I have to second the principles of neural science as it truly is the bible of neuroscience, but if you’re a real beginner I could not recommend neuroscience: exploring the brain more. Used it in neuro 100 first year of college. I’m a senior now and I still use it because of its clear descriptions that don’t involve vocabulary or concepts you may not understand yet.
Edit: typo
I've got a 700-page textbook about essential oil safety and I recommend it to anyone who is thinking about working with them. It doesn't really get into pet safety because lots of essential oils simply haven't been tested on pets - not that they should be. I don't believe in subjecting animals to that. I just assume they're all toxic and keep my animals away from them.
This is a 1 star review left on the book Patients at Risk: The Rise of the Nurse Practitioner and Physician Assistant in Healthcare
https://www.amazon.com/dp/B08M9YJQR3/ref=cm_sw_r_cp_api_zJHUFb1GJ78H0
Patients at risk just went on sale this week Written by the President of PPP – Rebekah Bernard and Niran Al-Agba They also have a Podcast
My experience exactly. Although I left many early as they clearly had no clue what they were doing. Have you tried Muldoney's plan for EDS? https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
Its highly regarded as a PT resource in the EDS community.
Just bought this kindle book yesterday and already done. It is a GREAT read. Patients at Risk: The Rise of the Nurse Practitioner and Physician Assistant in Healthcare https://www.amazon.com/dp/B08M9YJQR3/ref=cm_sw_r_cp_api_tIbTFbMV9CXQB
Thanks! It’s been an experience. I actually shifted my career a bit from a more physically demanding position to a less active one due to ic. (Not a mover, but an archivist and I was moving a lot of boxes, items, collections, etc.) Diet does help-at least at first-you may be able to cheat more as you recover. This is just a stupidly frustrating road block before you get better. It does get better. I just got a new bike after being unable to really ride for years!
It’s very easy to feel hopeless and down on yourself, but try to remember that just because your life has changed doesn’t mean it’s over. Ic has made me more empathetic, helped me help others, and given me new perspectives on life and my own strengths.
Meal prepping and finding a protein shake you can tolerate might help since eating on the road is tough. I still have fast food, but might have a plain burger, plain fries, and a water or a plain grilled chicken sandwich.
I do outdoorsy stuff on weekends, but I definitely have to time it out and give myself downtime. I’m also on medication that helps and do bladder installations at home. Find a urologist who specializes in IC.
Meditation and managing emotions can also help, though that’s easier said than done, as I am learning.
I did PT for a year twice a week. It was a slow process, but it’s an effective one. It helped to start with a consistent practice and learn what I could do at home, which is what I do now. There’s a book called Heal Pelvic Pain that gives exercises you can try at home.
https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561/ref=nodl_
It’s not quite as effective as a specialist I imagine, but it’s something you could try to become comfortable with the process.
Patients at risk just went on sale this week from the heads of PPP They also have a podcast
The best thing I can think of for you to do is get some first aid or emergency medicine training and supplies. Take a class, but also get a good reference so you aren't trying to remember everything under stress. I particularly like the book "Where There Is No Doctor" (don't use amazon, but this book) which is a long time best seller for travellers and aid workers.
Beyond a simple household first aid kit, a small cache of medicine and second tier medical supplies (common antibiotics, electrolyte packets, anxiety meds, T3 with codeine if you can, sutures, blood clotting agent, gauze, splints, kt tape, etc) will help keep your local friends put together and healthy. Having a medical reference book and a small stash of meds at home is no substitute for an emergency room, but being able to help them long enough for professionals to take over will make you invaluable.
I'd also recommend starting a garden as soon as possible, depending on local climate, fall planting is just around the corner. Failing that, buy a little extra in the dry goods and canned goods when you go shopping and slowly build up a reserve of food to help neighbors, friends, and relatives.
Gun wise, I don't think too much about WHAT you bring so much as how well you bring it. Practice with whatever you like, but practice. I hope to god we never see running gunfights through city streets, where an AR or AK would do best, but I do believe that a shotgun or rifle and a handgun of your choice are prudent. Bolt action deer rifles are just as or more deadly than ARs, and again we'll hopefully never be running through the streets with one shooting on the move.
