Gina DellGrottaglia step
Wow, I feel like I've been working on a room-sized picture puzzle for decades and finally beginning to fill in those stubborn missing pieces. I'm not officially diagnosed (yet) but I now know... IT HAS A NAME!!! Lymphedema. LE.
I'm almost 64 years old and I guess it started about a dozen years ago in earnest, though there were likely signs and symptoms since puberty. In '08-'09 I'd have days where I'd stand a lot and skip sleep a lot, after which I noticed severe pain/swelling of my ankles, one time having a friend pry my sneakers off while I sat in a chair moaning in agony.
But in 2012, it really presented itself with a vengeance. A new smartphone and Facebook account in June kept me inside and obsessed all summer (huge nerd here! I found my 'home planet' online). One day in August, after eating several boxes of delicious gluten-free cookies (safe, right?!), one of my feet became bright red, swollen/misshapen, and very painful. I posted the pic on FB, and my cousin quipped "What *is* it??!" It didn't even look human. I kept having bouts of that, increasing in intensity, switching sides, and traveling up my leg(s) more and more each time. I noticed over the next few years that sugar had something to do with it, as well as gluten/carbs, too much standing, and lack of sleep. I'd go to the ER about once or twice a year, and was always diagnosed with cellulitis. The one time I took the antibiotic, it cleaned me out, and the symptoms disappeared within a day! That's when I knew constipation played a huge role. Of course, trying to tell the doctors that fact was a joke. They had me continuously bitten by nonexistent spiders always causing the cellulitis (bilaterally??! haha, puh-leeeze).
One day, in around 2016 or so, an ER doc added a *bunch* of pieces to my puzzle. He said "You've been repeatedly misdiagnosed. This is not warm to the touch, not streaking... not cellulitis. The below-knee skin changes lead me to believe you've got chronic venous insufficiency." He spoke of elevation and compression, prescribed Lasix (which I didn't fill; I used herbs instead), and sent me on my way. I voraciously consumed everything I could find about CVI. But... always wondered... why the bulges and weird lopsided edema at times. Could it be lymph instead of blood? Hmmm. Anyway, I learned to keep it in check until...
In 2019, I moved to Utica, food paradise of New York State!! Usually gluten-avoidant, there was no way I was gonna miss out on Chicken Riggies, Utica Greens, or cannoli, all of which abounded at every eatery in town. Within two months of arriving there, I had to call the ambulance to the ER. It was bad. I told them I had CVI; they diagnosed me with cellulitis. I happily took the 800mg ibuprofen prescription but never filled the Augmentin. I learned to be very-low-gluten instead of gluten-free (seemed to work better) and kinda-sorta low-carb/sugar.
I was doing ok when... *sigh* In late Nov of 2020, I had a cold. On December 5th, I realized I couldn't smell my coffee and it hit me. Was that 'cold' the Rona??? I went on an exhaustive sniff-a-thon throughout my apartment. Garlic? Nope. Onion? Nope. Bleach, cleaning products, soap? Nope, nope, and oh-wow-nope. I enjoyed some 'treats' over Christmastime and began some severe swelling/pain in bilat lower extremities, all the way up to groin. (I call it my Michelin Man effect.) By early January, I was crushed by fatigue, also weird palpitations, drooling/GERD, mild dyspnea, headache, and ever-increasing lower extremity *nonpitting* edema. I googled 'COVID fatigue' and learned of Dr. Fauci's "long haulers" phenomenon: folks who have mild to moderate initial symptoms but are left with worse symptoms long after, most of which I had/have. I also googled 'nonpitting edema'. Lymphedema, hmmm. There it is again. At this juncture, as I write in mid-February of 2021, I'm pretty much immobilized. For the first time ever, I have abdominal involvement. I look like Big Bird, with skinny arms and face but huge belly. Only difference is that I have huge legs as well. My inguinal area is bulging on both sides, actually causing stretch marks! All of this makes it really hard to clean my floors, tend to my feet (which are now weepy and gross). No clothes will button closed. I'm sleeping in a chair because, if I lay flat, I have (mild) breathing issues along with the severe nocturia I always have with LE exacerbations (like q1-2h).
I very recently stumbled upon LE&RN, a Godsend, and am eating up all the content as fast as I can. I find that I need to keep good circadians or I get an uncomfortable nighttime 'electrical surge' or 'buzz' in my legs, which drives me crazy with the need to keep jumping up and limping around; I figure that's the endotoxins talking (screaming?). I bought the Kindle book on diet (Ehrlich et al) and am happily adjusting that aspect... Right now my goal is to be able to get dressed and outside to a podiatrist or, at least, an urgent care. I found a seemingly wonderful LE occupational therapist (spoke on phone) just a 10-minute walk from my home, but he said he needs a referral. I also have a telehealth call set up with the brand new Albany Medical Center postCOVID clinic. Sadly, they didn't seem to want to hear about the LE, which I'm *sure* is a component/result of the postviral picture. I'm hoping LE&RN will find the connection and want to embark on looking into this. I find it all so very fascinating, and I'm sure I can't be alone with this out here. I hope this was meaningful to someone, and... heckyeah, I'm fully onboard. Yessss! Found muh peeps! (besides the online nerdy crowd...). Anything I can do to help the mission, I gladly will. God bless.