Lurker > Jeff_AKA_Snoopy

I haven't met her Ehlers specialist but she has a meeting in March... but given recent revelations I feel like he isn't a patient first doctor? He legit thinks he will find treatment for everyone and that everyone should fight through everything that comes their way to give him his shot to fix things.

She has been denied MAID at this time.

=/

Seems the main thing is that her Ehlers Danlos specialist said that her specific type of Ehlers does not, in his opinion, meet the requirements.

Which I mean, I guess he is allowed his opinion but fuck sakes.

SHRlKE posted...

Good luck bro. Thinking of you.

Thanks! We should be chatting with her shortly, next like 15-20 minutes.

Nervous.

Apparently yesterday I made my wife burst into tears just by telling her I am taking the day off work to be at her meeting.

I guess it is easier to just pretend it doesn't impact me.

Slept better last night compared to Sunday oddly enough.

We meet with the assessor at 1pm. We are anticipating a no but gotta be emotionally prepared for either answer.

I am feeling a bit better now. Think I just needed to feel those feelings and be in that moment.

I am scared and that is OK. I am anxious and that is OK.

Didn't sleep much last night which is compounding stuff of course, but I'm getting through it.

DarthDemented posted...

Didn't your first post say there's a 90 day waiting period after acceptance? I understand your fear though. Anxiety about these things are a bitch aren't they? It's been almost two years since losing my wife but that depression and anxiety about her not being here still pops up every now and then.

The 90 days is from first applying... so that was technically over 90 days ago? Lol

I've pretty much just broken down on my drive to work. A lot of tears and fear. How are you supposed to know how to do all this? I try to be as logical as I can be about it all but like... if they say yes tomorrow by like Friday I can be living my life without her.

I'm not saying life isn't worth it or anything like that. I have a wonderful job, friends, family. I have it all. I WILL be OK I just don't know how to do this.

I'm scared.

SHRlKE posted...

Hoping for you bro.

if it is granted what happens then?

I believe literally from that point forward all my wife has to do is set up a time for the process to happen. They basically use medications to put someone to sleep and then use other medications to stop their heart and they pass away. They also use something to constrict the muscles so the patient does not void their bowels? This also can be done almost anywhere that isn't a huge public setting.

Update!

We hear on Tuesday whether or not my wife will be granted her request.

I am nervous regardless.

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

No news yet.

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?

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.

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.

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.

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

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

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.

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. =/

Happy New Year

We had as good a Christmas as I could.

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

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.

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.

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.

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?

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!

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.

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.

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*

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.

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?

Seems a bunch of tests have been ordered and are coming in today. Huzzah!

She did have a heart echo done which is one thing at least. They are concerned about maybe a blood clot so they are doing a VQ? Test?

My wife personalizes so much when it comes to health care as part of her trauma. So today when she overheard a nurse asking another one why my wife was there, my wife took it as them thinking she is faking things, that she is unworthy of care, etc.

I honestly think being a nurse is hard and they forgot what the plan was for my wife, but it set her down a very negative mental health day today. =/

Ohhh my goodness, FINALLY!

Seems they are FINALLY moving her away from this dank prison like atmosphere and moving her to the regular wards. My plan will pay for semi-private rooms and so that is what we will request if they are available.

Harder day for my wife today. Struggling with some darker thoughts than usual (PTSD from hospitals is pretty bad and she can't take meds for the anxiety it creates) after speaking with psychiatry and whatnot. She is just so disheartened that nothing has happened yet for these tests. Like we get it on a rational level but... emergency admitting you'd think would lead to fast service. Triage isn't so kind but ugh.

Lorenzo_2003 posted...

Damn it.

That makes me angry for her. They need to be more discreet or just shut their mouths with comments like that, at least around patients. I hope it was just a misunderstanding.

Well she was admitted for neurology so

Spent about 5 hours with my wife at the hospital today.

Still a lot of uncertainty about some test results and whatnot. Seems the muscles around her lungs are not working SUPER well, but also are not like dangerously bad? Some of the tests the neurologists have done are interesting in the sense that... OK, I'm going to try and explain it.

Try to play an imaginary piano or type at a typewriter. When my wife tried to do those things, her fingers moved almost in a jittery way? There was no fluid movement to her fingers. The same thing happened when he asked my wife to take her finger and put it on her nose and then reach out to his finger basically at arms length away. Again, not a fluid movement from my wife doing that, it was kinda jittery?

The main hospital in our city is also a teaching hospital so the neurologists had students with them and apparently from what my wife remembers hearing, they said, "Well that's not good" and then kinda walked off.

I am now home to rest and whatnot (I've been kinda sick lately) and they have now called for an ECG just to check her heart health (she has a pacemaker and a connective tissue problem so you know... heart troubles could be likely) to rule things out.

