This should be fun!

Reading is one of my weapons. I can escape the pain, let the story take me to another place. I’ve used books for that all of my life.

Hello dear reader

I’ve talked a lot about things that Chiari has taken away from me. Today I found something new that I can do whether Chiari likes it or not! I should probably slow down and make some sense here. I’m just really excited.

OK, let me back up here.  I love to write. My life’s goal is to be published before I die. The best thing anyone who wants to write can do is read…anything and everything. This is great for me because I’ve loved to read for as long as I can remember.

More recently, I’ve been reading some different authors. I’ve come across some books that have been total disappointments.  But I’ve also stumbled on some incredible books!  And when that happens…it’s hard to explain. It’s like finding treasure.  It’s surprising and amazing and you don’t want it to end.

Some wonderful surprises include Christopher Moore (A Dirty Job), Helene Wecker (The Golem and the Jinni), John Green & David Leviathan (Will Grayson, Will Grayson), and most recently Carolyn Kepnes (You). I’m sure some of you are (have been) aware of some of them. But I wasn’t and my life has been improved as a result of my discovery of them. By the way, if you don’t know any of these, I’ve just given you your summer reading list.

That’s all good, but still not clearing up what the excitement is about, right? Well, today I made another discovery. I found a site (actually more than one) where they give you books for free. You choose a book to read and then you write an honest review on it. The only requirement is that you have to have a place to put the review. So this isn’t just awesome for me, it’s great for you too. The reviews go right here on this little blog for you to enjoy or debate or whatever you’d like to do.

I started this post by saying that I had found something that Chiari couldn’t take from me. What does any of this have to do with Chiari? Reading is one of my weapons. I can escape the pain, let the story take me to another place. I’ve used books for that all of my life.

I know this isn’t really that big of a deal, but it’s a positive that I can see. It makes me happy. And I’m going to do it!

I have one final thing on this topic. I’d absolutely love to hear about what you’re reading (besides this, of course ;-O). And as always, feel free to tell me how you feel or ask a question.

Until next time….

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Scared

Hello dear reader.

I promised you complete honesty at the beginning of this journey.  You know I try very hard to be positive, to be thankful for everything in my life.  You also know that my health is not great.  Today is not a good day.  As a matter of fact, the last several weeks have been quite rough.  I haven’t written in a few days because I was hoping I would feel better, both physically and mentally, before I wrote again.  Sometimes it’s hard to see the difference between complete honesty and a pity-party.  This is not the latter.  This is me being honest about myself.   That said, I’m going to tell you what happened today that scared the crap out of me.

Let me begin at the beginning…I’ve had problems with kidney stones for a long time.  My kidneys, as well as the tubes between the kidneys and the bladder, are full of them.  This, along with my lousy immune system makes me more succeptible to kidney infections.  I’ve had the flank pain for almost a month this time, but didn’t go to the doctor until my temperature shot up to 102 a little over a week ago.  When I got to the doctor the fever wasn’t there but she gave me antibiotics anyway.  Of course I got the whole “if you aren’t better in a few days or if it gets worse…” deal.  I took my antibiotics religiously and didn’t miss a dose.  After a week of them, the pain isn’t just in my right flank anymore.  It now goes around and inside my hip bone.  It feels kind of like a vice on my right midside.  My temperature has stayed around 99-100.  So I called the doctor’s office and made an appointment for today.  Okay, there’s the background.

When it got close to time for me to leave I gathered the things that I needed to bring.  I also realized that I had forgotten to take the chicken for tonight out of the freezer, so I did that too.  In order to be sure it would be thawed out in time, I put it into the sink with water.  I left my house with time to spare so I wouldn’t have to stress about being late.  So here I was, driving up the pass with no worries listening to the radio. Just as I got to the summit of the pass I suddenly realized I hadn’t turned off the water in the sink.  I racked my brains.  Surely I didn’t leave it on!  But I couldn’t remember turning it off no matter how hard I tried.  I tried to think who I could call to go turn it off for me.  There are several people I know would do it, but who would Duke let into the house?  I didn’t trust him with anyone, especially without Tim or I there.  So I turned around and headed back to the house to turn off the water.  Traffic was totally stressing me out!  Every minute that passed I could envision the water getting deeper and deeper in the kitchen.  Would it spread onto the hardwood floors?  What kind of damage would that do?  Finally, after what seemed like forever, I got to the house.  I stopped on the side of the road and jumped out of the truck without even turning it off, much less locking it.  I ran as fast as I could to the front door and fought with the lock, got in and ran to the kitchen to see how bad it was….

