In life, we have good days and bad days. Before I got sick, the good days far outweighed the bad ones, and even when I did have a bad one I could usually bounce back pretty quick. But when you suffer from a debilitating autoimmune disease, “bad days” are more often than not, and those days can sometimes stretch into weeks, even months. I didn’t believe my doctor when he originally warned me of this. I couldn’t even fathom what a ‘bad week’ could look or feel like, and like so many other warnings I heard early on, I brushed it to the back of my mind.
Over the course of the last three years, my outlook on my life, my disease, my pain, and my mortality, has all changed. I’ve had a lot of bad days, and a few bad weeks in there too, but only one or two bad months, one of which I’m currently living. What makes a bad month for me is an accumulation of bad days that string together, sometimes only separated by a day or two of down time. ‘Down time’ being a day where I don’t have much pain, or I’m able to get errands and grocery shopping done without a struggle, or I can enjoy an activity of old that I haven’t experienced in awhile.
I’m in a bad month. Or rather, in a bad six weeks…as this one started early to mid-March and we are creeping up on into May. My main caretaker went on a much needed (and well-deserved) vacation last month for a period of 21 days. To get ready for such an extensive time apart where I would have much limited support resources, we planned extensively so I wouldn’t get caught in a bind. However, life doesn’t always follow our plans, no matter how carefully we attempt to execute them… I did the best that I could with what I was given.
The last two weeks especially, have been really rough, on top of already having this pretty tough month. Not only did I receive a lot of devastating health news, including the possibility of my Lymphoma coming back, and the new diagnosis of lung disease, but I was also in the emergency room two times within a three day period.
The Sunday before last I had a “good day”, in fact you could even call it a fantastic day. I was having a low-pain day, I was fairly mobile, and I decided to attend a BBQ I had been invited to a couple of weeks before. Usually, I tend to RSVP to events as “maybe”, as I don’t often know how I’ll feel on the day in question. I hate feeling flaky, and not showing up when I say I will, but that’s just the nature of the beast. Most of my friends and family understand.
That Sunday I enjoyed myself more than I have in a long time. The food was good, and since I’d felt well enough to cook something to contribute to the potluck, everyone was happily gobbling up my Baked Brie with Figs. I even felt mobile enough to go for a swim in their pool, which felt wonderful on my tired limbs. And despite having a great time and not wanting the day to end, as a responsible ill person, I left early on and was showered and in bed by 8, looking forward to ending my great day with an even greater night of sleep.
Except… something weird happened in my sleep.
I woke up the next morning with really sharp back pain. Not lower back which was common, or upper back which could affect my shoulders and neck at times. But mid back on the left side. I felt the pain as soon as I woke up, and even had a pretty tough time getting up out of bed. I figured I must have pulled a muscle the day before and hadn’t realized it. The pain was in such an odd spot that it had to be muscle or nerve related right? So, I just tried to take it easy even more so over the next few days, not wanting to aggravate it, figuring it would heal eventually.
But by Wednesday night the pain had become much worse, and I started to suspect that it might not just be a pulled muscle, perhaps I’d slipped a disc or pinched a nerve. Thursday morning I had an appointment at the hospital to get a biopsy, we were finally going to check the enlarged lymph nodes under my left arm. I called my PCP and asked if she could order me an X-ray after my biopsy. I was already at the hospital, why not kill two birds with one stone and get it checked out? Being the incredibly thorough doctor that she is, my PCP suggested I go to the ER right after my biopsy where I could be seen and treated quickly.
Since she called ahead, the ER knew I was coming on the insistence of my doctor and so I was treated fairly, and not like a drug addict which is more than often the case (but that’s another blog for another day). I was poked and prodded, an IV line put it on my left arm, and a lot of blood taken for lab tests. I was even asked (politely!!) if I’d like something for the pain.
‘Um, do I want to be given relief instead of this sharp painful stabbing feeling in my back..? Yeah, I would…duh!’
After four hours of blood draws, x-rays, a CT scan with contrast (that’s when they pump you full of Iodine and it feels like you peed your pants), and an ekg, they finally had the results. I’d broken my ribs…in my sleep!!
I guess due to my severe Osteoporosis, things like this can and will happen. As far as they can tell, I twisted my body in my sleep during the night and that put strain on my already thin and brittle bones. I fractured my 7 & 8th rib in the back on my left side. And you know what you can do to fix that? Absolutely nothing. Nothing. I mean you can’t put your back in a cast. So you basically just have to be careful and let it heal on its own. For a healthy individual, that’s 4-6 weeks. For a patient with severe Osteoporosis… try 4-6 months. JOY.
So, I went home. No pain meds work on me at this point in time, so I have to deal with this pain on my own. Great. Needless to say, I was pretty upset by the whole ordeal. But, these are things I’ve learned to live with. My disease doesn’t quit. Each day I’m faced with something new.
And that couldn’t have been more true for me when I woke up two days later in even more pain. But what was unfathomable, was that my rib fracture pain had SPREAD. I was now feeling that same fracture pain on my side and front of my ribs. How could that be? Fractures aren’t contagious! The pain doesn’t move along the rest of the rib! Or did it?
So back to the ER I went. This time, it was strangely empty and I was seen, treated, and dismissed in less than two hours (again, another story for another blog). Not wanting to expose me to too much damaging radiation, only my x-rays were repeated, and not the CT. In the course of two days, TWO DAYS, my Osteoporosis had managed to re-fracture an old healed rib break that I’d gotten in 2005 in a car accident. The ER doctor told me that Osteoporosis can aggravate healed fractures and basically cause them to break again. In two days, while all I did was rest my bones, my body managed to fractured entirety of my left rib cage.
This wasn’t just a bad week. Not even a bad month. This was my life. This is my life. I can literally not catch a break in my disease. Or rather I’m catching all the wrong kinds!
I cannot fathom how a body can be this self-destructive. I don’t understand why this is happening to me. It’s literally like I’m being punished for something that I haven’t done. In response to my enjoying just one day off from a constant assault of pain and sickness, my body broke itself into pieces while I slept and dreamt of a good day.
Please tell me how I’m meant to stay strong when my body is destroying itself on a daily basis, and I’m struggling just to catch up?
Tell me how. Tell me why.
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