I am constantly learning. Every day and every experience is still new to me. It’s fabulous for living in the moment, but it also keeps my mind racing as I constantly exist in “problem solving” mode. Problems, you may ask? Simple things like: how far is the walk to the bathroom? Is there an outlet close for my POC (portable oxygen concentrator)? Is there a waterproof chair I can use in the shower so I don’t wear myself out just getting clean to start my day? I dropped something on the ground- is it worth the physical discomfort and lingering shortness of breath to bend over and pick it up or can it remain there for the time being?

My trip to Florida was my first time flying with my POC. Since I can’t be separated from my oxygen, I couldn’t use the body scanners and instead received a thorough pat down as well as a complete explosive check of my wheelchair. The process was very easy from my end and the officer was both polite and patient. Boarding early was a huge help, as it let me get situated without any extraneous standing and allowed me to get the pieces of my POC easily accessible. During the flight, I wore both my O2 and my mask (at the recommendation of my nurse advocate) while watching my battery closely. I was surprised how very dry I became during the flight, and when I tried to turn my POC to a lower setting to save the battery I found myself getting light-headed, so that experiment was short lived. This does make sense though, as when the plane is at cruising altitude, the air is thinner, so I’d need MORE oxygen delivered to stay at my same levels.

My wheelchair was conveniently checked at the gate and waiting for us when we got off the plane in Tampa. The tram ride was an adventure as we couldn’t find the brakes on the wheelchair but after reclaiming our checked bag, we found we had to go BACK on another tram to the rental car counter. Unfortunately, managing the chair, the carry-ons, POC, and the checked bag was far too much for Mama, so I put all of the smaller items on the wheelchair and tried to walk, pushing it myself and using it for support as a walker. In the end, this was not a sustainable method for moving any great distance. Using that “problem solving” I discussed earlier, we rigged up a way for Mama to push me while we jointly wrangled the bags. Seeing our fatigue, the kind man at the rental counter gave us an upgrade to a very comfortable and snazzy SUV.

After a short ride to our friends’ home in Largo, we greeted them and went inside just in time for my POC’s battery to die despite me using the car charger during the 30-minute drive. Thankfully I was now able to plug into the wall outlet, but I felt like that was cutting it too close. The advertised “9 hours” of battery life on the $600 extended battery is running closer to 4. This also became an issue several days later when Mama and I went to the pool for a spell. I found that being in the water allowed me to stretch and move in effortless ways that I have been unable to since my diagnosis. Despite wearing my nasal cannula and propping my concentrator nearby to keep it dry, I physically felt the most normal that I have in months. Realizing that my stress was low and my weightlessness allowed me to relax my breathing, I turned down my O2 flow – again to save battery- but we were both sad to leave when, after a mere 3 1/2 hours, I was down to my last battery bar. Again, it was a race against the clock to get out of the pool, get dressed, secure everything we brought and hobble back to the car before the battery ran out.

Lessons that this trip has taught me so far that I will use frequently:
*In order to be at an event or away from home for any length of time, I will require 2 more extended batteries. The four should be able to get me a solid 12-16 hours of “normalcy.” The range is necessary because it changes based on my level of activity. If I am walking, standing, or speaking in long sentences, I must increase my POC’s oxygen output and therefore shorten the battery life. As the point of the POC is to give me as normal a life as possible while I am able, I am typically doing some combination of these things to most thoroughly appreciate each experience.
*My typically challenging mornings have been significantly easier since coming to Florida, and the time it takes me to feel “normal” and ready to leave the house has decreased by 60%. Whether this is due to the weather, the temperature, or the propped-up way that I am sleeping remains to be seen. I’ll delve into these variables further in the coming days.
*Just because I have a handicapped tag does not mean that there will be any handicap space available. Funny thing about Florida- there is an abundance of senior citizens here and many of them also have handicapped placards. That means there are more of us vying for spaces. Getting dropped off nearest the entrance and waiting for my party saves a lot of energy and prolongs the enjoyment of my time out.
*Similar to juggling the four batteries, if I am going to do anything on back-to-back days, I will require an independent charger. Currently the batteries only charge when attached to the POC and the POC is plugged into the wall or a car adapter. This process takes 8 hours. If I had a long day out at faire, for example, I couldn’t go to a concert or food truck festival the next day because I wouldn’t have enough time to charge the adequate number of batteries overnight. This gives me pause when looking at my calendar and my bucket list of things to see/experience.

I’ve only been in Florida for three days so far, but they have been just lovely. The adventure has been enlightening, relaxing, and has offered some welcome reconnections. We are still coming up on the BIG reason for coming south and that will culminate in a weekend of righteous ridiculousness as the Righteous Blackguards play the Lady of the Lakes Renaissance Faire in Tavares, FL. Based on my recollection of the fairegrounds, it will be a litany of challenges between parking and getting to the proper stage. What I walked last year in 4-5 minutes, I am preparing to spend 45+ minutes accomplishing. I will report on my actual progress on my Facebook and Instagram pages over the coming days.

Thank you for following along, and always for offering your own tips and insights on how to cope/adapt.

It has been a rough few weeks. Don’t get me wrong, I have had some amazing experiences and created some fabulous core memories. I am talking about physically, emotionally, and mentally the past few weeks have been very trying.

I was extremely fortunate when I first got home from the hospital, despite my extreme discomfort and shortness of breath, I was not in physical pain. Unfortunately I can no longer say the same. I am in constant back pain and have a headache strong enough to effect everything about 60% of the time.  I do not believe I have had a rejuvenative night of sleep since mid-August. Added to that, I can’t seem to nap anymore even when I’m fatigued in the middle of the day.