There was no water running.  Everything was fine.   Of course by then there was no way for me to make it to the doctor in time.  I called and told them I would be a few minutes late, but they said if I was late I wouldn’t be seen.  So I rescheduled for tomorrow.  No big deal, right?  Happy ending, right?  No.  Not even close.

My short-term memory hasn’t worked very well since they removed the back part of my brain (see my post on Chiari Malformation).  I’ve learned to work around it some.  I write things down and set reminders on my phone for appointments and phone calls that need to be made, things like that.  But this split from reality, whatever you want to call it, how do I work around that?  It’s one more thing that scares me to death.  I’m terrified that my conscious brain’s functioning is getting worse.  I’m too young to be senile, aren’t I?

I was 100% certain I left that water running.  How could I be that certain and be wrong?  I don’t know.  Maybe I’m over-reacting, maybe I have reason to be afraid.  Either way, that’s where I am.  That’s how I feel.  Tomorrow will be better.  I’m 100% certain.

Until next time…

Quotes

Good morning dear reader.

I’m having a difficult time finding something that inspires me to write this morning. I looked at several writing prompts, but none of them felt right today. I looked at famous quotes, but no, there really wasn’t much there. Then I got to thinking about quotes. The ones that are in all of the apps I have are from famous people, but do you have to be famous to say inspiring or profound things? No, those are just the ones people write down. I’ve heard the most amazing quotes from the ordinary people around me. Now that is inspiring today! Let me see, what are some of the best ones?

God’s got you.”
That’s a good one. Tim used to tell me that all the time when I felt like I couldn’t stand one more day of the pain and feeling of uselessness the Chiari gave me. It sounds so simple. It reminded me that I didn’t have to carry it all by myself. I could see this huge hand that I was sitting in the palm of. That hand carried and protected me. I could let go of the weight and let the hand hold it. That quote often kept me from giving up.

Would you talk to your friend the way you talk to yourself? You wouldn’t even talk to a stranger like that.
That one came from Ali. When I would catch myself looking in the mirror telling myself how stupid I was, or how ugly I was, or how useless I was….I would think about what Ali had said. It took a long time and a lot of practice, but I’ve become much more gentle and loving toward myself as a result. Those words literally changed my life.

One last quote…”You can learn a lot from a tree. They are strong enough to stand tall, but flexible enough not to break in the wind.” That one actually came from me. I was at a very difficult and painful point in my life. Things were changing and I was having trouble changing with them. I was sitting outside watching the wind blow in the trees when those words came into my head. I say it came from me, but I don’t think that’s quite right. I think it was given to me by a much more intelligent and loving Being. I was just the one who needed it at the time. I think it proves the first one I listed, “God’s got you.

What about you? Have you ever been told something that truly made a difference in your life? Who’s quote have you grabbed on to and not let go? I’d love to hear about it.

Until next time…

My Opinions

Hello dear reader.

Today has been an interesting day, to say the least.  I saw Dr. K.  He said my MRI was “as normal as it gets for me.”  Everything is “stable.”  This is good news, and not so good news.  It’s good because it means I don’t have to undergo another surgery, always a good thing, right?   The not so good part is now we have to find out why my symptoms are returning.  With surgery there would be a definite end in sight.  That’s not the case now. 

I remember at one point, when things were really bad with the pain (several years ago), I asked Dr. K. if this disease (Chiari) would kill me.  He told me “not anytime soon.”  I cried for days because that meant there was no end in sight to the pain, the weakness, and the feeling of being useless and a burden.  I  can endure anything as long as I know it will be over at some point.  The hardest part of this is not knowing if that’s the case.  So often it feels like it will never end.

Enough about that…
I’ve been very involved in some research recently which will probably raise a few eyebrows.  I’m studying the Koran.  I’m marking the similarities between it and the Bible.  I intend to write a pretty extensive piece on how much the two religions have in common.  I’ve found many things that are different, but have been amazed at how many stories parallel each other.  I think it’s going to be a really good article.  My hope is to reduce some of the  prejudice toward Muslims by showing the things we have in common.  Every religion has extremists who do horrible things in the name of God, but those are the exceptions, rather than the rule.  I think it is a horrible shame that those people are seen as the norm, as representatives of that  particular religion.  For example, Pastor Terry Jones of the Dove World Outreach Center in Gainesville, Florida decided the “Christian” way to World Outreach was to burn Korans. Then we have Pastor Fred Phelps of the Westboro Baptist Church who spreads God’s love by encouraging violence against law enforcement officers and especially gays and lesbians. People like that give Christianity a bad name, just as the Boston Bombers and 911, among others, give Muslim a bad name.

