Post Cards – Why I Fought

I sort of touched on this the other day but let me share something with you I only intended on posting on Facebook. When ever I travel I send a post card to my old neurologist who would not give me Tysabri and who told me to just get used to the wheel chair. Last time I just wrote “-Tysabri” on the card but this time I put a small message since I not only went to Ireland AGAIN but also Slovakia. Like I said the other day, because I faught and pushed for more than what she wanted me to settle for, I have seen things most people never will, I have done so much and am continuing to do so.

“Get used to the wheel chair, that’s the coarse of the disease” It’s almost like that was BAD advice!

I have heard so many horror storied from patients who had bad neurologists; from “don’t research MS, it will just stress you out” to “he
came into my hospital room on a Saturday, closed the door, turned off
the lights, put his face about an inch from mine and said in a menacing
whisper, “Quit f**king around, you and I both know this isn’t neurological. I will never let this down, how many patients listened to her “advice” and have missed out on life simply because she didn’t want to put 100% into her job? After I posted this picture on Facebook I received a comment, sarcasm, that’s my kind of humor;

“Hey Matt,
Your postcards to your ex-“doctor” Inspired me. Thanks:

My GP doc ordered some PT for me to help with my mobility issues. The
PT place he refers people to is a walk across the parking lot from his
office, so the PT place sometimes makes the trip and comes to the doctor ‘s office to fill out paperwork and get people set up on their initial
PT (physical therapy) assessments and appointments.

Last Friday, that’s what happened with me:

I went to my doctor for another medical issue and while I was
there he asked if I’d be interested in PT. Sure. If it’ll help, I’m in.
Enter the Lovely PT Personnel. Two of them came over and asked me to
follow them into an office to fill out paperwork. No problem. They have
their laptop, you follow them, answer questions, they load up the info
into their laptop and presto-change-o, you have assessments and appointments
set up. Groovy.

Here’s the thing though, PT people, pay attention, because this may become “relevant info” for if you ever, y’know, run
into people with, oh-I-don’t-know, mobility issues? Ready?? OK, here it is: People  with MS generally have mobility issues.

Write that down.

It’s varying, from person to person, and from moment to moment. It’s a
medical condition. We don’t have any voluntary control over how fast or
how slow we walk. Hence the phrase “mobility issue”.

Write that down.

So, telling me to follow you into a room to set up PT and then
proceeding to suck your teeth (both of them, by the way), be obviously exasperated and roll your eyes at me because I’m not walking “fast enough”
for you, doesn’t do a thing to affect the MS and/or how fast or slow I
walk. 
Repeated: It’s Not Voluntary.

Write that down.

If you’re bringing your laptop because that’s where the program you use for
scheduling is housed -and I know this is going to be a huge leap but
Humor me here – you might want to know how to actually use the
program.

Write that down.

When I tell you, I need to stop (because there’s no chair around) and I’m in physical pain and can no
longer stand, I’m not kidding. MS is moment to moment. There’s no pause
button. Not even for you. Not even because you don’t know how to use your own
laptop. Not even because you’re impatient SOB’s.

Write that down.

So, no, I won’t be coming in for any abuse, errrr, appointment, errrr abuse-appointment.

Write that down.

Never mind. I’ll write that down for you.
And address it: To your boss.
And to my doctor.
And to anyone that will listen.

Have a nice day”

Don’t stop fighting!

14 thoughts on “Post Cards – Why I Fought

  • October 16, 2013 at 6:12 pm
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    BRAVO . THAT DR SAGERT DOCTOR IS THE SAME DOCTOR THAT INSINUATED THAT MAY HAVE CONVERSION DISORDER, SHE AND HER COWORKER LEFT THE ROOM LAUGHING AT ME WHILE I WAS LEFT IN TEARS. SHE SHOULDN'T BE A DOCTOR. SHE'S AWFUL.

    Reply
  • October 17, 2013 at 6:20 am
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    I swear that you wrote that after knowing what I went thtofgh today with my dumb shit* neurologist I sent her articles and said I wanted a new doctor after she told me that chest/girdle pain, vertigo, or itching were not related to MS and anatomy.  So I said I wanted an appointment she said it was urgent and she would wait list me for an appointment.  There was more stuff.  That was just the readers digest version.   I went to the ER to very help with spasticity/pain/the huG. I weaned off of All of my pain meds so I didn't have anything to help.  Anyway I HAVE an appointment with a NEW neurologist who is supposed to be a "MULTIPLE SCLEROSIS" specialist. .. We will see.  I'll keep you posted.  

