Happy Birthday to Miss Joy Avery!
.....more pics coming soon....
Thursday, May 19, 2011
Monday, May 16, 2011
Good To Go
Co-workers got me a snuggie for my 1st IV infusion, which is tomorrow!
The folks at the Institute called to remind me of the appointment.They advised me to start pushing fluids today, to dress comfy tomorrow,
and to bring a blanket.
(Some meds can be nephrotoxic, or hard on the kidneys. Lots of water will help the med
to be friendlier to the kidneys, which filter everything circulating in your body).
So that is it, I am good to go!
We'll keep you posted :)
I am leaving you with a gift - peace of mind and heart.
And the peace I give is a gift the world cannot give.
So don't be troubled or afraid.
John 14:27
(Thanks for the verse, son ;)
Tuesday, May 10, 2011
Update
And in exactly one week, I will have my first IV Infusion.
It is all set, I have the appointment on the 17th at 1:30 p.m.
Even though I would like to receive the treatments at home,
it will be at their facility, the doc here feels it will be more safe.
Sometimes we have to be the one to bend, don't we?!?!
Tuesday, April 19, 2011
Monday, April 11, 2011
Change Of Plans
It's official, we are back in!
I saw my internist last week and he is referring me to yet another new neurologist. The Mayo doc would like a local doc to "follow me" during the treatment plan with periodic lab work, tests, etc.
My appointment is soon, April 14th.
They are a fairly new group, called The Neurology Institute of San Antonio. According to their website, their facility appears to be fantastic, state of the art! Along with the doctor's offices, there is an area to receive IV treatments. There is also a place for Physical Therapy, and they are even equipped to offer support groups for their patients.
Although the place actually seems to be better set up for MS patients, perhaps the doctors there will be willing to "follow me" and my CISP.
What happened: Basically, a recent letter from my health insurance got me thinking. The letter is an invitation to join their Case Management Program. It is a program "available to members who may be experiencing chronic health conditions and/or complex medical problems." They want to help me and my family members better understand my medical care and treatment recommendations and provide assistance in obtaining services.
So, sounds like someone with my health insurance company will definitely be "following me."
Also, I recently received a letter from the health insurance folks letting me know that they have contracted with an Infusion Service, a separate company and a network provider, for the IV treatments. They offer the treatments in my home, which would be ideal.
Ultimately, I know the decision is up to me. I do not want to look back ten years from now and think I should have at least tried. I know there are risks involved with taking the Ig (immunoglobulin), and after careful consideration and much prayer, I have decided that I would like to try the IV Infusions again, along with the new med, Imuran. This is the treatment plan the Mayo Clinic recommended when I left there in October. It should take about six months to complete. Provided we get started right away, we should be back at the Mayo Clinic by the end of summer or early fall.
(As long as we don't have to go to Minnesota in January, I'm good :)
Prayer request: First of all, we would like to thank you for praying for us and our family as we go through this adventure. We already can see one potental conflict with the new group of docs. Since they offer the IV treatments at their facility, we feel certain that they are going to think it is a good idea for me to get the treatments there. The biggest problem with that is the fact that their facility is really far from where we work and live. (And the separate IV company is a network provider, which means less money we will have to pay out).
So, we are praying that the Institute will be understanding about my wanting to go with the separate company to receive treatments at my home instead of at their fine and capable facility.
And as far as a finding a support group; honestly, there is not much of a chance of finding a support group since there are only about a dozen or so of us. That's okay, because we have found our support group, and it is you! We are so grateful for each one of you! Your prayers and words of encouragement mean the world to us and help us tremendously.
"Pride goeth before destruction, and a haughty spirit before a fall."
Proverbs 16:18
Worth noting: These challenges we face each day continue teaching us humility. We are really learning to appreciate what we have in this life. We have been humbled, not so much by the illness itself, but by the outpouring of love from those around us. And who knows, our lessons in humility may be providing others with the opportunity to become better people. People have responded to our situation with so much trust and honesty. It is a beautiful thing, really beautiful.
I saw my internist last week and he is referring me to yet another new neurologist. The Mayo doc would like a local doc to "follow me" during the treatment plan with periodic lab work, tests, etc.
My appointment is soon, April 14th.
They are a fairly new group, called The Neurology Institute of San Antonio. According to their website, their facility appears to be fantastic, state of the art! Along with the doctor's offices, there is an area to receive IV treatments. There is also a place for Physical Therapy, and they are even equipped to offer support groups for their patients.
Although the place actually seems to be better set up for MS patients, perhaps the doctors there will be willing to "follow me" and my CISP.
