Friday, August 23, 2024

Lipedema, Inflammation and Dry Eyes, Oh My!

Earlier this month I shared how abruptly coming off Wegovy (due to insurance denial) caused an inflammation surge in my body, and one of the results was a very painful Dry Eye flare up.

It was so painful. If you have not experienced it before, For me it feels like something is in my eye that I cannot get out, tears streaming down my face, I couldn’t keep the eye open as it gets super sensitive to light, causes a nasty headache, and my eye feels so swollen, and inflamed, just plain ouchie, in all the ways.

I was surprised when I researched inflammation and dry eye syndrome - that there was indeed a connection. I read they even describe dry eye syndrome or dry eye disease (DED) as a vicious cycle of inflammation.

I had learned about DED during perimenopause a few years ago.  Did you know DED is a common symptom of menopause, due to the hormone changes we experience? Like 61% of us, common.

But nobody was talking about possible connection to lipedema, or more specifically, living with chronic inflammation. 

I’ve been more aware of inflammation since menopause, as it has been showing up more in my body, and also in my face/head. The almost overnight inflammation reduction with Wegovy was one of the first things I experienced. So having the inflammation come flooding back, and going through some very painful, seemingly unconnected symptoms, has made the last month extra challenging.

Thankfully the Lipedema Community had great suggestions for DED relief - from supplements, to moisture drops, to the Bruder Eye Mask - thank you delirious4dolphins for recommending it 😍 I purchased the mask and added it to my nightly vibration/meditation self care routine. 

The mask is a moist heat compress that I microwave for 20 seconds on a small plate, and then place over my closed eyes, and it feels really nice. Very soothing. It gets a little too hot right out of he microwave, so I just massage it in my hand for a few seconds to cool it down.

The warmth of the mask causes the oils in our meibomian glands to flow, the oils are the outer protective layer of our tear film that keeps the tears from drying up too fast. Which also helps reduce inflammation and bacteria, which are, you guessed it, common causes of DED.

When you take the mask off, your vision can be blurry (their website says that is due to the oils flowing), it does clear up in a few minutes. But was alarming at first.

Grateful to our lipedema community. Sharing things we deal with, and what we find helpful, is so important, even when we think they may not be connected to lipedema. I realized after purchasing this mask that it is the same mask my eye specialist recommended (number one recommend DED treatment by Optometrists) when I was initially dealing with dry eyedness during peri menopause, I even found the original one in my bathroom closet, but the way delirious4dolphins described it in her comment on my Instagram post made such sense.

Didn’t think I could add more to my nightly self care routine, it is already jammed packed with vibration plate, meditation, deep breathing, self MLD, big 6, etc., but the mask is such a perfect match. It is so soothing and makes the self care routine more enjoyable. 

Friday, August 9, 2024

Lipedema and GLP-1 Month Three


What a difference a month makes... 

Long story short, there is no Month Three on the GLP-1 medication, Wegovy. And my experience has been INFLAMMATION OVERLOAD.

All those wonderful things I experienced with the medication in months one and two, have been reversed back to before taking the medication, and then some. You can read about those experiences here: Month One and Month Two.

So What Happened?
Why Did I Stop Taking Wegovy?

My insurance changed from Blue Cross Blue Shield (BCBS) to Cigna on July 1, 2024, and just like the many struggles I faced getting BCBS to approve the medication initially, Cigna has now also denied this medication. So we are back to step one, getting approved, and then a possible bigger challenge, finding the medication in stock.

Step One: Review Insurance Denial

From what Cigna has said in my explanation of benefits, their actual words:

I was denied Wegovy 1mg because...

  1. My records show that I will not take Wegovy along with exercising and eating a better diet.
  2. My records do not show that I already tried to lose weight for three months or more.
  3. My records do not show that my BMI is >30, or >27 with additional health concerns (ex. high blood pressure, Type Two Diabetes, breathing problems during sleep, etc.)

Each of these denial reasons is absolute BS. I already exercise, and eat healthy, I have tried losing weight for most of my life, and my BMI is well over 30. 

The good news about running the Lipedema Fitness support group for more than a decade, my efforts are well documented, and I have years of visual proof.

Step Two: Talk to My Doctor (again)

I have been in constant communication with my doctor, we have talked a lot about my even considering taking them in the first place, I did not enter into this decision lightly, but currently I am talking to my doctor to find out what was asked of them, and what they provided in their Prior Authorization (PA) to Cigna, so I can understand better where the issue lies. Is Cigna not seeing the details my doctor provided, or did my doctor maybe not provide the details needed? I'm not sure, I'm still waiting to hear back from my doctor. Who I just learned is leaving the practice as of November, another bump in the road that is my health (I'll save that for another day).

Once I know what was asked and how my Doctor's office answered the PA questions, I can either have them resubmit the PA with more details, or I can decide to appeal the decision and include my own documentation.

Medication Shortage Issues

Additionally the 1mg dose was not in stock anywhere in my town. I struggled to find the .25mg in May, and I struggled to find the .5mg dose in June, but ultimately I did find them at a CVS pharmacy a few towns over, and CVS was fantastic to work with, as they would check to see if nearby branches had the dose I needed in stock, if they themselves did not. But nobody seems to have the 1mg. dose, not CVS, not Walmart, not Walgreens, etc., so even if I wanted (could afford) to think about forgoing my insurance, and pay out of pocket, nobody has it in stock, and they cannot tell me when it will be available. And quite honestly, at about $1300 per month, that is not an option for me.

