My Lupus

In less than fortyeight hours I will blow out thirtysix candles on my birthday cake. Some see their age ticking up and up and fill with a sense of dread. I watch every year come and go with a sense of accomplishment and joy. I celebrate another beautiful year in this ever changing world. I reflect not on the bad but the positive I have experienced this past year. I found my other half, was married in the West Indies and we are now trying to expand our little Lautzenheiser clan.......all moments to be overjoyed about and allow to eclipse the moments that may have left a sour taste in my mouth. Most important......I am here. I was able to wake up every morning and bask in the sun. I watched as clouds flooded the sky and let go an immense amount of water onto the barren land below. Those memories are all mine and are filed under my moments in time. 

I write about navigating the rough waters of living, loving and coping daily with a chronic autoimmune disease called Lupus. Lupus has been and still is a very difficult disease to detect, diagnose and treat. At this point in time there are no cures and those diagnosed with Lupus will suffer through the disease for the rest of their lives. One of the most difficult things with Lupus is not one disease manifestation is the same from one patient to the other. In all reality we all play a crucial role in the research of a disease that allows each of us to be individuals even when you just want to belong to a large group. The doctors can not predict what my Lupus will do next or what organ will be affected. In a sense it is a hide and seek game I play everyday with my own immune system. 

Today I am taking a timeout. I am taking this timeout to tell you how my Lupus is affecting me right now in this moment. I ask of all of you to remember your loved one with Lupus may see doctors all the time and may even fill their time with support groups but not one single person will mimic their disease path. It is a disease that will leave so many feeling that they fight alone and live in a world of isolation and unwanted internal time to themselves. All we can ask of you, friends and family, is to be patient as we navigate these ever changing waters that at times capsizes the very solid ground we stand on.

1. Today I will take twenty six pills. That is 182 pills a week. At the end of the year that will total 9,940 pills.

2. Out of all of those pills I must swallow daily not one is treating my Lupus. Greg and I are trying to start a family so we are maintaining my comfort during this period of time. Once we have our little one I will have to jump on a large dose of steroids and build the bridge back to treating my disease and not just the symptoms.

3. Starting a family is going to be a journey of heartache and hopefully an end result of pure joy. The chemotherapy I took for years may have caused too much internal damage and my body may not ever be strong enough to have a child.

4. I now struggle with my weight. This is not caused by too much ice cream or eating an entire pizza, it is caused by medications. Medications I must take. My heart medication causes a thirst that can not be quenched so I drink, drink and drink some more. Another medication causes me to retain that water and you can imagine that it is a never ending cycle. So, be kind and do not judge. Walk a day in these water logged shoes and I guarantee you, those dusty boots in the corner will feel like your toes went on vacation.

5. Over the past year Lupus has attached my nervous system and has caused neuropathy in my feet, legs, hands and arms. In the next year I will have to undergoe surgery on both arms to take pressure off of the nerves affected. Neuropathy can not be reversed only treated and is one of the diseases Lupus likes to party with. So, I am going to rock the party with purple casts!!!!!

6. Along with Lupus and neuropathy psoriasis has joined the party! I will undergo biopsies on both ankles in the next month to see if it is reaching the joints it sits on. I have no idea who invited that fella to the party!!!!

7. This past year I had to visit my favorite emergency room multiple times. The majority of those visits can be blamed on these two things called lungs. I have the lungs of a 75 year old at this point in time and find myself needing to use my breathing machine throughout the year.

8. For the first time I have a discrepancy with my EKG. Now we are watching and monitoring my ticker every few months. If you ever want to feel young.......go sit in a cardiologists office!!!!

9. I have to carry an entire dose of a brood spectrum antibiotic and steroids with me at all times.

10. Easting is very hard. I loose my appetite at a drop of a hat and I can no longer tolerate dairy or soy. Thank goodness I have a fondness for almond milk at this time!

11. Every time someone asks me how I am feeling it is easier to just say ok than it is to explain what Lupus has decided to do today. 

12. Underneath the smiles and unshakeable strength lies a little me crying on the inside. Sometimes the pain is so bad that doing the dishes is the largest accomplishment of the day. I normally celebrate with a nap!!!!!

13. No matter how Lupus affects my body and my mind I am still the person I was eighteen years ago, ten years ago a few months ago. A little older on the outside but still silly on the inside.

14. I dance everyday. Sometimes I am able to spin little Mia around the room, other times we boogy on the floor or I close my eyes and dance through my memories. No matter what, I dance everyday.

15. I live in the Valley of The Sun but I have a vitamin D deficiency. No amount of time in the sun will ever fix it. I must take 10,000 IU a day to bring my levels to a normal range. 

16. A simple breeze blowing, covers at night and even just my jammies can cause my skin to hurt and burn on contact.

17. Speaking of jammies......I think I own more jammies than socks!!!!! 

18. I run a low grade fever almost everyday. I sizzle!!!!!

19. I have lost friends because of Lupus. I make plans and have to cancel more than I am able to follow through. It is not because I am a bad person or I don't want to see and spend time with my friends. Sometimes the pain is so bad I just want to be in my bed surrounded by my things. It is where I have the most comfort so I can be in the moment good or bad,

20. My support system is more important than any medication I take now or will take in the future. They hold me up and wipe my tears when the pain is unbearable and celebrate the joyous moments right next to me.

Through all the dark Lupus allows me to see light in some of the bleakest moments in my life. I see the world through eyes most will never be able to even glance through. It has taught me to hold those who love unconditionally close to your side. They may be few in numbers but they are enormous in heart.