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…

Courage

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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…

Strength

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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…

Focus

Hello dear reader,

Before I begin today I should tell you that some of the things I’m writing today may have been written before.  When I decided to begin this blog again, I cleared out all of my old posts.  There are things in them that some people may not like.  But today I restored all of them.  They’re all truth.  They’re my story and my perception.  If anyone doesn’t like what I’ve written, they don’t have to read it.  The final reason for restoring them is that, in my humble opinion, there is some good writing there. 😉  So if any of this is repetitive I apologize for that.   That being said,  let’s go!

I’ve learned over the years that if I focus on my pain, my pain takes over my life.  So I try my best to focus on positive things.  Thankfully, I have many of them.  One of the most positive things in my life is St. George Episcopal Church.  I know I’ll forget something from the long list of things they do, so here’s a link to their website.

St. George Episcopal Church

I went to St. George over 11 years ago by accident.  Honestly, I went to the “wrong” church.  But I immediately wanted to be a part of the things they did.  All my life I had heard it preached…feed the hungry, clothe the naked, visit the sick, etc.  Usually what followed that was “we need your money to do these things.”  At St. George I never once heard that preached.  I never heard demands for money.  I saw these things being DONE.  It wasn’t a spaghetti dinner once a month for the homeless.  It was a daily way of life for these people.  I actually heard that my time and energy was more important than my money!  So I jumped in with both feet.  This, just like the mountains, was where I belonged, what I had been looking for.

I began volunteering where I could, helping with the meals, putting together a cookbook to help fund our new (desperately needed) roof, crocheting things to be sold (also for the roof).  The more I got involved, the more I loved it.  I ended up on vestry (sort of the decision makers for the church) and loved that too.  Eventually I had my own day at the meals.  I cooked every Tuesday, I believe it was.

It was during this time that I was diagnosed with Chiari.  I spent three months staying with my wonderful brother (I love you Donnie) in Ohio and had the first of what would be many surgeries.  The Cleveland Clinic was wonderful.  I got a good 9 months of recovery from it.  Unfortunately, all of my symptoms returned and the pain was unbelievable.  I was told that my brain was coming out of the base of my skull.  During that period a good day was one in which I made it out of the bed and on to the couch.  People from the church would come to my house and give me communion.  One of St. George’s priest (Ali Lufkin) makes wonderful pottery and made a beautiful little cup for my communion.

Obviously I was unable to give anything to the church, I had nothing in me to give.  My husband and I (who met at St. George) had been together about three months at that point.  He was doing everything he could to keep the bills paid and help me.  I’ll never forget one day specifically.  Tim had hitch hiked over the pass to do snow and ice removal (we had 3 – 4 cars, just none that ran) and then hitch hiked home soaking wet and freezing.  When he walked in the door I told him that we would have to order pizza or something for dinner because I just couldn’t cook.  I felt terrible about it.  He sat down beside me, put his arm around me and said, “I’m so glad you got some rest today.”

If you’re new to my blog, you’ll soon discover that I sometimes get sidetracked when I’m writing.  The point to today’s post was that I cooked at the church yesterday.  I’m paying for it today, as I knew I would.  But it is one of the most positive things in my life.  I have fun and get to spend the day with around 50 wonderful people.  I absolutely love it when I can do it.  It keeps the useless feeling away.  For me, that feeling is worse than the pain.

So I got sidetracked today, but hopefully you learned a little bit more about me and how I survive Chiari.  Maybe, if I’m lucky, I gave someone a little bit of hope that this disease doesn’t have to be the focus of your life.

Until next time…..

Headaches and wedding Invitations

Hello dear reader.

Today is an awful headache day.  Well, it actually started around 11 last night when it woke me up.  I managed to fall back to sleep at around midnight, but by 2 a.m. it was a lost cause.  It’s super frustrating because I seriously don’t have time for this right now.  There is so much I need to be doing, but I can’t. 

Onto something brighter…I have to brag. Yesterday I discovered that I had made a significant mistake with the checking account and put us into a pretty bad situation. When Tim got home last night (after a 10 hour workday) I listened to him tell me about what a good day he had. You know, the first few minutes determine the mood for the rest of the evening, so positive was a good way to start. The last thing he said was, “It’s been a really good day.” I replied, “I’m so glad, but I’m about to ruin it.” I burst into tears and told him what had happened. This man…the one I get to marry in a week and a half…put his arms around me and told me it was okay. He said with so much going on it was no wonder I made a mistake…that we’d get through it and it wasn’t the end of the world. I couldn’t stop crying, but then it was out of relief.

Speaking of the wedding, a wonderful friend of ours made our wedding invitations for us. We mailed out all the ones going out of town, and the other day we got the ones to hand out locally.
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Is that not the most beautiful thing?!? The invitation is rolled up inside that beautiful tube. There is no way I can ever show or tell how much I appreciate this. It’s another amazing example of the incredible friends we have!

