September 2, 2022
It seems Iike every few years, I do a health update, so, with all that has been going on, I'm long overdue for one. I preface all this by saying that I share as a way to spread awareness and process what I am going through. I do not share for pity, and even though a lot of this is challenging, I am also a tough and resilient human. Also, please note that I am not a health professional and these experiences are my own though if you can relate, you may want to look into it more, advocate for yourself, and contact your doctor.
If you like the short version of things or only have a few minutes, here it is:
In the past, I have been diagnosed with stage IV endometriosis (I've had three surgeries so far and things are currently manageable) and fibromyalgia. Other things weren't quite adding up. I kept having other issues, including horrible abdominal problems in addition to endometriosis, injuring myself in weird ways, gaining weight while dieting, and having a lot of pain where that weight sits. My new additional diagnoses are IBS, hypermobility, and lipedema. It has not been easy to live with or get treatment, especially during pandemic times, but I am working hard and advocating for myself. All of this means stepping back from many of my previous activities - personal, social, work, etc.- and choosing select activities that I can balance. Still, with some treatments and surgeries, I am hoping and planning to be able to do more in 2024.
Now for the more extended version of that with many more details:
Catching up after 3rd surgery for endo in 2018 - the pain from endometriosis had returned two short months after I had my daughter, which means the lesions, cysts, and adhesions were growing around the outside of my uterus, fallopian tubes, ovaries, and other various places inside my pelvic cavity. Birth control slowed the symptoms down a little. Still, after three years of regrowth, I had another laparoscopic surgery to remove those adhesions and fix a hernia and an endometrial cyst growing in a previous surgery scar. Because people often mention this, even if I got a hysterectomy, the endometriosis could still return because it exists in cells inside the body and reacts to hormones. Pulling everything now would put me into early menopause and cause other hormonal risks like setting off familial osteoporosis and further arthritis. However, I let them take my fallopian tubes because that removal can lessen ovarian cancer. With the issues I had, I wouldn't feel responsible for putting another kid in the mix (plus, Eliana proudly says she would like to remain an only child).
After the surgery, my pelvic pain improved, but I still had horrible bloating and abdominal issues. My doctor had me look into IBS (Irritable Bowl Syndrome) after I mentioned wanting to get tested for food sensitivities. I already had been on a diet to reduce endo pain and inflammation, further limiting the foods I could eat. After going through an elimination diet and slowly adding foods back in, I found out I had IBS with sensitivities primarily reactive to fructans and fructose. Those two take up a wide gamut of things I used to eat, like apples, pears, onion, garlic, gluten, watermelon, and so much more. While I still have IBS symptoms triggered by stress and anxiety, knowing which food I have to stay away from does lessen the flares.
While figuring out IBS, I was also trying to lessen by pain from fibromyalgia. I had tried different medications for pain and limiting the input from pain receptors. Some made my heart beat rapidly, some made me gain weight quickly, and some did both. They did help with some of the pain, but the side effects were a lot. I was on one specific medicine for a while because it helped with pain and also helped with some depression, but the side effects outweighed the benefits, and I had to get off it. I got dizzy quickly, got clumsier, and couldn't drive long distances or stand for a long time. Pain surged back and made many things very hard, especially while trying to be a good mom, wife, worker, etc.
In 2019, I was still trying to keep up with a lot, despite not finding the right fit for pain management. At the end of the year, I pushed it too hard with many shows, classes, and mural work, all within three months. I got sick - fever, runny nose, coughing - the kind of cough where you gag and have trouble breathing in. I had to cancel shows. I had one fit so bad that I sprained my neck and could not turn my head or put my chin to my chest. My chiropractor tried to fix it, but after he adjusted my neck, I lost hearing on one side and had to take an urgent trip to the spine clinic. After an x-ray and exam, I was given a muscle relaxer and told to rest, but this was just another injury that shouldn't have happened with an able body.
My weird injuries included:
• a sprained neck (from coughing)
• plantar fasciitis (though I have high arches)
• a twisted sacrum (from doing squats)
• bursitis in both hips (from using an exercise band)
• spraining my thumbs (when pulling up my leggings)
• my jaw randomly popping out of place
• constantly rolling my ankles while just walking
• and more.
These didn't happen all at once, so I hadn't connected the dots yet though things started taking focus when both an acupuncturist and a physical therapist suggested a connective tissue disorder like hypermobility. I also was being consoled by a friend who has hypermobility (specifically, Ehler Dalos Syndrome- EDS, a connective tissue disorder), and she thought my issues sounded a whole lot like her own. I mentioned this to my primary, who referred me to a rheumatologist - the same rheumatologist my friend had! He concluded that I had HSD, Hypermobility Spectrum Disorder, bordering on EDS if I could connect that hypermobility to familial traits.
I could and most likely will do a whole post on hypermobility alone, but having this diagnosis was both a relief and a downer. Yes, so many of my injuries, from childhood until now, and my sometimes comical clumsiness can be explained, but there is no cure. There is no way to make your connective tissues stronger. You can strengthen the muscle around your joints to lessen the frequency of injuries, so that is what I did with ten months of specialized physical therapy. Because of how I was holding my body due to pain and instability, I had to retrain how I moved and build up muscles where they were weak or out of balance. I had to relearn how to walk correctly without hyper-extending my knees with every step. I had to get special shoes and inserts to support my arches because every time I stepped down, the high arch flattened with its flexibility and tore the tendon. I had to do special exercises to strengthen my hip flexors because if I sat the wrong way, my hips would clunk out of place. I have to keep these exercises and this body awareness up to not slip back into a more unstable state.