Which has me questioning going through a Compounding Pharmacy. For those that do not know, a Compounding Pharmacy is one that can make customized medications. GLP-1 meds can be made through Compounding Pharmacies, if they are sterile and licensed in the state where you live, due to the shortage of these medications.

Please know that the FDA has advised "Patients and health care professionals should understand that the agency does not review compounded versions of these drugs for safety, effectiveness, or quality." So this is another big decision that I will have to evaluate.

What I Experienced When I Went Off GLP-1

My last injection of the .5mg dose that I was taking in month two was done on Sunday, July 7. 2024. Which means I have been without any medication since then, so about three weeks of no GLP-1.

As I mentioned above, the biggest thing I have experienced is INFLAMMATION OVERLOAD.

Not only did the inflammation return in the areas that experienced a reduction while on the medication, I experienced some other more intense issues from the surge of inflammation in my body due to the abrupt stoppage of the medication.

The first was a Bartholin Gland Cyst. If you have ever had one of these, you know how extremely painful they can be. Since I have had a few of these over the years, I know what the early signs are and thankfully the supplement Serrapeptase works wonders, like immediate relief. Within a couple doses it was gone. This is a supplement I keep on hand as one recommended early on by Dr. Karen Herbst to help with Lipedema. I was unable to take on a regular basis as it caused pain in my knees, and when I stopped it, the knee pain went away, but I do keep it on hand for the cysts.

The second was an eye issue showed up in my right eye. Since peri menopause I developed dry eye syndrome. I wear contacts and went from wearing them daily to being able to wear them about once or twice a week. Did you know it is a common condition for women transitioning through menopause, like 60% common. Did you know that doctors sometimes call Dry Eye Syndrome A Vicious Cycle of Inflammation? I have been doing all the suggested steps to keep my dry eye syndrome under control, like being mindful of air blowing in my eyes, limiting contact wearing, moisture drops, etc. It had been years since I had any issues, and wham last week my right eye began the symptoms. It is incredibly painful and irritating - but ultimately I began using a moist heat mask treatment nightly and that seems to have resolved that issue. If I miss a day or two the pain is right back.

The third has been with skin integrity. Which includes overly dry skin in some areas, and overly moist skin in other areas. Rashes have been challenging in skin fold areas (something that completely stopped while on the medication). Even during the heatwave that was our summer. Now those are back seemingly even more often.

The fourth was some heart beating rapidly since menopause, randomly, no real understanding why, no similarities in what I’m doing when it happens, but on the medicine, none occurred. Could be coincidence, but since I’ve been off they have returned.

So Where Am I Now? (Updated October 11, 2024)

I learned I cannot appeal the insurance denials, my doctor has to, and you can imagine after three attempts my dr is tapping out soon, I had a follow-up apt with her on the 20th of August and she is leaving the practice and said we can try again at the new practice in December. I’m honestly looking into Zepbound straight pay (they introduced a direct through them pricing plan, as they are not thrilled about compounding agencies). Or maybe a compounding version, a trusted Lipedema friend shared where she goes (in my state), and talking to my doctor about it.

Also, there are new obesity ICD-10 codes that don’t include “due to excess calories” which I learned was an issue with the past codes that did say that. The new codes just went into effect Oct. 1st, so more to investigate.

Overall it feels like the process is made to make us walk away from trying to receive medication we should be approved for. We pay more and more for insurance, and it provides less and less.

Friday, August 2, 2024

Rebounding MODs

We know #rebounding is a wonderful way to be active with #lipedema and #lymphedema - even gentle bouncing (where our feet don’t leave the surface of the trampoline) is really good for our #lymphaticsystem and is gentle on our joints.

If you have balance issues adding in a support bar to hold on to is a great MOD, and most manufacturers have them. 

Maybe your balance or mobility require you to be seated, then sitting on a #yogaball or #stabilityball is a wonderful MOD, and they make them super heavy duty now (I’ve seen some are anti-burst up to a 1000lbs).

But did you know you don’t need any equipment? 

You can bounce on the floor with just your body. Many like doing it barefoot, but in cute sneakers like these gorgeous green #cariuma sneakers is good, too. Or whatever brand you like. You can hold on to your kitchen sink or bounce in a doorframe, if you need more support.

In addition to helping move our lymphatics, gentle bouncing can improve our cardiovascular health, strengthens bones, pelvic floor, and muscles and it releases endorphins!!! 

People ask me do I wear compression and sneakers when rebounding, and my personal preference is yes to both. My legs need the support of my compression and it gives my muscles something to work against, and my feet and ankles need the support of my sneakers. 

Others may choose not to wear their compression and/or sneakers and keep all shoe to determine what is best for each of us. But if you bounce on a trampoline without sneakers the surface may be slippery with compression but not hey make grippy socks and those are recommended by the trampoline companies to prevent slipping/falling.

Do you bounce? What is your favorite song to bounce to? Mine still has to be #dancemonkey it is a great cadence for me. But I really need a new rebounder, the squeak of mine distracts me too much, or my family if I have headphones on 😂😁

Another one of my favorite bouncing MODs is in the pool!!!