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    • October 17, 2013 at 6:28 am
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      Oh ya. .. She said I'd be wait listed until mid November. The hug and vertigo are new symptoms for me

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  • October 17, 2013 at 1:40 pm
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    Kaiser yeah? What was your old doctor's name and the name of the one you are about to see haha?

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  • October 17, 2013 at 2:24 pm
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    My first one was Dr. Saghafi, she was good. I saw Dr. HAGH after her who was amazing but she was in Irvine do it's too far to drive myself. Dr. OROPELIA (not sure how to spell it) is the one who I'm absolutely annoyed and upset with! I'm seeing Dr. Williamson (I think, I'll double check) on Thursday. Dr. Oropelia said he is the "MS specialist". We will see… I'll keep you posted on how he is. … ugh I'll try to post my email conversation with Dr. O. A little later.

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  • October 18, 2013 at 5:51 pm
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    Funny, they told me I was seeing Kaiser's "MS Specialist" and I never saw any of them. And then someone else at Kaiser told me "oh, there is no such thing as an MS Specialist, all our neurologists are specialists in MS" as if that makes ANY sense!

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    • October 18, 2013 at 7:34 pm
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      They originally told me that there are not MS specialist there. Then the MS society told me what doctor to see. That was Dr. HAGH. Then Dr. OROPELIA said she was referring me to there MS specialist. I have an appointment next Thursday so I'll let you knowHow that doctor is.

      Reply
  • October 21, 2013 at 4:54 pm
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    Okay, we get it, some doctors can be wrong and blatantly bad at their jobs (like everything), but this?

    "When ever I travel I send a post card to my old neurologist who would not give me Tysabri and who told me to just get used to the wheel chair"

    Seems like it's just grinding to be grinding. Maybe a better option is to just move on.

    Reply
  • October 21, 2013 at 8:13 pm
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    Or maybe it feels nice to remind myself and that "doctor" that I can do more than lay in a bed haha? What harm is it doing? If she was just wrong I would never do such a thing, but to flat out tell me she doesnt like to mess with a drug that has given me my life back because it is more work and to tell me I need to just get used to the wheel chair? She should be ashamed to call herself a doctor…

    Reply
  • October 21, 2013 at 8:30 pm
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    She was wrong, yes. What harm is it doing? The harm may be only to you by preventing you from being able to move on. Another, and better, question would be: what good is it doing? Maybe instead of berating them on a blog, prove your point by 'showing' them what you can do. You know what you can do, take satisfaction in that. A person can never build themselves up by tearing someone else down.

    Reply
  • October 21, 2013 at 10:13 pm
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    I can personally say that Matt has every right to be angry about this doctor. I am NOT saying that every doctor is bad or is wrong. I am saying that a doctor should listen to their patients and admit when something is outside of their expertise so the patient can get the best possible treatment from the most experienced physician in that situation. I will not allow a doctor to make me feel stupid for having difficulty explaining something to them or to be bullied into a treatment that I don't agree with ever again. I don't understand why this person has such and issue with people expressing their frustration and anger about a physician continuing to cause harm to a person's body and quality of life. you have every right to not agree with the way matt has chosen to express his frustration… You have no right to judge him or to tell him that he should handle it differently. Unless you have experience this yourself you cannot understand what it feels like to be kept ill by the person who is supposed to be helping you get better.

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  • October 22, 2013 at 12:35 am
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    Thank you. Point is, I think I even mentioned that I don't usually post about this, I wasn't going to until so many other people on Facebook responded well to it. So many people can not get what they feel they need because their doctor is a dead end, Its not right. And I have moved on, I could hardly remember that doctors name, but by remembering it all, it lets me see how far I have come, where I was and where I thought I was going and how it all changed by me not accepting what that so called doctor said. I am not even mad, I needed that, it pushed me. But thats how I deal with it and I don't typically talk about it for this very reason.

    Reply

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