Argument over the RMH - "Epilepsy isn't Serious"

[Kate]

Okay, as most of you know I am being admitted into the IU Medical Center (three hours away from my home) on the 18th of February. There is another site that I am a member of, and have been a member of since I was 13 years old. It's a G-rated website, and generally everyone is really friendly. I grew up knowing most of these people, and they have helped me along with so many issues in my life. They have stood by me through my accident, my illenesses, finding out I have E, etc.

I always update them when I find out something new, so today I made a post updating them about me going into the hospital, and asking for a prayer request that my mom is able to get the room we are on the waiting list for at the Ronald McDonald House. Well... This lady got VERY angry at me. She does not think epilepsy is a big deal. She doesn't see why I even need to be hospitalized for testing, and she says it is very rude of my mom to use the RMH while I am staying in the hospital. She made me feel HORRIBLE.

First of all, I have had more than one seizure that has lasted long enough to be considered life threatening, so it IS a big deal. My epilepsy came on suddenly and it came on hard, and with all my allergies to most E meds it is important we find out what is causing it.

I just couldn't believe this lady. She thought my Mom should just get a hotel downtown or something. We are going to try to get one at a reduced rate if possible, but she doesn't realize how much money we already have had to pay just because of this. My neurologist, as well as the nearest hospital, is an hour away. The ambulance rides to the hospital are not totally covered by our insurance. The gas going home from the hospital (at least 10 times in the last few months) and than the doctors appointments.. I could go on and on. My parents are teachers! Everyone knows that teachers choose their job because they love it, not for the money.

I am 19 and not making ANY money. My parents are paying for THEIR car payments and they had to take over MY car payment when I couldn't work anymore. They don't complain, but we need to save money when we can.

I'm just in tears now. Am I a bad person? Should I call and cancel and get my mom off the waiting list to stay at the RMH? It's connected to the hospital and I just know I'll feel better having her so close.. I don't mean to be selfish, I don't want to take a room from another family who may need it.. but I need it too..

*sigh*

I tried to explain to this woman Sudden Unexplained Death in Epilepsy and that epilepsy can be life threatening. I tried to explain to her that seizures (like some I have had) that last so long can be fatal, but she still says I'm being inconsiderate. It's almost like she's setting out to intentionally hurt me. She's just being SO cold and rude. I couldn't imagine ever treating or talking to someone the way she is talking to me!

Maybe it's my medicine making me emotional? I just don't know what to do. All I know is we need to save money wherever we can, and even though there is a Days Inn near that gives a reduced rate to family members of patients, it's more than three times as much as we would be paying at the RMH, plus my mom would have to pay for parking every day, which is awfully expensive in Indy.

Also, one more point.. if my mama shouldn't stay at the RMH, than why was the lady so sweet and friendly and understanding on the phone about getting her on the waiting list? If I didn't qualify, or something, they would have told me.

Okay.. so opinions please?

Am I just getting upset too easy?

Wouldn't this hurt your feelings too?

[Bernard]

It's just ignorance. There is opportunity to educate.

On the basis of HRQOL responses to the 1998 Texas BRFSS questionnaire, respondents with epilepsy had substantially worse HRQOL than respondents without epilepsy based on valid HRQOL measures.10 These findings are comparable with the number of unhealthy days among BRFSS respondents from eight other states with arthritis, heart problems, diabetes, and cancer.7 Additional study is needed to determine whether the high number of reported days with pain in persons with epilepsy is associated with seizure severity, injuries from seizures, unintended effects of anticonvulsant medications, or other factors. The high number of days with depression and anxiety suggests that this population has high levels of anxiety and low levels of life fulfillment.1,5,6

Health-Related Quality of Life Among Persons With Epilepsy

Does this lady consider diabetes or cancer to be serious?

[Zoe]

Hi Kate,
I know it is hard when your feelings are hurt, but I hope you can ignore the woman who was so mean and insenstive and focus on what's most important right now-you and your health. Don't feel you need to spend your time trying to explain anything to her. If she was interested or cared, she would have let you know.
There is no reason to take your mom off the RMH list, the house is there for folks in your situation.
One of the more difficult aspects of having a disability is suffering the abuse and hurt from people who are uncaring or unable to understand the reality of the situation. You have your parents, they love you and let's hope and pray your mom can stay with you at the RMH.
Going into the hospital is stressful enough. You have the right to take care of your needs and tune out anyone who is causing you any stress or grief during this difficult time. I hope it will go smoothly for you and that your mom will have a place at RMH.

[Kate]

Thank you both. First of all, thanks for reading, I know it was quite a rant, and both of your comments called me down.

I don't know what I'd do without ya'll!

[brain]

Kate:

Just because all is such available doesn't mean
they're all up-to-date with it; many will scoff,
many are ignorant, many will scorn. Sad - really
sad!

It is DOWNRIGHT FRUSTRATING.

