More Medical Information

I neglected to give you some important information about the medication. The name of it is Midodrine hydrochloride. It is being withdrawn because the FDA is claiming the post approval studies done were inconclusive, they not only wanted to see that it is helping the patients but also that it has improved the quality of life. Personally speaking I cannot imagine life without this medication. The drug is available in generic form but the companies will not manufacture it at all if this is not handled.

If you would like to read the news release it is online just search midodrine fda news. The only names my doctor has available to write to are Drs. Stockbridge and Dr. Temple in Cardiorenal Division at the FDA.

This is only one of the issues that I deal with unfortunately but it is important to stay on top of it. Thank you so much for your help!

A Plea for Help!

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.

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!

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.

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!