Share Your Scars; EDS & Adenomyosis

Share Your Scars

By Keilani Lime

-Tell us a bit about your condition: When did it begin? What symptoms do you have? (feel free to site accredited sources when speaking to the description of the condition itself and/or typical presenting symptoms)

My periods have always been wonky. They’re never “regular” and sometimes come with really heavy bleeding – and then sometimes only spotting. Sometimes they come with intense mood swings, tons of lovely hormonal acne, and breast tenderness so sensitive I can’t even look at a bra. Same thing with the belly – massive bloating, low back aches, and abdominal cramping so bad I can’t wear anything but dresses and you can just forget jeans. I haven’t worn jeans in…yikes, 8 years maybe?

 In addition to my angry uterus, I was dubbed an “accident-prone” kid. My doctors attributed the wonky periods and zillion dislocations, bone breaks, concussions, weird rashes, allergies etc. to me being a very intense athlete and pushing my body too hard. 

In 2016, I was doing my extreme-athlete-ing thing and had a particularly bad period that would not stop. That was June, and by July, I was admitted to the hospital where I spent a week or so freaking out in lots of pain while my doctors tried to figure out what was going on. It turned out I had Pelvic Inflammatory Disease and though laparoscopic surgery showed no clear sign of endometriosis, my uterus was noted as “lumpy.” I was also diagnosed with Polycystic Ovarian Syndrome. 

A lumpy uterus is usually indicative of Adenomyosis, Endometriosis’s evil sister. In simple terms, Adenomyosis is Endometriosis inside of the uterus lining (NIH Inform). There is no cure or test to confirm except for a hysterectomy and then determination through pathology. However, my symptoms were and are all suggestive of Adenomyosis.

This is where things started to go downhill. I began to lose muscle mass because I couldn’t work out without pain or fainting episodes. I had to stop practicing Bikram. I felt terrible and all of my joints hurt. I was nauseous and throwing up all of the time, and my allergies were terrible.

I ended up in the ED with an ovarian cyst that burst. It felt like I got shot in the gut point blank with a gun. I was so sick I had to make the tough choice to move back home so my parents could take care of me. 

I had to find a new primary care doctor because of the move, and I lucked out, landing one of the best in the area. The first time we met, she measured my Beighton Score (Ehlers-Danlos Society) and clinically diagnosed me with Ehlers-Danlos Syndrome, a genetic connective-tissue disorder that turned out to be the main culprit behind all of my troubles. 

Fast-forward and skipping a bunch, a genetic test confirmed I had Classical Ehlers-Danlos Syndrome (cEDS). Along with that, I was diagnosed with a slew of comorbidities: Dysautonomia, Gastroparesis, Mast Cell Activation Syndrome, Small Nerve Fiber Neuropathy, Raynaud's Syndrome, Scoliosis, Slipping Rib Syndrome, mild Postural Orthostatic Tachycardia Syndrome, Perineural Cysts, Dural Ectasia and more. All of the gynecological issues I had were tied to EDS as well: high-tone pelvic floor dysfunction, Interstitial Cystitis, PCOS, and the probable Adenomyosis. 

As I mentioned, EDS is a connective tissue disorder. A body with EDS does not make collagen correctly. You can think of collagen as the glue that holds (pretty much everything) together in your body. It affects your joints, your muscles, soft tissues, blood vessels…everything.

During all of this diagnosing, one of my doctors found that by some strange mystery, I had severe avascular necrosis in both of my hips (not known to be related to EDS) which required immediate surgery for bilateral total hip replacements. My team still scratches their heads about that one.

-How has this condition negatively impacted your life? Can you share a story where this condition was particularly difficult for you? What other emotions come along when you are having a “bad” day with your condition?

Right around the time I started getting sick, I met an unbelievably, incomprehensibly kind and caring person. He is now my fiancé. He is also handsome. I have always wanted to be a parent. He shares that dream. It hurts my heart to say I won’t be able to give us that dream, at least not in the typical way. 

I am very lucky that I have built a fantastic team of doctors whom I trust deeply. The pain and suffering I endure from the probable Adenomyosis and many gynecological conditions along with the cEDS has become too much for me to bear any longer. My team, and most importantly myself and my fiancé, have decided it is time for me to have a hysterectomy. 