Since I’m on a roll with controversial subjects tonight, I would love for someone to explain to me how same-sex marriage will “destroy the sanctity of marriage.” I am a heterosexual who is getting married next month. No matter how many same-sex marriages happen, the sanctity of my marriage will not change.

I simply cannot abide all of the prejudice and judgement I see every time I turn on the news. I’m very sad to say that a large part of it comes from so-called “Christians.” The meaning of the word “Christian” is Christ-like. I’ve studied the Bible my entire life. Christ’s life was about compassion, love, acceptance, healing, forgiveness, etc. There is no place in the Bible where He condoned violence or hatred.

What I write here is strictly my opinion. You are certainly entitled to have a differing opinion. As a matter of fact, I would love to discuss these differences with you in a respectful and civil manner.

I have no idea why my writing went this way today, but it just goes to show that you never know what’s going to come out of my head. I’ll try my best to focus on something much more positive next time.

Until then…

Taking a chance

Hello dear reader,

I’m writing this on my way to my doctor’s appointment in Golden.  Tim’s driving, so no need to worry.  😉   We’re going to try a temporary nerve block today.  Pain blocking medications will be injected into my head where there are a series of nerves.  This should temporarily eliminate at least a large amount of the constant pain in my head.  If it works they’ll do it again in 2 weeks.  If the second time also has the desired result then I’ll have a procedure to have it done permanently. 

I have to admit that I’m nervous.  We tried this before (three years ago) and it failed miserably.  I spent three days in excruciating pain.  So why am I doing it again?  That’s a legitimate question.  Nerves grow.  I’ll bet you didn’t know that.  They grow very slowly, but they do grow.   That’s why it may work this time.

The chance of it working is worth the risk.  I can’t express how much different my life would be if the pain were even just lowered.  The days that I hurt too much to function would be the exception, rather than the majority.   It would improve the quality of my life exponentially.

One week from today I’ll talk with the doctor about what showed up on the MRI.  Even if this procedure today is successful, there are still several other symptoms of the Chiari which need to be dealt with.

                                              …………………………………………………

Procedure is finished and I’m on my way home.  They did three nerves… different from the one they did before.  I think it may actually be working.  The bottom of my head (where the headaches usually start, at the base of my skull) is numb.  It feels very strange.  The top part still hurts like hell (I’ve had a pretty major headache since Tuesday evening), but the bottom doesn’t.  I have to keep a “pain diary” for the next five hours.

The other strange thing is that I feel woozy…dizzy and a little bit sick to my stomach.  That’s strange because they injected directly into the three nerves, sort of like the dentist deadens only the place where the tooth they’re working on is. 

I’ll let you know how it all turns out.

Until next time…

Lots of news

Hello dear reader.

Before I say anything else, i need to apologize for my long absence. It was caused by many factors which I’m not going to list here. Bottom line….. I’m very story. It won’t happen again. Please forgive me?

On to better news…

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This is Duke, the newest member of our little family. He is 8 months old. He had a very rough start in life. He was found living under an abandoned trailer at an Indian reservation in Arizona. He was with his mother and a younger litter of puppies. Duke and his mother were both literally skeletal (we have pictures, but I won’t do that to you). The younger litter was almost dead from dehydration since the mother had no nutrients to make milk from. There is a lady out there who goes out onto the reservation rescuing dogs. I don’t know her name, but God bless her! Duke was so afraid of people that it took two months of her bringing food out there to him before he would go with her.

Duke needed a place to feel safe and secure, a place flowing with food and water. It took a couple days (of course) for him to relax. But I think you’ll agree he has done that now…

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He is stretched out on the couch hugging the toy he was playing with when he fell asleep. Yes, the tip of his ear is missing. That’s part of that rough start too.

Duke is a shepherd mix. He howls like a husky and has spots on his belly like a healer…his face kind of has that shape too…so we think he is a shepherd/husky/healer. Whatever he’s made up of, he is just as sweet as he can be!

On to other news…Wow! I heard that in a TV anchor-person voice! Weird!…

I finally got my MRI done last week and will see the doctor to discuss the results a week from Thursday (the 6th). I should know then where we need to go from here to try to get some semblance of my life back. That’s a pretty important date for me. Of course I’ll post about it.

Those of you who are waiting for more of “Shining Moon” won’t be waiting much longer. The next part will be posted by the end of the week.

Thank you for your patience, your support, and your willingness to read a semi-crazy woman’s writing.

Until next time….