Trying to live

Hello dear reader.

It’s been quite a while since I posted on here. Much has happened and I’ve been trying to figure out how I feel about things before I post about them on here. Months have passed and my feelings are still all jumbled. I don’t see that changing in the near future.

So you, my friends, are going to get things the way they are…confusion and all. I’ve always been honest with you and that will never change.

Here’s a quick recap of where things stand: In February I got pneumonia, which set off a whole chain of events. I wasn’t getting better no matter how many antibiotics I took. While I was finally able to get the fever down, I was not able to get my oxygen levels up. After more pictures and blood tests, my primary care doctor found a spot on one of my lungs and was very concerned it might be cancer. Next stop was a pulmonologist. He looked at the pictures and told me it wasn’t cancer. It was COPD and I was terminal. I went through the nightmare of telling my family and friends that I was dying. That was a horrible experience. 

The pulmonologist ordered more tests to give me a better idea about how long we were looking at. Those tests had some unexpected results, so he sent me for more tests. These were on my heart because he thought I might have cardio-pulmonary edema.  After everything had been looked at, I was told that I have emphysema. I was not terminal.

This was very happy and exciting news for everyone….well, almost everyone. I had finally seen a light at the end of the tunnel. There was an end in sight to all of this pain I’ve dealt with for so long. Then the tunnel got dark again.

I knew I was supposed to be happy about my wonderful news. Everyone else was thrilled. However, nothing changed. I’m still in pain 24/7. I still have no energy at all. So I’m not dying, but I’m not living either. I’m simply existing in a world of pain and exhaustion.

I’ve been trying very hard to push through it all, to get up and get something done no matter how I feel. I have to start somewhere, right? But for every two days I’m productive I spend four in bed in too much pain to move. I sleep 20 out of 24 hours. It’s two steps forward and four steps back.

I don’t know where this is going to go. I do know that I’d like to bring you along on the journey if you’d like to come. 

Until next time…



Hello dear reader.

This message literally took my breath away when I saw it. I originally looked at it because I thought it was such a beautiful picture of a lion. Anyway, I had to read what was written there several times before I really grasped it. So go ahead, read it again. Let it truly sink in. I honestly believe that this is the best and most accurate definition of the word Courage I’ve ever seen.

It’s more than a coincidence, in my opinion, that I was discussing this very concept with my therapist just last week. Yes, I go to a therapist. I truly think this world would be a considerably better place to live if everyone did. So I wasn’t saying it nearly as well as this picture does, but I was doing my best to express this sentiment. My example was that so many people are quick to say “I’d die for my (insert children, spouse, best friend, etc. here).” That’s quite a statement of devotion. But the more difficult question, in my opinion, is Would youlive for that person? The way things are right now, dying would be much easier than living is. Every morning when my consciousness returns but before my eyes are open the pain hits me. I reach for the pain meds that are on my nightstand just for this purpose and I take one. I wait about 20 minutes and decide if I should try to get out of bed yet or if I have to take another one. In the meantime my bladder has decided that I need to be in the bathroom NOW! My full bladder begins to yell at my legs, back, neck and head to get over the pain and let’s go. My legs, back, neck and head yell back to my bladder that it needs to quit yelling at them and talk to the blood stream about getting the medications to them. You get the picture. This is the very beginning of my day. It doesn’t get much better from there. It roars during every moment that I’m awake.

Here’s the flip side. I have children and a husband and incredible friends. I love all of them more than words can say. I can’t do much to show them how much I love and appreciate them. Hell, I can’t even keep my house clean. But they are the little voice at the end of the day that drowns out the roaring. I do the only thing I can do to show how powerful my love for them is. I live.

Until next time…

Strangers Among Us

Hello dear reader.

I’ve started working with a program called Net Galley. This cool organization lets me read books before they get published and give my opinion on them. The cool part for you guys is that you get a heads-up on the awesome ones before they hit the shelves.. See, I have to give my opinion, good or bad, to Net Galley. But I will only talk about the good books on here. (Wink)

So here is my first review for you. The book is called Strangers Among Us and is due out in August of this year. It’s a book of short stories by different authors. I enjoyed some of the stories more than others, of course. But I didn’t dislike any of them. I highly recommend grabbing a copy of this book as soon as it becomes available.
The review I wrote for Net Galley goes as follows:


Strangers Among Us is one of the best books I’ve read in a long time! Once I started reading it, I couldn’t stop! Most books of short stories have a few good ones, but mostly ones you rush through hoping that the next one will be better. That was not the case with “Strangers Among Us.” Every story stood on its own and was a pleasure to read. Many of the stories had me wondering if my reality is real. Many of the stories gave me hope. All of the stories made me see things in a different light. A truly enjoyable and thought provoking book.

