Masks are doing me in

[Cin]

It's been a while, and I hope everyone is well. I kind of laid low after Lexiecat passed, but I still come here to read other's stories.  Now I'm back and asking for some advice.

I had a lobotomy 1.5 years ago and am okay breathing when unmasked. But slap a mask on me and ... Gaaah!  I have a long one hour commute to work (only 1x/week) and feel like I am suffocating. I am fully vaxed, but anyone here who has had lung cancer knows masking is a no-brainer. Then I have to do some walking and completely lose my breath and have to stop and remove my mask when it's safe to do so to catch my breath. When talking to my bosses and co-workers I lose my breath mid-sentence, it is embarrassing, and I don't socialize much anymore. ALL of this is due to masking.
I finally told work I cannot do it anymore. I might be able to go on long term disability (fingers crossed) and then apply for ssdi (I am 63 if it matters). Has anyone had any experience with this? And what do you think my chances might be? My doc has written me medical notes for a year so I can work from home 4x/week.

other details:  I work at a large university with great benefits.  One person (of three) I work for won't agree to me working from home permanently.

[Scruboak]

I find that the N95 masks are more difficult to use. I don’t use a mask when I’m outside but I live in a very rural area. Have not had to apply for SSDI because I was 67 when diagnosed but go ahead and apply now. Be a good advocate for your needs.

 

 

 

[Tom Galli]

Cin,

I share your difficulty breathing when masked. I have about 30% of normal pulmonary capacity after having my right lung removed and metastatic cancer successfully treated in my left lung. These combine to cause breathlessness with any normal activity, let alone activity masked. I am also fully vaccinated and boosted and note how easily COVID is able to avoid the "vaccine." So, I've isolated during the pandemic staying mostly at home.

My doctors predict a harrowing situation if I ever succumb to COVID so my strategy is to avoid it by isolation. And, this has worked for me thus far. I note your doctors have authored notes about your medical condition but have these specifically addressed the medical impact of you contracting COVID? That would be the avenue I'd approach.

I did the SSDI shuffle years ago. Ironically, after my first failed pneumonectomy, I was declared disabled by Social Security. I didn't feel disabled and went back to work for 6 years. Then after additional cancer treatment and pulmonary capacity problems piled on, I applied for disability and it was denied. I had to retain a specialized law firm and undergo medical examinations by several consulting doctors to bolster my SSDI disability application. Here is a blog I wrote years ago that has some tips and tricks for a successful application.

Stay the course.

Tom

[Minh]

I would sign up for short term disability for the first year. And then go onto extended disability for the second year. After that, your employer disability administrator will automatically help you apply for SSDI. And they would provide legal counsel service to help you every step until you get approval for SSDI. While you are on disability, your health care is fully covered by your employer. And your disability income may be half of your current monthly working salary which can be more than your social security monthly income if you were retired. By the time you exhaust your short term and extended disability periods, and waiting for SSDI approval period, you should then qualify Medicare at age 65.

Also, since you work for a university, you should be able to make monthly withdraw your 457b (at any age) and 403b (after 59 1/2 yo) without any IRS penalty. 

[Cin]

Thank you for the replies. I have next week off so I can start researching the process. It is possible work will offer me the choice to work full time from home in which case I would gladly accept and hang in there for another three years. And then I would have time to save like crazy.

But if not, I am really worried about whether they will determine I qualify for long term disability. If anyone has received that, what were your symptoms and what did you need to do to qualify? I had a RU lobectomy, no.chemo. Like Tom above, I feel I function well enough unmasked (like taking a walk), but masking feels like I am being smothered. Sometimes I feel like a baby since I only lost one lobe, but the breathing problem is real.

I am lucky to work at a large New England university so my benefits will help me through this. I will have ten years there in 2 months.  We were one of the first to shut down during the first covid wave and all WFH, so they take it seriously.

[Cin]

One more thing I should make clear:  I already have had a medical accommodation for about 1.5 years to work on campus ONE day a week (versus 3 which my co-workers do). I provide an updated doctors note from my primary care physician every 3-4 months that says I have severe sob when walking or talking while masked. I was freaked out when I first wrote my message because the realization hit me that I just cannot continue to suffer for hours while feeling smothered, even though it IS just one day a week. My heart pounds and sometimes I think I will pass out -- It seems like it's gotten worse.  Now that I've thought more, I think I might have a shot working from home 100% since it will only be for ~3 years.  God I hope so.

One of the new guys at work (who is above HR) told me he "thinks our schedules should be equitable.". I kicked myself for not saying, Sure, when everyone gets lung cancer it will be fair. He kept asking when I'd be back 3x; and here I am now thinking 1x is too much.

Thanks for listening to my vent.

[Cin]

Tom Galli, I especially want to thank you! I think you wrote the info on preparing for surgery (which was so helpful to me), and I am just starting to read your blog this morning. You are always helping people and I wanted to be sure you know how much it means to many of us here.

[Judy M2]

I've had too much trouble breathing with a KN95 mask, so I've been using KF94 masks for a long time now. I can breathe so much easier and they are just as effective. I get Kyungin Flax KF94 masks from Amazon. 

[Susan Cornett]

I too have had some issue/aggravation with the N95 masks so I appreciate the info on the KN94. I have two trips coming up where I have to fly so I want to be prepared.