Friday, March 2, 2018

The Art of War

Usually the goal of a war is to win the battle. In the land of Lupus there is no winning the war. you can try to subdue the enemy all you want but ultimately the enemy is on a suicide mission to take over under any means necessary. Imagine your body as an army. Your white cells are the white knights sent to protect your body from evil, except one day something happens. A potion is given to the army. Subliminal messaging if you will, sent to reprogram them to think differently. To think something other than I must protect this vessel. The army is then reprogrammed. They are then taught the vessel is the enemy. So then the war begins from within, Attacking the new enemy and causing destruction. There is one flaw however in the reprogramming. The King was not reprogrammed. He is the only one who knows how things should be instead of how they are. Thus the anarchy begins. The army starts attacking their own men all the while proudly pronouncing to the king "We got another one Sire!The king is perplexed. What are these men doing? Why are they killing their own people? The casualties begin slowly at first then pile up rapidly. Welcome to Lupus.

You realize at a certain point things will never be what they once were. The pieces of your previous life become the casualties.  Loss of relationships, jobs you cant do because of physical limitations, loss of the ability to have children due to medications you cant control.  These are all of the things lupus took from you.   It all becomes like a war zone. Blown up pieces of your old life scattered around you. You become weary. Tired of fighing the same never ending war year after year. You wave the white  flag out of desperation. You finally give up. You give up any power you think you have. This is when the healing begins.

Isabel Allende once said "we don't even know how strong we are until we are forced to bring that hidden strength forward. In times of tragedy, of war, of necessity, people do amazing things. The human capacity for survivial and renewal is awesome."

As bad as this disease is and as much as it will take from you it will give you things and teach you just as much. After almost 20 years with it you begin to feel like you are made of steel. You learn to ride the waves. You also learn never to let it take you under. You fight back to somehow get back to the person you once were. Maybe we never stop striving to get back to the person we used to be. I know I never did. I refuse to let this disease take me out. Sometimes the will to fight is stronger than anything else.  The human spirit is a hard thing to kill.

You mourn the loss of your previous life and then you just keep going, Through the good, through the bad, through it all. You find life again. You learn to live again and you learn to take care of this body that has a mind of its own. Eventually you show it whos boss. There is life after Lupus, even if in the beginning it seems like there isn't.

Monday, February 19, 2018

I've got a date with destiny

There are dates in your life that will always stick out to you for one reason or another. For me one of those dates is July 29th, 1998. That was the day my life changed. No One  prepares you for life with a chronic illness. Its one of those things that doesn't come with an instruction manual. They say write what you know. What if most of what you know comes from being sick? I've been sick almost 20 years. Guess you could say I have an unofficial P.H.D in being a professional patient. I know which veins they'll get the best stick from for drawing labs, which hospitals have the best food, nicest nurses etc. Every story has a beginning most of them starting with something great like once upon a time, or it was a dark and stormy night. Mine begins with this one time at band camp. Ok, it wasn't band camp but it was high school ROTC. Up until my sophomore year things were normal or about as normal as can be for a 15 year old girl in high school. It was over the summer during ROTC camp that symptoms started appearing. It started with joint pain, Then the unexplainable rashes, eyelids and legs swelling. After 6 months of doctors only treating symptoms I was finally sent to a specialist who figured out I had SLE with kidney involvement. Within 2 weeks everything changed. my life became chemo and steroids, prednisone to be specific. Ask anyone whos taken it, its the best worst drug that you can find. It helps tremendously however the side effects are wicked. Includes fun side effects such as a case of the nonstop munchies, mood swings, in my case a bone disease called avascular necrosis and lets not forget the steroid high as I call it. You feel like superwoman. I loved it. I could clean the whole house and felt like I had energy for days. I also don't know when to rest. So after a short burst of energy then came the crash with the crippling fatigue. Something they don't tell you is the fatigue never quite goes away or in my case it didn't.  It feels like having the flu and running a marathon at the same time.  Constant exhaustion no matter how much sleep and rest you get. I've had points in time where I felt great and had no fatigue but it was  a delicate balancing act of eating really healthy, getting enough sleep, exercising and avoiding all forms of stress. At least that is my trifecta for feeling good. With Lupus there is no solid equasion like E=MC squared. At the very least its predictable in its unpredictability. I had 7 years of being sick and in a flare up, followed up with 13 years of remission . No One prepares you for remission either. Its a weird feeling. You are lucky because you have survived the storm so to speak. You've made it out the other side. There's so many emotions that go with it. Relief because you are out of the worst of it, slight guilt because you see others with your same disease who are fighting day in and day out just to survive and here you are virtually normal. However we all carry the same scars. Members of a fraternity no one asked to pledge. Most days you are striving to hit that happy medium where your meds are working and you feel great. After almost 20 years you gain some experience and knowledge. In the beginning I didn't know anyone with my disease. It was a number of years before I started connecting online with other people that had what  I had and answered with the phrase "me too" Its a comforting feeling when someone says "Me Too" Its the universal phrase for you aren't alone in this.  If I could go back in time and tell that scared 15 year old something it would be hang in there. It gets better and you will weather the storm. You will survive this. The dictionary defines the word Hero as a person who is admired or idealized for courage, outstanding achievments or noble qualities. I don't know about you but most people who are heros didn't ask to become one. They were amazing people that survived extraordinary things and did what needed to be done. I have a list of hero's but that's another blog for another day. I fought against the idea for a long time about being a leader and being the example for others. But the universe had other plans as it always does. I found myself meeting person after person who was newly diagnosed and giving my experience and helping any way I could. So here I sit almost 20 years after hearing the words you have lupus. I always wanted to help people who were newly diagnosed. I guess in a way helping and being there for people so they wouldn't have to go through what I did. Fighting the good fight alone without a me too person. I had my family and friends so it wasn't like I was completely flying solo. But not a "Me Too" person. I guess my advice to the newly diagnosed would be  Hang in there. Find your tribe so to speak. People who just get it. Find something you like to do that you can do when you are resting and have downtime because you will have lots of time when the bed is your best friend. Weather it be television or sewing, writing, playing a game etc. Just something to distract yourself. Splurge on a good pillow and blanket. Being comfortable is the best when you are feeling like crud. Learn to rest. I'm still learning this lesson because most of the time I don't know when to stop. But learn to listen to your body. Embrace the good days when you feel good and make the most of them because there are going to be days when you feel like you've been hit by a truck. On those days rest but on the good days be aggressive and do the things you feel you can when you have the energy. Its rough I'm not gonna lie. There are days where its not all kittens and unicorns and rainbows. Those are the tough days. Just rally your tribe around you on those days and hang on and ride the wave till you feel good again.  I'm not an expert by any means. I don't have all the answers.  I'm just a girl with a disease called Lupus  fighting the good fight every day. Eventually you find your tribe and you find your rhythm and you learn to keep going no matter how hard it gets because somewhere out there someone else needs to hear the words  "Me Too" to help them on their journey.