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.

Saturday, July 28, 2012

Gaining not Losing

I'm so mad. I don't know if it's the meds or my laziness that's got me gaining faster than a holey bucket, but it sucks.  I'm heavier than when I got sick in the first place.

Time to get serious about this stuff because I can't manage my health issues and medications and keep gaining weight.  I want my face back.  Moon face sucks.  Thank you Prednisone. I want off the diabetic meds too but gaining weight isn't helping that either.

Joined the local YMCA to hopefully keep exercising since I graduated out of physical therapy recently.  I'm hoping I can at least slow the creeping pounds until I figure out if it's the meds or my lack of activity.

I hate being sick and on meds that make me swollen and hungry. I need motivation.

Friday, May 25, 2012

Starting a New Life After Almost Dying or How Polymyositis Changes Everything

Sooooo.... yeah, I guess I fell off the diet wagon for a long time, and then this year I find out the hard way that I have a rare autoimmune disease called Polymyositis (PM) with Interstitial Lung Disease (ILD). Basically my body is attacking my own muscles, & the worst parts are the shoulders and hips. Some people have issues with swallowing, but I'm okay there thankfully. I had to go to inpatient rehab twice for weakness that put me in a wheelchair. Each time I got out, I was able to walk with just a cane outside. This time I weaned off the oxygen and my lungs are finally clear of crackles.

It all started with bilateral pneumonia right before Halloween 2011, which led to respiratory failure and they thought the muscle weakness was atrophy from the coma. The coma was to keep me from ripping out the ventilator they put in. It was all actually the start of Polymyositis. It took almost 5 months to get a diagnosis of PM. I was in the hospital at least once a month for a minimum of a week at a time, and I had to switch hospitals to find this out. Come to find out, weaning me off Prednisone was causing relapses! Now I'm on tons of harsh meds, and physical therapy (PT) and occupational therapy (OT) have gotten me almost back to 100%, but not quite.

Ironically, I was in the process of losing weight and was down to 211, but stuck and going back up. In the hospital I swelled up from the high doses of Prednisone I'd be given, and go back down from the Furosemide/Lasix. I have stretchmarks on the sides of my knees as reminders of this. I couldn't even bend my legs at the knees all the way it was so bad one time. At least now I know what to expect when I get Prednisone in the hospital.

This last stay in the hospital, in inpatient rehab, I was doing 2 hours of exercise and one hour of daily living (ADLs) every day while on a 10 carb meal limit. The Prednisone increases my blood sugar and makes me hyperglycemic. So the exercise & carb restriction had me come out of the hospital at 194.7! I stepped on the scale twice to make sure. Since I've been home, I'm back up to 210 with PMS this week. I'm hoping the Lasix brings down the bloating, & next week I'll be discussing tapering the Prednisone so the swelling goes down. I'm inching up in weight, but I don't know how much is meds and how much is lazy eating & not exercising 2 hours a day.

Here's the plan to figure it out: 

Elimination dieting of sugar, dairy & wheat/gluten starting June 4th and each week after, eliminate the next thing. It's first Monday of June. Why wait? Because I'm planning a major event by travelling to Chicago June 1 and trying to 'cleanse' my diet while travelling is stupid & I'll fail. If I fail, I'll give up. I'll be checking with my Drs. on this idea as well before I start. My next step has slowly helped ease me into this somewhat. I'm really going to miss cheese, greek yogurt, ice cream & chips.

Cleaning of the kitchen cabinets and freezer/fridge. I've been 'shopping the pantry' to clean out expired foods, processed foods, etc. Now that I'm paying attention to what's in the food I eat, and how I feel after I eat it, I realize that the garbage I'm putting into my body makes me feel like garbage. The less temptation I have in my cabinets or fridge, the less likely my willpower will give out. So processed, microwavable, HFS, MSG, and similar items are vanishing from my home.

Exercise program: My PT told me to walk every day and each day go two houses further. This starts now, obviously. I also have OT exercises to do with my arms even though I'm not in OT anymore. These keep my strength up where I'm still shaky and hopefully keep the flares at bay. How many times did I wish I was in shape before getting sick?! Having two nurses have to help you, or not trusting someone to be strong enough to catch you if you fall because you're heavier than them sucks. Muscle strength is what helps me to get up off the floor! Motivation is all I need when I'm not being goaded by an evil therapist. Yoga & swimming are on the OK list as well. I'm excited about this. I also think Tai Chi might be good for me for exercise and for keeping stress at bay.

This is going to be really hard. Food is my life. I love cooking. I love eating. No... this is going to be a CHALLENGE! I need to change my mindset. If I overcame not being able to wipe my own butt more than once while in the hospital... I can change my diet and exercise everyday - even if I hate it. Changing my diet should be easy compared to what I've already done so far.

Time to start a new life after almost dying.

Thursday, April 12, 2012

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!