Tag: disabled

health check puzzle piece

Home Medicine Course Teaches Skills You Can Use To Heal Yourself

Marjory Wildcraft is famous in the permaculture/gardening/prepper niches for her no-nonsense way of approaching just about everything. She’s put together a Home Medicine video class series I want to share with you. I took the course last year. Even though I’m a nurse practitioner and natural medicine expert, there were still things I learned for the first time and a bunch that I was reminded I already knew but had forgotten.

Many of us with chronic illness rely on doctors to know what is wrong. Unfortunately, this doesn’t always work. If you find yourself in a situation where doctors dismiss your complaints as anxiety or some other psychological cause, you need to take this course.

woman standing next to hoop house
Marjory Wildcraft standing next to the hoop house she used for shade cover at her Texas farm.

 

Our bodies have a wonderful way of healing themselves if we don’t muck it up too bad. I’m not saying someone with chronic pain can think their way out of it, or that MS is not a real illness. What I am saying is that we need to take control of our health. The best way is to listen to your body. The second best way is to take the Home Medicine 101 course.

Here’s a post that Marjory wrote.

My teenage son coughed and spoke in a hoarse voice “Mom, have you got something for my cold?”

I felt a rush of happiness at his question. I know that seems strange – and I was deeply concerned by all the mucus and congestion – but what made me happy was his faith in my remedies.

He knew the medicines I had were ones I had either made myself…something that I pulled from the pantry…or possibly it would be something I had grown in the garden.

Over the years he had seen me heal the various troubles that come up in every family. He didn’t know the specifics himself, but he knew that I had good medicine and there wouldn’t a trace of those chemicals mentioned in such tiny print you can’t even read it on the bottle.

It didn’t used to be this way.

Like a lot of people, I had a fast-paced, high-stress life with an investment company I had created.

herbs, garlic, oil
Many medicines have ingredients found in the kitchen

When any of us got sick – and it seemed to happen often – my husband, David, or I simply ran to the nearest drugstore, picked up two or three of the various brands of syrup or capsules, and hoped for the best.

We didn’t really know any better.

My son was a small toddler when I first decided to become my family’s primary caregiver. I’ll never forget the day I was on the phone with an attorney – in a fight with a shoddy building contractor – and I saw my son crawling around and playing with his toys on the floor of our home office.

I realized that if I didn’t start changing how I lived I would miss all the joys of really being with my kids. Here I was on the phone with a lawyer, and there was my son playing without me. I would miss everything that I had signed up for when I became a parent.

Including taking care of them when they were sick

Changing my life took many steps. I wound down my financial services company and left Austin, Texas for the small rural community of Red Rock. David and I began cultivating the land and growing our own food. Over time, I became a happier, healthier individual. The good food and the daily exercise made me feel young again.

But even before that, one of the first, simple steps I took toward escaping the clutches of the system was to learn about home medicine and quit depending on pharmacy drugs.

health check puzzle piece
Using home medicine to treat yourself is best.

Fortunately, I had an excellent herbalist teacher who guided me through all the most common ailments for a family; fevers, coughs, colds, bites, stings, wounds, stomach aches, and more. She showed me how to take care of my family with simple materials and techniques; most of which I already had on hand. Through the years I’ve used all I’ve learned and kept my family healthy and happy. 

And now my grown son comes to me when he needs help.These days my family is astonishingly healthy, and this cold is a bit of a rarity. But I am so grateful that his first thoughts are to ask his family for help – and not some big pharmaceutical company.

I believe that 90% of a family’s medical needs can be taken care of at home with herbal remedies. These techniques have been used and handed down for generations because they are effective.

The Home Medicine 101 Certification is an e-course that teaches natural first aid remedies for common afflictions.

Bonuses!

✔  Live Q&A Webinar with Herbal Medicine Master Educator, Dr. Patrick Jones.February 28th, at 8pm CST

✔  Edible Flowers: Their Culinary and Medicinal Uses by Kami McBride (a digital video)

✔  Apocalypse Apothecary,by Dr. Patrick Jones (a digital video)

Here’s a link to a site that will explain all that is waiting for you in the videos.

