Current Events > My wife is applying for MAID (Medical assistance in death).

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Jeff_AKA_Snoopy
12/14/22 11:15:54 AM
#254:


TaylorHeinicke posted...
This is one of the more baffling things I've read in this thread. A hospital doesn't have the capacity to work around allergies?

Or are your wife's allergies like, all over the place

Due to MCAS she has like, 10 food items she can eat?

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SHRlKE
12/14/22 11:54:12 AM
#255:


What a roller coaster this thread is. Best wishes as always mate.
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Jeff_AKA_Snoopy
12/14/22 7:07:49 PM
#256:


So based on some tests so far, they don't believe she has Maesthenia Gravis (but around 20% of people don't have the markers and it is diagnosed clinically through observation and whatnot) and the VQ test seems to rule out a blood clot.

So that's good. My wife is worried that all this misery and pain and she will get no answers. That would suck but even no diagnosis is still a result. Just means we aren't quite looking in the right place yet.

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Jeff_AKA_Snoopy
12/16/22 1:05:14 AM
#257:


She is going for an MRI in the morning and that should be it for the tests?

As they rule things out, we kinda wonder if maybe a lot of this is Long Covid? We got Covid awhile ago and maybe some of her symptoms now are long Covid? She asked the doctors about it and they said quite frankly LC is so new they don't really have a lot of ways to know for sure so... *shrug*

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TaylorHeinicke
12/16/22 1:05:20 AM
#258:


Any movement today?

EDIT: Jesus ninja'd

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Jeff_AKA_Snoopy
12/16/22 1:10:16 AM
#259:


TaylorHeinicke posted...
Any movement today?

EDIT: Jesus ninja'd

LOL, I try to update daily.

I'm fucking exhausted. Between work and providing care for my wife, I've basically been "on" since December 1st. I'm really looking forward to my wife coming home with me and us being able to rest. I haven't been sleeping especially well and I've definitely got a head cold.

I did have my second solo psychology appointment today however so regardless of being exhausted I am doing some good work on myself.

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Jeff_AKA_Snoopy
12/16/22 3:30:11 PM
#260:


My wife has been released from hospital! They attributed her symptoms to either being somatic (lol of course, she's heard that all her life), a muscular problem they can't figure out right now, or long Covid.

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Questionmarktarius
12/16/22 3:54:32 PM
#261:


Jeff_AKA_Snoopy posted...
My wife has been released from hospital! They attributed her symptoms to either being somatic (lol of course, she's heard that all her life), a muscular problem they can't figure out right now, or long Covid.
Has your wife considered B12 and magnesium supplements?
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Lorenzo_2003
12/17/22 3:37:45 AM
#262:


Jeff_AKA_Snoopy posted...
I'm fucking exhausted. Between work and providing care for my wife, I've basically been "on" since December 1st. I'm really looking forward to my wife coming home with me and us being able to rest. I haven't been sleeping especially well and I've definitely got a head cold.

Do you have any family or friends who are helping out or maybe you can reach out to?

Things can be easier with more support, even if its just emotional support. Please consider someone you trust, of course. Perhaps a professional can step in, if the govt or insurance can cover it.


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Jeff_AKA_Snoopy
12/17/22 9:58:13 AM
#263:


Lorenzo_2003 posted...
Do you have any family or friends who are helping out or maybe you can reach out to?

Things can be easier with more support, even if its just emotional support. Please consider someone you trust, of course. Perhaps a professional can step in, if the govt or insurance can cover it.

I've been seeing a psychologist which has been a lot of help. My wife did get to come home yesterday so I got a good night's sleep and that has helped out quite a bit.

My family offered to help out with some meal prep for me but I didn't feel I needed that. Today will be the first day of no work or hospital visits in December and it feels good!

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Jeff_AKA_Snoopy
12/19/22 9:09:35 AM
#264:


My wife is still quite unhappy that some of the symptoms she has are coming and going. Her throat muscles are still not working as she would like and we don't really have a lot of answers on that. Long Covid is the likely thing I guess?

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Jeff_AKA_Snoopy
12/21/22 12:31:35 AM
#265:


They might be changing the paperwork on my wife's application to state her reason for applying is her comorbidities, not just EDS. That is a good change.

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Jeff_AKA_Snoopy
12/23/22 12:53:01 AM
#266:


It is so frustrating that a lot of doctors simply don't believe in MCAS and thus assume my wife is somatic.