This is something I will be posting on my blog from time to time. Not to worry though, most of my posts will continue to be my usual ravings.

Let me know what you think about this. Would you like to hear about the books that I didn’t like as well as the ones I did? Did you like the post? Did you hate it?

Until next time…..



Hello dear reader.
I hear a lot about what a strong person I am. You have a genetic disorder?  You are so strong! You’ve had five surgeries on your head?  Well you look wonderful!  I don’t know how anyone deals with constant pain.  You are so strong!  How does that make me strong?
If I have a day or two that I get really emotional and cry at the drop of a hat, is that weakness?  If I have to cancel on something I promised to do or say “No” to something I really want to do because the pain won’t let me do it, does that make me weak?  What if I turn off my phone and escape into a book because if I have to talk to one more doctor about one more new thing that the Chiari has caused I will scream?  Does that mean I’m weak?  
Personally, I don’t think any of that has anything to do with strength or weakness.  I deal with the pain and all the rest of the crap because I don’t have any choice.  If you know of another option, I’d dearly love to hear it!  I get emotional and cry because I don’t have a choice.  I hide in a book as a survival mechanism, so I can spend some time not crying.  I turn off the phone to keep from losing what little bit of sanity I have left.  That’s not strength or weakness.  It’s survival. 
I’m no stronger and no weaker than the next person.  If you found yourself in the same situation that I’m in (God forbid!) you would do whatever you had to do to get through a day.  You would search for anything positive you could grab hold of. You would try your best to enjoy the good days at least 10x more than you hate the bad ones. Mostly, you would handle it in whatever way works best for you.
One last thing….I believe that if you’re looking for strong people you should look for the people who see the worst of it and love you anyway.  They watch someone they love going through hell and can’t fix it.  They hold your hand and let you cry and keep trying to find a way to make it better.  What makes them so strong? They don’t have to go through it. 
I don’t have a choice about what I have to deal with, but my husband does. He still comes home to me every day, checks on me if I’m in bed too long, helplessly watches when I’m in horrible pain, and makes me laugh EVERY day.  He’s the strong one, not me. Thank you Tim.
Until next time…


Hello dear reader.

Today’s post started out being about going to the doctor, actually many doctors.  I wrote about a paragraph, read it, and promptly deleted it.  Sure, I could throw a couple of cutesy (yes that is a word.  I looked it up) little things in there to make it less depressing.  I could tell you about the new medications (with horrifying “possible side effects”) to make it more informative.  But to be perfectly honest, I’m almost as tired of talking about doctors as I am of going to them.  The “delete” button is one of the most important parts of a computer, maybe the most important.  Could you imagine if it wasn’t there?  I’d be terrified to touch a keyboard.  Who needs spell check?  Okay, I’ve gone off on another tangent. 

Yesterday was an absolutely incredible day.  I have to give you a little bit of back story for you to understand the incredibleness  (also in the dictionary) of it for me, but it won’t be long. I promise. I have been a part of St. George for more than 11 years. I love helping at the meals when I can. I've been on the vestry a few times. I met and became friends with my husband there. He proposed to me there during the Christmas Eve service. And of course we were married there. I’ve always loved the services there. I come away from them feeling refreshed and with something to think about. A few years ago, St. George’s began having the services on Sunday evening instead of in the morning. Unfortunately, that made it very difficult for me to attend. Everyone gets tired as they go through their day, but for me it’s worse. As the day goes on, my energy levels drop drastically and my pain levels increase. By late afternoon (3 or 4) I’m done. I’ve desperately missed being able to go to services. It’s been extremely difficult to stay on track with my spirituality, which is something vital for me. I promised this explanation wouldn’t be long and it’s almost done. I had made it clear to the priest of St. George, who’s also a wonderful friend of mine, how difficult this situation was for me. She got the idea to have “brunch church” once a month. St. George’s is very much about food. Once a month the service is in the late morning (11ish) and it’s a pot-luck. The service is held around the table. Yesterday, for the first time in a very long time, I was able to go to services at St. George. I left feeling refreshed and with things to think about. I cried tears of absolute joy. It was like coming home after a long journey. So now you know why yesterday was such an incredible day for me. The best part? This is going to keep happening. I get to have more days like yesterday! I am more appreciative and happy than I have words to express. Me without words! Crazy, right?

