A room with a view

ERSignWhen I was finally hospitalized, the nurse apologized profusely to me; “I’m sorry Ms. Daquin, but none of our rooms have a view.” I laughed as much as anyone who has been throwing up for 24 hours can laugh and when asked what was so funny, replied; “As long as it’s in the hospital you could put me in the broom closet and I’d be content.” The nurse must have thought it was a quaint European joke and she didn’t ask for me to clarify what I meant. Had she asked I would have told her; “When you are starving you’ll eat anything.” And this would have been the perfect explanation for my immense relief at being hospitalized AT LONG LAST. A few months previously I would never have imagined I could have wished to be put in hospital, let alone beg to be. This is the story of how that came to be.

Before I rampage against American healthcare systems, let me preface by saying having lived in other countries, it’s not a singular flaw but a worldwide flaw. There is one reason for this and it is this. PROFIT over COMPASSION.

It is true, we cannot go back to the ‘village days’ of doctors who work out of the goodness of their hearts and do not expect to become rich. That ship has sailed. Doctor’s today go through years of expensive training and expect adequate compensation, perhaps without this they would not be motivated to endure those years of rigor. This is one reason costs go up, quality of care down, and patients are often kicked to the curb in terms of continuous and good care, few people have it in them to become doctors and with a growing population, those who do, are tempted to compensate for arduous training by charging high fees. The other huge elephant in the room, the real problem, is the insurance industry, which has ruined the system so thoroughly there may never be a fix, irrespective of whether doctors over-charge.

Okay enough with the negatives … problem being are there any positives in healthcare today?

Certainly not where mental health is concerned. Anyone who has had a mental health crisis can attest to the stigma, lack of care, and inadequate diagnosis, not to mention penchant for over-medicating (or under-medicating) and error.

Unfortunately the same may often apply when you go through the healthcare system for physical illnesses, especially via the ER. I preface this by saying I am infinitely grateful that I had ‘some’ healthcare insurance at all, for surely having none unless you are on public assistance, can be even more terrifying (and I had 14 years of that).

My ordeal began a little over three months ago. A violently ill day out of the blue. You think to yourself; “It will be okay I’m just sick, maybe food poisoning. IT WILL PASS.”

Famous last words ….

The illness did not pass. Days of throwing up and all the rest, led to my first ever ER visit, then my second, then my third  and so it went on. One thing marked these experiences aside a dizzying variety of ‘opinions’ based upon no evidence and seemingly at whim. The thing marking those ER visits was the current healthcare’s notion that most diagnosis and treatments should be out-patient.

Until just recently I would not have even considered this. Is it right to make most healthcare on an out-patient basis? I may even have said; “Yes, because of diseases the more you can avoid hospital the better, it’s a modern approach of out-sourcing and enabling you to get diagnosed without having to spend days in a hospital bed.”

Made sense to me. Until, throwing up for weeks on end, nausea 24/7 and we’re talking “Super Nausea” the kind you couldn’t even describe accurately if you tried, I realized that I might actually end up dying at home.

It isn’t as hard as you think to get REALLY sick, REALLY fast. And in my humble estimate, when you get that sick if you are anything like me, you don’t want to be at home. You are scared, unsure of what is going on, violently unwell and you want to be in hospital. Yet every time I would go to ER, shaking, unsteady, sick and scared, I would be given basic treatment and told to follow-up with my specialist.

And sent home. Where not long after the medication wore off, I would get sick again and soon enough, end right back in ER.

During this time I thought of my grandparents, visiting them when they were in hospital, maybe for appendicitis, something like that, bringing grapes and flowers. It felt so comforting. I envied them the ABILITY to be in hospital. Apparently it was a modern-day luxury to be admitted these days.

There are times, continuity of care in the ER system needs see the bigger picture. If a patient repeatedly comes into the ER (at great expense I may add) it makes more sense to hospitalize that patient and DO THE TESTS THEN AND THERE than ask that they continue to follow-up with their specialist. Whilst having the specialist in the loop, the critical nature of such experiences requires for the patients sanity that their symptoms be addressed in a more direct manner as used to be the case before hospitalization fell out of vogue.

Seeing a specialist may sound wonderful, but what if they can’t see you for a month? Or you have to wait in a waiting room for 3 hours? And you’re throwing up? Or you can’t even make your appointment because you can’t ride in a car without vomiting every three seconds? There are times that out-patient services FAIL very sick patients and only exacerbate the STRESS for everyone involved. If a patient is very sick and cannot drive themselves or obtain a ride? If a patient has gone to the ER and misses that appointment?

I longed for someone to say; “You are VERY ill we’ll admit you and find out what is going on” but instead, I was released, released, released, paid a fortune in ER visits, got the basics done lots of times without any progression, and waited for days to see specialists who then tested me, and released me to await the results. Days, weeks passed, the sickness continued, my weight fell off me, doctors asked if I was anorexic, appointments were made, and I felt I was part of a nightmare.

Eventually EVENTUALLY when I was so sick it was impossible to turn me away, I was admitted. And in that admission I was tested and given a diagnosis and some kind of ANSWER for what ailed me. But this did not in any way appease the weeks (by this time, months) of extreme anxiety and feeling that I had absolutely nowhere to turn.

