Improvements

Well. it's been a while. It's easier to deal w/ just the one blog. I'm lazy.
I started cutting the synthroid tabs in 1/2, and w/in a week, my balance was much better. The doc didn't know why. But, at least I'll be saving us a tad of money. Every little bit helps! I'm finishing off a free pack he gave me, and then heading into a regular 30 day prescrip that will now stretch for 60 :-).
I tried 1/2 ing my clonazepam (klonopin), too. That's to keep me from kicking my better 1/2 out of bed in my sleep. Works just fine. One more cheap med that will be even cheaper. Another :-).

Hypothyroidism & Testosterone "Implants"

Well, finished pt w/ flying colors. By the way, what are "Flying Colors"? The brown of a grizzly in hindsight as we're having a cardiac sprinting to shelter? Anyway, he and I discussed how far I could get improving my balance if my poor balance is due to medications. I improved, yes. But, w/ my meds thrown in the mix, there're gonna be plenty of times I just can't help walking like I've had one too many. Better is better, though.

From there, we made a trip to our new endocrinologist. Blood work, anyone? The tests show that my thyroid levels are off kilter. One more hormone repair! So, I was prescribed synthroid, 1 x/ day, 1st thing in the a.m., 1/2 hr be4 eating anything. Seems to be doing its job.

Then, due to my concern about costs, we began talking about testosterone "implants", which we'll understand better after next Fri.'s appt. I do know each implant lasts 3 mo.'s and costs quite a bit less. as a matter of fact, the doc's info from the ins. co. is we won't be charged. Makes me happy. I constantly worry about how much I cost. W/ testosterone, interferon, bupropion, klonopin, fentanyl, synthroid, syringes, supplements, Dr.'s visits, tests, MRI's, CT scans & gas, not to mention the stress on my bride cuz she has to drive the great majority of the time, ECD is damaging to more than just the bank acct. W/ Humana's RightSource, fewer Dr.'s visits & scans & these new implants, though, we're whittling it down. We might be able to have a mug-o-brew at Frog Level Brewery, which we highly recommend if you're ever in Waynesville. These folks even let us bring supper in while we listen to the music & tip our glass.

Oh, yeah! Last trip to the endodontist went very well. The root canal is healing nicely, and he doesn't need to see me again for a yr. 'Tis a shame. they got some cute ass'ts. It doesn't bother my betrothed that they flirt a bit w/ me. SHE KNOWS WHO I"M GOIN" HOME W/? The best lookin' gal in the joint. ;-)

Ya'll take care & God bless all.

 

Physical Therapy

Started PT Monday, close to the house. It's about 2.5 miles. That's close enough for me to drive. After 3 days, the therapist is very pleased w/ my progress. It is fairly intense. One important detail, I need to remember to continue the exercises at home. :-) 

ENT

WHOA!! They sure weren't kidding about "Unpleasant". It took me two days to get my brain back in the middle of my skull! Warm & cool air in my ears, flashing lights up, down & sideways. They sure know how to screw a guy up.
Now, my legs screwed up, w/ no obvious reason. Dental work coming up. A neurologist in the mix. An oncologist, endocrinologist and family doc visit. Sheesh! I don't wanna be rich. But, it sure wouldn't hurt.
My wife said we have nothing in savings. Gee! I wonder whose lap that falls into, not that she's pointing fingers. I'm good enough at that. We could pay for a heart & lung transplant w/ what I cost. This SUX!!

Balance Issues

I, at last, have an appt. w/ the ENT to investigate the balance problems I've been having. The appt. is in Feb.. The issues have continued to worsen. I've fallen several times this week, & I'm getting sick of it. I've heard the test for inner ear problems isn't very pleasant, though! I'm up for it & ready to take it on. Mess'n' wit da wrong dude, it is. ;-)

Fentanyl, ups & downs

Well, it's official. I figured, for my own safety, I should talk to my oncologist about increasing my Fentanyl back up to 25 mcg's. I just can't deal w/ the light-headedness & poor balance anymore, and my legs have begun to ache 16 to 24 hrs before it's time to change the present patch. DRAT!! I hate feeling like I'm giving in.

