Tag Archives: spoonie

Full Body Headache, Or So It Feels…

My entire body feels like it has a migraine. I’m in so much pain today. My back is STILL shot. I thought after Pilates yesterday, my back would feel better, but I can’t seem to get ahead of this. My fibro pain is almost always first prominent in my hips, so I’m pretty sure that is why I’m just stuck in this cycle. The daily migraine also hit REALLY early today, and I was struck down by about 11am, when I woke up at 10am. Ugh. I have been lying on the couch, with the room dark and the TV on VERY quiet just because my ADHD makes me really bored if I’m not doing anything at all. I finally had to call Dan at work because the waves of pain were too much, and then came to the realization I absolutely had to take Tramadol and Excedrin (an hour apart for my poor stomach). I had buttered noodles and Ensure for lunch, and my stomach is still killing me despite Zofran. No idea if it’s the medication or the migraine or the pain or a combination of everything or something completely different. I can barely think and I feel horrendous. I’m so sick of lying on the couch. I’m so sick of headaches.

pills and couch june 2016

Daily pills (AM top hand, PM bottom hand), and my usual place and position of lying on the couch.

Why I Haven’t Been Posting: Migraines & Pain

Today is the first day in a VERY long time that I haven’t had a migraine by this time (5pm). I have been suffering from nearly daily migraines for weeks, and denying it. Denying it with excuses: “I’m on my period, I’ve always gotten them every day of my period week” (pretty much true), “my allergies are just really bad, so it must be a crazy sinus headache” (obviously, I like lying to myself as well as Dan), “I’m tired,” “I have eyestrain,” “I can cope,” etc. However, after my back seized up and my pain went out of control, I couldn’t deny them anymore. I finally called Dr K (the neurologist that had given me the medication that is supposed to be stopping my headaches and controlling my pain) and left a message with his medical assistant. Hopefully, I’ll hear back and either be able to get in with another appointment or be told to raise the dosage and the headaches will stop. I forgot to mention the side effects on the message though, ugh. I didn’t realize that until I was typing this out.

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Stomach Bug?

Apparently, I’m feeling awful because I have gastroenteritis. Or at least, that’s what my GI thinks. Gastroenteritis = the stomach flu. Stupid stomach bug. I don’t have a fever that we’ve noticed, but I’ve been downing pain meds like crazy so it might be suppressed I suppose.

He told me to hold off on my Amitiza for three days, then restart it on the next higher dose (since before the bug I didn’t think it doing anything). If my symptoms don’t come back, then it was just a bug. We shall see. Here’s hoping I survive.

Digestion Shmigestion

Obviously, things have gone kaplooey again. I didn’t think my new medication was doing ANYTHING at all, because I had gone back to “normal” (my normal for 20+ years has been constipation). Yesterday, I suddenly got violently attacked by severe diarrhea. Today, it continues. I have a call in to the GI. Hopefully, he knows what to do.

One of my best friend’s baby showers is on Sunday, so I HAVE to feel at least a little better by then…

Update About “Internal Struggle”

Previous Post: Internal Struggle

My mom decided to unfollow my blog. She wasn’t upset, but she didn’t want me to feel like I needed to hold back. While I’m kind of relieved, because now I can be completely honest without stressing about the tenuous relationship I have with my family… I’m unsure about how communication is going to work regarding my illnesses and such now. Oh well, I guess we’ll see. Maybe now we’ll actually talk.

I do have a post I’m trying to figure out how to structure. It might turn into a series of posts. Recently, I’ve been struggling at coming to terms with my Joint Hypermobility Syndrome (JHS) (potential EDS). Why have I been struggling? Because it’s a condition I was born with and that means I have had it my entire life. Why is that a struggle? Because I didn’t get diagnosed until just recently, even though I’ve had symptoms and very definitive signs my entire life. Yeah. So I’m trying to figure out how to structure the post/series properly and how to make it informative and therapeutic. It’s been a major part of my thinking lately, which is why I haven’t really been posting.

Well, I also haven’t been posting much because I’ve been in a pain and Tramadol induced haze for the past several days due to my back. Stupid back.

Hopefully, things will start to come together soon.

Still Struggling With Pain

I spent today in one of the worst flares i think I’ve ever had. My pain put me into a daze; functioning was almost impossible. It was as if  I  was trying to listen to the radio inside a tunnel. Even my vision was screwed up. When I my first dose of Tramadol for the day, it didn’t seem to work at all. Well, it made me nauseous, but the pain was doing that too. I’ve had a horrid day. The second dose of Tramadol worked a bit, and the vision improved a little.

Hopefully, I can get a little sleep and my Pilates class tomorrow will help instead of hurt. I want to function again!

Back Pain, Still

This pain is trying to kill me.

I do not like taking so much medicine… but I can’t function. I can’t sleep. I can’t think.

I wish I knew what I did. Then again, I honestly don’t think I did anything.

I just want it to stop!!!!

(Back pain post 1, post 2.)

“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.

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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.

493x335_low_back_pain_overview_slideshow

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