Saturday, November 27, 2010

Possible Transportation

Less than a wk. after My Ophthalmologist's advice not to drive if there's any question about my vision, I found an agency that offers transportation to folks on Medicare. There's a $2 charge for in-town trips. But, the great thing is they'll take me to Asheville for a $12 round trip fee. That's a load off of my mind. At present, my wife either has to take me to the docs and rush to prep. for work after or, she has to get up on her day off and drive when she might not feel like it. That's happened enough that I've really begun to feel like a burden.
Don't know if my wife will go for the $12. Depends on how precious her day off and "me" time is.
Funny thing is, I once worked for this agency.

Thursday, November 18, 2010

Day of the Oncologist

Wed. was my day for an Oncologist visit. He had no idea what might have caused my stirring sensation a couple of weeks ago. He did say he wanted to continue with the MRI and CAT scans every 6 months to keep tabs on me. The latest MRI showed that I remain stable. Good word, Stable. :-)

Thursday, November 4, 2010

Eye Guy

Had an appt. with my Ophthalmologist Monday. Man, I hate having my eyes dialated! I was a little tired, which affects my vision more, now. So, I think I was a little off my usual impressiveness :-). It was the way he said "You're in the normal range". But, he was not alarmed. In 6 mo.'s I get to enjoy dialation, again. They're also going to check my optic nerve then. This is so much fun.
The news was good enough that my wife and I went to TGI Fridays for a nice lunch. Had the Santa Fe salad w/out Ranch dressing. Had the balsam Vinegarette instead. Was quite tasty!

Sunday, October 24, 2010

Insurance and MRI

My MRI results apparently show some thickening of tissue in my "Cavernous Sinuses", under and behind the brain I think. I'll find out exactly what that means Nov. 17, my next Oncologist's appt..
Since my Drug coverage is being cancelled, per CIGNA, we had to talk to my agent about new ins.. Well, wonderfully, I've found that, to be covered, we not only have to pay the standard charge for Medicare coverage, which does basically nothing, we now have to pay $154 for supplemental health and another $34 for drug coverage. Both monthly.
With our outgo and this new extra cost, I just don't get how we're supposed to get by. I'm looking for some work I can do on my meds. But, that's difficult w/ the side effects considered, and I cost a good deal of bucks and worry for my bride.
I'm beginning to have thoughts that she'd, in time, be better off w/out me. She could find someone w/out this stupid disease, who worked, added an income to the home and didn't cost a fortune in meds and dr.'s appt.'s to "maintain".
No. I'm not going to do anything stupid. My poor gal has been thru hell due to my presence in her life. Just seems like my absence would become a relief. Then again, there's nothing like loving her or being loved. Think I'll stick around. :-)

Thursday, October 7, 2010

Me and My Big Mouth

Well, thanks to my big mouth ( I called my doc just in case Tues. was a warning sign), I'm back for an MRI Tues.. Man, I'm getting tired of being the money siphon in our household. Sometimes I honestly wonder if my wife wouldn't be better off if I took the ascending elevator home. But, that's silly. I'd want to take care of her if she were sick, and I wouldn't love her any less. I'd be lost if she was taken from me, too.

Wednesday, October 6, 2010

Blue "Tuesday"?

I had a very strange day yesterday, Tuesday. I awoke w/ the feeling that someone had their finger in my head stirring my brains rather vigorously. I'd had an injection that morning. But, Interferon rarely bothers me any more, thank goodness. I had changed my Fentanyl patch around 12:30 am on Monday. That's more than enough time to adjust to that, though. I spent the day off balance, w/ shaky vision, tired, forgetful and w/ that stirring feeling in my head.
Adding to that, at about 8:45 pm, I glanced at the clock and realized our Small Group would be letting out in 15 minutes. I forgot group!! Dang it! Probably best, though. Feeling like I did and having shaky vision at best, it probably wouldn't have been very responsible to get behind the wheel and maneuver those winding, dark, country, mountain roads. It'd be a nasty surprise for my wife if I came home dead or in cuffs (I'm sure Fentanyl in my blood would constitute DWI). Thankfully, today is a different day, and I'm feeling a bit better :-).

