Well we called it didn’t we? Tune up time! Tuesday, August 4 Danny checked into the hospital and began the tune-up journey. Since our blog’s inception we have been through a few tune-ups. Some in new hospitals, some with new issues, and we have shared the reality that hospital days our a part of our world. The hospital is never good, it is never easy, and it is never to be taken lightly – but all things considered I think we have gotten the hospital thing down and become pretty good about making it part of the routine.
Danny has had 30+ years of practice and although I am no pro – I too have logged some good hospital time in my decade of following that boy around. During our first year of dating it was six months before I even saw Danny do any hospital time. He was fairly healthy and the tune-up was something that was on a to do list somewhere. Every 6 months he had gotten pretty used to needing to be admitted for a course of IV meds. Often the medication he uses in his breathing treatments can be the same found in the IVs – this extra method is added for a chance at a really strong cocktail to kick whatever bug is taking up residence in his lungs. Plus a few days of resting, strategically planned breathing treatments, and following of his stats and blood levels is a good thing. When someone has a degenerative disease a few extra eyes on them is never a bad thing. So when Dan was feeling a little “junky” in his breathing he would schedule a tune-up.
Disclaimer – this is not to say there weren’t times that landed Dan in the ER or family vacations that had to be rescheduled. Truth: CF is nothing but unpredictable – we will never say that it was manageable – but the options for dealing with it were plentiful. So my first year tune-ups were just a part of the deal with Danny – like carrying enzymes in my purses for him or his extra heavy coughing spells.
About two to three years into dating things changed a bit. The bugs were growing and no matter how strong the meds, they would not quit. Each CF patient has their own, special made breed of infections (aka “bugs”), so there is never a easy roadmap on how to treat someone. There is trial and error to see what works. There is a constant change in meds to try and switch it up and basically confuse the infection – surprise it when it is least expecting a new med. As a result, tune-ups went from a few days to sometimes weeks. There could be a little effort with little result. With these circumstances, we grew, we adjusted and we learned to keep trucking.
The year we got married the reality of Danny’s bugs not only being stronger, but having caused long term damage and reduced his lung capacity permanently set in and transplant become a common word in our vocabulary. This was hard and my first true introduction that our life will be different. Thanks for faith, thanks to family and friends, but most of all thanks to all consuming – head over heels, love – my happiness would always overcome. Yes, I worried what our future would look like, if I could be strong enough of wife that Danny deserved, and if our future marriage would be strong enough to face this obstacle. However the worry absolutely never out weighed the happiness or the love or the pinch me moments. When Danny said “my wife” in a restaurant, on a call, or when introducing me to someone – the butterflies, the “I can’t believe that’s me” , the shivers that ran down my spine told me there was no where else on this planet I was supposed to be and no one else in this life I was supposed to share the world with – that we continued forward. Life moved on.
Since that time we have had some serious ups and downs and Dany’s health has changed a lot. One of our a fall seasons we were pretty convinced we were moving to NC and going to be listed on the transplant list within the next few months and then we had a spring where we moved out on our own and decided to expand our family by 4 paws as everything seemed stable. It can feel like things change with the wind- or at the speed of a snail. And with this stop and go, with this start and halt, with this change direction or change of course – we struggle. We struggle with our own fears, we struggle with shared fears – we have to fight to be happy. But the truth of the matter? I have to really fight to be happy.
By nature I am a positive person, in faith I am a true believer who knows God and His plans are stronger than I – but in my own head, I struggle with anxiety and OCD. Let me be clear – this is not a result of my current life, this is not because of Danny. I have struggled with these things most of my life, but over the past 8 years, it has become increasingly more of a large part of who I am….. my reality to face – to fight.