On top of the pain and loss of quality of life, we have all agreed carrying a pregnancy (much less going through labor or a cesarean) would be too much on my body and too risky for me and baby. I am scheduled to go in April 26th, 2023. Ironically, April is Adenomyosis Awareness Month. How timely of me!

Since 2016, I have had more than 50 procedures and minor and major surgeries. This includes dozens of nerve blocks, injections, colonoscopies, endoscopies, laparoscopies, sinus surgeries, neurectomies, nerve transpositions, an appendectomy, brain surgery, and spinal cord surgery. cEDS is no joke. 

As I write this, I am waiting for the date I will have a revision on my right hip prosthesis, which is not sitting in my pelvis correctly. With all of these procedures and surgeries, I have lost nearly all of my muscle mass. Being physically strong was something I took for granted. I can no longer walk without an assistive device, sometimes a cane but usually a walker, and sometimes I use a wheelchair. 

I was extremely proud to be the first in my family to graduate from college. I started working at 15 and put myself through art school, and built successful careers as an artist and respected advertising and marketing professional.

Coming from a low-income family with financial hardships, I vowed to always stay financially independent. As you might imagine, over the years I have built immense medical debt, and I feel profound sadness when I share that I have had to resort to crowdfunding. The GoFundMe will help pay down my medical debt and future healthcare debt… and help me simply stay above water until I can (literally) get back on my feet.

Due to the poor state of my health, I cannot work. A little more than a year ago, I was let go from a job that I absolutely loved while I was still on part-time disability, recovering from the brain surgery. I haven’t been able to work since. I continue to paint and do small shows here and there, but not to the extent I would like to. 

I have lost so much, and believe it or not I have left out large chapters of my story —probably a dozen other problems/diagnoses. I grieve my former self. I am coming to terms with being a person with a disability. It is the hardest thing I have ever done. 

-How has your condition positively impacted your life? Has it brought you closer to a community or particular people? Has it made you grateful for your “good” days? Has it shaped your character in any way? 

One of my favorite quotes is by Eleanor Roosevelt: “It is better to light one small candle than to curse the darkness.” I am learning to better accept these incomprehensible difficulties set in my path, and be more at peace with the things life throws at me. I have found “my people” — or rather, my “zebras,” which is what EDS folx call ourselves — others with the same condition who completely and sincerely understand me, who can empathize with me in ways no one else can. In fact, I have met someone who I consider one of my closest friends because of my illness. 

I have lost my physical strength, but my mind and will is stronger than it has ever been. I feel invincible and at peace (most of the time) despite all that I have to endure and will contend with for the rest of my life. 

Maybe most importantly, I have grown as a person and learned humility and gratitude. There is so much I took for granted as my “former” non-disabled self, and I see how foolish and naive that person was. I never considered the struggles of the chronically ill or disabled. I have found a new purpose: to help others like me. Instead of pride, I fill myself with gratitude for every single day, for my family, my friends, my doctors, my friends, and kind strangers. I am grateful for my art and the chance to pay it forward. 

I’ve become an advocate for those with chronic illness and disability. I sit on various committees, boards, and caucuses dedicated to diversity, equity, inclusion and disability rights. I’ve written a fairytale slice-of-life graphic medicine webcomic about living with chronic illness and disability (@nospoonsforyou on Instagram) with art by another artist with disability, Amy Burns. I am currently working on a series of essays on how to navigate the US health care system with a goal of helping people like me avoid the mud that I had to slog through in order to get where I am today: a place where I can see the light at the end of the tunnel. 

-How do you find emotional/communal/informational support with your condition? Family, friends, loved ones, books, podcasts, blogs, Facebook groups, community meet ups? (Feel free to include the link/information for others to find)

In Vermont we are very lucky to have some excellent doctors despite being such a small state. The University of Vermont Medical Center has an innovative and cutting-edge chronic pain program, “the Comprehensive Pain Program (CPP).” Founders of this program were able to get Blue Cross Blue Shield of Vermont (BCBSVT) to pay for the program’s alternative therapies to treat chronic pain, including Reiki, Therapeutic Massage, Therapeutic Yoga, Acupuncture, Physical Therapy and more. This type of coverage is unheard of and I was lucky enough to have BCBSVT and go through the program. 

