I’m going to be mad at myself for not documenting my health better this year. It’s been very helpful to have a record in my archives from when I last dealt with urticaria and angioedema, fainting, and all of the things I tried. So let’s see if I can catch up a bit in this year-end review. I’ll probably mess up the timeline a little since I’m going from memory, my scattered archives, and emails sent to my mom and friends. (As is the case with my year-end reviews, paragraphs are less paragraphy and more brief review sentences. Kinda choppy, but helpful for me to look back on.)
January
We were working through our list to get our house sold. I was working full time from home and the stress was at an all time high with my biggest client and contract re-negotiations that were not supposed to come up again until the spring. After two years of trying to sell the house ourselves, we listed with a realtor.
February
I was able to go to UT and help my sister during her labor. She was amazing, and gave birth to her little miracle baby on Valentine’s Day. It was a very difficult delivery as he was born with a very large tumor and had to undergo intensive surgery.
March
Our house was under contract and sold! We finished up some projects and due to some work / employment changes I was able to quit web design. The morning after I quit was the first morning I had woken up in a year without feeling like there was an elephant sitting on my chest. The move was quite a whirlwind and very fast. We got rid of a lot of stuff, but ran out of time near the end and ended up ‘steam shovel moving’ stuff in the shop to the rental’s garage with all the good intentions to eventually go through them (ha). With loads of help from friends and people from our ward (church body), we got into our little rental in the country.
April
We got settled and I started lap swimming. We only planned on being in the rental for a few months, we were busy house hunting; looking at land, designing house plans, and checking out distressed fixer-upper properties. It felt like our farm dreams were finally well within reach. My brother and his wife had a sweet little baby boy.
May
We planned our garden and got it planted. I continued to swim laps and vented a lot about stupid lap lanes and grumpy old men waving shampoo bottles. You know, as you do.
June
The policy at the pool was changed due to my silly cartoons and fist-shaking, but I was too embarrassed to ever go back. I started swimming in town instead. We went to swim camp early in the month. We got really excited about the carpet-house, but got outbid on the property. I was really, really sad about it and cried a lot. Our cat had kittens.
I started passing out again. I was depressed and stopped blogging and withdrew from my friends. I couldn’t believe this was happening again. I met with my primary care doctor who thought I might have POTS and suggested putting me on a beta blocker. I met with my cardiologist who agreed with the POTS diagnosis. Both doctors were afraid of my already very low blood pressure, so they started me on the lowest dose. The heart doctor wanted to do another bubble echocardiogram and transcranial doppler to make sure my PFO repair was still in place. Unfortunately, we didn’t have insurance yet and I was really reluctant to do anything that’d get me back into any kind of medical debt. He said my heart tones sounded good, with the already-known murmur & valve regurgitation (I have 3 faulty valves), and didn’t think it would hurt to wait until fall / early winter when insurance through E’s job would kick in.
July
The fainting continued, and we hit a wall in trying to purchase a property. I didn’t want to write about any of it. Even though we were out of debt and had a lovely down payment from the sale of our house, our offer fell apart during the final stages. We worked towards getting private financing, but I started to worry that with my health, taking on a fixer upper right now was a bad idea. We walked away from the privately funded purchase on the day we were supposed to sign the papers. We had family pictures with my side of the family and I didn’t collapse once, hurrah. (No, I don’t know what Sabra & I are doing with our arms, and yes, I have extremely long monkey arms.)
August
Fainting, collapsing, and seizing / tremoring became a normal part of my days. Somewhere in the summer Urticaria (chronic hives) and Angioedema (swelling) came back and I was just like, “Oh sure, why not?” At first I was hopeful because they were less severe than the last time, but they got worse. Somehow I pulled off a couple of camping trips (without E — what was I thinking?) with both sides of the family and I did pretty well except for one evening around the campfire when I started tremoring badly and had to be hauled back up to my trailer in the back of my brother in law’s truck. A+ for super fun party time.
This was also the month this embarrassing thing happened.
My cardiologist recommended I try the Keto diet to help with my POTS symptoms. I got off to a rough start with it; I’d calculated my macros incorrectly and it was making me feel worse.
September
My mom came up to stay and help. My kids were having a really hard time – we were in a new place, daddy was gone all the time, and mommy was stuck in bed. My daughter especially really struggled during this period and it was hard on all of us. I got loads of bloodwork this month and found that I had Hashimoto’s – I’d been on dessicated thyroid for a few years for hypothyroidism, but now my body was making antibodies against itself. Awesome. I found a specialist in Utah for the Hashi’s who would work with me over the phone until I could see him in person.
My cousin AJ got in a terrible car crash this month and was paralyzed from the neck down. He can move his arms now, but is still very much wheelchair bound. He’s living at my grandma’s house right now and I’ve been so bummed we haven’t been able to get down to see him.
