So I am going to just dive right in and say it … one of the hardest things that I had to adjust to is not being self-reliant in every aspect of my life. It’s not just the day to day little tasks, but some of the bigger things in life like having a job to support yourself and going out with friends without needing a ride. The loss of being able to drive myself wherever and whenever I wanted was hard, but what worse was the lack of being able to support myself. The idea of being in my 30s and not only living with my mom but relying on family to take care of my every need was humbling to say the least. Don’t get me wrong they are wonderful, but its just not how I pictured this stage in life ya know what I mean? I went from 32-40hrs. a week job to maybe 30 min. a week. Of that time I was able to scrape together it was rarely consecutive minutes. If I got in a couple of hours that was on a fabulous week. I was so blessed to have such understanding and supportive employers ( https://recoveryforceusa.com/ ) that let me work from home while I was trying to get things figured out. I just remember every week being so embarrassed that my time card showed such few hours. I know it’s irrational, but it’s true. My mom or a friend would have to talk me down from a cliff of self loathing, ’cause I felt like ‘I should be able to do more. I just needed to some how suck it up and take back control over my body’…. as if I had a real say in the matter. They would often times say to me ‘HELLO your body is doing weird things you didn’t ask it to, its ok to rest.’ Then later on after we found out it was Wilson’s they would point out I have a lot of copper built up and healing wasn’t going to happen over night.
I knew all those things to be true, but I also knew that the debt collectors would still come knocking. I didn’t have time to be sick. I mean if I can be frank I had/have a ton of school loans to pay off and car payments and insurance! Not to mention paying for a ton of tests and doctors visits and finally crazy expensive pills. I needed to earn some serious income stat! But on the flipside of that coin was this big ugly thing called pride. The idea of starting a digital funding account or signing up for welfare freaked me out. I was like UH NO! I got my college degree so this situation would not happen! I had just finished Financial Peace University so I could get out of debt and get a house. I mean that “just in case fund” I had just started got me through a few months, but it wasn’t enough to cover the debt or any other monetary needs I had.
After about 5 months into the chelation I finally was able to start working a little again and this time for a friend with an etsy business sewing star wars hats ( https://www.etsy.com/listing/512250785/imperial-officer-hat-code-disc-notch-cap?ref=shop_home_active_15 ). So now I can pay insurance and sometimes if I have a good couple weeks where I can get more than 2 hrs of work done I can buy a few other small nessesities. Yay! For small steps and big blessings. After a few months of “working” like this is when I finally broke down and admitted maybe really did need to get onto welfare. Not gonna lie, it was a tough pill to swallow that I needed help from the government… I may or may not have cried during my first interview to get into the welfare system…. and then cried again when I got denied the first few tries. Not mention trying to figure out the system is really hard if you aren’t well versed in legal jargon or health care in general. I highly recommend the following:
Go in person to the Medicaid office when you apply:
Some of the lingo is really confusing and misleading and there are people there ready and willing to help you understand what you are signing up for.
You want to come back again after they have given you a list of what they need from you and turn it in, in person. Mainly, because when they fax it they give you a receipt of proof that you sent it in. Which is very important our first round with this we did from a fax machine out of our own choosing so there was no proof that we had sent in all the papers… some how some of our pages got lost. This doesn’t not happen with going in because their system has a lot more checks and balances to keep things like this from happening. AND IT DOESN’T COST YOU!
Whatever information they ask for make copies for just in case you need it for something else or need it again. The copies also helps 2 fold:
You can file all the originals away.
You have packet ready to go to send off or bring to an interview if they ask for one.
Watch the mail for their response and follow what ever it says to do closely if they say they denied you get on it ASAP! I missed my cut off by a week!!! So I had to reapply all over again.
Keep a folder/binder of all your medical records organized by year and month for quick and easy reference.
You will not only need this for Medical, but also if you apply for Disability.
When applying for Disability the likelihood of you getting it on the 1st, 2nd, or 3rd try is pretty unlikely unless you have other health complications.
For Disability get a lawyer
Specifically one that doesn’t charge you until they win your case. And then it comes out of the settlement.
Be ready for this to take longer than a year to get approved so don’t wait like I did to really push to get on Medicaid. Yes they have something else for when you are on disability, but you aren’t there yet so you need something.
In my state it can take up to a year to get in to see a judge. Which going to court is one of those final steps.
dI know that last bit sound kind ridiculous and I totally thought the same. Anyone who saw me knew there was no way I could hold down a real fulltime job. One of my friends siblings has MS and even she had to lawyer up to get on Disability. Its just crazy. Every time I have appealed they’re response is ” you just have Wilson’s disease no biggie. You just need to change your career path and you will be fine.” Ha. *cue eye roll*…and some big tears of frustration. That is when I went for the big guns and got myself a lawyer and they handled everything. They are kinda awesome like that. The best part is they already get the lingo and are willing to explain every last detail to me and I can file with confidence.
I know applying for government help can be scary and humbling. It definitely was for me just remember one step at a time and don’t stop asking questions. These are just some things I learned the hard way and wished someone would have told me from the beginning. And never forget to Live a Life Worth Fighting For and keep fighting to keep it!
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