I have just come home from a long exhausting visit to my Dr. in Chicago. Actually, it wasn't a long visit but it was extremely exhausting. My condition remains the same in many ways, I am retaining less vitamin B12 in my system due to the autoimmune diseases which an expected issue. That seems to be the main change lately. The medication I am on is still holding it's own so to speak. However, we received some very bad news today. My Dr. has learned that the FDA plans to pull Midodrine from the market. This is the main medication I take for the Autonomic Dysfunction, it is the only option with this condition. The resons for pulling this medication are purely politicol. The FDA did requir the manufacturer to run studies on this medication recently. The studies showed that the medication was effective, however the FDA said that the studies did not show that the medication improved the quality of life for the patients. I remember well the time spent in the hospital and shortly after my diagnosis and don't want to relive that. I am asking anyone that is willing to help to write a letter to the FDA in care of the cardiac/renal department. If this medication is removed from the market there is nothing else I can take to help with the Autonomic Dysfunction.
Thanks, I hope to post something more fun soon. In the meantime Peace to you all.
Friday, August 27, 2010
Saturday, August 14, 2010
What would we do without our kids?
It has been quite a whirlwind kind of summer, but I think they all are. I love having the girls home and having time together. It seems like it goes by way to fast! The first part of our summer was spent taking kids to softball/tball games and practices almost every night of the week. We fit in VBS and Confirmation camp, a wonderful visit with Stephanie and then some home and swimming time. Our vacation was wonderful and again too short and now we are right into preparing for school again. Of course it's not like you just wake up and go to school anymore when summer is over. It takes a week to shop for everything on the school supply list, especially when you have 4 girls! After you get all the supplies you have to label everything, I mean everything. Then you have sports that start practicing more than a week before school even starts.
We have had a lot of fun this summer, Abigail and Elianna have really done great with swimming. Kalyn has had a great summer with sports teams, camps and now practice. Volleyball practice has started and she is very excited to be a captain and also a starting setter. Melissa went to LOMC for a theater arts week and put on a play of Snow White and the Six Dwarfs for us at the end of the week. We laughed so hard and unfortunately I forgot my video camera. Elianna still has the songs in her head with her own modifications. "I hope, I hope, it's home from work we go." You know the song, right?
I have taken a couple of knitting classes with my mom, we are making a shawl that I probably never would have attempted without this class and we are having fun! My parents still come out every Friday night to help us out with groceries. That is deffinately one task that is very hard for me to do. The girls (all 4 of them) look forward to Friday night visits with Grandma and Grandpa. I also took a class with Sandy on making a new bag. It also was great fun. I will post pictures when I can.
Jonathan has only golfed a handful of times, if even. He has enjoyed watching softball games (standing), I guess he needs to pace instead of sit down. He has found a couple of good books to keep him out of trouble. And of course we send him to work to get him out of the house.
Mocha took a nice vacation to Chateau Norene, a quaint little place in Rochelle. She gets wonderful treats there and just loves her visit.
So as summer comes to a close, think about all the blessings, hold them dear and look forward to next year!
We have had a lot of fun this summer, Abigail and Elianna have really done great with swimming. Kalyn has had a great summer with sports teams, camps and now practice. Volleyball practice has started and she is very excited to be a captain and also a starting setter. Melissa went to LOMC for a theater arts week and put on a play of Snow White and the Six Dwarfs for us at the end of the week. We laughed so hard and unfortunately I forgot my video camera. Elianna still has the songs in her head with her own modifications. "I hope, I hope, it's home from work we go." You know the song, right?
I have taken a couple of knitting classes with my mom, we are making a shawl that I probably never would have attempted without this class and we are having fun! My parents still come out every Friday night to help us out with groceries. That is deffinately one task that is very hard for me to do. The girls (all 4 of them) look forward to Friday night visits with Grandma and Grandpa. I also took a class with Sandy on making a new bag. It also was great fun. I will post pictures when I can.