 

 

Serenity For Spoonies #1

I was indulging myself at Unsplash.com this morning, looking at all the gorgeous landscapes, seascapes and cloudscapes their photographers have uploaded. Suddenly, an idea hit me. Why not share gorgeous photographs every week or so? Surely I’m not the only chronically ill person who needs the brief respite of looking at calming photographs.

Don’t know about you, but looking at a beautiful sunset or other great photos helps me relax. I need things to remind me to relax. Even as I type this I did a quick body scan and found tension in shoulders, neck, jar, small of back and gluts. ARRRRGH!! I should be relaxing!

So here is my first post of photos for spoonies. Who or what are spoonies, you ask. The name comes from a blog written several years ago. You can read about it here, on HuffPost, if you don’t already know.

Birds in flight
Birds in flight by Barth Bailey
waterfall
Waterfall by Blake Cheek
sunset
Sunset by Christian Holzinger

I hope you like this brief respite from pain, anxiety and generally feeling awful. Let me know in the comments if there are particular types of photos–cats?–you’d like to see.

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Prestigious Study Finds Proof Of Chronic Lyme Disease

At long last, researchers have confirmed the presence of Lyme disease, an infection with Borrelia burgdorferi, following the recommended antibiotic treatment. Johns Hopkins University reported that chronic Lyme disease is a “real” disorder.

The study involved 61 patients who completed the recommended antibiotic course and continued to report symptoms of joint pain, fatigue, cognitive deficits, insomnia, and depression despite largely normal physical exams and blood testing. People with this holdover infection commonly call it chronic Lyme. Researchers call this collection (called constellation in medical speak) “post-treatment Lyme disease syndrome” or PTLDS.

Unfortunately, the study did not address what is perhaps one of the most controversial aspects of chronic Lyme–whether it’s caused by lingering infection and is treatable with additional courses of antibiotics.

tired woman on couch
Lyme Disease is growing in numbers and locations.

Published in the December issue of in Frontiers of Medicine, these findings hopefully will spur further investigation into the cause of the persistent symptoms. Lyme disease rates have climbed steadily since the mid-1970s when it was initially recognized in Lyme, Connecticut. As the disease prevalence and incidence (how widespread and the number) have grown in the following decades, so have reports of what people with it call chronic Lyme.

Medical experts have questioned the existence of a persistent B. burgdorferi infection because there is no direct evidence of the bacteria’s ongoing infection in blood or tissue samples. To help distinguish persistent infection, researchers first studied people with PTLDS, defined by the Infectious Diseases Society of America as involving significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties arising within six months after completion of antibiotic therapy for physician-diagnosed Lyme disease and lasting at least six additional months.

Study Parameters Were Rigorous

Researchers gathered prior medical records with evidence of Lyme disease and excluded all those who have conditions that may mimic those of PTLDS–like ME/CFS or fibromyalgia. They ended up recruiting 61 people who were either self- or provider-referred to the Lyme Disease Clinical Research Center at Johns Hopkins and met study criteria.

Individuals studied were almost evenly split between males and females, and ranged in age between 18 and 82. Healthy controls (n=24) were also split evenly between sexes and about the same ages as the study group but had no clinical history of Lyme disease symptoms and no antibodies to B. burgdorferi that would indicate past or current infection.

A comprehensive battery of tests and exams were performed on everyone. Study participants also completed standardized questionnaires to measure the severity of fatigue, pain, sleep disturbance and depression, as well as their quality of life. 

Few clinically significant differences in blood tests or physical exams were found in comparing the control group with the PTLDS patients. The study did find, however, that some people with PTLDS had a diminished vibratory sensation–a marker for neurological involvement seen in other studies of Lyme disease.

scatter graph
Participants with post-treatment Lyme disease syndrome (PTLDS) were compared to controls on the following: (A) Fatigue Severity Scale, (B) the Short-Form McGill Pain Index, (C) Pittsburgh Sleep Quality Index, (D) the Beck Depression Inventory-II, and the SF-36 (E) Physical and (F) Mental norm-based scores. The mean and 1 SD are shown by the solid lines. Clinically relevant cutoffs for each measure are shown by the dotted line.