If you cannot turn to a hospital by way of an ER during your darkest moments of health then something is VERY wrong. It is absolutely terrifying to feel that you are incredibly sick and nobody is willing to say; “I will help you.” Instead, you are at the whim of the system which profits each specialist and mires progress to a crawl, causing an illness to become a trauma from which it is very hard to recover.

In essence I say this. Bring back hospitals. The kind we recall from childhood, where if you were really sick they would take you into a ward or room and doctors would come and examine you and answers would be given, and even if that didn’t happen over-night, you were not left being sent home desperately sick without answers, and without the succor of the medical world.

When you are very sick, sometimes the only thing you can cling onto is the reassurance that someone in the medical field will be able to help you, that you will not die alone on your bathroom floor, that you are safe. The anxiety of a serious illness cannot be underestimated, until you have experienced it, you may know logically that it is unsettling but not really comprehend the terror you can feel when something is very wrong and doesn’t stop. Be it pain, throwing-up or nausea, we are not trained to cope well with either the unknown or the unstoppable. It is the purpose of medicine as much to support as to ‘cure’ and this should include better options of hospitalization for those who do not fit the ‘recently amputated limb’ category of emergency.

I fully appreciate that with our burgeoning population, what was possible in 1950, or 1970 is not possible today. There are simply too many people. But if you look at the sheer waste of resources of repeat ‘visits’ to the ER, as well as unnecessary repeat tests, and the danger of some of those tests being repeated, it become apparent that it is ineffective to triage very sick patients without an option for hospitalization. In a sense a ‘one shop’ approach rather than our current plethora of experts, all in swish offices with highly expensive over-heads.

Most hospitals today in the US are quite grand by my European standards and yet, I would give anything for an antiquated ward if it meant receiving constant care in crisis, over pretty looking ER’s that offer little by way of comfort.

I admire anyone who works in the healthcare industry and this is no indictment of their tireless efforts, nor underappreciating the reality of modern-day-medicine, and the ‘frequent flyer’ type of ER patient who comes in regularly and to some extent, cries wolf. Maybe there is no fix, or way of discerning the patient who simply wants in, versus the patient who really needs to be, but something has to change.

Faced with mounting debt because of the number of cries for help which in effect a visit to the ER represents, I look back on the early part of this crisis with dismay, wondering what I could have done differently. Maybe if I panicked less? If I were braver? If I had been able to do more research? (Perhaps in between throwing up constantly and not having any energy). And yet, I must also hold the system accountable, because I feel both grateful and yet, that it failed me.

How did it fail me? One ER hospitalization relatively early on, based upon serious, ongoing symptomatology, and tests done during this hospitalization, may not only have gotten answers two months earlier, but avoided the trauma that I now unwillingly associate with this illness, exacerbated not only by the actual illness, but the experience of feeling completely helpless, without anyone to turn to.

A word to the wise, if I learned anything, I learned the value and importance of a VERY proactive PCP. I did not have one. Mine was kind, friendly and completely unprepared for helping her patient navigate quickly through the system. A proactive PCP can go a long way to cutting through some of the things you will not be familiar with, they can have you hospitalized if they know how to circumvent some of the bureaucratic red-tape insurance companies put up.

Additionally, have an advocate, someone who can speak for you, because when you are severely sick it is less likely you will convey all that you wish to convey effectively. An advocate may be the difference between ensuring doctors understand the severity of your illness and not. It takes some of the stress off you during a very stressful time and can avoid being at the whim of unresponsive doctors who are coming off a long shift.

I’m hopefully on the path to healing. At least that is what I have chosen to believe and much of getting well is attitude and focus. Just as I was traumatized by not having any support during the hardest time of my life, I am reminded that so much of ‘wellness’ is our will to be well. We cannot control very much in our lives, and nevermore is this true than when we are sick, but we can try our hardest to overcome burdens when they strike, and stay positive, because without that the journey is too hard.

The medical world should encourage this positive faith and hope, rather than strike it down with incompetency and bad protocols. Sometimes a sick person really does need, more than anything else, a room with a view.

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84 thoughts on “A room with a view

  1. What a nightmare experience! 😦 And how scary to be so ill and not know what’s going on and not have the help of the medical community to get to the bottom of it. So glad they admitted you, and I hope you are on the road to recovery and wellness.

  2. I left him, so I don’t expect any support from him any more.
    I however am still struggling with his actions towards our kids. Or rather have to deal with their reactions to his inaction.
    Oh well! Hopefully things settle down for the kids eventually!
    Thank you for your support. I’m better now. Hope you get better quickly. 💕

  3. Thank you very much! They’re welcome! I need the belief in myself most of all 😉 Well, the strength and encouragement should help me get there! So thank you!
    On a side question, are you the one who requested access to my blog? Someone did, and I don’t grant access unless I have already had some sort of contact with the person requesting… I’d grant you access (though you don’t have to feel you have to request anything if it wasn’t you, I won’t be offended!)

