Blog for a Cause – Lupus vs Me

I woke up this morning dreaming of my life six years ago. I was 19 and fearless. I could conquer the world, one day at a time. On a typical Saturday morning I could jump awake, go to the sunny beaches of Santa Barbara, swim in the waves, and lie in the sun, tanning to a perfect brown better and faster than anyone else I knew. Then, inevitably, I would get bored and decide to leave the lazy morning of the beach alone and travel to the mountains. I would hike the paths, climb the rocks, and absorb the sun, beauty and wildlife of the hiding pathways behind Montecito. After reaching the top of the waterfall, I would pursue the downward trail and return home. Still full of energy I would shower, study and ultimately end up calling my friends. We’d make plans for a few of us to go out to dinner and then find a place to dance the night away. I would be thinking all the while, “I am invincible.”

I woke up this morning not jumping anymore like I used to, more like lying there, stretching slowly to take assessment of the battle I have to face today. How bad will it hurt? How much can I do? How long can I last? Why did I overdo it yesterday? I know that when I overdo it, it will take me a few days before I can recoup, however, I still pursue my life as if though I was a normal 29 year old. Unlike some stories of people who are chronically ill, my story with lupus did not start suddenly, it did not happen drastically, it did not end fatally, but it has changed my life dramatically. This is my story…

I was always a little ill growing up, but I always had an over active mind with an under active body. The doctors were never sure what was wrong with me and everyone assumed I’d grow out of it. When I was 21, I went on a vacation with my boyfriend to Mexico to celebrate his law school graduation. We were so excited for more sun and beautiful blue oceans as far as the eye could see. When we got there though, my excitement changed to migraines, exhaustion, and nausea. I ended up sleeping our whole vacation away and even fell asleep right at our dinner table. I didn’t know what was wrong, but when we got home, it didn’t change. After spending two months in Chicago to be with him, I went back to California to finish my last year at college. We were still unsure what was happening to me.

The fall wasn’t bad, but at the end of January 2003 I got very sick with pneumonia. I suppose this infection was the straw that broke the lupus camel’s back since after I was sick a horrible lupus flare began. I began to sleep my life away, unable to get up for anything, even my twenty-second birthday. Going into the sun was out of the question, it hurt my head too much but beyond that, after a water skiing trip with my friend in June, I learned that my whole body is sun sensitive and breaks out into painful red rashes. My joints began to swell and now some days I can barely walk.

Now I wake up stretching, assessing how stiff my body is and whether or not walking to the bathroom is going to hurt. I work full time, but come home so weak and crying that I can barely walk anymore. I fight it, oh trust me I fight it, but when I do fake my “normalness”, I wake up the next morning too exhausted to move, realizing that my plans for the day are completely shot, since I don’t have the strength left to do them, I wasted the strength for yesterday. I look at other people and I get jealous, how can they be so lucky that they don’t take pills everyday to help them survive? Why do they have the energy that I long for and thrived on?

My boyfriend is now my wonderful husband and in March we will have been married for seven years. However, unlike normal newlyweds we were given rules that my lupus must be under control before we were allowed to try to have children. I had to get approval from my rheumatologist before we could move on to the next step in our life. A step that is so easily overlooked for the “normal” young couple. When it came time for us to try to get pregnant it was a quicker process than we thought it would be, but unfortunately we miscarried. We took a break to emotionally heal and tried again. Once again we got pregnant quickly, and once again we miscarried. Three pregnancies, three miscarriages. My lupus was simmering in the background and hiding just enough to not get noticed as a problem, but just active enough to cause hidden chaos. At this point we had to stop trying to get pregnant until my body calmed down…it never calmed down quite enough.

After years of struggling with lupus and its affect on pregnancies, my husband and I were finally able to have our beautiful baby boy Christmas 2007. Pregnancy was difficult and I had many issues with pre-term labor and other problems. I did end up having my son five weeks prematurely, but that was a lot better than having him 10 weeks prematurely when I went into labor the first time. Beyond that, pregnancy was great for me in the sense that it put my lupus into temporary remission. It was the first time in years where I felt semi-normal (well, besides normal pregnancy feelings) and I thought that maybe my lupus had gone into remission. Unfortunately, I was wrong.

Around the time Son1 turned three months old I was starting to ache all over. I was getting headaches and could feel my lupus starting to stir. More significantly, my joints began to ache and swell, particularly in my fingers and hands. There were many times where I would have to change a dirty diaper or change my baby’s clothes and I would struggle to get the snaps on his clothes or hold the zippers on his jammies. After a week or two of feeling like this I began to worry. I was tired, but isn’t every new mom? I ached and was sore, but it was because I had just had a child, right?

We struck gold again in 2009 when I became pregnant for the fifth time and while I had the same preterm labor issues with Son2, he was born beautiful and healthy in March 2010 at 38 weeks. When he turned two months old my flare began again I endured another flare for three months. I started to lose hair like I never had before and every part of my body hurt. I suppose chasing a two year old combined with new mom sleep deprivation made my body rebel that much harder. I did what I always do, though, and endured it and knew that at some point….it had to end. Finally it did end, but not without leaving me weakened and exhausted.

Before I had children I shared what lupus had done to me and how I felt that things were being taken away, but now I can’t help but think about what lupus will do to my family instead. How am I going to be a good mom if I can’t be in the sun at the park with my kids? How am I going to be a good mom if I can’t hold my child because I’m so sore? What type of mom am I going to be if I have to limit what my child does during the day because I don’t have the energy to do it all with them? My body has rebelled against me many times and my greatest fear is that its rebellions will affect my family. What will it be like for my kids to have a mother sick with lupus? Even scarier to me is the thought of my lupus getting worse and preventing me from being there for my child in years to come.

I don’t want to become a burden to my family and I want to be the best wife and mother possible. In over 40 years a new drug has not been found, and people continue to die from this disease. One and a half million people are still suffering from lupus while we are using the same drugs that were used in the 1960s.

I have been on the typical plethora of drugs that any lupus patient gets to be on, but I don’t take steroids. My body has a severe reaction to them and to my doctor’s frustration I refuse to take them again. Some days the medication helps and I get lucky and forget that I am sick, other days I get a horrible smack in the face that reminds me of just how sick I am. I admit it, I hate medicine, I hate taking it, and I hate getting refills every month. I hate it! I hate it! I hate it! Each night I take my medication as I wash my face and each morning I take my medication as I put on my face. No matter how much I hate my medication it is one good thing in my life. How? Well, I think of it this way. If I didn’t have my medication then I can only imagine how much worse I would be. My medication is nothing more than the glasses I wear for vision. Medication helps me get to that 20/20 goal of health. I know that with the proper cocktail I will one day feel better and my life will hopefully get closer to where I want to be.

We are all capable of being great, with or without lupus, we just have to fight it…together. “True greatness comes not when things go always good for you; but true greatness comes when you are really tested, when you have taken some knocks, faced some disappointments, when sadness comes. Because only if you have been in the deepest valley, can you ever know how magnificent it is to be atop the highest mountain.” –Richard Nixon. We will eventually reach the top of the highest mountain, only IF we climb together and have our ammo of lupie medications in tow.

I’m excited to be doing something about it…and once it’s comfirmed…I’ll tell you all. It’s great news.

Thanks Nirvana Mama for hosting, Blog for a Cause.