A Very Lengthy Update

Ugh, I hate these things

I'm cross-posting this note, so I apologize in advance for the length of this particular update, and if you happen to see it twice.

This is a rare day where I've got the time to share more than usual in a personal update, and I want to get more of you up to speed.

Like many of you, we are currently affected by the Eastern US heat wave.

Things have been so bad down here that some businesses have had to close to have their HVAC units serviced, including the mall and movie theater. Our AC at home is also struggling this week and simply can't keep up with the high heat index. We've been running fans around the clock to try and get some relief while I set the thermostat higher to give our system a break.

My lipo-lymphedema still flares up in extreme weather, and I find that extreme heat is the worst offender. It causes more pain, more swelling, and depletes my energy. I've had to reschedule the rest of my medical appointments from this week to next week, including my ultrasound. As awful as I've felt lately with the heat, I should note that I do feel BETTER than I did last year. I'm grateful for the improvement. I am still cane-free!!!

Now, I'm trying to balance my flare-up symptoms and routine disease maintenance with our struggling AC unit, and increased laundry needs to avoid another excessively high utility bill. This is one of the biggest challenges about having a limited number of compression garments. In the summer, I need to do so much more laundry to stay clean and dry. At the moment, I also have fewer compression garments to use than normal because of my weight loss, so it's been tricky.

When the heat wave is over, I still need to be re-fitted for new compression garments, but I'm partly dreading the drive to that clinic (it's far and in an area I don't know so well), though I'm mostly dreading the expense of the compression garments themselves. Medical-grade flat-knit compression garments are costly. A full set of garments to get through the week is easily $5K (or more) even with insurance, and they are supposed to be replaced about every six months. I have overextended the use of mine many times over which means they're not only too big because of my weight loss, but they're also less effective and I've had to repeatedly repair holes in the toes.

Velcro reduction wraps can be used instead in a pinch and are great for my changing leg size, but that's another $500+ for two sets of the lower leg garments (only the calves). They're also significantly more hot and stuffy compared to the flat-knit, and often don't help enough with my ankles.

I'm going to have to make some tough decisions soon about how to move forward with the new compression garments I need, on top of my upcoming dental work and braces need.

For now, I'm using the time I would have spent on medical appointments today to work on my book.

For those who don't know, I'm working on a very special forest-themed activity book to publish by the end of the summer, titled "The Forest Is Calling." I've been publishing small updates about it here on Substack and Ko-fi, and am working on creating a dedicated Instagram account for the book to help build up more interest for sales, and to hopefully get me approved for some affiliate marketing programs.

While I do plan on eventually illustrating the book myself, this first edition ebook will most likely use Canva creations until I have the time to do the art by hand. I am very excited about this project and feel it is a positive step in the right direction for my work.

Because the hot weather has made our apartment so much less bearable, we've also paused a bit on much of our housework and working on Sophie's room. In a week or so, I'm getting some help wallpapering a mural sent to us by a dear friend, so please wish us luck and a venture free from tendon injuries!

While I'm busy writing and doing some laundry to keep my compression fresh(er), Sophie is busy reading many library books and working on a local short story contest for kids.

It's time for some good and bad news.

In terms of good news, my back and neck are feeling so much better! Also, my knees are doing very well with just the occasional achy day.

Sadly, I will have to "graduate" from PT next week due to the heat cancelations/rescheduled sessions, but I am keeping up with my PT exercises here at home and will continue to do so to help avoid more injury.

I feel really good about how well I am building up my strength and overall mobility/agility. There are always good and bad days, and tough stretches where my progress feels too small or short-lived, but I can see my overall progress and Sophie can too.

Last summer, when we went on the Idaho medical trip and saw my sister along the way, I had to get around on an electric scooter, and hobble about with a cane. I feel like my sister and the supporter friend who arranged the medical trip wouldn't even recognize me this summer because I've made such great improvements.

I think about that difference a lot because it's easy for me to get weighed down by how far I am from where I need to be to lead a more active and dare I say "normal" life. When I do have a particularly bad day with my pain and mobility, it can be discouraging. I have to deliberately focus on the better days.

One special thing that I'm really hoping to be able to do for Sophie before the end of the summer is to take her berry picking. As I've been working on the forest book, I've been researching more accessible ways to get outdoors despite the heat and my limitations with lipo-lymphedema to be a bit more active for Sophie.