What happened: Basically, a recent letter from my health insurance got me thinking. The letter is an invitation to join their Case Management Program. It is a program "available to members who may be experiencing chronic health conditions and/or complex medical problems." They want to help me and my family members better understand my medical care and treatment recommendations and provide assistance in obtaining services.
So, sounds like someone with my health insurance company will definitely be "following me."
Also, I recently received a letter from the health insurance folks letting me know that they have contracted with an Infusion Service, a separate company and a network provider, for the IV treatments. They offer the treatments in my home, which would be ideal.
Ultimately, I know the decision is up to me. I do not want to look back ten years from now and think I should have at least tried. I know there are risks involved with taking the Ig (immunoglobulin), and after careful consideration and much prayer, I have decided that I would like to try the IV Infusions again, along with the new med, Imuran. This is the treatment plan the Mayo Clinic recommended when I left there in October. It should take about six months to complete. Provided we get started right away, we should be back at the Mayo Clinic by the end of summer or early fall.
(As long as we don't have to go to Minnesota in January, I'm good :)
Prayer request: First of all, we would like to thank you for praying for us and our family as we go through this adventure. We already can see one potental conflict with the new group of docs. Since they offer the IV treatments at their facility, we feel certain that they are going to think it is a good idea for me to get the treatments there. The biggest problem with that is the fact that their facility is really far from where we work and live. (And the separate IV company is a network provider, which means less money we will have to pay out).
So, we are praying that the Institute will be understanding about my wanting to go with the separate company to receive treatments at my home instead of at their fine and capable facility.
And as far as a finding a support group; honestly, there is not much of a chance of finding a support group since there are only about a dozen or so of us. That's okay, because we have found our support group, and it is you! We are so grateful for each one of you! Your prayers and words of encouragement mean the world to us and help us tremendously.
"Pride goeth before destruction, and a haughty spirit before a fall."
Proverbs 16:18
Worth noting: These challenges we face each day continue teaching us humility. We are really learning to appreciate what we have in this life. We have been humbled, not so much by the illness itself, but by the outpouring of love from those around us. And who knows, our lessons in humility may be providing others with the opportunity to become better people. People have responded to our situation with so much trust and honesty. It is a beautiful thing, really beautiful.
Wednesday, April 6, 2011
Thursday, March 3, 2011
Changed For Good
"Count it all joy when we meet trials of various kinds."
James 1:2
Lots of you have been suggesting that I need to tell how my health issues are going. And I suppose that is true, although I am not sure where to begin. May I just write whatever pops into my head?
About a month ago, I rolled my ankle, so I had to get a ride to and from work with a very kind, generous co-worker, since it was near impossible for me to drive. The foot is better now, and I am even driving again. I missed the freedom that comes from being able to get yourself around.
We continue to try to think outside the box, and for a couple of months I have been trying a gluten-free diet. There is no celiac disease, I know because I was tested for it. But there are some noticable improvements with cutting back on the glutens, which are basically wheat, barley and rye. We are seriously reading labels now and realizing those little glutens can be hiding in lots of places, like ketchup, and even in lipstick!
2011 is already in full swing, it is almost spring. The holidays have come and gone, and it seems like a blur.
I am still amazed at all the happenings in 2010:
Julee gave birth to beautiful, healthy baby Joy in May! There was so much praying and preparing for her, it seemed like forever for her to get here. Now she is nine months old, I will post some pictures of her soon. Julee continues to teach running classes at UT. She does an outstanding job of juggling her work duties and her mommy duties.
Trey officially completed all of his course work in May. In September, he began his written comps and completed them and his oral defense in November. Now he is busy working on his dissertation while maintaining his job at UT. He hopes to be completed May, 2012.
Josef began his Master's program at the LBJ School of Global Policy at the University of Texas, and the Aggie became a Longhorn. We know that it is a very demanding program, and we are all impressed with his determination and progress. He also aims to be completed May, 2012.
Sarah graduated in May. She and Josef moved to Austin the same week baby Joy was born. It makes us happy that they have each other so close, and they definitely love it! Fortunately, Sarah found a great job nearby where they live, and she is working on obtaining her teaching certificate. She also continues working on her music.
Okay, now back to the health issue update: Since October, I have been quietly fighting the feelings of gloom and doom. Drawing close to God is the only thing that makes me feel better. The Mayo docs were not satisfied with my progress, and I followed the treatment plan completely. My test results were particularly devastating to me, especially since I was feeling so much better, and carried so much hope and expectations from the summer. They sent me back with instuctions to continue IV therapy every two weeks instead of weekly. They also prescribed another med, which supresses the immune system. Can you believe I have not been out to a restaurant since I started on it, nor have I gone near the mall, even for Christmas shopping. Who would have believed that was possible!
