The profound affects of having Achalasia, Lupus SLE, MCTD, Esophageal Spams, Tooth Infection resulting in oral surgery, Shingles viral Meningitis, CSF Leak, Blood Patch and having a PEG Feeding Tube resulting in malnourishment of my body, my emotional and mental health and how I’m learning to advocate for myself, I’m feeling the burdens and finding that the fight is never over, the names, the diagnoses and the participants just change.
So, let’s work together! No one likes to be sick or have serious illnesses and no one taking good care of us wants to be stretched to the limit and stressed. I say open the dialogue and learn from each other. Because I honestly do appreciate your knowledge and your expertise.
Remember that we’re the ones feeling bad wearing a hospital gown five sizes too large, feeling stripped of our control, our humility and eventually, for some of us, our ability to find hope.
The best care and treatment I’ve received from months of unrelenting illnesses, one after the other, has been from the nurses who’ve cared for me around the clock. Or, at the clinic appointment, have taken the time to say, “hi Susie, how have you been? I’m glad you’re out of the hospital.” Words, simple words. the hospital nurses? All I can say is wow, I don’t know how they do what they do day after day. I’ve been very fortunate to have met some wonderful nurses who I didn’t even need to ask anything of them, they just saw the look on my face and next thing I knew they’d pulled up a chair, sat next to my bed, and just chatted with me. They make me feel human again. And I know they pay a heavy price for the extra time they take to spend a moment talking to me, asking me about my family or where I’m from. They get it, that many of us are burnt out fighting our illnesses and everything that comes with them. They see it all and must hold it all together until they finally get home to their family, their life, with a load of sadness in their heart sometimes or pure exhaustion from working for hours, a highly demanding job.
Just one illness for example has caused me not only pain, malnourishment and the inability to eat or drink orally. But has caused me months of financial stress, phone calls, collection agencies suing me for unpaid medical bills that, while in my sick and weakened state, I fought by investigating why my health insurance hadn’t paid, finding billing errors, calling to point them out, but not getting any help. Until having to hire an attorney because I was being summoned to court for the foreclosure of my home, my only asset, to pay a $12,000 hospital bill that had finally been paid in full after the claim was processed correctly. I’m just a person, disabled, fighting to stay alive and afloat. I didn’t ask for any of this. I’d always taken care of my body, never drank or smoked, very active until Lupus hit.
I now know what it feels like to be invisible. I’m a bar code on a hospital bracelet asked to repeat my name and date of birth numerous times a day, a security protocol so I’m not given the wrong medication I guess.
I’ve found that having to be the person, in the huge gown, laying in a bed, looking up at the well groomed doctor, in a suit, looking down at me, asking me the same questions I’ve repeated day after day, is humiliating for me because the line of questioning borders on an interrogation. Much like questioning whether I’m really feeling this or that or could it be any stress I may be experiencing in my life. My only saving grace is the invasive diagnostic test done that clearly shows that it’s not stress or some odd love of hospitals that brings me in and admitted, but something actually not working right, a problem. But the trust and respect I used to have for doctors has already been tainted by one dismissive, cocky, hospitalist. I remind myself that there ARE “nice” doctors that I’ve had, they’ve just all retired unfortunately.
Nobody is immune to what this life can throw at us. Schooling, money, status, has zero effect on many diseases and illnesses that can hit us. It’s best to remind myself that even if I make it through this rough patch and life becomes more about what camping spot looks best and less about when will this pain stop and am I going to make it? Who must I pay first this month to continue treatment or get on the surgery schedule? That appreciating each day and the people in it that have compassion and empathy are the role models I respect.
I’m guilty of my years working with horses in film and television while still keeping my other job, a legal clerk in circuit court, feeling like I’m fine! Sick? Never! I’m doing everything right and life is my playground. Feeling agitated when my mom began to get sick more often, then start to fade, not able to do all the activities we’d enjoyed. Come on mom! Stay positive! Why all the worries and sad face lately? She’d entered into the abyss I now find myself, and I was too busy being superwoman to stop and look into her eyes to see her fear, sadness, confusion and frustration. I was, however able to get my act together in time to find compassion and empathy for my mom and show her she mattered no matter what. That she was my hero whether chasing down a runaway steer or fighting the cancer that would eventually take her from me.
This past year has been difficult but has taught me a lot. I’m better for it. I don’t particularly like some of the ridiculous, absurd and dismissive situations I found myself in. But, those made me appreciate the good folks more. Those that have made their passion for caring about and for others their life work. Thank you all. You honestly rock and if you haven’t heard it today, I hope you find this after your long day caring for all of us and realize many of us who are hitting the nurse button don’t take that power lightly. We know it comes at the expense of a skilled, qualified person on the run but compassionate enough to find a way to answer it.