  4. I knew you were sick Candice, but I never imagined you were this sick. God! Reading this made me feel like crying, nobody deserves to be alone dealing with this kinds of situations. There is no question that the system is broken and when something is broken either we pick up the pieces and try to put it back together or we break it even more, and I feel that some sectors of our society choose to break it even more. I hope you feel better, remember that you do have control of something more important than anything……. YOUR THOUGHTS. SEND YOU A BIG HUG

  5. It’s fine. I was blessed to have very good people help. People I didn’t know well when it began who showed what they were made of. None of them live near me. Several from WordPress including Mark, Monique, Natalie, Jane, Derrick, and some others. Some who I’d been closer to, I bearly heard from. You find out who your real friends are in a crisis and that’s a good thing.

  6. This should be a rare story but these days it seems common place to just send a person home and then they go back again. It took YEARS to finally diagnose my muscle disease after a biopsy was finally done at the Mayo Clinic. My daughter went to the ER 31 times. Maybe 32 now that I think of it before someone finally realized that she was not getting better and her gallbladder was removed shortly after.
    But we STILL had to wait 10 days after knowing her gallbladder needed to be removed to see a surgeon. 10 days. 10 more days of daily ER trips for hydration.
    I feel your pain in this experience. It is so so sad and infuriating that you had to go through it.
    My husband recently got a new job. With his new job the 4 thousand dollar pain patches are now just 7 dollars. No biggie. This one instance shows how corrupt the entire system is. But I’ve got a patch stuck on my neck right now so I shouldn’t complain!

  7. No, I think you are being honest about a broken system and that’s not a complaint, I know how grateful you are but the system is broken and you’re honest about that. Good grief the suffering is wrong. Very glad about your husband’s new job though. Much love to you 💓

  8. The system is so broken that it has left my daughter bedridden and me with some supposed rare disease that they have not even a treatment for as my body deteriorates. I am only grateful for the patch that sits on my neck/shoulder due to my husband’s stroke of luck in his new job but as for the entire health care system….it is bullshit and cares not one bit about the next number up on the patient list.
    Much love to you! I’ve been catching up on your poetry yesterday and last night. Moving and powerful and thought provoking as always!!!!!!

  9. That is hideously wrong that your daughter should endure that and be in any way broken or bedridden it’s just so wrong it fills me with rage. I only can send healing and hope for her and for you my bright and beautiful friend

  10. Thank you. It has been so tearing to my soul. Emotionally it has been hard to hold up through. Trying to be strong for someone else when I myself am so broken in little pieces trying to glue them all back. I don’t give two flying flips about myself right now, I just want her to be well.
    This is a girl that for the first 4 months of her life they KNEW nothing was wrong with her. I KNEW something was. It took 4 months to get someone to believe me and she had her kidney removed 3 days after someone finally listened. Then it took almost a month and alllll those trips to the ER for someone to finally do an ultrasound to say oh shoot yep her gallbladder has failed. And then finally after YEARS for them to realize her adrenal glands have failed.
    It is so hideously wrong. It gives me rage that I don’t think I have ever felt before. And then it gives me heartache that I could have never imagined.
    Thank you for the healing hope you have sent!

  11. I’m not a mom but I would think it’s far more awful and wrenching to see a child of yours sick and unable to really help, that must be about the worst it can get, but I see so much strength in you, so she has inherited good genes in that respect and I believe as a daughter of yours, she will continue to fight through this unfairness and find some joy in life – that is my hope – and I know yours – and of course it is crushing to have your own things going on that at times are overwhelming and not feeling you can help anyone else because of this, but I know you well enough to know you DO help so many despite that, in everything you write and in your heart, which despite sometimes being jaded as we all are, has hope and beauty in it. There are a lot of shit people out there, and illness can really separate the asshole’s from the true friends but that’s not a bad thing, it means you don’t have to waste your time believing the bullshit, there will never be tons of good people but even one is worth their weight in gold. It is hideously wrong though and I don’t think it’s negative of either of us to recognize that. I will always send healing and faith in you sister

  12. It has been a bonus of illness. Bullshit friends have left the building running and soon after true colors of everyone came through. It makes things very simple and I like knowing what and who I am dealing with. I would rather have a small circle that a large bullshit one.
    We recognize the agony in life, you and I, but we also embrace and recognize the good and celebrate that when we can while staying honest and authentic cause well. We are just bad ass that way!!!!!!
    My daughter is soooo strong. It is amazing what she has been through and how resilient and so compassionate. .the girl can barely get out of bed but last night I couldn’t move my leg and she asked me if I needed some water or something from the kitchen. I thought she hasn’t been to the kitchen in weeks yet she will go in the middle of the night for me. Heart of gold. Truly. I am so thankful and blessed. So yeah i can be pissed as fucking fuck hell that she is sick and i am sick and that there are assholes in the world and that my past sucks and I have ptsd bullshit to deal with BUT I do have so much beauty around me and I never let a day go by without noticing it and being grateful

  13. Beautifully realized and one of many reasons you quickly earned my respect. She gets her heart from you even if we get angry at betrayal it doesn’t mean our hearts turn black or that we are consumed by anger, as you say, it’s a relief to let go of fake people. You are a loving, protective mama, the only way to be.

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