I have no doubt that her anxiety disorder and panic/stress that is currently untreated (due to MCAS) does make her symptoms worse. There is no question about that. However, to simply not believe SOMETHING THAT HAS BEEN TESTED AND PROVEN like MCAS is fucking ridiculous and so invalidating to my wife.

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MrWingnut
12/23/22 12:59:52 AM
#267:


Hoping for the very best for you and your wife TC.

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Jeff_AKA_Snoopy
12/24/22 10:06:23 AM
#268:


MrWingnut posted...
Hoping for the very best for you and your wife TC.

Thanks.

I think we are sorta coming to the realization that maybe this doesn't happen for her. I've been asking my wife what she would like to do if MAID isn't offered to her but I don't think she has thought it through that far yet?

Her GP is taking the holidays to think everything through before deciding whether or not to be the "expert" to agree to it as well.

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Jeff_AKA_Snoopy
12/26/22 10:39:49 AM
#269:


We spent a lovely Christmas Day with my family which was nice. ^_^

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dummy420
12/26/22 12:30:09 PM
#270:


I hope you and her had as best a holiday as you could

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indica
12/29/22 4:45:19 AM
#271:


dummy420 posted...
I hope you and her had as best a holiday as you could


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tripleh213
12/29/22 5:05:24 AM
#272:


dummy420 posted...
I hope you and her had as best a holiday as you could


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Lorenzo_2003
12/29/22 1:58:48 PM
#273:


dummy420 posted...
I hope you and her had as best a holiday as you could


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Jeff_AKA_Snoopy
12/30/22 8:19:06 PM
#274:


We had as good a Christmas as I could.

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Jeff_AKA_Snoopy
01/01/23 1:15:12 AM
#275:


Happy New Year

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DarthDemented
01/01/23 1:18:48 AM
#276:


Happy new year to you too my friend!

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Lorenzo_2003
01/02/23 2:19:11 AM
#277:


Jeff_AKA_Snoopy posted...
Happy New Year

Happy New Year to everyone, especially you and your wife.

The only resolution I made was to make, not hope, this year would be a good one, no matter what. Some things happened in 2022 that Id prefer to move on from, and I hope you all do the same.

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Jeff_AKA_Snoopy
01/03/23 12:08:24 PM
#278:


More drama with this whole process!

So the second assessor saw my wife recently in the hospital. This was NOT the normal way of doing things as you have a first assessment, then a medical expert gives supporting documentation, and THEN the second assessor comes WITH THAT INFORMATION and gives an assessment.

The day after she sent an e-mail to the first assessor, my wife's GP, and the neurologist that was looking at things and basically stated her medical opinion that she believed my wife was somatic, that they cannot move forward with MAID as it would be for "mental health concerns" which is not legal.

The document also says things that are patently false, like how my wife didn't have confirmed EDS (she does) and that she needs to see a psychologist for her generalized somatic disorder (she does see a psychologist). This was also sent BEFORE she saw the in-hospital psychiatrist who confirmed that, while she does have some somatic tendencies (comes with having a body that does shit that makes no sense), it is not the reason FOR her diminishing health.

So now we're gonna have to rattle some cages because this second assessor needs to be changed out and maybe we just go directly to the health board about it because this is all garbage. =/

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TaylorHeinicke
01/03/23 12:22:50 PM
#279:


Jeff_AKA_Snoopy posted...
The document also says things that are patently false, like how my wife didn't have confirmed EDS (she does)
how is that level of inaccuracy even possible

something as patently wrong which can surely be proven (i assume there is an actual documented diagnosis of EDS somewhere) means someone fucked up. definitely escalate as best you can

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Jeff_AKA_Snoopy
01/03/23 12:41:02 PM
#280:


TaylorHeinicke posted...
how is that level of inaccuracy even possible

something as patently wrong which can surely be proven (i assume there is an actual documented diagnosis of EDS somewhere) means someone fucked up. definitely escalate as best you can

It was done by a geneticist outside of the province (since we didn't have a geneticist in Saskatchewan) but it is confirmed by that geneticist.

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SHRlKE
01/03/23 12:41:40 PM
#281:


Jeff_AKA_Snoopy posted...
It was done by a geneticist outside of the province (since we didn't have a geneticist in Saskatchewan) but it is confirmed by that geneticist.

As long as you have it documented then you should be golden.
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Lorenzo_2003
01/03/23 6:35:27 PM
#282:


I wonder if all these red tape issues are normal for other patients or if this is some weird anomaly that youve fallen victim to because the disease is rare.

