Grateful

Last week I found myself overwhelmed with gratitude while walking around the grocery store. In recent months grocery shopping has all too often been a monumental task. I frequently did not have the energy or lung capacity to walk around a store or carry groceries, and I typically only shopped for a few immediate necessities, as that was the most I could manage. But last week, I found myself handling this errand with relative ease, not needing to walk at a snail’s pace, and being able to purchase items without worrying about whether I’d have the strength to get them inside and put them away. I was so grateful to be able to manage this task independently and without strain.

It seemed appropriate that I had this experience on a Thursday, which Meredith had long designated as “Thankful Thursday,” when she would list the various things she was grateful for that week, big or small. Though I’ve never officially posted a regular Thankful Thursday list, I try to let Meredith’s attitude of gratitude guide me and remind me that we can find things to appreciate, enjoy, and be thankful for even in the most difficult of circumstances.

My lungs have actually been mostly keeping it together recently despite dropping my Prednisone dose to the lowest it’s been in over 4 months. During the last couple years I’ve consistently gone to pieces as soon as the Prednisone came down, so I’m both surprised and grateful! It’s particularly surprising given that allergy season is in full swing right now, which usually does a number on my lungs. This year I haven’t noticed much impact though, so hopefully 2 years of weekly torture in the form of allergy shots is actually paying off!

We aren’t entirely sure why I’m doing so much better this time around, but there is one strong possibility. As part of my nebulizer routine, I inhale an antibiotic twice a day to help reduce lung infections. I typically alternate between 2 antibiotics every other month to reduce the likelihood of becoming resistant. In 2017, however, one of my antibiotics was not covered by my insurance. They did cover a third antibiotic, but my airways are overly sensitive to that one and when I used it in the past I had an asthmatic reaction. So last year I ended up using one nebulized antibiotic all year long. Medicare, however, DOES cover the second antibiotic, so I used it in February and April. It’s very likely that my current improved lung function is due to having that antibiotic back in play. Amazing what happens when you actually have access to the right medication!

Of course, I know that I very likely will still get sick and end up back on IVs sometime within the next few months. That was already happening before I went off the other antibiotic, so having it back will only take me so far. On the plus side, I’m now building up my strength in pulmonary rehab, and with the port we can throw IV hydration at me as soon as things look the slightest bit sketchy, so hopefully I’ll be more able to fend off infections. In the meantime, I’m trying to cram in All The Things now while I still have the energy and lung capacity for it! In the last 2 weeks I’ve gone rock collecting at the Sterling Hill Mining Museum, spent an evening in NYC, and gone to the Philadelphia Renaissance Faire. Special thanks to Katherine, who helped out with carrying things and driving when I was too tired, and made these fun excursions possible! I am so grateful that things are currently going relatively smoothly and that I’m able to get out and enjoy myself. Here’s hoping I can squeeze in a lot more fun during this round of decent health!

Mourning Meredith

Unfair. The only thing I can think is that it’s so unfair.

Meredith Farrell had so much to accomplish and so much to offer the world. Even while horribly ill and suffering terribly, she did so much and touched so many people. Just imagine what she could have done with her full strength!

I met Meredith when I joined Nina and Danny Butler (another family who knows all about unfair) for a Pesach meal a few years ago. Meredith had an immunodeficiency disorder that made her unable to fight off pneumonia, and she was waiting for a lung transplant due to significant, irreversible lung damage. We bonded over medical issues, and became Facebook friends. I followed her story through her blog and Facebook updates, but honestly did not make a significant effort to be more in touch – because I was scared. I’d already lost people I loved to serious medical issues, and I was afraid to go through that pain again, and the frightening foreshadowing of my own future that accompanies it. But I watched, and prayed, and hoped for the best.

Meredith went through such hell, both before and after transplant. She waited so long, and was so, SO sick before finally getting that long-awaited lung transplant. And then eventually she got a second transplant from the same donor, this time bone marrow, in the hopes that it would address the immunodeficiency disorder and increase the likelihood of the lung transplant being successful. With both transplants, she struggled with complication after complication, often painfully, and was repeatedly hospitalized. During the last couple years it seemed she spent more time in the hospital than out of it. I knew things had been getting worse recently, and I had the horrible thought that she probably wasn’t going to make it. I just didn’t realize it would be this soon.

I hate how much she suffered, and for how long, especially for it to end like this. I hate that her bright and loving spirit was snuffed out far too soon. I hate that there are so many more things that she could have done and accomplished and experienced, but never will.

And I fear. I fear the day when I’ll be the inspiring one fighting tooth and nail against an almost hopeless situation. I fear watching my world get smaller and smaller as my life dwindles down to just trying to survive another day. I fear trying everything, pulling out all the stops, desperately holding on in the hopes of a successful treatment or transplant and a new lease on life – only to ultimately fail. If someone could tell me “It will be excruciating, but in the end it will be worth it,” I could probably persevere. Or if someone could tell me, “There is nothing else you can do,” I could accept and cope with that, and die with dignity on my own terms. But no one can tell me either of those things. Instead, I’ll have to fight and gamble and hope, never knowing whether or not it will actually get me anywhere. And that is terrifying.

It’s. Not. Fair.


To learn more about Meredith’s life, visit her blog at friendsofmeredith.wordpress.com

Disabled Life

Being disabled is surprisingly exhausting.

First there are all the appointments. Right now I have 3-4 appointments every week, 2 of which are 2-hour pulmonary rehab sessions. Lately I’ve also been having additional appointments with specialists about twice a month, so I might be running to 5 or 6 appointments in one week. You’d think being disabled would mean my schedule is wide open, but all too often it’s jam packed!

Then there are all the phone calls and applications. To insurance companies, to pharmacies, to patient assistance programs. I spent about 3 hours this week completing and gathering documentation for just 2 patient assistance applications. Fortunately I’m hyper-organized and was able to find all the necessary documentation relatively easily, otherwise it would’ve taken even longer!

Then, of course, I still have to manage all the regular-person activities: groceries, laundry, etc.

Meanwhile, I’m not exactly brimming with energy. Each of these tasks can take a lot out of me, depending on the day. So I do my best to scatter them throughout the week, and I try not to schedule more than 1 big task per day. Also, some activities that most people don’t even think about are actually energy-draining tasks for me that require planning and calculation. For example, most people probably don’t think that much about showering. Either you shower or you don’t! But for me, showering can be an exhausting, energy-sapping task. So I have to calculate: How am I breathing today? Am I up for a shower? If I shower now, will I still have energy for pulmonary rehab later? How much time will I need to recover after my shower? I have to figure out all the variables, decide how much energy I have to spend and how I want to use it. I do these kind of calculations constantly, every single day. And that alone is exhausting.

It’s also very stressful. It feels like there’s always another appointment I need to go to, another call to make, another application to fill out. And then all my limited energy is sucked up by these necessary tasks, and I have nothing left to actually enjoy life with. I realized recently that my chore to fun ratio was severely imbalanced, and it was making me stressed and depressed. I need to do more than just stay alive – the problem is, sometimes just staying alive is a full-time job!

Fortunately, my health has been holding steady the last few weeks. My pulmonary function numbers are the best they’ve been since August 2017, and I seem to be holding it together even with slooowly tapering down the Prednisone. I’m breathing and walking better than I have all winter, and that makes everything so much easier. And I’m SO grateful for it! Hopefully I’ll be able to take advantage of this current round of decent health, for however long it lasts, and fill my tank with good experiences to get me through the next rough patch!

(For a great explanation of what it’s like to live with a chronic illness and constantly make those energy calculations, check out Christine Miserandino’s Spoon Theory: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

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!