I Like Toblerone Better Than Divorce
Hello to everyone reading this and all the ships at sea! I am Daniel P. Malito, and I have had Rheumatoid Arthritis for thirty-two years. Now, I am here at RheumatoidArthritis.net to share my wonderful, absurd, poignant, and amazing stories – the stories I’ve amassed throughout three decades of autoimmune illness. Now, since I’m *censored* years old, that means I’ve lived with this crippling illness as a child, teenager, young adult, and finally an adult (although some of my girlfriends would dispute this characterization). That’s fertile ground for unique experiences and feelings, and we are going to explore them all – some sad, some heartwarming, most funny, and all essential to understanding this cryptic and oft-misunderstood disease.
Some of you may know that this isn’t the first time I’ve written about my experiences living with Rheumatoid Arthritis. I wrote for The Huffington Post for a few years, and Creaky Joints for a few years before that. In addition I also have a published autobiography called So Young: A life lived with Rheumatoid Arthritis. It’s been a long strange trip to get to where I am now, and you can read about the exploits of the past ten years or so with a quick Google search. It was everything but boring, I can assure you.
A lot left to say about RA
Now, you might be saying to yourself, “well, Daniel, if you’ve been writing about R.A. for ten years, can you possibly have anything left to say?” Well, well, well, well, well. I assure you, the last ten months have been some of the most eventful of my entire existence. I must have clubbed a bunch of baby seals in a previous life because none of what happened would be considered “good,” under the traditional definition of that word.
It all started about a year and a half ago when I began to have pains in my abdomen, which were thought by most to be caused by a bleeding ulcer. After all, I had been taking pills for RA for years, and since I’m not Keith Richards, the natural assumption was that my stomach and intestines had finally said “enough!” and simply gave up trying to keep the chemicals I swallowed on a daily basis safely contained. So, after seven months of pain and not very much sleep, I had deteriorated to the point where a hospital visit was inevitable. Still going with the bleeding ulcer diagnosis, I was infused with so many units of other people’s blood that my credit score went up. Eventually, it brought my counts up to something resembling normal, and after a seven-day stay in the hospital, I was sent home.
Unfortunately, after just three days of enjoying my own bed, my body sent me several very strongly worded emails in the form of vomit. With no choice, I hit reply all and immediately returned to the ER, where I was doubled over in pain for six hours, truly convinced my organs had fallen out of my own rear end. Long story short and several thousand scans later, it was discovered that I, in fact, was not suffering from an ulcer, but instead from a tumor, wrapped around my duodenum, caused by lymphoma, ultimately triggered by my Rheumatoid Arthritis. Probably.
An unfortunate diagnosis
After three more months in the hospital, I was finally diagnosed with anaplastic large cell lymphoma, with alk+ gene and cd30 cells. It’s a long name that basically means “growth in your abdomen.” I started chemo and when I began to respond well, was sent home. Now, I thought things were starting to look up, but because of all those baby seals I clubbed in that past life I mentioned earlier, fate had something else in store. It seems that while I was in the hospital, my wife had decided that enough was enough, and it was time to pay her bill and check out of Chez Malito. All I can say about that is now, when you look up the definition of “pile on” in the dictionary, there’s just a picture of me throwing my hands up. Just a quick note, if you are thinking of getting a gift for someone who just got out of the hospital, divorce is not a great choice. Maybe get a Toblerone or something, instead.
As you can imagine, the last year or two has been quite a roller coaster ride. It was filled with so many emotions, experiences, and absurd incidents that I assure you, we will have tales to share for years to come. (Quick Preview: the Whipple procedure, apple juice bandit, “no you can’t have your RA medicine,” naked hospital roommate's family jewels, “you are sticking that where?” and “Good news, it’s lymphoma.”) I know right? Im sure at least one of those has you going “what the heck is that about?” Well, it’s going to be quite an exciting journey and you’d be the poorer for it if you missed out.
So, those of you who knew me already now know what I’ve been up to for the past year, and those of you who didn’t, know a little more then you did. Yeah, I know, pretty much nailed my introduction if I do say so myself, but I digress. Whatever has happened, and whatever is in store for me, I am fairly sure of one thing – I’m probably indestructible. I’m sure I have a kryptonite out there somewhere, but nothin’s caught up with me yet, and I think it’s time I wear that as a badge of honor. Maybe I’ll make a t-shirt, who knows. Anyway, I’m still here tellin’ my tale, and my ending hasn’t been written. So let’s enjoy the absurdity it is to live with chronic illness together, for as long as we can. It’s wonderful to be here at RheumatoidArthritis.net, and I hope to see you back again next time. Trust me, you don’t want miss out on “naked hospital roommate's family jewels.” It’s a good one.
How often you do experience an unexpected boost of energy?