Regardless, please continue taking care of each other in this new year.

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SHRlKE
01/03/23 8:24:47 PM
#283:


Lorenzo_2003 posted...
I wonder if all these red tape issues are normal for other patients or if this is some weird anomaly that youve fallen victim to because the disease is rare.

Regardless, please continue taking care of each other in this new year.

Part of me wonders if the doctors who need to sign off on this just dont have the balls to actually make that sort of decision (or worse its ideological).
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Lorenzo_2003
01/04/23 12:50:38 AM
#284:


SHRlKE posted...
Part of me wonders if the doctors who need to sign off on this just dont have the balls to actually make that sort of decision (or worse its ideological).

Do you mean that theyre personally against well whatever word is acceptable on CE?

Sorry, I dont live where one could do this with legal help, but I think everyone should have the right to do it, especially under these kinds of medical circumstances.

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Jeff_AKA_Snoopy
01/04/23 12:55:45 AM
#285:


Doctors can decline to be part of the process due to their own personal beliefs.

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Jeff_AKA_Snoopy
01/04/23 11:45:23 PM
#286:


We contacted the health authority about the situation and they will look into it.

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Jeff_AKA_Snoopy
01/06/23 4:08:11 PM
#287:


Health Authority got back to us and said the head of MAID stated repeatedly that no decisions have been made yet and the process is still ongoing. When she asked how the second assessor could make an assessment without proper information they repeated that the process is still ongoing and that the proper information will be factored into everything.

We are already kinda preparing to appeal the fairly obvious no that is likely coming in the future, lol. Who knows, maybe my wife will be one of those Landmark cases you hear about.

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Lorenzo_2003
01/06/23 6:31:05 PM
#288:


Jeff_AKA_Snoopy posted...
Who knows, maybe my wife will be one of those Landmark cases you hear about.

Well, I suppose that could be a positive legacy thing, a silver lining as they say.

But Im sure youd prefer the situation just go smoothly instead.

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#289
Post #289 was unavailable or deleted.
GOOGLE
01/11/23 3:21:59 AM
#290:


Whats new?

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Jeff_AKA_Snoopy
01/11/23 9:59:22 AM
#291:


GOOGLE posted...
Whats new?

Not much lately on the MAID front. Just waiting for the whole process to almost certainly say no and then we appeal.

To be fair it is possible that based on the way the legislation is written it just cannot be used for my wife right now. We just feel she isn't getting a fair shot at it currently.

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GOOGLE
01/11/23 10:02:42 AM
#292:


Thats how it comes across to me as well. Whole system seems very immature and needing improvements. Whatever happens anything you can do to improve it wont only hopefully help you but future people as well so whatever youre going through trying to get what you need out of the system isnt wasted energy. Thoughts as always.

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DarthDemented
01/13/23 5:28:58 PM
#293:


Back purge monster!

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Jeff_AKA_Snoopy
01/13/23 5:30:07 PM
#294:


It is my wife's birthday today. As one might expect she is not a fan of her birthday.

We did watch the new Puss n Boots movie which was friggen amazing.

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KaZooo
01/13/23 5:45:40 PM
#295:


Happy birthday to your wife!

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#296
Post #296 was unavailable or deleted.
Jeff_AKA_Snoopy
01/18/23 1:19:23 AM
#297:


My wife's GP sent out the supporting documentation for her request so now we wait. My wife is not feeling confident and assumes we will have to appeal.

Honestly I think the legislation is still quite new and not written for complex situations like what my wife is dealing with. Suffering is not even really in the vocabulary of the legislation. They are trying to do things as objective as possible when suffering and what you want to live through is a subjective thing, ya know?

Is it too much to ask that my wife not want to be a medical guinea pig for the rest of her life?

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Jeff_AKA_Snoopy
01/20/23 12:40:23 AM
#298:


No news yet.

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GOOGLE
01/22/23 4:09:50 PM
#299:


bump

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Jeff_AKA_Snoopy
01/24/23 2:19:56 AM
#300:


Still no update. Not really sure how long it all takes.

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Jeff_AKA_Snoopy
01/25/23 9:11:44 PM
#301:


Jeff_AKA_Snoopy posted...
Still no update. Not really sure how long it all takes.


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KaZooo
01/25/23 9:34:48 PM
#302:




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Lorenzo_2003
01/26/23 1:02:20 AM
#303:


What in the world is going on?!

Id say sue the bastards or file some official complaint, but <sigh> maybe that is just stress your wife doesnt need.

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