Sunday, September 5, 2010

Ministry and/or Small Group

I talked to our Pastor about using my experience w/ ECD as a ministry and/or Small Group to encourage others who've gotten, or may in the future get a frightening diagnosis. He liked the idea.
Right now, he sees it as a ministry for the ill. Well, I sure don't want a congregation member to get sick. I'm looking for Christian books on the subject. I think a Small Group will equip folks (victim and caregiver) to deal w/ the unexpected experiences; ie, cancer, Parkinson's, Alzheimer's, in life.
I seek to help them see that God is not inflicting them, that denying sickness a grip on their life can actually help lengthen it and that there is still life to enjoy. I want to help them see that there are others, loved ones, who are going through this difficult time, as well. These folks deserve to see a fight, not to watch this person they love just give up and leave them behind.

Saturday, August 21, 2010

Herbs and Supplements Do Help. Not sure about Hemp. Tee-hee.

I take a number of herbs and supplements for several reasons. This, though, is not my advice for others. I'm not a doctor and can't give such advice (Better safe than sorry).
Fish Oil, 1000 mg 2x/day- Good for the heart and I heard somewhere it helps protect the brain. Since one growth is around my pituitary, down around my carotids and back up into my orbits, I figure it can't hurt to take precautions. More info at http://www.realage.com/tips/choose-this-protein-for-more-mental-power?eid=8275 .
Ester-C, 1000 mg 1x/day- Boosts the immune system. Seems to help w/ drug side effects. Since Interferon causes Flu-like symptoms, kinda makes sense.
A good Multi-Vitamin, just to help w/ what the body might not get w/ my ever changing diet.
Saw Palmetto, 320 mg 2x/day-Since I use a Testosterone replacement gel, which enlarges the prostate, I use this for urinary and prostate health. It was advised by my doctor.
Folic Acid, 400 mcg 1x/day-Helps w/ energy level and cell production, such as in the stomach. W/ my meds and side effects taken into consideration, helping maintain the stomach's health seems a good idea. I eat lots of fruits, veggies and salmon. I want to make sure my body gains full benefit from these.
Magnesium, 250 mg 1x/day-Stronger, addictive pain killers can cause the water levels in the intestines to decrease, causing constipation. Magnesium helps the intestines to remain hydrated.
Vitamin D w/ D-3, 1000 I.U. 1x/day-Since D is vital for proper calcium absorption, and I have heavy xanthum involvement in my lower fibias and tibias, I figure doing all I can for my bone health is a good thing. Plus, it helps w/ any inflammation I may experience, thus, less pain.
Calcium w/ Magnesium & Zinc, Cal.-600+mg, Magn.-250+ mg, Zinc-10-15 mg in 2-3 tablets/day-My Endocrinologist found my Calcium levels to be low and recommended a supplement. The extra Magnesium, I figured, couldn't hurt, since I'm on Fentanyl.
Since Zinc's involved in eye health, and I have growth in both orbits, I take this as a kind of insurance policy for my vision.
Silicea terra, 6 pellets 1x/day-I've noticed an unusual body odor this Summer. This Cell Salt, recommended by a health food store, seems to have remedied this problem.
I, also, try to drink six or more ounces of hot organic green tea on my scheduled Interferon injection days. This seems to have helped w/ the remaining side effects since my body grew accustomed to the drug.

*This regimen works for me. Before anyone else begins such a routine, their doctors should be consulted and their advice followed.*

Tuesday, August 3, 2010

Z's becoming a too familiar letter!!

Several times in the past few wks, my wife's actually checked on me to make sure I was still breathing. We normally hit the hay betw. 1 & 2 AM. So, I normally awake betw. 9 & 10.
Well, these times I'm talking of, I've slept 'til nearly noon or beyond. That's when my bride wakes me to make sure I'm ok. So, w/out her concern, who knows how long I'd have been doin' Z's.
I'm assuming it's the Fentanyl. But, why so erratic?
Not to mention, I'm missing "Rachael Ray"! ;-)

Sunday, August 1, 2010

Good News in the Mailbox

Received a very nice surprise in the mail Saturday. It was a reply from Johnson & Johnson about my application for assistance w/ Leustatin (Cladribine). I do qualify!!! Yay!!
It came w/ a form my Oncologist needs to fill out, though. Why not send it to him and save a step?! Ah, well. I got an SASE ready and mailed the package of to him.
...And the journey takes another step.