There were significant differences in the results from the questionnaires meant to measure subjective experience. Approximately 50 percent of the PTLDS patients reported severe fatigue, 28 percent reported severe pain, about 23 percent said they had severe cognitive issues and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the severe range.

The researchers found 19 symptoms that are not in the standard PTLDS criteria for diagnosis that were reported to be more severe among PTLDS patients than in controls. These symptoms included severe sleep difficulty (32%), severe neck pain (8%), severe numbness or tingling in hands or feet (10%), severe irritability (8%), severe low back pain (3%) and severe headache (17%). These symptoms reflect the significantly higher scores for depression and correspondingly lower scores on a questionnaire used to measure health-related quality of life, the SF-36.

No Clear Biomarkers Were Found

“Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,” says study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”Even with no objective laboratory or exam markers, Bechtold believes the results of this study suggest that PTLDS can be diagnosed through careful and thorough examination of symptoms. Finding a way to accurately identify people with PTLDS will improve diagnosis and care, as well as leading to future therapies. But as we have seen with ME/CFS, without objective laboratory or physical exam markers, mainstream healthcare providers likely are not going to diagnose it. The Johns Hopkins researchers are currently analyzing test results and blood to search for biomarkers that were not examined in the initial study.

The Centers for Disease Control and Prevention (CDC) estimate 300,000 people are diagnosed with Lyme disease each year. Of those diagnosed early and treated following infectious disease recommendations, between five and 30 percent go on to experience PTLDS. Factors such as delayed diagnosis and inappropriate antibiotics and steroids (like Prednisone) given before recommended treatment occurred in over half the PTLDS patients in this study. The Johns Hopkins researchers said this could account for the prevalence of chronic Lyme.

You may also be interested in this article.

http://aswellasicanbe.com/chronic-illness/fight-chronic-illness-autoimmune-diseases-diet/

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Blog Feature: Pretty Sick Supply

Although it’s not even a year old yet, the disabled women behind this online store are making a difference in the lives of people with chronic illness. Kristie Denam and SarahCate Philipson have never been in the same room together, yet between them, they launched and run a store that offers medical supplies that are both fun and functional. Kristie is the more outgoing half of the partnership and deals with things like this interview, while SarahCate does most of the computer work.

Kristie Denam
Kristie

These entrepreneurs met virtually on Tumblr about five years ago through mutual friends. They started following each other, sharing the ups and downs of life with illness. In May 2017 SarahCate was looking for a pill container that could hold all the medications she needs for a day away from home and looked good. She had a hard time finding a balance between big enough and attractive.

SarahCate Philipson
SarahCate

Frustrated by not finding what she wanted, she posted on Tumblr that if she had enough capital she would start her own store to sell attractive medical supplies.

That post, born out of frustration, was the beginning of something great. Kristie wrote SarahCate back saying there was no need for large amounts of capital invested in products–it could all be done online. They hashed things out long distance, starting with a Facebook page that quickly grew into the current site which “opened” July 1, 2017. Since then the site has seen more than 6,000 unique visitors from 59 countries and 20,000+ page hits.

The shop contains, as of this writing, 18 different categories and more than 320 different vendors. The pair welcomes suggestions and recommendations from shoppers and people who do not focus specifically on medical supplies but may have a line or several lines that are a good fit. For example, a leather goods website with an extensive line of different eyepatch styles, sizes, and colors.

So far, marketing is limited to strategically placed Facebook ads and being active on social media. Kristie and SarahCate were active on Tumblr, Instagram, and Facebook disabled communities for years before starting the store. They define their shoppers as friends of people who are chronically ill, caregivers, people who themselves have a chronic illness.  