On a completely different note, I’m dying to tell you about a book I just finished. It was so awesome! I have a new favorite author and her name is Caroline Kepnes. The book is titled simply You. I listened to it on audiobook and I had earplugs in as often as possible, while I was doing housework, laundry, cooking, crocheting, knitting, and laying down to rest. This book had me hooked from the first sentence and I was so sad when it ended that I immediately got the sequil Hidden Bodies and started it. The first sentence I was yelling, “Oh my God! No way!” and I am again hooked. I do have to warn that there is a lot of rough language and a lot of sexual content. So if either of those things bother you then ignore my rantings. But I would truly be doing my readers a disservice if I didn’t tell you about this. Don’t take my word on it. I found an article from the Huffington Post . I told my daughter about it last week and she devoured it in like 3 days. The whole time she kept calling me freaking out about it. It was kind of funny. I feel a little bit bad because she doesn’t have Hidden Bodies yet, but not bad enough to wait for her to get it!

Speaking of my daughter, she is coming up to visit me on Thursday. I’m extremely excited! She lives about three hours away from me, but it’s amazing how hard it is to get to see her. I’ve been so sick the last month or so that I can’t even make that trip. But she’s making the trip in just a few days and I can’t wait to see her!

This kind of became a random rambling, but that happens with me. It sure was better than talking about doctors and medications, right? I don’t know about you, but I needed good positive stuff today. I hope you enjoyed it too.

Until next time…

This should be fun!

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….

State of mind

Hello dear reader

People say that happiness is a choice. I agree with that only to a point. You can choose whether to focus on the positive things in your life rather than on the negative. That I agree with.

However, there are several reasons why someone can’t be “happy” no matter how hard they try to focus on the positive. Depression can be situational, but is often a chemical problem. When someone is suffering from depression, telling them that happiness is a choice can actually make things worse…much worse.

Depression is a deep dark hole that gets smaller and more confining every day. It robs you of energy and smothers any ray of hope and/or happiness. Guilt weighs on you because you’re depressed, which makes you feelmoredepressed.

Can you imagine feeling that way and then being told that it’s your choice? Or being told to “just cheer up?” Do you think that would help your state of mind? I can promise you that it would have the opposite effect.

So I wrote about depression yesterday. Why am I still going on about it? I don’t really know, it feels important.

Moving on…. tomorrow is my oldest daughter’s birthday. She’s almost to the end of her 20’s. I am constantly amazed at how quickly life goes by. I’m also amazed at how fortunate I feel to be her mother. I loved being “Mommy” when she was little, and I love being “Mom” now that she’s grown. Our relationship is very different now, of course. I’m no longer the person who knows everything, can see through walls AND the back of my head, and always knows when she’s having a bad day. I can no longer solve any problem from a skinned knee to a broken heart with a kiss and/or a cheesecake tart. But I can listen when she needs someone to. I can laugh and/or cry with her. I can give her tips on anything from a roast to a relationship. I can (and do) know that she may or may not follow my advice. She’s a grown woman who can think for herself and make her own decisions. I am so proud of that. I’m thrilled that she asks my advice, whether she takes it or not. In some ways it’s harder to be “Mom” than it was to be “Mommy” because I still want to protect her from the world. I still want to fix anything that hurts. But being “Mom” is wonderful too. I can be her friend now, and she’s a great friend to have. You can’t be a child’s friend and protect them. There are too many times the word “No” has to be said.

I know. I’m ranting again. But these are the things that keep depression from winning. These are the positive things that I try to focus on. I have a great life….a truly amazing husband, great friends, and some great kids (even the ones that aren’t really mine). I live in the most beautiful place there is. I have much to be thankful for. Sometimes I just have to look harder to see past the hard stuff. Sometimes the hard stuff is just too big to see past.

Until next time….