Whole Lot of Shakin'

One of the things I've changed the last few weeks is that I've begun using an electric shaver. Lately I have been getting more cuts from my razor than I'd like to admit so after my honeymoon I bought myself a Norelco 1250  SensoTouch. I wanted a nice one because I hate electric shavers. My facial hair is dark and straight so I need to shave with the electric a couple times a day.

My wife took her "Trigger shot"  last night. If all continues well she'll have her eggs removed Saturday. If any of the fertilized embryos are Down Syndrome and Huntington's Disease free two will be transferred into Jane early next week.

John Lennon-"Here We Go Again"

I had my blood drawn for my CAG Repeats again. It turns out that when a number shows up as high as mine it should be checked with a Southern Blot. My CAG can be much lower with some other proteins before an additional set of repeats (I think I got that right). Only the closet set will affect my HD. This would explain my high CAG number in the original test. It makes me anxious to think about the waiting game but I'm happy to find out my true count.

Swing Out Sister-"Waiting Game"

I never do good with waiting and this isn't anything new. Last time I wasn't so worried about the test as being anxious to travel out of town. I hadn't known I could do it through my private doctor. This time my psychiatrist ordered it, so I'll be getting the information from someone I really trust with my mental health. He told me this morning that he wouldn't have felt comfortable ordering the first test as he's not as knowledgeable about Huntington's Disease but he has no problem with a repeat test as I've educated him on it through my own struggles with the last test result. 

Alphaville-"Forever Young (extended)"

and another song, same title

Rod Stewart-"Forever Young"

The following is an advert by some supporters of Ron Paul. Paul is a candidate for President and is a member of the Republican Party. Please note he did not approve this advert. It was made by supporters who have not received his endorsement.

It is one of the most racist ads I've ever seen, and is very funny in a sick way. It reminds me of Christine O'Donnel 's ad that featured her saying "I am not a witch...I'm you."   Uhh, no you're not. I don't feel a need to go on telly denying I'm a pagan. 

"Chinese Jon" Huntsman ad

Back to my blood draw-I'm so upset over it now I'm shaking. My fingers are bouncing off my keys and hitting the wrong ones. I hate when that happens. Sometimes when I get extremely upset my muscles tighten up. That increases my shaking. I wish so strongly I had these results now. I'm really scared about this but I can't put my finger on exactly what I'm scared of. I do know I'm concerned because I hear the little OCD voice capitalizing on my thoughts.

Jerry Lee Lewis-"Whole Lot of Shakin' Going On"

It doesn't help that I'm coming down with a cold. My throat is sore as hell, and my nose is starting to run. Its making me moody as hell. Being sick usually brings out the worst in my HD. I wonder if that's why I'm so jumpy and and upset?  I'm going to sign off and go read if I can while I eat some chicken soup. Then its back to Judge Judy.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.

Mind Games

Please forgive for being all around the place. I'm trying to get sleep and rest while I can and then gather enough energy to repeat the cycles. My life's been this was since I came home. I'haven't done much outside of change my clothing and watch the last few days, then its rinse and eat.




I see little elfin tracks on Jane's side of the bed and it makes me feel really good that somehow over the last months I can sleep with her that close to me.Sometimes I'll even wake up with a washed face. It makes me feel, well, appreciative.




This pneumonia really took me out for a month. First part of November through the middle of December. It just would go in hiding for a bit and then come out again.

Al Stewart-"Year of the Cat"

I really don't like that I got this sick and need to prevent it from happening again. That means its time for the nasty swallowing test. I didn't think I'd have to do it until much later on my disease progression but clearly for me this is not going to be the case. I can't put it off because to do so may just kill me and after the last month I've realized that this is not an easy way to go.

John Lennon-"Mind Games"

I was reading HDTrainWreak and I broke down. Stella was reading my blog earlier this month and started a sob fest. Now we're one on one.


