Never Have I Ever

I want to go back in time; since I was 13, my life has very much revolved around a few things, caloric intake, exercise, body image, and the scale. In 1992 my mom and I joined our local community chapter of TOPS (Take Off Pounds Sensibly) and we were superstars.  Mom and I both took multiple awards for weight loss in our divisions and kept it off for several years. My doctor would say that I was (after losing 60 pounds) still 40 pounds overweight for my age and frame. I was 16 and very fit. I worked out for at least two hours every day. Between sporting events and training, I biked long distances, hiked and did exercise videos. I was driven and competitive. My food was weighed and measured. But, no matter what I did, my legs and bum remained disproportionately large and dimply in comparison to my upper body. I had my mother’s ‘shape’, that was my reality, and weight management was always going to be a battle. 

Looking back at how my lipedema has impacted my life and health, I truly believe many things would have been different, had I known sooner. We cannot go back in time, but when we know better, it is our duty to do better. Understanding my body has been a game changer. As my battle with pain became an overwhelming part of my daily struggle, it changed who I was. Having the answers and explanations to why my body looks and behaves the way it does has been liberating. It has literally changed my life and my approach to physical pain; but the psychological and emotional pain that comes with lipedema leaves trauma in its wake. 

I hope to help others become kinder to themselves, I hope to help others advocate with confidence, and to change the conversations in doctor’s offices around weight, pain, and health. I’m going to create links for more information throughout my story to share resources that have really made a difference in my life. I’m learning all the time, not just about lipedema, not just about co-morbidities, but the physical, sociological, and psychological struggles that are prevalent for this women’s health issue.

I’ve met some amazing people along the way who really want to learn and help. I’m going to be sharing lots about them and how they are making things better by not only supporting me on my journey, but are also interested in learning more, and trying to help me with my pain, and they are actively asking how they can help others. All of our discussions draw the same conclusion: if I don’t treat the lipedema, then all these issues can never be resolved. All the issues are closely linked to lipedema. My body is in a constant state of inflammation and has been for decades. There are safe and effective treatments, but because Canada has stayed stagnant in regards to research and treatment of lipedema, we have dropped the ball for millions of women right here in Canada.  

I’m going to let my ADHD guide me on this journey. After all, it’s more like talking with me. I spend a tremendous amount of time trying to organize my thoughts and editing my work and moving things around. I’m going to try to just roll with it and hope you can roll with me.

The Pain Came

Before I knew of lipedema, the pain came.  Looking back I’m unsure how I did it. But I look around when I’m out and I recognize the pain, I see it when other people cross the street, when they get up from their chairs, out of the car, or on the stairs. Some are subtle and some overt. But I know the pain, I know what makes you change the way you move. I know the radiating damage that it can do for extended periods of time. I understand the sting, the short breaths, gritted teeth, trying to look like you are OK, like every step isn’t excruciating, threatening to take you down with every step.

But I was busy, so busy, and tired, so tired, and everything I had was used up, but I did it! I got through the day. Every one of those days for a long time. After my first child the pain was localized to my sacrum. And not all the time, but when I was sitting on hard surfaces for a length of time. Then transitioning to standing was like tearing my muscle from the bone. It was like knives stabbing and twisting within me.  After my fourth child I could barely sit for five mins before the pain would start.  

Then I would just stand more. There was always tons to do, and I liked to keep busy. I knew when I stopped, the pain would be worse, it always was. It impacted my movement so I was not balanced. Limping is very hard on your body and I was doing it all the time. But I could just keep going, so I did, there was so much to do, from the moment I opened my eyes until I hobbled up to bed each night.    

It’s hard to make time for yourself when you have three young children. I once had a gynaecological infection for nine months before I finally talked with my doctor about it and got the antibiotics I needed to take care of it. Managing my pain and taking care of myself became a problem. I would say to myself, “When you go to the doctor next week you need to mention that,” or, “When you get home you need to make an appointment!” But I would return home and get the groceries in the house, and get distracted over and over again until bedtime when I think again, “tomorrow I will look into calling my doctor and asking for help.” Tomorrow was literally years.

