Feeling Human in the Hospital & Feeling Judged (It’s like a bonus post!)

The longer your stay in the hospital, the more like an animal you feel. Think about: you’re on an IV/Leash, you’re told when to eat, when to drink, when to go to sleep. Oh yeah—and you have to beg for everything.

BUZZ: Please can I have my medicine?

BUZZ: Please can I get another blanket?

BUZZ: Please can someone disconnect my IV just for a few minutes?

BUZZ:  Please can I get an ice pack?

So by the end of the day you’re convinced the nurses all hate you for being such a hassle. But it’s not like you can do these things yourself. It’s like they specifically put the things you need out of your reach so you have to ask for permission to use them. Silly things!

And they’re so distrustful. They put sneaky little signs on the door that say “FALL RISK” just because you’re a little bit ungraceful on your feet.

And the longer you’re in bed: the worse you feel. Since my last stay I decided two things:

1) No matter how badly I feel or how drugged up I am, I’m going to take a few laps around the floor every day. You can’t just lay unmoving in a bed only getting up to pee a few times a day and think that’s not going to catch up with you. And it’s easy to just say: well, I’m tired and I’m sick so I don’t have to walk. But you do. So I did

2) Wear a bra for the majority of the day. Bras are a hassle in the hospital. They’re hard to put on and take off while attached to an IV, with an IV making your arm hard to bend. Then if you want to nap you have to buzz the nurse, have her disconnect you and then reconnect you when you get back up. However for me, it’s worth the annoyance. I’ve noticed that the last couple of times I was here for long periods—not wearing a bra ended up causing me serious back pain when I attempted to get back to my day-to-day activities.

I once was in the hospital for ten consecutive days. They were some of the worst of my life for many obvious reasons, but I distinctly remember that on day ten—the nurses finally let me do something that made me feel SO much better.

Not a drug. Not a treatment.

A shower.

Sweet Jesus, can you imagine not showering for TEN DAYS? Grody!

Sometimes you just can’t shower while you’re in the hospital. Too weak, too dizzy, attached to too many contraptions—but if you just so happen to have the ability to do so: take advantage.

I’ve been so grateful to have the privilege to shower every day since I’ve been here and I’m so relieved. Tonight I was even able to get the wrap around my IV loose enough to reach up and wash my hair. It reminds me that I need to update my hospital kit next time I’m at Target. I had to have R.J bring me shampoo/conditioner/shaving cream and a razor.

(Make sure to check out what’s in my hospital kit in this post!)

Switching Gears Here for a Minute….

As I blogged about, I’m here for the never-ending sinus infection extravaganza. And besides being a pain in my face, this week has been pretty troubling for me.

Just…choices….or the lack thereof…and judgment from everyone!

When it comes right down to it chronic sinusitis has two treatment options.

1)      Antibiotics – On them. Been on them. For weeks. They’ve done jack-shit. And this infection has just elevated and elevated and here we are. Now I’m on IV antibiotics again for the second time in a month. I’ve been here five days and my face still feels like I’m trying to give birth out of my nasal cavities.

2)      Surgery—Been there, had that cut open. I’ve had two sinus surgery. The last one ended with an immediate post-op staph infection. And keloid scarring inside my nose. How do you like that? So what do I think about going back for a third try? How about NO?!

And that’s literally it. Anybody know of anything else? Remember, I’m beyond the acupuncture, cranial sacral, antihistamine, nasal spray steroid options—those all come before antibiotics.

So I don’t know what to do. My doctor and the infectious disease consultant here both agree that I should stick out the full seven days of IV antibiotics and follow up with oral antibiotics for another seven days. I had an ENT consult who said I should find a good surgeon to go back in and drain my sinuses. But the fact that all three of them can agree on? Antibiotics and surgery don’t mean it’s over.

I’m also getting a lot of lip from people about why I shouldn’t be in the hospital right now—Period. And that I’m taking too much medicine and why don’t I try the holistic round. I had a bit of a break down about how all these comments were making me feel guilty and insecure, but I got a good reminder from my mom.

People may see me in the hospital and they might read my blog and they might think: what a weakling. What a wimp.

But nobody is in my body, nobody knows just how high my threshold for pain actually is and unless they’ve actually talked to me about it specifically—how could they know that my attempts at treating my sinusitis naturally have included:

  • Acupuncture
  • Chiropractics
  • Herbs and teas
  • Immune supplements
  • Exercise and Cardiac Rehab
  • Ice/heat therapy
  • Sinus rinses (every brand, every kind, every night for two weeks before I came to the hospital)
  • Facial Massage

I get this feeling like people think I get a runny nose and I immediately decide I have to have my face amputated. How stupid do they think I am? And more importantly—if I’ve had this problem for literally YEARS—don’t you think that I would try EVERYTHING possible before resulting to the most painful and bodily harmful options? Especially when I have POTS and GI problems? I mean—I’d like to think I come off as reasonably intelligent (most days) so why wouldn’t this be as obvious to everyone else as it is to me?

Maybe it’s because I spring into action quicker than most people would….

