Today was my follow-up appointment with my gastroenterologist, and it was an extremely productive appointment! My GI doc is my favorite doctor, by quite a lot. They’re the most awkward subject matter, but they’re always productive and my doc refuses to give up on me. It’s a very refreshing change from how most doctors treat my cases.
Anyway, the follow-up was in regards to my HIDA scan. Continue reading
I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
I am not a doctor! This post is not intended as medical advice. This post is for information purposes only. Before beginning any new medical routine, always consult with your doctor and/or pharmacist. By continuing, you release me (Elizabeth Bulfer) from any and all liability.
Why am I reviewing Visbiome high potency probiotics? Well, I’ve been struggling with severe IBS-C (irritable bowel syndrome, constipation prominent) for over 20 years. I’m only 26 years old. My IBS-C problems started very shortly after I started eating solid foods. Apparently, as a toddler, I used to scream and cry in the corner to try to avoid using the restroom. I first got an IBS diagnosis when I was in college, about 2010, but there hadn’t been any other testing done so I actually ignored that diagnosis. Then, just recently, I got diagnosed with IBS-C again. This time, however, I really trusted the doctor and we have done extensive testing for all sorts of other illnesses (and ruled them out). After listening to my history of “bathroom issues,” he concluded that I have definitely been living with severe IBS-C my entire life. You can read a more detailed account in my post: “The Personal Hell That Is My IBS” (warning, it’s quite detailed/graphic and emotional). I’ve only just started to get some semblance of control over my IBS-C thanks to the use of high potency probiotics and an incredible gastroenterologist. Continue reading
Over the last several weeks, I have been dealing with the first massive complication from my joint hypermobility syndrome (JHS) that I’ve ever had… At least, that’s what we think it is as of right now. If you’ve been following me on Instagram, then you know what’s been going on. If not, let me fill you in now:
I’ve had several vertebrae in my back dislocating. Yes, several. My pelvis has also been trying to dislocate in several places, and my SI joints have been severely dysfunctional (dislocating and getting jammed). I also subluxed – partially dislocate, but it pops back into place by itself – my left hip the other day. Obviously, I’ve been in pretty severe pain for a few weeks.
Source: Yarra Osteopathy
I’ve concluded I need a reusable respirator mask that I’ll wear more often.
The allergist that had been dealing with me (I’ve stopped seeing him for various reasons) told me to get an N95 mask to wear whenever I’m around airborne allergens – like when I’m cleaning, gardening, etc. He wasn’t entirely clear how often I was supposed to be wearing it, but it’s supposed to help reduce my permanent rhinitis and my eosinophilic esophagitis (EoE) symptoms.
My recent throat infection horribly flared up my EoE and made me realize I need something to reduce infections and filter allergens… on a regular basis. There was also a wildfire less than ten miles from my house, at the tale end of my infection, and it really brought the point home. My EoE is still completely flared up.
My stomach issues have been slowly getting worse and it’s been very disheartening. The delayed gastric emptying has hit ridiculous levels, and the pain and nausea can be incapacitating after I eat.
The absolute worst episode was the weekend my mother-in-law was in town… Of course, when people are in town, we try our best to not let my health mess with our plans. Becky, my MIL, was here from Friday night until midday Sunday. Continue reading
As I’m sure you all know, I have a Zazzle store to sell my photography and other things! I also have a wide variety of chronic illness awareness products available for sale, including DYSAUTONOMIA PRODUCTS!!!
I know Dysautonomia Awareness Month is technically coming to a close soon, but we need to spread awareness all year long! I have a great selection of products in my store including:
What other products would you like to see?
Do you have ideas for designs (I’m still experimenting with design software)?
Any [non-copyright] phrases you’d like to see on something?
Looking on the “Insights” tab of my stats, it’s clear to see how little I’ve been posting. It’s also extremely clear when you look through my archive. I was looking through my archive the other day, because I’m planning out a blog overhaul (keep an eye out for changes!), and made a startling realization: my posting frequency dropped off significantly with the passing of my grandmother.
Grama and I were extremely close. She was, by far, my closest relative. Since then, I’ve been having an odd kind of identity crisis. I’ve also been struggling with a deep and different kind of depression than I’m used to… I’m used to depression, I’ve been struggling with it for most of my life, but this is somehow completely different. I didn’t even really realize that it was happening until I made the realization about my blog posting and started thinking about it.
Video from Dysautonomia International‘s Facebook Page
I am being quite active this year. I don’t think I was even really aware of it last year, or if I was, I was still kind of embarrassed and confused by my diagnosis so I definitely wasn’t as active and excited about it. But this year, oh my goodness! If you are following me on Facebook or Instagram, or both, you have probably been quite surprised in the uptick of my postings and the sheer amount of turquoise.
By the way, dysautonomia’s official awareness color is turquoise! And, if you also weren’t aware, that is one of my favorite colors and has been for years now, so it’s an awesome coincidence and just makes this even better!!!! ALL THE TURQUOISE! *cough sputter* Sorry about that.
After a few weeks of dealing with increasing side effects, I am now saying goodbye to my Topamax. I didn’t actually realize how many side effects I was truly dealing with until I had my neurology appointment yesterday, and the appointment ended up freaking me out a little bit. Now that I know how many side effects I was actually experiencing, I really wish I had gone in quite a bit earlier, but at least I finally got in. However, I’m terrified about coming off the Topamax at all, because I’m scared my migraines will come back with the debilitating daily frequency I was experiencing before I got put on it.
So what side effect made me finally call my neurologist? Uncontrollable muscle twitching in my eyelid that was so intense it was blurring my vision:
We’ve pretty much all had muscle twitches in our eyelids, right? Usually, it only happens to me when I’m tired. Sometimes, it’ll happen just because, but it doesn’t happen very often. Well, I took this video because it started happening A LOT! This was the third day it had happened in a row. This was about the sixth time in those three days, and this was after my shower… where it had been happening for most of my shower. Thankfully, it stopped very shortly after I got dressed. But I went straight to the pharmacist and had them do a medication review. The only medication that caused muscle twitching was Topamax, and it also had a lot of eye problem side effects (scarily enough). The next day it twitched for about three or four hours straight, then it also twitched for most of the evening. Thankfully, the last two or three days I’ve had a break from the twitching (it’s actually gotten painful now).
Finding Life's Silver Sun 