Please, please help me

Catchy, little Beatles tune. Wish it brightened my mood on this dreary Boston day.

Shoulder surgery over!  yaaaay! 5 more days before we leave boooooooo! for home yaaaaay! It has been a long three weeks. Insightful, necessary, healing, but long.

From what I can tell, the shoulder surgery went about as good as it could go. I was slow to wake up from the procedure… remember those anti-cholinergic effects? Can’t see (no lacrimation), can’t pee (no urination), can’t spit (no salivation), no poo (no defecation)? Well those were definitely in full force as my body was clearing the anesthesia from my body. But when you are slow to clear…. you have pain relief longer. Catch-22.

I don’t think anyone goes- yay! surgery, well at least I don’t anyways. Especially NOW. After EVERYTHING. It may just be another hurdle to jump and I get that, but I just wanna yell, “I don’t wanna!” and go home. So I’m, sure that plays into my depressed mood. I really just wanna go home and get back to my “normal.”

So, anyways, my surgery was at 9, I was out by 1 and eating, feeling pretty good because I still had the anesthesia going for me. The “team” checked on me at 6… absolutely no pain. No complaints. So they left me be. And around 9 I took some pain medicine and Greg went back to the apartment so that I could rest. HAHAHA! At 10- it all wore off.

Now, there are various reasons that I travel back to Boston for major procedures. My hematologist is here, she wants me here for surgery at this point. There are some of the world’s best specialists here who are used to dealing with rare conditions and complications. It seemed like a no brainer. There really are great doctors here, and there are residents trying to become doctors. Residents who have no knowledge of how to really take care of rare disorders and the patients that have lived through it. BECAUSE THEY ARE BABY DOCTORS. You wouldn’t leave a 3 year old at home to take care of you, why does the system insist leaving immature doctors to take care of complicated issues? (see Acetaminophen addict ).Vomiting, in pain, anxious, febrile and left to a baby doctor. Once again screaming, “SOMEBODY PLEASE HELP ME!!!” Only to fall on deaf, inexperienced ears. Nothing ordered but Tylenol. Oral Tylenol at that… while I’m vomiting….

This is what is breaking me up today. I have been there, I have done that. I have a T-shirt. Screaming again in torture. Really it is nothing short of that. Because I KNOW THERE IS SOMETHING TO BE DONE and no body cares. And they choose not to do it. I am treated like a “difficult patient.” I am only one voice in this. I cannot imagine the torturous tales our veterans have to tell- to scream…. yet no one listens. They were on a battle field, and that is what I feel like, I have survived a battle. But I have to continue to fight and fight, just to stay sane. Or what of the elderly, you know who I am talking about nurses… the one that won’t stay off the call light. You may have even accidentally knocked their call light to the floor, we laughed and rolled our eyes. They call to us, “NUUUURSE! NUUUUURSE!” Only to be ignored. I am not faulting you. I know there are other things that need to be done- and that is the problem. It is called healthCARE- but the term no longer fits. Health management, Health treatment but not healthcare.

At 4 a.m. Calling the nurse for the upteenth time, and boy is she frustrated at this point, we both are. “I want to talk to the charge nurse.”  “Why? What I have not done that I could do for you.” True. “Nothing. I don’t have a problem with you, I have a problem with the resident….” “Then let me call them… I have too many other patients to help you anymore.” 2 more hours go by. You want to know why? Because that was when my physician would be back on call. And he solved my problem in 5 minutes. Eight hours of torture, for a 5 minute fix. Needless to say, I still waited an hour for the medications to be administered. “Demara,’ he said, as he left me that day, “don’t say that you are a difficult patient. What you have are difficult problems. There in lies the difference.” Where was the damn resident to hear that?

I have been reflecting on my experiences as I work on the long awaited book. (Trust me, you still have some waitin’ to do, but I’m working on it). And this is happening TOO MANY TIMES. And this is just to me! A young, competent, health”care” provider… what about those vulnerable populations? If you are in health”care” and you are reading this- what are you turning a deaf ear to? What are you waiting for someone else to fix? What are you too inexperienced to handle? And if you are, how are you tackling that? WHO ARE YOU TORTURING TODAY? Is it a mental health patient who is “noncompliant” in taking meds? Is it the immunocompromised patient that you didn’t advocate for that got moved to a semi-private room? Is it the patient of the growling doctor who noooooo body wants to call because they yell to much?? Who could you add to this list?

Have you ever or have you ever heard a scream of pure grief, hurt, pain? You won’t question it if you have. Have you turned away because it is too much to take? Stop.

Thanks for letting me get this out.