My insurance has not approved the IV Therapy, and I found out the hard way that they never approved the ones from last summer. And they are very expensive! My thoughts: I faithfully took the treatments once a week for three months and according to my test results, there was very little progress, if any. So, why would I expect six months of treatments every two weeks to work any better? It's not easy to justify the additional expense, as well as the health risks involved. I am due to go back to the Mayo Clinic in a few months. They told me to expect to stay longer this time, I am not sure what that means.
Actually, I am not really sure what to expect from this point. When expectations don't come true, the result is disappointment and unhappiness. You know, in a way expectations can be an attempt to control the future. I believe I can enjoy this time more if I approach it without any expectations. I am leaving myself with an openness in which anything can happen and be welcomed. Even if I have to live the rest of my life with my hands and feet tingling, it is well.
This situation may be shaking me, but through Christ I am more than my situation.
"She can laugh at the days to come."
Proverbs 31:25
James 1:2
Lots of you have been suggesting that I need to tell how my health issues are going. And I suppose that is true, although I am not sure where to begin. May I just write whatever pops into my head?
About a month ago, I rolled my ankle, so I had to get a ride to and from work with a very kind, generous co-worker, since it was near impossible for me to drive. The foot is better now, and I am even driving again. I missed the freedom that comes from being able to get yourself around.
We continue to try to think outside the box, and for a couple of months I have been trying a gluten-free diet. There is no celiac disease, I know because I was tested for it. But there are some noticable improvements with cutting back on the glutens, which are basically wheat, barley and rye. We are seriously reading labels now and realizing those little glutens can be hiding in lots of places, like ketchup, and even in lipstick!
2011 is already in full swing, it is almost spring. The holidays have come and gone, and it seems like a blur.
I am still amazed at all the happenings in 2010:
Julee gave birth to beautiful, healthy baby Joy in May! There was so much praying and preparing for her, it seemed like forever for her to get here. Now she is nine months old, I will post some pictures of her soon. Julee continues to teach running classes at UT. She does an outstanding job of juggling her work duties and her mommy duties.
Trey officially completed all of his course work in May. In September, he began his written comps and completed them and his oral defense in November. Now he is busy working on his dissertation while maintaining his job at UT. He hopes to be completed May, 2012.
Josef began his Master's program at the LBJ School of Global Policy at the University of Texas, and the Aggie became a Longhorn. We know that it is a very demanding program, and we are all impressed with his determination and progress. He also aims to be completed May, 2012.
Sarah graduated in May. She and Josef moved to Austin the same week baby Joy was born. It makes us happy that they have each other so close, and they definitely love it! Fortunately, Sarah found a great job nearby where they live, and she is working on obtaining her teaching certificate. She also continues working on her music.
Okay, now back to the health issue update: Since October, I have been quietly fighting the feelings of gloom and doom. Drawing close to God is the only thing that makes me feel better. The Mayo docs were not satisfied with my progress, and I followed the treatment plan completely. My test results were particularly devastating to me, especially since I was feeling so much better, and carried so much hope and expectations from the summer. They sent me back with instuctions to continue IV therapy every two weeks instead of weekly. They also prescribed another med, which supresses the immune system. Can you believe I have not been out to a restaurant since I started on it, nor have I gone near the mall, even for Christmas shopping. Who would have believed that was possible!
My insurance has not approved the IV Therapy, and I found out the hard way that they never approved the ones from last summer. And they are very expensive! My thoughts: I faithfully took the treatments once a week for three months and according to my test results, there was very little progress, if any. So, why would I expect six months of treatments every two weeks to work any better? It's not easy to justify the additional expense, as well as the health risks involved. I am due to go back to the Mayo Clinic in a few months. They told me to expect to stay longer this time, I am not sure what that means.
Actually, I am not really sure what to expect from this point. When expectations don't come true, the result is disappointment and unhappiness. You know, in a way expectations can be an attempt to control the future. I believe I can enjoy this time more if I approach it without any expectations. I am leaving myself with an openness in which anything can happen and be welcomed. Even if I have to live the rest of my life with my hands and feet tingling, it is well.
This situation may be shaking me, but through Christ I am more than my situation.
"She can laugh at the days to come."
Proverbs 31:25
Thursday, February 3, 2011
Happy Eight Months
Beautiful Baby Joy now claps her hands, crawls very fast, and pulls up on everything.
Friday, January 7, 2011
A Few Pics
We were all together for only a couple of days during the holidays,
but it was enough time for us to make some fun memories,
and get some pics.
but it was enough time for us to make some fun memories,
and get some pics.
Saturday, January 1, 2011
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