A GLP-Fun Adventure

CW: talk of GLP1 medication, lipedema, pain

Hello haulers! Long time, no post. As Meta ruins our lives, I’ll likely be spending more time here and as my treatments change, longer form posts are inevitable. You’re welcome. Lol

Where to begin? Last summer, I was diagnosed with new-onset mixed connective tissue disease autoimmunity. Be ye not fooled, I have always been a bendy maven. The kid who could do all the tricks at sleepovers like putting my legs behind my head, grossing friends out by moving my kneecaps around, and spelling out BLOOD with my ever-dexterous fingers.

She’s still got it.

I played softball from the age of 5 until I started working full time at 15 (one day I’ll tell you the story of how my mom faked a copy of a birth certificate and got the manager of a fast food restaurant to lie so that I could start working 40 hours a week as a sophomore, then took my paychecks) and it was ankle roll after subluxed elbow after ankle roll. If you’re old enough, you’ll remember the Reach toothbrush “flip top head” commercials - my dad called me “flip top head” sometimes because of the hypermobility of my neck.

While I don’t have an official diagnosis of Ehlers-Danlos syndrome, I sure meet some markers.

The reason I even went to the appointment last summer was to establish care with a new pcp I found in my literal neighborhood, but also to talk to her about how awful I felt when I ate, the fact that I’d gained nearly 50 lbs since the previous Christmas despite incredibly healthy eating habits and actually being able to be more physically active than in the past. The other thing I was concerned about was a complete change in my body composition - an accumulation of painful, lumpy tissue on my upper arms, belly, and thighs - along with cuffing (not like, cuffing season, but actual folds and wrinkles) and fluid retention around my ankles. She ran so many labs and actually uncovered a series of issues I was having that I suspected, but no one had ever tested for. Here’s a list of what I was diagnosed with after my labs came back:

• Lymphedema

• Lipedema

• Insulin resistance (can you believe NO ONE had ever checked this?)

• Mixed connective tissue disease

• Vitamin D deficiency

• B12 deficiency

• MTHFR genetic mutation

• Paresthesia of hand (I can’t touch the left or ring finger on my left hand due to intense pain?)

This led to a number of interventions, including a referral to my neuromuscular doctor about my hand who did all kinds of tests and diagnosed me with something called CUBITAL TUNNEL SYNDROME because he said inflammation MOVED MY ULNAR NERVE? Dumb inflammation. In the diagram below, it’s on the bottom inside of the elbow pit. Mine is now inflamed and on the upper inside of my elbow pit. Of course. So anytime I touch those fingers, it feels like I hit my funny bone. For half an hour. Radiating through my fingers and up my arm. It’s agony. I scream. It scares my kids.

Then he diagnosed me with carpal tunnel in both hands too, and I have to wear braces. If it’s not better by February I have to start getting injections. Then, he did large nerve fiber testing and small nerve fiber biopsies again. My large nerve fibers are fine and my SFN has improved!

I also was referred to an amazing physical therapist who specifically focuses on lymph and lipedema. I am in love with this woman. She was so kind, taught me so many cool things like nerve glides (more on those in future posts), diagnosed me with GROSSLY DISPROPORTIONATE upper arms and thighs compared to my forearms and calves, and worked with my pcp to determine that my lymphatic system is failing. Yep. Failing. Like the blood that's part of your circulatory system, lymph fluid is constantly moving. If it stops, lymph fluid can build up and create swelling, usually in the arms and legs. We knew it was happening for a while because my lymph nodes rise and fall through the day, are almost always swollen, hurt so bad I once went to the ER because I thought I had a clot behind my left knee - it was a swollen lymph node. “I can’t put my arms down” kind of swelling constantly in my armpits.

The lymphatic system plays a crucial role in both the immune response and maintaining proper fluid balance within the body. Lymph fluid transports toxins, immune cells, and waste products. And with regard to lipedema, guess what that is? A connective tissue disease.

Not me, borrowed image showing lymphedema on the left and lipedema on the right. Ya girl got blessed with both. Reminder: I had none of this pre-covid.

Anyway. Overall suckage. Uncomfortable. Painful. But my pcp and the pt worked together and fought my insurance company and got me a whole-ass suit that pumps my lymphatic system for me. And because we’d hit our maximum out of pocket, I got this beast:

and this beast:

totally covered. I am grateful and privileged to have a flexible job with great benefits. It makes me angry that this is the only reason I even knew these devices exist.