I have very high hopes to get there soon.

Medscape recently published an article on lipedema and my personal experience with the disease, and got my surgeon Dr. Amron to add some of his insight.

I know I've been pretty reclusive this year+ just trying to manage my disease but it was nice to be a part of something bigger than me again.

In terms of bad news, my umbilical infection from my hernia is active again and it looks like I'll be going back on oral antibiotics. I desperately need to replenish my wound supplies for the infection—I had been using Target drive up to pick up refills but have nearly run through the last bit. I really can't afford to spend anymore money as it's all spoken for other bills and needs. And I definitely don't want to end back up in clinical wound care services because those costs are even more outrageous.

So, I've updated our Amazon lists with some of the pertinent items we need, including as many of my medical supplies that are available there that need to be replenished asap. It also includes swim gear for water PT and related tools. For anyone interested in sending tangible support items, that medical supply list is here:

https://www.amazon.com/hz/wishlist/ls/UD9LBSOSOK8C?ref_=wl_share

The extreme weather means we have had to rely on grocery delivery, which is far from ideal since it's more costly in fees and the driver/shopper tips, but it really couldn't be helped when I'm having a flare-up and dealing with my umbilical infection. The good news there is that we were able to get groceries delivered at all—of course, that's all thanks to YOUR help.

A couple of other items arrived for Sophie recently—a Lego Creator set and an American Girl book on manners. Plus another hygiene item for Sophie! Thank you so much—I apologize, but Amazon didn't include a note with either gift so I don't know who sent the last three items. I hope you see this, however, and know they made Sophie’s day! Thank you!

This summer has been a mixed bag.

It's been frustrating (beyond frustrating, really) to struggle so much with the additional setbacks (and medical bills!!!) from my ruptured cyst, hernia infection, and calcific neck tendonitis/bursitis. I've felt like an enormous failure to be earning so little money that I can't keep up with basic bills or afford many of the summer activities that Sophie really wants to do.

On the flip side, I've been very inspired to find ways to get back on my feet while combining Sophie’s love for the outdoors with research on simply getting myself outdoors with my lipo-lymphedema. Sophie doesn't yet know what the book is about (it's a surprise!), but I know she will really love it once I get it finished.

I've had a lot of highs and lows already this summer as I try to balance everything on my plate, so it's especially nice to have something to really pour my heart and soul into. It's nice to have a more specific goal than simply getting back on my feet and improving my strength and mobility. It's also been nice to receive supportive words from some of you.

I am great at second-guessing myself and thinking my ideas are silly or not good enough. I really do believe in this little book being the start of a new and positive direction in my life, and something to help me get to where I need to be health-wise.

Thank you, then, for all of your encouragement and aid. To say this very public journey with lipedema and lipo-lymphedema plus my knee injuries, arthritis, and everything else has been embarrassing is a massive understatement. I have felt so awkward and exposed every time I post about our needs and challenges. I've had many days where I've felt like giving up because managing all of my diseases and health issues feels so hard and too expensive.

I have often felt that I am not worth the great expense.

Therefore, I have had you and Sophie to thank for allowing me to keep going. Even when it feels like I can't go on, you have been there to encourage, support, and remind me why I am here.

Trigger warning (depression and suicide)…

Sophia and I were recently so sad to discover that the young Minnesotan woman behind Save A Fox recently ended her life after struggling to deal with her depression, neurodivergence, and bullying from being so visible online. It is heartbreaking for her whole family and those of us who love the work of Save A Fox.

I must admit I feel such an affinity for those who've felt that bullied online because I've been there myself to some degree. I've been to that place where I don't feel my life is worth living because it feels like everybody hates me, or I am convinced that I am useless and no good for anyone I love.

Online criticism from strangers or acquaintances and others once viewed as friends combined with financial and health woes really is enough to make deeply sensitive individuals feel like throwing in the towel altogether. I've felt that way so much, but have rarely discussed it because I don't want to worry or let anyone down. And I certainly don't wish to leave Sophie with that kind of trauma.

Again, trauma. That's one of the worst things about poorly misunderstood diseases like lipedema/lipo-lymphedema. (Or poorly understood conditions like neurodivergence.)