Friday, July 30, 2010

Med Sleep

Geez!! The meds I'm on sure make me sensitive to zzz's. If I don't sleep for at least 8.5 hrs, 9-10's more like it, I just have the hardest time functioning, organizing my thoughts, etc..
Our dog was startled by a falling object last night. He's a Yorkie. So, he's a tad high strung anyway. For a 1/2-1 hr he continued to sporadically bark at, what turned out to be, a curtain rod.
I appreciate his alertness to the unusual. But, I'm an absolute zombie this AM. Thankfully, other than Testosterone gel, no meds today.

Monday, July 26, 2010

New Study

Learned of a possible new ECD study. They'll be looking more at the history and progression of the disease in order to discover better treatments and a possible cure.
It's being carried out by the National Health Institute in Bethesda, MD, and travel, food and lodging will be paid by the NHI for each US patient. So, guess I'm going to Maryland late this year or early next. :-)

Friday, July 9, 2010

Road to a Bigger Prostate :-)

Well, it seems my testosterone levels are low, and my Endocrinologist wants me to move up to 5 tubes of hormone replacement gel a week. Fine by me w/ one exception, the worst side effect w/ this stuff is an enlarged prostate.
Well, at least Saw Palmetto really does work for that. I'll just be taking a little more than the reccomended daily allowance.

Thursday, July 8, 2010

Endocrinologists Point of View

Had the priveledge of visiting my Endocrinologist Tuesday. He was very pleased w/ the reports he's been getting from my Oncologist. He was also very pleased w/ my current condition. Supportive he is of my interest in Cladribine ( little break in the "He was" theme :-) ). There was talk of increasing the hormone gel one more tube a week. But, that's, of course, depending on the results of my labs.
It really tickles me how I've, pretty much, done nothing but improve since that day, almost 3 yrs ago, God had a long talk w/ me. I put things in His hands that day, and the rest is recorded right here in cyber space. :-)

Friday, July 2, 2010

Lapse in Memory

As I wrote in my other blog, "What's Their Problem", I'm confronted w/ a new "problem". I've received the forms to complete for assistance from Johnson & Johnson where the Cladribine (Leustatin) is concerned. This both frightens & excites me.
It frightens me because the drug comes w/ a warning for the patient not to be exposed to anyone w/ a contagious illness, because the infusion lowers the blood count. Thus, the immune system is pretty severely compromised.
So, I could die due to a side effect of the med. Hard to be an influential father as ashes in a jar. But, what kind of Dad will I be w/ my head not screwed on straight and my balance not so good, thanks to some of the meds I'm on now. I've been really torn about this.
Well, it's funny how God reminds me in His Word what I'm missing. I was reading Billy Graham's book, "The Journey", this morning and, what should come up the AM after my "Doubt and Fear" entry but, "Conquering Our Fears". Within four sentences, I had my fear eased. Dr. Graham wrote, "The opposite of fear is trust-trust in God and His unchanging love". There is also Psalm 118:6, "The Lord is with me; I will not be afraid".
Once again, I was worried, afraid and in tears w/out talking to the One Who knows me best and knows what's best for me.
I'll finish the application process, and the rest is in His Hands.

Monday, June 28, 2010

Progress?!

Heath Shulers' office called again today. ,She needs a bit more info before she can put pressure on the insurance co. to cover Cladribine (Leustatin). One thing she needs is the manufacturer. Peace-o-cake, right? Wrong!! I keyed in "Cladribine Manufacturer", "Pharmaceutical maker of Cladribine", "Maker of Cladribine", even "I need to know what pharmaceutical company manufactures Cladribine", among other queries. But, each led me in the same circle of side effects, chemical structure, side effects. My scream of frustration could be heard by canine ears only.
I finally, after hours, tried a web address below the site link. Voila! There was all I needed at the Selleckchem site. This after I called my doc's assistant, gave her the name, number and info needed at Rep. Shuler's office.
Well, we at least got a connection established betw. our Rep.'s office and my Oncologist's. :-)
And, "progress" didn't beat me. This computer just doesn't realize how determined I can be. Go ahead! Mess with me! >:-/