I am supposed to do both for an hour a day, but I haven’t managed that yet, and I’ll be doing more updates about how that’s going in future posts, too.

As time progressed to December, I also got my sleep apnea diagnosis updated with a new home sleep study, going from mild to mild-moderate. My BMI, which we all know is BS, sent me into the “morbidly obese” category. Can you even? Metformin worked for controlling my insulin resistance, but we tried a test with me off it, and it went absolutely wild. My pcp is great, and she looks up information on long covid because she’s interested and she’s seeing more and more people (still, mfers…still! It’s not over just because you’re over it!) presenting with it. She listens to me, asks me about papers, listens to the podcast (shoutout to Dr. Putrino, I’ve heard a lot of pcps appreciated that one) and as I continued to collect diagnoses and read papers like

https://pmc.ncbi.nlm.nih.gov/articles/PMC8425436/

https://www.sciencedirect.com/science/article/pii/S0306987721002589

https://diabetesjournals.org/diabetes/article/71/Supplement_1/89-LB/145403/89-LB-COVID-19-Outcomes-in-Patients-Who-Started

https://www.diabetesresearchclinicalpractice.com/article/S0168-8227(23)00411-4/fulltext

https://link.springer.com/article/10.1007/s10787-023-01239-4

And then seeing tirzepetide get FDA approved for sleep apnea, we decided to yet again guinea pig me.

The saga began in mid-late December, when she put in an rx for Zepbound. Let me begin by explaining that tirzepetide is a glp1 and it has two brand names, Zepbound and Mounjaro. As of 12/24, Zepbound is FDA approved for weight loss and moderate-severe sleep apnea, and Mounjaro is FDA approved for diabetes.

Here’s how it went.

Attempt 1: PCP submits rx for Zepbound. Insurance denies.

I call and ask why. GLP1s are not covered by my employer’s rx plan. They tell me to call back closer to 12/31 to see if my employer changed their formulary for 2025.

I call back on 12/31. Yes, says the rep, it appears that your formulary will change! Have your pcp submit the rx again on January 2nd!

Attempt 2: PCP puts in new rx for Zepbound Insurance denies.

I call insurance and ask why. GLP1s are not covered by my employer’s rx plan. I give the name of the previous rep, tell them I was told that was changing, ask them to re-check the formulary. No.

I email my benefits manager. She says GLP1s for weight loss are not covered. Sleep apnea and diabetes, yes. However at this point I had no idea it was only for moderate-severe sleep apnea.

Attempt 3: PCP puts in new rx for Zepbound with insulin resistance and sleep apnea diagnoses. Insurance denies. I’m pissed off at this point.

I call my insurance company and I say hey, wtf. They say Zepbound is not covered because my sleep apnea is mild. Would I like her to search for GLP1 alternatives? I’m like, sure. She rattles off a list of ones that ultimately are not covered. In a rare stroke of brilliance, I ask - “Why was Mounjaro not listed as an alternative? It’s literally the same peptide, FDA branded for insulin resistance.”

“It is not on my list of alternatives.”

“It’s the same medication.”

“Mounjaro is not listed as an alternative.”

“I have a wild idea…can you just check it?”

“Sure!” pause, clicks, taps. “Oh!”

“Oh?”

“Mounjaro will be covered for you with no requirement for pre-authorization at $25 a month!”

I message my pcp, she submits for a month of 2.5mg Mounjaro, I have it in my grubby little hands the next day. THE NEXT DAY. For $25.

THANKS, ME! And thanks to my pcp for being patient. hahah there’s a joke in there somewhere.

So, it’s been a week since I started Mounjaro. And I will NOT be publishing any updates about whether weight loss happens, because that’s not why I’m on this. I’m on this because of

https://ctv.veeva.com/study/tirzepatide-reversal-of-lipotoxicity-and-adipose-tissue-dysfunction-in-humans-with-overweight-obesi and https://www.transformyou.com/blog/a-guide-to-lipedema-treatment-managing-symptoms-enhancing-well-being because this shit hurts

And https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2024.1457363/epub

And my insulin resistance. And to try to help keep my sleep apnea from progressing.

