Below is a collection of links that I frequent for my needs that you may find helpful too...
But You Don't Look Sick! - this is an awesome site with stories (like the famous Spoon Theory), really supportive & active message boards, and all sorts of other nifty resources.
UK Addison's Patient Manual is the best resources on adrenal insufficiency, and taught me more than any of my doctors (even the good ones!).
Mind the Gap is an excellent blog about patient & physician communication.
I love the Revised Pain Scale from Hyperbole and a Half. (contains adult language)
Google Health News keeps me informed on most current health matters.
The Medical Journey - Deb puts into words what I've been struggling with for a long time. We trudge this road at first enthusiastic, ready to make ourselves well. Then less so, as we learn how little we can do, until it becomes a struggle to care. Beautifully written.
Moving On - This is a blog written by one of the rare ones: a doctor in extreme chronic pain. This guy doesn't pull punches; raw and real, he truly understands the dark grip of pain.
This is a really good list of 36 Easy things that you can do to make the life of your chronically ill friend a bit better.
Another good list of 50 Ways to Help a Chronically Ill Friend.
Soft-ice Ice Packs made from common household items!
A microwavable/freezable compress, also known as a Rice Sock.
(From Lisa Copen of RestMinistries.com) Do you need a speaking program to navigate your computer? I have had 3 or 4 editions of Dragon Naturally Speaking and this last one is better than ever. (No one told me to post this... LOL... I just know many people have difficulties with their hands and could use this program well.)
Tips & Tricks
Here's a list of items (as example, not endorsement) for shortcuts to self care. Every Spoon counts!
When shampooing in the bath/shower isn't an option, dry shampoos work in a pinch. There are commercial versions and home recipes (for those who are sensitive to ingredients).
Adult Disposable Washcloths
When the bath/show isn't an option, Adult Disposable Washcloths are a lifesaver. There are Hospital Disposable Washcloths for those at greater need, but they also tent to be more expensive (about 600%).
Warming the air from an Oxygen/CPAP machine
Get the longest hose they can allow you to have and place the excess length in a 5-gallon soup pot and fill with hot water from the tap (i.e., not hot enough to melt the plastic hose). The heat from the water will heat the air as it passes through the hose for several hours. This is a great way to help battle cold air up the nose, and fall asleep with less discomfort (sure worked for me!).
Dealing with cleaning up something god-awful smelling
I haven't researched the safety value of this, so buyer beware... However, if you ever have the unfortunate necessity to clean up something and you want to keep from vomiting yourself, grab a dryer sheet and hold that in front of your nose and mouth. The fresh scent will help you through the clean-up.
How to talk to someone who is chronically ill
Knowing what to say at times can be difficult. It's especially difficult if you have absolutely no idea what the other person is going through. It's hard to find the words when you don't know what it feels like. Here's an article with a few ideas: How to talk to someone who is chronically ill
How to get treatment for Medical PTSD
Most counselors have training in PTSD, and you can always ask if they do. Medical PTSD is not much different from combat PTSD. The behaviors and reactions are very similar, even though the triggers are different. It's also very similar to those dealing with rape trauma. So really, anyone who is trained in trauma recovery will be able to help you.
A lot of people like EMDR, and I agree. It's a great trauma recovery tool. It allows us to face a situation and look at it, without being triggered by it. Then we can sort through the feelings, readjust our view, and find a new way to move forward. There is even a particular style of enhanced EMDR out of Seattle that I was able to experience that was amazing. (I will get back to you on the name...). That, in combination with anxiety medications (what I like to call "-head meds") have made a world of difference for me. But just having a counselor to ask questions and bounce ideas off---so we can better handle interactions with doctors---can be enough.
And the neat thing is, counselors aren't necessarily medical professionals. They're a whole different animal with a whole different type of training. A good bedside manner is a prerequisite. In their field, both the patient and the counselor have the right to bow out of the relationship. It's just understood. If head meds are needed, a referral to a prescribing doctor can be made (which sometimes, depending on the office set-up, doesn't even involve seeing the MD).
Other tools include Cognitive Behavioral Therapy, group therapy (great for learning how normal we actually are), and probably a few others I haven't encountered.
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