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.
In January, I also got the results of a Gastric Emptying Study that I had at the end of December – the slow side of normal, but still normal. I started seeing Kara, my dietitian, in December to see if we could figure out some stuff with my IBS and chronic nausea (read more about that visit here). I started the low FODMAP diet at the beginning of January, which you can read about week by week here: 1, 2, 3&4, 5. (Week 5 of the low FODMAP diet technically took place in February, but I wanted to put all the diet posts together for easy finding.)
I also had an appointment with a specialist immunologist at a nearby hospital. Sadly, that appointment (and the two that followed) did not go entirely as hoped so I stopped seeing him – he only wanted to focus on one of my conditions that I was not seeing him for and dismissed the reason I was actually there.
All told, including all of my physical therapy, I had a total of 12 medical appointments in January. I really did not do much more than that because that is an exhausting amount of appointments.
Dan also had an eventful January. He started his third semester of grad school at CSM, which is a 45 minute drive from our house, working towards a master’s degree in mechanical engineering. He also works full time while in school, so his days get cramped and hectic. January also had a launch (he works for a rocket launching company) he needed to travel for, so he was out of state for his second week of classes.
Since the low FODMAP diet did not work for me in January, I went back to Kara and we decided on a different plan: I was going to start the LEAP testing and diet plan. I got my blood drawn and then had to wait for the test to be completed (follow-up was in March, so the rest of the information will be in the next summary).
One of my biggest changes was that I SWITCHED CARDIOLOGISTS! The cardiologist that had diagnosed me with POTS had been increasingly irritating me, and I was not happy with the level of care I was being provided. Honestly, I stuck with my old cardiologist for way longer than I should have. Sadly, the one recommended to me moved after only two appointments, but I’ve been seeing one of his colleagues and have been much happier since switching! My POTS diagnosis was revoked, and now I have a general diagnosis of dysautonomia. The cardiologist had me do another echocardiogram and a Holter monitor – both of which ended up being completely normal.
I also started seeing a hand therapist and started the very long process of getting fitted for silver ring splints. And of course, I continued my weekly physical therapy which I have been doing for almost 3 years now (I started near the beginning of 2015).
In February, I had 13 medical appointments.
Dan & Not Medical Life Stuff
Dan continued with work and school, and thankfully he was not required to travel out of the state in February.
We had started the process of getting new windows in our townhouse (they were the original 30 year old windows and they were all broken to some degree and had almost no insulation) back in September (ordered them on a Labor Day sale). Sadly, this process lagged on and on, so we still had appointments for our windows in February. We did not have all of the windows and sliding glass door properly and completely installed until October 2017, and we’re still waiting on the reimbursement they are supposed to be giving us.
We traveled up to Wyoming to attend the baby shower for one of our closest friends (well, we’re very close to the couple in general but Dan has known the husband since high school). We also decided to do an eight week Yoga class series that was being offered at the Pilates studio I attend for physical therapy – okay, that sentence is very odd… I go to a Pilates studio that specializes in physical therapy that has a Pilates base and also functions as a regular Pilates studio, and one of the receptionists was a Yoga instructor. The Yoga series was a great break for both of us in our hectic lives.
Once again, March was full of medical appointments. Sadly, I got very little time to blog as all of the time to myself was spent trying to recover from everything else. (Many of the links will start to come from my Instagram as it was easier to document things on there than to properly blog about them.)
At the very beginning of March, I managed to sprain my MCL. I was taking photos for a post for World Rare Disease Day (the last day of February) and sprained it doing a “party trick” – which is precisely why doctors tell you not to show off your “party tricks” unless asked to by another doctor!
I also had a CT scan of my abdomen to check for MALS (median arcuate ligament syndrome) at the beginning of the month. The CT scan came back normal, and most of the symptoms have since resolved, so I think it was related to a food sensitivity that we discovered and have been treating since.
Then, on the 10th, I had a second cortison injection – this time the injection was in my left SI joint which had become more obviously painful when the right one healed.
Near the end of March, I received the results from my LEAP testing, and got the diet plan that I would be following. You can read about my results and plan here. The beginning of the diet was very stressful for me as I kept getting sick and having other things to deal with (outlined here).
At the end of March, I got an infection on a torn cuticle. That happens to me quite frequently, so I didn’t think much of it. Unfortunately, it wasn’t going away after cleaning it and taking good care of it, so I went off to urgent care. Turned out, I had been doing everything right, but needed to start a course of strong oral antibiotics.
