Chronic Pain
Yes, I’m still in pain. I’m frustrated and admittedly depressed by the fact that I still have pain after having the surgery to correct the pain. I don’t know if its new, or if it’s just that its pain that was masked by the stronger pain that is now numb. But, it’s still there.
As you’ll recall from my post on September 7th, I am a casualty of the war on opioids. 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.
We’ve all heard of the opioid crisis here in America. We’ve known that government mandates are forcing doctors to cut back on the opioid prescriptions they write – or face consequences apparently.
We’ve heard that some pharmacies are even limiting the number of tablets/capsules one can take home – even with legitimate prescriptions for a full month.
We all believed these were for the Schedule 2 and up types of narcotics. We were wrong. Even Tylenol #3, a schedule 3 pain medication is being limited.
My pain clinic will no longer write prescriptions for narcotics for my type of pain. They don’t care – no one cares – that the protocols that many of us have been on for years, that are working, and that we are working well within, are now suddenly being changed. We have to suddenly change our medications to something that could potentially damage us, or our quality of life.
Last year about this time I was on two such medications and suffered horrific side effects. I was bedridden for months, and when Michael had to go out-of-town, I had to stay with my sister – so she could watch over me. Did you hear that? The medications I was on made it imperative that I not be left alone. But this is what I’ll be forced to go back to now that the government has stepped in and told my doctor how to treat me.
It’s not fair, and I’m really angry about it. But, there is only one thing I can do, and that is to stop taking the medications. I shouldn’t be forced to, but I’m very tired of being pigeon-holed into the drug addict category and having to justify why I should be on them.
Researching Tea
I’m an herbalist! I can and WILL find an alternative that is better for me and has no harsh side effects. I’ve already started researching and experimenting.
And please, before you start talking to me about using marijuana, just don’t. I don’t want to be rude, but, I’m not about to start using something the federal government considers illegal. I’m not about to lose my 2nd Amendment Rights just for using an illegal substance. It’s a whole argument I’m not going into here, just understand that it’s my choice and this is how I feel. I am currently looking at the CBD oils and salves though.
The first round of testing is underway and showing promising results! Already, after a cup of tea, my pain level is drastically reduced. So, I’m really hoping I’ll be able to find effective pain relief and kiss prescription pain meds goodbye.
Tea Trials
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.
Possibilities…
Yesterday I started on the two new prescriptions for pain relief my doctors (in Pittsburgh, PA) spoke about. The pain medicine infused ointment compounded by the pharmacy there.
Perhaps yesterday wasn’t the day to start them though to give a fair trial. Yesterday started at 3:59am when I woke up nearly screaming from pain and could not get back to sleep. Until later that is, ended up spending the entire day in bed from it. Watching tv, reading, studying, and watching Michael hang new blackout curtains in the bedroom (which are really pretty by the way lol).
The ointments came about 10:30 wth the mail, and when I applied them the first time, I didn’t feel much different. But, I think there was just enough to relax the pain long enough for me to fall asleep again. When I woke up a couple hours later I was still hurting but it was less. I was still so exhausted, I ended up sleeping off and on the rest of the day. I applied them four times yesterday and overall, I think it was better.
One ointment is a magnesium/gabapentin and the other is lidocaine. Other than a slightly sticky feeling left over on the area, they aren’t bad. No odor, and they didn’t cause a stinging feeling. I wished my own pain reducing concoctions had worked but they weren’t strong enough. I really hope they work!
Its my first experience with gabapentin and I wouldn’t have thought that it could be delivered in this method. My pain clinic local to me never suggested it, and when we asked them why not they were defensive. I think its time to try and find another pain clinic that’s local (reasonably so anyway) and see if they can help me more effectively. A doctor shouldn’t be defensive when you ask them questions. I followup with the Pittsburgh clinic in about a month.
Wish me luck!
Gotcha
She wakes at 1:30am and writhes, clutching her abdomen. I think, “Yeah! I did it again!” Gotcha!!
Her good morning cuddle with her hubby was going very well until I interrupted her, causing that cool sound she makes when I visit, and bonus! She’s gritting her teeth again. Yeah! Another score! Gotcha!
She’s feeling positive today… what can I do to change that? Oh wait, I know, I’ll derail her optimism with my special gift. Oh goodie, she’s crying…. Gotcha!!
She’s been trying for hours to find a comfortable position and relax. Nope, that’s not gonna happen! Gotcha!
Her stress level is so high her shoulders are up around her ears. Yeah!!! I’m so good at this!
She has so many things to do – all in an attempt to forget I exist… not that I’ll let that happen! Gotcha!
Hmmm, she thinks she’s going out with friends this evening…. “Not if I can help it!” I think with an evil smile. Time to turn it on! Now she’s taking medicine and trying to get rid of me. Ha! Gotcha!
She may smile at everyone and say “I’m fine, thank you,” but I know the truth. I make her miserable. Gotcha!
She’s had two very painful procedures, an exploratory surgery and more doctor’s visits than she can count and I’m still here. After four years, I know she’s beginning to think I’ll never go away. Yeah!!! Gotcha!
There is nothing better than that special moment when she’s at 9.9 on the scale and nothing is helping. This is where I shine like the star I am. I live for those times when she’s so scared and feels so hopeless… Double Gotcha!
Who am I?
I am Kathy’s chronic pain.