In one of her latest blog entries she writes eloquently about her last day  of "not knowing" and all of her feelings. It brought back memories of being tested down at the medical centre earlier this year. If you haven't read the long version, I went  down to get my CAG Repeats. I'd already been diagnosed with HD  several years by then but like a mad scientist I wanted these little numbers that would say so much about my remaining quality of life.
.
There is a point when two much information sends my mind off the rails. For me, having the blood draw before I was symptomatic would have been one of them. I couldn't do. The other was during the process of obtaining my CAG repeats. That day, sitting on the Malibu Beach with my first official positive genetic test in m my hands, I was an  emotional mess. Even though I knew what the paper said and had read it in the office it was a OMG moment when my whole world seemed to change and it was never going to come back to my pre-tested mental state no matter what the result.

Chrissie Hynde-"Angel of the Morning"

with Cheesy Abba Graphics

It fell onto my girlfriend's lap on the beach to try to get the pieces picked up. I can't blame the  testing centre they can only work with what I presented them with and looking back there wasn't much I gave them to work with. My profile screams "closed minded Brit" or as Jane later described one tester "She seemed shocked a self described British librarian aide could step off the paper into her office."

Elton John, Billy Joel - "Piano Man"

Yet that's exactly what I did. From that point onward it was me versus them.I'll be damned if I choose to work with them in their treatment of me. I basically gave them the therapeutic middle finger, There was a period of time when I dreamed that the lab found me so hard to work with that they wished I canceled my upcoming visits. This war got personal, quickly.

Human League-TOTP -1981-"Love Action"

There is only one loser in an initiative like this. 

The Huntington's Disease patient loses

Every single time.

"I believe, I believe what the old man said


Though I know that there’s no lord above

know I believe in love
I believe

I believe in me, I believe in you

And you in truth though I lie a lot

I feel the pain from the push and shove

No matter what you put me through

I’ll still believe in love"

Techno Trance - "Tainted Love"

It is so easy. with diseases of of the mind, to let them them take control of you. This is something we need to be constantly aware of.  I know for myself, it can grab me for days before I realize what is happening.Then I have to have to back up and repeat my actions with the appropriate actions and frame of thought.  This sounds like it takes a lot of energy and it does. That's why its so important that I do it right the first time. 

Sometimes it can be as simple as saying, as I did yesterday to someone, "I don't think today is a good decision making day for me."

As for today, I'm actually feeling well enough to go out briefly to the store and grab some soda. I'm completely out of my drink and want to buy some more. Then I'll bathe if I have the energy and eat before going back to sleep.

I'm working to learn to take care of myself and pace myself yet not to take it too easy. Its a hard road to follow.  It is one that last two weeks have taught me are life and death for me. 

Depeche Mode-"People are People"

I'm climbing briefly out of the trenches here for a trip down memory lane. My one and only man-crush David  Garen. My poor father, if I knew the heart attack I was giving him. 

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

Wassiling

I stayed up to late last night and paid for being up down and around yesterday.

Frankie Goes to Hollywood-"The Power of Love"

If I had my way, I'd want this song being sung when Jane's father walks her down the aisle.

We scratched John Denver's Follow Me off the short list, as we're already getting tired of it.

UCLA MEDlies - "Life in a Northern Town"

Pet Shop Boys - "Opportunities"

I had a chance to talk to my brother yesterday as the wedding date is being finalized. The last week before the wedding is going to find Jane extremely busy and I am looking forward to spending some time with his little ones. They are so adorable. The call also gave me a chance to run the idea about the PGD-IVF by him.

He actually thinks I have potential to be a good father. I told Peter I had fooled him pretty good. 

I told him my concerns, which is basically I don't want Jane to have two kids to raise, the baby and me. Peter said that I need to realize its her decision to make, and I don't have a right to take that decision away from her to satisfy some inner guilt.(although I must say I try to do that!)

Dead or Alive - "Lover Come Back to Me"

Speaking of PGD-IVF, the first visit at the fertility clinic went well. We both are are on the normal side of the fertile scale so that's one less thing to worry about.

