So much has happened in the last month: a debacle by my oxygen company, three flights, a wedding, and mini family reunion, three more flights, one flight delay due to missed connection, blood work, chest CT, my first fever, long-lost friend and wife visit, pulmonary function test, vomiting children, and packing for the big family trip to the once in five-years family reunion.
So I will break it down into several sections.
Medically speaking, things are going quite well for me (all things considered). My CT showed some pretty dramatic improvements. My Pulmonologist was very shocked and excited to see the results. As he said, more often than not with ILD, good news is that the disease progressed less this time than last, but in my case there was an obvious improvement. I wish I had thought in the moment to snap a photo of the two CTs side-by-side. Even a lay-person could see the difference.
My blood work had lots of results that are generally abnormal back to normal now that I’m on a very low dose of Prednisone (currently 2 mgs with plans to be off of it by the end of the month). However, there was one blip in the screen: one of the labs that I only get quarterly, which indicates whether or not my muscles are currently being attacked turned up abnormal. This is the first time it has been that way since treatment began. The level of abnormality at this point was minimal, so it is just something we will add to the monthly watch list. If it does continue to rise, we will have to change or add treatment to my regiment, but until then, I will hold off any worry for this particular topic.
My pulmonary function test was slightly better than my last one three months ago. Nothing was so improved that it made much of a statistical difference, but I’ll take any amount of improvement I can get.
This is excellent news, but not so excellent that it means I’m cured, off oxygen or have nothing more to concern myself with. I’m not trying to end on a negative here, only wanting to clarify based upon some comments and questions I’ve received since getting these results.
So since I already wrote on this topic as it happened on a private Facebook group for those with ASS, I will simply cut and paste here so that you may enjoy my level of anger and frustration.
“Ok – I just need to vent here. I had a plane trip planned in May and one upcoming this month. I ordered my backpack portable oxygen and the tanks to be delivered to my hotels well in advance.
For my first trip, I was called by the manager the day before my trip to inform me that somehow nothing had been ordered for me. I totally broke down as I imagined a 12 hour plane and airport trip with my five year-old without any oxygen. They got it together to get me some. But it wasn’t the backpack I had wanted, so I was left toting around this huge machine all over the place. It sucked but was doable since I only had one kid with me — and the oldest one at that. The next trip I will have all three kids with me. Sure, my husband will be there, too, but in the case of trying to get to one plane to another, we may both need to carry a kid. And how the hell am I suppose to do that without a backpack???
Now I’m obvious in constant contact as to the status of my backpack oxygen for my trip on the 17th. The lady just called me back and said, “I just heard from the company, and they said it has a shoulder strap or you can pull it.”
WHAT PART OF I WANT A BACKPACK DO YOU NOT UNDERSTAND?!?!?!
She then notices that she requested one machine, and they wrote back about another. I told her, ”I don’t give a shit what kind of machine it is – all I care about is that I can carry it in a BACKPACK!”
Ugh…I really don’t feel like I ask for much. I want my parking placard (mostly so my oxygen tanks are as close as possible) and to be able to carry said oxygen in a backpack. I try my hardest to provide a normal of a life for myself, my children, and my husband. I don’t understand how the one company that is meant to help me doesn’t seem to appreciate my actual needs. Yes, breathing is the most important thing, but it isn’t everything. And I shouldn’t have to have even more burdens when backpack oxygen actually exists in the world. It’s not like I’m asking for a new invention.
Sorry….but I’m getting so fed up with this idea that I should just settle for whatever and be grateful I’m alive and take whatever I’m offered as if I don’t deserve more. I deserve more in life than just being alive.
One of my new-found online friends was out there trying to think of a solution. She suggested this doggy backpack for the portable oxygen machine. I gave her the dimensions, and she thought it would fit perfectly. I told her I was going to order it, and, instead, she told me to give her my address, and it would be on its way the following day. Amazingly, this little doggy backpack is absolutely perfect for the monstrosity of an oxygen machine. It might not be the six lb machine I was hoping for, but at least I will indeed be hands free thanks to a friend that I’ve never even met. The internet isn’t always evil after all! As seen here:
The wedding was an amazing time–from the moment we were picked up at the airport until we were delivered back there. We were even greeted at our hotel by a crowd consisting of my mom, stepdad, sister, aunts and cousins…even though we got in quite late and many of them had long travel days too.
It was so much fun visiting with everyone. My daughter was the perfect flower girl; the bride was stunning, and the reception was full of dancing and drinks. There were late nights in my hotel room gabbing it up with everyone. At one point, we squeezed eight to ten people in there. I got to spend time with my niece and nephew without the disruption of my own smaller kids. I was able to have very special time with my oldest. I spent the long weekend feeling pretty normal, despite the ever-present cannula.
