Today is the start of National Invisible Chronic Illness Awareness Week. Watch this video:
I think the theme this year is quite appropriate: Deep Breath, Start Fresh. When I first got sick in 2008 I was forced to start fresh. It has taken me a couple of years to do this well, but I'm slowly getting there! Living with a chronic invisible illness is much more difficult than I ever imagined. It is a battle. I am constantly battling the disease, trying to stay ahead of it. There are doctor appointments galore. Every time I get a cold I have to go to the doctor before it turns into something much worse. But first I have to figure out if I'm really sick or if I'm just the normal sick. This can be quite a challenge as many symptoms of a cold or flu (fever or feeling feverish, headaches and/or body aches, chills, fatigue) I have on almost a daily basis. I have regular doctor appointments every 3-6 months to do blood work and make sure my internal organs are not being affected by the disease or the medications I'm on. I see an eye doctor every year to make sure the medicine isn't affecting my eyes. The side effects of my medicine can be worse than the disease itself. I have to make difficult decisions about what to take or not take based on limited information and hoping that the meds will keep me functioning without giving me cancer, making me go blind or shutting down my organs. There is a new drug out that is working well for cases like mine. I am working with two rheumatologists to decide if I want to try this medicine. The side effects? Don't ask!
Is it worth it? Some days I don't know. I take my medicine because if I don't, life is miserable. Even though I hate them and know they could kill me, I need them. But then again, if the disease isn't under control and my body keeps attacking itself, that could kill me too. I don't want to shock you or scare you or make you worry, but this is the reality that I live with. I don't worry about it because I have very good doctors that check and double check everything. I also know that ultimately God is in control and my life is in His more than capable hands. Another thing that is difficult is knowing that this is a chronic illness. Unless the Lord intervenes and heals me, this is a battle I will be fighting the rest of my life. It is exhausting and depressing to think about, so I try not to. Needless to say, life is a roller-coaster of exhausting emotions. Some days I just want to scream. So I listen to Skillet's song "Never Surrender" and I feel better!
Is it worth it? Some days I don't know. I take my medicine because if I don't, life is miserable. Even though I hate them and know they could kill me, I need them. But then again, if the disease isn't under control and my body keeps attacking itself, that could kill me too. I don't want to shock you or scare you or make you worry, but this is the reality that I live with. I don't worry about it because I have very good doctors that check and double check everything. I also know that ultimately God is in control and my life is in His more than capable hands. Another thing that is difficult is knowing that this is a chronic illness. Unless the Lord intervenes and heals me, this is a battle I will be fighting the rest of my life. It is exhausting and depressing to think about, so I try not to. Needless to say, life is a roller-coaster of exhausting emotions. Some days I just want to scream. So I listen to Skillet's song "Never Surrender" and I feel better!
I really like the part that says "Do you know what it's like when you're not who you wanna be? Do you know what it's like to be your own worst enemy?" With this disease, I am my own worst enemy. My body is attacking itself and I am constantly battling it. But I will never surrender! I try to have joy in the midst of pain. I see how God is working in me and through me and I rejoice. I see how He touches my body and helps me through when the pain is bad and I praise Him for it. It is a daily battle of fighting this disease, yet surrendering to the Lord and His plan for my life. He is using this disease for His glory. I take great comfort in that because if He was not glorified through this disease, it really would be hopeless. However, I know that a greater good is coming out of it and I can go on another day, relying on my Father in Heaven to get me through and take care of me.
It's hard for me to talk about what/how I am feeling most of the time. It is such an internal battle that I just don't have the energy to relive it out loud. I know that does not make sense to many people and I've hurt people by not talking about it and letting them be there for me. But that is why I write. I can write to you things that I can't say out loud. When I was a little girl my mom and I used to keep a journal. We would take turns writing letters to each other in it. It gave me the chance to write about things I felt silly talking about. We kept the journal up through college and even now write occasionally. Which reminds me, I'm pretty sure it's my turn...sorry mom! Through my blog I can keep you updated about what is going on in my life so you know, even when I don't have the energy to talk to you about it individually. I always feel so much better after a blog post where I can get everything out. It's therapeutic for me and you get a look at what's going on inside my head!
One of the resources that was made available on the Invisible Illness Awareness Week website is called "30 Things About my Invisible Illness." This is mine:
1. The illness I live with is:
Undifferentiated Connective Tissue Disease
2. I was diagnosed with it in the year:
2010
3. But I had symptoms since:
January 2008, though I have struggled with a poor immune system most of my life.
4. The biggest adjustment I’ve had to make is:
Changing my life plans and finding new dreams
5. Most people assume:
That I’m getting better…or that I will get better
6. The hardest part about mornings are:
Finding the energy, strength and motivation to get out of bed
7. My favorite medical TV show is:
Mystery Diagnosis
8. A gadget I couldn’t live without is:
The rubber grip thingy to open things…though that doesn’t always work either!
9. The hardest part about nights are:
Trying to get comfortable and fall asleep when everything hurts
10. Each day I take 12 pills & vitamins. Each week I get 1 injection.
11. Regarding alternative treatments I:
Have tried so many things, but I need to be careful to follow my doctor’s advice. They are the experts and some alternative treatments can make my particular type of illness worse.
12. If I had to choose between an invisible illness or visible I would choose:
Visible
13. Regarding working and career:
It is difficult. I want to work so much more than I am able. I do what I can.
14. People would be surprised to know:
How good I am at putting on a happy face and pretending everything is ok when it’s not.
15. The hardest thing to accept about my new reality has been:
That I can’t do things that I used to be able to do, love to do, things that make me, me.
16. Something I never thought I could do with my illness that I did was:
Start a business
17. The commercials about my illness:
There aren’t any.
18. Something I really miss doing since I was diagnosed is:
Climbing
19. It was really hard to have to give up:
My dream of living overseas and serving the Lord in a different country
20. A new hobby I have taken up since my diagnosis is:
Photography…and it turned into much more than a hobby!
21. If I could have one day of feeling normal again I would:
Ride my motorcycle to a place where I could hike and climb things all day!
22. My illness has taught me:
That I am more than the dreams I have. I am more than the title of my job.
I am more than this illness. My life may look much different than I ever imagined, but it is good. I have learned that my reason for being in this world is to glorify God in every circumstance.
23. Want to know a secret? One thing people say that gets under my skin is:
You look good, you must be feeling better.
24. But I love it when people:
Write me an encouraging note or give me a hug (This must go back to the not liking to talk about it out loud thing I mentioned earlier!)
25. My favorite motto, scripture, quote that gets me through tough times is:
Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.”
26. When someone is diagnosed I’d like to tell them:
God isn’t surprised. He can use this for His glory.
27. Something that has surprised me about living with an illness is:
That I’m not as strong as I thought I was or would like to be. I need encouragement and support and sometimes help with little things like doing dishes or cleaning the bathroom.
28. The nicest thing someone did for me when I wasn’t feeling well was:
There is a quote I ran across that says, “A true friend is someone who sees the pain in your eyes, while everyone else believes the smile on your face.” The nicest thing someone has done for me is taking the time to get to know me. The me that I really am, behind this disease. The me that I was before I got sick, that is still buried somewhere deep inside.
29. I’m involved with Invisible Illness Week because:
I am just one of so many people that suffer from an invisible illness. By sharing my story I hope that it will help you understand other people in your life that are struggling with an invisible illness.
30. The fact that you read this list makes me feel:
All warm and fuzzy inside :-) Actually, it does! It makes me feel really good that you care enough to read this and learn about me and others like me.