The desire to be perfect, the thought process that I can do it all – or should do it all – the need to make people believe that I am strong enough, that my life is just what it is and I can face it without a fear in the world has been a huge reason to hide it. That coupled with the reality that even in my darkest moments (panic attacks, wanting to hide away from the world, going to the doctor because I felt just down….just off….or worst of all like I could scratch off all my skin), there are so many who struggle worse than I do. So how can I speak on this topic? Why not just keep it to myself, between my husband and myself (and my circle)? Two reasons – one if I say aloud I have to work on my happiness, if I acknowledge things that help or just show others they are not alone in feeling this way- doesn’t that make the world a little better of a place? And two – in our life everyone knows that we have to work hard around Danny’s health and therefore I am the caregiver. But the truth is that Danny has to work really hard to be a caregiver too.
All of this leads up to one big explanation – this tune up has been a hard one. Originally planned to be a few days in the hospital turned into weeks and talks of up to a month. The first few days of meds that were thought to kick start Dan’s immune system and get him ready to go on home IVs did minimal good and we had to commit to a much stronger med route that would land him in the hospital for awhile. The first Saturday in the hospital we were awaiting the final test result updates and paperwork to head home, only to hear there was minimal change and the stay was extending. The roller coaster of it all can be hard – but this time for me it was something else. Danny stayed in good spirits and was positive in committing to what needed to be done – yet I felt completely blind sided and depleted. I am always lonely when he is not at home – but the silence in my world that was left this time was defining. Several days I found myself just sitting and staring, or crying then angry – I could not shake how mad I was that my little world that I had just spent a month relishing was completely stolen away, even after I had been so grateful for it – cherishing the good moments. Didn’t we deserve more of them?
Over the last few months I had worked so very hard on not jumping to the next thing in life, not worrying what we should be doing or what we are not doing, and instead learned to give to God my worry and wonder and give the best version of myself (grateful for my life, soaking it all up) to the people in my life. I had truly committed to the way of thinking that if you have faith it will be OK – and then this…..just a month after our tough stay and we are back. If you follow me on social media you know, I was hurting, I was mad and often unconsolable. My husband, family, and friends worked so very hard to understand why and to remind me that although hard – this all could get better quickly too – why was I giving into a pity party? Nothing had been finalized, no hope had really been lost – my life had to shift, my world had to stop in a lot of ways – but not forever.
There are so many reasons, so many theories, and countless suggestions as to why this trip seemed to knock me on my ass. And I am fully aware how terribly selfish it sounds to say that when I am not the one struggling in the hospital. However I had to learn to come out the other side. I had to fight for my happiness, I had to change my daily focus, my mind speak, my priorities, and how I treated to myself to get through this and although not a 100% – fighting this fight is also part of our story.
Today – 2 weeks to when Danny was admitted – things are looking up, he is feeling better, and there is a chance the intensive round of IVs could make him even stronger than expected. We are seeing opportunity to return back to our day to day life and grateful this was not the trip that kick started true transplant discussions or a life that would have to be lived at the hospital. And while all of this news comes in Danny also pointed out that I was able to fight to bring myself back to better too. We are in this journey together and one of the hardest parts is not always been able to be the 100% spouse you want to be – CF, anxiety, human nature – but learning to be proud of the other person, learning to love them despite, and saying prayers for the here and now and the future together – it has gotten is through and that is the truth. This was not how we wanted to spend the last 13 days, but it has taught us a lot.
Seeing the other side of this mountain, we not only want to get back to enjoying the little things in life, we also want to continue to grow from what we have learned and share the message of fighting for your happiness and enjoying where life takes you. Over the next few days, I will share a few of my efforts that really helped through this hospital round. Maybe it will help someone, maybe it won’t – but it is important to recognize that happiness can be a struggle and I am proud of everyone who has to live with anxiety and still wants to fight through it. I pray for their strength and for the patience and love of those who don’t understand it, but choose to walk along someone with that struggle.
And since I have been so quiet on the blog front – a quick Shiba update: Quinlan has been a MESS without Danny. Moody, grumpy, and has developed hot spots (a stress induced rash) – all of the Bessettes have been feeling this trip….. but after a specialy approved hospital visit on Saturday – even he has turned a corner. Maybe in the end – it was a tune-up for us all.