Thursday, May 23, 2013

Fundraising - My Hail Mary

Because I don't know what other options I have right now, and yesterday's post just meant I have to try harder somehow not to fall apart. I have to rely on others and swallow my pride.

I've been blogging sporadically almost 10 years, and I haven't really become part of the bigger blogging community. I suppose I'm praying for a miracle now.

Just share it even if you can't help. Thank you.

Wednesday, May 22, 2013

Falling Through the Cracks

I'm a single, disabled mom who is falling through the cracks. I don't do drugs, smoke or drink, but we'll get an eviction notice served on us Friday, and Saturday they'll probably come to repossess my car. I've been disabled 1.5 years and this is where I'm at financially - almost homeless and definitely bankrupt. My disability redetermination was denied and has to go to a judge for processing. It could take a year to see a judge. It's already been over a year since I filed. I'm working as hard as I'm able, yet it's not enough to get out from under the overdraft fees and late payments that keep snowballing.

When I was in the ICU and physical rehab, my emergency savings paid for everything that came due. Not amusing to pay for an apartment I didn't live in for almost six months and insurance on a car I couldn't drive for longer than that. I'm not a huge part of the blogging community, even though I'm loosely connected to a few well-known bloggers. Local friends talked about helping me with a fundraiser for a while, but then I never heard anything else about it. Maybe people thought I was fine or just forgot about me since I was out of sight, out of mind. I think I know what really happened, but I won't point fingers since I've since unfriended this toxic person. To be honest, I thought I'd be fine. Hell, I almost died! I was happy just to be alive and breathing! 

Once I was finally diagnosed with Polymyositis and Interstitial Lung Disease, and got out of the hospital for good,  I was still enrolled in school and took out student loans to survive while my Social Security Disability was processing. I couldn't keep up with the classes and now I'm ineligible. I also couldn't transcribe or write at the same pace I used to. I've barely kept up for the last six months. I'm failing at it completely now. 

After the financial aid ran out, and my tax return was gone, I took out a payday loan to survive for another month or two. Then there's the title loan against my car so we didn't lose our apartment in WI and end up homeless in the snow. Why would I take those out KNOWING how terrible they are and how high the interest rates are? Because by then my credit was wrecked from unpaid medical bills and credit card bills. The little money I was making trying to work was keeping the lights and heat on. There were times I couldn't get 10 minutes across town because I didn't have gas to get there. 

I have family that's trying to help, but I don't come from a family with a lot of money. I often worry how my asking for help will impact them financially. I also don't want to be a burden on my family and ask for help every's humiliating and my pride often keeps me silent. Even though I start earning a paycheck in June, instead of freelancing, there's just no way I can ask anyone for what I need and expect them to come up with it. I was hoping I'd get help from community services instead.

I've called all the community services and they don't have anything to offer or are tapped out until June/July. Our food stamps and insurance coverage barely got approved in time. I had a $40 check in my pocket, $-60 (yes negative) in the bank, the last of our food was gone and had less than 1/8 of gas to get to the food banks. I hope no one EVER has to make these decisions. 

In hindsight, I shouldn't have believed the promises of financial support from someone who has a habit of changing his mind and isn't always reliable, but who has come through enough times to assume he will this time. By the time my ex-husband changed his mind about helping me move for health reasons, I had no choice but to move and used my tax return to make it happen. I didn't know he'd disappear completely after I got to AZ. So I just left most of our stuff behind and hoped for the best as I drove across the country. We had almost nothing when we got here. I thought I'd be able to do enough freelance work until my customer service job started in April -- then my start date got pushed back to June. Now my pain comes from stress instead of the weather.

I worry that my child will be removed because someone (my ex) feels I can't take care of him. I worry that we'll end up in a shelter somewhere here, at best transitional housing. I think about how I already had to let me son go live with my ex-in-laws when I was sick, and how I don't think I can do that again without losing myself. I remember his tears and hysteria to "please just drive us home now" and not being able to whisk him away with me right then. 

Social Security thinks I'm not disabled enough, and my backup plan didn't start when expected. This is how easy it is to fall through the cracks.

PS - I put a PayPal button above, or my fundraiser site if you are moved to help. If not, just share my story.

Wednesday, January 30, 2013

Off The Prednisone

Today is my first day off the Prednisone - again. The last few times I went off Prednisone, I relapsed with loss of muscle strength. I'm hoping that this time it doesn't happen since now I know what's wrong with me (Polymyositis). My inflammation numbers (cpk) have been under 70, but the 60's do hurt quite a bit even though it's below normal. I just really hope I'm stressing out about this for nothing. At least now I know what to look for, whereas before I didn't have a diagnosis.

My Drs. are all positive about my outcome so far. I do have to see the pulmonologist, since it's been a while. I'm sure they'll want CTs or at least Xrays to see how my lungs are doing right now. I've had so many Dr. changes, with Drs. leaving and whatnot, that it's always interesting to see what they'll come up with next.

My hope is that I'll start dropping this weight now that the Prednisone is gone. I have 3 more Dr. appts. coming up in the next 2 weeks. I guess we'll see what they all say!

Sunday, January 20, 2013

Moving Day With a Weigh In

I'm moving all my Polymyositis posts from my 'mommy blog' over to this blog. Since it's all health related, I might as well keep it all in one spot and it doesn't seem right to have all my issues on a blog that used to be all about him. Plus, my first blog about my son's life just falls by the wayside now since he's getting older and I'm feeling like he deserves more privacy. I mostly post about him privately on FB to just family and friends. There'll be updates here about parenting with Polymyositis, but less about my son specifically. I'm pretty sure my homeschooling blog will share more than enough about him anyway.

So watch for a slow but sure migration from there to here!

Current weight - 552.1. My heaviest EVER in life, and yes I feel sick about it and have a lot to say about how upset that makes me. Another time though.