Tag Archives: invisible illness

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 →

The Appointment from Hell

I am not using names for legal protection. While I want to scream this doctor’s name from the rooftops and tell everyone in the world to never ever go see this jerk, I know that if he finds it I could get sued for libel. Instead, I am writing this to educate and warn people that doctors like this exist, and as a form of therapy for myself to help me process this awful appointment.

I am also not using names in case this does end up in a legal case. During legal investigations and such, you’re not allowed to talk about the case, so I don’t want to cause any conflicts by having it published. Well, obviously my husband’s name appears in there because he was in the appointment and he is already not anonymous on this blog.

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A Rough Start to the Year

Hello everyone!

I’m currently working on a different post that will be a little more fun, but it’s taking quite some time. I’ve been having an extremely rough start to this year, and it’s showing in literally everything I try to do. I’ve even started to appear sick, which is worrisome because normally I don’t look sick or tired (except facial expressions) on a regular basis – but now there are dark circles forming under my eyes, and my eyelids are always a little too pink and puffy.

It’s easiest to post on Instagram regularly, since I don’t need a computer and computers can cause me migraines. I would recommend following me on Instagram to get updates the fastest: findinglifessilversun on Instagram.

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A Look Back at 2017 – part 2

2017 was an extremely busy year for both of us (Dan and me). I was writing my “Look Back” post and it got extremely long, so I needed to divide the year in half! You can find the first half of the year here: “Look Back part 1.” This post covers July through December 2017!

July

Lizz

I followed up with my cardiologist, but had to see the nurse practitioner because his schedule was too full. I don’t like seeing NP’s for cardio because they can’t ever do anything for me. At least she talked to my doctor and then called me with how to change my medications.

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A Look Back at 2017 – part 1

2017 has been a chaotic year for both Dan and me. Honestly, it’s hard for me to even wrap my head around because it flashed past so quickly – I feel like I haven’t gotten to take a break since last Christmas!

I wanted to write up a little summary of our year, both so you can know what we have been up to, and so that I can have something to look back on myself. Since this is a summary, I will include links back to any relevant posts so you can read more detail. All links are either to my personal blog posts or Instagram posts.

January

Lizz

My pelvis and back started causing a lot of problems in October 2016 (read more here and here). By January, I was in excruciating pain 24/7 and having to spend most of my time on the couch. Thankfully, I saw a new doctor (a physiatrist) and at the end of January, I got a cortisone injection into my right SI joint.

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Happy Holidays from The Bulfers!

I hope you were all able to find some joy in this holiday season in whatever circumstances you found yourself in – I know the holidays can be very difficult for some people.

Personally, I extremely overdid it and my body crashed hard on Christmas day. Thankfully, our Christmas day is very relaxed and so I kept from overdoing it even more. Unfortunately, on the 26th, I woke up in extreme pain because I had managed to dislocate my L5 vertebra and my sacrum (again). My vertebrae dislocate rotationally, meaning they rotate like they’re supposed to, but get stuck rotated and won’t go back into place properly without manual manipulation. I was at a “chronic illness ten” meaning that I would have gone to the ER had I not known exactly what it was and instead just kept doing what little I could to keep my brain distracted. Experiencing “chronic illness ten” pain is frustrating, because unless someone knows you extremely well they have no idea how badly you are truly suffering.

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Eosinophilic Esophagitis – What is it Anyway?!

I have eosinophilic esophagitis. I’ve briefly explained it before in my “World Rare Disease Day” post and in “My Chronic Illnesses part 3.” However, I wanted to explain it in more detail because it’s probably the condition I get asked about the most.

I do feel the need to add my disclaimer to this post: I AM NOT A DOCTOR! The information in this article is for awareness only and is not intended to diagnose or treat any conditions. If you suspect you may have eosinophilic esophagitis, please talk to your doctor before taking action.

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Dysautonomia Awareness Month 2017 Wrap-Up

I can’t believe that October is already over! How is it November 2017 already?!

Sorry my posts completely stopped. I got very sick and couldn’t look at my computer for a good chunk of the month, and then life got in the way after I recovered.

However, I didn’t want you to miss out on all the stuff I did post for the month!

Blog Posts

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10 Common Dysautonomia Misconceptions – Dysautonomia Awareness Month

Because so little is known about dysautonomia, there are a lot of misconceptions out there! I wanted to address ten of the most common ones here.

#1: Dysautonomia = POTS

As I discussed in my “What is Dysautonomia?” post, there are many different types of dysautonomia! While many people with dysautonomia do indeed have POTS, especially younger people, it’s only that way because it’s one of the most common types.

umbrella-158164_1280Dysautonomia is an umbrella term, meaning there are many subcategories. Dysautonomia International has thirteen distinct types listed on their website, and they state “this is not an all-inclusive list.” There are so many different types, and types still waiting to be classified and studied. Continue reading →