Simply Stable

Posted by twinklev

It remains difficult to manage life with so many illnesses. It does! I often refer to myself as “stable”. It’s the best term I have to describe “not suicidal.”

Stable is a good thing! Even when the struggle is heavy. Yes, indeed, its a good thing.

Few people can relate to physical pain so intense that you lose your mind. Most can only relate to their own level of severe and thats perfectly okay. Imagine your severe, and have that severity, rarely ever stop, and see if that wouldn’t put a major dent in your entire existence.

The amount of work I’ve put in the last 18 months surely helped, yet didn’t bring any of it to a halt.

I’ve put in this “work” many times before. It’s all work, everyday, and then there’s extra work. Just trying is work. And then you have to “be able to” in the first place.

Pain hurts! It’s not as simple as many believe it should be. It’s not! All these things people think if we did, we’d be fine, is a form of false hope. It can be detrimental to force onto others “if they only did this” it could be all better. But since they won’t do it, or complain about it they must NOT want to get better. That’s not true! Perhaps there’s a few people out there that might apply to, but seriously not accurate for most of us.

Its a nice way to nudge someone into depression or raise their anxiety by guilt shaming them. After all, if they only tried.

How TF you know if they tried or not, or how much they’ve put in? You really don’t.

No wonder so many people feel badly about themselves. Worthless. Not measuring up. That’s not going to help them heal in any kind of way.

I prefer to love and care for people where they are. At all times. I know too deeply what it feels like to be judged, discarded, and thought lowly of.

It took 6 months again for my shoulder and cervical spine to finally ease down. During that time there were several instances that I thought it was near the end of its course. It wasn’t. The music movement therapy I’d been consistently doing at least 3 days a week, and sometimes 5 became less and less. The last time I completed a 3 day week was in early May with 1 day in last week.

My lumbar spine hasn’t slipped in nearly a year. Thank you, Jesus.

My neck and shoulder hadn’t been this bad since Manual Ligament Therapy nearly 6 years ago.

While that pain is wonderfully decreased currently, and has been for 2 months now, my neck is often swollen. Noticeable and embarrassing at times.

CRPS – I get days where my feet look great! I’ve had extreme edema, and discoloration more times than I could count. 1000s. It’s nearing 22 years since the injuries that caused it. There’s also a half dozen other significant problems in that foot alone. The other foot is better, yet has issues, too. Orthotics help when I can tolerate wearing them. Aligning my spine and posture is a major plus. Unfortunately the times when my feet swell, I can’t put them on, there’s no room to even try to force them and push through it.

There’s been times when swelling moderately existed, but not severely and I did wear them anyway. My feet already feel as if they’re being crushed, so all that does is really crush them. I have to learn to back off.

I have my own psychological hangup caused by others. “I must not be trying hard enough, and I must not want to get better”.

I wake each day full body swollen. My face, beyond puffy. It takes an hour or two every morning to be able to move about without that pain. I start moving myself immediately upon waking. The first walk to the kitchen is the toughest, feels horrible, and seems to take forever. Swelling may decrease throughout the day, even my appearance is better, and then the inflammation happens in my sleep it seems, and I wake to it all again, each and every day.

I’m still using Cat’s Claw.

I just had my soberversary 2 days ago. 3 years and 6 months alcohol free and 5 days ago, 4 months tobacco free.

Neither has made much of a difference in any overall pain related quality of life.

Still happy I stopped them tho.

I’m not doing well, nor am I doing badly. I’m managing.

I’m simply stable.

Cat’s Claw | uña de gato

Posted by twinklev

I previously mentioned Cat’s Claw. This is a starting point which may be of interest to you. In regards to my CRPS and other chronic illnesses, I’ve found that Cat’s Claw offers a wide array of benefits.

Some of the information claims cures, I’ll not claim a cure because it’s offensive to some who’ve been deemed and diagnosed incurable by western medicine. To me, incurable implies the medical system either doesn’t know how to cure an illness, or doesn’t have enough information themselves to do so. In some cases, perhaps they just don’t want to. Medicine has become a business more than anything else anymore.

Many of my own conditions are incurable. I’d like to believe the cures are out there and I just haven’t found it yet.