October
I continued to treat my screwed up cortisol / adrenal function and saw improvement. I was passing out less, and my mom did not have to be with us 24/7. My hives and swelling, while still annoying, seemed to be under control. Instead of taking 3 Benadryl every 4 hours, I could take 2 in the morning and 2 or 3 before bed. I was able to start driving the kids short distances, and I could grocery shop if I used the handicap cart, or the beep-beep cart, as my kids call it, due to the embarrassing beeping it makes when I have to back up. We were able to go to my friend Jennifer’s Halloween party and do more fun things in our homeschool activities.
Insurance kicked in on the first of this month as well, which felt pretty amazing. I got the kids’ eyes all checked — N’s reading glasses didn’t cost me a dime, it felt like Christmas! I also had dentist appointments for everyone — first time we could get x-rays and I didn’t have to use coupons or cash-price bargaining. K had a few cavities that would have set us back just under $1000 dollars, but the insurance paid for it all. I cried. We started trying to figure out how to get me down to UT to see my specialists and have tests done, but then we got caught up in moving, so I continued to have phone consults and lab work done in Idaho.
E. was still gone a lot, and was wasting a lot of his ‘off time’ by driving 10 hours round trip. We talked a lot about what we should do: Stay put through the winter? Buy something locally so the kids and I could be near our wonderful friends? Move in with my parents temporarily so I could be near my thyroid and heart specialists? Or move to Wyoming to be closer to E? We had looked around at houses in Wyoming but reeled from sticker shock, and rentals were so expensive and often too small for our family. I worried a lot about E. driving home through the winter over the mountain passes in bad weather. At the end of the month a totally do-able rental popped up in WY, and E. jumped on it.
November
Another whirlwind move. I was still blacking out and collapsing, but less frequently. Still, nobody wanted me to be packing boxes, fearing the stress and hard work of moving would give me a set back. We had so much help from friends and church members, it was really amazing. The help we received deserves a whole post. With the help of my good friends we were able to go through the junk we’d steam-shovel-moved in the spring and got rid of tons of stuff. All but a few belongings fit into a U-Haul trailer, our vehicles, and our own little flat bed trailer. We stored things we didn’t want to part with like big tools (table saw, etc) at Kat’s house. My friends and I cried a lot. I was healthy enough to make the drive, and followed E. in the U-Haul to Wyoming on the 6th of November.
We had some help from the homeschool group down here, as well as our church here to get moved in. My mom and sister met us and helped, too. It was nice to have familiar faces at the end of our journey. With our belongings whittled down, I was able, with the kids, to get us unpacked and pretty settled in just a couple of weeks. We had Thanksgiving dinner here, and I felt like we were settling into our new normal. With the hives and swelling mostly under control, I felt like I was getting a handle on how to deal with the POTS symptoms. I had to be careful and conserve energy, but we were doing alright. I was able to start very light yoga again and was really excited to be able to move and work my muscles. I could handle most positions well, but had to be careful if a set was going to take me from being low to the ground to standing quickly, or vice a versa, as I could pass out.
December
As nice as it has been to be closer to E. (my daughter is so much happier, hooray!), this month has been pretty discouraging. My hives and swelling decided to flare up again and it’s been pretty bad. I’m never sure what I’ll wake up looking like. Huge lips, swollen eyes, or both? One morning my nose was swollen so weirdly it looked like it had been broken. The hives are in their puffy welt stage, and cover me from scalp to toe. They are so hard to get under control if I wake up with them already puffed out and huge. It’s been pretty miserable again and my fainting spells have become worse. Last week I fainted 20 times in one day. Exercise was put on hold again.
After a phone consult with my doctor he encouraged me to try the Keto diet again. He was having good results with it with another patient who had a lot of my symptoms and issues. I figured it couldn’t hurt — and honestly when you feel this way you’re willing to try just about anything — so, with his help calculating my macros this time, I started that again this past week. It’s going better this time and I am feeling a bit stronger, I still have episodes but I’m not collapsing or blacking out as frequently, so my hopes are pretty high. No change in my hives / swelling yet, they are still pretty heinous. I find the diet similar to Paleo, except you can have dairy and eggs if you’re not allergic / intolerant, and I am not. I guess we’ll see how it goes.
The rest of the year
Now that we’re settled and have insurance (huzzah!), we have plans to get to UT and see my specialists and finally have some more tests done. I will be getting some follow up labwork here as soon as I get established with a new primary care physician. It’s always fun to train a new doctor on all my levels of weirdness. (It’s not at all fun.)
I know all my symptoms and diagnoses can be kind of confusing, I’ll be back (for realsies) Monday (I already have it written and it’s scheduled to post) to kind of straighten out what I have and what is causing what (lots of symptoms overlap), what I’ve tried, what I’m trying, what I might try, etc. And just a general sort of ‘learning to live with chronic illness’ stuff. I’m always hopeful for healing and finding and treating the triggers, but I also have to learn how to cope on a day to day basis. xx
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