Neurologist

SOME NERVE!!

Had a visit w/ the neurologist last wk. After viewing my latest images, he said my hydrocephalus has not progressed, and a shunt would cause a shrinkage of my brain away from my skull. That could cause a subdural hematoma. I'm pretty sure I still have work to do. So, I'd prefer to hang around.

Thyroid Ultrasound, Ophthalmologist

Had the privilege of having an ultrasound for my thyroid this p.m.. A scan at the NIH picked up some nodules that equip. here hadn't been able to find. I'll hear about the results from that in a couple of days to a few wks.
My ophthalmologist gave me a great report and said the backs of my eyes have actually improved. I like good news. :-) 

NIH, Erdheim-Chester Disease

Got back from NIH, to Columbia to pick up our pooch & fix Mom & my wife a salmon supper, on the 22nd. They were absolutely right. I was completely exhausted. I underwent a heart sonogram & CT scan, a PET scan, Full-Body Bone scan, long bone X-ray, an MRI of my head w/ attention paid to my cerebellum (balance issues can originate there) a spinal X-ray, a pulmonary organ test (A fast paced walk & exhaling/ inhaling w/ a tube in my mouth for measuring volume), a nerve conduction test, consulted Palliative Care and Physical Therapy (for my balance issues), had more than 40 vials of blood taken, had a 24 hr urine study, had a bronchoscopy done, etc., etc.. I'm sure I've forgotten a couple.
It was very taxing. But, it was very interesting, too. The staff was wonderful.
What they found was amazing.I also have ECD in one arm,  the exterior of both lower lungs, the exterior of my right atrium, possibly in my hips (could be bursitis, too), I have Asymptomatic Spina bifida & Diabetes insipidus (my body doesn't use liquids as well as it should) & I pee a bunch in 24 hrs.. W/  the Diabetes insipidus, I don't have enough of the hormone, ADH?, that lets my kidneys know to hydrate my body a little better. This can make me thirsty and fatigued.
I do know a good deal more about myself than I did going in. That's both scary & comforting. But, I'm glad I participated & look forward to returning in a yr or so.

NIH, Erdheim-Chester Disease

I spent another hour or so on the phone w/ the NIH yesterday being given directions, instructions, short cuts, etc.. This must be a very big facility. I can hardly wait to get there, experience it and meet all these great people. We leave 4 Columbia tomorrow, & fly out Sunday. Keep us in ur prayers.

NIH study

It's absolutely official. I spent ovr an hr on the phone w/ the NIH Tues. We talked about the flight, hotel, transportation, and the fact that I'll be experiencing 31 tests in 4 days. That's ok. I'm still excited.

Sight for Sore Eyes

Good news w/out a definite reason. Over the last month or so, my vision's improved. I did need reading glasses to read the newspaper or books, etc., period. Now, in decent light, I've been reading the paper, doing the crossword, reading books, etc. w/out glasses. Yet, my MRI shows the disease is stable. Seems like the growth would've eased up on  my optic nerves for this to occur. I'm not arguing! But, I am curious.

DONATIONS & GIFT MATCHING

Dear Friend:
This is a wonderful time of year with Thanksgiving and the holiday season just around the corner. The ECD Global Alliance volunteer Board of Directors joins me in saying “Thank You” for your generous contributions and support. Your gifts are making a difference:
 Patient representatives come from 16 countries. We represent the largest group of ECD patients known to exist and allow patients and family members to connect with each other to share their experiences.
 The National Institutes of Health (NIH) has begun a natural history study on Erdheim-Chester Disease to understand the disease and its cause.
 The ECD Global Alliance web site provides information to help physicians, patients and families, including links to descriptions of all known ECD research underway.
 A $50,000 ECD research grant has been funded by the organization to better define the pro-inflammatory microenvironment inside ECD lesions.
 A new $50,000 ECD research grant will be funded in 2012.
 In 2012, research, advocacy and education are the priorities and your contribution and support will make a difference.
This holiday season please make a gift contribution to ECD Global Alliance and consider asking your family and friends to make similar gift contributions. You can make your tax-deductible donation online at www.razoo.com/story/ECD-Global-Alliance or mail your check to:
ECD Global Alliance P.O. Box 775 DeRidder Louisiana 70634
YOUR GIFT WILL BE MATCHED! Thanks to a generous private donation, contributions up to $50,000 will be matched until January 1, 2012. If you donate $50, the Global Alliance will receive $100 thanks to your donation and the matching donation. Please share this giving opportunity with your family & friends. It is a great holiday gift.
Supporting research is crucial to our mission. Your gift funds additional research projects and provides for the ECD Global Alliance to act as the communication conduit between researchers, patients and their families. Thank you for your generous gift.

