It's been over a year that my body has been fed steriods.
Yesterday, June 10th...NO STERIODS, YEAH !!!!!
You might be wondering how I am feeling?
BLESSED would be the most appropriate response.
(as a side note though, there is a bit of muscle fatigue going on)
I'm not sure if it was the change in medication but I could not sleep last night. Have you had those nights where you lay in bed, your body is exhausted, you know you need to sleep and your mind won't shut off? That was last night for me.
Here's some of what I couldn't stop thinking about....
bumble bees, frogs, hawks, detours, bicycle pedals, lemonade, a deck of cards...I am sure there were more but that's a start.
I know many of you know what these things are about but if you don't I will fill you in, one item each day until I run out.
Bumble bees: Did you know I have a bumble bee tattoo? Some might ask "why a bumble bee?" others might ask "WHY A TATTOO?"
A couple of years ago when I was asked by my younger sister to do a triathlon with her I picked up a book and began to read how someone like me might accomplish this type of a goal. In the book I read that aerodynamically the bumble bee should not be able to fly. Apparently, scientists have studied this and based on the size and weight of the bees body those wings should not be able to carry it into flight. The statement was something to the effect "Lucky for us no one ever told the bee that." I find that to be a very inspiring fact.
Quote for today: "Nothing is impossible to a willing heart." -John Heywood-
Have a great day.
Kris
Monday, June 11, 2007
Friday, June 8, 2007
It's Friday
Hi everyone,
I didn't post anything yesterday because I was wiped out. I need to continue to keep track of activity as I am not sure if it was activity or the methotrexate that zapped me of my energy. Good News, it's Friday and I am feeling much better.
Did you happen to pick up the book "Lean on Me" by Nancy Davis?
Not only is she mom, wife and author but she is the founder of "Center Without Walls".
She recognized that doctors and researchers were all working on really important stuff related to MS but they weren't talking to each other.
How much stronger is a rope of strings braided together than the strings independently?
The other night I read on the Myositis bulletin board the exciting words of a woman announcing she was pregnant. I couldn't stop thinking about her and what I might know that could help her and her doctors to bring this new life into the world safely. So, I emailed Johns Hopkins new Myositis Center as well as the Executive Director of the Myositis Association and the Chairman of the Myositis Associations Medical Advisory Board. I asked how I might be able to help get rheumatologists, perinatoligists, OB/GYN's and internal medicine doctors talking and solving the challenges this woman (and others) may have in front of her.
I'll let you know if I get any feedback.
Have a great week-end.
Here's my quote for the day:
"The more I give to thee, The more I have..." William Shakespeare.
My Grandpa Gulbrand wrote words very similiar in a letter to me when I was in college. I wonder if he knew he was quoting Shakespeare?
Kris
I didn't post anything yesterday because I was wiped out. I need to continue to keep track of activity as I am not sure if it was activity or the methotrexate that zapped me of my energy. Good News, it's Friday and I am feeling much better.
Did you happen to pick up the book "Lean on Me" by Nancy Davis?
Not only is she mom, wife and author but she is the founder of "Center Without Walls".
She recognized that doctors and researchers were all working on really important stuff related to MS but they weren't talking to each other.
How much stronger is a rope of strings braided together than the strings independently?
The other night I read on the Myositis bulletin board the exciting words of a woman announcing she was pregnant. I couldn't stop thinking about her and what I might know that could help her and her doctors to bring this new life into the world safely. So, I emailed Johns Hopkins new Myositis Center as well as the Executive Director of the Myositis Association and the Chairman of the Myositis Associations Medical Advisory Board. I asked how I might be able to help get rheumatologists, perinatoligists, OB/GYN's and internal medicine doctors talking and solving the challenges this woman (and others) may have in front of her.
I'll let you know if I get any feedback.
Have a great week-end.
Here's my quote for the day:
"The more I give to thee, The more I have..." William Shakespeare.
My Grandpa Gulbrand wrote words very similiar in a letter to me when I was in college. I wonder if he knew he was quoting Shakespeare?
Kris
Wednesday, June 6, 2007
Put it all into perspective...
Hi,
I was feeling sorry for myself a few minutes ago. On my way home from dropping Jake off at daycare I envied the people riding their bikes and running. Just two years ago I was running, biking, swimming, and enjoying the excitement of triathlons. That's when it hit me...let's put this all into perspective.
I am not running, but I can walk. I can't walk a 5K but I can walk around the zoo and to the ice cream store with my kids and I couldn't do that last summer.
I am currently able to do one set of 10 arm exercises with three pound hand weights. In April, I could only do three reps. Last summer I wouldn't have been able to close my hand to hold a hand weight.
