Evelyn Grace. They call her Evy :-)
Wednesday, April 25, 2012
Tuesday, April 24, 2012
What Happened
To the handful of readers who ask about our blog,
We have missed you! It has been almost a year since we posted.
And what a difference a year makes!
(just realizing we need to update our profile too - we have a new baby who we LOVE :-)
Where can we begin in our attempt to catch you up on all our happenings?
First, allow us to begin where we left off. Joy Avery's one-year-old birthday party!
Her parents made such great efforts! We were all SO excited!
Then, IT happened, my body would not cooperate. We did not make it to the party.
It has taken this long to even talk about it.
The main thing, Joy Avery and ALL her guests had a good time!
A fun party! A fine Fiesta!
Attached is a pic taken on that JOYFUL day!
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.
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