This weekend I’m having a rough time with my “new” body. I’m really missing being able to everything and not die. My fatigue is killing me and I feel physically beat up. I had a lot of fun, but I feel physically awful. Emotionally, the physical stuff is killing me. Ugh. This is just my life now, but I don’t like it.
Tag Archives: chronic illnesses
Time for a Colonoscopy
As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.
The Personal Hell That Is My IBS
Unfortunately, my gastroenterologist is now starting to suspect that my IBS may actually be something more than IBS. I have been dealing with my severe IBS-C for more than 20 years, so this is both not surprising and very frustrating. (Yes, I am only 26. I literally cannot recall a time in my life that I have not been constipated unless I was horribly ill and afflicted with diarrhea instead.) If I was told to name one singular illness that causes me the most negative impact on a daily basis, and that I have to most carefully plan my life around, I would choose my IBS. Yes, above the POTS that makes me so dizzy I can’t think straight, above the fibro that can make a gentle breeze feel like I’m being sand blasted, above the allergies that make my eyes feel like they’re full of sand, and above the asthma that can make me feel like I’m trying to run a marathon on top of Mt. Everest. My IBS literally runs my life and it is relentless.
(Disclaimer: This post is going to talk about poop, just in case you hadn’t figured that one out; you might not want to be eating.)
What is IBS? Continue reading
Potential Silent Reflux
The last several weeks, I’ve been absolutely miserable with allergy symptoms: crazy amounts of phlegm in my nose/sinuses, crazy amounts of post-nasal drip, even more intense nausea than normal (probably from swallowing all the phlegm), extremely itchy skin, itchy eyes, itchy ears, itchy nose, etc. It’s been extremely painful actually.
So why all the symptoms? I just assumed it’s because EVERYTHING is blooming. There is so much cotton blowing around (from cottonwood trees) that it looks like there was a giant pillow fight somewhere; the cars have been yellow for weeks thanks to the amount of pollen in the air.
Genetic Testing
I have decided to do genetic testing for Ehler-Danlos Syndrome, even though I know that EDS Type 3 (Hypermobility Type) doesn’t have a genetic marker. However, when I look at the list of typical symptoms for classic EDS, I have a lot of those too, so I want to be sure I don’t have that one. I do fit EDS Hypermobility Type far better, but I want to know for sure.
So I called my rheumatologist, who had mentioned giving me a referral to a geneticist if I wanted to pursue testing. He sent a referral over to the geneticist and when I got the phone call, I find out they are the ONLY adult geneticist in the entire state of Colorado! Because of that, the wait to get in is obscene. I am on the calendar and now I’m on the wait list, just in case an opening appears.
My appointment?
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.
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.
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.
Finding Life's Silver Sun 