X-rays showed a bit of osteoarthritis, but no indication of the cause of my pain. My sacrum was becoming numb when it was not searing with pain. It was moving up my back and my shoulders as well. I could no longer carry a purse, and my hips were killing me. I have an ankle that has been problematic for years, but the pain comes and goes so I can tolerate it, until I can’t anymore. My doctor did what she could with meds to help me manage my pain, but the cause of it was still eluding us. 

As my pain spread I also noticed my fat was becoming painful to the touch.  My husband could barely hug me, my kids couldn’t sit on my lap. My mobility was becoming limited and I could barely push through the pain. Then I met the chiropractor. 

Chiropractor

It’s 2012, we don’t have much money, and I haven’t been back to work since my daughter came in 2010. We got some free tickets to a Health Expo, and we went for a date night. The concrete floor was hard on my back, and my large  disproportionate body caused a tremendous amount of stress on my joints and the pain was adding to the poor integrity of my movement. My husband was carrying my purse, and we were on our way out as I was in a lot of pain. I had talked with my doctor at this point a few times, but drugs were the only things she could offer and she had nowhere to refer me as she could not find a cause.

I stopped to look at a picture of the spinal column and the woman at the booth asked me if I was in pain. Immediately I looked at her with tears in my eyes. “Yes, all the time,” I responded.  She said that she was a chiropractor and that she might be able to help. I was immediately worried about the money. My husband has a healthcare plan, but coverage is pretty minimal. She said that after the consultation she would be able to tell if this type of therapy could be beneficial, and their promo was to bring some donations to the appointment for the food bank and the initial fee would be waived. I left cautiously optimistic. 

Two weeks later I was in her office and she checked my range of motion, my symmetry, she took measurements and felt my back, sacrum, and all my joints. After an hour, she looked at me and said she could help me. I simply broke, I cried like a baby, I could barely breathe. She believed she could help me!!! It was an overwhelming feeling. 

The treatment plan required three visits a week for 12 weeks. This alone blew my health coverage three times over. But what do you do when you are desperate, you do it. Within the first week I was able to give up my pain medications almost entirely. I had a tremendous amount of success. This was a huge time commitment, as I had to travel to see her, and drag my two children plus my niece because I was looking after her at the time. The office was very kid friendly as she treated children as well and eventually I started taking my children for adjustments too.  

This was a game changer for pain management for me. But because I could not fix the underlying problem of chronic inflammation and disproportion, I needed to continue with regular visits. Getting to the stage of maintenance is nearly impossible as I’m always in an acute state of flare, or consistent inflammation. I had to go longer and longer between visits for financial reasons, and sometimes I would go with an acute issue and absorb the cost. It really helped keep me moving and I very much believe I would not have the mobility I have today if she had not approached me that day. I will be eternally grateful to her.

Pregnant Again

Having chiropractic care during my last pregnancy in 2013-14 was a total game changer for pain. I carried better and this baby was much bigger than my last three, and I was bigger too, especially my legs. My arms were growing at this point too. I knew that this would be the last baby, as the swelling was getting worse, and so was the stress on my veins.

After experiencing the death of a child, (I will talk more about that in a later post), it was harder to say no to my husband. He is an amazing father, and the best thing that has ever happened to me. He very much wanted another child. My body was tired, I was so incredibly tired. I got on board and we were pregnant again. 

I never gained much weight with each pregnancy, but I could never seem to lose it. Now it all makes sense, how amazing it is to understand why things are happening, especially in your body. I gained almost exactly 20 pounds with each pregnancy. That’s 80 pounds all together. I started at 220 pounds back in 2005. After the birth of my last child in 2014 I was in so much pain and incredibly inflamed but was at a loss as to why.

My last delivery was a c-section.  It was a “dysfunctional” labour. He was almost delivered vaginally, but he kept sliding back (I usually just need to push three or four times and it’s over). I could not go on and I had so many drugs inside me. I was sent for an emergency c-section and he was so big! Much bigger than the girls and his brother who died five years before he came. I was relieved he was out and safe. His blood sugar had dropped and he headed down to the neonatal unit for observation. It was strange, after three full term vaginal births, that this one would be so traumatic. Recovery was brutal, my emotions were all over the map. 

