Eye Guy

Saw my Opthalmologist today. He was very pleased and said I exceeded all his expectations, considering the mess he was confronted with on my first visits. I have either continued to improve or have stabilized. My vision is 20/25!
There is a young lady who underwent a surgery to remove a growth in her head, like mine. They then put her on massive doses of prednisone for growths in her orbits, which did nothing for her sight. The growths suffocated her optic nerves and she is blind. But, they also put her on a 6-7 month round of Cladribine and Interferon and the growths on her brain, heart and right (I think) arm broke up and disappeared.
I sent the info to my doc, and we shall see.

Fatherhood?!!

We learned Thursday/Friday that Carrs in Johnson City, Tennessee has found embryos for us. I'm excited for my wife. Me, I'm scared to death. The meds I take often make me a clumsy oaf. I forget things and trip over my own two feet. I just want our child to be safe. I, also, want to be young enough for him/her/them to enjoy and for me to enjoy them. I'll be 49 in May.
I just wanna be a good Daddy!

Video clip

Met with my Pastors' wife to go over the video clips' progress and exchange some ideas. We're shooting for informative, yet comforting and inspirational.
Things went very well, and I'm excited about where we're headed with it. We can even record a song on campus that my ECD group leader would like included on the site.
Man I'm excited!!

Wellbutrin, Dosage, Insurance, Formulary

My Medicare Replacement carrier has decided my already generic anti-depressant is too pricey. My Family Physician had to barter with them to decide what they would cover. So, now, after 9 years of using a time released med. that never once gave me a problem, they have changed to a twice a day formula. It has to be taken 8 hours apart and not in the evening, because it will keep me awake.
Well, I start the med, and, on the second day of it, I begin waking up at 3-5 AM and can't get back to sleep (I stay up 'til 1:30 or 2:00 AM to be with my wife, as she works the 3-11 PM shift). After several days of this, I'm exhausted. So, I've taken matters into my own hands and cut back to one pill in the AM only.
I immediately began sleeping through the night, except for the dog waking me up for his nighttime grass watering missions. But, I go right back to sleep. So far, the reduction has not affected my mood, except for an improvement due to sleeping well.
It is ridiculous to change a med after 9 yrs of successful useage because of cost, especially when it was already the generic form!! Profit over health, I guess!.
By the way, the xanthum (ECD growth) in my head begins at my pituitary gland, affecting testosterone production, mood and thirst, in my case. The thirst is under control. But, I need hormone therapy for the others. Wellbutrin is, of course, for mood/depression, and I apply a testosterone replacement gel every other day. I'm an expensive item :-).

Homeward Bound

Getting ready for a weekend trip to Columbia, SC. At least it's not Summer! It's my Bro-in-laws' birthday/retirement party, and I'm looking forward to seeing my family.
My nephew-in-law (:-) ) is participating in his Spring football scrimmage for the USC chickens, gamecocks, whatever lol. We'll be there for that.
Then Sunday morning, Moms' home cooked breakfast. Mm-mm!!
It is confusing making sure all my meds are packed along w/ the other necessities. But, I'm loaded for bear this time. Ya never know!

Another Rotten Night

Saturday night I could not get to sleep. I tried counting backward by sevens, a little Flexoril, then a little Tylenol PM. Finally, at about 4 am, my lights went out. I was determined not to miss the Easter service at church. So, My wife woke me at about 9:30, and the rush was on. I did get some coffee down and a little yogurt mix I make, even got my supplements down.
So, we were about 1/2 an hr late. But, we made it to church for a wonderful service and then went to the Chef's Table for an Easter brunch. Very nice. Only problem is, the lack of sleep Saturday night left me rubbery legged for today. Made for a rough walk. But, we did have a nice day and began picking plants for redecorating our yard.

Progress :-)

Thought this was worthy of entering, as it is exciting news for those of us w/ the disease and caregivers.

Dear ECD Global Alliance Members,

I wanted to share with you some of the hopeful things that are happening within the organization.
In the past couple weeks we have been contacted by three different research teams interested
in beginning new research studies on ECD.
One team represents a group of doctors we have been talking with for some time about getting
an ECD research project started. Last week we saw definite movement toward that goal.
The other two teams have contacted the ECD Global Alliance, unsolicited, to ask if our organization
would be willing to collaborate on a possible ECD study. Of course the answer was a resounding,
“Yes.” It might be that collaborations will be formed between two or more of these teams to
form fewer, yet stronger, studies. All of the proposals being considered are geared toward
learning more about ECD as opposed to clinical trial type studies.
We also hosted an ECD Global Alliance Medical Review Board this week.
It was very uplifting to listen to these ECD knowledgeable doctors talk about their work and
ideas related to ECD research. This group of doctors is certainly interested in learning more
about ECD so as to have the most effective and rational treatments available.
As all this is happening we are also making preparations to communicate out to the world that
we are prepared to award an ECD research grant of our own.
None of us can predict where all of this discussion will lead. Any studies that come to fruition
will take time, and it is impossible to know how many studies might be needed before meaningful
advances in the understanding of ECD can be achieved and translated into better treatments.
However, the fact is that researchers are interested in learning more about ECD, and since there
is now an accessible patient population available in the form of our organization, more possibilities
exist. This is all very promising and shows that “Together we can make a difference.”
Thank you for being part of the organization. Because of you all this is possible. If you are
interested in participating in a possible future study and wonder what you might do, the best thing
at this time is to gather together your medical information, including reports and CDs of scans,
biopsy reports, test dates, etc. If you need any help in doing this, please contact the organization
at this email address and we will do our best to guide you through the process.

This was sent to our members by Kathy, our fearless leader.

Visitation w/ the Physician

Had a nice visit w/ the doctor yesterday. Had a prescrip. that they wouldn't authorize a refill on until I came in to the office.
So, while I was there, I had her check out my left arm. It's been giving me trouble when I drop to do push-ups or reach at shoulder level or higher. Felt bone deep betw. my shoulder and elbow ( Bicep, humerus....). Everything checked out, though, and she advised I lay off the push-ups for a week or so. Prescribed a cream for a rash I've been getting on my shins periodically ever since I had radiation treatments in 2007. Oh, and refilled my prescrip so I don't run marathons in my sleep :-).
Scheduled a full physical, since it's been a year and a half, too. I look forward to that. I just love the way they ask, "Is this uncomfortable", when they're checking a guys prostate. Duh! Yes, it's a tad uncomfortable. But, it needs to be done. I'm approaching 50.
Man!! That just doesn't seem possible. Where did all those years go?!! Wasn't it just yesterday that I was 21?!! I wouldn't go back, though. The years have been way too good to me. I might miss out on meeting my beautiful bride if I go delving into the past. Too high a price pour moi.
Then we had a nice lunch at Chili's, went to Home Depot, picked up my "drugs" and headed home to our little buddy. We had a really nice day.