Applying for permanent disability

I've been working on applying for permanent disability since November 2019. If you're keeping track, that's just shy of six months. 

At first their algorithm instantly denied me. Then I had 60 days to contest the denial, which I never did. I didn't contest it because I was busy trying to get copies of my chart, medical records and lab results. That took four months. I also felt determined I could do it all by myself. Hahaha!

My Mama bought me this fantastic book (we love Nolo Press) and offered to help. Again and again. Finally I agreed that it would be better to get some help with his daunting process. Especially given my memory issues and the fact that OH YEAH! She used to do this kind of legal stuff for a living when I was young. 

So after two hours on hold we were finally able to find information about making a late contest and filing all over again. Filing over the phone is the option I wish I would have gone with the first time. It's always better to talk to a real person, especially if your case is complex like mine is.

The woman on the phone was great and got me an interview for today. In 90 minutes to be exact. I authorized mom to speak on my behalf and we spent the rest of yesterday tweaking the information I have compiled and readying ourselves for today.

I'm nervous. If I had been working full time for the last 10 years I would be much less so. But I only worked for money the last year. That could be an issue. We'll see!

Wish me luck. I'm sure this will be a long process.

Daily Rhythm

After all of the holidays, my mom's birthday, my birthday, my son's birthday, I think I have something of a daily rhythm forming and it's really helpful.

I start my day off with a cup of coffee and a hand full of pills, like most Americans, but especially those with any kind of chronic illness/disability. 

Then I spend about 30minutes on some kind of household chore while I have the spoons. Laundry, dishes that kind of thing. After that I move into computer work. These days it's compiling my medical files for SSDI appeal of denial. 

Now I have all my relevant medical records on my hard drive and on my Google drive. There my mom and a family friend who is a PCP can both easily access my files and give me feedback if they notice something missing. AND if anything ever happens to my computer it's all backed up and organized. 

I have some other things in the work as far as SSDI goes, but it requires me leaving the house and is more complicated. It also requires more spoons. This is something I can do bit by bit every morning.

After that I eat something. Usually a banana, but sometimes avocado toast. Or sometimes it's actually lunch time and I have some kind of fish. I shower after I get my grub on.

When I emerge all soft and shiny fresh I usually switch gears and move onto something creative or go on a small errand or adventure with Sweetie and my Mom. Yesterday was rare in that I had the spoons for both. 

My Mom came over and while she was on an important phone call I made my FAVORITE dessert and something I was craving, rice krispy treats. Yes, it is hard for me to make, but it's a challenge I can still do. 

After her call we took my 13 year old "puppy" Sweetie out to our local Arboritum for a very short walk (Mom) roll (me). It was the first time Mom got to drive Pablo. She's in love.

After that the rest of my day is devoted to napping. Then my husband is home from work and the Man Cub is home from college. We all have dinner, watch a show and it's bed time. And no, I have no trouble taking a 2-3 hour nap and going to bed for the night soon after. Not. At. All. 

Not every day follows this flow 100%. Sometimes my Mom comes over in the morning and we spend the whole day together. Other times I don't see her at all and I do my own thing the whole day and maybe roll Sweetie on my own around my neighborhood. But a typical day is tending to follow this pattern and I love it.

Today I have my second cement person coming out. I hope it goes better than the first who totally flaked on me. I'm starting to feel a little more settled in my daily rhythms and even though I'm still struggling a lot with pain, fatigue, dizziness and other issues it does bring me a new feeling of calm that I welcome with open arms.

Disability 2 months in

I've been off work for the last two months due to my disability. During that time I think I've felt every emotion humanly possible. My mother ended up moving back to my town from England (0.8 miles away from me) the week before I had to stop working. It wasn't anything planned. It just shockingly worked out that way. She has been a welcome and wonderful distraction, especially since I stopped driving the same time I stopped working. 

This also means I haven't had much time alone with my thoughts and feelings as any time I'm alone is 100% filled with being disabled. Going to or scheduling doctors appointments, ordering or picking up medications and supplements. Researching my muscle disease. Reading genetic testing results. It's exhausting.

Then of course there's actually applying for SSDI (permanent disability) and trying to rest as much as I can. At least I've mastered the "bed head".

Werk it gurl!

Unsurprisingly I was instantly rejected for disability. After spending the last 10 years in school and working for free it was expected. Their algorithm hated me the second I submitted it. No... seriously. The literal second I submitted it was denied. So now step two is to appeal and try and find a lawyer. Nothing and I mean nothing about being disabled is easy.

I applied to have my student loans dismissed since I can't earn any income right now. The letter I got back in early November said I would hear back "in 30 days." Apparently they meant 30-120 days, which I found out after a phone call and not hearing back. This is holding up my wheelchair van. No way can I take on a huge debt like that till I know I won't have to pay my student loans.

But there are some good things happening too!

The supplements I'm taking for migraines have finally started to help. I still get headaches, but less frequent and less painful. I'm also feeling less dizzy. Still foggy headed so I'm not driving but not like I'm going to spend my life in bed either (which was where I was headed around Thanksgiving.) I attribute that to starting L-Arginine back up again after a crappy medical appointment. 

I also recently purchased some L-Citrulline to try. I read this peer reviewed article about both L-Arginine and L-Citrulline being helpful for the symptoms I was experiencing. I'm also choking less and breathing easier.

And I finally got another patient advocate through my health center. She's been great about cracking skulls with my wheelchair company to get my modifications through. Hopefully soon I'll have the higher headrest and knee abductors that I've needed for Dory for a long time. Also hopefully soon I'll have a van to drive her more places.

Reading this it's easy to understand why I get so angry when people think I just lay around all day. Being an advocate for myself and just being ill is a full time job. 

I'm seeing my wonderful primary care doctor this Friday and we're going to extend my temporary leave (SSI). Then I'm taking a break from all things government till after Christmas and my birthday.