Eva Markvoort - 65 Red Roses

It has been a year now since Eva Markvoort lost her life to Cystic Fibrosis. In the days that followed I wanted to write a post, but I found it difficult to write about Eva because of the profound effect it had on me, especially in a time when thousands of others were feeling much like I was. An overwhelming grief and loss had touched so many lives and I couldn't focus on what it was that I wanted to write after reading so many other comments and posts. My words and feelings had somehow blended with everyone else's, and so I chose not to write anything. I wrote for myself and how I was feeling.

During this time, my illness had me looking at my own mortality. Because of this I found myself reading many blogs and becoming fast friends with some wonderful people. Sadly, this online network also made it possible to see the rapid deterioration of some of these people I had made friends with, and over time I found myself reading their blogs written by family members announcing their loved ones were in the hospital and their days were ending.

The first time this happened I cried for days. It was a friend of mine who had passed away from breast cancer only two weeks before Eva. Both of these women had touched my heart in many ways because of the remarkable outlook they had in dealing with their illness. The strength they carried was phenomenally bright in such a dark time. I was moved that they could both reach out and offer hope and give wonderful advice to so many people during a time when they were faced with so much of their own.

The thing about Eva was her desire to educate people about cystic fibrosis and promote organ donation. It was in a sense a passion that drove her, along with her deep love for her family, friends and network community. Eva's legacy continues today. In the last year, fund-raising projects have raised over $200,000 in her behalf toward cystic fibrosis and donation awareness.

I think of this young lady quite often and still read the updates that her family post on her Livejournal blog: 65RedRoses.
Over a year ago Eva brought great inspiration to me. As I struggled with the thoughts of my own mortality, Eva's advocacy for donor awareness helped me understand more about my own disease. I also realized that family and friends and love and God meant more to me than I knew. When you see things slipping away you start to understand the things you sometimes take for granted. It could be the simple act of saying, "I love you," in the morning when you say goodbye to your wife or husband on their way to work, or your children as they go off to school. It may be a "Thank you," to a friend or coworker or stranger.

Eva's post helped me understand how amazing people can become when faced with life-altering events. Thank you for this, Eva, for teaching me to see how much life could have stolen from me if I wasn't looking.

MARKVOORT, Eva Dien Brine

March 31, 1984 - March 27, 2010

What Now?

   Yesterday I found myself having difficulty drinking and eating without having some dribbling problems. I figured that it was related to my cold and I just had some swelling going on. This morning I woke up and it was more pronounced and I told Lois about it. She said, "I wonder if maybe you had a stroke?"
   Not ever having a stroke before, I replied, "How would I know? I've never had one."
   After I got to work I was talking to a co-worker and he said, "Maybe you had a stroke or something." This freaked me out so I called Lo and told her I was worried and she said call your doctor and see if you can get in today. After explaining to the nurse some of the symptoms that I was feeling, she told me to get to the ER because it sounded like it could be a stroke.
   So off I went with Lois and the first thing the RN said was, "Just looking at you, I'm thinking that you have Bells Palsy." She explained that it can often be triggered by a respiratory viral infection. That made sense, since I was coming out of a really bad cold. The doctor came in moments later and confirmed it. They did a CT scan of my brain to make sure I wasn't bleeding and found a sinus infection, too. I am on prednisone for the next 11 days and some other anti viral stuff. Plus at night I have to tape my eyelid closed because it doesn't want to close on its own.
   Just when I think things are settling down, wouldn't you know it. Ugh.

3/24/2011

   I have been sick since my last post. I left work on my first day back to work and went home and slept for three days. I finally made it out of bed and downstairs where I took up residence for another two days on the couch before I had to return to work yesterday. I am still dragging my heels and this cold has gone around our shop for the past two weeks. Some people have even caught pneumonia.
   Besides wanting to just die I have been okay. Although my psoriasis has taken a turn and the Enbrel quit working. Since then I have flared out and I am miserable. I also have psoriatic arthritis and it has affected my right knee and I am limping a lot and using a leg brace at work to walk around. Everything is a little uncomfortable. I was using the gabapentin to help with my muscle tension, but it just turns me into a zombie come morning. It would be nice to just feel well every so often rather than have one thing hit me after another.
   Not much else happening. When I feel better after this week I am planning on taking some pictures. I heard of a pretty cool place in American Fork that I want to visit. Hopefully I'll have some pictures to post real soon. Take care and thank you all for the great advice and comments last week. I am feeling much better this week.

3/16/2011

   I think I am going through a bout of depression. The past few weeks have been difficult. My body aches all the time and since my TIPS procedure I have had heart problems. I keep getting sharp pains in my chest and a throbbing that comes and go. After an E.K.G. and a stress test the doctor was unable to find anything wrong with me. I have also had some severe knee pain which has bothered me a great deal. I am wearing a knee brace but that doesn't seem to help very much.
   With all these things happening, emotion is building. The knowledge of how real this is makes me weep, mostly because of the pain I am feeling.
   I went to see my doctor last week. We discussed my general health and the fact that my MELD dropped down to 18 and a lower category. I was in the top 11 and now I am in the top 34. This was a bit hard to take. When the doctor left he said, "Don't worry, you'll get your liver. It might be this year, or the next, but you'll get one."
   This past week I just came up on my three year anniversary since I was diagnosed with liver disease. To hear the news that I may have to go through this for another year or so is frustrating. It feels like I am starting all over again and that hurts my heart. In the past week or two I have tried to sit and write. Nothing seems to work. I can't even sleep without waking up all throughout the night. I am so tired.
   I go back for labs in a month. Hopefully my numbers will change by then.
   That is all.

Hanging in There

   I'm sorry for not posting lately, but my life has been somewhat hectic. Ever since I had my procedure done, my health has changed considerably. My body aches all the time and I have been extremely tired. I think part of this is due to medicine change.
   I have my MELD checked later next week and soon after that I will be seeing my doctor. Hopefully we can figure out what's going on with me. I have had a lot of swelling happening so perhaps it's time we put the water pills back on the table.
   Thanks to all who have emailed me to see how I've been doing. I'm hanging in there and hope for positive results with my next appointment.
   Wishing everyone well.