It's so traumatic. It's traumatic to go through life wondering what's wrong with you and being told it's all your fault. It's traumatic to find out that there is a real reason, a real disease to explain your body and symptoms, and then discover that the treatments can be so inaccessible. It's traumatic to discover how some people will always see you as lazy or defective. It's traumatic to learn that others may make it their mission to tell you how awful they think you are to be crowdfunding for an advanced stage of disease that few people could actually handle on their own.

So, I get it. Sadly, I get the hopelessness. I have felt the sting of online hate mail along with the messages telling me I deserve the ridicule or should at least get a tougher skin because I invited criticism into my life by sharing online. And I understand how folks can't always grasp how expensive this disease is to manage, or how if I wasn't managing my disease, and actively working on improving my health, it would be so much worse for my daughter, who needs one healthy, stable parent.

All that to say, I owe so much to all of YOU who have helped me and Sophie get so far.

I do get so weighed down by the day-to-day management and setbacks that it's sometimes hard to see just how far I've come. How monstrously swollen my body used to be. How much physical pain I've been in at various points of this journey. How things have changed.

Yes, it's been a journey, and yes, I really do HATE calling it a journey, but I don't know what else to call this extraordinarily long road. It's been so long, we've had so many highs and lows, and we're still not done.

Thankfully, I feel confident in saying we are slowly getting there. And when I say "we," I do mean me and my daughter. But I also mean me, my daughter, and you.

There are times when I simply can't share the whole burden of this disease with Sophie because it wouldn't be fair to her. But there are other ways in which sharing the burden is unavoidable as a single family and household. It helps that I can share some of the burden with you. It helps that even on my worst days when I feel scared or useless, that I can remember so many of you still care.

I can't thank you enough for that caring, and I can't thank you enough for how much you've cared for Sophie to help give her as much normalcy as possible while I'm working so hard to get to a better place with this disease and to finally get back on my feet financially.

Thank you so much, for everything you do.

Right now, IF you are looking for tangible ways to help in an especially challenging season.

Donations always help. Donations meet more of my medical bills and some of our basic household bills we can't manage on our own. Venmo and CASH app work well, if you want to give without fees.

Another tangible way to help is through our Amazon lists. I try to keep a variety of needs and wishes on a few different lists to help avoid well-intended but less useful packages that might invite more clutter into our lives. I don't like to advertise these a ton, and Amazon is far from perfect, but they've still worked as an enormous aid when we need shelf-stable groceries or medical supplies, or when folks want to help Sophie enjoy a good break.

Other folks sometimes like to help by directly paying a bill. There is always some outstanding bill that needs to be paid, and many will take payment over the phone from a third party. Paying a clinic or pharmacy directly is usually pretty simple, and for my part it is frankly nice when someone else knows firsthand how my clinic bills really do grow so large into hundreds or even thousands of dollars. At the moment, I am actually thousands of dollars in debt to various providers, and I have thousands of dollars in bills looming over my head that need to be paid before I can get the services completed.

One way to help Sophie directly (other than Amazon lists) is to send her funds to her Greenlight debit card for kids. That money goes straight to her account and isn't associated with the household bills. I used to pay her an allowance this way but couldn't keep up financially. The last time she had any money in her account, she used it for gardening supplies like pots and soil from Walmart.

Finally, you can subscribe to my writing here on Substack. Yes, Substack takes a cut, so if you want to pay directly, that's an option as well if you let me know and I manually add your subscription. In the future, you may purchase The Forest Is Calling once I've finished and published it online, but for now, my big updates about the project will go to Substack subscribers.

If you are ever curious about how to help in these other ways, feel free to shoot me an email. That said, please don't feel pressured to help financially—I have been on both sides of giving and needing help, so I completely understand it isn't always possible to give. Sometimes, just having a kind or encouraging word will do much more than you know.

That's my gigantic, long and rambling update about things I don't really like to talk about. I don't like to talk about debt or medical bills. I don't like to think about how I'm perpetually in the red with so many medical expenses while I'm still not back on my feet.

We have had some huge, huge help recently to make things much less dire than they were at the beginning of the summer. But my medical bills keep sucking up everything each time I hope to even feel like we're caught up, and I've been woefully underestimating the impact of my recent setbacks.

The good news is that I am still improving, still fighting, and still working on getting my life back and giving Sophie the mom she deserves. All with no small thanks to you—you frankly deserve heaps and heaps of thanks for your incredible support.