Something I’ve often wondered is that, for example, if my CRPS became curable, I’d still be left with the several secondary illnesses either acquired from it, or those seemingly unrelated, yet affected by it.

Believe me when I say its become my mission to relieve them all.

Uncaria tomentosa is a woody vine found in the tropical jungles of South and Central America. It is known as cat’s claw or uña de gato in Spanish because of its claw-shaped thorns. The plant root bark is used in herbalism for a variety of ailments, and is sold as a dietary supplement. Wikipedia

Some references state it can begin working in as little as a few days, others about a month. Like most herbs, roots, and supplements, a month is reasonable.

I’ve taken it approximately 10 days. Day time burning related to CRPS has lightened. As of yet, night time hasn’t relieved. I was able to get my shoes with orthotics inserted back on yesterday, after swelling had increased again the last couple of weeks. Edema and discoloration has been a major part of CRPS this entire 21 years of having it. It can be random or caused by weight bearing. There are times its much better than other times. My shoes are on and went on with ease. At this point it may be a coincidence.

My take away from all the research and watching videos on Cat’s Claw is that its potential is incredible.

A compilation from my notes include:

Inflammation, Improves RA, Osteoarthritis, dialates blood vessels, repairs cellular damage, repairs dna, repairs chemo therapy induced DNA damage, repairs RNA, protects neurons, tumors, diuretic, intestinal complaints, heals wounds, may fight cancer, immune system support. It may fight and inhibit growth in leukemia, promotes healthy white blood cells, lowers high blood pressure, improves various neurological symptoms, inhibits blood clot formation, increases circulation, calcium channel blocker, relaxes blood vessels, immune modulator, Decreases inflammation in the brain. May assist HIV and AIDS, combats herpes, improves digestive problems such as crohns disease, diverticulitis, gastritis, colitis, hemorrhoids, leaky gut, stomach ulcers, parasites, muscle and joint relief, colds and flu relief, antioxidant, antiviral, anti mutagenic, fights viral infections.

I’m highly interested in its ability to repair cellular, and DNA damage.

Its antibacterial, antifungal and antiviral effects have proven particularly effective in combating persistent infections such as Lyme disease, Candida, Eppstein-Barr (glandular fever), herpes, bladder infections, hepatitis, prostatitis, gastritis and Crohn’s disease.Apr 23, 2018

The Cat’s Claw, a miracle cure from the jungle

https://en.m.wikipedia.org/wiki/Uncaria_tomentosa

https://www.rxlist.com/cats_claw/supplements.htm

https://www.drugs.com/npp/cat-s-claw.html

6 Benefits of Cat’s Claw + Side Effects

https://www.nccih.nih.gov/health/cats-claw

Side effects
Generally well tolerated and considered non toxic. Possible dizziness, diarrhea, nausea.

I haven’t experienced any side effects. Please keep in mind that I’m not taking any pharmaceuticals. I have no idea how it would interact with any. Talk with your doctor or pharmacist before using this.

Caution
May interact with other medications
and immune modulating drugs.

Do not use if pregnant, or nursing. Do not give to children without doctor supervision. Discontinue 2 weeks prior to surgery.

If you have Lupus, MS, Parkinsons, bleeding disorders, talk to your doctor before using.

The brand that I purchased is by NOW and cost effective at about $15.

YouTube References

Looking forward to sharing more about this in the coming months and any noted relief or benefits with other illnesses including, but not limited to, Diverticulosis/Diverticulitis, Crohn’s, Gastritis, Narcolepsy, and Brain Health.

Gohl Method

Posted by twinklev

I’ve referred to MLT dozens of times over the years. MLT is Manual Ligament Therapy.

The therapies and protocols are what I’ve used to maintain my comorbidities.

Now that video demonstrations are available it’s easier for me to recall some of what I learned, yet had also forgotten. What I mean by forgotten is the specifics to certain movements and stretches.

Spinal pain had been creeping up. I’ve been using an inflatable traction device since yesterday. Since having MLT years ago, I’ve only had a few instances of this. When I attended it was at its worse and it had been ongoing for more than a year.

I had been sent to the physical therapy center for traction of my spine and a few other treatments including heat and manipulation. I underwent cervical injections. The second one I had was the day before the Gohl Method/program healing retreat. (Oct 2016)

In fact, I spent my 48th birthday there. The spinal problems had caused cervical radiculopathy. Part of my right hand, fingers, wrist and forearm are partially numb. The treatment restored loss 9f feeling in my third finger. Its the finger I type and text with. I canceled the 3rd injection.