My goal in this is to live my life as an example for Jake and Emma and anyone else watching. I will show them strength, courage, perservance and what a positive attitude can do for a person.
Today, I hope you are able to put those things that get you down into perspective.
What a blessing today is!
Quote for today:
"Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
Kris
I was feeling sorry for myself a few minutes ago. On my way home from dropping Jake off at daycare I envied the people riding their bikes and running. Just two years ago I was running, biking, swimming, and enjoying the excitement of triathlons. That's when it hit me...let's put this all into perspective.
I am not running, but I can walk. I can't walk a 5K but I can walk around the zoo and to the ice cream store with my kids and I couldn't do that last summer.
I am currently able to do one set of 10 arm exercises with three pound hand weights. In April, I could only do three reps. Last summer I wouldn't have been able to close my hand to hold a hand weight.
My goal in this is to live my life as an example for Jake and Emma and anyone else watching. I will show them strength, courage, perservance and what a positive attitude can do for a person.
Today, I hope you are able to put those things that get you down into perspective.
What a blessing today is!
Quote for today:
"Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1
Kris
Sunday, June 3, 2007
Sunday funny...
This morning in church, just after Pastor Henrichs started his sermon Jake leaned over and said "mom, can I tell you something in your ear?" I responded "Quietly." He said "Isn't that so funny, Jesus spoke to the juice!" (Jews).
It makes me smile to think about it.
enjoy.
Kris
It makes me smile to think about it.
enjoy.
Kris
Did you know...
Did you know that autoimmune diseases are genetic? The following is information I cut and pasted from www.aarda.org.
4. Know that autoimmune diseases run in families. Current research points to a genetic component in autoimmune diseases. However, autoimmune diseases are not typical genetic diseases like, for instance, sickle cell anemia, where there is a specific gene mutation. With autoimmune diseases, multiple genes are involved that collectively increase vulnerability or susceptibility. Thus, what is inherited is not one specific gene but several genes that increase risk. As a result, autoimmune diseases tend to “cluster” in families - not as one particular disease, but as a general tendency to the autoimmune process and, consequently, different autoimmune diseases. For example, one family member may have autoimmune hepatitis; another, celiac disease; another, rheumatoid arthritis.
5. Do your own family medical history. Given the family connection, knowing the health histories of other family members is critical. For example, if your grandmother or father or sister or uncle has an autoimmune disease, you could be more susceptible to developing one yourself. Take an inventory of your family health problems, expanding your research beyond your immediate family to include grandparents, aunts, uncles, cousins and other relatives. Once you know your family history, share it with other family members and your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.
This became somewhat of a conversation piece within the "Luebke" family over the past year as we found out that autoimmune diseases don't just effect you as you get older but can attack even the very young. We're positive. We are positive and full of faith and hope. GO TEAM LUEBKE.
I would encourage you to read more from the website, www.aarda.com and begin your family medical health history documentation. I'm not sure the best way to collect all the information but I am sure someone reading this has the answer to that question. Let me know your thoughts.
I just told Bill that putting a few great minds together we might be able to create a survey or guide to provide to family members to assist in collecting and then sharing the information with each other and their doctors. Once the bugs are worked out we can share it with others that have lives effected by autoimmune disease.
OK, that's enough for a Sunday afternoon. I was lead down this path this afternoon by a conversation I had at our church picnic. A friend told me about Dr. Weil and his "anti-inflammatory diet". The picnic got rained out around 2:00 PM and immediately upon walking in the door Jake asked if he could play on the computer. He loves the computer.
It took awhile (hours) for "my turn" but once I got my chance at the internet I found a lot of interesting stuff.
Have a great week.
Almost forgot my quote for the day:
"Faith can give us courage to face the uncertainties of the future." Martin Luther King Jr.
Take Care.
Kris
4. Know that autoimmune diseases run in families. Current research points to a genetic component in autoimmune diseases. However, autoimmune diseases are not typical genetic diseases like, for instance, sickle cell anemia, where there is a specific gene mutation. With autoimmune diseases, multiple genes are involved that collectively increase vulnerability or susceptibility. Thus, what is inherited is not one specific gene but several genes that increase risk. As a result, autoimmune diseases tend to “cluster” in families - not as one particular disease, but as a general tendency to the autoimmune process and, consequently, different autoimmune diseases. For example, one family member may have autoimmune hepatitis; another, celiac disease; another, rheumatoid arthritis.
5. Do your own family medical history. Given the family connection, knowing the health histories of other family members is critical. For example, if your grandmother or father or sister or uncle has an autoimmune disease, you could be more susceptible to developing one yourself. Take an inventory of your family health problems, expanding your research beyond your immediate family to include grandparents, aunts, uncles, cousins and other relatives. Once you know your family history, share it with other family members and your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.