So this is what they need to understand: when it comes to infections and immunodeficiency disease there is no time to sit and mull it over. Infections are literally a ticking time-bomb in me. I’ve had infections spread from a teeny-tiny area to body-wide in a few hours. I learned pretty young that if I didn’t intervene early, I would always face a longer and more painful recovery.

And as far as pain relief? Let’s everyone try this—go ahead and pull your fingers all the way backwards. Hold it that way for about two weeks—and then let me know how badly it hurts. Understand that I could have a sinus headache for two weeks before intervening with pain killers. And going to the hospital for a sinus headache? That takes another two weeks of trying to handle it myself with pain killers (and antibiotics, and nasal sprays, and cranial sacral therapy, and adjustments and acupuncture…) I come to the hospital when I am spent.

Meanwhile I gave my own judgy thoughts to someone who I thought was handling their medical dilemma too holistically today. So maybe we’re all just jerks!




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9 thoughts on “Feeling Human in the Hospital & Feeling Judged (It’s like a bonus post!)

  1. Sheryl

    You sound like I used to be. Have you tried prophylactic antibiotics before? That changed my life, though we had to experiment to find the right drug. I still get a couple ssinus infections a year, but we just up my dose for a few weeks and then back down. I am doing much better since I started doing that. Hope you are better soon!

    • admin

      I’ve tried sooo many antibiotics, we’re down to high strength IV ones. Which ones do you take specifically?

    • I never get a fever with a sinus infection.I just get masvise pain in the face and head. My husband uses this to keep from getting bronchitis, and I use to to cure sinus infections. THere are many kinds of bacteria that live in the sinuses, and this gets rid of all the bad ones!.This is the only thing that really helped me my Dr. told me about a sinus wash that will kill bacteria.you needdistilled watersea saltliquid chlorophyll and colloidal silver from the health food store.in a glass mix 1/4 cup water with a pinch of salt and heat to body temperature.add 5 drops each silver and chlorophyll and mix.using a large dropper (like one used for infant medication) drop 2 full droppersfull into one side of the nose while laying down.Turn the head and let it drain out the other nostril. Be sure to have paper towels handy.The silver kills the bacteria and there are several hundred kind that can live in the sinus cavities and anti biotics don’t get rid of them all.Do this twice a day for a week, mixing up the mixture fresh each time.Then do it once a week for maintenance.There is nothing in this that will hurt you, and it cured me.I do not have to take claritin, or antibiotics anymore.best wishes

  2. I so get the shower thing! I was in the hospital for 2 1/2 months and after the first week I asked a nurse if I could have a shower (I was paralyzed and unable to sit up as I could not balance myself and would faint!), she said that she was too busy for a full shower BUT she could wash my haor after lunch while I was in bed. YES! Score! I took her up on it, after that I got a shower at least 2x a week on a stretcher. (special shower room on the neuro floor I was on had this). It was like a car wash but oh so nice! They also had a whirlpool bath that I got to use when I had a student nurse (they have more time to do stuff).

    I am a nurse now and understand my patients needs better than any other nurse I worked with! I am now on leave as my POTS/Dysautonomia has reared it’s ugly head and made me “sicker”. So I am doing my BScN online and doing what I can to get better!

    • admin

      Hi Marieke,

      Thanks for sharing! That’s really interesting, I didn’t think they would do that (hair wash in bed) the whole situation is hilarious to me. So glad to see someone with Dysautonomia working as a nurse, we need more understanding and compassionate nurses out there!

      Thanks for reading,

    • I had the same problem for many years. Finally, I gave in and had sruregy. The space between the tissues in my nasal cavity were too small to allow drainage. After the sruregy and a few weeks of recovery, I didn’t need sinus decongestants or a regimen of antibiotics for the first time in my life! I’ve been free of sinus infections for a little over two years. However, just in the last month, I am beginning to have congestion again. I will not hesitate to have the sruregy again if that’s what it takes. Only this time I won’t wait so long.

  3. Sorry to hear you’ve been getting negative comments. I’ve had a few recently to and it make s me feel so sick. People DO NOT have any clue what it’s like to suffer with chronic illnesses unless they suffer themselves. I was called a moaning cow not long back and really got me upset and the added fact whoever called me left it as an anonymous comment. Hope they find something that works for you soon. I’m in a similar situation. My condition has no ‘cure’ and have tried every med and physio that has been offered but even my consultant has said I will always live with a a degree of pain. Pretty shit news when I’m only 25 and their telling me this pain is never gona go away and I’ll be on strong drugs for the rest of my life. I also have an autonomic dysfunction, they think is pots but still waiting on DX and you’ll understand how hard it is to cope with something so unpredictable. It’s just a shame that others that have not experienced anything like that can be so quick to comment on how you could ‘get better’. Good luck with everything and hope your out of hospital soon! Xx

  4. Mac

    Honеsty is the rагest wealth аnyone can possess,
    аnd yet all the honesty in the world aіn’t lawful tender for a loaf of bread.

  5. Find, buy, and use something cellad a nettie pot. It looks really weird, but it helps to naturally clean out your sinuses. It gently flushes out allergens, dust, and other irritants out of your sinuses. Also go to a reputable health food store and ask about what you can take naturally for allergies/sinuses, and to boost your immune system.

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