I was seriously scattered yesterday. Too much pain distorts my thought process. I kept changing my mind all day.

I couldn’t concentrate. I watched and rewatched 2 Spanish lessons, and couldn’t retain a single thing.

Background noise was terrorizing me. Hypersensitivity to sound. My anxiety kept rising.

I wanted to reach a 5 day exercise goal. Then wasn’t going to do it. I thought I had other weeks ahead to accomplish that.

I replaced that with Anterior Body Stretch. I could visually focus as I mirrored the video. That helped me complete it.

My mind kept nagging me, I’m not even kidding, to not miss my music movement therapy and achieve 5 out of 5 days that my fit bit would log as actual exercise not only active minutes.

I rewatched all of the Gohl Method presentations and demonstrations.

The little inspirations fit bit give you. You’re a pro! Ha! 10 minutes is hardly that, but hey, at least it sounds supportive. It would be the first time reaching a 5/5 goal. I did!

Today, so far, stress is lessened. There’s no worry to miss song movement today. I just had to reach that goal!

I’ll repeat anterior stretch, and take it easy.

I really like Abdominal Self Massage, and have been doing this one for years. Not to the full extent of the video though. I use my therapy balls more than my hands, I’ve been doing it hands-on for 2 weeks.

I mentioned in a previous blog I wasn’t taking on anything in 2021 other than increased weights. These therapies don’t count as they are already in progress and therefore will simply continue.

The only thing I can think of that caused or contributed to this flare, or re injury is banging my knee 2 weeks ago tomorrow. It’s still bruised and swollen. It looks like I fell and I didn’t. I dinged it in the doorway coming out of the bathroom. My dog was weaving between my legs, and smack!

That hurt like a bish, but then I didn’t think any more of it. I just thought I was sore and tender because CRPS does that anyway. I hadn’t even noticed the depth of bruising and swelling until the 4th day, when I was getting ready to go with my auntie to Thanksgiving eve prayer service.

It occurred to me some before and more so after rewatching these videos that maybe I threw my posture off and as a result my spine as well, which led to my current state.

I’m really not certain. Random flares occur often enough.

It makes sense to me. I’ve been attempting to repair my poor posture over these last several years, too. I’ve fairly well fixed my breathing issues, which is fast slow, even in my sleep and documented in sleep study reports. I don’t panic breathe, anymore. I’ve avoided hyperventilation.

I pray these methods help others as much as they’ve helped me. I have faith they’ll help even more into the future.

For more information-

https://gohlmethod.com/

Feliz viernes

October

Posted by twinklev

I love Springtime! The weather begins to warm and my water therapy begins. Each of my 3 children are born in March. I always look forward to that time of the year.

October is my favorite color. Beautiful shades of earth. I adore autumn as everything starts to fall away in order to begin again.

It’s cleansing.

It’s also my birth month and not too cold as of yet. It smells refreshing to me.

It’s also time to ride. 🧹

I enjoy the sharing of seasonal memes as a distraction to carry me through the winter, especially the funny ones.

Spanish lessons continue at 504 consecutive days of learning.

I’ve watched several Mexican novelas already. (English subtitles)

I’m fairly sure I’ve mentioned that our Grandson’s Ezekiel and Greyson are bilingual as their first words form.

A few weeks ago I was worried about Summer ending and water PT being over until Spring again.

That’s when I began transitioning to indoor therapy.

I keep telling myself it’ll be worth it. I’ve been here before with this mindset, positive, and I wasn’t able to maintain what I worked so hard for due to a combination of the intractable pain and repetitive injuries.

CRPS, symptoms, and that visceral bone pain is always heightened in the wet, rainy, and colder months.

So far I’m doing as well as I can be with the music movement therapy and with orthotics on while doing so.

I’m praying that I avoid any major flares and continue into the upcoming months without gaps in my routine.

A part of me is so very tired and worn from all the try, try again. A piece of me says this will be the last time. My heart says, yes you will, you always try again.

