“Grieving The Life I Once Had” – from HuffPost

A little while ago, I read this post on HuffPost:

Grieving the Life I Once Had
by Naomi Sakin

(I actually got there from Dysautonomia International‘s Facebook page.)

Facebook is really the only way I get any of my news. The only news source I follow directly is National Geographic, and that’s primarily because I have admired their photography for as long as I can remember. Anyway, that’s off topic.

The article, is heartbreaking. It’s heartbreaking because it’s real. So devastatingly and painfully real. You don’t find out what she has until the end, but it doesn’t matter. I think anyone with a chronic condition can relate, especially one that you weren’t born with, or that you were born with that didn’t get diagnosed or show up until later in life, or one that changed as you grew, or one that is progressive that suddenly throws you curve balls that alter your day-to-day. Really, anyone. Anyone that no longer can do what they used to.

Take caution reading the article. If you are fragile, you will cry. I teared up, but luckily I’m not doing too badly, mentally, right this moment so I didn’t lose it. Yesterday, I would have flat out bawled for hours.

I am kind of proud as to what my unconscious and fingers decided to add to my Facebook share and wanted to share it with you:

The life we once lived gets torn from us in an instant. The life we once lived gets replaced by pain and pills. Still, we are somehow expected to carry on. We adjust, and we move forward.
– Elizabeth Bulfer

Sometimes, we don’t know how we move forward, but we always seem to move forward. That’s why I started this blog: to move forward, to remember to always move forward, to give me a reason to move forward (if only to make one more post), and to remind others to move forward.

Together, we can carry the enormous weight of these illnesses and our grief.

Together, let’s move forward.

Featured Image from the article

Back Pain: Gone and Back Again

So I wrote this post just after 4am last night, on my phone, originally. My phone and WordPress are NOT friends and it deleted it apparently. This happens a lot. Ugh. So I will try to rewrite it now that I’ve noticed.

Overnight, it appeared that my back healed because I woke up on Friday morning feeling almost “normal” again. My back was sore, sure, but it definitely wasn’t anything near the severe back pain I was experiencing on Thursday; I wouldn’t even really call it “bad pain” let alone “severe pain.” I took some Aleve and was careful, but carried on with my day. By Friday evening, I felt pretty much 100% and barely noticed my back at all.

Continue reading

Severe Back Pain Today

Sometime last night, I was woken up by pain in my right SI joint (sacroiliac joint). The pain was intense enough to wake me up, something that doesn’t happen often, but was something I’m familiar with. It was the pain that comes with the joint locking up. Sadly, locked SI joints are common, especially in the right. Once I identified pain, I stretched in an attempt to resolve it, and went back to sleep.


Continue reading

In Need of Spoons…

Does anyone have any extra spoons?



My family is arriving Friday morning and I have a LOT to get done around the house to get ready for my graduation party Saturday before they get here.

Anyone have spoons they don’t need to help me get thru the weekend?

special spoon

On a positive note, I no longer have any classes!!!!!

Atypical Flare Day

Itchy. Everything is itchy. The burning itchy kind of itchy. The under the skin kind of itchy. The normal itchy. EVERYTHING itches!!!!!

It’s been like this for hours now. Why it just now hit me that I’m in the middle of a flare, I don’t know, but it did. Usually, my flares agree more pain involved. This doesn’t have much pain. But I am SO irritated. Everything itches, even my eyeballs. Because of that, everything is driving me bonkers.

A hair fell off my head and touched my arm and I almost burst in to tears. No, I’m not kidding. My phone put “feel” instead of “fell” in that sentence and I felt inexplicable rage.

My internet isn’t working very well, which is why I’m writing this on my phone (I hate using my phone for posting). The lack of functional internet also means i can’t work on my homework right now. Xfinity was being awful and made me uber angry, again, so I had to stop watching TV. My hands are uber stiff so I don’t want to hold a book of any kind right this moment. Dan is at school working on a project for class.

My hands and feet are swollen. I just noticed that. Maybe I’m dehydrated? Maybe it’s the medication I’m on for the sinus infection? Who knows. But it’s not helping.

I just want to cry, but that’ll just give me a headache. Crying is great for the soul sometimes, I just wish my head would agree. Ugh.


Empathy vs Sympathy by Brene Brown

This video is a very short and beautiful way of describing the difference between empathy and sympathy. Empathy is important and how we connect with people. Empathy is what everyone needs, what everyone wants. Learn empathy. Practice empathy. Foster connection. Foster love.

Summary of A Pilot Study Using AVS for Insomnia in Adults and Chronic Pain Patients

Here is my paper. I had to write a summary of the article that I read. At the bottom is the reference, which includes all of the information for the article if you are interested in finding it for yourself.

Summary of A Pilot Study of Audio-Visual Stimulation as a Self-Care Treatment for Insomnia in Adults with Insomnia in Chronic Pain

Chronic pain and sleep disturbances are comorbid conditions, meaning they are often diagnosed in the same patient. It is estimated that one in three Americans suffers from chronic pain, and as many as 88% of those suffering from chronic pain also suffer from some sort of regular sleep disturbance (Tang, Vitiello, Perlis, Mao, & Riegel, 2014); that equates to about 78 million American adults suffering from chronic pain, with about 68 million also suffering from sleep difficulties (Howden & Meyer, 2011). These statistics show a shockingly high level of comorbidity, and a need for a solution. It has also been suggested that the relationship between pain and sleep may be bidirectional, meaning that increased sleep disturbances increases pain levels and increased pain levels increases sleep disturbances. Sleep disturbances have also been linked to other physical and psychiatric problems, which have also been shown to cause chronic pain problems, suggesting that treatment for chronic pain should focus on sleep disturbances.

Continue reading

Soon I’ll Have Research to Share

The paper I’m writing for psych isn’t a traditional research paper. Instead of a research paper, we had to find a short article related to psychology and then summarize it in plain English (I think it’s so we can have more practice in reading and understanding scientific articles). I chose an article that is related to insomnia and chronic pain. Once I get my paper turned in, I’ll share it with you guys because I find it very interesting.

Here’s my paper: Summary of A Pilot Study of Audio-Visual Stimulation as a Self-Care Treatment for Insomnia in Adults with Insomnia in Chronic Pain

FINALLY a Recovery Cocktail

How do you recover from a month of crazy emotional stress, travel stress, chronic illness, and allergy testing?


Zofran, Tramadol, two Benadryl, two Excedrin Extra Strength

I just got home from my allergy testing, and this is the first thing I did. Well, technically the second. This has just been the most ridiculous month, and definitely not in a good way. Grama passed on the 3rd, and now suddenly it’s the 19th. I do not know what exactly happened to the month of April, but I do know it has been a giant ball of stress of all kinds.

Here is why I’ve been a ball of stress:

Burn Out

My house is burning out: both Dan and I are burning out, actually. We’re both pushed pretty far towards our limits and both our burn outs are feeding into each other. It’s not a good situation really, but luckily we have each other and the little strength we each have left is stronger together. Dan is really busy with school, and work, and the stuff around the house that I can’t do, and the home improvement stuff that I can’t do, and taking care of me. I’m busy with school, and the stuff around the house that I can do, and trying to get the stuff done for making money that I want to do, and trying to figure out how not to be in so much pain, and all my doc appointments, and dealing with side effects, and getting over a head cold, and trying to figure out what I can actually do around the house, and trying to make sure I have the spoons I need for the commitments in the coming days.

The burn out is really why I haven’t been on here. I’ve just been trying to survive right now. It’s been harder than it sounds. Hopefully, things will start to equal out soon.