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.

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 month...it'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.

I Almost Died but Didn't

About 2 weeks after my last post in October, just before Halloween, I went into the ER with pneumonia. A few days in the hospital on antibiotics led to respiratory failure, my being intubated on a ventilator, and put into a medically induced coma for about a week. This is the first time I've wanted to write about any of this. Maybe because after almost six months of being in and out of the hospital, I finally have a final diagnosis and I feel almost normal - outside of the physical damage that was done.

I officially have Polymyositis with Interstitial Lung Disease. It's a rare connective tissue (muscle) autoimmune disease with breathing issues. No definitive cause is known, but it means I'm on meds my whole life and I'm officially disabled. I can't lift my arms up over my head, and I can't lift my legs at the hip more than an inch or two right now. I'm in physical and occupational therapy to fix this and I hope to be back to normal in the months to come. I just have to stay on my steroids and anti-transplant rejection drugs forever to keep from a relapse. After experiencing what happens without these drugs, I'll gladly take those two and all the others given to me. I couldn't move without massive pain and my hands wouldn't open or close. Yay drugs, boo side effects.

It started with pneumonia. I couldn't catch my breath so I went to the ER. They admitted me, but I didn't get better so I went to the ICU. Just hours after I got to the ICU, the last thing I remember is saying I couldn't breathe and my chest hurt. Then it goes blank until I woke up a week later. My family says they gave me about a 50% of living while I was out. The hospital basically threw everything they had at me to keep me alive. I had crazy dreams from the drugs, and my son is what I remember most from the dreams. I had a tube down my throat and couldn't talk. I wrote on an eraser board the best I could, and a rolled my eyes a lot when I got annoyed, frustrated or angry. I did that a lot. Not being able to talk sucked. I did make a joke to my stepbro with hand motions (that didn't make sense to anyone but me) when I first came out of the coma. At least I kept my sense of humor, right?

Being in the ICU & having lost the ability to do anything on my own was humbling. Remembering the first time I had to stand up from the bed with a nurse's help is what keeps me going now when I get discouraged. Thank goodness for Xanax because that was the scariest moment of my life, after having been mostly immobile in a bed for weeks. Actually, the bill from that time is pretty scary too. My legs didn't work, my arms only moved at the elbow, and I needed help with everything. I'm trying to forget the tubes being removed and the other help the nurses provided. I could never work in healthcare, ever.

I went to the rehab unit for physical and occupational therapy, but the coughing from the pneumonia made everything so hard. Breathing is usually required when you exercise and I was struggling. I finally was able to walk up stairs and do a lot of my basic care and went home just before Christmas, even though I wasn't 100%. I was supposed to finish my rehab as an outpatient. I felt good and ready to go, but no such luck.

A week after getting home, the first week of January, my mom was here helping me and my right arm swelled up. Back to he ER! I had a blood clot in my right jugular. I was put on blood thinners and had to have my blood tested every week. I also would start to wean off the steriods/prednisone and get sick. I was in the hospital every month, if not every other week almost. I finally had to switch to a larger hospital because they'd had more exposure to my first diagnosis of ARDS - Adult Respiratory Distress Syndrome after pneumonia. I've had so many CT's and Xrays of my chest that I glow in the dark. I have about 8-9 DVDs of images from thouse and the ultrasounds to EKGs that it's just ridiculous.

Once I changed hospitals, I got better diagnosis of what was going on, but everyone kept looking at my lungs as the issue. Finally, this last episode of muscle weakness caused such distress that I couldn't even walk. A muscle biopsy was done along with many other tests, and I joke they went all Dr. House on me, but they found out I have an autoimmune disease. Finally! I was just happy to know what was going wrong with my body and how I can manage it in the future. Once I got into therapy, I rocked it and made super progress. Only two weeks in rehab and going from barely walking to being able to take care of myself at home. The doctors are super impressed and I'm really motivated to get better.

Yeah, it sucks I'm now permanently disabled, but it could be so much worse. My meds will help me get better and therapy too. The worst part of all of this? My son having to go live with my ex-husband until the end of the school year. I miss him more than anything, but I know his being with his dad is the only way for me to get well enough to bring him home. I see him this weekend and I can't wait. There so much more I have to say, but it's time to eat and take more meds. Here's to getting better!