John Lennon - "Beautiful Boy"

Another thing Peter and I talked about was this blog. Like Jane, he has always respected my privacy. He asked if I would have a sample entry just so he would see what its like. So I'll be sending this entry to him. 

Today's double feature-Sparks

Sparks-"La Dolce Vita"

simply because  its not a real blog entry of mine if there isn't 

a Sparks song.

Not just any single Sparks song mind you, but

two from their Giorgio Moroder period.

Sparks-"Tryouts for the Human Race"

The Harry Simeone Chorale-"Do You Hear What I Hear"

Remember the copy of this cassette of this we owned when we were tots? 

I still think its the best Christmas Carol album ever released.

Sam Stokes - "Here We Come A-Wassailing (The American Edition)"

Peter, this explains the historical misunderstanding of 'Ameriglish' and why the American's think us English are so idiotic :)


Lyrics:

Here we come a-wassailing
Among the leaves so green.
Here we come a-wandering
So fair to be seen.
Love and joy come to you
And to you your wassail too.
And God bless you and send you
a happy new year.
And God send you a happy new year.

If you're not sure what a wassail is
you're not alone
You wonder why it's been so long
and you have never known.
It's because it's from England
it's not American.
Just like cricket, the Rolling Stones,
and figgy pudding, too.
It's just something that
British people do.

If you visit England,
I have this to say to you.
If you need a restroom,
then you'll have to find a loo.
Yes, it seems quite absurd,
they have many different words,
and they spell things like
favo(u)rite and colo(u)r with a "u"
what a funny European thing to do.

If you're in an English restaurant
and you're feeling kind of sick
because the person next to you
has ordered spotted dick.
There's no need to feel faint
No, it isn't what you think.
It's a pudding with raisins in it
nothing quite so foul.
Well, in England they say "willy" anyhow.

I hope you've learned enough
about English carols from this song.
That "don we now our gay apparel"
doesn't just sound wrong.
It does not insinuate
that the singers are not straight.
It's just more silly British talk
and I mean no offense
but leave speaking English to Americans.
Just leave speaking English to Americans.

Oh, didn't I say something earlier along the lines that this would be a typical blog post...well on the second half of this entry I lied :-D

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

Starting Over

Considering all that's happened lately, I feel absolutely normal.  I've been so busy feeling like a person with HD  that I was beginning to forget what its like to feel like a normal person. With all of these "normal people changes" happening in my life, its making me feel more like the average person on the street.

The Beatler-"Baby You're a Rich Man"

Jane finally signed up on Facebook yesterday. That means I can't walk by her humming "fool on the hill" any longer. Its also why I chose this song. If you've seen The Social Network, you know why. If you haven't seen it, run don't walk, over to your computer and log into your Netflix Account. and put Social Network  at the top of your queue. Its a really good movie.

In all seriousness though, I did post this on her FB wall at noon: *duck*

"The Social Network"

There is a photo circulating around the Occupy movement of Occupy Los Angeles. You know the old saying a picture is worth a thousand words? This one is worth two thousand. 

When I posted this photograph, several people pointed out the similarities between this situation and Kent State (as well as the Isla Vista riots). So I think its as good a reason as any to play this powerful song:

Crosby, Stills, Nash and Young - "Ohio"

Back to the Facebook thing, at first I was really concerned that Jane would be breathing down my neck, but then I reminded myself we are both adults. I asked her if it would be an issue if I blocked my blog posts from her. She asked if I could actually do that. I told her that yes, you can choose who can and can't see any post. Then she said that after the issue a long time ago where I had been upset over the fact she had read my tweets behind my back she would never do anything like that again, and the fact I can actually block her from seeing my Facebook blog posts made her feel better.

The Beatles-"Get Back"

On another note, Sunday night we talked some more about parenthood. 

By this afternoon, I've already gone to see the fertility doctor, as Jane had made appointments for both of us "just in case".  Outside of the threat of the "scary needle" it wasn't bad at all. Now all we have to do is wait to make sure this is what we both want to do. I know this is what I want, but it will be weeks to wait for the procedure. 