Thursday, June 24, 2010

Image Results

Got the report back on my images. Doc says the disease seems stable, if not improved. They did find some Sclerotic growth on my spine. Apparently that's just a sign of age. Only problem is, I ain't old. I'm still 27, right?
Got my paper work, all my reports, from my doc. They go way back to around 2002 or so. I'd forgotten a bunch of that stuff. They are, however, all packaged and on their way to his office. Only problem I see is, since my image report is so good, they may see no need for Cladribine.
Ah!! Whatever. God knows what He's doing. :-)

Saturday, June 19, 2010

Rising Blood Pressure

Went in for the MRI & CT scan Thursday. Was there at about 1:50 PM and went back to financial rather quickly. That's where they told me my co-pay would be about $78 more than I had been quoted earlier that morning. Apparently they had not taken the CT into acct.
Then I was called back to the Radiology waiting area. Well, they had a battle w/ Medicare. They said the CT scans wouldn't help me. Now, that's a ridiculous statement. CT scans are a diagnostic tool, not a treatment.
It took about another hour. But, I was finally taken to the MRI machine at 3:30. I had a 2:30 appt. That's the lengthiest period of time I've ever been in that imager. I was in there for 45 minutes to an hour.
Then they hauled me out for the CT scan. But, I had to drink more Barium first, because the process so far had taken too long. I did get into the CT room quickly, though. Got the fun, lung burning, bladder warming dye. Then Got in the machine and that was done pretty quickly.
After fasting since 11 PM the night before, I climbed into my truck at 5:30 PM. A 3 1/2 hr visit w/ an 18 1/2 hr fast thrown in.
I did feel I had earned a treat after all this. So, I hauled it to Hardees to try their new Chicken Tenders. Boy! Those things were good. :-)
It felt really good to walk through the door when I got home!

Wednesday, June 16, 2010

Relieving News

Got a wonderful phone call from my Oncologists office yesterday. Seems I qualify for assistance w/ my Interferon. After I use the six month supply on hand, I won't have to pay for that any More. That's pretty close to $300 back in the old bank acct. :-)

Tuesday, June 15, 2010

Busy Day

Well, I'm set to have an MRI and CT scan Friday. My paperwork for my State Rep. is on the way. My wife and I head to Johnson City for the embryos Monday, scheduled for 11:30. All this, and I had to go back out and pick up my barium milkshakes. Topped off a day started at my wife's doc, and I don't know how many phone calls. STILL didn't get everything done. AAAAAAAAAEEEEEEYYYYYY!!!!

Monday, June 14, 2010

Images anew

Well, got the news that I am to have an MRI of the brain done Wednesday, 6/17 and a CT scan of the upper torso 6/18. Only one problem. I have to reschedule the one on the 18th. I didn't catch that I have a physical at 8:30 AM. The CT scan is set for 9:00. I think I'm about to tick a Physician's assistant off.

Saturday, June 12, 2010

Worries vs Determination, Hmmmm

Well, I learned today that if I begin Cladribine treatments, I have to stop Interferon for a period. That worries me, because if the Cladribine doesn't work and the growths start again, can we get them stopped a second time? I wonder, too, how my body will react returning to Interferon after having a low blood count. It was difficult to adjust to with a healthy body.
I'm still willing and determined. But, wrestling with these new frets is troublesome.
I, also, have a new "experience". For about 5 months now, I've been having arm pain in my Humeri(?), Humeruses(?), bicep area of both arms any way.:-/ I like to do push-ups during my walks, and it became difficult when, suddenly, this pain started. I did nothing to cause an injury. There are spots in each shoulder which show up on a bone scan I had done in 2007. I wonder if the growth there hasn't progressed. I figured it would be rather stupid to take the chance. So, my doc is scheduling a full body bone scan and MRI of what brain I've got left ;-). We shall see what we shall see! I just need to focus on the fact that God knows what's best because He can see the BIG picture. I trust He knows exactly what He's doing, and I don't argue (He's bigger and stronger than me) :-).

Thursday, June 10, 2010

Cladribine: Insurance Co.'s! Geez!!

