I’ve always hated the phrases “online friends” and “friends in real life.” Sure, back when the internet was first getting popular for social uses, all your internet friends were “friends in real life,” and it felt necessary to differentiate between people you enjoyed talking to (usually anonymously) in chat rooms or on forums versus people you knew and socialized with offline. But, that’s not how the internet works anymore.
I know several people who met their now-spouses (or serious significant others) online, and many of us with disabilities find that a majority of our social lives take place online. Via this blog and my associated Instagram account, I’ve met some amazing people and have greatly expanded my world. My sister went on a foreign exchange program while doing her bachelor’s degree and made friends from all over the world, and I used to be jealous of that. However, I’ve realized that I have close friendships with people from all over the world, as well. Granted, a majority of the people I’m close to are from the USA, but I have good friends in other countries even though chatting with them is more difficult due to time zones. When I think about it, my sister is probably the only person I know “in real life” that has friends that are more spread out than I do.
Physical pain is a part of life – everyone experiences it at some point. For people with chronic health conditions that include pain, physical pain is a “normal” part of our daily lives. Thinking back on my life, there isn’t a single day in my memory where I wasn’t in some form of physical pain. I have a genetic connective tissue disorder (G-HSD: generalized hypermobility spectrum disorder), and have had symptoms of it my entire life. Pain and I are old friends, but that doesn’t mean I won’t do whatever I can (within reason) to shove pain out the door for even a few minutes. Continue reading →
It’s been just over four weeks since my elbow surgery. The surgery will hopefully correct pain and numbness that I’ve had in my right arm for over two years due to cubital tunnel syndrome. You can learn more details about why I had the surgery here, and read the immediate post-op update here.
As Dan had said, the surgery went well. I made sure to request they not use Versed during anesthesia (we learned I reacted poorly to it after my SI joint injections), and waking up was a lot easier without it! I was nowhere near as nauseous as I have been after every other surgery. They still gave me IV Zofran right after I woke up though – I was a tad nauseous and nerve pain can always make that worse. I was dealing with pain (and somehow able to give it a number while barely conscious), and they gave me several (3) doses of IV fentanyl before releasing me. (I just looked at Dan’s post-op update, and they also gave me a Dilaudid apparently.) Below is a slideshow of pictures from my surgery day!
*sings and dances*
I’m broken and I have proof, I’m broken and I have proof!
Before I get to the good news, let me back up a little. Earlier this year, I went to an immunologist my ENT/allergist had recommended I see. It was the worst appointment I have ever seen and because of it I terminated my relationship with my ENT/allergist and decided to seek care elsewhere. You can read more about my appointment from Hell: here.
After that awful appointment, I went to my rheumatologist. Some of what the horrible immunologist had said about my conditions really shook me, so I wanted to double check on my fibromyalgia diagnosis and get a little more clarity as to why I had received the diagnosis exactly. I also wanted to get a recommendation from him as he is an amazing and brilliant doctor and has given me many excellent recommendations in the past.
I set up an appointment with the new immunologist for February 26th. That first appointment was amazing: an hour and a half of him truly listening to every single thing I said as we went through my history system by system, asking me in detail about many of my parents’ health conditions, him formulating hypotheses out loud about what may be going on and what may be connected to what, and then figuring out testing to run. He requested records from several doctors to make sure they hadn’t missed anything in their tests, and he ordered a bunch of lab work. Continue reading →
Hey everyone, Lizz here! I had surgery on my elbow yesterday (March 27th), and knew I would likely be incapacitated for a while. However, I know a bunch of you wanted to know what was going on as soon as possible – especially since we weren’t sure which surgery I would receive. To easily update everyone, I am having Dan write this post (I’m writing this blurb in advance)! I will write my own update as soon as I am able. There may be a few non-updates that come out in the meantime, as I have a few drafts that Dan just has to hit “publish” on. Be sure to keep an eye on my Instagram, as I’m more likely to be able to update that before I can update here.
Without further ado, here’s Dan’s update:
Post-Surgery Update – Dan’s Perspective
As Lizz indicated in her intro, yesterday was her surgery day. Since her arm pain began, over two years ago, it’s been quite a journey trying to figure out the cause. There was definitely a little tension built up from having to deal with that and the looming surgery so I’m happy it’s finally done. Here’s how it went.
For the past two years, I have had rather severe nerve pain in my right arm. I haven’t talked about it a whole lot because we had no idea why it was happening or what we could do about it, so I just tried my best to keep going despite it. The past six months, however, the pain has gotten to a point where I just cannot ignore it any longer.
I am right hand dominate, so not using my right arm just isn’t an option for me. These past six months, I have had to give up writing anything by hand past a few sentences, change how I use my phone, modify my typing, and change a lot of my habits with how I move around during the day.
Currently, I’m extremely ill. I have some sort of awful infection in my head and GI system. I’ll spare you all of the TMI details, but let’s just say I’m a giant ball of disgusting. Lots of phlegm is involved, nausea, and too many trips to the restroom. There’s also severe full body aches and bone crushing fatigue. It’s not pretty.
It got me thinking, what are some must-haves for surviving a nasty infection like this? Here are my product recommendations (and why I recommend them) for surviving an infection while dealing with chronic illnesses. Continue reading →
A rare disease/condition is defined as a condition that effects less than 200,000 people (in the USA). There are more than 7000 rare diseases and conditions currently identified, with more being discovered daily. There are more than 350 million people in the world living with a rare disease or condition, with about 30 million of them living in the United States (which is about 10% of the population). Sadly, since so few people are impacted by each individual condition, most rare diseases do not have a single FDA approved treatment and patients (and doctors) are left grasping at straws to find ways of managing the condition. Because there are no treatments, many patients are literally left to die. (Information from Global Genes RARE Disease Facts page)
These are some of the reasons we have World Rare Disease Day.
My neck pain and headaches have been getting worse lately, and I noticed that they are significantly worse when I am upright for longer periods of time. I also started getting headaches that are either (or possibly both) occipital neuralgia or trigeminal neuralgia. After some research, I discovered that sometimes these symptoms can be due to craniocervical instability (CCI) which is common in people with connective tissue disorders. To see if CCI is causing any problems, they use an upright MRI.
I talked to my neurologist about it, and he agreed an upright MRI could show us something that my supine (flat on my back) MRI had not. He found a place nearby that did them, and filled out the orders for me.
Image of my upright MRI. This view is as if you were staring at my left ear (you can see my chin pointing towards the left of this image).