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)."

The Ultimate Gift

"Every happening, great or small, is a parable by which God speaks to us; and the art of life is to get the message."


This quote comes from "The Ultimate Gift." If you read the book, it's pretty simple to find... if you watch the movie it kind of gets lost in the background.


I love this quote, and the movie, and the book. So often we try to look for big answers, but sometimes God is teaching us things in ways we don't expect. Every happening really can teach us something. And it doesn't even have to be a good happening.


There are some things in the past I wouldn't want to do over again. Some of them were my mistakes, some of them were others mistakes, but regardless God taught me through them. I'm a bit wiser for going through it. It makes it so much easier to deal with and offer forgiveness when I step back and say "hey, that was horrible and I'd never want to go through it again, but I'm a better person for it."


I truly believe we can learn so much from every experience. I'm going to do my best to keep my eyes open and my ears open so I can see and hear all God wants to teach me. I want to live a life that gets the message.

Oh how much you miss.....

Lately it becomes more and more apparent to me that I even I took some things for granted during my spell of "good health." A few years ago, I was a lot less limited than I am now. Even then I wasn't as strong as the "normal" young adult, but I managed to do things that are now just impossible. It can be frustrating and discouraging to want to do things and not to be able to do them.


In AWANA last year I often felt horrible that I couldn't pick any of the kids up when they cried. I use to be able to do that. I couldn't sit on the floor with them and play (I'd never get back up). The games I could play with them during rec time were few. I think out of everything that is what I miss the most! Not being able to interact as much with kids. The worst part is now that I'm taking drugs to lower my immunity, and it is a real possibility I'll have to give AWANAs up to prevent from being sick all the time. Just the thought breaks my heart! I love those kids. Not to mention that is my place of service.


The other day I started thinking of all the things I couldn't do or would struggle to do right now and I have to laugh at some of the silly stuff I miss. The funniest thing is that I realized the other day that I couldn't putt-putt golf too well right now and I felt this incredible sadness. I haven't done that in years, so I have no idea why I all of the sudden have the urge to pick up a putter. haha. I miss being able to run up the steps (I am still managing to go up them, but it is a struggle at best.) I miss wearing high heels! How I miss those heels. I was able to wear them to a wedding the other night and I was estactic--but even then I had to walk very catiously and they are only one pair of heels I can wear. I know this all probably sounds silly, but I really do have to deal with not just losing serious stuff but losing the small, silly stuff as well. It's easy for outsiders to say "aww that's no big deal" but try living without it and you will see how much you would miss!


In the process of all this I'm also sort of grieving my childhood. It is something I never did, and should have done years ago. It's painfull yet freeing at the same time. It is hard to know that I'll never get those years back. A lot of the little things most children take for granted, I missed.


Even while dealing with all this sadness, I am well aware that I am blessed. So blessed. I am trying to not take anything for granted anymore. I always thought that I didn't take things for granted, and in a lot of ways I don't think I do--but the past year has taught me that during that time when my health was better I really did take for granted that things would always be that way. I was blessed to have those years and I hope to have years as good or better in the future--but this time I am not taking a second for granted! Please, if you have been blessed with a healthy body--do not take it for granted!


The past few weeks have been frustrating and discouraging. The medication just isn't agreeing with me too well. It is a chemo drug so it is pretty strong. I hate that all my options pretty much mean I'll be killing good cells along with the bad cells. My disease steals so much for my life, and now the medication seems to be taking more away. But what other option do I have? If I don't take medication, I may not be here much longer. I know that it is that serious.


Through the 15 years of my illiness, I always just accepted it. This is my path. I still accept it, but at times now I question why. Not because I feel sorry for myself, but because I know this all part of something that is bigger than me. God has a plan in it all. As horrible as the past few months have been, they've also allowed me a lot of time to read. While I read a few things just for pure enjoyment, a lot of what I read right now is pretty deep stuff--and I know I'm growing through it. I don't think God can make us whole until we come to Him fully broken.


I know that I've now gone on and on a lot, and I want to say that I didn't do so to complain. I'm just really reaching deep down and trying to express the part of me I've tried so hard to hide for so long. I got so use to opening up about my disease to people and having a wall put up, that at some point I just stopped talking about it. But I can't expect people to understand unless I open up about it. I cannot hide or devalue the fact that my illiness has been a part in shaping who I am. It does not define me, and I am so much more than just this illness, but it is still part of me, and when I hide how I feel I'm really denying part of me. I don't want to do that anymore.