This became somewhat of a conversation piece within the "Luebke" family over the past year as we found out that autoimmune diseases don't just effect you as you get older but can attack even the very young. We're positive. We are positive and full of faith and hope. GO TEAM LUEBKE.
I would encourage you to read more from the website, www.aarda.com and begin your family medical health history documentation. I'm not sure the best way to collect all the information but I am sure someone reading this has the answer to that question. Let me know your thoughts.
I just told Bill that putting a few great minds together we might be able to create a survey or guide to provide to family members to assist in collecting and then sharing the information with each other and their doctors. Once the bugs are worked out we can share it with others that have lives effected by autoimmune disease.
OK, that's enough for a Sunday afternoon. I was lead down this path this afternoon by a conversation I had at our church picnic. A friend told me about Dr. Weil and his "anti-inflammatory diet". The picnic got rained out around 2:00 PM and immediately upon walking in the door Jake asked if he could play on the computer. He loves the computer.
It took awhile (hours) for "my turn" but once I got my chance at the internet I found a lot of interesting stuff.
Have a great week.
Almost forgot my quote for the day:
"Faith can give us courage to face the uncertainties of the future." Martin Luther King Jr.
Take Care.
Kris
Friday, June 1, 2007
A new change, a good sign....
I just got off the phone with Vicki Jacobs, a Physicians Assistant from the endocrinologists office. We have a plan for getting off steriods. YEAH.
As many of you know, I have been on steriods for over a year now. A couple of months ago I changed from Prednisone to Hydrocortisone. My body tolerated the change and two weeks ago I reduced the medication from 25 mg daily to 20 mg. The biggest change was that I no longer had to take the steriod at night. I believe that has helped some of my sleeping issues (inability to sleep).
Starting tomorrow I will reduce the medication to 15 mg daily and if my body tolerates that change I can stop taking it completely on Sunday, June 10th. He actually said a week but we'll be camping and if I am going to have any serious side effects I prefer to be close to home rather than in a tent.
I'll keep you posted.
Kris
As many of you know, I have been on steriods for over a year now. A couple of months ago I changed from Prednisone to Hydrocortisone. My body tolerated the change and two weeks ago I reduced the medication from 25 mg daily to 20 mg. The biggest change was that I no longer had to take the steriod at night. I believe that has helped some of my sleeping issues (inability to sleep).
Starting tomorrow I will reduce the medication to 15 mg daily and if my body tolerates that change I can stop taking it completely on Sunday, June 10th. He actually said a week but we'll be camping and if I am going to have any serious side effects I prefer to be close to home rather than in a tent.
I'll keep you posted.
Kris
Live and Learn
Yesterday was a really good day. After completing my daily dose of physical therapy (one day I work on my arms, abs and neck, the next day my legs, abs and neck) I decided to take a 15 minute walk around the neighborhood. Our neighbor Mary was just starting her daily walk so we walked together. I'm pretty sure we walked longer than 15 minutes and I am absolutely sure I walked at a quicker pace then I would have if I had been walking solo. It was wonderful.
Jake and Emma have swimming lessons on Thursday afternoons and I have been using that time to get in the pool and do some water walking. I walked for 10 minutes. (I love lap swimming, that activity is not yet approved by my physical therapist).
Here's my live and learn:
When I'm feeling good I have to be very careful not to over do it. Today I am pretty beat (fatigue is higher than normal). The great news is that I can take a nap and I am listening to my body and I am learning. Until I get stronger 15 minutes of exercise type of activity is my limit. When I think it's time to increase that, it will be in shorter intervals, maybe adding two minutes instead of ten would be a smarter choice.
That's all for now. Thanks for checking in.
Here's my quote for the day. It's from Nancy Davis, author of "Lean on Me"
"Move forward every day; seek new ways to build strength and confidence in your journey toward health."
Kris
Jake and Emma have swimming lessons on Thursday afternoons and I have been using that time to get in the pool and do some water walking. I walked for 10 minutes. (I love lap swimming, that activity is not yet approved by my physical therapist).
Here's my live and learn:
When I'm feeling good I have to be very careful not to over do it. Today I am pretty beat (fatigue is higher than normal). The great news is that I can take a nap and I am listening to my body and I am learning. Until I get stronger 15 minutes of exercise type of activity is my limit. When I think it's time to increase that, it will be in shorter intervals, maybe adding two minutes instead of ten would be a smarter choice.
That's all for now. Thanks for checking in.
Here's my quote for the day. It's from Nancy Davis, author of "Lean on Me"
"Move forward every day; seek new ways to build strength and confidence in your journey toward health."
Kris
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