Chronic Pain in the US

An estimated 50 MILLION people live with chronic pain. IN THE UNITED STATES

Let that sink in for a moment.

The CDC says that there are 128 overdose deaths in the united states due to opioids. But they put heroin in with prescription opioids and count that as part of the ‘epidemic’.

I don’t know about you but I don’t use heroin to treat my pain. I’m not making light of the situation, those who use heroin are risking their lives every time. It’s a horrible addiction from what I’ve read. But let’s bring in some common sense. Most (not all) heroin users CHOSE to use heroin. I didn’t choose to have chronic pain – specifically a nerve bundle (or several) trapped in my abdominal wall that causes horrific pain.

Pain that I am no longer allowed to be treated for with opioids. Regardless of the fact that I was not / am not addicted. Regardless of the fact that I followed every rule, and requirement. Regardless of the fact that I tried the other methods of pain relief they put me on with disasterous results.

The chronic pain community has been marginalized and it is not right. Are we not entitled to caring, competent care? Aren’t we allowed to have relief from pain that works with minimal side effects?

Many of us suffer from other chronic/incurable conditions in addition to chronic pain. Our bodies have a very small threshold for changes in our prescriptions. In my case, any changes cause my Meniere’s disease symptoms to flare dramatically. If a medication says it may cause dizziness – it will cause violent vertigo in my case, and I can’t afford to be bedridden for weeks. The doctors at the pain clinic told me I’d eventually get used to the side effects.

What part of competent and compassionate care is that??? I miss the days when my doctor and I discussed treatment options and decided on a best course of action. I hate that someone stepped into my appointments without my permission and denied my care.

I am currently not using any prescription medications for pain – although, frankly – I wish I was. For the last couple of years, I have pain relief from a combination of herbs which I brew into a tea, or powder into capsules. This, plus over-the-counter Tylenol and ibuprofen do help with the constant pain. But nothing helps with the breakout stabbing, throbbing, making me scream pain. when I get that, which is frequent, I have no stronger options for relief.

Because I’m not allowed.

Admiration

I would like to say something about grace. Specifically, grace under fire.  Specifically, Judge Amy Coney Barrett’s behavior during the senate judiciary committee confirmation hearings. 

I have been listening and watching for the last two days. She has been asked hundreds of times to opine, affirm, or deny a position she may or may not have on cases that are currently, or may be in the future before the Supreme court. She is ethical to the highest degree in that she will not do that.  What galls me is that not one of the democrats in the committee is listening to her answers. They ask her basically the same thing over and over and over. Its insulting how they are trying to trap her. She has been talked over, her integrity questioned, her beliefs questioned, and so on. And through it all, she is respectable, congenial, attentive, direct and succinct.

I do not care if you are a democrat or a republican, (notice I do not believe either of those should be capitalized!!!), but I think you have to admire her graceful and respectful answers anyway. She is a smart, articulate, highly intelligent, and strong woman who I admire greatly. And I did not even know her before these proceedings.

I am not trying to start a war with my comments, and I still really do not care which ‘side’ you are on. I am only commenting about one individual and her incredible grace under fire.

I am proud to be a woman today. 😊

Updates

It has been such a very long time since I blogged here. I know, I say this every time I haven’t written in the blog for a while. I am keeping up with my journal though, which was a major goal of mine this year. Let’s bring you up to speed:

First, and most important, Michael was diagnosed with cancer in February and had surgery to remove the cancer on March 16th at Johns Hopkins in Baltimore. He spent several days in hospital. It was a painful procedure, and difficult recovery but he’s cancer free now at six months. The day of his surgery the city of Baltimore shut down due to the virus and overnight the streets were empty. So when I got back to the hotel after being with Michael during the day, my sister and I would walk the empty streets and gaze in the closed windows of Fells Point. It was surreal but the lack of hustle and bustle was a balm to my nerves. I am forever grateful for the extraordinary care given to Michael and the help and support given to me during that time.

For a very long time I had been wearing a patch over my left eye, like a pirate – yes, because my eye had turned inward so much I couldn’t walk without running into things, falling down stairs, tripping over everything, and so on. I was scheduled for eye realignment surgery in April but the Pandemic hit so it was cancelled until the end of August. I had to say it was/is a difficult recovery. I don’t know why I thought this but I just assumed its only my eye, I’ll Be back up and running very quickly. Ummm, nope… Brutal headaches, dizziness if I move my head too quickly from side to side, not to meantion that I have feel more exhausted than I thought possible. This also coincided with an extra busy time in my virtual assisting practice, which made me want to keep working but having to push myself to take breaks. Michael said he heard my recovery could take up to a year… I swear I didn’t hear that, but its probably selective memory. At any rate it needed to be done. Again, the surgery was at Johns Hopkins and I received exemplary care – but it was a bit scary because Michael wasn’t allowed in.

My chronic pain is still with me. My doctor – the one that does the MRI guided needle placement procedures (In my abdomen) has left Johns Hopkins, and I couldn’t find another – and honestly, I don’t want to start from scratch. He’s gone to a university in NYC and I’m in touch with him. I’m praying the clinic he is starting will be up and running at some point, after it was delayed due to the pandemic. So, every few weeks I check in and see what’s up. Meanwhile, I’m in pain, some days in near screaming agony, with only Tylenol, ibuprofen, and my pain tea. Thank God for my pan tea. Because, of course, if you’re a chronic pain patient, you are apparently an addict and don’t deserve to be treated with medicine that works.

That’s where we are. We’re working to build our studio up (www.hilltop-arts.com) and my photography business (www.hilltop.photos) and my virtual assisting business is keeping me extremely busy. But all of it helps to keep me distracted from what isn’t feeling good on my body. 🙂 I promise I will try to be better about this blog!

Looking cross-eyed at the world

I am literally looking cross-eyed at the world. I’m in dire need of eye realignment surgery due to my left eye turning inward. It just got rescheduled into April. I know it was only two weeks past when the surgery was supposed to be initially, but for someone who is running into absolutely everything because the world is wonky-crazy right now, that’s a long delay.

On 1/01/2020, in the mid-afternoon, I was coming down the stairs with my left eye shut as I have to do most of the time now and opened it for an instant. In that instant, i missed a step and crashed down the last three. I didn’t tumble down, I held on but ended with all my weight on my right foot which was bent at the toes under me. So, broken toes and possible ligament damage, and a sprained ankle (The same one I keep hurting because it hasn’t been long enough to totally heal it.) Ducky. Needless to say, I was off duty for cooking over New Year’s.

I can’t wait for the reallignment surgery! Plus I love going to the surgeon’s office because its all decorated with kids in mind since most are WAY younger than I am. 🙂

New PC Growing Pains

Close-up of real life messy desk in office

Yeah! I love new computers! Ugh… New computer growing pains I can do without!

Every new computer transition has its issues, some are unavoidable, and others…

My new computer has both USB 2 and USB 3 ports. While I was setting up and blithely plugging peripherals into ports, it didn’t dawn on me to be careful where I plugged stuff in. Because apparently, some things aren’t compatible with USB 3. I thought all USB 3 ports were backward compatible, but I guess I was wrong…

Like my marble mouse… It’s not working anymore. On any of my computers. And my headset system. It still works with the desk phone, but will not plug into any of my computers. I’ve changed cords, reset devices where I can, but it still won’t work on USB.

Not even sure what exactly did happen, but it did. Crazy, but I’m getting through.

UPDATE: It wasn’t the USB ports at all, it was a defective USB CD/DVD drive! It caused damage and headaches, but it’s all fixed now. The company where I purchased it replaced it and the marble mice, but not the headset, although they did give me a discount.