Shitty thing about all this is she is still not technically in a ward yet. She's been there since Wednesday and they still don't actually have her admitted to a ward, so she's sitting in an intermediary area that is very prison-like. Used to be for PEDS and then a mental health ward so the doors lock automatically and it's not very... stimulating.

I booked two more therapy sessions before the end of the year.

I have $500 a year on my plan to use, didn't start with him until a couple days ago... might as well use it all!

Oh yeah my work knows. If it is necessary I can leave almost immediately to go do what I need to do. I can take days off if I need to. So I can do that when needed. They are wonderful about that.

SHRlKE posted...

How are you feeling?

Being honest with my feelings? It sucks. I hate that I worked 11 days in a row (last weekend was my on-call) and on my day off it was spent in a hospital with my wife. I won't really "rest" for my weekend here and likely my wife is sticking around in there until the middle of next week. That sucks. I will have to bring her food due to her allergies and the hospital not being able to work around it. That sucks. My wife has anxiety and panic attacks due to medical PTSD and I will be consistently "on" throughout this time. That sucks. It is exhausting physically, mentally, and emotionally.

I know that next week I will go to the hospital before work starts to deliver food and good cheer (my wife loves me and just my presence helps to calm her down). I will work for 8 hours, I will prepare more food and deliver it after work, and likely will not return home until 10-11pm. And I will do it as many days as my wife is there. That sucks.

It is also true that I will continue to support my wife through this regardless of how much it sucks because I love her and she deserves that from me. I can and will give that.

Some more clarity today.

Seems they aren't super concerned about the test results in regards to heart failure yet, but they want to keep her in hospital since her lung tests have been poor. Her oxygenation levels are good but her ability to breath in and out is "concerning"

And now my wife is getting some test results that could point to heart failure. It would explain the incredible nausea she went to hospital for I'm the first place and some of the generalized weakness she has had lately.

We both got COVID a few months ago. Wonder if her system couldn't handle it.

We dont know anything yet, she is looking at blood test results online because of course she does. Lol

In my first psychology solo session I kinda realized that while I can be emotional very easily, I'm not good at talking about my feelings? Specifically negative ones. I tend to logic my way out of those feelings or do a, "I feel angry but..." and totally invalidate myself? I also feel a lot of guilt about negative feelings I have about my marriage. I do this all the time in my marriage as y'all can tell that my wife has SO many things going on that are all shitty.

I'm allowed to feel things about our relationship too. Like today. It sucks that my day today was starting at the hospital, working 8 hours, and spending another 3+ hours at the hospital after that. It sucks and I didn't like it. I would have rather spent my time in any number of ways.

FEELING this way is valid and I need to not feel guilty about having those feelings. My wife is not responsible for that being what the reality of the situation is. I'm not blaming her for the situation in vocalizing that it sucks.

In my time with her tonight I opened up about some of the negatives about what our relationship looks like. I expressed my disappointment in some things, frustration with other things, and struggled very much doing so without feeling a tremendous crushing guilt over it. My hope is that being more open as much as I can will allow me to have negative feelings without feeling guilty about them.

Still in hospital. Apparently you tell the emergency doctor that you have applied for MAID you suddenly get tests done faster? Gonna get a barium swallow to test that out and some neurological tests.

I went to my first solo therapy session with out psychologist. It was very good and will allow me to work on some of the mental health stuff I've encountered with my wife being in the state she is in.

My wife was admitted to hospital this morning. Lots of vomiting and just not a lot of control of her throat and such. Gonna be staying overnight. It causes a lot of anxiety and stress as it is a very traumatic place for her (as you would expect).

We are talking about what life looks like if MAID is just not an option. My wife would maybe be interested in working for an NPO that is designed to help people with rare/debilitating medical conditions. Do some work trying to connect others who are also in a bad way with the correct supports.

In March MAID opens up to those with mental health considerations, so she could apply again with her mental health considerations (alot of PTSD and anxiety/stress that can't be treated medically due to her MCAS) with the help of our psychologist.

So her specialist said he couldn't really vouch for it, but also said the Sask Government is screwing with her a bit? He said he has had a lot of his patients go for MAID and none have ever had to have HIM give his opinion. He said he feels like the assessors are not sure what to do and want someone else to just say yes or not.

Our GP should be able to do it, but we recently changed GP's and the relationship we have with that one isn't super strong yet?

Also her EDS specialist did have some other things to try so he said he isn't totally out of options and treatment ideas YET. My wife is just not really wanting to continue to test medications for the rest of her life.

Her doctor should be calling anytime now.

I have to work soon so I won't be around for the entire thing.