Jonathan has only golfed a handful of times, if even. He has enjoyed watching softball games (standing), I guess he needs to pace instead of sit down. He has found a couple of good books to keep him out of trouble. And of course we send him to work to get him out of the house.
Mocha took a nice vacation to Chateau Norene, a quaint little place in Rochelle. She gets wonderful treats there and just loves her visit.
So as summer comes to a close, think about all the blessings, hold them dear and look forward to next year!
Tuesday, August 3, 2010
Rocky Mountain High
There is a song by that name I think. Colorado was a whirlwind of good weather, family and great times. All coming to an end too soon. The first few days were spent in the Highlands Ranch area with Dave, Gail and nieces - Stephanie, Susannah and Carrie. The girls spent time making friendship bracelets, swimming and learning new card games. These card games move way to fast for this old mom and cause too much stress to my system (I have this competitive spirit that comes out when we play games.) The weather surprisingly was only in the mid 90s this time and of course there is no humidity, WOW! Now some of you have met Gail. She is a wonderful cook and likes to feed people. She went out of her way to provide gluten free meals and much food for our girls and us.
The highlight of our trips is always a visit to BeauJos in Colorado Springs. It's a pizza place that is just a melt in your mouth kind of pizza and they have honey on the table for you to dip your crust in when you have eaten all the pizza off it. I know you are thinking it sounds gross but try it sometime with thick crust pizza. So on the way out to Colorado we talked about our favorite pizza place and decided that it would not happen this time, of course they wouldn't have a gluten free menu right. Well we were wrong! Thankfully they have a very very very good gluten free menu that is actually part of their official menu. Not just a paper print out. Needless to say we were pleased and did visit our favorite pizza place and it was wonderful! We also got a bonus and went on gluten free wednesday and got $5 off.
Jonathan took the girls on some fun hikes. Dinosaur ridge was a mile walk up a mountain road and then back down again. They were dog tired. I waited at the bottom and relaxed. The next day was our visit to Colorado Springs and he took them up to see St. Mary's Glacier (not officially a glacier because it is not floating.) This was a 3/4 mile hike up a very rocky path which ended up at a beautiful lake and snow! Niece Carrie joined us for this day out. Minor fall caused some knee scrapes and tears but that was taken care of with a nice blue bandaid. Again I stayed at the bottom Kalyn texted me and sent me pictures when they got up there. I visited with other hikers and encouraged some that looked at the rocky path and the length that they could do it. If my 6 year old and 4 other girls could walk it they certainly could. We rewarded our girls with the trip to BeauJos.
The highlight of our trips is always a visit to BeauJos in Colorado Springs. It's a pizza place that is just a melt in your mouth kind of pizza and they have honey on the table for you to dip your crust in when you have eaten all the pizza off it. I know you are thinking it sounds gross but try it sometime with thick crust pizza. So on the way out to Colorado we talked about our favorite pizza place and decided that it would not happen this time, of course they wouldn't have a gluten free menu right. Well we were wrong! Thankfully they have a very very very good gluten free menu that is actually part of their official menu. Not just a paper print out. Needless to say we were pleased and did visit our favorite pizza place and it was wonderful! We also got a bonus and went on gluten free wednesday and got $5 off.
Jonathan took the girls on some fun hikes. Dinosaur ridge was a mile walk up a mountain road and then back down again. They were dog tired. I waited at the bottom and relaxed. The next day was our visit to Colorado Springs and he took them up to see St. Mary's Glacier (not officially a glacier because it is not floating.) This was a 3/4 mile hike up a very rocky path which ended up at a beautiful lake and snow! Niece Carrie joined us for this day out. Minor fall caused some knee scrapes and tears but that was taken care of with a nice blue bandaid. Again I stayed at the bottom Kalyn texted me and sent me pictures when they got up there. I visited with other hikers and encouraged some that looked at the rocky path and the length that they could do it. If my 6 year old and 4 other girls could walk it they certainly could. We rewarded our girls with the trip to BeauJos.
