Hospital How-To’s

Hospitals are nerve-wracking places. You end up away from home, being woken up at all hours of the night. Procedures, testing- none of it is fun and little of it is easy. I’ve spent several years cultivating a knowledge of how to survive and make hospital stays easier, and I am still learning things that make it more bearable.

Bring comfort items. Hospitals are cold, drafty, and unfamiliar. In my experience, having your own clothes and your own blanket or pillow can make a world of different. Often, you end up in a gown, and I generally try to change out of it as quickly as possible. Depending on IV lines or monitors, you may need a nurse’s help to briefly disconnect lines or tubes in order to change. And that brings me to my next point…

See my designer gown?

Be nice to the nurses. Without a doubt, they are the ones who are in charge of your fate. No, they’re not making all of the calls, but they are your allies. You probably won’t see your doctor for more than a few minutes a day, and your nurse is the one who will generally be administering meds, helping you with things, and passing information along to the mythical physicians. If you’re like me, and absolutely hate calling the nurses because you don’t want to bug them, remember that it is their job to help you. If your IV beeps, call your nurse. If you’re uncomfortable and know you can receive medication, call your nurse. Trust me- they’d much rather you call for help rather than falling, or reset the IV rather than having it beep nonstop.

Write out your questions, comments, concerns. You will see your doctors briefly. Generally they’re in and out, and it’s only after they leave you remember that pressing question. Write down what you want covered, and that way throughout the day you can add questions or comments, and won’t forget major points when your doctor arrives and leaves in under five minutes.
Ask questions and bring up concerns. If something doesn’t feel right, or you’re worried: ask questions. As much as I sometimes wish they were, medical professionals are NOT mind readers. They need you to let them know if your pain is out of control, or if the medication you just took is making you feel sick. Telling the doctor or nurse what you are experiencing allows them to make better and more accurate treatment decisions. And if your doctor isn’t listening, contact the patient advocate. Most hospitals have them, and they can help- but only if you talk to them and say what you need.

Taxi (my service dog) and I

Figure out coping mechanisms. The hospital is boring. There’s not much to do, and when I’m in the hospital I’m normally feeling pretty crappy. I’ve used different things over time, but music, audiobooks, netflix, or art are my go-to’s for managing pain, boredom, and everything in between. This falls in line with my next point.

Art- my savior in tough times.

Bring your electronics. (And your chargers). Phones, iPads, computers- they allow you to escape the land of sterile walls. FaceTime with friends, watch a youtube video, catch up on your favorite show.

Facetime is a brilliant invention.

People will wake you up. It is a fact of life, and there is little you can do. I once had a nurse and nursing student come in at 3 am, turn on all the lights, and then the nurse did a 30 minute lesson for the nursing student on how to draw blood from a central line. Loudly. If you have long term stays, it is definitely  worth it to talk to your doctors and figure out if meds and vital checks can be moved around slightly, so you can have as much uninterrupted sleep as possible. This isn’t always possible, and so in that case, using an eye mask and earplugs can make it quieter and less fluorescent.

Hospitals aren’t fun. They aren’t enjoyable- but sometimes they are necessary. And in those necessary cases, finding ways to make it more enjoyable are a big deal. (Okay, maybe enjoyable is a stretch…how about “not completely awful”?)

I wish you all the best of luck with admissions, appointments, and inpatient adventures.

Finding my Voice

The most courageous act is still to think for yourself: aloud. -Coco Chanel

Last Friday, I had my feeding tube replaced. This replacement has to be done under X-ray to ensure proper positioning. Tube replacements are quite routine, and I’ve had many over the years since getting my surgical tube.  Many patients have no trouble having them placed, and need no sedation or anything of the sort. I’m not one of those patients. The many painful experiences I’ve experienced in interventional radiology make it incredibly difficult to be calm and lay still during replacements. This means that for every replacement, we use some sort of anesthesia or sedation. 

Earlier in the week, the radiology nurse called to confirm the date and time, and let me know that the medications I had used in the past could not be used this time- they needed to be administered by an anesthesiologist, not a nurse. They hadn’t scheduled for an anesthesiologist to be there with my procedure, even though I had told them what sedation protocol I had tolerated well last time. This meant that the procedure would either be rescheduled or I would need to use different medications.

I was panicked and scared, but not just because of fear of pain during the change- I was guilty for being uncomfortable about needing any sort of sedation something that “everyone else” seems to handle just fine. I was frustrated that we had to reschedule for something I viewed as “my fault”. I felt angry at myself for not wanting to try the more minor meds again, and upset that the changes scared me so much. Why was I being such a wimp? Again “everyone else” entered my head- if they can do it, why can’t I? These thoughts come into play much more than I’d like to admit. I want to be as strong as the mythical “everyone else”, and able to cope as well them.

When I explained my worries to my mom, and told her how I felt that I should be able to handle it, she said something crucial. She reminded me that this was my body, and mine alone- and that I needed to advocate for the method I felt most confident with.  She told me that I would be the one who had to live with the results. These are all things I know, things I’ve said and believe; but in those moments I felt weak. Is “everyone else” braver or stronger than I am? 

In this age of social media, it’s easy to compare. We forget how much the posts and photos you see are filtered. It’s easy to put up a smile and a quote and make things seem easy and simple- hide what happens behind closed doors in the moments of fear and panic and pain. What you see from someone’s Instagram feed is what they want to show, and it is impossible to see real life from snapshots and short sentences. Everyone’s story is different. Someone can seem a carbon copy of a story, but each journey is unique in every sense of the word.  So please, put the thoughts of “everyone else” out of your mind. (I know, easier said than done.) It matters not what they do, how they do it, how they handle it- what matters is you. Your body, your choices, your expectations, your reality. Comparing ourselves to the split seconds captured on social media is fundamentally impossible.

My mom reminded me of something I had  momentarily forgotten in my panic- this is my body. If this is what works for me, and allows me to comfortable and calm, then that’s what I should fight for. In the past, it’s been easy for me to fold under pressure. I don’t want to make things difficult for others, so I may not come out and say that I’m not okay with this. I’ve tried many things that I have been uncomfortable with, and have paid the price. I’ve felt bad about not pushing through, when I see someone else online or in person doing so. In the past years, I’ve become much better at advocating for myself, but it’s still a work in progress- one that is absolutely essential. More than we’d like to admit, patients try to convince themselves that what is best is what is easy. Or at least- I do. I hate imposing, and pushing for things that others don’t seem to think necessary. I want to make my caregivers jobs simpler, and I want to be “trying hard”. It seems silly that after several years, I still have these feelings of guilt and anxiety- but if anything, they have taught me to ensure that I am speaking up for what I want and need. If rescheduling a procedure allows me to get the medications I need, then that is my decision. I called back, and confirmed that I wanted to do reschedule, and use the protocol that had worked so well before. The swap happened, and it went brilliantly. In fact, it went better than it has ever gone. 

At the end of the day, you are the only one who knows how you feel. Doctors, nurses, family, friends- none of them live in your skin. No matter their opinions, in person or online, no one knows how it is to exist in your mind and nerves and heart. This is your body, and it should be your choice as to how things are done.