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.

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!

Pajama Day

Today is a pajama day. I’m hurting too much to even consider getting dressed in jeans.

So dang tired of pain. But I refuse to go back to a pain clinic. Refuse!  I’ll just take the strong dose of my herbal medicine and go to bed.

Losing the Pain Clinic

Message I sent to my pain clinic recently: “Please destroy the pain contract I have with your clinic. I am managing my pain using herbal methods and it seems to be working well so far. I still experience severe pain, very often, but since your clinic doesn’t want to prescribe the medications that work for me, and instead insist on a protocol that will harm me, I can no longer count on effective care there. Please destroy the contract and let me know when you have done so. 

I have no more faith in your clinic due to the fact that a doctor I’d never seen before – who took over after my doctor left – who didn’t know me, obviously didn’t read my chart, and has the bedside manner of a slug – thought he could bully me into medications that had previously left me bedridden. That’s unconscionable. And it’s not being a doctor, it’s being a jerk.

The experience after my doctor left your clinic has made me wary of everyone there regarding my care. In the future, it will not be at your clinic.”

Writing this message to them means I’ve enough faith in my own abilities to treat my pain myself. I do still have pain, but I’m managing it. Through my herbal remedies and using distraction, I’m doing well. I haven’t had to take an opioid in some time – which is a huge win for me.

I feel empowered, finally.

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Developing a Pain Relief Tea

According to the powers that be, opioid pain medication shouldn’t be prescribed for cases like mine. They, of course, don’t talk to the patients, they only make up these ‘guidelines’ (read: rules) and expect that everyone will fit into those tiny little boxes.  So, my pain doctors have reduced my opioid pain medication and will not prescribe more (suggested that if I want more I should doctor shop for a clinic that still prescribes opiate pain meds).

Unfortunately, I don’t fit into those boxes. Its important with people who have multiple conditions, to not rock the boat so to speak. I have Meniere’s disease (incurable), migraine with aura (incurable), chronic pain (not cured so far), hypothyroidism (on medication), and polycystic kidney disease (incurable). All these conditions – especially Meniere’s disease, I have to be careful to not take or eat anything that triggers a flare. The medications specifically for nerve pain that I tried last year put me into a tailspin and confined me to bed for a very long time. Yet these are the medication that have been ordered for me – or I will not be treated.

I didn’t choose to be a statistic. No one does. But I also didn’t choose to have a government agency (state or federal it doesn’t matter) tell my pain doctor how to treat me.  I’m tired of being likened to a criminal just because I’m a chronic pain patient. So, I am experimenting with different tea blends to bring about pain relief. So far, my results have been moderately successful. Now, if I had been searching for a nice ‘go to sleep’ tea, I’d have found that several times over!

I’m trying:

Chamomile – in all the blends I’m using dried organic chamomile. Not only is it wonderfully relaxing, but it is also a great anti-inflammatory.

Wild Lettuce – organic wild lettuce has natural opiate “like” properties, without containing opiates. Which I really like because my ultimate goal was to be off pain medication anyway. However, it does have sedative properties that make it not really ideal for daytime use. But it puts me into a good restful sleep.

California Poppy – organic California poppy, the California State Flower, is a cousin to the opiate containing poppy but does not contain opiates. California poppy is analgesic, antispasmodic and can provide relief of nerve pain – which is what I have. So far, other than making me very sleepy, it does help with moderate pain relief.

Rose Hips – Surprisingly, rose hips – which I already loved due to their blast of vitamin C and immunity boosting powers – also helps relieve pain. I have been happily adding them to each version of the teas I make.

Valerian – although Michael hates the smell and generally walks right back out the door as soon as he smells it, Valerian is good for pain and is better known for its sedative properties. Although it doesn’t taste that good to me so I’ll probably add it to capsules instead of tea.

Lavender – Another surprise, lavender is a really good pain reliever because of its calming effects on the nervous system. (and it tastes good).

Rosemary – Which is a good anti-inflammatory.

I’m busy developing teas using these herbs and many more at this time to find an effective blend to relieve pain. But ultimately, I want this to be as convenient to me as taking the prescriptions are, so I also want to create capsules.  I’m also very aware that this might be an ongoing odyssey to find the right fit. Bodies change and needs change, maybe I’ll have to have a daytime version and a nighttime version – that seems realistic.

Today’s not a good day pain wise. I woke up with some pain, then got up and took a shower and by the time I was out the pain was excruciating – and because showers always destroy my equilibrium so it’s generally baths for me – I’m also dizzy. But in the morning, when I need to get upstairs to work, feed the puppies and take them out, there’s not enough time for a bath.

The Mankoski Pain Scale

I found a pain scale that really is the best one I’ve seen, and believe me, I’ve seen tons of them over the last few years.
Today, I’m in bed, trying to work through the pain.
Today, I’m a 7.]]>