I decided to keep a journal. I thought it’d be all about my side effects. Which, it is partially - but what I actually found was I had more good things to write about.

Friday, January 10th

2.5mg in left thigh at 9:00am. Wave of intense sleepiness - not fatigue - at 10:05am. By noon, an overwhelming sense of calm came over me, along with a reduction in fogginess. The only way I can describe the calm is that I suddenly didn’t feel like I had to go into battle for the first time in my life, but especially for the first time since March 2020. By the afternoon, friends I sent voice messages to said that my speech sounded clearer, faster, and my husband agreed. He also said I was struggling less with word finding.

Saturday, January 11th

The night before, I used my lymphatic machine for the first time. I did a full hour on my legs, when I was supposed to do no more than 15 minutes the first time, and I didn’t read that until after I’d done the full hour. You’re supposed to titrate up, because moving all that fluid and the toxins around can cause swollen lymph nodes and headaches - which is exactly what I woke up with. So, I can’t know whether it was the med or the machine, and I really shouldn’t have started both at the same time.

GLP-1s can cause some bathroom issues as they slow motility, and I definitely noticed that Saturday - but not like a full-on problem. Just noticed.

We went to grab a coffee from Dutch Bros and we were going to drive to do some returns and I made my husband bring me home because I was SO SLEEPY. Not fatigued, again, but falling asleep sitting upright, sleepy. This is not something I do. I never nap. I can’t. But last Saturday, I napped for 2 hours. But I woke up and felt great. My head was still clearer, I felt calm, and my friend Megan said my eyes looked brighter and bigger when I sent her a video of myself talking about my day.

The next thing that was super weird was that I suddenly felt more confident in my body? Like I didn’t hate it? And I was flirting with my husband more. I just felt calm and secure.

I told this to my friend who works in public health research and she sent me this paper: https://www.ajgponline.org/article/%20S1064-7481(23)00394-9/fulltext

Sunday, January 12th

I woke up feeling fine, just a mild headache, even though I couldn’t fall asleep until about midnight and I peed 6 times overnight. I was sitting at the counter eating breakfast when I looked down and noticed that the fluid cuff around my ankle was GONE. I wish I’d thought to take a picture beforehand. But it was GONE. and the cuff just under my ankle was reduced to a small line. Again, I had some bathroom issues but not bad, just different. I took some electrolyte vitamins I got a sample pack of: https://brode.co/

and my headache was gone within a half hour.

Monday, January 13th

Something I’ve struggled with terribly since getting Covid in April 2020 is adrenaline dumps at night. Like, repeated ones. Every night. I have only been able to sleep on my left side, and I sleep curled up in a tight ball with my shoulders shrugged up tightly against my ears and my little hands like a dinosaur. If I attempt to sleep on my back, belly, or left side, I have adrenaline dumps. This is what prompted my pcp to re-test my sleep apnea, because she figured I was waking up, not breathing. On Monday morning, i woke up sleeping on my back and realized I hadn’t had any adrenaline dumps overnight since last Thursday. This is a revolutionary thing after it happening every night for almost five years. Revolutionary! I got an alert from my phone saying there’d been a change in my activity levels, and since Friday I’d hit 10k steps OR MORE every day without trying.

This was the first time I had a really hard time eating because I got full so fast. I hadn’t been able to finish full portions all weekend, but on Monday, it took me 3 hours to eat an Aloha protein bar.

Tuesday, January 14th

Remember how I said I spent the last five years sleeping in a tightly curled ball on my left side? Tuesday morning, I woke up on my belly. I was sprawled out like a starfish. Again, I didn’t fall asleep until almost midnight. But I slept well when I was asleep. My daughter came downstairs and told me my skin was glowing and looked clearer, and we all agreed that my t-cell spots (my t-cells have been attacking me from the inside out since late 2022, allowing blood and lymph fluid and melanin through. That resulted in over 200 brown spots all over my body, which have been gradually fading.) looked remarkably lighter. I had absolutely no hunger cues all morning and had to remind myself to eat.

