Headache from hell

When I write I have the chance to think about everything I want to say and how to say it. If I say it wrong, I can go back, delete it, and try again.

Hello dear reader.

Today is day 3 of a mind numbing headache. I got about two hours of sleep last night because of it, so along with this insane pain I’m exhausted. I’m going to try to write a post that makes sense, but I can’t promise anything.

I need to do something to distract my mind from how horrible I feel. That itself is a challenge. Reading hurts…too much light. Watching TV… same thing. Writing… hurts like hell but I’m doing it anyway. Pain meds? I can’t take them again for five more hours. Muscle relaxers… not helping at all.

So why am I writing when it hurts to do it? I’m writing out of desperation. I’m hoping one of the wonderful people who read my blog (I hit 150 followers yesterday 👏) has an idea for how can I distract my mind from the pain when I need to be laying down in a dark, quiet room?

I’m having trouble communicating because of the pain. But I can do a better job writing than speaking. When I write I have the chance to think about everything I want to say and how to say it. If I say it wrong, I can go back, delete it, and try again.

I know this isn’t a very cheerful post, but it’s my truth right now and you, dear reader, deserve nothing less than complete honesty.

I’m seriously open to any ideas. There’s a comment box at the end of this post. Please feel free to use it.

Until next time…

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The Crackdown

It’s literally life and death and I, for one, will not go down without a fight.

Hello dear reader.

I read an article in the New York Post written by Betsy Mccaugh called The Insane Crackdown on Pain Medication. I’ve written several posts about this issue, but I believe people like me who deal with chronic pain are the invisible casualties of this “crisis” and I’m doing all I can to be seen.

Here are some of the facts being overlooked or twisted…”Politicians parrot a false narrative that millions of people are becoming drug addicts because of prescriptions their doctor gave them for pain.” The truth is that…”Only about 1 percent of patients prescribed opioids for chronic pain become addicted — according to a systematic survey of peer-reviewed medical studies

Here’s another fact that contradicts what we’re being told by the government…”Illegal drugs cause nearly all overdose deaths, not drugs patients get from their doctor.The fact is that “Fewer than one in five overdose victims even had a prescription drug in their system, and it was virtually never the only drug.

Here’s what it boils down to, the people abusing pain medications get it illegally, and will continue to do so. That’s what needs to be stopped.

It’s very difficult to misuse pain medications you get from a pain management doctor. I go to my doctor once a month (a five hour round trip). Every visit I am required to do a UA which looks for every drug in my system, including alcohol. If anything besides my prescribed medication is found, I risk no longer being treated there. If the levels of my prescribed medication are wrong (too high or too low), I am at risk of no longer being treated there. What’s wrong with the levels being too low? That means you either took too many when you got them or are selling them. I’m sure there are ways around these safeguards, but it wouldn’t be easy and I don’t think it could be done for any length of time.

I went to my doctor last week and while I was there I asked him what to expect going forward. He told me about ‘morphine equivalency’ and that by the end of this year nobody will be able to be above a morphine equivalency of 90. I asked him what the morphine equivalency of what I take now was. He did some quick math and said approximately 170. So my pain medication is roughly going to be cut in half.

With the levels I’m on now, I’m functional approximately 60% of the time. Cut that in half and I’m looking at being in too much pain to function 70% of the time. That’s not a life. It’s torture.

There are many other people in the same situation I’m in. We need to make them see us, make them realize what they’re doing to us, and hopefully change the way this crisis is being handled. Personally, I’m scared to death. If you or someone you know lives with chronic, debilitating pain please add your voice to mine. It’s literally life and death and I, for one, will not go down without a fight.

Until next time…

Strength

I don’t have a choice about what I have to deal with, but my husband does.

Hello dear reader

The following link is to a post I wrote exactly two years ago. I don’t normally “recycle” old posts, but this one is worth putting out there again. It came straight from my heart when I wrote it originally, and I believe it even more today.

I hope it makes you think.