I had had a cold in March, a nasty virus that was actually causing me to run a fever (the last fever I ran, actually). Well, after going to urgent care, I got very sick and thought it was due to my virus relapsing – except no fever. However, the second day I was coughing so much and so much sicker that Dan was very worried about me. When I woke up on day 3 (the third day after my urgent care visit) I realized I had bruised at least four of my ribs coughing, and I could barely hold my head up I was so fatigued. Dan made several phone calls, then he rushed me off to urgent care again. Since I wasn’t running a fever, they didn’t think it was the flu, but they checked anyway because flu season was running late. Turns out, I had influenza B.
I actually write more in detail about March and April ridiculousness in this post, because it was just a mass of annoyance that entire month.
Near the end of April, I got hit with a headache that felt like my skull was getting crushed. Normally, I go to sleep and my headache resolves and I won’t get another headache until evening. Unfortunately, this headache lasted me for several days and was coming in waves with the spikes all the way up at a 10 on the pain scale. After two days, I went to the ER because I was worried about what was happening! The ER misdiagnosed it was a “tension headache with migraine crossover,” and I left with only a slight reduction in my pain spikes. I will talk more about the headache in May (below).
I joined doTERRA right at the end of April! Since then, I’ve been extremely excited and gone from a “I guess they could help me emotionally” type of person to a “OMG these are awesome” type of person! I’m pretty obsessed now!
When I went to my neurologist for the follow-up of the ridiculous headache and ER visit, I discovered that the ER misdiagnosed it. Turns out, I get ice pick headaches. Normally, ice pick headaches only last for a little while, but there were so many for so long that they mostly just felt like waves. I talk a little bit more about that appointment with my neurologist in this Instagram post.
I continued with my LEAP diet, but it wasn’t really helping. After emailing my dietitian, we decided to change my diet again. Since food was starting to cause me massive anxiety (including some full on screaming/crying panic attacks), we decided to get less restrictive.
During an ultrasound to check my renal arteries (for renal artery stenosis, I don’t have it), they saw a fibroid on my uterus. I went to my gynecologist to make sure it was okay, and it actually turns out I have two fibroids. Thankfully, they’re “perfect” and aren’t in the way of anything and don’t cause me any symptoms. Uterine fibroids are relatively normal, and apparently most women over the age of 25 have at least one. I’m just glad I don’t have to do anything about them.
I spent a lot of May really struggling with pain, subluxations, dislocations, and the shifting weather that comes with a Colorado spring. I didn’t post a lot on my blog or Instagram, but thankfully had a little bit of a break from my appointments and was primarily just doing my physical therapy and routine checkups.
Dan’s classes ended right at the beginning of the month of May, so thankfully things got a tiny bit less stressful for him.
The very last day of May, I had another upper endoscopy with a longer scope. The follow-up from it was in the middle of June. Turns out, my eosinophilic esophagitis is still there (knew that). Unfortunately, they didn’t give us the eosinophil count, so we can’t actually tell if it’s getting worse. I don’t have significantly more (or less) damage in my esophagus either, so we’re just going to keep doing what we’ve been doing – ranitidine and trying to figure out triggers.
I went back to see my normal ENT/allergist, and we pretty much ran out of options with my allergies. He agrees something fishy is going on with my mast cells, but doesn’t know enough about mast cell activation disorder to give me an official diagnosis. He also agrees I have some sort of systemic eosinophilia, but again, doesn’t really know much about it. Thankfully, since he doesn’t know a ton about stuff, he’s totally open to me asking for new treatments. So now I see him every six months to make sure nothing is going wrong.
I had an EEG at the end of the month to make sure I’m not having any seizures – thankfully, I’m not!
My dietitian started me on supplements for my fibromyalgia and pulled me off the LEAP diet. Dan and I decided to try to slowly add things in since I’d done the really restrictive elimination diet anyway.
My most exciting medical adventure actually started in April and I got results in June. I am autistic! I’ve known a very long time that I wasn’t quite the same as “normal people” mentally (well, I figured I couldn’t be because the world would be different if everyone was like me), so I started testing in April. Finding out I am autistic has been a huge weight off my shoulders and I have a new filter through which to look at my life through! You can read all about it in this post, where I detail the testing and my autism!
June 14th marked out 4th wedding anniversary! I can’t believe we’ve been married for four years already! Anniversary Instagram post, here.
The last two weeks of June, we went to visit my family in Southern California (they live east of Los Angeles). On the drive down to my parents’ house, we drive past (ish) the Grand Canyon so we decided to go see it this time! We went for a walk, in over 100°F (37°C), and I was able to walk for over 2 miles! Grand Canyon Instagram post, here. Also in California, we went to the Huntington Library and Botanic Gardens. My sister then took us to the San Diego Zoo as part of our Christmas present! The vacation was a lot of fun, and I was very proud of my body, but it took a lot to recover and was very nice to be back home.
Since this post has ended up much longer than originally expected, and I’m only halfway through the year, I will stop here!
The second part of 2017 can be found here: “A Look Back on 2017 – part 2“