A big project, with an Indie GoGo campaign to help pay for it, is a professional marketing campaign with rack cards for medical offices and clinics. “We will print a good run of rack cards and ship them–reaching out to as many people in as many places as we can,” Kristie told me.

Rack Card
Rack cards awaiting funding before printing and shipping to medical offices.

The pair has many plans for 2018.

The original plan was to find a way to monetize the site. Six months into it, and many discussions later, the focus changed to being a source of help for the chronic illness community and becoming a registered non-profit organization.

Kristie and SarahCate have plans to add even more resources to the site—not just shops to find beautiful gear and equipment, but also resources for finding prescription assistance, a glossary to help friends and family involved in the community better understand common illness language, like spoons, links to online therapy, and smartphone apps for medication and symptom tracking. The first project is finding and reviewing apps. Kristie tells me that it will “go live” very soon.

Although they have never seen each other person, that will change later this year when Kristie pulls up stakes and moves from North Carolina to Texas where she will move in with SarahCate. “It’s something that will help both of us,” Kristie said.


Why my Health Comes First This Christmas–by Vikki Patis

Vikki blogs on The Mighty, a wonderful site where people with chronic conditions can share their experiences. Here is her story about staying well in the holiday season.

 I love Christmas. I’m not religious at all and rather prefer the term “Yule” to Christmas, but I do love the festive season. I love the tradition of bringing the outside in; during autumn, we string up autumnal garlands and fairy lights and bring out little wooden animal ornaments. Our house transitions from summer to winter in stages, until we finally put up the tree. I love the food and the warmth, making plans and spending time with people. However, this time of year is also incredibly busy, which can be difficult when you live with a chronic illness.
Fibromyalgia is, in a nutshell, categorized by chronic pain and fatigue. It has been almost 18 months since I was diagnosed, and the treatment plan has been going well, but hectic periods like this remind me that I have to listen to my body, and make compromises.
From now until the new year, every weekend is booked up with something. Lunch with family, dinner with friends. Even getting my nails or lashes done requires consideration about my schedule, and what I feel I can cope with.
My birthday is a week before Christmas. I don’t usually do much for it since it’s hard to get people together during this period, but this year, some friends are coming up from Cornwall to spend the weekend with us.

I’m not saying I don’t enjoy all of these things, but it can be draining. When I’ve had a full week at work, I collapse on Friday evenings, usually in bed by 8 o’clock. Most weekdays I’m in bed by 9 or 10 at the latest, determined to get a full eight hours sleep, ready for the next day at work.Sleep Computer Key Showing Insomnia Or Sleeping Disorders Online

My medication makes me drowsy. In fact, it can exacerbate some symptoms of fibromyalgia, leaving me with no option but to go to bed. This is another thing I have to consider when planning events – can I take my medication at my usual time, or should I wait until later, to ensure I can still function during the event?
I think a lot of people who don’t live with a chronic illness can find all of this difficult to understand. Everyone gets tired, but chronic fatigue is a whole different story. Some people don’t always give me the benefit of the doubt, preferring to get annoyed and take it personally when I cancel plans. This can put a strain on relationships, and leave me even less inclined to expend my limited energy on spending time with them.
Living with a chronic illness can feel like a vicious circle, and although I can understand why people might get irritated when I cancel plans, what they have to understand is that it isn’t always my choice. My immunity is low, so I get ill easily, and this time of year is the perfect bug-catching season. And if I’m in too much pain or too tired from a full week, I cannot – and will not – force myself to make a lunch date to spare your feelings. My health will always come first.
For this reason, Christmas day is a quiet affair in our house. Nobody comes around, and we don’t go out. It’s just us and our cats, no pressure, just relaxation. We always make an effort to see other people during the festive season, but we spend Christmas day alone, recharging, enjoying our little family and our peaceful home. I learned a long time ago that I have to be firm when it comes to my health, whether that’s physical or mental, and sometimes you have to put yourself first.
For many, holidays like this are full of stress and drama. We force ourselves to be pleasant to family members we don’t like, we get ourselves into debt trying to buy everyone a present, and we try so hard to live up to the expectations of others. We forget about ourselves, what we need, and what makes us happy. I decided a few years ago that my favorite holiday would be spent the way I want to spend it. I love seeing distant friends, getting together around a table and catching up. I enjoy spending time with family, and going out for walks, enjoying the lights and decorations.
This year, we’ve decided that we don’t want presents. We’re saving to buy a house, so close friends and family are welcome to contribute to that, but we’d rather people saved their money and joined us for a drink or a meal, and spend time rather than money. It’s easy for me to buy a bunch of rubbish on Amazon, get them to gift wrap it and ship it straight to them. It takes money, but not effort, and I’m more interested in the latter. “It’s the thought that counts,” is our motto this year. So I think we should all take a moment, whether we live with a chronic illness or not, and appreciate the time people give us during this holiday season because sometimes, it can be the greatest gift they can give.

