08.09.2019

Aug. 9, 2019 fibromyalgia & Lyme news

1.

Alternative Pain Treatment Directory: Censorship of health information by Google, Facebook, Amazon, government and more

My colleague Cindy Perlin gives a nice overview of the recent online censorship of alternative health topics. Some of my cannabis and CBD content fell victim to Google’s algorithm change a few months ago, effectively killing about one-quarter of my website traffic. So, yes, this is real … it’s not just some conspiracy theory! You can read more about Google’s crackdown on natural health websites here.

2.

Fibromyalgia News Today: Fibromyalgia may be overlooked comorbidity in allergic rhinitis patients, study suggests

I would encourage these researchers to go one step further and ask what can cause symptoms of both rhinitis (aka hay fever) and fibromyalgia. One very obvious answer to me is mold illness. If you suffer from both of these conditions, I would suggest checking out Jill Carnahan’s articles on mold illness. She does a great job of covering the basics.

3.

Counting My Spoons: My experience with ACA subsidized insurance (after two years)

My fibro friend Julie Ryan shares her experience with obtaining health insurance coverage through the Affordable Care Act. I was actually surprised by the rates!

4.

Real Food Rebel: 12 myths I ignored to reverse 20 years of chronic illness

This is an older article from 2016, but it’s a great read and thought-provoking. I don’t agree with everything in her article, but I do follow a lot of it.

5.

Lyme Disease Association: Is there a link between genetics & chronic Lyme?

University of Maryland researchers have found “a significant association with [post-treatment Lyme disease syndrome] and patients with the rs1128503 variant allele TC on the ABCB1 gene.”

And an extra…

Forbes.com: The University of Maryland is launching a graduate degree in cannabis

Looking for a new career path? This program is going to be mostly online with some occasional coursework in Maryland.

Aug. 9, 2019 #fibromyalgia and #Lyme news highlights: How alternative health information is being censored online; researchers find possible link between allergic rhinitis and fibromyalgia; obtaining healthcare coverage through the Affordable Care Act; how genetics may play a role in chronic Lyme and more!

I’m struggling…

You might have noticed I’m still not posting at least twice a week like normal. When I returned to blogging in March after being out of work for nine months due to a cerebrospinal fluid leak, I was so excited to start writing the many articles that had been floating around in my head for all that time.

But the truth is I’m still struggling health-wise, and it’s affecting my ability to work. When the doctors fixed my leak in January, I developed a complication called rebound intracranial hypertension (IH). In a nutshell, my body hasn’t been able to properly regulate the cerebrospinal fluid pressure on my brain, so I am still experiencing daily headaches. I’ve tried a couple of different medications to relieve the headaches, but neither one helped.

The IH is also affecting me cognitively, so an article that used to take a couple of afternoons to write now takes a week or two or even longer.

I just wanted to let you guys know what’s going on. I had held off on sharing this because I kept hoping the headaches and brain fog would stop with time, but they haven’t, and I’m not sure when or if they ever will.

The good news is my Lyme and fibromyalgia symptoms have calmed down quite a bit over the past couple of years with proper treatment, so at least I’m not getting hit with a double whammy most days.

I’ve been thinking about maybe switching to doing more video vs. written blog posts because video doesn’t require as much brain power. What do you think about me doing more video? I’d really like your feedback in the comments.

Big hugs to all of you out there who are struggling, too! Love you guys!

Comments

  1. Deb Dorgan says

    So sorry to hear about your spinal headaches! I had one years ago after a lumbar spinal anesthesia for a surgery. I was bedridden for days afterward with dizziness, severe headaches and nausea until 2 blood patches finally “fixed” it. I can’t imagine going through that for months. Personally, I prefer written info but whatever is easiest I would still follow as you give so much great info. Good luck and gentle hugs.

  2. Hi Donna, so sorry you’re having such a difficult time healthwise. Your writing has been such a brilliant resource, thanks so much. I’ll happily watch videos if you make them. If it’s easier for you then please do it. You have to look after yourself first! All the best, hope you feel better soon 😊

  3. I think you should do whatever is best for you. To answer your question, though, I prefer the written word to videos for s variety of reasons.