While this is the Socialist Rifle Association, on the Left prepping is not just about you surviving, its about your whole community surviving. Food, medicine, safety, those are what you want to bring to the table.
Ok first there is a great book available as a textbook for PT specific to Eds from a PT with Eds that you can purchase on amazon. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I am currently a part of two research studies on EDS. One in Boston run by Dr Matt Holick whom I urge everyone with EDS to contact and join even if only remotely to contribute to the genetic research portion to identify all the markers for the hEDS folks and aid crispr. The other portion is aiding in finding better palliative treatments so our suffering is less. The other study is a PT specific study run by Plymouth state college by an amazing PT who has his whole heart into finding ways to help us help ourselves.
Don’t take my word for it for sure. Don’t take anybody’s word for that matter and dig as deep into it as you can and try to really understand what is going on and what you can do to help make its impact not so heavy.
If you just gave up and gave in and said to yourself this is the card I was dealt and just take it, what do you honestly think will happen to your body? Muscles will degrade and you will legitimately hang off of your extra loose ligaments. Do you know how I know this 💯 because this is me right now. I finally have gotten to the point where my body cannot take anymore. I have disks in my back degenerating and I slipped a disk mushing dye into my hair. I’m pissed and finally got to the point of I’m going to be wheelchair bound again but this time in a power chair because my arms are garbage point in life. I can come back from this I’m sure at least enough to stay out of the chair for longer. There was a girl with EDS on American ninja people we can heal but not by freaking sitting there and taking it.
Seriously though if you don’t want to deteriorate and be taken by this disease then fight man or don’t be surprised when it’s you stuck in a chair wondering how in the fuck you got there.
Focus on the skills sheets! For the NREMT I highly recommend reading/studying the EMT crash course book https://www.amazon.com/Crash-Course-Online-Practice-Preparation/dp/0738612359, it’s only 12$ and it totally saved me. As well as listening to emt podcasts. Good luck!
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I have seen definite progress every few months.
There is no end date to physical therapy and Ehlers. We have to do exercises forever to not degrade... I know how hard it can be.
Various essential oils etc have been distilled by people for hundreds of years, so there has been some study of it’s effects over time. As common pharmaceutical and cosmetic ingredients, many have had acute and long-term toxicity studies done, so we do have some information on long term effects.
You are correct though, the current high levels of use of essential oils by a part of the population is somewhat unprecedented and it will be interesting to learn more about long term effects.
I wouldn’t be surprised if there were several class action lawsuits in the future due to exposures to high levels of essential oils.
I suspect a safe level of exposure would be the equivalent of the amount present if you took a few clippings of an aromatic plant, flower, or herb from outside and brought them in as a table bouquet once in a while. People have been bringing in greenery and flowers for decoration since the dawn of time, so that level of exposure to plants containing essential oils is probably safe.
Hey fellow Zebra! I also have hEDS, POTS, and ADHD! Plus hemiplegic migraines and I'm autistic. I'm currently in my final year of my MSW program and I'm doing my internship in a primary care setting. Everyone else has given good advice re: accommodations and communicating with your school/agency/supervisor, but I wanted to chime in for EDS specific stuff. This shouldn't be construed as medical advice; these are just my own opinions based on personal experience.
Are you in physical therapy with someone who knows EDS well? My PT has been critical for keeping my symptoms manageable enough to work. He's a manual PT that helps me get my joints back in place, which is great because I usually have about 4-5 subluxations between my twice-a-week appointments. A good PT must be EDS-literate, though, because standard PT techniques (like stretching) will make us worse. If you don't have an EDS expert near you but find a PT who is willing to learn, Kevin Muldowney, who literally wrote the book on EDS, provides one-time consultations where he can draw up a treatment plan you can bring back to your local therapist (although these aren't covered by insurance and can be pricey). If traveling to Rhode Island isn't feasible for you, his book can be used as a guide for you and your physical therapist.
In general, just keeping an eye on your hEDS symptoms and making sure you're getting screening for all possible complications is something you shouldn't neglect. I didn't find out I had a tethered spinal cord until my late 20s, and after that was fixed, working became way more feasible.