29 “Habits” of people with invisible illness by Paige Wyant

Paige is a staff member of The Mighty, a wonderful, caring digital health community created to empower and connect people facing health challenges, chronic illness and disabilities. This article was originally published on www.themighty.com last August and reprinted here with permission. So here’s Paige and the Mighty community. I hope you enjoy reading and identifying with it as much as I did.

Unless you’ve experienced it yourself, it can be nearly impossible to understand what someone with a chronic, invisible illness goes through on a daily basis. Not only can the physical symptoms be painful and exhausting, but they can take a toll on your mental and emotional health as well. Guilt, anger, depression and isolation all too often accompany fighting a daily battle not many others can “see.”

In response to the physical and emotional aspects of living with an invisible illness, many people tend to develop certain “habits” or behaviors that help them manage their condition and its effects. We asked our Mighty community to share the “habits” they’ve developed – good or bad – from living with invisible illness. Maybe some of the following will sound familiar to you, too. Let us know how you cope with illness in the comments below.

Here’s what the community shared with us:

1. “I over-explain when asked about my health, and consequently my weight. I also avoid social situations, out of sheer exhaustion, preferring online socializing instead.”

2. “I always look for a chair when I’m out, as standing up for too long exhausts me. I carry water with me everywhere, as I get dehydrated easily.”

3. “Saying ‘no’ to almost everything. It’s much easier to change to a ‘yes’ later than having to backpedal to a ‘no’ later. This was a hard thing to learn because I want to do all sorts of things, but I recognize I am limited by my illnesses.”

4. “Not exercising – ever. Even though I know it would help me, I’m too busy ‘saving up my spoons‘ to consider throwing them away at the gym or even on a walk around the block.”

5. “I have a terrible habit of not finishing tasks. I get halfway done and I stop to take a break with the intention of going back and I just never do. It really annoys my husband.”

6. “I live with music constantly playing through an earphone. By keeping the music playing it helps me filter other sounds and feelings. It stops over-stimulation. It lets me feel calmer in situations that cause me stress above my pain level.”

7. “Each morning before I get out of bed, I lay there taking stock of my physical aches and pains. Reach for my topical pain relief and rub it in. A few stretches and then I get up (usually limping) and start my day.”

8. “I constantly apologize even if I haven’t done anything. I guess part of me hopes if I apologize enough, it will make up for my not being able to do as much as someone else my age.”

9. “I journal everything from what I ate at what time to when I started getting a headache then when it got unbearable and if I left the house and for how long so I can look back and see if there are patterns that caused flare-ups and keep track of what treatments have caused side effects and which ones have helped.”

10. “I avoid scheduling and going to regular self-maintenance appointments such as the dentist and the eye doctor because I’m so overwhelmed with all of my other health and medical stuff going on.”

11. “I smile a lot. I once got hit in the face with a soccer ball during practice, and I kept smiling with tears running down my face to let everyone know I was OK. I would rather [struggle] in silence than for someone to worry about me so I developed a great smile to distract and deceive them. My eyes give it away though. I can’t always hide the exhaustion in my eyes.”

