I am sorry to have been so quiet lately—this has simply been my most difficult summer. Hopefully, it's my hardest one of all time. I've had a number of personally TMI medical issues pop up recently on top of my usual lipedema/lymphedema/arthritis issues (the kind of stuff I suspect nobody wants to write about), plus the whole fun challenge of vision changes thanks to getting older. Yay….. ?
After spending my entire life being ridiculously near-sighted with astigmatism to muck things up, I am now dealing with age-related farsightedness. I've finally hit that point with presbyopia where I cannot read or write with my glasses on, but I am nearly blind without my glasses. Meaning, I will take my glasses off to read my phone, but then struggle to find my glasses next to me.
It's gotten really bad.
Last week, I finally got a pair of cheapish reading glasses through Target drive up, but the store only had one strength in stock (+2).
Wearing them alone is no better than wearing NO glasses to read close up, but wearing them OVER my normal prescription glasses allows me to read my phone. It's not so crisp (it's actually too pixilated), but it's still much better than reading my phone (or tablet/paper/book) with my normal glasses on. That's simply blurry.
Whether it's better than wearing zero glasses is debatable, though. I still have to keep the screen pretty close to my face to read, and it's uncomfortable to wear two pairs of frames at once. However, it sometimes feels better to do that at home so I can still sort of see my distant surroundings that way. As soon as I take off my glasses, I've got little hope of seeing much of anything beyond 6 inches from my face.
There's no avoiding it. I am getting older.
On Tuesday, I turn 42.
I first complained of blurry vision in the mornings shortly after I turned forty, but the eye doctor never thought to mention presbyopia. Instead, he wrote me a new traditional prescription. When Sophie last needed new glasses, I was confused that he recommended mini bifocals since she's on ADHD meds. I'm on ADHD meds too.
Eventually, as my close-up vision became even more blurry, and lingered throughout the day, a quick Google search explained all of my symptoms plus the obvious treatment.
I need bifocals.
I wish I'd known two years ago.
Unfortunately, since I am so visually impaired, I have always required high-index lenses and carefully selected frames to help minimize that really extreme “coke bottle” look. High-index lenses are very expensive, however, and it's my understanding that high-index bifocals or progressives are going to be even more costly.
So, I've been kicking around the need for a new appointment and prescription. I keep scheduling an appointment, then rescheduling it. I don't know how much it will all cost but I know it will most likely be more than $400, even with the two pairs deal at America's Best—one pair of sunglasses for driving and one pair for everything else.
For now, I've rescheduled it for when we come back from my medical trip to Idaho.
Yes! We are going to Idaho next week, and I am embarrassingly disorganized about the whole thing. Typically, when I have an upcoming medical trip, I pack really early and get all of my ducks in a row far ahead in advance. This time around, I am lagging behind. The summer's trials seem to have really caught up with me. I don't know how else to explain it.
This weekend, I need to get out to our storage unit to grab our luggage, and I still need to arrange some transportation to the airport. I have to look up transportation from one of the airports since I'm not positive that i can climb into any old shuttle.
I will need to figure out things like laundry, since I have three pairs of compression socks I wear daily and we'll be gone for eight days. I also need to figure out meals for the travel days and a couple of nights in Minnesota. I need to decide exactly how I'm going to manage my compression gear and bathroom needs on our travel days. Using airplane bathrooms can be a real challenge for me and the compression garments make it even more complicated. In the past, I've bought disposable adult incontinence underwear as a backup and should probably do that again. And probably dig out of post-op compression pants if I can find a pair.
To be honest, I have a lot of nerves about traveling right now. I feel “as big as a house” and my poor mobility has sucked the life out of me lately. So, I'm just hoping to keep up.
Yesterday, I at least (finally) ordered a new cane that should arrive in the mail on my birthday to help with our travels.
Daily life is just very daunting for me lately. That's what's made this summer so difficult. That's what's made me fall way behind in every aspect of my life. Daily life—getting up, getting dressed, getting up or down the stairs, taking showers, getting to therapy—it all takes such an enormous amount of time and energy for me.
I have been feeling like a super crappy mom as a result.
Since my progress hasn't been swift or linear, I find that makes me have a lot of conflicted feelings about my upcoming birthday, too. About getting older and simply struggling right now.
On Friday evening, Sophie and I are going to fly out to Minnesota, stay a couple of nights at a Mall of America hotel, see my sister, and then fly down to Idaho. In Idaho, we will meet the dear friend who has arranged all of this for us, and who is generously putting in her time, energy, and resources into the desire to help get me back on my feet. She recommended treatments with Dr. Molly Brown at her Centered Clinic, where they deal a lot with challenging medical conditions, including chronic pain, arthritis, and trauma.
Our friend has done so much (that's an enormous understatement) to make this work, from getting the plane tickets and Iowa Airbnb, to taking care of Sophie and making our meals in Iowa. Sophie is very excited to go somewhere new and help with the cooking while I'm in my treatments. It's such an amazing gift, and with the timing, it's an amazing birthday gift, too.
At the same time, another dear friend has helped us deal with so many challenges this summer (and beyond, but again that's an understatement), and even funded Sophie’s cooking camp plus our hotel in Minnesota—it is very hard to be turning 42 and accepting that sort of help and immeasurable aid due to my setbacks with lipo-lymphedema and arthritis, and yet it's also such a blessing. It's embarrassing to need so much, and yet it gives me hope when someone cares to help us that much. Hope for humanity and the future. Plus, someone believes in me. Thank you.