Feliz martes para ti

Pain Distraction

Posted by twinklev

This is an important piece in my toolbox. More than ever. It’s always been of value. For many years, advocacy, writing, and poetry were my main distractions. These allowed me to be of use, contribute to society, and nudge my mind in other directions. Limiting focus on what I felt.

Laying up in my own thoughts certainly didn’t help whether a moderate or severe flare or an acute injury and situation. Over thinking can be brutal.. Physical illness with chronic intractable pain is a vicious cycle of depression and anxiety rotating in and out of an already weakened state.

It seems like I’ve already spent a lifetime trying to manage and adjust these cycles.

While my plate remains full, most of it has been replaced with better options. Like any plate it depends on what it contains.

At this point, I couldn’t add any more to it or it would spilleth over and that’s where taking on too much happens. It’s a crash waiting to happen for me.

My three main distractions have become routine.

1. Pray. For myself and others.

2. Church. I’ve attended, online, each Sunday for 16 months.

3. Spanish Lessons. 52 consecutive weeks. 415 days to be exact.

Each of these are from home. It’s hard for me to take on more. I do wish at times that I could. I’ve learned not to dwell on that.

All of our food is home cooked. That’s a daily do. I’m grateful to my husband for the day’s he either gives me a break or steps in when I’m physically unable to accomplish it. Our dogs also have to be fed, and cared for, and that’s daily of course.

Physically, I do as much as possible early mornings. By 2 p.m. I’m struggling . Dinner is generally ready and served by 3:30 p.m. unless my husband is delayed at work. By 5:00 p.m. I can hardly budge.

Shoutout to my crockpot for always having my back.

And to each of my grandson’s whom I love dearly. De’Mantai, Ezekiel, Zy’Aire, and my newest, Greyson, who’ll be born this month.

Matcha – Benefits

Posted by twinklev

Matcha has become a favorite nearly overnight. It won’t provide direct pain relief, nor is it indicated as such. It is not an analgesic.

As a person who lives with RSD/CRPS, other intractable illnesses, and the various symptoms and co conditions that may result, I hope you find this useful.

One of my other conditions is Narcolepsy with EDS. Excessive Daytime Sleepinesses can also exist in people without Narcolepsy. In addition, Complex mixed apnea. Central and obstructive.

The sleep disorders alone can wreak havoc on quality of living, disrupt plans, and cause delays or cancellations in life as much as chronic illness can. There’s the extra challenge of having both.

I was prescribed Nuvigil for several years. It promotes wakefulness yet is not an amphetamine. I stopped taking it in mid 2018. I do have the remainder on hand for what I might consider an outside emergency and where I would be unsafe to doze or fall asleep in public. Being a fall risk as well, outings are minimal.

Matcha!

Matcha boosts the immune system. This is important for those of us with a compromised system. It’s an antioxidant and can protect our cells against free radicals. It detoxifies by removing toxic substances from the body. Matcha contains vitamin C, selenium, chromium, zinc, magnesium and fiber.

It can be relaxing, provide energy, improve mood and concentration.

It has the potential to lower cholesterol and blood sugar associated with diabetes and heart disease. It’s said to assist in weight loss.

It’s green tea!

It can be used in baking, or added to lattes, coffee, water, and other beverages or food. It has no taste that I can tell.

While tea bags are available, I prefer the powder to adjust my use and options.

Matcha may indirectly ease pain and discomfort by providing a calmer sense of wellbeing and reduced anxiety.

I make no promises there. While it may enlighten my day, it doesn’t make my weight bearing any easier. It does help me achieve my tasks with less stress and fatigue. Added stress as we know heightens physical pain.

I’m not certain of any adverse interactions with prescription or over the counter medications. Please be mindful of this and use caution.

The following is information provided by the web. Search term Matcha Benefits.

Matcha is high in a catechin called EGCG (epigallocatechin gallate), which is believed to have cancer-fighting effects on the body. Studies have linked green tea to a variety of health benefits, like helping to prevent heart disease, type 2 diabetes and cancer, and even encouraging weight loss.

Possible Side Effects.

Although matcha is generally considered safe when consumed in small amounts as a beverage, it’s important not to go overboard. Due to the caffeine content, green tea may trigger certain side effects (such as headache, insomnia, irritability, diarrhea, and heartburn) when consumed in excess.

Happy Tuesday!