Friday, October 29, 2010 "Don't Stand Up"
There is an old joke (notice I said old, not funny) where a man goes to the doctor. "Doctor, my arm hurts every time I move it." The doctor's advice: "Don't move it." I feel like that man. "Doctor, I pass out every time I stand up." "Don't stand up."
Early Monday morning we were on our way to Moffitt for treatment. I tried to walk from my front door to the car. As I got in the car, I passed out. When we arrived at Moffitt, I was immediately placed in a room, examined and treatment was started. Moffitt is now like a "second home" for Patra and I and we feel like we know most of our nurses and caregivers personally. I am well cared for and Monday was no exception. While these "syncopal episodes" are especially hard on Patra, she always feels relief once we get to Moffitt and they take over my care.
As a result, I am spending more time in a wheelchair when I am not in my recliner or in bed.
However, unlike the joke, there is a problem with simply not standing up - in just the short time that my orthostatic hypotension has been such a problem, my muscles have atrophied and I am getting weaker. Therefore, my doctors are working hard to get my blood pressure under control so that I can walk and get some exercise. The caveat is that I must be very careful not to fall and hit my head or otherwise seriously injure myself.
So it was an interesting day Wednesday at Moffitt. I received fluids and medication and then had an escort of nurses (together with Patra) as I walked down the hall. I think they were all more nervous than me. "Let us know if you feel faint. There is a wheelchair right behind you. If you need to, just sit down." I was proud that I was able to walk until they finally told me I had walked far enough and they would prefer that I sit down.
Unfortunately, Thursday was not as good so my "walking" was very limited. Once again, my "nasty little disease" is teaching me to live day by day.
There is a U.S. Postal Service commercial where the carrier is explaining to employees of an office that it is not necessary to weigh each package, as long as it "fits in the box, it ships." I felt like I was in the commercial the other day. The first thing that is usually done at Moffitt is to take my vital signs - I stand on the scales to be weighed and then my blood pressure and temperature are recorded. Because I am often "orthostatic" we sometimes have to forego the standing on the scale.
"Mr. Bugg, don't stand on the scale."
"No weigh?"
"No way."
"Why, no weigh?"
"You are way too pale."
"No way."
Over the next several weeks, God willing, and if I am able, I want to address some "hard topics" in my blog. I would ask that you pray that I would be able to address these topics clearly. It is one of my goals that this blog honestly address some of the issues that people walking through the "tall weeds" face. I pray that my thoughts might be an encouragement to others who are facing real challenges - not just illnesses - that life throws in our path. To give you an idea of some of the topics I would like to address.
Why hasn't God healed me?
How do you keep your mind properly focused when facing serious challenges?
What is heaven really like? Am I ready to go there?
A blog is really not a good format for addressing such issues. They are complex and require lengthy discussion. But I'd like to try and address them in a more devotional manner - probably the teacher in me that just won't be suppressed. So thanks for your prayers.
Some quick updates:
Andrew had his first post surgical checkup with the neurosurgeon yesterday (Thursday.) He is doing great and should be able to start back to school soon although he will be restricted from physical education activities. (The restriction is not going to make him happy.)
Avery is now officially 1 year old. As I've thought about it, she may benefit greatly from being born 6 days after Megan. We celebrated both of their birthdays together last week and it seems like she has had birthday celebrations every day this week. Good for her!
We are still on track for our visit in 10 days at the Mayo Clinic in Minnesota. I absolutely can't believe that they are having a blizzard. I watch the weather reports and have to add another blanket. I am cold already.
You continue to be the best friends and your support for our family means so much. May God bless each of you.
Until next Friday. God willing.
Bob
There is an old joke (notice I said old, not funny) where a man goes to the doctor. "Doctor, my arm hurts every time I move it." The doctor's advice: "Don't move it." I feel like that man. "Doctor, I pass out every time I stand up." "Don't stand up."
Early Monday morning we were on our way to Moffitt for treatment. I tried to walk from my front door to the car. As I got in the car, I passed out. When we arrived at Moffitt, I was immediately placed in a room, examined and treatment was started. Moffitt is now like a "second home" for Patra and I and we feel like we know most of our nurses and caregivers personally. I am well cared for and Monday was no exception. While these "syncopal episodes" are especially hard on Patra, she always feels relief once we get to Moffitt and they take over my care.
As a result, I am spending more time in a wheelchair when I am not in my recliner or in bed.
However, unlike the joke, there is a problem with simply not standing up - in just the short time that my orthostatic hypotension has been such a problem, my muscles have atrophied and I am getting weaker. Therefore, my doctors are working hard to get my blood pressure under control so that I can walk and get some exercise. The caveat is that I must be very careful not to fall and hit my head or otherwise seriously injure myself.
