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…

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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…

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….

Stigma

Hello dear reader

Note:  There were some issues with publishing this post. I apologize for any confusion this may have caused.

I try very hard to keep a positive outlook on my life, and most of the time I’m fairly successful. But I have to admit that I’ve been in a really bad place recently.  It’s hard to explain, but I just gave up. I didn’t follow up on getting my teeth fixed, or doing the mammogram or colonoscopy my doctor ordered a month ago. I stopped wearing any jewelry or make-up. I didn’t care what I wore, just pulled on clothes because it’s what I had to do. I didn’t keep up with housework or laundry, just did what absolutely had to be done. Nothing mattered. I didn’t want to do anything but sleep. I felt done.

The thing is that I didn’t realize what was going on, or didn’t care. I’m not certain which. Maybe both.  But I woke up this morning and felt different. I got up, took a bath, thought about what I was going to wear and got dressed, and started cleaning the house.  Yes, I know. It was classic depression.  But what I don’t know is where it came from and where it went. 

I’ve dealt with depression for the majority of my life and have been on some kind of antidepressant or another for years. I know the signs and symptoms. I know things that help and things that make it worse.  But I cannot see it when I’m in it.
About three weeks ago I woke up at 3:30 in the morning with a high fever and having convulsions.  My husband rushed me to the hospital, where they diagnosed me with pneumonia. They gave me a prescriptions for antibiotics and home oxygen and told me to follow up with my primary care doctor, which I did. I spent the next week and a half in a LOT of pain and completely exhausted. The one good thing that came out of it was that I quit smoking. I’ve tried so many times and ways. All of a sudden I simply had no more urge to smoke!  Almost worth the pneumonia… maybe.  The point to this long story (yes, there is a point) is that there’s a possibility all of that happening had something to do with the depression coming on.  I say possibility because I believe the depression started before the pneumonia and all that went with it.

So I still don’t know where (why?) it came from or where (why?) it went. I only know that I’m very glad it’s gone and that I have a TON of catching up to do.

I think the reason it’s important to me to put all of this out there is that there is still a stigma about mental illness, which depression is a form of.  But I don’t choose to be mentally ill any more than I choose to have Chiari Malformation or chose to have pneumonia.  There should be no more stigma attached to mental illness than there is to physical illness. 

There needs to be conversation about these things. Only by talking about them can people understand what mental illness is and is not.  Communication is what will bring us out of the dark ages and the fear that goes along with ignorance.

Until next time….

Lessons learned

Hello dear reader,

The last time I wrote I was trying to explain how St. George is one of the positive things in my life.  I got sidetracked (as usual) but that’s part of who I am and the things I deal with.  One last thing I want to explain about the meals we cook five days a week is that everything is donated.  This makes cooking there different from cooking anywhere else.  Normal cooking involves deciding what to make and gathering the ingredients to make it.  Cooking at St. George is the exact opposite of normal.  When you get there you see what has come in and what leftovers there might be from the day before and you figure out what you can make with what you have.  This involves a lot of creativity and experimentation.  But somehow it always works.  I’ve been working with St. George for over 11 years and there has never been a time we didn’t have food.  We feed, on average, 50 people a day.  One last thing…nobody will ever ask you to come to church, preach at you, ask you for money, etc.  The meals are simply a place where people from all walks of life gather over food and create community.  Isn’t that cool?

Okay, enough about that.  My kids have really been on my mind lately.  They always are, but some times are harder than others.  This is a harder time.  I miss them like crazy.  I would give anything to go back to when they were little and all home.  I can look back now and see so many mistakes I made in raising them, but I did the best I could with what I had at the time.  I didn’t have a “childhood” like many people.  I spent those years wishing and waiting for the time I could leave home.  I was determined that my children would have a childhood where they would be able to look back and remember those days as happy and fun.  I wanted them to have good memories of growing up.  My only guidance in how to parent my children was to do the opposite of what my parents did. 

I do not believe in physical punishment.  All that does, in my opinion, is teach children that if someone isn’t doing what you want them to, then you simply hurt them until they do.  Let me be very clear here…I believe children need discipline and structure.  It makes them feel safe and secure.  They know what to expect and they don’t live in constant fear never knowing what will happen.  I do not believe in physical discipline.  I can honestly say that my children were very well mannered and well behaved children.  I heard that from many people.  Off on another sidetrack. 

The point is that kids don’t come with instructions and even if they did you’d need separate ones for each child.  Hindsight, as the saying goes, is 20/20.  I would have loved to know then what I know now.  My children are all grown and have lives of their own.  That’s what we try to prepare them for, isn’t it?  While I know I messed up a lot, they’re all living happy and successful lives.  They all know how to give and receive love.  As far as I’m concerned, that’s the definition of successful.  So I must have done something right. 

I find it quite ironic that by the time we (parents) finally figure things out, our children are no longer there to benefit from that knowledge.  I think the biggest lesson I learned was how important it is to listen, really listen to our children.  A five year old telling you in detail about everything that happened at school today (who got in trouble, who they played with at recess, what they drew, what they had for lunch and whether they liked it or it was gross, what movie they watched, whether or not they slept at rest time, you get the point) can seem very trivial, even irritating, especially when you’re trying to get something else done.  However, ten years later when they want to talk to you about the pressure they feel from their boyfriend (or girlfriend) to have sex or use drugs, now that’s important to us!  The thing people don’t seem to get is that in your child’s eyes they are equally important at the time.  Here’s the real kicker….if you didn’t stop to listen to them when they were five and what happened at school today was important tothem then by the time what they have to say is important to you they’ve given up trying to make you listen.  The bottom line is that the dishes and laundry and other housework is always going to be there.  Your children aren’t. The things that matter to them are important, no matter the age or topic.

I’d love to hear your thoughts on these things. So please feel free to hit that little comment box and tell me how you feel about it.

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…..