To say it helped me is a laughable understatement. I got my mom into the program, and only two weeks in she is the happiest I’ve seen her in years. She also has a new positive outlook on her own chronic pain, and I will be forever grateful to the program for guiding her to that place. There is a group therapy aspect to the program that also integrates teaching the latest science of pain psychology. I found (and my mom thinks the same) connecting with others in my position was incredibly cathartic and uplifting. I should note, you can have other insurance and still go through a version of the program, though the alternative therapies I mentioned are not covered. 

Through this learned experience, I’ve sought out support groups and alternative ways of connecting to others beyond CPP. I’ve found online local, national, and international support groups for people with my genetic condition and Adenomyosis. I take everything I learn online with a grain of salt, but again, I find the connections with people who have walked in my shoes are so important to my mental health. Especially with local groups – I have found sharing information like what doctor is great for X and what other doctor is great for Y in my area has been very valuable information. 

I surround myself with help, including a fantastic therapist, and am not shy in sharing my scars ( 🙂 ) – which I think helps me make it through even the toughest days. I fully believe that holding it in, “bottling it up,” is detrimental to my health. Telling my story, sharing my truth, and giving back to the universe makes me feel good inside, even if I am in physical pain. 

There are days that I don’t want to talk to anyone, which I think is normal, and so I turn to books and podcasts in these moments. I found The Invisible Kingdom by Meghan O’Rourke to be a thought-provoking and insightful read, and the podcast Like Mind, Like Body and its sister app Curable, hosted by co-founder Laura Seago, full of helpful tools and advice, especially for when I want to deep dive into pain psychology. 

-How do you find relief of physical symptoms? What holistic/home remedies do you use? What specific products, brands, practices, rituals, foods, teas, herbs help you find support and relief in your condition? (Feel free to link specific products for readers to find more easily, or we can also do that when we are reading over your interview before publishing it)

I think of my health issues as a giant iceberg blocking me from my true self, my life as I want to live it. Finding relief from symptoms is never easy. In my experience, combining Western and Eastern medicine works the best for me – and that took a long time to figure out. 

My PCP is a naturopath, and my pain management doctor (who happens to be the medical director of CPP) is my sort of “second'' PCP, and he is an MD. Curating a team of top-notch health care professionals has improved my quality of life and has absolutely been the best thing I’ve done to help myself. They have been with me through all of the surgeries and procedures, guided me with nutrition counseling and alternative medicine…all things that have knocked my pain down bit by bit, chipping away at the iceberg. 

I work with a physical therapist regularly and try to do gentle yoga as much as possible. I do breathing exercises and have little rituals like mixing certain essential oil blends to diffuse before bed. I also make sure to follow a low-histamine diet as much as possible so as to avoid symptom flare ups. 

When I can afford it, I do Reiki, acupuncture, and therapeutic massage. Unfortunately, being out of work and (outside of CPP) these therapies are not covered, so I cannot do them often. If they were covered by insurance, I would no doubt feel much better and have to take less pain medication. 

A few supplements, herbs, and essential oils that I use are:

• L-Glutamine by Pure Encapsulations
• Un-Worry sublingual Oil by Wile
• Yogi Tea brand blends: Elderberry Lemon Balm Immune + Stress, Breathe Deep, Bedtime, Egyptian Licorice Mint, Cold Season, Detox, Honey Chai Turmeric Vitality, Kava Stress Relief, Throat Comfort
• Herbs: Kava, Peppermint, Ginger, Holy Basil, Raspberry Leaf, Chamomile, Cannabis, Calendula, Lemon Balm
• Essential Oils: Eucalyptus, Peppermint, Ginger, Frankincense, Palo Santo, Patchouli, Lavender, Clary Sage, Grapefruit, Sweet Orange, Lemongrass, Ho Wood, Myrrh, Tea Tree, St. John's Wort, Witch Hazel, Calendula, Ylang Ylang, and Vetiver. I use Mountain Rose Herbs for essential oils and herbs I can’t source locally or grow myself.

-Has the Vital You products or community aided your condition or mindset in any way?

