Life with Lupus

Wow! Its been year since I have been on here. It has been a year of many ups and downs. I have gone back to school, gotten back into piano, and have enjoyed time with friends. I even added a new little addition to my home, my little puppy Oliver! I love him so much and he has been the best thing in a long time. I have even had the opportunity to move into a beautiful new home with one of the most amazing roommates I could have ever asked for!  Although there have been some really good times, there have been some really rough road blocks. I was going to school and doing well it was so nice being back and being around people. I got to share my story of living life with lupus with my class and I am so thankful I  had that opportunity. With only two weeks left of class my body shut down and could not take the stress any longer. I am still trying to get back to my "normal". Its been really hard. My docs. finally started me on a new med. called cell cept and I am really hoping it will relieve some of the stress on the body and I will live some what normal. I know I will never be the same girl I was, but I can learn to live life the best I can with my new limitations! I thought I would share parts of my paper with you all. I LOVED writing this paper and getting the opportunity to share my life with so many people and help spread the awareness of this awful disease that takes so much from so many people. I hope you enjoy! :)

Life with Lupus-

Butterflies and purple are our symbol and numerous people may think that they represent beauty. For those suffering from lupus our symbols are anything but beautiful.  People with lupus come from all walks of life and grieve with more than the complications of the disease, it touches every area of life in ways no one could ever imagine.  I have lived with lupus for over one and a half years.  In my wildest dreams, I never would have imagined my life would be changed so greatly.

Lupus is a disease that causes the body to wrongfully attack the good stuff instead of the bad stuff.  This is known as autoimmune and the cause is unknown.  There are two types of lupus. The first type is discoid, where the immune system attacks the skin mostly, leaving scaly sores and scabs.  The main characteristic of discoid lupus is the “butterfly rash” that makes the shape of a butterfly covering the forehead, across the bridge of the nose onto the cheeks.  Systemic lupus erythematosus (SLE) is when the body attacks the inside (heart, lung and intestinal linings, kidneys, brain, and joints).  I was told by one physician that SLE moves throughout the body and only becomes chronic when it stays in one place.  For me, lupus has caused me to have seizures, attacked my kidneys, lung and intestinal linings, and my joints.  These attacks result in inflammation, which leads to daily pain.  Some days are worse than others.  It’s hard to remember what it was like be without pain.  As if lupus wasn’t bad enough, it comes with what us “Lupies” (people with lupus) call, “The Lupus Package.” This means that the person not only has lupus but can/will develop one or more other autoimmune diseases.  This is one of the many reasons that it is hard for doctors to diagnose lupus.  Casey, a young lady with lupus, allowed me to interview her for the sake of this paper.  She informed me that she has mixed connective tissue disease. I have also been told I could have mixed connective tissue disease where lupus is the primary disease but I have other things that include myositis and Renaud’s.  

Here is a little insight into the life of a Lupie.  Every day is filled with the unknown.  We’re fooled at first…  When we open our eyes after a restless sleep, pain is low key and we feel like we might actually accomplish something today.  Then we take our first step, the pain, indescribable pain is an instant reminder that lupus has stolen each day.  How can I/we live another day in such excruciating pain?  How can our bodies fight so hard and keep fighting?  Lupus causes a person to be terribly weak and tired.  Walking is not easy.  Each step feels as if you are dragging one ton weights.  There is an overwhelming need to sleep.  Extreme fatigue drains us of life itself, causing us to rely on other people to help with the simplest little tasks in hopes that we have saved enough energy to care for ourselves to some degree, or save enough energy to spend time with friends.  Casey stated that her mom helps her get her groceries so she has energy to go to school or hang out with friends.  She describes lupus as playing a game. “Every day is unknown so it is like spin the bottle.  Once you spin it, you don’t know where it’s going to land.”

Lupus is a lonely journey.  Aside from the physical difficulties of living with lupus - severe pain, exhaustion, barely living, high emotions, did I mention emotions? One can’t even imagine the rollercoaster ride of losing everything in life and giving up all one has ever hoped for or dreamed about because this horrid disease came and stole them away.  It alienates its victims from life itself.  From time to time we may find comfort in fellow sufferers or in friends and family who know our sorrow as they have seen the losses we experience. 

Triggers.  Triggers are things that cause the disease to flare, or become worse.  Did I mention that getting out of bed is a trigger?  Stress is a huge trigger factor.  One can probably imagine the stress of school, going to work, relationships, finances… are bad enough.  It is worsened when one gets weird stares because people don’t understand.  The worst is dealing with neurologists (in particular) or other physicians in your entourage of care, that do not understand the disease and find it easier to hide their ignorance by accusing you of being lazy, or telling you, “it’s all in your head.”  Sadly, the same attitudes and comments come from family and friends that don’t understand what it means to live with Lupus. Many, like some doctors, think it is all in our head and that we are just lazy and don’t do anything.  I know from experience that it is really hard to be told, if you would just get a job you will be better. It doesn’t always work that way.  I am part of a lupus support group.  Many members stated that Lupus is difficult on any form of relationship and have told how their husbands or wives have either left them or have gotten a divorce because they don’t understand the extent of the disease.  I have been blessed with some really great friends that have and are trying to understand my illness.  They are willing to push me around in my wheel chair and leave activities earlier because my body has had enough and I can’t do anything more. Some activities us Lupies have to miss out on include: school, work, church, fairs, movies, vacations and the list can go on and on. One lady stated that when she goes on vacation she has to plan rest days in between the days of travel and activities so she doesn’t become so sick she is unable to do anything.  I would say at least fifty percent or more of the people on the support group can’t hold a job. Because our bodies are so unpredictable and we don’t know what each day is going to hold we end up on disability. That is a hard thing for us to come to reality with. Our lives are just completely shaken up with Lupus.

Lupies fill excluded and imprisoned from everyone and everything. Our bodies say no, and we have to listen. We don’t have control over our bodies, our bodies control us. If it says lay down we have to lay down.  On the occasional good day, we may be able to do a little extra.  The hardest thing is hearing the words, “you don’t look sick.”  One of the hidden secrets of a Lupie is hiding how they feel behind nice clothes and make-up.  The big questions is… is it worth it to hide our illness or is better to be who we really are so people will actually believe we are sick? Casey would say, When I go to the doctor I don’t throw on makeup or nice clothes so maybe I might look sick.

The hardest thing about lupus is dealing with our disease personally.  We have to learn to live with this 24/7; 365 days out of the year.  When I was first diagnosed with lupus, a support group friend told me, “You have to look at the person you used to be and bury the old you and accept and become the new you.”  That is one of the hardest things I have ever had to do.  After explaining this to a counselor, she responded, “How hard to have to burry someone you were so close to and have to grieve that loss.” It is hard but that is what we have to do. We are the same people emotionally, but our bodies are completely new. As Casey stated. “After many years of dealing with this you become emotionally strong.” I’ve begun embracing the new me.  And though some days are hard, and I can’t imaging going on, I am finding the strength to be who I am and embrace what each day offers. As you can see there are several aspects to living with lupus.  There are many more things that could be addressed.