Too wealthy but not wealthy enough

This week I felt very defeated by medical expenses and government bureaucracy.

Between my social security disability and the long-term disability from my last employer, I make too much money to qualify for Medicaid. I was able to get Medicare as of January due to being disabled for 2 years, however the Medicare copays are pretty outrageous. I crunched the numbers recently and realized that between premiums and copays I’ve been spending about $900 a month on medical expenses. And the costs would be even higher if I didn’t have a grant from the Healthwell Foundation that helps cover some of my more expensive specialty medications, as well as certain vitamins and nutritional supplements. I had hoped, however, that I would qualify for a Medicaid spend-down, in which Medicaid would kick in once I spent enough on monthly medical expenses to bring my income under the income limits.

I went down to Medicaid on Tuesday, and found out that not only are the Medicaid income limits even lower than I expected, but the income limits for the Medically Needy Program that I would fall under are OUTRAGEOUSLY low. An individual on the Medically Needy Program can only make $367 a month, and then the program won’t even cover hospitalization costs! With my income, I’d only qualify for that program if I paid $9,400 in medical expenses within 6 months, at which point Medicaid would kick in and cover most other non-hospital expenses. My bills are high, but thankfully not THAT high – and even if they were, how exactly do they expect me to afford $9,400 a year?? Why on earth would they have LOWER income limits for the medically needy, when we have HIGHER expenses?? And how do they expect us to pay our hospital bills?!

Basically, I’m not poor enough to qualify for help, but I’m also not rich enough to afford my medical expenses. What a fantastic system. I kinda feel like I’m being punished – either for actually trying my best and working for so many years, which raised my disability payments, or for being born with an expensive, life-threatening illness that I have no control over and now prevents me from working. Either way, the government has deemed me unworthy of getting help paying for the medications and treatments that keep me alive. Which is upsetting, frightening, frustrating, and infuriating. And, honestly, pretty damn unfair.

I am very, VERY fortunate that I have a strong social network that is both willing and able to support me. I know that my family, friends, and community won’t let me fall, and I have already received enough support to get me through the next several months if not the rest of the year. But the whole situation is still stressful and unfair. Just managing my health is already an exhausting full-time job; trying to figure out the finances on top of it just adds insult to injury. And then there’s the constant pressure that comes with knowing that you’re living on someone else’s money. Is this the right thing to spend my money on? Do I really NEED new shoes, or a haircut, or meat, or donuts? Should I spend money on the occasional dinner out, or movie, or other leisure activity, or is that a waste of someone else’s charity? Am I allowed to have fun, or is that an unnecessary expense?

And there are so, so many people out there who are not fortunate enough to have my strong support network. What in the world do they do? The sad truth is, a lot of them probably skip medications and treatments, and get sick, and die sooner than they have to, simply because they can’t afford to stay alive. Which is absolutely pathetic in our modern society.

I know that I’ll be ok. But it will be stressful, and I really, really don’t appreciate having extra stress in my life. And I also know that there are many people out there who will NOT be ok, and it enrages me that this is the reality of our healthcare system. The whole situation is simply infuriating.

Do you wanna build a snowman?

Pfft, snowmen are for amateurs. Meet Snowbeard the Wizard! So grateful that I had the lung capacity to handle the exertion and play in the snow today, which was the perfect consistency for sculpting. Special thanks to Frank, my mom, and Katherine for all their help with the heavy lifting, I couldn't have done it without them!

Shameless self promotion

After over a year of artistic laziness, I finally added jewelry to my Etsy shop. Feel free to share!

www.etsy.com/shop/DreamspiredDesigns

Mystery illness

Thankfully I somehow managed to get through this round without any significant respiratory issues. My fever started being more reasonable by Sunday, and most of this week I’ve only had off-and-on low grade fevers. The upper respiratory irritation is also easing, and honestly it never even got too bad. We still don’t know what I had, as the viral panel came back negative, which only means that it wasn’t one of the typical culprits that they test for. Yay mystery illness! I wouldn’t want to be STANDARD, of course, that would be BORING.

I’m still very fatigued, but since my lungs seem to be doing OK I finished up the IV hydration yesterday. I’m staying on an oral antibiotic though just to make sure everything stays under control.

Overall this went MUCH better than I expected. I’ll gladly take a week of fever with minimal respiratory symptoms over a standard cold or any other respiratory virus! But I will also be glad when the remaining fever finally fades and I get my energy back. I’m tired of being tired!

Kinda sick, yet again

I’ve been feeling pretty good the last couple weeks. I tolerated walking and other activities pretty well, and at pulmonary rehab my heart rate was noticeably lower and more stable. I’ve really been enjoying feeling mostly functional for the first time in months.

Wednesday morning I woke up shivering and knew I had a fever. Sure enough, the thermometer read 101.7. I thought I was probably coming down with yet another cold, but oddly I didn’t have any other symptoms – no runny nose, no sore throat, no congestion. I basically felt perfectly fine aside from fever fatigue. I reached out to my doctor, and we decided to start me on IV fluids immediately to help me weather whatever infection was brewing in my body.

Thursday I noticed some upper respiratory irritation and increased dry cough, but still nothing wildly significant. Thursday night however I became increasingly short of breath, and I had to do a nebulizer at 5am on Friday because my airways felt so inflamed that it actually hurt. My fever had also taken a turn for the dramatic and shot up to 103.1. Which meant I got to rush out erev Shabbos during a blizzard to see my doctor, because of course I have to do these things in the most stressful and inconvenient way possible. I thought I was going to be admitted, but surprisingly my pulmonary function numbers were the same as 2 weeks ago, so thankfully my lungs hadn’t taken a hit from the infection. They did a flu swab, but since it takes a few days to get the results I started taking Tamiflu just in case that’s what I have. I also started an oral antibiotic to help keep my CF infections in check while my body battles whatever virus I have. And then I went home and basically slept for the entire Shabbos.

I was EXTREMELY upset when I woke up sick on Wednesday. First of all, I had only felt decent for 2 weeks, and it wasn’t even 2 weeks since I stopped IVs. But also, Purim started Wednesday night, and I was worried that I would miss all the fun. I was particularly bitter after spending all Chanukah in the hospital. I just can’t seem to catch a break this winter!! Fortunately, my symptoms weren’t too bad Wednesday and Thursday, and I was able to costume up and get out and participate in the holiday. Though I wish this illness could have held off just a couple days, I’m VERY grateful that I still got to enjoy Purim!

I’m also very glad that I got to show off the costume I worked so hard on: A rabid Eagles fan, complete with a Philly street pole to climb! And of course, shalach manos in Eagles green, including homemade green hamentashen!