Long Overdue Update and Sorrow and Celebration in 2024

Hey everyone! It has once more been quite a long time since I wrote a blog post and much has happened in the last year and a half. I slid into a depression in October of 2023 and God jolted me out of it in January of 2024. Jord and I got sick the second week in January--he got it first and then I came down with it and was tracking about a day and a half behind him with symptoms. We tested for Covid but that was negative and I was just exhausted and had no appetite and all I wanted to do was sleep. I did run a low grade fever, which for me is a big deal as I typically run in the 97 degree range temperature wise and there's only been a handful of times I've run a fever in my life and that was when I was REALLY sick and this turned out to be one of them. I remember I had slept most of the day on Wednesday the 16th and then I remember waking up and getting out of bed in the middle of the night to go to the bathroom and the next thing I know, I'm coming to on the bathroom floor with Jord on the phone with 911 and his hands cradling my head as I murmured, "What happened", very confused. Apparently, I got into our bathroom and passed out. Thankfully somehow I slid down our shower and that propped me up so I didn't hit my head when I fell. Jord heard me fall and rushed in to see what happened and apparently I was just open-eyed staring unresponsive for 3-5 minutes. Somehow myy big toe got stuck under the door to the "water closet" as they call it here in the South when I fell and completely ripped off my big toenail--thankfully I didn't feel it at all, but it was definitely sore for a LONG time and took months to grow back. Anyway--the next thing I know, the paramedics are coming in and start assessing me and suggest going to Huntsville hospital in case it was cardiac related. My blood pressure was low, as well as my oxygen sats, so they immediately put me on oxygen and then they had to lift me up into Jordan's gaming chair that rolls on wheels because they couldn't get the gurney into where I was. They rolled me through the house in that and then lifted me onto the stretcher as they placed oxygen on me. It was early morning on the 17th and Alabama decided to have an ice storm so it was FREEZING and I remember being so cold because I didn't have socks on and my pj's weren't much against that frigid air, even for the short trip from our front door to the ambulance. Jord called his Mom to let them know and he rode in the front of the ambulance to the hospital. They started an IV and I just remember hearing the crunch of the ice as we very carefully navigated the icy roads slowly to the hospital as I watched the icy streets out the back window. I was in for another freezing cold time from the ambulance bay into the ER. From there, I don't really remember the order of things, but the main thing I remember is being in a room kind of isolated from everyone else and all I wanted to do was sleep and nurses kept coming in to wake me up and tell me to take deep breaths because my oxygen sats kept falling below 90% even with them pushing 6 liters of oxygen (that's a lot for you non-medical folks). They ran a bunch of tests and my white blood count was at a 1, which is extremely low (normal range for adult females is 3.6-11) and they also determined that the culprit to our sickness was the swine flu from 2009...they had to send out special tests to figure that out and were shocked. We still have no idea where or how we got it, but catch it we did, and it did a number on me. God provided so well for us during that time--He gave us an incredible hospitalist--literally the best one I have ever had...which if you know me, you know that's saying a lot because I've had a LOT of them over the years. He listened to Jord advocating for me with all my drug allergies and adverse reactions and even though I was in pretty serious condition, they took things slow instead of throwing a bunch of medications at me, which never goes well. I ended up seeing a hematologist to add to my list of specialists I've had in my life as my other blood counts were low too, but I can't remember the numbers off the top of my head--but this indicated that I was in the beginning of sepsis. The Mayo Clinic website says, "Sepsis is a serious condition in which the body responds improperly to an infection. The infection-fighting processes turn on the body, causing the organs to work poorly." Sepsis can go from bad to worse very quickly. Thankfully, it didn't get worse for me, and the hospitalist coordinated the team of specialists very well to help me. They said I had pneumonia as well, but because I had never been to that hospital for my lungs, they could have just seen my baseline scarring/damage and called it pneumonia. Regardless, I was very, very sick. Due to the time of year I picked to have this