So it was an interesting day Wednesday at Moffitt. I received fluids and medication and then had an escort of nurses (together with Patra) as I walked down the hall. I think they were all more nervous than me. "Let us know if you feel faint. There is a wheelchair right behind you. If you need to, just sit down." I was proud that I was able to walk until they finally told me I had walked far enough and they would prefer that I sit down.
Unfortunately, Thursday was not as good so my "walking" was very limited. Once again, my "nasty little disease" is teaching me to live day by day.
There is a U.S. Postal Service commercial where the carrier is explaining to employees of an office that it is not necessary to weigh each package, as long as it "fits in the box, it ships." I felt like I was in the commercial the other day. The first thing that is usually done at Moffitt is to take my vital signs - I stand on the scales to be weighed and then my blood pressure and temperature are recorded. Because I am often "orthostatic" we sometimes have to forego the standing on the scale.
"Mr. Bugg, don't stand on the scale."
"No weigh?"
"No way."
"Why, no weigh?"
"You are way too pale."
"No way."
Over the next several weeks, God willing, and if I am able, I want to address some "hard topics" in my blog. I would ask that you pray that I would be able to address these topics clearly. It is one of my goals that this blog honestly address some of the issues that people walking through the "tall weeds" face. I pray that my thoughts might be an encouragement to others who are facing real challenges - not just illnesses - that life throws in our path. To give you an idea of some of the topics I would like to address.
Why hasn't God healed me?
How do you keep your mind properly focused when facing serious challenges?
What is heaven really like? Am I ready to go there?
A blog is really not a good format for addressing such issues. They are complex and require lengthy discussion. But I'd like to try and address them in a more devotional manner - probably the teacher in me that just won't be suppressed. So thanks for your prayers.
Some quick updates:
Andrew had his first post surgical checkup with the neurosurgeon yesterday (Thursday.) He is doing great and should be able to start back to school soon although he will be restricted from physical education activities. (The restriction is not going to make him happy.)
Avery is now officially 1 year old. As I've thought about it, she may benefit greatly from being born 6 days after Megan. We celebrated both of their birthdays together last week and it seems like she has had birthday celebrations every day this week. Good for her!
We are still on track for our visit in 10 days at the Mayo Clinic in Minnesota. I absolutely can't believe that they are having a blizzard. I watch the weather reports and have to add another blanket. I am cold already.
You continue to be the best friends and your support for our family means so much. May God bless each of you.
Until next Friday. God willing.
Bob
Comments
So glad Andrew is on the mend and the girls are absolutely adorable; I know your joy of being a grandparent.
As far as exercise, you can do some exercises laying down or sitting. It will help keep your muscles stronger. Take warm clothes, a couple of good hats (you lose more heat thru your head). Hopefully they have blanket warmers there!
Take care my friends.
Ted & Carol W
Good Morning, to you and Patra. We are so glad that we don't have to be in Clearwater to talk to our Lord about you. We stil have multi conversations with HIM every day about you and your situation.
We know that HE hears and that HE cares. Sometimes we feel tempted to TELL HIM what to do. However, we do KNOW and BELIEVE that HE wants what is best for you and your family. HIS love far outweighs eveything else.
Now, before you leave for MN, you may want to check with Hertz Rental for a Dog Team to get you there. Remember the GREAT ALASKAN RACE to Nome every year? The dog teams do a good job. So reserve yours now.
We LOVE you and continue to PRAY and PRAISE on your behalf. We hold you in our hearts.
Lex and Linda
Still here and still praying! Tyler and I think of you often and are so encouraged by your weekly posts. I know I'm looking forward to enjoying some devotional time under your wise tutelage. (You may not feel up to the compliment, but God is using you to impact so many lives for his kingdom through the lessons you share. Thank you!)
Know that we are thinking of you as you head up to MN (brrr - can your Florida blood handle it???) We're praying for some [at long last] hopeful and encouraging news. In the meantime - DON'T STAND UP! :)
BTW - I just loved the video of the girls from your last post. Watching them eat their cake had me laughing out loud. It reminded me of the twins on their first birthday - those different personalities really came out!
Love to you and the family,
Kari for the Mattingly's
Add my sister to your prayer list as well as she was diagnosed with Pagets disease, which is a breast cancer. She sees the specialist on Nov 8th.
Thanks and hope you are having a good day!
Ted & Carol W
Cheryl Kurtz (www.cherylsamyloidadventures.blogspot.com)
Thank you so much for giving the latest update. For most of us, we look forward to the Friday Blog. And we are encouraged, though I know your dad is having a difficult time and your mom must be exhausted, there is hope on the horizon.
I am so blessed by knowing your family.
You continue to be in our prayers many times throughout the day. The specific updates help us to be specific in our prayers.
Much love to all of you especially as we all express our thankfulness.
Mary