12. “Stashing medicine (and usually snacks) everywhere I might need it. There’s even a bottle of ibuprofen stuffed between the cushions of my couch.”

13. “Multitasking – my chronic illness drains my energy, so when I have a flare-up or a bad day, I’ve learned to do as many things as I can to make my bad days a little easier.”

14. “I don’t eat dinner. If I eat too late in the day, then I don’t sleep well with the pain. I have battled severe Crohn’s disease most of my life. Every meal is carefully considered and every meal is a potential pain bomb.”

15. “I pop my neck, back, knees, elbows, fingers constantly, because it helps ease the pain.”

16. “I make excuses as to why I can’t stick with plans or go to functions when I’m not feeling well instead of just telling them the truth, that I’m having a bad day, because I don’t want to become ‘that’ conversation.”

17. “There are little things, like carrying my phone and water bottle literally everywhere with me. There are bigger things, like habitually secluding myself when my anxiety and self-disdain start to take over my mind, and often it will spiral and worsen because I feel too scared and ashamed of myself to reach out for help.”

18. “My first reaction to a vacation or upcoming trip is to think of every possible way my chronic illness could ruin it (sometimes it does), but I know the self-fulfilling prophecy doesn’t help.”

19. “Allowing my independence to become vulnerable and letting my husband care for me, like helping bathe me in the shower because my skin hurts just with the water, my body hurts to stand in the shower and I am so very fatigued, I do not have the energy to stand up. It is quite humbling, but he shows me every day he is there for me whatever the struggle may be.”

20. “I seclude myself. I keep a lot of my emotions to myself and don’t really partake in much [out of] the fear of causing a flare.”

21. “Due to brain fog or fatigue, I second-guess myself often. Was that right? Did I say that right? Did I say the right things? I used to be so quick on my feet when it came to a conversation and now I feel like I’m always two steps behind. Because of this, I try to be more aware and listen more before I speak. I try harder to be more thoughtful and less quick to judge something.”

22. “Having to overshare about my condition to have it taken seriously. I have endometriosis which causes debilitating abdominal pain and cysts, but unless I go in depth about my condition most people will just assume I have period cramps.”

23. “I apologize constantly, often for things I know aren’t my fault and I know I can’t control.”

24. “It’s becoming easier to say ‘no’ when I simply don’t have the energy to attend a dinner, do a task, etc. When I was first diagnosed with fibromyalgia, I thought I could just push through the pain and fatigue and not let anyone know how poorly I felt. This was dishonest not only to others but to myself. I’ve discovered how crucial self-care is, whether that means a nap if I need one, taking daily supplements and vitamins or politely declining an invitation to dinner. On the flip side, I take advantage of those days when I feel better but keep in mind not to overdo it or I will pay for it later.”

25. “Not cooking at the end of the day because I just hurt too bad, even though we can’t afford to eat out. I eat so much pizza it is ridiculous because that’s all that delivers.”

26. “When I’m out at a social gathering, I flit from person to person and group to group. This has given me a social butterfly persona. In truth, if I stop moving or sit, I may be unable to get back up or even have to go home. My muscles tighten up and I can’t move properly. Once I sit down, I’m finished.”

27. “Attitude checks. I will allow myself a pity party when it’s deserved, but only for a short time, then it’s time to check my attitude because it is only by way of ‘one step in front of the other’ will I get to where I want and need to be. I have to be as positive as I can not only for myself but also my family. A good outlook is how I make it through each day.”

28. “Defending everything I do. It’s a terrible thing to do. If I’m walking with my cane, I defend it. If I park in [disability] parking, I defend it. If I sleep during the day and stay up at night, I defend it. It’s a habit I want to break, but I’m too afraid to.”

29. “Seeing the value in every single day. Cherishing every opportunity that comes my way. Being motivated to do so much because I know I could lose more function anytime. Not seeing people as they appear… respecting that anybody could be going through a challenge, so showing respect and kindness to everyone, even if they aren’t kind to me. Recognizing it may just be a bad day or something unknown they are battling.”