adventure, the hospital was full so we stayed in the ER room for the first couple of days I believe. Jord sat in the chair by my bed most of the time, which caused him to go downhill when he had started to feel better, because he obvioulsy had it too since I got it from him. I slept through most of that time and even the first day or two once I got into a room on the floor. Once I got to the floor and they had a treatment plan, Jord was able to go home and get some rest. The roads were still super icy so it was good that I was sleeping and not really up for visitors because it was not very safe to drive. I was so weak and just getting out of bed to go to the restroom caused me to de-sat (when your oxygen saturation goes below 90%) even with oxygen. Needing oxygen was new to me--it's a totally different thing than my lung funtion that I talk about all the time. My lung function prior to this had climbed back up to 67% after I got my new machine for breathing treatments last year. They didn't do any pulmonary function tests while I was in there so I don't know what they were then, but when I followed up with the PCD clinic at UAB a few weeks after I was discharged, my lung function had plummeted to 51%. They considered re-admitting me to UAB, but decided to hit my lungs really hard with extra treatments and inhaled medications at home first and I was able to avoide another hospitalization which I was thankful for because my Mom was flying in from AZ to celebrate my 40th birthday. My hospitalization ended up being a week total in Huntsville. They were reluctant to release me, but because they weren't familiar with my lung disease and treatments, I actually could help my lungs better at home once my blood counts had started to come back up, albeit very slowly. Once again, the hospitalist was amazing in advocating for me because he understood that I had better machines at home than what the respiratory therapists were able to do for me there. This is why the PCD clinic at UAB is so critical for me--because PCD is so rare, hospitals are used to normal patients and I don't respond like normal patients do. The hematologist was also incredible and her caveat to releasing me was that I followed up in a week to get labs drawn to make sure my blood counts did indeed get back to normal. I also went home on 2 liters of oxygen 24/7, which was a whole new experience being tethered to something--and it was amazing just how quickly I got short of breath. Whew--so that was the very beginning of the year lol, but it has had a significant impact. Like I said above, I followed up with the clinic and was able to avoid another immediate hospitalization. They directed me in slowly weaning off the oxygen as well because the sooner I was able to come off, the better it was for me long term so my body didn't grow to depend on it unneccesarily. I think in total it was about a month I was on oxygen and that was definitely eye-opening as far as insurance and getting bottles of oxygen so I could go outside the house, but that's definitely a post for another day. Though I was able to come off of the oxygen pretty quickly afterwards, I kept waiting for my body to "bounce back"....and waiting and waiting. My lung functions did go back up to the high 50's, which I'm very thankful for, but it's still lower than what I had been. Although I came off the oxygen relatively quickly, I would still de-sat with walking up a slight incline or any small exertion so we had to still monitor my levels closely. The "bounce back" I was waiting for has never really come and we are about to close out the year. I was hospitalized in July for a "typical flare-up" and when I was admitted my PFT's were at 47% which was an all-time low for me. Thankfully, after 3 weeks of IV and inhaled antibiotics I did bump back up to 63% for a short season and at my last check up I was down a little to 56%, so the high 50's seem to be my new normal. Another thing that is just different is getting short of breath with exertion. I'm not de-satting (not sure that's how you spell that lol) anymore, but if I go up a flight of stairs, I either have to pause at the top to catch my breath or walk slow until I can get my breath, which I never experienced, even with hospitalizations in the past. Something my siblings have always teased me about is how fast I walk and when I flew out to AZ in June, I was very thankful I didn't have any close connections because I cannot walk that fast anymore, especially carrying a backpack through the airport. I've been very much aware of an old meme that we used to pass around one of the PCD facebook groups, "My new normal is constantly adjusting to new normals." The other thing that has been affected significantly is my energy level. I will sleep 12 hours and then still only have the stamina for several hours of activity. Due to this significant change, Jord and