Well, the first news on the Cladribine is that, because it is an experimental drug, it isn't covered. Since less than 350 people have been diagnosed with ECD in 80 yr.'s, any drug they use to treat it is "experimental".
So, I've contacted a local paper and NC's state Rep. The paper had me write an editorial for starters, and Heath Shuler has called me and sent an authorization form for info about me from other agencies. I just need to determine what documents I have that might be useful in helping his office understand my case. I think I've got some pretty good ideas.

Thursday, May 27, 2010

Cladribine: Chpt. II

Got a nice list of sites from Drugs.com and some great ideas brainstorming w/ a friend of mine. Time to get to work.

Saturday, May 22, 2010

Cladribine: The Battle Begins.

My Oncologist said I'm doing great and was very pleased to hear that my vision has remained good, if not improved.
We discussed Cladribine, and he agrees with me that we should try it. He does believe we're going to have trouble convincing the insurance co. to cover it. The drug isn't exactly available at the discount store. It must be infused at a hospital, and one last draw back, I have to sign a release. It lowers the blood count. So, I could die of an infection. Yeehaw!!!
We did put in for it through their computer. They said it shouldn't take very long for a reply.
I've already begun looking for assistance from the pharmaceutical co.'s.
I have confidence all will be fine :-).

Wednesday, May 19, 2010

A Little More Info. and......

Well, they didn't tell me that the price they quoted was for a 6 month supply! We found out when I received my shipment yesterday. It's $1700 regardless. But, we feel....better. Hope the rise in Blood Pressures didn't do any permanent damage :-).

Monday, May 17, 2010

My taxes paid for me to Pay THIS


We found out from Cigna today that my Interferon is ready to be shipped out. Our Co-Pay for having a disease I didn't exactly beg for? $1076.13!!! FOR ONE STINKIN' MONTH!!!!!!
How do the insurance exec's live with themselves? And, how is this legal? Oh! The right lobbyist, the right politician, the right price. I forgot.

Hmm. I thought that all along

I read an article in the local paper this morning about a study showing a link between Attention Deficit Disorders and pesticides used on fruits and vegetables. Ya know, I've been saying for a long time now that consuming foods that have pesticides, parasiticides, nematocides, not to mention artificial growth hormones, etc on/in them can't be good for humans. I mean, getting something in our bodies that kills living organisms? What are we? Duh! And, does the growth hormone know to rule us out
I do realize these products, by the time they reach us, are in small amt.'s. But, if we start putting these things in our bodies when we're children, and they don't all get eliminated from our bodies from the start, what happens when they add up in 30+ yrs.? Cancer? Downs Syndrome? Erdheim-Chester Disease (had to throw that in)? These things are not among those God intended for us to consume, and there's been a rise in the disease rate over the yrs. Hmm!
Yes. I realize that there are six billion plus people on this planet to feed. I also know that farmers are really painted into a corner trying to produce enough for the population, and that problem is compounded when pests, diseases, fungi, etc. are thrown in to the mix, not to mention waiting a couple or more yrs. for animals to grow to maturity.
I'm not saying I've got the answers. I have noticed how much healthier I am since I began eating as much "organic" as we can afford, though.
It's a huge, difficult problem. But, there's got to be a better way.
By the by, if you want to put me to the test, eat an organic egg and compare it to a regular egg. Try organic milk, then regular milk. My wife and I have noticed that organic milk can be kept and consumed quite a ways beyond its expiration date. Try that w/ regular milk.

Friday, May 14, 2010

Judgement on Cladribine

Well, I'll hear the verdict on Cladribine Thursday. Got an appt. w/ my Oncologist. Provided the possibilities are good, I just hope the insurance co. >:-( doesn't get in the way.
AND, since we don't need healthcare reform (ya know, it bein' Socialist and all), I wonder what a life is worth to a lobbyist and how much that would change if it were their life. It blows my mind how a persons conscience can allow them to choose such an occupation!

Sunday, May 9, 2010

Headaches

Hope it's not a problem. But, I've had headaches for the last seven days. Not bad. Just irritating and right over my eyes to the middle of the top of my forehead. It's probably just the pollen. It would be stupid, though, to leave them out of my next update w/ my doc, huh?
Took my bride to "The Chef's Table" for brunch after church for Mother's Day. She had the "Low Country Benedict" w/ shrimp and a grit cake. I've had it before. Mmm-mmm!! I had the Bacon, Cheddar and Tomato Quiche w/ Quesadilla soup. We left very satisfied as usual.
Oh! And Curry gave her a cute Mother's day card :-).

