Day +5: Sleep Deprivation, Great Energy, Perfect Wife.


Last night was a pretty rough night for sleep! They have us on a steroid called Prednisone to taper us down from the really high doses of IV steroids, and the stuff just seems to leave you wired all day. It doesn’t give me the high energy where I want to jump around and do stuff, but it just makes it impossible to take deep naps or really feel sleepy at night. When I finally went to bed, it was about 6:30 in the morning  and the sky was already turning blue! One of my goals today is to figure out a way to get sleep tonight!

So all of the water weight and swelling has finally started draining from my body. Twenty trips to the bathroom in the night doesn’t help a person to sleep. Here’s a fun fact: I peed 9.5 lbs of water weight, and I’m not done yet! Gotta say, it feels good to get all the chest and leg swelling down. It is so much easier to breathe.

I only slept a couple of hours and then waited for my daily meeting with Dr Burt. He came by himself again today and told me my numbers are all looking good and that so far everything is going great!  This is always a good way to start a day.

Today my white blood count is still TLTC, Platelet count is 71 (I’ve got to keep it above 20 to avoid a blood transfusion ) and hemoglobin is at 10.4 (transfusion at 8 or less). So this is great news for me today, because I won’t need a blood transfusion!


I was able to get my morning spin in and get cleaned up. The nurse came by and gave me my Neupogen shots. I am anxiously waiting for these puppies to kick in and get my WBC up! Ten thousand bucks injected into my stomach in seconds for my insurance to pay luckily. That could have bought my dream bike!

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Liz came over and brought me dinner from this awesome Greek place around the corner. We were able to eat together and have a great time talking.  Sadly, this is her last visit with me. After we ate, she went on one last walk with me that was pretty sad, because I’ll really miss those walks with her. There was also a feeling of excitement knowing that I’m getting close to being done here too, and I won’t be far behind her.  After the walk, we came back to my room and talked awhile. We are both really sentimental people and we talked about all the experiences of Chicago that we will always cherish. We talked about our long walks around town to Millennium Park, the Bean, Sears Tower, the Chicago Theatre, and all of the parks and museums that we loved to take Olivia to. Also, the great times we had at our hotel and at my sister Laurie’s house. We were thinking about the special experiences we had in this hospital with our walks in the hallways and when she was taking Olivia to the parking garage roof for me, and Olivia showing off through the glass of the waiting room window. We reminisced about all of our fun talks, and hanging out here in my hospital room. Even though this experience has been a trial, it’s also been a massive blessing for our family. We’ve never had this much time to be able to spend together and bond. We were a family here, and that’s going to be special forever. This place has saved my life, or at least quality of life and given us so much hope have a bright future. Even though we’re  obsessed  with outside sports and activities, and I’ve been locked in here like a hamster, this place will always be hallowed ground for me and my family.

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Before Liz left, she did something that I’ll never forget for the rest of my life. She started crying and hugged me goodbye and told me that I was her hero and that she’s proud of me. Hearing this from Liz was the most special thing I could have ever heard her say. The fact of the matter is, she is my hero.  While I’ve been in here, she has been running all over Chicago, with a toddler, bringing me stuff I need, surprising me with little treats, hanging pictures all over my walls to keep me motivated, taking care of Olivia, still dealing with all of our bills and insurance issues, and a million little things I can’t even think of right now. She has been doing all of this while being pregnant! Liz is absolutely amazing. How I tricked her into marrying me, I’ll never know. The only reason I’ve made it this far, and the only reason I’m here in Chicago right now getting better, is because of her. Liz is the most amazing wife and mother. Liz, you’re my hero!

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I took comfort in knowing that she is not leaving me laying in bed and in the height of my  nausea. I’m no longer in pain and I’ve now had three days in a row of feeling really good and getting stronger. I just keep feeling better and better. So many of my daily MS symptoms that I’ve been feeling for years have totally stopped already. I’m down to one shot of Zofran a day for nausea, and I continue to improve. At this rate, I’ll be right behind her!

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Only two goals now for the day remaining.  I got my second walk in, which I did a mile in my record time since I’ve been in here. Also, after my walk, I noticed the first tingles of bone pain moving through my legs from the Neupogen shots. This only lasted few minutes before it went away. Second goal, early bedtime. I plan on accomplishing this with the help of my little friend Ambien. Good night!

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