Its 2024 and we are already in February. I don't mind much because its my birthday month and I turned 46 this year. I remember just turning 40 so I know that time is now doing a light jog instead of a march. So I am determined to not let this year slip away quickly like last year did. Before I get into new things I feel that I need to take a step back and do a bit of catching up for it all to make some sense. There are some new things and changes but I will say that last year was a doozy. To make it all make sense I do need to add a bit about 2022 because it was the reason 2023 was one of the worst symptomatic years that I have since this all started in 2009.
In 2022 I purchased my first home 🎊and the process almost broke me 😭. I started out the year with a program that was supposed to be very helpful with downpayments, planning and counseling but their process and lack of communication was flare inducing. I had to drop them and around April I started working my coworker, turned Real Estate Agent. She was truly a trooper because we rode around 2-3 times a week looking at homes. We were logging off from our job at 5pm and running out the door to make these open houses. My POTS was completely not interested in my excitement of purchasing a home. It didn't want to climb all those stairs and my MCAS didn't want to be in these dusty and smelly homes. Did I mention that I also fell once? So...Yeah, this was a lot on me. Oh, and there was INSANE over bidding on these houses and folks waiving home inspections. My Autonomic Nervous system had a major workout. I had no down time and needed to recover any way that I could.
Being constantly on the go had my system malfunctioning and I needed to take a break from the rat race, so I took it.
The other catalyst for irritation was my overwhelming desire to move from my (then) location. I think that I was just done living there. The neighbors were inconsiderate, the area was getting worse and the management was just plain bad. I already was packing and purging since the beginning of the year. Thats how done I was. My dear coworker/realtor coaxed me back out after taking off two months. She found me a new lender (the last one was tripping) and I had a new, more determined, outlook for this search. I widened my search area and we hit the streets! We were back out by September and in October someone finally accepted my offer😃. I was shocked because this was in a place that I thought that I could never afford due to these property taxes. But thats not all. So autonomic dysfunction does NOT like extremes. No highs. No lows. This whole process evoked ALL the emotions. Offer accepted, great. UNDERWRITINGGGGGGGGGGGGGGGG. No so great. Why wasn't I warned? There should be a black box warning issued: This process is not for the weak or autonomically impaired ☠️. In a naive attempt to head off any foolishness, I had all my ducks, chickens, cows and donkeys in a row. Don't you know that they still asked for the same stuff, nonexistent stuff and changed stuff. Oh, and my state was giving me money. Boy oh boy they were worse!! I was in a constant flare that wouldn't let up. However, after delays, two closing extensions and more forms, I closed on 11/23/22. 😩.
When God said, "A friend loveth at all times and a brother is born for adversity.", I knew that he was talking about my friends and family. While I was at the table signing an encyclopedia size stack of papers, they were helping my kids move us out of the apartment into the new house. Let that sink in. They👏🏾moved👏🏾us👏🏾out👏🏾. I was supposed to be at an important meeting the next day on 11/24 but couldn't go because of the move and they stepped in. I still can't think about this without tears welling up in my eyes. I got the keys, opened the door to boxes and a confused cat. He didn't know what was going on but was happy to explore his new surroundings. I didn't care about much just that my bed was set up and I could sleep. The next day was my daughter's birthday and we hit the road to Raleigh, NC. The flare continued.
My nervous system was fried from this entire ordeal. So much so that I went in to 2023 and I couldn't recover. Not once did I mention work in this rollercoaster of a year, but I do work fulltime and that started to irritate me too. I didn't have any more spoons to give and work was the most expendable thing on my list. I work from home and I could barely manage that because of the residual effects had my nervous system revving as if I had my foot on my emotions. I promise I didn't. It was just life. I was extra sensitive, my brain fog was almost permanent, I hurt and I was starting to get normal people colds. It was getting bad. Around this time last year I had an appointment with My POTS Specialist Nurse Practitioner, and we decided that I needed a break and deserved one. I accumulated over 1250 hours of FMLA and the next day I started my five-month break. I didn't intend for it to be that long, but I really couldn't get two feet in front of the other without collapsing. Well, I needed more but it was getting to where I didn't want to go back.
The time off was much needed but it wasn't all rainbows and unicorns. I didn't get to do passion projects (this blog) or work on myself, like I planned. I struggled with a capital S. Work wasn't the issue like I thought it was. It was annoying and my POTS was making it hard to function but something else was afoot. My symptoms were getting worse and a few new things were popping up. I was flaring more than a roman candle on the 4th of July. What I really needed was to put in a sensory deprivation bubble for six months but that wasn't possible. The reality was that I was in need of more medication to assist my symptoms and my pain. I was only on a few meds and they were for allergies (MCAS), one for my heart rate, one for migraines as needed and anti-nausea as needed. I avoided pain medication because everything was tricyclic and raised my heart to dangerous level or it put me out cold and I couldn't function. I was discouraged by the realization that I needed more medication because I didn't want to become dependent. But it was evident that something was needed because I was truly languishing.
The Nurse Practitioner suggested a few options to assist. The first one I tried was Ketotifen. Its a compound medication to help my allergies so I didn't have to drink all that Cromolyn Sodium. It was hard to get made and covered by insurance. I eventually found a place in New Jersey to make it but I had to pay out of pocket. Par for the course when to comes to POTS medications. However, that is another post for another day. So how did it go? Pros: It helped my allergies immediately. I mean I felt great, allergy-wise. I have indoor and outdoor allergies. I also have food allergies and I break out in hives just sitting still. I am also allergic to the cold and will develop hives too. So this helped out immensely. I also got a lot of sleep. Cons: Everything else. This thing here has to come with a PSA warning: If you take this please be in or near your bed within four hours because it will SHUT YOU OFF. Like someone pulled your plug and you shorted out like Johnny 5 on the spot. I would sleep for four hours and then got up groggy. I would have dinner, talk to the family, take another pill and then pass out at the appointed time for the rest of the night. It also made me ravenous. I was only awake 4 hours at a time, and I was starving all those waking hours. I could not stop the craving either. It was so bad that I gained 20 pounds in two months. I couldn't function at all and I was deconditioning. Needless to say that Ketotifen was not for me. Enter Lose Dose Naltrexone (LDN). This helps with pain and reduces your cravings. Well, it helped some so I kept it. Its also a compound medication and got it from the same pharmacy and pay out of pocket too.
Since I don't want you to read an anthology, I will make a part two because this only brings us to June, maybe. I went to the Dysautonomia International Conference for the first time in person and I got a new diagnosis. Lots to talk about. Thanks for reading.
Until next time ❤️