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…
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.
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!
A little while ago, I read this post on HuffPost:
(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
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.
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.
Part of my extended absence has been due to a massive internal struggle I’ve been dealing with.
I started this blog, in part, to journal about all the aspects of my illnesses. This includes all of the aspects of my physical symptoms AND my mental symptoms. This journaling is to help me deal with what is going on in my life, and to help anyone else that is struggling not to feel as alone.
Now, where is the struggle? Well, I have found myself holding back and not being completely honest with you. I’ve been leaving things out, under-telling symptoms, playing down physical symptoms, and just not touching on the mental aspect at all.
Why?
The answer to the why is where the struggle comes in.
Oh man, I can hardly believe it… Stuff is over. My body has been on high for the last several weeks and my calendar is suddenly EMPTY. Mom left this morning, and I went to Verizon this afternoon to get the stuff with my replacement phone figured out. But then all I had to do the rest of today was to get my replacement phone setup! Yay!
However, since I’ve been on high for so long, my body doesn’t want to decompress. I have crazy knots everywhere, and I have a crazy intense “forgetting everything” type of feeling. And migraines. Ugh. I had one that was pretty bad when Dan got home today, that hit quickly, and then the Excedrin either wore off after two hours or I got hit by a second one… either way, ugh. Plus, stomach issues. Hopefully, however, after a few more days of actually resting, my body will actually believe me that nothing is urgent and come out of the “emergency” stage.
Tomorrow, I’m going to read! I’m also going to get my allergy shots and drop off my old phone at the post office and have my individual appointment with Joleen. But mostly, I’m going to relax and just read 🙂 It’ll be fantastic!
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?
On a positive note, I no longer have any classes!!!!!
Finding Life's Silver Sun 