never will be. Those care free moments have slipped away and the burden of being a grown up hits you like a ton of bricks!During summer I just pray that the air conditioning in the car will at least keep me from sweating through my clothes! 

For those of us with autoimmune diseases summer brings on another heartache......the sun and heat! You see we suffer from a diseases that makes being in the sun literally painful and I don't mean from a sunburn! Our bodies tend to freak out when it comes to, well, anything! We have to take such potent medications that they change the makeup of our system that was going haywire to begin with! So, with the diseases itself and the medicine treating the disease summer is not a match made in heaven for us anymore!

This Fourth of July I really wanted to feel normal! For those of you who know me that can be a far stretch, hehehehe! I wanted to try to enjoy myself and do everything that everyone else is doing. I wanted to lounge by the pool and stay out until it was dark for fireworks! I wanted to eat a blue snow cone and watch kids play everywhere! I wanted to feel that love for summer again! Well, I did it! Before you get to excited let me tell you what happened afterwards. 

The first thing I did was stay up so late on fireworks night and watched the most amazing fireworks! The kids were oooooing and ahhhhhhing! There was so much joy in that moment and it truly reminded me of being a kid. Well, the next morning I was exhausted. I took my medicine late and the effects lasted all day from taking it so late. I slept off and on and I knew shot day was going to be bad. Instead of dwelling on it I decided I would perform my next summer task........enjoy the pool all day! I lathered myself up with SPF 80 and floated on a floaty all day! I reapplied every hour and just relaxed in the water. One thing I forgot to mention before the pool idea was that I have medication that reads right on the label.....STAY OUT OF THE SUN THIS MEDICATION COULD INCREASE THE ABSORPTION RATE OF THE SUN! As the night settled in I took a shower to wash the chlorine off and you know what is coming next........the sting when the water hits a fresh sunburn! How could this happen when I applied sunscreen every hour and it was SPF 80???? I guess those warning labels in the medication are really there for a reason:-) Not only did I have a sunburn but my body itched and little spots popped out and the exhaustion rate tripled at this point and yes, shot day was a pain in the rear!

My love of summer over the last ten years has truly changed. I now get the summer blues. I know I can not go outside and play with my friends. I know that I need to wear a long sleeve shirt when it is 115 out and this can make me so sad. I see everyone's vacation pictures and I am jealous of the fun in the sun. I want to go to the beach and I want to have enough energy to play the next day and the one following it but I can't. I am not admitting defeat, I am just accepting what my abilities are at this point. Summer lasts only a short period and I am thankful to live in a state that offers year round beautiful weather. In the winter it gets cool enough to actually feel comfy in those long sleeve shirts in the sun and THAT is what I look forward to! Tim always fills up our winters with tons of camping and outdoor activities because he knows the heat and the sun and me do not have a good relationship!

Now the question remains, what do I do with myself for the next three months? I have a challenge for all of you. Yes, I mean all of you......even you without an autoimmune disease! Get out! It is very easy to fall into the hum drum of staying indoors and avoiding the day all together but that is not healthy for any of us, physically or emotionally. My goal for myself is that I will do a new activity every week! This week I went to The Albuquerque Museum! I was indoors surrounded by gentle quietness at the same time as being surrounded by people. It was wonderful and I felt so much better afterwards! This next week I am going to go to the zoo! Yes, it is outdoors but I will go very early and make my rounds outside when the sun is just staring to warm up and then when the sun comes up explore the exhibits inside! I encourage all of you to do the same thing. Lets fall back in love with summer and stop counting down the days until winter. Lets go back to being kids and looking forward to the long days! Oh and one more thing you must do every week is pick up an ice cream cone and see if you can finish it outside before it is all over you!

I'm not ok!!!!!!!

There are moments in my life when I just want to jump out of my car in the middle of the freeway and yell at the world! I want to tell the world and everyone in it to just stop and let me get my bearings on my life. I want to scream at everyone that I am not ok and I need you to know that! I want to scream that I have a disease that has changed my life and I need to catch up because I feel like I am constantly falling behind. I want to revert back to being a toddler and stop my feet, throw things and just slam a door! I need to get it out and I need to be heard!!!!!

Lupus can be a very lonely and angry disease and it can make you feel so isolated. I am always surrounded by love and support but even with all of that love and support loneliness and even anger tends to creep up and grip you from behind with no warning at all. Everyone tries to understand what you are going through. They ask questions and I am always happy to answer them but afterwards it can be hard. You realize that even thought they want to know they will never feel what it is like having Lupus. You are alone with your disease and angry with your disease!

This loneliness and anger can leave you with a lot of questions for yourself with no answers. The doctors can not fix this with a magic pill. It is just something you have to blindly feel your way through. We have to learn to cope with this loneliness and this anger on our own and in our very personal, individualized ways. I can do it and you can do it! We just have to remind ourselves that this loneliness and anger does not hold on for ever, it tends to let go and may creep back up on your from time to time. 

With all of that said, feel free to stomp your feet, throw something (preferably soft) and slam a door! Get angry and feel what it is you need to feel! Go back to being three! It really does help! It helps the frustrations, loneliness and anger. It allows you to be heard! When all of that is over and you have slammed enough doors and yelled as loud as you can remember to tell yourself that this too shall pass and happier days are ahead and it is time to pick yourself back up, dust off your shoulders and move along.