Until next time…

http://lynnetteok.com/2016/03/17/strength/

The Party

Because I think people who deal with this need to know they aren’t alone…

Because tomorrow may be different and give someone hope…

Hello dear reader,

Today’s one of those days that I really struggle through. It’s been a rough few weeks, to be totally honest. When things go on for an extended period, my physical pain calls the mental pain and they throw a big party.

I’ve had this same headache for three weeks now. A little over a week ago, my oxygen levels and blood pressure decided they wanted to join in. Oxygen levels can be handled. I have a machine in my house, and I just drag tubing around behind me. The blood pressure? That’s a different deal. I have hypotension, which means my BP goes low. That’s something I just have to ride out unless it gets to the point that I have to go to the hospital.

The continuous headache makes my neck and shoulders spasm. That’s easy enough… take a muscle relaxer, right? But muscle relaxers lower your blood pressure and respiration, so which is worse?

When all this has gone on for a while, the final guest arrives… depression. It brings its own friends like “What’s the point?”, “This is never going away.” and “You’re useless.” They sap away any little bit of energy I have hidden away.

Tim left for work around 6 this morning and will get home around 5 this evening. He works hard all day. My big accomplishment today? I got dressed and crawled back into bed. I’ll have to text him soon and ask him to stop at the store and get a “quick fix” for dinner because I can’t stand up long enough to cook. He’ll say, “No problem honey.” and after working all day he’ll stand in line at the grocery store to get something he can just pop into the oven. He deserves so much better.

This has turned into a rant, which wasn’t my intention at all. So why post it?

Because I think people who deal with this need to know they aren’t alone…

Because tomorrow may be different and give someone hope…

Because it’s my truth…

Until next time…

Background

I’ll be blunt about things. There isn’t enough sugar to coat this mess.

Background

Hello Dear Reader,
It’s been a long time. I’m starting my blog again with a new name and a different perspective. I live with constant pain. The myriad of things that cause my pain are explained in the “About Me” page.
A couple years ago, I had been told I was terminal, had about a year left (from the COPD). After going through the nightmare of telling the people in my life, I was told it had been a mistake. I do have COPD, but it’s not nearly as advanced as they originally thought.
Everyone was very glad to hear that news, of course. Everyone, that was, except me. The last post I wrote was in October of 2016. You can read the post for yourself if you’d like, just click here…Trying to Live The Reader’s Digest” version is that I had been relieved to have an end in sight to the pain and it had been taken from me.
Sometimes I’m so thankful to be here and to have the life I do. I have a truly incredible husband. He told me many years ago that it was his mission to make sure I laughed every day, and he does. I have children and grandchildren that I love dearly, and the best friends anyone could ever wish for. I have a couple of dogs that are a never-ending source of love and entertainment. I live up in the Rocky mountains and the beauty around me still takes my breath away. I have everything anyone could ever want.
I also have the nightmare of never-ending pain. Sometimes I can push through it and actually accomplish things. Sometimes I can’t lift my head for days at a time. Sometimes I can’t get out of bed for weeks at a time.
So I’m starting a new blog called Chronic Living. The chronic pain isn’t going anywhere, but I don’t have to let it define my life.
Why blog about it? There are millions of other people in the same situation I’m in or worse. Maybe putting it out there, the good and the bad, the beauty and ugliness about it, the constant struggle to live, I might be able to help someone through a day. I might open their eyes to something they hadn’t seen before. All the people struggling with this situation also have people who love them and want to help them. Maybe they can get a little bit closer to understanding, or maybe feel a little less helpless.
I can’t make any promises about what this blog will do. I can, and do promise that I will give you complete honesty. I’ll be blunt about things. There isn’t enough sugar to coat this mess. I promise I’ll respect and try my best to answer any questions you ask. I’ll be open-minded and try to learn from you. I tend to go off on tangents and might follow a post about depression with one bout how to crochet a baby blanket.
I hope you’ll come along on this journey with me. Don’t know for sure where we’re going or how we’ll get there, but we can figure it out together.
Until next time…

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Focus

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.

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…..