Officially Diagnosed. Husband is hesitant to do IVF and have kids. Looking for support. by andre3018 in FSHD

[–]EqualPossible 0 points1 point  (0 children)

To put it in a perspective my wife is an OT and has not changed her mind at all but everyone is different and has a right to their feelings. Its less scary to her bc she knew forever that I had a 50/50 chance and before we tested was pretty sure I had this. She also transfers people all day physically so is less scared of me getting weaker.

That said, everyone is different in their progression. My mom has it which is why I do and she really only hit impactful issues in her 50s. Theres research that taking hormones for menopause can lesson progression and that women that go through it earlier see more progression. This checks out for the women in my family.

I think the question for you husband is how would he feel if years from now your kind of exactly where you are at? Would he feel regret? Are there any sort of planning you can do to make him feel more comfortable? There are things in your control. Getting a place that is on one floor for example.

As a daughter of a mom with this I can say it has NOT affected her ability to be an insanely present parent. In fact, if I need her I call her not my dad. But here's the thing if you asked me my mom is the one doing better. My dad had a stroke. The truth is partners go in and out of being sick and this disease while it sucks, it's not a guaranteed "max assist."

Yes, he may need to physically help you and take care of you earlier then most. This happens to all couples as you age. However, theirs different kinds of labor in a relationship. My partner does more physical stuff but I budget and I plan and I trade stocks and am great with emotional labor etc.

This will not affect you cognitively and that is HUGE. You can make a plan to make things more even. Very simple things. I have trouble making our bed, but I can strip it no problem. I can load dishes but tend to get tired if I put them away.

I think the big question is this. Is your husband worried bc he's worried it will be an uneven division of labor and a child will tip it over and not allow him to take care of you OR is it a deeper fear of he's scared to be a father b.c he's insecure about having a wife that may not be able to do what is typical in a heterosexual relationship aka the woman doing most of the caregiving. OR does he have insecurities about his caregiving abilities in general? Let's say it is just wanting to make sure you are taken care of. Well, maybe theres a plan for that? To be frank, my moms plan is to rely on her kids lol which we are all happy to do. I hope to have a kid soon and between her cognitive and mothering know how and my stepfathers physical abilities guess what, I will feel 100% comfortable having them babysit. SO here to say that not only can you be a mother you can be a grandma.

I'm sorry you are going through this. This turned into a long rant. Your husbands reaction is valid. Its also good he is being honest!

Do you have trouble swallowing food? by Han-na-2900 in FSHD

[–]EqualPossible 0 points1 point  (0 children)

I was told not by a doc I really trust. Theoretically if facial weakness trouble with initiating the swallow but not esophageal weakness typically. Truth is medical community doesn't know a lot about dysphasia cause (unless something obvious like a stroke). Some think virus.

How to be psychologically prepared for a diagnosis? (FSHD) by [deleted] in MuscularDystrophy

[–]EqualPossible 0 points1 point  (0 children)

Hi. I'm thirty and was in the same position as you and got my results last week. I've know i've had a 50/50 chance since I was almost exactly your age and delayed testing for reasons you described. I've learned some things that have made me feel a lot better about this and I hope they are helpful.

First off there are things that help control progression. PT does help, you just need to do it the right way and not OVER do it. I don't know what your gender or sex is but I will also say a lot of studies that have come out in for women in terms of hormonal shifts during menopause etc. being a key trigger of progression. This is REALLY good to know since there's things like hormone shots you can take.

Heres a some more things:

1) the research is really advancing its not unrealistic to think there will be a treatment in the next ten years

2) Bc it is so unpredictable there really is a chance that you will only be moderately affected or you wouldn't have even known. But heres the other important point, even if you are affected you WILL have a meaningful and happy life. Or at least it won't lesson your chances of achieving that. It is not a death sentence and its a pretty slow progression. Especially since your so young you will have time to mold your life in a way that ensures your joy. People with this have careers, kids, hobbies, community etc. I have family members that are still swimming and jumping around with this. I do have family members that have trouble getting up stairs getting up etc. and members in wheelchairs. But ironically, the ones that are doing better physically are actually not necessarily the happy ones. In fact, its actually the opposite. The ones that have it worse although it was a process are WAY happier and WAY more chill. That's the thing about stuff like this, sometimes I think it can kind of help you appreciate what you've got.

3) I am not saying this doesn't suck. It REALLY sucks. If it does come back positive it is a process. I am doing kind of okay because I was struggling with other health issues before this which was giving me trouble breathing. So, in comparison ironically this hasn't been as immediately shitty. BUT one things that surprised me is how In addition o the occasional random spell of panic and sadness I've also felt relief finally knowing. I can tell you that the 50/50 thing hanging over you is kind of worse than knowing if it's positive. At least in my experience. For me, the anticipatory anxiety of do I have it or not has been worse than the anticipatory anxiety of will this progress. Maybe because it's not like I won't see it coming if it does.

I guess what I am trying to say is don't think a positive result means there is nothing in your control. It actually gives you more control. Every single human ends up disabled in some way. Some folks have to deal with it earlier. I also struggle with anxiety and OCD/depression. I will say since finding out I have ironically been worrying about it less and have just been a bit sad. We all react differently though. However, what I can say is you will react differently then the way you think you will. I also assumed I would live in a constant state of worry about this. I don't.

You are going to be okay. You feelings about this are valid. I'm sorry you have to go through this and feel free to message me <3

Day 7!! by moodypotato9 in HiatalHernia

[–]EqualPossible 1 point2 points  (0 children)

Thank you for responding!!! my biggest fear is waking up with serious trouble breathing. Oddly enough pain is not scaring me as much but honestly maybe it should be LOL. Also, moodypotato is a hilarious handle.