My physical therapist recommended this book to me. It’s a comprehensive guide for ehlers danlos patients and their physical therapists. It outlines an exercise program to reduce pain. If you can find a pt who will work through it with you, it’ll provide the education they’ll need. Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_glt_fabc_WM15B8NE6EPRZM6KXSVR
Get him this book instead:
https://www.amazon.com/Patients-Risk-Practitioner-Physician-Healthcare-ebook/dp/B08M9YJQR3
Apparently the paperback is sold out on Amazon but it is still available in the kindle edition and paperback from Barnes and Noble
Patients at risk just went on sale this week from the heads of PPP
Thirding this - it's actually called Principles of Neural Science. It's been called the bible of neuroscience more than once, and its in literally every neuroscience lab I've ever stepped foot in (seriously they seem to self-procreate). It's on amazon and is by far the most comprehensive, solidly biology-based neuro book out there. It's also pretty readable, which is a nice plus!
Get some resources like this essential oil safety book by Robert Tisserand and Rodney young. Make sure it’s the 2018 version as the older version is out of date now.
Aromaweb.com is another good resource when looking for blends.
Dilution% is very important as misuse can lead to allergy and sensitivities among other things. You should probably stay under a 2.5% max for yourself without the guidance of a registered aromatherapist/ before doing a lot of research on dilutions and what the contraindications are for each oil you use. (Which ones can be harmful or need extra caution)
I would stick to using an inhaler or defusing for 15 min at a time before getting into topical use; especially for anything mental or emotional like anxiety.
Welcome to the wonderful world of essential oils! Have fun, be safe, and do your research! Even when taking advise from others.
Definitely get rid of that doctor!
I was having the same issue and no infection, terrible bladder pain and urgency. For me, I had scar tissue on my bladder (outside not inside so not seen on a cystoscopy but found during another surgery). My doctor recommends this book to lots of patients:
Heal Pelvic Pain: The Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence,& I.B.S, and Other Symptoms Without Surgery https://www.amazon.com/dp/0071546561/ref=cm_sw_r_cp_api_i_A7RtFb3RX3ZAD
I can relate to so much of this. While you’re waiting for a diagnosis, maybe this might help? I was working with an amazing physical therapist before Covid, and she recommended this book by Kevin Muldowney that’s basically all exercises.
I'm curious under what circumstances you would be using this information? I'm assuming you live somewhere in the middle of nowhere...
This is the book book used to teach the whole class for getting your EMT cert. Everything we are required to know and more, as EMT's, is in here. That being said, you should really get some actual hands on practice if you ever plan to USE these skills in real life. Learning from a book only takes you so far and you will not be reacting calmly in an emergency situation if you have no practice. Take a CPR class, find some volunteer work at a medical facility, see if you can do a ride along on an ambulance somehow.
http://www.amazon.com/Emergency-Transportation-Injured-Orange-Series/dp/1284032841
Also, know that this information will not cover longer term care and all of it is centered around being able to get the person to a facility which has advanced life support capabilities within a certain amount of time. The basics, which would be performed within the first 10-20 minutes of an injury are very important, but if you are going to be taking care of someone for hours/days, rather than minutes, then you need to learn a great deal more about wound care, medications, and airway maintenance.
Yes, it comes and goes. Sometimes I sleep with a 4% lidocaine patch on my lower back and that helps, too. My PT recommended this book: https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561/ . About half of what it recommends for pelvic pain also happens to be effective when the origin of the pain is OA.
Personally I’d suggest a hard copy, so get it from a local shop or Amazon
This book is a guide written to teach PTs how to treat people with EDS. It’s approved by one of the top EDS experts. It’s basic enough that you should be able to do it yourself. Take the muscle relaxant at night. Yoga involving stretching is bad for EDS. Support is in this group
Don't walk, but run, to buy this book https://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028
The gut microbiome plays a huge role in our health, both physical and mental.
This is a great, cheap option that was amazing when I was studying for the NREMT. It takes all of the content areas of the NREMT and condenses it down into +/- 300 pages. Great for reviewing without spending what some of the other studying apps can cost.
Emt B prep, and get on Amazon and buy this: EMT crash course