Around the time I started PT, my doctors and I decided that the medication I was on to reduce pain was causing too many issues to keep taking. With me being so dizzy, I had become weaker, and that had made me more prone to injury. After having little success with traditional medications, my rheumatologist recommended IV lidocaine infusions. I had never heard of it! There are little to no side effects, so it didn't hurt to try. Now I can clearly say that a person can become used to a particular pain level and doesn't realize how bad it is until it is suddenly and noticeably diminished. When that medication kicked in, I cried about a half hour after the infusion began. I cried because of the immense relief it brought, where the constant pain was not so sharp, and things felt better.
I was able to get on an every other week schedule for these infusions. It is a commitment because it is around an hour and a half to get the iv in, get the infusion, and then do the rinse the end, but it is worth it to me! I get around eight days of relief, which takes me down a few numbers on the pain scale and allows me to exercise more and be more active with my daughter and the household chores. After eight days, the pain starts to creep in again until I can get the next infusion. It's getting close to two years of these infusions and I am so grateful!! Unfortunately, there is currently a lidocaine shortage, and some of my appointments have been canceled. This is challenging because I am hurting more; pain affects every part of my life, even when I try not to let it. The word is that they hope to have this issue fixed later this fall.
*Congratulations, and thanks if you've made it this far! Just one more chronic illness to go!*
Lipedema.
This will also have its very own post, but I will summarize it for now. Lipedema, also known as lipoedema (and not to be confused with lymphedema), is a disease of inflamed fat cells that primarily affects women. It causes pain and abnormal sensations in the tissues of the legs, hips, and buttocks. (Excerpt link)
For most of my life, I've been aware of my weight through societal and familial expectations and my own harsh judgment. I can't remember a time when I have not been dieting. I could somewhat (with great effort) control my body shape until I was dealing with endometriosis, fertility medications, and then pregnancy. Then something changed, and I could sense it but didn't know what it was. I tried and very closely followed WeightWatchers plans, and then Noom, and then keto/low-carb (which worked a little), but the weight on my body would not budge. I gained whenever there was a medication shift, even with the medications that had a side effect of weight loss.
All the areas that became thicker on my body hurt, too, which is not normal. I thought it was just fibromyalgia, but after feeling some harder lumps within my more squishy places, I researched and found a disease I had never heard of before: lipedema. It is also known as the painful fat disease. The fat cells take in lymph fluid and fat but can't release any (your lymph system transports nutrients, including fat, to the parts of your body that need them), so they swell and cause inflammation. The body responds by encasing the fat cells with thick tissue, which causes the fat to harden. The hardened fat causes further obstruction of lymph flow, presses on veins, and irritates nerves. No exercise can touch those fat cells because they are hard. Lipedema patients often have other connective tissue disorders, and over half have hypermobility. Check and check in my case.
So what can a person with lipedema do when the disease is so painful and progressively debilitating? The conservative measures are compression, an anti-inflammatory diet, gentle exercise (strenuous exercise causes more inflammation), manual lymphatic drainage (MLD), and vibration therapy. These things can slow the progression of lipedema but not significantly improve it, so the next step is to remove the diseased cells. The way to do that is through specialized, high-volume liposuction and sometimes skin removal. Unfortunately, many insurance companies see this treatment as cosmetic when, in reality, it dramatically improves the quality of life of the women who have received it. This is where I am right now:
• diagnosed by two specialists with stage II lipedema, types 3 & 4
• over a year of conservative measures already done
• a functional capacity test that documents my declining mobility
• a surgical plan from one of the leading lipedema surgeons in the states
• a 50+ page packet with all evidence faxed to insurance and now waiting on their response (almost a month now)
With the lipedema diagnosis, I feel relieved to have answers but also so frustrated about this disease. An estimated 1 in 11 women have it, so it is not super rare, just rarely diagnosed. Many people in the medical and insurance fields are not educated enough about this and often shame or misdiagnose women with lipedema.
Also frustrating is the emotional struggle of dealing with an adipose tissue disease. I do my best to love and accept my body through all its shapes and sizes, and I teach my daughter that all bodies are different and that we should focus on health and strength. My judgment on my appearance (not others) is something I am doing hard work on, but with such drastic changes, I don't feel like myself and am uncomfortable in my own body. The diseased fat hurts me and steals my mobility and quality of life, so I will seek to remove it. It will be hard and hurt, but I hope these surgeries (3-4 of them) can make a huge difference for me.
Thank you for reading all this if you have made it here! Maybe 2024 will be my year to get back into things but know for now to my friends and family: I care for you; I have to pick and choose what I do participate in to balance what I can do at that time, I love when you are curious and ask questions, and even if it takes me a little bit to respond, I am always happy to hear from you and how you are doing! If I haven't been as active in things or as social, this is why (other than needing to be extra cautious with pandemic stuff). To the amazing people who are fans of my art, THANK YOU and there will be more art soon because experiences like these bring so much inspiration.
With love, Christy