Unpredictable

I think one of the hardest things about the illness is that it is unpredictable. It comes and goes in waves, and there is never a good way to tell just when it will strike. I'm not the only one who feels this way; other people with JDM have said as much.

A year ago I was doing a lot better than I am now. I was starting to think about what I'd like to do if I continued to improve. But improvement wasn't to be. The illness struck hard again and at the moment I'm lucky if I have a few days away from the house in a week.

I've gotten a lot of slack through the years because people will see one day a week and assume by that one day that it means the disease isn't active. What they don't see are those days that I struggle to do the simplest things. They can't see that even on days when I look and act like things are fine, I am often times in some pain, if not a lot of pain.

I've had people ask me how I really can keep going on if I hurt so bad. The answer is simple: I have to. I have no choice. I can't just give up; to give up would mean I would just give up and die. I have JDM, but it doesn't have me.

An emotional look at things

In my life, I've found that I don't just fight the Dermatomyositis, but the emotions that come with it. Mostly, I fight with the insecurities the disease has caused. Society doesn't help; I'm constantly told because my journey has been different that I am in some way less than those people my age who have perfect health and a "normal" life. On top of that I fight the changes of my out appearance the disease can cause, like the thinning of my hair and the rash I typically successfully conceal with make up every day. Then there are the medications that cause you to gain excessive weight in short periods of time. In addition to that, I'm a female, and almost every female I know has wrestled with a serious insecurity at some point. It is hard sometimes to look in the mirror and not take to heart everything I've seen through the years.

On the flip side, I know it killed my vanity as a child. Before all this, I was pretty vain! In high school I kept to myself so much that I think some people thought I still was vain, but in reality I kept to myself because I was insecure and shy. At some point though, I traded the vanity for self loathing. I've found that neither vanity nor self loathing is good for the soul. For one thing, it turns the focus on oneself and off the needs of others. On top of that, it causes one not to reach the potentional...if one if vain the think too highly of themselves to improve to their potentional; while if one hates itself, it never has enough confidence to improve to their potentional.

What has amazed me over the past few months is how God has brought me to a healthy confidence. Don't get me wrong--I still face insecurities, and I probably always will to some extent. The difference is that I don't let them rule me or my life anymore. I'm thankful to have people in my life who help me through them. I'm thankful for the family and friends who love me even though my life is different than theirs. I'm thankful to God for using people and circumstances to bring me to this point, for I know I have grown along the way.

Grief and the things I can't do

Part of coping with my illness means accepting my limitations. This isn't always easy for me to do. I get constantly frustrated at times with what I can't do. Even simple things can become huge tasks. There are days I can't open heavy doors. Some days I can't even lift anything that weighs more than one or two pounds. Sometimes just opening my make up is a challenge. I have to plan my weeks like I'm going to war. I know I only have a certain amount of energy, and I know that I will have to pick and choose carefully what I can or cannot do. It's frustrating and heart breaking.

You also deal with the "what ifs".... I remember being a child and watching the other children running, and I wondered if there would come a day when I wouldn't even be able to walk. At times when the illness was severely active, I even wondered if I would live to become an adult. Those are mighty big questions for a little kid to ponder.

This brings a great deal of grief to my life. Sometimes I have to let go of abilities. I go through the stages of grief (denial, anger, bargaining, depression, and finally acceptance.) Sometimes abilities are lost slowly........ sometimes they all happen very fast.

I also have to at times grieve relationships. What sometimes frustrates me the most is how others respond when I admit to my limitations. I've been told from time to time that I "make this up" or "it just isn't that serious." My response to this is: if I was going to make something up, I'd make up something much more exciting than this! And it's serious enough that if not monitored, it could kill me, so yes, I would consider it serious. I despise fighting the opinions of others more than I despise fighting the illness.

When it comes down to it though, I will admit am not always as honest about my illness as I should be. I'm actually much more limited and weaker than I let on most of the time. Truth be told, I hate being this limited, so sometimes I am not as open about it as I should be. And sometimes I push myself too hard in public, just to be in immense pain the next day. I know it's a pride issue, and I need to be more open, but it can be downright embarrassing to say you are 23 but need others to do certain things for you, especially when by nature you are a bit independant and stubborn.

Sometimes you live not just with that pain of what is, or what might be, but the pain of what was. I have had to grieve for the childhood I never got to have. On the day of my diagnosis, I in a way became an adult. I was only nine, but I was faced with the reality of death and a life altering illness.

No one can go through a chronic illness unchanged. You yearn for any ounce of normalcy in your life, and sometimes its as simple as wishing you could open that jar of make up or put on your own pair of socks. I live with a spirit that is desperately yearning for the ability to do more and a body that won't allow me to. I go through times when I feel like my spirit and body are fighting and I'm not sure who is going to win.

The only way I can keep my sanity is to humble myself at the foot of the cross and accept that this is my burden to bear. I come to a point where I know this isn't about me, and that my God is bigger than my illness no matter how serious it is, and He will use it for His glory in ways I can't imagine now. I know it is through my weaknesses that Christ has refined me the most. Being forced to be dependent on others has taught me how to truly be dependent on Christ. And in the end, I know that is worth far more than the things I can't do.

The official relaunch

So I'm not really sure why I stopped writing here, but lately I've felt more and more that I need to begin it again. So welcome to the official relaunch of my blog!

I want to explain my purpose in this. This blog isn't a place for me to complain. This blog isn't a place for me to vent for therapy purposes (although I'm sure it will be helpful!) This blog is about awareness. One thing that I feel incredibly passionate about is making people aware that you don't have to "look" sick to be sick. Chronic illness of any kind isn't any fun, but it can get increasingly frustrating when you don't look sick, because people are hesitant to believe that you actually do have a serious illness. I hope that my being open about my struggles will increase others compassion towards those who face such illnesses. My other reason for blogging about this, is because I feel like God has taught me a lot through my illness and I hope I can pass that on to others.

Wishing you faith, hope and love
Stephanie

Chronic illness facts:

• 1 out of 2 people will face a chronic illness in their lifetime.
• 96% of those illness will be "invisible" which means, you cannot tell by looking at that person they have an illness!

A few facts about my illness and experience:

• It's 3-in-a-million
• Unless you know the signs to look for, you would never know it was there just by looking at me.
• Sometimes even the smallest tasks are huge obstacles for me (Is it hard for you to put on your own socks? It's incredibly hard for me, and sometimes impossible.)
• It affects the skin and muscle tissues of my body. Think about it... how much of the body is composed of skin and muscle? A whole lot.
• People with my disease usually respond in three ways: 1) They respond to treatment, the disease reaches full remission, their lives are relatively normal. 2) They don't respond, the disease is fatal for them. 3) Treatment keeps the disease from becoming fatal, but they suffer daily and never can fully reach remission. I fall into the third catagory.
• My disease was active for at least two years before a doctor took my symptoms seriously.

Jennifer Rothschild

I found a new author I really like. She is so incredibly wise. A few of my favorite quotes from her:

"Faith is not meant to offer an escape from life's difficulties; its purpose is to give us the strength to endure them. God allows hardship because of His great mercy and love for us, and He often removes it for the same reason."

"It takes just as much faith to bear a burden as it does to believe that it can be removed."

"The only difference between becoming bitter and becoming better is the letter I. Approaching our difficulties from the standpoint of what I want, what I have lost, or what I think is fair will embitter us. Bitter eyes can percieve only the injustice and the sorrow of our situation. Grateful eyes, however, will always see the grace of God, regardless of how difficult our situations might be. Grateful eyes allow us to see "the goodness of the Lord in the land of the living." (Psalm 27:13)."