This is coupled with the fact that the nights are cold and winter is coming. The cold has a significant effect on my breathing, and also can cause my back to seize up. I also know it’s just a matter of time before my Raynaud’s causes significant pain in my hands and feet. I will literally start planning my days around the temperatures and climates that I must endure. That sounds more dramatic than it is, but things like a grocery store, a doctor’s office, or a library –  I am always thinking about the temperature inside and what I have to wear to endure outside.

I am doing my best to stay focused on the things that I am looking forward to. That has always been a huge motivator for me, but now that anticipation is heightened as there are many days where I can only manage the energy to do one thing. That one thing is extremely special to me. First up is my long anticipated trip to see the Righteous Blackguards at the Lady of the Lakes Renaissance Faire. Mom and I snagged $99 airfare round trip from Atlantic City, and Spirit has been super easy to work with for my portable oxygen concentrator and checking my wheelchair for free.

I am admittedly very nervous about how I will get from the parking lot to the stage where the Blackguards are performing as the faire is in a beautiful, rustic setting in the woods, so a power chair is out and I do believe it is beyond my capacity to walk of my own accord. But as I see it, I’ve got a week and a half to figure that part out.

The other thing I am most looking forward to is reuniting with dear friends. I have been blessed to have quality time sipping tea and reconnecting with some of the most genuine and authentic humans that I have been fortunate to know, many of which I have not seen in a decade or more. As someone who values human connection so significantly, these reunions have made my heart soar. I sincerely hope that sharing my journey and letting the world know what I am going through currently is an avenue to continue these reunions and bring meaning and joy to my life. If YOU are someone who would love a catch up and porch sitting as much as I, please message me and let’s get something on our calendar so I can ANTICIPATE our reunion!

Had the pleasure today of meeting two rheumatologists who are on my team, and honestly it was such a good experience. Admittedly I feel like It takes a special kind of person to want to become a doctor, and then go into rheumatology. It seems like an underappreciated specialty, one of those things where no one thinks about it until they need it. Compared to some of the other specialties, it definitely isn’t sexy: your body attacking itself.

I learned that as of today, my official diagnosis is: Interstitial Lung Disease with Autoimmune Features. I tested positive for several different autoimmune markers, but don’t have enough symptoms or enough positive tests in any one category to give me a diagnosis of a specific autoimmune disease. I feel like giving me a label that isn’t accurate just to put me in a box doesn’t make sense, so I’m completely comfortable with this. The doctor said some people don’t know how to process having symptoms with no name. I figure, I’m dealing with the mixed bag of symptoms that life gave me, regardless of whether they have an official name. Heck, I’ll probably come up with my own name and it’s not like me to fit into a “box” or “label” anyway.

As expected, they are going to significantly increase my immunosuppressants, and we will be watching for any side effects. From talking to the doctors and listening to the stories from the ILD Community online, some of these medicines have very unpleasant side effects. So before we crank up everything, they want to make sure that my body is strong enough to withstand these new doses. I’ll be taking a pretty thorough personal inventory daily of any new changes and stay in frequent contact with the team at Cooper.

In my opinion, the best thing to come out of today besides a more thorough understanding of what my body is going through is the news that according to my rheumatology team, I would actually be an excellent candidate for a lung transplant. They added several caveats that they are not pulmonologists, so ultimately the timing, need and viability of that is up to the ILD specialists and pulmonologists, but my autoimmune condition does not prohibit me from being a lung transplant recipient. If anything, they felt that my age and overall health otherwise made me a very strong candidate. That is music to my ears! The people whose stories I have followed thus far who have had lung transplants are very pleased with the results and their new lives. Admittedly, the recovery journey appears to be extremely painful but undoubtedly worth it in the end.

So, in a nutshell- a good visit with the doctors, a solid plan moving forward (barring any complications my body throws us due to new meds), and some optimism for long term treatment. I count that as a win- unlike the picture up above that maybe should have been retaken to make me look less insane!

Some things are timeless… And some places are timeless. I am lucky enough to hail from one of those places, Lancaster County, Pennsylvania.

My mother and I recently took a trip back, it was a 3-hour drive on a Sunday afternoon when the Eagles play at 1:30 at home, but it was wonderful to see so many familiar faces. Amazing how everyone looked both the same and different simultaneously. I definitely stuck with the older crowd, there was “walker” parking and a collection of canes! I was even gifted some snazzy new canes so that I can show off my style while also showing off my independent walking dexterity.

I say the walking part tongue-in-cheek because the behind the scenes necessary to orchestrate the oxygen delivery and tanks just to make this drive is mind-blowing to me. It was honestly such a short visit, about 2 and 1/2 hours of actual quality time with family, but when you add in the drive and the planning, the actual outing took over 10 hours of energy. 

I am very much looking forward to the next stage in my recovery where I am able to use a portable oxygen concentrator and remove the toxic oxygen delivery company from my life. The whole process has honestly made me want to start either an advocacy group or a non-profit to help other people who are going through this. I have joined several groups online, and it’s amazing how many people are suffering in silence at home and their mental health is deteriorating because they cannot leave. When you cannot breathe, you cannot leave. It is very hard to understand until you are living it.

If I had my way, I would gift everyone with breathing difficulties these exterior lungs to allow them the freedom to continue to explore their world. But for now I digress and all I say is this: as you age, ask those important people in your life who were a formidable presence as you were growing: ASK! Relive your memories together and now ask them how they remember it. I find it fascinating when you can take a core memory and further understand it through the lens of the person you have become, and with the additional information of the other people who were present during that pivotal time in your life.

But just as much as I want you to indulge in life’s sweet memories, I hope you’ll also indulge in the dessert table. Because some things in life can be so small but bring such monumental moments of Joy. My joy just happens to be dipped in Nutella.