HOWEVER .... There is something you and your
mother could have done - there is an Administrator
who is actually an Advocate; you could have
requested for one. He/She would have looked at
the situation and circumstances and would have
reviewed everything at the Ronald McDonald's House
and then ... there's the other end which is the
next one:

Hospitals have them too; that's what they're there
for; they're Advocates - these 'Power Horses', can
put the Doctor(s) or Nurse(s) back in line if they're
out of order; as well as reviewing the Patient's
record and monitoring the situation. They can tell
a Doctor/Nurse to clock out and go home, write
them up, or even fire them - or - if the Patient is
going out of whack; they will review to find out
WHO PUT THEM THERE IN THE FIRST PLACE! They
review everything to the core. If the patient was
not like this when he/she arrived and suddenly is
berserk - someone put them there, that someone
better take them out of there! Or if the Patient was
like this when they arrived, they will even evaluate
and talk to be reasonable - these Doctors are very
good exceptional Medical Doctors, sometimes they
can discern a problem and order something else
up and most of the time 98% time the Administrator
was right! But that's just some of the heavy burden
of a Hospital Administrator who acts as an advocate
on behalf of the patient.

So you could have gone both ways.

[epileric]

I've had to deal with lots of ignorance as well & even though I know that these accusations are unfounded it still pushes my buttons too. I'm lucky to have a friend (or 2)who let me just vent my frustrations.

[TutsEpilepsy_01]

ya like holy S**T.. people are so rude... if i was you i would tell her to jump...lol but i am blunt and can be rude i dont let no one run me over (well i have to i am just over 5 feet and very small) ...i always put up a fight...lol hang in there kate

[Trinity]

Hi Kate
I haven't posted here a lot but when I read your thread I really felt for you. At first I thought this woman was simply ignorant, which of course is bad enough but she was downright rude. She had NO RIGHT to say those things to you and you do have every right for your mum to come and stay at RMH. Your condition is potentially life threatening (although I don't think you need to be or should need to be in this category) so what the hell other requirement does she expect you to have to meet.
Ignore that nasty woman and focus on you at the moment - I really hope you get some answers and are able to find a way to manage your Epilepsy.

[stringbean]

Kate,
I also think this woman was very rude, nasty, and more. She obviously doesn't care much at all about patients coming in.
I with my hard to control temper these days would have went off on her, and asked to talk to someone above her.
You did not do anything wrong, you have every right to be there and your mother has every right to have place in RMH.
And yes ignore this woman, she in my opinion is in the wrong position, she needs to find a job where she doesn't have the responsibilty talking to anyone.
I wish you the best of luck in finding a way to control your Epilepsy.

[RobinN]

From what I read in your post... that woman is a part of an online group you belong to. She doesn't have any connection to the RMH at all. Is that correct?

You will make yourself sick Kate if you try to please everyone all of the time.
Let it go... Deal with the RMH and the hospital and get yourself the treatment that you need. Now, if the RMH tells you that they need the room for parents of children that are dying, by all means be understanding and have a backup plan.

You must know by now that you will meet all kinds online, and sometimes you just need to shake your head. You don't know what she has going on right now in her life, but obviously she should have stayed off of the computer for the day.

Put your energies into positive endeavors.

[angel]

Kate,

my husband doesnt think epilepsy is Serious.... he keeps trying to get me to quit my meds..... ( i was thinking about it until yesterday i had about 4 auras /w no seizures) I just have simple partial seizures auras cpc) which have stoppped while on keppra except for auras....

I feel you should just ignore this lady dont argue with her she is a negitive person.. If I were you even though she hurt your feelings id just blow her off and go on with your life... sometimes when people dont understand something they say really stupid things....


hugs
love,
angel

[skillefer]

Well Kate, some people are ignorant and willing to learn, and others just choose to stay ignorant.
Sounds like you ran into the second type. Man, I'm sorry to hear it. You know what, as I've told my hubby before, God doesn't like ugly. Sometimes, you just have to let it roll off your back.

[Meetz1064]

Kate,

This woman is just, well, OFF HER ROCKER. In plain English. And obviously uneducated, too.

Don't let people like her get to you. Use the RMH if you need to. If my house were closer to the hospital, (and I'm only an hour northwest) I'd offer to let you stay here. But you don't need to be driving more. If I could talk my relatives in Indy to letting you or your mom stay with them, I would, but they're......sort of like that lady, so I won't offer them up either. *SIGH* This is one of the few times I wish I lived in that gargantuan town.

But, I repeat, this woman IS OFF HER ROCKER. Don't let her get to you. Just let people like her roll right off your shoulders. And, if you feel like it, take the time to educate the uneducated......like her. It can be frustrating, but in the end worth it.

Good luck.

Meetz

[renee97]

Kate,
In my "line of work" (**) I have had to deal with people as rude as the unfortunate illiterate woman who spoke with you. Truth is, I don't have a line of work. I've been unemployed since my first tonic/clonic in 11/2005. Most of the people I know are at least respectful regarding my E. Only a few people have seemed to tune me out. But (**) as a woman with a male-sounding voice, I seem to attract a lot of hostility and extreme rudeness.
My suggestion if you ever encounter anyone like this again: if they are online, don't respond at all and if they send another email, delete it without opening. If they are on the phone, hang up without saying anything.
"Only you can allow others to make you feel bad." (not original with me)
r97

[Nancy]

Hang on ((Kate)) -- Ignore the hateful ones and keep going with the tests.