Needing so much help, on top of being sick so much this summer (often from some of my medications) has made it hard for me to publish at even a fraction of the rate I need to be publishing at.
It's been hard for me to mentally process everything when I am not feeling my best physically (to put it lightly), and feeling the mental disappointment of slow to little progress. It's easy enough to remind myself that things take time, but when I'm sharing my experiences online, I really feel the pressure to shift gears without giving a treatment enough time.
For instance, I've had people suggest I simply quit wearing compression because they think it sounds like such a hassle to don and afford, but the reality is that my legs will keep swelling and I will develop new fibrosis and complications without it.
After three weeks on the tirzepatide, it's obvious that I'm not a “super responder,” and some people have actually suggested that I quit because it's so expensive. Even my PCP warned me that he didn't expect me to lose weight on the loading dose, and I've still got one more of those before I move up to 5mg weekly. Some folks don't experience relief until they get much higher amounts, up to 15mg per week.
Everybody has opinions they want to share to be helpful. This is all probably inherent to talking about your medical issues online, though perhaps even moreso when you crowdfund those costs. So, I keep reminding people how my lipedema went misdiagnosed for 30 years. Treating my issues will take time. I know that now.
At the moment, if I seem frazzled or haphazard, that's likely because I've been overwhelmed. This summer has truly been hard for me in ways I struggle to articulate. I have been feeling my disabilities more than ever before, and checking out of the internet has in certain ways kept me slightly more sane.
Thought I also feel so disconnected.
And even lonely.
Lately, I really hate getting online to talk about the challenges or what we need. I have been trying to wrap my brain around a long list of things like bifocals, groceries, gas, dentist appointments, replacement velcro compression wraps, replacement custom flat-knit compression, Sophie's back to school needs, my increasingly expensive prescriptions, our big rent increase in September, all of the more home therapy tools I need, and my medical copays or coinsurance and our basic, monthly bills.
At the same time, I am trying to research better states for us to live in than Tennessee, and sort out my options with disability since it will take (likely multiple) appeals and still require outside help for my medical needs. The whole bummer with lipedema and lipo-lymphedema being unknown by most doctors or insurance companies extends into government programs like disability. Coverage will remain a huge hurdle, even if I can get disability approved, and that further limits my upward mobility when crowdfunding or even occasional earnings can also get you kicked off.
For now, we are reliant upon help through GoFundMe, Ko-fi, and Substack. And I'm carrying a lot of guilt about just barely making it through the day.
I have to keep forcing myself to look at the bigger picture. I have to keep reminding myself that managing chronic diseases like lipedema, lipo-lymphedema, and rheumatoid arthritis isn't some one and done thing.
I have to keep reminding myself that just because people don't know everything that's on my plate, that doesn't mean I don't deserve to take time to try and breathe. Time to simply take care of myself and manage these diseases.
Today, I am finally trying to figure out some plans for my birthday. Last year, I was maybe feeling more optimistic or simply better about myself, so I actually organized a mini Bluey birthday party. We went out to eat with a couple friends and their kids. I took a couple days off work. I wore makeup. I used up an expiring Airbnb voucher on a local place, ordered cake and birthday treats. We found birthday shirts and cheap little party favors. Didn't I look hopeful last year(?):
This year, I am DRAGGING. I haven't seen my one local friend all summer or managed to have one truly nice, relaxing adult day to decompress. I haven't invited anyone out for my birthday because I'm feeling so much more ugliness and anxiety about my lymphedema and weight gain from my mobility/RA issues. I've been deeply depressed about failing to recreate those couple of good weeks back in May.
I also read from my phone with two pairs of glasses looking like this:
Lol. For real, right? I have to laugh at myself to stay sane for this birthday. I really do.
I can't say that I will have the courage to go out much on Tuesday, but I did schedule Sophie’s dentist appointment for that morning. And I used an AMC gift card to buy us tickets to an old Miyazaki film that evening that Sophie’s never seen.
That might just have to be good enough this year. Sophie’s been talking about how we should have a tea party for my birthday but I am so not there. Please, no more work or planning, you know? And I don't know if I can justify going out to dinner.
Mostly, I'm trying to remind myself that we all have our struggles, but that doesn't mean I will feel this crummy forever. So, take the icky season in stride.
Everything I am doing right now is to actually turn things around and get healthier. To actually get back on my feet. This stretch is perhaps just an unavoidable detour.
To better days ahead!
Happy birthday to you Shannon! 🥳💐I too have experienced the benefits of wearing two pairs of glasses at once… You look great. It could become a Thing! All the very best for your upcoming trip. I’m glad you have some support for you and Sophie while there. You have a heck of a lot of your plate - you always do - and you’re the bravest most hard-working person I know. Sending my very best wishes to you 💐
I’m not sure if you’ve considered it, but getting glasses (even thicker ones with bifocals) is way cheaper at Zenni. It’s what I do, and I also have very bad nearsightedness. Best of luck on your upcoming trip! Although it’s stressful, it will be worth it. And happy early birthday! My birthday is tomorrow, and it’s weird to be turning 40. I hope you continue to keep on the path of doing the compression and taking the meds. I’m so sorry it’s so expensive; it shouldn’t be like that! But you are going to feel the difference in your health by doing the things you know work (albeit slowly) for Lipo-lymphedema. Thirty years is a long time for a disease to go untreated! And will definitely take a long time for your body to heal. But it will ♥️