Defined the Problem

 (Just found this blog, which I want to point out has great links. Thanks to Sarcoidosis Experience)


While I was texting a friend, I hit on what the problem is with the medication I am on for this sarcoidosis. All this time that I have been trying to desparately make everyone understand, I couldn't grasp the right word. I've got it: Apathy. (And because this blog is really my only journal of this nightmare I am going through, I wanted to get this down here before I lose any sense of needing to write it.)

This friend of mine - who has been so good to me while I've been sick - texted to invite me to get out of the house this weekend. When I finally got the energy to answer her back, all I could do was be honest and say that I can't do anything until I get over this medically induced apathy.

What a relief to be able to find the word. I've been struggling to put meaning to the way I've been feeling from the moment I started on the prednisone. When I look up references to side effects, I'm not surprised to see that apathy, depression, mood changes - all of that comes up.

This is sheer hell, you guys. When you know what your natural personality is but you can't reach it... I don't know what it is to feel like laughing, talking, being or doing. And I know it's the medicine - which I know I have to keep taking for at least another few weeks.

When I do finish with this stuff, I am going to be so thankful for every emotion, good or bad. Right now, all I can do is be awake or be asleep. My one sort of joy is to sit in the sun and listen to the sounds of the neighborhood. I can't work or really function. I am just in a state of healing limbo.

If you want to even try to know what I feel like, take just one minute and try to make yourself feel numb and empty. Like your whole being is on novacaine. That's what I feel like. I can't find anything to distract myself from the nothingness. I can't write (which is a whole other kind of hell for me) or even lose myself in my imagination.

So, yeah - apathy has got to be the right word. Complete and total.

Peace
--Free

State of Mind

Being hit with this illness has definitely changed my life. I think of not one thing the way I did before. It's as if this whole experience has been life-altering for me.

One of the things I think about a lot is death. I think about what it means to be alive and then to not be alive. One minute, you are just chugging along, doing your thing - working, eating, planning - and then, the next, you could just not be there. I also think about what we mean to each other as people. When I look at the people I love now, I try to imagine life without them. I can't help but think "What if?" - as in: what it they were taken away from me in the next breath, or what if I just don't see them again.

Another thing is that I appreciate things more. Ever since I got home from the hospital, I have been so glad for the good weather. All I want to do is sit in the sun and think about what a beautiful world God has given us. (I told my sister how glad I am that this happened to me in the summer and not during the winter. I think the darkness of winter along with the effects of the prednisone would have driven me past the edge of my mind.) I am hoping desparately that my medicine therapy is over before the sun goes away. I think that if I have the sunshine and warmth, I will be able to survive this.

Like I said, I don't think I will ever be the same after this. Maybe this was a lesson God wanted to teach me: to think more about the NOW of life. It's not like we don't all know that one day we will have to die, but I don't think we respect that fact.

Here is something that a friend of mine said to me recently about faith and death- after my sickness, her getting cancer, and her sister passing from cancer. We were talking about how strong her sister had been in her faith and how she died in her faith. My friend said this: "We all want to be with Jesus, but we don't want to die."

For me, that was so deep. It's true. I live my life loving Jesus and wanting to be with Him. I think about my mother and the people who have already died and how I one day want to see them again. We all want to go to Heaven, but we have to die to get there.

For right now, I want to appreciate life and living. I want to get through this illness and get back to being my old self. I want to be the person who could laugh myself sick at the silliest things, think up funny stories, be interesting and fun and happy. The medicine has stolen some of that - and I know it is the medicine - and I can't wait to get it back. I just want to be fully me again. I want to be inspired to write and talk and be someone that people enjoy being around.

Until I get through all this, I ask that you all keep me in your prayers. Try to be uplifting to each other. No one knows what another person is going through, so we all need to be encouraging.

Peace
--Free

Learning to Breathe

Three days out of the hospital and I am feeling a little more back on my feet. Feel a little more like I can think a little bit more clearly. Still not liking the steroids and the effects I can feel they are having on me.

When I think of what happened to me - all out of nowhere - I am so thankful to God. I could have been lying dead somewhere. What if I'd been driving and run someone over? What if I'd just been somewhere without my family and something had happened?

So many what it if's.

Instead, I ended up with this cruddy disease that I still don't understand, but I am alive and fighting.

I know that people automatically think the same things when they've had a close call with death or disease, but I have got to say it anyway: it makes you think.

The day I was released from the hospital, a friend's sister died of cancer. I didn't know this until I called to check in with my friend. Her sister had fought all the way to Stage Four cancer, and I had just spoken to her myself a few weeks ago. I had told her how wonderful it was that she was still fighting and that she sounded so good and strong while we were talking. She told me that she had put all her faith in the Lord and that He had healed her so far. She wasn't afraid to die. Her sister - my friend - is fighting the same type cancer right now.

When I was being diagnosed, one of the things the doctors had to do was a biopsy on tissue from my lung. That was to determine whether I had sarcoidosis or cancer. It was a horrible procedure that I had to be partly conscious for and I don't know what was worse: that or waiting for the result. Before I knew the result, I remember thinking about dying. I wasn't so much afraid as I was sad. I was sad that I'd be leaving family and friends, sad about things I had or had not done. I was curious about what it would be like to not be alive. I even wondered about how my dying would affect the doctors, nurses and staff I'd met while in the hospital. Mainly, I wondered if my dying would change anything for anyone in a deep way.

Now that I am home and just dealing with the fallout of the Sarc - the bills, what to do with my life and how to cope - I am going to try to enjoy as much of life as I can, worry about as little of it as possible, and be thankful to God for every breath. It took all of this for the Lord to teach me that happiness is an inside job.

Peace
--Free

Family Catchup

For the friends and family who heard I was sick and in hospital and no one really knew what was going on, here's the deal.

I got sick right after my birthday and landed myself in the hospital. Thank God for my family because I would not have gone without them bugging me.  I thought I was just just tired and stressed.

Long story short, I was walking around here, slurring words, tripping over my own two feet, being cranky and tired, etc, etc, etc... without knowing why. This went on for weeks and weeks and was getting worse until recently. I have been diagnosed with some crazy disease called Sarcoidosis. (Leave it to me to get something I can't pronounce. I call it Sarc.) That's what landed me in the hospital from July 4th through yesterday when I was was released. On top of that, the doctors (all of them amazing, by the way!) were getting my ridiculously high blood pressure under control.

Like about everything, there is both too much and not enough information out there about Sarc. I gave up trying to research it and am just paying attention to my doctors - who also admit being a little puzzled by Sarc. The one thing I want to get across to all of you is this: I had Sarc symptoms for a long time and I ignored them. I certainly had High Blood Pressure symptoms that I didn't manage. So, for all of you who are not taking care of yourself - please do. If nothing else, I could have been a lot of healthier these past several months!

I am home now and trying to get a grasp on what this disease and the symptoms mean for me. There is not a lot known about Sarc, but for me, everything just feels weird. I am having some trouble thinking and moving and my body feels a little alien. My eyesight, my movements - even my words and thoughts -  everything feels out of whack. Some of it, I'm sure, is just that I am overwhelmed. The medicines alone baffle me. (It took me 20 minutes to sort out which ones I was taking and when and why.) Right now, I am trying to figure out how this is going to affect the rest of my life. This is my first day out of hospital and facing it all.

Everyone pray for me. Pray that God touches on this disease and the symptoms to heal them. Pray that my blood pressure stays under control and that no more damage is done to this body.

Love,
Free