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.
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!
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.
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.
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.
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.
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.
Even though my body has been cooperating recently, and I’ve been able to do a lot more, I haven’t been “healthy.” I’m still experiencing pain, taking a slightly slower period of time to recover than an “average” person, and having to deal with some other aspects of my chronic illnesses. Even though I was able to walk around on Mt Evans and I enjoyed a car trip and short hike with my husband to look at the fall colors in the mountains, I’ve been having some struggles. Continue reading
It’s easy to fall into the trap of only showing the negative aspects of chronic illness. When we’re “healthy” (for us) and feeling well, we tend to go out and live! When we’re sick and feeling awful, that’s when we think “I haven’t written in a while, and this is something interesting to write about.” If we’re just so-so then we’re probably doing something that we deem ‘boring’ and don’t write about it. I try to keep my blog focused on my entire life, not just the chronic illness pieces, but it’s definitely easier to write about the “bad times.”
However, I have been quite lucky lately: my body is cooperating. For the most part, I’ve been able to feel relatively normal in the past few weeks. No, I’m not ‘better’ but I’ve been able to do more than I had been able to do in over a year! My Pilates classes went surprisingly well, my physical therapy was going really well, and I’ve been able to be significantly more active day-to-day! Of course, I’m waiting to accidentally run off a cliff (metaphorically of course), but until then I’m really excited that my body is letting me be ‘normal’ most of the time! Continue reading
I made an appointment to see the only adult geneticist in the state of Colorado over one year ago. (Read more: here.) It was actually fourteen months ago. The appointment was because I wanted to know for sure if I had something more specific than the joint hypermobility syndrome my rheumatologist diagnosed me with (as a working diagnosis).
So I waited… and my appointment was just on Monday! I’m extremely excited about it, and it was one of the best appointments I’ve ever had.
At the end of April, I underwent 10 hours (over a three day period) of neuropsychological testing and interviewing. Obviously, to go through the data of 10 hours of testing takes a while, so I had to wait until June 5th to get my results. Only a very small part of the results were actually a surprise, and none of it was bad news.
I was officially diagnosed on the autism spectrum! Yes, this is good news for me, and validates the “I think my brain works differently than the average population” feeling I’ve had my entire life. My official diagnosis is “autism spectrum disorder, level 1, without significant language or intellectual impairment” (because they like to make diagnosis names as long as possible). I’ll get more into the details of this diagnosis below.
I was also given a secondary diagnosis of “other specified depressive disorder,” which seems to essentially just be a moderate and persistent depression that doesn’t fit the diagnostic criteria for other depressive disorders; this wasn’t a surprise at all because I have had depression since I was in late elementary school (maybe about 10 years old), and have been treated off and on for years. Continue reading
I’ve hit the end of the road with my allergies, apparently. I went to my ENT/allergist on June 2nd, to follow-up about what the specialist immunologist/allergist had to say. Sadly, the super specialist just wanted to focus on my eosinophilic esophagitis (EoE) and didn’t care about the reason I was actually there: I would massively overreact to every allergy shot I got at doses most people don’t ever react to (even anaphylactic people). Even though they want me to come back, I will not be returning to the super-specialist because my EoE is being managed by my gastroenterologist and my ENT/allergist is more concerned with my allergies than them. Continue reading