FLIGHT HOME AND RECOVERY (or lack thereof)
From the time we left the hotel to the time we walked into our home, was about 19 hours. We did not travel outside the US. We did not drive. We took three planes, and the second plane we were to take departed early leaving behind four passengers from the flight, including us. We ran, and we made it in time, but the plane wasn’t there. Ugh! I could not believe they would leave a disabled woman with her five-year-old when it was known we were coming in on another flight and would have made the connecting flight. Trust me…United will be hearing from me.
Then the woman at the customer service desk promptly switched our ticket to another flight that she said would get us to our next connection in time–except for the little fact she left out: that next flight was delayed for several hours and would have left us stranded for the night at our next connection! Obviously, she wanted the irate oxygen mama out of her face! The next person changed the city we were flying to so that we’d have a chance to get home. This worked, but it did leave us lots of waiting around…Did I mention that it happened to be my birthday that day? Yeah. Happy Birthday to me!
The following day, I only barely peeled myself out of bed to enjoy some delicious Red Velvet birthday cake that was waiting for me and open some gifts. The rest of the day I just stayed in bed. Thank goodness it was a holiday, and my husband was home to help me. Unfortunately, my assistant was off for the next two weeks. Somehow, the day after I spent all day cleaning the house, but that was a fluke. The rest of the week I was a mess. I was so very fatigued, feeling a general malaise and kept getting low temps (96.something) which always feels like a high fever to me. It was awful. But this is the part that most people never get to see. They don’t see me when I’m barely hanging on. They don’t see me when I have to reserve all my energy, so I can ensure my children are fed and alive. They don’t see the fear that overwhelms me when this happens. To conjure up The Spoon Theory, it was like I was able to live on borrowed spoons, but I must have gotten them from the mafia because the interest was horrendously unfair!
In the end, I survived and I came back. I came back well enough to continue tapering on my Prednisone from five mgs, down to four and then down to three. And I did this even without my assistant being there to help.
FEVERS, FRETS AND FRIENDS
The day my freshman year high school best friend and his wife were to come to our house (He I hadn’t even run into in 15 years, and she I had never met.) I woke up feeling very ill. My throat was sore (which had started the night before, but I had hoped I was just a little dehydrated). I had the chills. I could barely get out of bed, and I wasn’t thinking straight and somehow I still had to get two of my three kids off to school, and I’d sent my assistant shopping before she was to get to the house. Thankfully, a neighbor agreed to take my oldest to the bus stop. Although I couldn’t get in touch with anyone to take my son to preschool, I was somehow able to get us to the school, and I called them to come take him from the car for me.
I got in bed and shivered and shivered. Finally, my assistant arrived. She put several blankets on me, and it still wasn’t enough. I told her where to find the electric blanket, and I had to put it on the highest level before getting any relief. Finally I slept. When I woke up, I took my temperature again – This time it showed a fever. At first I figured it must be because I was in the electric blanket. In the end, it was me, not the blanket. I’ve always been told to call immediately if I get a fever – even a low one. In an immunosuppressed person, a fever could come on long after an infection has spread and is further along it would be in a person that has an intact immune system. This aspect of my life is actually scarier to me than the disease itself – because it is so able to sneak up on you – even on the heels of your best day. Trying to come to terms with the fact that a best day could turn to the worst and potentially the start of my last day is beyond my mental comprehension, and quite frankly when I’m forced to think about it , it is overwhelming to my emotional capabilities.
To make a long story a bit shorter. They did a rapid strep test that was negative. They put me on antibiotic while we waited for the culture to come back – eventually it came back negative too, right around the time all my cold symptoms developed, so the negative wasn’t a surprise. Thankfully the fever subsided, and none of my worst fears even remotely began to come true.
Thankfully my friends were late arriving, which allowed me the opportunity to get some rest, medicate myself, and rally the best I could so that my husband and I could go out to dinner with them. They were here for other local events, so I was still able to rest up. I had a great time reconnecting with my old friend and getting to know his wife for the first time. I hope they can come back someday when they have more time to spend (and I’m not feeling so crappy).
But even now I’m still very run-down, stuffy, and I just overall feel as though I’m running on empty. But I have to just keep going. I’ve had a couple of the kids throwing up all while I’m trying to get packed for this trip and hoping that everyone and everything comes together and goes smoothly for our travel day.
And even more than that—I’m hoping that getting out of my normal environment, seeing my family, and giving my kids an opportunity to meet nearly 100 other relatives will give me the surge of energy and good health that I will need so that we can all have an enjoyable and well-deserved vacation.