We also have the wedding to tend to first (how dare we!) , as well as taking quite a bit of time to make triple sure this is what we both want to do. We both agree that the worst thing is going through the process and then regretting it later. 

Neil Diamond-"Hello Again"

Last night we listened to The HD View online radio show. The subject was obtaining disability and it set both of us talking about the symptoms of Huntington's Disease and what the government looks for when people apply for SSI and SSD. Its sick that you have to suffer from physical symptoms before you are eligible for government assistance. Looking back now, I was very lucky that I was able to get on SSD for my Depression. It would have taken me forever to get on it for HD.

This weekend I began a nasty cough with a rattle so I'm going to lay down and if it doesn't get better by tomorrow I'll hit the Walk-in clinic.

Have a great evening, and eat anything more healthy than the Taco Bell I had for dinner.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

Wedding songs and ...Parenthood?

I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!


My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.

Band Aid-"Do They Know its Christmas"

I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.

David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"

Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.

Van Halen-"Right Now"

I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am,  "Right Now".

The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.

John Denver-"Follow Me"

I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.

Next...

Stevie Nicks & Don Henley-"Leather & Lace" 

Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"

This is the current taker for first place:

Noel Paul Stookey - "The Wedding Song"

Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.

On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children. 

No real problem here. I've had a vasectomy and we both know the chances of having that reversed. 


Did I tell you she had done her homework?


Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative. 


Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure. 


Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father. 

Paul McCartney will be our double feature today.

Paul McCartney-"Put it There"

Last time I played this on my blog it was

 about my Godson, as I thought 

that was the closest I'd ever be to having a child.

Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny,  step closer to becoming a reality. 


I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her  mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd  give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all. 

Paul McCartney-"Maybe I'm Amazed"

John Lennon-"Woman"

To to be a sneak I slipped this in her IPod alarm clock this morning. 

Here are two Christmas songs to lead you out this afternoon. They are as different as can be.

A Cold War favourite
Weird Al-"Christmas at Ground Zero"

Kings College, Cambridge - "We Three Kings"

Hope you have a good Sunday.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

Now that I own the BBC...

Sparks-"Now that I own the BBC"

If your only glimpse into my life is this blog, then you probably aren't aware that this year has been a lost worse compared to most.  I don't know what exactly is going on but I'm begining to think it just might be that right now my life feels a bit empty. I'm not working, I had the HD Genetic test, and of course my unexpected CAG repeats 

I saw my shrink Friday for two hours. I had called him Wednesday to see if he could fit me in this week. He heard my voice and said "my office, now, stat" The funny/odd part of it is that the "emergency" he heard in my voice was actually me trying not to tell him about the engagement until I saw him in the office.

John Lennon-"Woman"

So I get there, pour my cup of tea, open up People Magazine and promptly spill the hot Earl Grey all over my lap. No, I'm not kidding. 

You don't want to know how bad it hurt. Just trust me on this one.

Van Halen-"Jump"

That's Eddie on Keys

After two hours of talk, he upped my my antidepressant, mood stabilizer and Haldol. He's concerned that my mood isn't congruent. Gee, don't know what would give him that idea. He's also seriously concerned over some of the Huntington's Disease affects, specifically mild shaking, OCD, and depression/anxiety. I had forgotten last year the holiday stress was really awful too.

My mood is driving me crazy still. I'm so happy to be engaged but the next minute I feel lonely. What I'm really surprised about is the fact that I'm actually cheerful to have plans to be married. I never ever ever would have seen this in my future. I'm more likely to open a Chinese Fortune Cookie that says "This is iyour unlucky decade."

Last thought for the night: Jane and I spent a lot of time talking. Bringing children came up and I let her know that my mind might be open to the possibility. My only concern is bringing up a child who would grow up without a father and a fifty percent chance of a 150 CAG repeat. Then Jane's rational voice pops in and says "but its still only a 50% chance"

John Lennon-"Starting Over"

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.