Tuesday, May 4, 2010

MARS?!!!!

I don't know where this one should go. But, I have to say something.
Scientists are looking into Terra Forming Mars! We've worked really hard at being irresponsible with this planet and have done a good job. People treat Earth like it's disposable. When this planet is used up, we just go to K-mart and buy another one, Right? That shows how thoughtless humans are where the population in general is taken into consideration. But, the REALLY bad personality trait? Many of the occupants of this planet don't even care about the tremendous mess that's being left for their children. Many people won't recycle. They throw trash from their auto windows, drive Hummers and the like in spite of the economy, the price of gas and the worsening environment.
And we deserve the responsibility of civilizing another planet whose health we can ignore? Geez! We're even busy trashing up space with spent satellites, left over lunar landing parts, etc.
I think the human race has earned the right to sit right here on this rock until it can be straightened out and cleaned up. If we can't accomplish that, then, barring God's intervention, we deserve to flicker and fade out with this orb. We painted ourselves into this corner. Why should we be able to simply do the same to another world?

Sunday, May 2, 2010

A Little Sweat'll Do Wonders

Saturday, I decided it was time to get the yard ready for the improvements we want to make. So, I spread organic fertilizer, bone meal, blood meal and potting soil over our garden. I then borrowed my neighbors big tiller and went to work. I tilled the garden 1st, then the hill behind our house that I have plans for.
The party continued as I planted corn, beans, zucchini squash and a couple of 'maters.
Got some Hostas my neighbor gave me in the ground, too.
I'm tired and sore here on the following day. There's something about hard work and accomplishing a job, though.
Told ya this disease wasn't gonna beat me!

Tuesday, April 20, 2010

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.

Saturday, April 17, 2010

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!

Wednesday, April 14, 2010

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!!

Monday, April 12, 2010

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 :-).

Friday, April 9, 2010

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!

Monday, April 5, 2010

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.

Saturday, April 3, 2010

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.

Thursday, April 1, 2010

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.

Tuesday, March 30, 2010

This @#&%$*! Day

What a day! I slept well last night and felt pretty good 'til about 3:00 today. I fell asleep w/out even realizing I had blinked. When I woke up, it's like someone filled my legs and body full of lead. It was only about a 1/2 hour nap. I wonder if exercise doesn't, at times, cause me to absorb the Fentanyl faster. 'Cause I have been exercising more and more vigorously. So, it's a thought.

Monday, March 29, 2010

11 Years!

My wife and I celebrated our 11th anniversary Saturday. I got her a massage, and she got me some acupuncture.
We had Rizzoto crab balls as an appetizer. The restaurant treated us to a glass of champagne. Then, she had Red Snapper w/ asparagus & potatos. I had Lobster Ravioli w/ asparagus. We enjoyed a half bottle of Zinfandel, and then, we had a chocolate lava cake w/ some lovely decaf for dessert. Wonderful day!!
Oh! And, yes, there was a nice bouquet of flowers waiting for her when we reached our table.
Love that woman!

Couldn't Women do a Better Job?

This is entered realizing full well that there are stand-up, courageous men on this soil.
With a war going on, the brats in Washington fighting like six year olds trying to make sure hard working Americans have little if any health care and our reps slowly giving our country away to anyone who promises to suck the life out of the U.S., I've been thinking. Women are smart, strong and cunning enough to play politics (in a good way). They should be running this country. With a certain wolf-killing republican taken into consideration, I think women would make better decisions, wouldn't let tremendous egos get in the way and wouldn't decide the best way to settle things is to hire innocent citizens to kill other innocent citizens. For Pete's sake, show some guts and fight your own fight.
By the way, why are so many people blaming Obama for an avalanche that piled up behind baby bush? Our current president inherited the mess that exists, and it's going to take him more than 15 minutes to clean it up and complete his other responsibilities.

Friday, March 5, 2010

Exercise

Boy! There's a good deal to be said for exercise and illness. I was absolutely dragging earlier today. But, I refused to let it keep me down. I took our little buddy for a walk, did some push-ups, spent a few minutes on the ellipse and did a few other activities. I feel much better. Need to do that more often. :-)