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.]]>

Back Again

Wow, I have been away a long time! My last post was last year… Guess that’s what happens when you’re depressed and in pain. You just do what you have to do to get by and drop out from the world.

Good news though! I finally found the right series of doctors who referred me to the right doctors who referred me to the right surgeon who knew what it was that was slowly killing my life. YEAH!!!  It is called Acute Cutaneous Nerve Entrapment Syndrome (ACNES) and in addition to being horrible and miserable and every bad adjective you can think of, it’s also rather rare – which is why it was so hard to do anything but feed narcotics to it.

I had surgery on 5/23 in Johns Hopkins, and my surgeon found that my nerve bundle was adhered to the abdominal wall and mired in scar tissue. No wonder it was so painful!  My surgeon made me feel so peaceful the very first time I met him. Just a wave of hope, peace and positive emotion swept through me as soon as I shook his hand. I’m starting to feel better from the surgery – even with a 6+ inch scar in my abdomen! So far, the chronic pain hasn’t come back although I do feel kind of burning/numbness where I thought I’d only feel numbness. I think (pray) that will pass.

So, I’m starting to come out of the darkness. My despair is lifting and I’m so grateful to God for sending me in the right directions and not letting me give up.

Summer's over and I missed it…

Summer’s over and I missed it… But, there is reason to hope! Because of pain, vertigo, trying new medications, having the Meniere’s disease flare back up and being mostly bedridden, and because I’m too dizzy to do the stairs to my office, and too unstable to get out to do photo excursions or day trips, my summer was taken. The latest new medication is for nerve pain. Its to target the pain from the nerve trapped in my abdominal wall that’s causing all my pain. And its brutal. The side effects I mean. They are awful. But, I’m giving the medicine a few more months to get used to the side effects. The medicine is WORKING!! The pain is lessening!!! Its amazing! I’d get up and do stuff if I was sure I wouldn’t pass out or fall over from vertigo LOL So, between all these changes, I’ve missed the entire summer. I’ve hardly taken a single picture and I think I’ve been on the motorcycle three times. Oh yeah, and my kitchen is still looks like a bomb went off in it… and won’t be finished until pretty much the end of October…  Yup, feeling pretty bummed.    ]]>