One Month Post-Surgery Update: Lizz’s Perspective

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!

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Immunology Lab Results: I GOT ANSWERS!

*sings and dances*
I’m broken and I have proof, I’m broken and I have proof!
*keeps singing*

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

Cubital Tunnel Syndrome Post-Surgery Update – from Dan

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.

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My Upcoming Cubital Tunnel Syndrome Surgery

chronic illness warrior strong arm (1) signedFor 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.

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Infection Survival Guide for the Chronically Ill (and “Normal” People, too)

Respiratory infections, sinus infections, ear infections – oh my!
Gastrointestinal infections, viral infections, bacterial infections – oh, die…

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

Izzy’s Biopsy Results

If you didn’t read the first post, please read “Izzy’s Battle with an Aggressive Brain Tumor” to learn who Izzy is and the first half of the story.

Izzy’s biopsy was performed on January 30th. It went well, and she was cognitively back to herself as soon as she woke up from anesthesia! However, she was really struggling with nausea (due to the anesthesia and chemo). She was in the hospital for a few days to recover, and was able to go home on February 1st. Then, we all just had to wait on the results!

6x4 biopsy recovery

Izzy and her older sister AW hanging out in her room. That giant moose is at least 5 feet long (I think it’s actually 6 feet long). I found how much stuff they managed to cram into the bed comical!

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World Rare Disease Day 2018

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)

WRDD-sm-graphics_2018_v1

These are some of the reasons we have World Rare Disease Day.

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Upright MRI Results

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.

Upright Cervical MRI signed

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).

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DIY Aromatherapy, Fizzy Bath Bombs

“Self-care” has really been a buzz word lately, hasn’t it? But, that’s for good reason, taking care of yourself really isn’t a luxury so much as it is a necessity. If you are at your wits end and have gotten to the point where you have started to “lose yourself” (you know, that moment when you say “wait, who am I anymore?!”) then you just can’t effectively serve/help/interact with the people around you!

Self-care can be as simple as locking the door when you shower so you won’t be interrupted, taking 15 minutes in the morning to enjoy your favorite beverage, or spending 5 minutes playing your favorite game on your phone while you wait for something to happen (like waiting for the kitchen timer to go off). It can also be extremely elaborate, like an entire spa day or going on a vacation (or daycation) by yourself!

These DIY aromatherapy bath bombs are somewhere in between the simple self-care and elaborate self-care. They feel extremely indulgent to use, but they only need about 20 minutes to assemble several of them and about a 20 minute bath to utilize them (though, I’ve found my baths last a tad longer when they feel this luxurious 😉 so, whatever you have time for). Continue reading