Oh, the dreaded Emergency Rooms. We all despise going to them. Long wait times, unsanitary, overworked and underpaid health care angels, questions, tests, more waiting, more frustration.
Well for me, its 10x worse. My husband said I have averaged about 13 visits to the E.D. a year since I started getting sick. About 90% of those visits end up with me staying at least one night. I will only go into detail about my experiences since I’ve moved back to New York in October 2012 from North Carolina.
I have a couple great doctors now here in NY. It took awhile. But through chance (and God’s will) I finally ended up with two of the best in the area. With that saying though, my E.D. visits do not count at all! I have all my doctors, nurses, therapists all through the U of R. Great network. Great hospital – when all the BS is sifted through and I’m finally being treated for correctly. This way, all they have to do is look up my name, and “poof” ALL my info is there. My diagnosis, my testing, my meds, my doctors, my results, etc. No sifting through papers, calling people, finding and weeding through other hospitals, etc. It’s all there. I even have a great app on my iPhone for emergencies that also has ALL this information along with a great little bracelet I wear with ALL my information compacted into. Genius! Well, that’s what we all thought when we bought that great bracelet, set up everyone through the same network and had my phone geared for emergencies.
Then I go to the E.D. – unfortunately, quite regularly. Not because I want to – trust me!! I was that person who hated pills and tests and all that goes with it. But because I have to due to my disease. Whether I can’t breathe, I can’t stand, I’ve fallen and seriously hurt myself, or my heart problem starts acting up and most recently, severe swelling of my entire body and the extreme tremors I go through not only on my left side, but now in my esophagus and windpipe. Most times, my husband, my daughter or son, will pull up to the E.D. door, unless an ambulance takes me (which is a whole nother animal for me to deal with), and the guard there is very quick and nice and all that, but makes whomever brings me, park the car before coming in with me. Well with someone with my disease this doesn’t quite work out very well as you can imagine. I can’t remember, sometimes I can’t talk, I cant push the “hospital” wheelchair forward in line or up to the “check in” person. I can’t explain why I’m there. I can’t even tell them my name or date of birth. So, that’s just the beginning of the frustration and stress I begin with each time.
Well – here comes in my great phone app or my bracelet, right? Nope! Yeah, they get my name and d.o.b. ok. But still not the “why”. Then finally my loved one gets there and starts explaining things. Triage starts, we are moving, things are happening, again, right? Hmmm – nope!
Now I know the doctors and nurses in the E.D. are definitely over stressed and spread thin. I get that, I really do. Yes, I do appreciate each and every one of them. But, the tears from myself, my daughter, the frustration, the anger, the hostility, the helplessness, the hopelessness, the stress – it’s beyond anything anyone should ever go through. The first thing my daughter, or whomever I’m with, does is tell them what’s wrong. What I’m diagnosed with, what pertinent med changes may or may not have recently changed – as I’m still that guinea pig I talked about in “Reality”, and who all my doctors are and that they all know I’m here and the why!!
Guess what happens next? DOUBT! I’m not yelling, but it’s that disgusting word I’ve heard over and over and dealt with more times than any of us can remember in the last 5 years. “She’s too young to have Alzheimer’s! Is she doing drugs? Is she drinking? (no, but maybe I should start – I know, but gotta have a little humor here and there) How do you know she has this disease? Who told you that? Who said her tremors are from Chorea? Are you sure they’re not from medications?”
OMG! Yes, I swear to you (ask any of my family) these questions are what is asked of us EVERY single time! After hours of my poor daughter standing back watching me in horrible pain, and tears running down her face, and trying to tell my husband on the phone, “They’re not believing us AGAIN”. She’s trying to tell them (which they mostly ignore her because they think someone her age couldn’t possibly know anything about what’s wrong with me), I’m trying to communicate with each of them – if I can’t talk, writing, sign language (my own version :p), pointing & stabbing at what’s written on my phone or bracelet index. Pleading with my eyes at my daughter, the nurses, the doctor, tears running down my face – JUST CALL my neurologist, my G.I. Specialist, whomever – they will explain. They will tell you what to do. They will give you all the information you could possibly need to treat me. Since you obviously at this point do not believe us nor EVERYTHING written in my charts from prestigious doctors in your own hospital about me and my diagnosis! Someone – just listen to me, to us! Help me! Please!
Then they call in the specialists. SMH!! Here we go again. Who is ever on call – which 9 out of 10x is not my own neurologist or specialists (of course) – they think they know it all. Their ego can’t even fit through the door. Hmmm Mrs. Wagner, how long have you had these “symptoms”? Who said you have Alzheimer’s, Chorea, etc.? Well, I don’t see a just cause for any testing. I think it’s just the medications you’re on. (You mean the ones you’re pointing out that I’ve been on for the last few years – yeah, that’s what it is, smh again). Round and round we go, where we get off or should I say land, nobody knows. It’s different every single time. Sometimes a sweet nurse or P.A. will just make that one phone call we’ve been desperately trying to make them make, and find out that yes, I have this, yes, this is what you need to do, yes, admit her, or yes, do this test immediately! Sometimes not, and I go home, still in pain, not “fixed”, just patted on the head like a little girl, “go home now and rest, and everything will be just fine tomorrow”. I am truly telling you the God’s honest truth. I couldn’t make this stuff up if I tried.