Wednesday, January 15th

This was the first day I had the mildest craving for something sweet. My husband brought home white chocolate caramel cookies from Whole Foods, which I love, and they’d been on the counter for days without bothering me. Wednesday, I looked at them and thought…ooh. But then I forgot. My brain fogginess improved even more and that evening, I took a shower and had all these wild rushes of childhood memories and started connecting them to traumas and adult coping behaviors and basically figured out my whole deal.

This was also the day where I became especially extra sensitive to caffeine. I normally have one cup of coffee and one Diet Dr Pepper daily. Those absolutely gave me the jitters and hyped up some tachycardia. I also didn’t sleep well.

Thursday, January 16th

I’m pretty sure my period is due anytime, and I’m due for another dose on Friday, and I made all the emotional connections the night before…plus we have intense stuff going on at home with kids. I was an emotional wreck yesterday. I’m sorry if I slid into your dms crying. I cried all day. All day.

But I slept great. I was probably exhausted from the crying. But I will note - I hadn’t cried, really cried - for a very long time. I would want to and not be able to.

Today, I took my second dose, and I’ll do another recap next week. But overall, aside from a slight disruption to my sleep (falling asleep at about midnight instead of 10-ish), headaches I realized were because I needed electrolytes, and sleepiness - things went WAY better than I anticipated. Even if nothing else improves - this sense of calm I’ve had every day, except Thursday? Totally worth it. It feels like someone poured honey on my nervous system and wrapped me up in a soft blankie. But not like I’m dulled on an SSRI, and not like I’m experiencing derealization. Just like, I’m here and I can handle stuff. It feels so different from what I’m used to that I’m actually suspicious of it.

I’ll be dosing at 2.5mg every Friday morning until February 7th, when I’ll be going up to 5mg. And I want to be clear, I’m not telling you that you need to try this, or that you should try this. That’s a discussion for you and your providers. But, I’m kind of famous on the internet for doing these experiments on myself so that I can report back on them (see also: I was one of the first people who got access to Pfizer because I worked where it was developed, I tried Novavax early, I took Paxlovid when I didn’t have an active infection to see what happened) so I like to be open and honest about these things.

Fears I had early on:

• I have intense MCAS, so I was concerned about injection site reactions, but I haven’t had any issues.

• There can be issues for people with EDS, MCAS, and post viral illnesses who take GLP1s. Here’s some info from the EDS Clinic, where Dr Sujana Reddy works: https://www.eds.clinic/articles/risks-of-ozempic-and-wegovy-in-ehlers-danlos-syndrome#:~:text=While%20GLP%2D1%20receptor%20agonists,viral%20illnesses%20like%20COVID%2D19.

• People with EDS are also more susceptible to hypoglycemia: https://pmc.ncbi.nlm.nih.gov/articles/PMC11532648/

• I was also afraid of side effects triggering my ptsd, but so far, so good.

• If you have thyroid issues or issues with your pancreas, you should probably avoid GLP1s as well.

At this point, I feel like I should be reading a disclaimer really fast that lists all the potential side effects and then tells you “do not try a glp1 medication if you’ve ever had an allergic reaction to a glp1 medication” or something like

I write a recap every week and send it to my pcp, who will assess and decide if we need to do any labs. I will go in and see her 3 months in, or earlier if we decide there’s an issue. But one week in, I am incredibly optimistic. We’ll see how I feel if I get to 5mg lol.

Please let me know if you have any specific questions, what you’d like to hear more about, and I’ll keep updating every week!

Take care of yourselves this weekend. <3

If you’d like to listen in, I have a podcast about Long Covid called A Friend for the Long Haul - A Long Covid Podcast. It’s currently on a wee hiatus as I get used to a lot of changes here at the beginning of the year, but there are a ton of episodes available with a ton of amazing humans. Check it out on your favorite platform.

You can support me, this blog, and the podcast by helping out with the general everyday costs of staying seated - not necessarily standing - upright as a disabled person. We know how we feel about Amazon, but sometimes needs must: https://www.amazon.com/registries/gl/guest-view/1P65IO4C7RSHU

I also have a shop where I make long covid related silly shirts. I’m currently working on a tattoo series and a spoons series. Proceeds go towards the podcast and towards mutual aid and community care: https://www.bonfire.com/store/a-friend-for-the-long-haul/?utm_source=copy_link&utm_medium=store_page_share&utm_campaign=a-friend-for-the-long-haul&utm_content=default