It’s funny how I’m able, even if it is just for a split second, to forget that life has changed for me. It can happen when my time on the elliptical is up, and I try to walk away only to be sharply tugged back by the hose stuck up my nose that’s connected to the tank on the floor—oops. Or when I’m about to drive away from my house only to realize I’ve forgotten something, so I run back inside to get it only to be left gasping for air. These types of things happen on a regular basis. I actually like to think of it less as a part of my overall “brain fog” of forgetfulness but more of a sign that on the inside (as in inside my soul, not my body…lol) I’m still my normal self doing normal things.
The next couple of months well represent the old me and the new me coming together to form a pretty, well-packed schedule.
Yesterday, I hosted another movie night. It was great fun to get with some fun friends and eat, drink, talk, and, of course, watch a movie. Tomorrow my husband and I will be enjoying a night out at a black tie event – and I love dressing up. This time we have gone all out with a fabulous gown and accessories and an appointment for my hair and makeup to be done. This will be the only time I’ve been pampered to this extent since my wedding day, and I’m really looking forward to it, especially since my Prednisone weight gain has pretty much meant I’ve been wearing yoga pants Every. Single. Day. On Monday, a very good friend of mine will be visiting for several days. We haven’t seen each other in a number years and she will be my first first visitor since we moved last August.
On Thursday my five year old and I will fly off to North Carolina. She has the honor of serving as the flower girl in my cousin’s wedding. She is looking forward to the flight. I’m looking forward to spending that much one-on-one time with her and seeing so many family members while celebrating my cousin’s marriage. She hasn’t been on a plane since she was five months old, so for her it will be like the firs time. For me, it will also be like the first time, even though I’ve flown all over the world. But, it will be the first time I’ve had to rent a portable, oxygen concentrator so that I can have it available to me during the flight if needed, but especially in the airport during our numerous layovers. It is the first time I’ve had to order oxygen and hope that it has actually arrived to my hotel room before I get there, so I have plenty of tanks. It will be the first time I will take antibacterial wipes to wipe down all parts of my seat and anything else I might touch. It will be the first time I will take a flight wearing a mask for further protection from infection. Airports and airplanes are “infection” places. Everyone knows that. But, I’ve never been one to really take notice of it. Now…, I’m a little bit terrified. Picking up a simple virus or bacterial infection that my body may have fought off and won without me even noticing before could be a severe set back and scary ordeal for me now.
As soon as we return, I hope to celebrate my birthday in some small way with my family (turning 39). And then I will need to restart my Prednisone taper, which has been put on pause at 5 mgs as I get through these upcoming events. June is yet another mix. I’ll be hosting another old friend, but one I haven’t seen in 15 years, and his wife. I also will have yet another flight— but this time with my whole family as we meet up with nearly 100 of my other family members for a long weekend of a family reunion. (More concerns about airports, airplanes, rental car, hotel and all the activities I want to be involved in.)
Medically, June is a pivotal month. Prior to the family reunion, I’ll be getting the 1st chest CT since my original one in November. This will show whether or not my lungs have improved, stayed the same, or, god forbid, gotten worse. I’d like to think the likelihood of them being worse is slim, given the fact that I have noticed improvements. However, I know most, if not all, of those improvements are due to the inflammation coming under control and doesn’t mean my disease isn’t slowly worsening. My last lung function test showed some confusing results, and I will be getting yet another one to see if it is the same, better, or worse than the last. I’ll also be getting ALL my labs that are needed to show on that end…better, worse or the same.
Not only will I be meeting or talking by phone to my usual local specialists – right after the reunion, I’ll be traveling to UCSF to meet with a physician from their Interstitial Lung Disease program. The purpose of that visit is multi-layered. First of all, I’d like them to look at all of the above medical tests and by comparing to my others help determine if we are to stay the course on my current treatment plan or make a change. Also, it is important to both my local physicians and me that we have some specialists on our team that have seen more cases like mine than they have. They will also be privy to any new drugs or trials or treatments that my folks may not know much about, and they can serve as an important resource for my local team. For my future,UCSF performs lung transplants, if I am ever in need, it would be prudent to make sure physicians there know me well. My particular disease can disqualify me from receiving a transplant (since it attacked these lungs, the assumption would be that they’d do the same to new ones). So I’d want some folks on the inside fighting on my behalf if my treatment plan ever came to that.
And just when you think I’d had enough of doctors, I have knee surgery scheduled for the 29th of June. Turns out I tore my meniscus in my left knee. I would have liked to have had the surgery sooner, but due to the flights, my surgeon didn’t want to further increase my risk of blood clots, so we opted to wait until I was staying on land. We don’t really know what my recovery will look like. My body now heals slower than others. So even though most people are off crutches in two to three days, he told me to prepare for a possible two weeks. And even though most people are “back to normal” in six to eight weeks, he told me to plan for a possible three months. How my knee surgery recovery will impact my ability to work out and stay moving for the benefit of my lungs and general well-being is yet to be known.
Soon after my surgery, yet another good friend is visiting. She will be my first friend visiting from the town we moved from. She does happen to have a cousin that lives there who happens to have just had a baby, but considering I am constantly trying to entice my friends here based on the fact that I live in a vacation town, I don’t care WHY they come visit, only that they DO come!
At the end of July through the first of August, my mom and one of my aunts are coming for a visit. I’m hoping I can also join them on a trip during that time to visit my brother and his family. He only lives a few hours from me now, and I still haven’t been able to make it there. I used to be willing to drive ten plus hours with multiple children on my own (even while hugely pregnant) and didn’t blink an eyelash at the idea. But the old normal says I need to jump in the car with my kids and visit my brother – the new normal says that’s easier said than done, and I keep having set backs to making that happen. I’m hoping with multiple adults around to help if need be that nothing stops that plan this time.
I think focusing on all the fun I have planned over the next few months will so far outweigh anything else that I can almost forget there even is the word “new” in front of the word “normal.”