That’s about all the “brighter” I can do right now. My head is still hurting terribly and I’m going to lay down and try to get some rest.

Until next time…

Goodbye my friend

Hello Dear reader.

I’ve missed you. Did you miss me? I apologize for not writing, but unfortunately it’s been a really tough couple of months for me physically. While writing is not a physically strenuous task it does require clear thinking. My head is anything but clear when the headaches are bad.

Lots of things have happened since I last wrote, both good things and bad. I won’t bore you with the minor things, just the big stuff.

I’m missing a very close friend who passed away from a heart attack on Sunday, July 23rd. I’m still having trouble wrapping my head around how it happened. It’s kind of a long story, but I need to tell it. Brenda had been in the hospital with double-pneumonia. I had been to see her several times just to visit with her. She was really excited about the wedding coming up. The last time I saw her was a Friday. I brought her some food (the food at the hospital here is horrible) and we talked. She looked 100% better than she had on Thursday, and told me she felt much better She told me, laughing, that she couldn’t die because she didn’t want to miss the wedding, but if that happened, she’d come haunt it. I thought nothing of it. Brenda joked like that a lot. Saturday I talked to her on the phone. She hadn’t slept well the night before and was going to take a nap. I told her to call me back after she woke up and I’d come by. I was having a bad headache day myself, and when she called back I was asleep. She left a message on the answering machine (which I can’t make myself delete) saying that I could come by whenever I wanted to. My headache continued to get worse, and by Sunday I couldn’t get out of bed. I got some food together to bring her on Monday. I called the hospital and they told me that Brenda had been discharged. This was great news. So I took the food that I had for her to her house. I was still in excruciating pain, so I was just going to drop it off and then come home and lay back down. Brenda’s husband, Scotty, answered the door when I knocked. Now to understand the rest of this you have to understand a couple of things about Scotty. First of all, Scotty was in a bad car accident a while back that left him blinded. Second, he has terminal cancer. When Scotty opened the door, I said as cheerfully as possible, “I was going to bring Brenda some food at the hospital, but they told me she had gone home so I brought it here instead.” The “cheerfulness” was so Brenda wouldn’t worry about me. Scotty said, “Brenda’s dead. She died last night.” As horrible as it is, I thought he was joking. I said, “That’s not funny.” He said, “No, it’s not.” He then told me the story of what had happened. Apparently, they were going to discharge Brenda Saturday, but decided to keep her over the weekend and get a little more antibiotics into her just to be safe. On Sunday, she got a letter saying that if she didn’t pay her 20% co-pay for her medical bills they were going to take her house. I’m really not clear about who the letter was from or why she got it on a Sunday, but she freaked out. She said she was not staying in the hospital making more medical bills that she might lose her home over and checked herself out of the hospital and went home, which is about three blocks (Leadville blocks) from the hospital. I don’t know why she didn’t call me then, but she didn’t. Scotty said three hours after she got home she went into the bathroom and he heard her fall. He couldn’t wake her up. I’m not real clear on this next part either, but he said he called the hospital. They told him they couldn’t do anything unless he called the police. Scotty then made his way across the street and his neighbor called 911. By the time the ambulance got there, Brenda was dead. Her memorial service is tomorrow at 11 a.m. I thought losing Sampson was bad. I’m still having a hard time believing this is real, much less having a clue how to deal with it.

On a much brighter note, Tim landed a really great job. He is a supervisor for a big roofing company. He gets an annual salary (not huge, but not bad either), with benefits, a company truck, a cell phone, the whole nine yards. We’ll have a year-round income instead of the famine/feast that has always been a part of roofing. The very best part is that he comes home with a smile on his face every evening. He loves the job, and he’s good at it. I’m extremely glad he’s doing something he enjoys.

On the medical front, I’ve had two “trials” of a procedure in which they deaden some of the nerves in my head. The trials involve injecting a deadening solution into the nerves, similar to what a dentist does in your mouth. The effects last roughly five hours each time. Both of the trials were very successful so now we’re going to do it on a permanent basis. To understand this, you have to have an idea of how my headaches work. Most of the time, the pain starts in the base of my skull. On a not-so-bad headache day it stays there. On a bad headache day, the pain then spreads up and around until it feels like my head is in a vice. By that point, moving at all is excruciating. Once I have this procedure done, the nerves which carry the pain from the base of my skull to about halfway up my head will be permanently deadened. The headaches will still come, I just won’t be able to feel them. It should eliminate the pain of the not-so-bad headache days completely. I don’t know about the bad days, whether the pain I won’t feel will still spread to the rest of my head, which I will still feel or not. Either way, this should improve my quality of life immensely. Really exciting stuff!

The countdown is on…25 days to the wedding. Things are coming together nicely, thanks to a lot of really amazing friends.

Well, I think I’ve rambled enough here for a while. Thanks for taking this journey with me.

Until next time…