On thursday we headed up into Estes park for the family reunion. Considering everyone had to travel we had a great turn out, about 50 family members gathered. Most of these people we only get to see at this reunion which takes place every 3 years. It's a great time to catch up and meet the newest members of the family. We always have a worship time together and it is just amazing to hear all the voices lifted in song. We stayed at the YMCA of the Rockies. Great facility with soooo much to do. Our family only went on 1 hike up in the mountains around Lilly lake. Jonathan and the girls, including my nieces took turns pushing me in a wheel chair so that I could accompany them. The rest of the time there was spent making crafts like; mosiacs, painting wood and ceramics, tye dying t-shirts, swimming, playing soccer, minature golfing, eating, and just visiting.
So I have spent this week recovering from our great times. I am so thankful to have such wonderful family and friends that continue to pray for me/us. It was a vacation that took a lot our of me but it was wonderful!
Thursday, July 15, 2010
Funny sayings
So tonight was Kalyn's last softball game. Tournament play ended so quickly but she had fun and I was amazed that my daughter could actually play softball, although I still think a big part of it is the uniform/shoes, and the social aspect. When Jonathan and Kalyn came home tonight we talked about the game and of course how it went. Kalyn stole a base and appearantly it was close but she was safe. Jonathan commented that she just needed to pick up her speed a little. He said that when a friends daughter is running the bases he always yells out "pick up the plow." Kind of funny, we did have to explain that one to Kalyn. So he turned to him and said "so, a farmer yells to his daughter, "pick up the plow." What does a pastor yell to his daughter?" Made me smile and think of all the silly things we say.
Are there any sayings that you would share??
Another one we have is from Jonathan's grandma and the girls just hate hearing it. When they forget to do something or grab something they were supposed to and they have to go all the way back upstairs or downstairs or worse yet outside, we say "if you don't use your head you have to use your feet."
Are there any sayings that you would share??
Another one we have is from Jonathan's grandma and the girls just hate hearing it. When they forget to do something or grab something they were supposed to and they have to go all the way back upstairs or downstairs or worse yet outside, we say "if you don't use your head you have to use your feet."
Monday, July 12, 2010
Good Samaritan??
I am so blessed with friends that come visit after not seeing each other for a long time and just start off where we left off. We are all so busy and sometimes spread out with miles and miles in between us but the friendship is still there. So in the course of that visit I was encouraged to read a great book. Now I am not finished yet but it is one of those reads that I must share.
The book is called Same kind of different as me. The book is a true story written by the two men who are so much a part of the story. It's one of those books that make you mad, encourage you on and just give you that wonderful full fealing of reading a good book. But most important for me it has given me one of those "aha" moments.
Why? Well let me start by saying that it helped that the sermon yesterday was on the parable of the good samaritan. The pastor (thanks hunny) took the parable and put it in a totally different perspective. Most of us read that parable and look at ourselves as the good samaritan, right? I mean we all do good deads, we give of our time and our money. But would you stop what you are doing and help someone even if it takes you out of your way and costs you an uncertain amoung of money? What if you put yourself in the shoes of the man on the side of the road, in need of help? Hmm, interesting thought.
That is what this book has cemented for me. The man who we would all believe is the "victim" in his life situation never looks at himself that way. I hope you pick this book up and enjoy it as much as I have. If you would like to borrow my copy I hope to finish it tonight. Let me know.
God's peace to all today and always!
The book is called Same kind of different as me. The book is a true story written by the two men who are so much a part of the story. It's one of those books that make you mad, encourage you on and just give you that wonderful full fealing of reading a good book. But most important for me it has given me one of those "aha" moments.