You’ll never see me without an ice pack or heating pad, and I take an epsom salt bath with an herbal CBD bath bomb every night to relax my mind, alleviate spasms and soothe joints that have been hyperextending or subluxating all day. The baths also help my low back pain and belly pain. I’ve tried dozens and dozens of bath bomb brands, and it wasn’t until I found Vital You that I got the value and quality I was searching for. 

I was in Sacramento for a major surgery on my spinal cord, and it was necessary after the long journey from Vermont (not to mention the major anxiety I was feeling about the surgery) to find a CBD bath bomb. My fiancé and I found a spiritual healing shop in midtown Sacramento, Sunlight of the Spirit. After explaining to an employee what I needed, they looked at me with surprise and excitement and shared that they had just minutes ago received a new brand of CBD Bath Bombs. It was kismet. The employee gushed about how great the company was, and I couldn’t help but get excited as well. I waited for them to unpack the boxes and eventually left with four Vital You CBD bath bombs, some protective gems and an Evil Eye.

I fell in love with Vital You immediately, and connected with them on Instagram. Everything I saw online, I loved. As an amatuer herbalist, I really appreciated their formulations and approach to production with organic and pure ingredients. Being a women-owned-and-operated small business in a largely male-dominated industry was also a plus in my book. 

It’s my experience, and this goes double with Vital You, that it's the small businesses who really care and give back to the community – and go the extra mile to support their customers, like me. Every package I get is wrapped with care and I sometimes get sweet notes of encouragement that make me smile even if I am having a really bad pain day. 

I should say, I’m not just a fan of Vital You’s CBD Bath Bombs: their Deep Relief and Cherished Skin Salves, Aphrodite Massage Oil, and Zen skin toner are favorites. My conditions cause a lot of skin issues and muscle spasms. I am allergic to most chemicals and artificial fragrances, so I can only use all-natural or organic products. These products from Vital You will be in my personal apothecary forever.

-Do you find relief from hemp products? If so, how is it consumed and what symptoms does it help with?

In addition to my other medicines, when I can afford it, I use a combination of CBD and THC cannabis products for symptom relief. I find that a 1:1 ratio of a sublingual oil that I can microdose throughout the day is best for chronic pain relief.

 I cannot wait for the day that cannabis is fully legalized and once again recognized as a medicine, not a schedule I drug. Cannabis has traditionally been used medicinally around the world for centuries and was once in the US Medical Pharmacopeia, accepted and “widely utilized as a patent medicine” (NIH). It makes no sense to me that so many people like me find it useful for symptom relief and can even replace use of opiates with cannabis but it remains federally illegal.

 I worked in the medical cannabis industry for just over four years and have been using cannabis and hemp medicinally for myself for more than ten years. I’ve seen first-hand how cannabis, CBD and THC products can help people. Once legalization happens then maybe one day insurance companies will cover cannabis/hemp products and safe, reliable symptom relief will be accessible to so many more people. Lives will be saved.

-Is there anything else you wish to share about your condition?

One of the most important players on my team is a brilliant osteopath who is doing a series of injections to help ease my condition. This doctor also happened to be the one to diagnose me correctly with the avascular necrosis – every other doctor had missed it. 

I saw another osteopath who guided me through a 12-week ketamine-infusion therapy course to help with anxiety and pain. Sometimes MDs or hospitalists will roll their eyes if you mention you see an osteopath or naturopath, or have sought alternative medicine/therapies like acupuncture or Reiki. I can tell you in full confidence that I would be much more unwell, and could even be in a much more serious state – ie. permanent full-time wheelchair use instead of temporary part-time – if it wasn’t for my osteopath and the alternative medicine I do.

If there is anything I want to leave you with, it is that it is so important to keep exploring, keep your mind open to holistic healing, and be willing to learn and put in the work to build a team of health care professionals who really care for you. Do not settle for someone  that gaslights you or poo-poo’s your decisions. Find the ones that work with you, not for your insurance company or their paycheck. We have a broken health care system and it is extremely hard to navigate, but you’re not alone. Help is out there, just keep that little candle burning. 

Please feel free to follow me on my public Instagram art account @keilanilimeart and ask me anything. I’m always here to help a fellow Spoonie.