  4. Mary Perk says

    I say that whatever works best for you will be what I can listen to or read. Both have their negatives and positives for me, so go with what is easiest for you.

  5. Maureen M. says

    HI Donna, I’m so sorry to hear that your headache condition continues to effect you 🙁
    I pray it will be gone ASAP! I wish for you to do whatever works best for you. I’m absolutely fine with videos…I like watching them when stuck in bed. Keep strong and focused on your health. We are always here rooting for you! Hugs, Maureen M.
    ps I received my Painless and NeuroSoothe lotions this week and am trying them out 🙂

  6. Leicia Raygan says

    Donna,
    Hi. I love your blog. Great information. I am so sorry to read about your recent health struggles. As to wether video is easier than writing a blog, I do not know. However, my boyfriend has Rheumatoid, and has gone to a voice program to do my emails and other writings. He says that is easiest. So that might help you.
    I will pray for you to get better. God bless you.

  7. Love your work however it comes!!

  8. Hi Donna, I can relate so much to you right now. I have fibro, arthritis, IBS, hypothyroidism and a few other health issues and my symptoms and pain have prevented me from doing very much over the last 10 years. I was finally able to write an article for The National Pain Report back in December but haven’t been able to continue since. This was the first really useful thing I felt I had done in the last 10 years. Not being able to continue with it has been very depressing – BUT – like you, I refuse to give up. Anyone with health issues like we have has to have hope or what is the point of living? I thought this was just going to be a minor setback but my pain and brain fog aren’t cooperating. I’ve tried every med and treatment out there and have had some success with opioids and cannabis. By the way – how ridiculous is it that certain sites are censoring things like CBD content! Anyhow, you have developed a loyal following and we will wait as long as it takes for you to feel good enough to be able to do what you love again. The main priority should be you and your health. Without our health we have nothing. If making videos is what you would like to do, I’ll watch them and I know all your loyal followers will too. Whatever you do we will support you. We are pain warriors and we will prevail! Gentle hugs.

  9. Margaret W says

    Donna,
    I’m so sorry the spinal leak is still causing you significant problems. I actually hadn’t noticed that you’re not posting as much (once you resumed), because I thought this newsletter was always once a week. I say that to reassure you that the quality of your work (which is still high) matters more than the quantity. Whatever you can do — in whatever format — is more than enough. We love and appreciate you, and hope your headaches and cognitive issues will resolve with time.

  10. Andrea K. Frankel says

    I cannot process videos longer than about 1 minute. Please continue written blogs! Thanks.

  11. Mark R. Knudson says

    Sorry to hear about your continuing struggles Donna. Thank you for continuing to bring us information and hope for our challenges.
    As far as updates are concerned, whatever works best for you, even if it means taking a break.
    Take care and wishing you well in chasing the headache demon away.
    Aloha.

    • Thank you for posting about fibro and lymne you do a great job but you need to take care of yourself the best way you can if videos work for you that is fine with me maybe you do need to take a break for awhile and concentrate on yourself then you can be better to yourself and to others in your writing so just do what is best for you . I’m sure we will understand

  12. Jack Ligon says

    Hi Donna-

    I would definitely use videos-I’m a voracious reader and much prefer print but I’ve learned that I’m in the minority. I’ve adapted to videos by turning off the volume, turning on closed captions and speeding up the video X2.
    I hope and pray you’ll feel better soon.\

    Jack

    • Lady Mary Ellen says

      As a long time reader and friend, I agree that video is better because I kno I have more coping skills with video. I’m getting more migraines triggered by reading. I can turn my phone over and listen, turn down the light and I always put on captioning. And it’s ok to be seen! Hugs

Speak Your Mind

*


This site uses Akismet to reduce spam. Learn how your comment data is processed.

Wordpress content guard plugin by JaspreetChahal.org