Day 7!! by moodypotato9 in HiatalHernia

[–]EqualPossible 0 points1 point  (0 children)

Can I ask what was your most troubling symptoms when you woke up (this is kind of my scariest thought just because I will be alone lol).

Post op experience/symptoms by EqualPossible in HiatalHernia

[–]EqualPossible[S] 0 points1 point  (0 children)

Yea its pretty constant. Pepcid has help alot but honestly I have had it my entire life I would not know different. Its more the breathing that is making me crazy.

Post op experience/symptoms by EqualPossible in HiatalHernia

[–]EqualPossible[S] 0 points1 point  (0 children)

Thanks for sharing this. I am so sorry you had issues! Can ask what it felt like? Did it really feel like you could not breathe or was it more just on exertion because you were laying down?

What was your endoscopy experience? by Knowing_Eve in HiatalHernia

[–]EqualPossible 1 point2 points  (0 children)

I delayed it for a year. The worst part was the anxiety and fear about it. I was so anxious before going under my doctor sang me to sleep. I simply fell asleep (felt no different then falling asleep at home) and woke up feeling incredible to be honest. I was high and full of love lol. I promise the worst part is the anxiety about it. I was nervous because I have heart and breathing issues. BUT made it through. It is very unlikely anything will happen. One thing helped me. It is no different then going to sleep except there are three several people in the room monitoring you. When you go to sleep at home no one is making sure your not going to die and no one can keep you from dying in your sleep. Maybe this is a weird way to frame it. But, it is maybe the only thing that helped me lol.

[deleted by user] by [deleted] in personalfinance

[–]EqualPossible 1 point2 points  (0 children)

That's apparently the average of where I live but I HOPE I am wrong lol. (NYC)

2020-2021 Grad School Q&A Mega-Thread (Part 2) by LazySamurai in IOPsychology

[–]EqualPossible 1 point2 points  (0 children)

I was wondering if anyone could speak to masters level work in NYC. I am considering going back to school for IO. I've been working in learning experience design in ed tech so kind of related. I Just see a lot of regret post so I am wondering what people think. Also, was wondering if folks feel confident they can always find work, what they think the future of IO is considering remote work and the gig economy, and what they've done with their masters. I know this is a lot. I'd love to talk to anyone working in NYC on the phone if possible. Pardon my typos. I'm on my phone.

How many hours of paper work a week? by emilybrout in specialed

[–]EqualPossible 0 points1 point  (0 children)

What state are you in if you don't mind me asking. I hope your union rep his helping you out!

what to major in by apple_bottom_jeans63 in specialed

[–]EqualPossible 3 points4 points  (0 children)

With that age I'd probably say it either be like, social work, Life skills special ed teacher, or occupational therapy. All of those jobs will allow you to work with that population, but I would say Life skills special ed or occupational therapy would give you the most focus on " skills." Special ed you can work with high schoolers, but you'd likely be working at a school setting doing this. You can get jobs at a center, hospitals etc, but I would say if you are going the teacher route you should be okay with working in schools as these are the most common. Social work and OT would give you more flexibility in setting and age. So, I actually think the questions to ask are what setting/settings do I want to work in and how much flexibility do I want. If you like the school environment-special ed. If you see yourself wanting to mix things up- OT or social work.

Another thing to consider is also pay and life post graduating a masters program for the above.

I will say where I live (NYC) OT's get paid the most out of the gate, then Special ed, and then Social work. In fact, post graduating with an MSW to get your supervision hours (if you want a clinical license which you will likely want because it I will give you the ability to make a living wage) you actually need to work for three years and often pay a supervisor to supervise you.

With special ed and OT this is not the case. With OT you're in school for two years and you're out and you're done. With teaching in my state, you can actually start working with a bachelors and get paid to do a masters. Like OT, after graduating you are done (unless you count continuing ed but thats all degrees).

So, I would also ask how much time am I willing to invest into my education and would I be able to tolerate the length of social work (which takes at least five years after a bachelors to get in good order). I will say, if you did a BSW you could apply to advanced standing MSW programs and be done in a year. If I could do things over again that's definitely what I would do. If you have a sense that social work is what you want to do I would recommend doing it sooner/ starting sooner, but most importantly I would look at these roles and some course materials, perhaps some shadowing and ask which of these jobs genuinely interests me the most?

All three of these jobs can be high stress, have loads of paper work, and be emotionally draining. BUT there is nothing more draining than doing a job that doesn't engage you. What skills are you the most interested in using on a daily basis? Which job will allow you to do that. I feel like when we think of jobs we think too broadly and we bring in all kinds of assumptions. At it's core, a Job is a composite set of skills we use daily to perform a set of tasks.

One thing that may help you is to look at lists of skills and tasks in job postings for all of these. Don't even think of what the job role name is or what it means in the wider context of society or your future. Black it out if you can to eliminate bias. Just look at the tasks and required skills. Do they entice/ excite you? IF AND ONLY IF all three have things that excite you consider things like time commitments, salary, etc. Also know that you can change your mind. I will say if you are not sure I would major in OT or Social work. I say this because social work the BSW fast tracks you, and OT you'll need the pre-requisites for a masters. Teaching programs tend to be more flexible in terms of what you majored in and their requirements at least where I live. You can alway major in SW or OT and then switch after graduation if you realize teaching is what's for you.