NIH ECD Study

It is official. I've been accepted into the NIH study, and we'll fly out 1/15/12. The poking & prodding will begin Monday morning. I'll be getting bone scans, PET scans, CT scans, blood work, a stress test and even see a physical therapist for advice about exercises to improve my balance. That's just a taste of where they're going to take a peak. We're really excited and plan to also make a mini-moon out of a couple of the days. The Dr. has warned me that come Fri., I will be very tired. I'll get over it for time w/ my bride, though.

Love and Support, Very Important.

My wife juggled some things and figured out a way to get tickets to the Third Day concert this last w/e. It was one heck of a show. We were able to get our minds off of Dr.'s visits, MRI's, Interferon, Fentanyl, Life expectancy, etc. and relax together and enjoy some great music, sang ourselves horse, and joyously praised God. She even got CD's and a sexy T-shirt (for her) figured into the budget. We hadn't been together like that for a while, and it was absolutely great. I love my wife w/ a passion! I am a very blessed man. She knew I wanted to see this show badly. She loves me. She did what it took. I lead a very blessed life.
Thank You, Lord.

No News Is Good News, I Guess.

Well, it's been almost a week, and I haven't heard anything from the oncologist. So, I reckon I'm in the clear. I'd like to know what's up w/ my arm, though. It'd be nice to find a pain killer that works, too.

MRI nap time

I've had an unexplained pain for about the last month or so. It started under my scapula feeling like a muscle strain. So, I tried a heating pad, Aspercreme, Ibuprofen, warm showers, etc.. Nothing has helped.
So, I called my oncologist Thursday for a prescrip refill and posed a question about the pain. Well, guess who's going in for an MRI of his shoulder and upper arm. It's possible the disease has become active and begun spreading down my arm. Boy! One thing after another.
But, at least we're going to see Third Day at Biltmore toward the end of this month. They sing one of the songs, "Mountain of God", that reminds me of the day I was diagnosed, and we sat in the exam room holding each other and crying. "We must go thru the valley to stand upon the mountain of God". His strength thru our weakness.
Which reminds me. I've been writing like crazy lately. I think He's feeding me some pretty good stuff, too. Claim Me, Let Me Shine, Better Man, Thanks, You Spoke are some of the titles. I even have melodies for a couple. I sure miss those callouses. I have to build them up all over, again. I'll be working on both the callouses and the tunes.

A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Finally got this published to inform the public a bit. A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Finally got this published to inform the public a bit. A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Life?!!

Don't worry. I'm not gonna go and do anything stupid or selfish. But, the road's end is beginning to look better all the time. I'm sick of feeling like a problem. I didn't ask for this damn disease, the meds or the side effects. But, it's looking like my trying to be responsible, honest and not risk a child's life is going to come close to ending our marriage, if not outright end it. If I'd croak it would solve many problems that exist in our life. If it wouldn't put me on the outs w/ God, whom I deeply love & do NOT want to disappoint, I could just stop Interferon and Testim. It wouldn't be any fun. The disease, however, would just do its job and get rid of one mouth to feed. I'm still here, though. So, God must still have work for me. That's ok. HE knows best.:-)
Yes. I still smile, enjoy warm, sunny days and time w/ my bud, "Curry".