The past few months have been really hard on me. I have been fairly quiet about why and what’s causing it. I’m not entirely sure I want to share it yet but I keep feeling a nudge to do so and I know there are power in prayers. I also know there is a very high chance I’m not the only one to experience this.
I turned 26 on January 28. So yes, my lovely birthday present was “congrats you have to get off your Mom’s insurance”.
I know I could’ve taken more responsibility and really researched and understood this process. I thought it was maybe a 1-2 month wait to get insurance. I thought I would apply for Obama Care or something of that nature.
Due to COVID it’s thrown a bit more of a curve because you can’t meet in person or anything of that nature. We talked to my Mom’s insurance company and they helped us out by looking into things. They actually discovered I could qualify for medicaid help.
Before I get into this please know this is really, really hard to share. It’s not so much that it’s embarrassing it’s just really hard to know this is where I’m at in my life.
For 3 years I knew I could apply for disability or at least start the process. I didn’t want to deal with it. I was scared of getting denied and what that would do to me. I heard that the diagnosis’s I have wouldn’t be enough. So I kept waiting. Last year with the pandemic I thought I would really get a head start on this since I was home. Well I didn’t. I always would say I can’t apply for social security disability yet because they don’t know the big diagnosis.
A few days ago I realized why I was holding on to that so much. I was saying I wasn’t ready because I didn’t have the big diagnosis which is true, but the truth is that I wasn’t ready because I wasn’t ready to admit it. I wasn’t ready to see how sick and disabled and how much independence I lost on all these legal papers. I wasn’t ready to process this.
The past few weeks I’ve been so exhausted because my mind hurts. It seems like I’m through the hoops and then 5 more hoops come.
Due to my disability doctors have deemed it best that I not work as much. Each year it get cuts more because I get worse. I can’t work full time and only work 3 days a week – 15 hours a week. I can’t live by myself and I can’t drive. So I qualify to apply for Medicaid. In that process there was a question that asked if you have a physical disability. I didn’t know by clicking that it meant I would be applying for disability.
I had my phone interview with lady from the FSSA office a week or 2 before my birthday. She was really nice and really helpful. We thought we were just applying for Medicaid or to get help with health insurance. She explained that it would be easier and better to just go through it and apply for disability since I have a disability.
I got all the paper work done and all the things printed off and signed. It was hard to see all these numbers and figures. I never dreamed or thought I would be here. I kept thinking I can get better before I turn 26. It’s hard to go through all your medical records and read about your decline.
I thought I was done with everything and got the notification that everything was processing. I decided to call the FSSA a few days ago to check on the progress to see how much longer I would be without insurance. We found out that I also was supposed to apply for social security disability as it turns out these two programs are not connected. We asked the lady on the first phone interview if I needed to do anything and she kept telling us no.
So the next day I called the social security office explained the situation. The guy I spoke to was very nice and said yes unfortunately we don’t go through the same thing so you have to apply for both. He definitely calmed me down and made me way less stressed. I thought okay I can do this. I can make it through this.
I got a phone interview set up for next Friday. During the phone call he had to go over initial things. He first asked what was the nature of my disability which I said I can’t live on my own, can’t drive. I pass out if I stand up for 15 minutes – my joints are painful and I have a lot of fatigue and my joints also swell. He then asked what diagnosis cause this to which I explained what we know right now is POTS (Postural Orthostatic Tachycardia Syndrome) and Severe Fibromyalgia. He asked me how long this has been going on and I said almost 4 years. He then asked what the outlook is – when I will get better. I got pretty emotional. I said well I’ve been getting worse each year and each year my doctors cut the amount of time I can work. He was really nice and even added some humor later into the call which I appreciated.
Since that phone call on Tuesday I’ve been a bit emotional. It’s hard. There are so many things I’m processing right now. I’m processing that my Dad is gone. I’m processing that I’m obviously not married with kids and I don’t have a full time job with benefits. I didn’t go to college. I’m processing what I’ve lost. I talked about some of this last month at counseling but it’s gotten a bit more heavy this week and I’m thankful I have an appointment on Wednesday.
It’s just one of those things thats hard because you knew these things were coming but I didn’t want to deal with it. There is something incredibly hard about seeing these things on legal documents not just medical records and in your head. I have to tell another person how weak I am and that’s honestly what it feels like. I’ve allowed myself to push in and allow myself the space to grieve. It’s ok to be sad this is heavy and it honestly sucks.
This isn’t something a ton of people go through that I can just say help me or when will this get better. I’m scared I won’t be sick enough in the eyes of the medical reporters who look over this stuff.
When my heart gets heavy and overwhelmed I allow myself to process and grieve and then I usually lay it out and pray. I know this life on earth is so temporary. I know if I get denied we will try again. I have a Plan B. For now I did what I can do and I just pray and wait.
Friends if you have a chronic illness and are turning 26 soon please start looking into insurance things now before your birthday. It may help the burden a lighten a little bit.
“I have fought the good fight, I have finished the course, I have kept the faith.” 2 Timothy 4:7