Why? Well let me start by saying that it helped that the sermon yesterday was on the parable of the good samaritan. The pastor (thanks hunny) took the parable and put it in a totally different perspective. Most of us read that parable and look at ourselves as the good samaritan, right? I mean we all do good deads, we give of our time and our money. But would you stop what you are doing and help someone even if it takes you out of your way and costs you an uncertain amoung of money? What if you put yourself in the shoes of the man on the side of the road, in need of help? Hmm, interesting thought.
That is what this book has cemented for me. The man who we would all believe is the "victim" in his life situation never looks at himself that way. I hope you pick this book up and enjoy it as much as I have. If you would like to borrow my copy I hope to finish it tonight. Let me know.
God's peace to all today and always!
Thursday, June 17, 2010
The Dog Days of Summer
Well summer is here and of course what am I doing... thinking about a fall brunch. Yup!
I volunteered our church for the Womens fall brunch in October and the planning has started. I really have enjoyed the few that I have attended and hoped to help make this one just wonderful. The topic is Preparing your hearts, mind and home for the holidays. Does anyone have any suggestions for presentations. The committee is very willing to help pick something but I would really like to get input from you all. Is there someone you have heard speak or something you can think of to put together that would be great for all ages of women. We would like to have some of the younger women and also the kids take part in this day. Here are some of my thoughts. These are just my random thought, not those of the committee.
1. The devotion could be on something like gratitude. Gratitude in giving, receiving and sharing. This is something I know I need to hear about.
2. We could share recipes for our favorite holiday foods - people could bring cards and we can make copies. (Amy could make some great baked treats - just kidding :).
3. A speaker of some sort???
4. Someone could present/prepare a simple gift idea
5. Needs
The same type of thing could be for the kids too.
What do you think? Any ideas or suggestions?
I volunteered our church for the Womens fall brunch in October and the planning has started. I really have enjoyed the few that I have attended and hoped to help make this one just wonderful. The topic is Preparing your hearts, mind and home for the holidays. Does anyone have any suggestions for presentations. The committee is very willing to help pick something but I would really like to get input from you all. Is there someone you have heard speak or something you can think of to put together that would be great for all ages of women. We would like to have some of the younger women and also the kids take part in this day. Here are some of my thoughts. These are just my random thought, not those of the committee.
1. The devotion could be on something like gratitude. Gratitude in giving, receiving and sharing. This is something I know I need to hear about.
2. We could share recipes for our favorite holiday foods - people could bring cards and we can make copies. (Amy could make some great baked treats - just kidding :).
3. A speaker of some sort???
4. Someone could present/prepare a simple gift idea
5. Needs
The same type of thing could be for the kids too.
What do you think? Any ideas or suggestions?
Tuesday, June 8, 2010
WHO????
I have been struggling with "who I am" since I got sick. What I came to realize recently was that my curcumstances may have changed but "who I am" hasn't changed .
I am...
a christian
a wife
a mom
a daughter, niece, cousin, aunt, sister-in-law (all of those bloodline things)
a runner (yup! it will always be in me)
a health and wellness advocate (kind of funny isn't it)
a dog lover
somewhat artistic
someone who loves a project - especially when you can use power tools
a lover of the outdoors and nature (minus the bugs)
a reader
grateful for friends and family!
a person who likes order and cleanliness
Thankful!!
What am I not...
a swimmer
a tree climer
a skydiver
a drinker
a smoker
a cusser (that word probably ages me)
OLD
So who are you?? let me know I would love to hear from you:)
I am...
a christian
a wife
a mom
a daughter, niece, cousin, aunt, sister-in-law (all of those bloodline things)
a runner (yup! it will always be in me)
a health and wellness advocate (kind of funny isn't it)
a dog lover
somewhat artistic
someone who loves a project - especially when you can use power tools
a lover of the outdoors and nature (minus the bugs)
a reader
grateful for friends and family!
a person who likes order and cleanliness
Thankful!!
What am I not...
a swimmer
a tree climer
a skydiver
a drinker
a smoker
a cusser (that word probably ages me)
OLD
So who are you?? let me know I would love to hear from you:)
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