I are actually selling our house and, Lord willing, moving into the same neighborhood as his parents so that it's easier for them to help me when I'm so low on energy and then as they age, it will be easier for Jord to help them as well. That was a hard decision, because we love our home, especially our backyard, but we prayed about it and we know it's definitely the right decision, so we are just waiting on the Lord's timing and direction. :) The celebrations this year were my 40th birthday in February, Jord's 40th birthday in July, and our 20th wedding anniversary on December 3rd. For my 40th, my Mom flew in and Mom T. hosted a wonderful birthday party for me at their house and invited friends from church so Mom finally got to meet everyone I talk about all the time. It was such a wonderful blessing, especially since I was still in the beginning of recovering from the after effects of the swine flu and a sweet time of fellowship. Jenn and Jeremy, our best friends, flew out from AZ for a few days to help us celebrate Jord's 40th birthday in July and we had a wonderful time as well. Then for our 20th anniversary, we went to the Gaylord Opryland Resort in Nashville and it was AMAZING! It was decorated for Christmas--there are three HUGE atriums that have over 50,000 live plants with walkways and waterfalls and water fountains and a Christmas tree made entirely of poinsetta's. We went on a carriage ride one night and they had a huge Nativity set up out front and a loudspeaker read Luke 1 and 2 out loud. It was a really sweet time of just resting, relaxing, and talking about all that God has done over the last 20 years (crazy that it's been that long!!) and His incredible faithfulness to us, and looking forward to the future that He has for us. The end of May and beginning of June were very difficult for us...May 29th we had to say goodbye to our dog, Roxy. She was our 11 year old Red Heeler that we got in Montana and she was Jord's special girl. She started having difficulty getting up on the bed and you could just see in her eyes that she was in pain and it was time. Mom T went to the vet with me and we played hymns on my phone as I sat on the floor with her and they sedated her and I held her until she was gone. Those that have read this blog in my sporadic writing over the years know how special our dogs are to us and have seen lots of pictures of Roxy over the years. She is definitely missed. Then on June 10th, my sister called and I immediately knew something was wrong, as she gets the words out, "Dad's gone." Our Dad, or "bio-Dad" as we called him to differentiate between our step-Dad who we also call Dad, had passed away unexpectedly. We knew he wasn't in the best of health and wasn't taking care of himself so it was sort of expected, but you're never truly prepared for when it comes. I was able to book a flight and headed out to AZ to help as best as I could with my lower energy and to be there to begin the grieving process. Mom and my nephews picked me up from the airport and when we got to the house, my sister pulled up from going through things at Dad's and she said, "I found the best box."...it was a box full of pictures. Over the next couple of days in the midst of doing all the things that have to be done, we sat and looked through pictures and laughed and cried. Dad had organized all the pictures into envelopes with names on them and along with pictures, there were other keepsakes. He and Mom had divorced when we were young and in my envelope I found letters I had written him and a report card I sent him--I didn't know he kept all that. The way things worked out, I wasn't able to extend my stay in order to be at the Celebration of Life, so we spread some of his ashes around a tree with my family for me to say my goodbye and read Psalm 23 and played a hymn. There's lots more that could be said, but it's getting late and this has become a pretty long post already so thanks if you are still reading lol. :) The last year and a half have been filled with lots of things--good, bad, exciting, hard and all in between. Life is hard, but God is good. As we approach Christmas, may we remember the "reason for the season"--God chose to leave the glories of heaven and clothe Himself in human flesh--He was born as the babe in the manger, but he didn't stay the helpless babe...He grew into a man who lived a perfectly obedient life that you and I can never live and died on a cross and three days later He rose again to pay for your sins and mine so that we might have eternal life WITH God. Oh what grace He has poured out for us--without Him I don't know where I'd be. Friends, life is short, death is sure--are you hid in Christ? And for us that know Christ--what hope we have because of our mighty Savior! He is trustworthy and His promises are sure! Merry Christmas and a Happy New Year! In His Mighty Grip, Rachelle