How my daughter, son or husband deal with this themselves is beyond anything short of a miracle. I know what’s going on in my mind, but my gosh, what’s going on in theirs? I have so much guilt each and every time that I have to go, that I’ve even stopped going when I knew I had to. I’ll just deal with it at home – somehow. I’ll just sleep, take more of my meds, wait it out – then a few days go by and I’m much, much worse than I was the few days earlier. But what am I to do? How can I keep putting them through this? A few more days of my own pain and worse side effects ahead, is well worth it to me, instead of having to watch them suffer even more.
I wish there was an easy solution. We thought we had a great solution, or at least a helping aid for those who are in the dark and meeting me for the first time. Something for them to read, understand and help them and us. But it hasn’t yet, not once. Not great odds on our end or theirs.
As I struggle each time in the emergency department, I then tend to struggle again throughout my stay. Not every moment, but at least once a day. A new nurse or a “weekend” doctor comes in with speculation and doubt. They look at me, talk with me (If I’m able) and they see someone who doesn’t appear to be as sick as all these other doctors are saying. Remember just for future reference: the illnesses you cannot see are most likely worse than the ones you can see. I have to point out one thing just to make one of you smile, and a little bit of a laugh from myself, throughout all this mayhem – most of the nurses, doctors, attendants all say the same thing to me and to my family – “you look way too young to have this”; you have 24 and 22-year-old children? You don’t look much older than your daughter – you could be her older sister. I wish!! 😉 Though, I’m sure they wouldn’t say that now, the new meds and the swelling has aged me so much, that I now notice as do those close to me. But, it’s a small laugh, a great gene pool I got from my momma – she may be turning 82 years old this year, but she does not look like it at all. Actually, as I’m writing this, my momma is in the hospital right now and my sister has told me that the nurses there can’t believe she’s 82 😉 Thank you momma :-*
Now to move on to my hospital stays. Here’s another inward chuckle. They fight tooth and nail NOT to admit me (I swear on my life again this is true) then — they do NOT want me to ever leave. OMG! Yep, it’s that guinea pig thing again. My husband fights just to get me released. We like Mrs. Wagner here, she’s pleasant, an oddity, a great story and what a puzzle that we must work out, at all costs. My daughter joked once with such a sweet nurse that they have a bed for me here always, and a plan! Yep, a plan. Let’s bring in the neurologist and his or her entourage – and not any entourage, I’m talking between 8 and 10 people crammed into my room with me and my family. No wonder my “reserved room” only holds one bed. Smh!
So, lots of questions (though mostly from the 8-10 people asking my neurologist all about me. Like I’m a prized goat at the fair or an alien from space – ok, I know, that showed my age and my humor at the same time 🙂 Then questions to my family, like I’m not even in the room. That’s ok, I’ll take that little bit of cynicism and off the cuff insult. Just tack it up on my wall titled “In the Life of a Lab Rat”. What else can I do?! The best part (or in my eyes, the worst part) is they don’t just come in once a day – like they do with other patients, no, I get them in between 2 to 3x a day. Yep, Hollywood material in this room. Maybe I will win an Oscar in my next life
We all have to find humor amidst whatever we are in. My daughter has a great sense of humor. She likes me to be admitted to the hospital on certain days only. You see, at Strong Hospital, the patient’s families can eat within the room with them by purchasing a meal ticket in the hospital’s cafeteria for only $5.00! That’s a huge bargain. They get any appetizer, main dish, dessert, sides, drinks, and condiments all for five bucks. But on certain nights, as my family has got the menu at the hospital memorized – smh again – the mushroom, chicken, alfredo pasta dish is the best around – seriously!! $5.00 people – that’s it. As they dine in luxury, hospital style, I get to eat my “free” dinner in which consists of jello, pudding, clear chicken broth, Boost, ginger ale, and here it is – Lemon Ice! Yep, that lemon ice is the best. I’ve acquired such a taste for it that we currently (and always) have some in my freezer at home. 🙂
Well, I needed to share a little about my hospital stays and add a little humor to counter my more serious and “hard to read” stuff I wrote last night, for everyone this evening. I hope it has enlightened you and showed you that even though none of this is easy – with the right attitude (when ever possible that is), there is always a brighter side to everything. It’s buried deep sometimes, but keep looking. You may not find it in your own struggle today or tomorrow, but some random moment you will. It will bring a smile, a laugh or even tears. But happy tears.