Usually my stomach comes back right after birth, but not this time. My stomach, after being cut and stapled and healed, now had small pea-like bumps around the incision (just above the pubic bone) and up to my diaphragm. There was a lot of nerve damage and now there is numbness. My stomach is still sore to the touch after about four years, and now eight years out, the lipedema in my stomach is definitely easier to see. And let’s not forget how much easier it is to see things when you know what to look for. 

I was so maxed out with my three children, and I was looking after my sister’s children for a few years, as well as a neighbour’s son for a few months. I had nothing left for myself. I was tired of managing my pain, I was tired of managing my emotions, my house, my weight, etc, something had to give! With so little success around weight loss, I was so tired of feeling like a failure that I decided that I was just going to eat without tons of restrictions. 

I’m In Trouble

I started putting on weight pretty quickly. It doesn’t take long. I was self-medicating (I’m no fool, I know how all this looks), we were having a hard time getting one of our children to sleep, and there were a lot of big emotions in our home. Over a year, I put on about 50 pounds, and at this point I’m teetering on 300 lbs.

As you can imagine, my pain was getting worse, my inflammation was through the roof, and I didn’t realize I had an underlying arthritic condition called psoriatic arthritis. It makes you more prone to things like achilles pain, joint pain, plantar fasciitis and back pain, which are all things that at the time could easily be linked to my weight. As my weight increased so did my pain. I was losing myself to panic attacks and depression, withdrawing from my family, and chronically fatigued. My personality was changing, and I was not the partner or parent I wanted to be. I did all the things I needed to do to keep my family safe and alive. I took care of the house, the car appointments, getting the kids to school, laundry, shopping and paying the bills. For my own health, however, I could only do aqua fitness as any high impact exercise was impossible. I got up to go to my class one day and I couldn’t walk into the kitchen to get my water bottle; I couldn’t walk!  

I did some research and talked with my doctor. I did all the things to help a really bad case of plantar fasciitis. So, I dove into the treatment plan. Plantar fasciitis needs ice, rest, inside shoes, insoles, weight loss, physiotherapy, and Naproxen to manage the inflammation. Walking is necessary, but it took about three months to become functional, and about two years to get to the point where I could wear slippers and sandals and go bare feet sometimes.

During those two years I also started yoga. I needed something low impact, and because of the limited mobility, it seemed to be a good fit. I also needed something I could do after the kids went to sleep that did not keep me awake. This is one of the main reasons I can still walk, as yoga changed my life. 

Yoga

The first day I could not sit on the floor. I took three pillows which acted like a bolster, so I could at least cross my ankles, but not my legs, as they were way too big and painful. I could not lift my body off the floor, I could not even lay down on the floor without pillows at my sacrum. The pain from the pressure on the fat tissue was so bad that it was impossible to tolerate. Rolling over and transitioning was done in stages. I cannot express enough how frightened I was. I was not aware just how bad things had become in the truest sense. 

I could not go on living like I was, and I still had no idea I had lipedema. I did the Erin Mottz 30 day yoga challenge almost everyday for three years. After a year I didn’t always follow the video, but I listened to my body and what it needed, sometimes I would do three videos. I found that I was sleeping better (which was a great change, as my sleep was pretty garbage), and my pain changed. I became stronger and more flexible. In the first six months I could see a difference bi-weekly, I could literally do things I couldn’t just two weeks before. I cut processed carbs and gave up milk. 

I was managing my weight once I got down to 250 lbs in 2018. There are a few things I held very near and dear. My comfort, if this was as far as I could get on my own then at least I would be comfortable in my movement. I would not wear tight clothes that limited my movement. My overall health was getting better, as I’d done many different diets to help with swelling and inflammation. My exercise routine was consistent, and yet I still struggled with daily pain and swelling. But, I had incorporated many things that were helping me feel better and keep my drug intake to a minimum. 

The Discovery

In January of 2020 I discovered lipedema, thanks to the informative documentary, Lipedema Simplified. There was no question, this was it! Finally everything made sense! I dove in deep, watching conferences which had experts talking about lipedema, reading studies, and telling everyone I could, because if this was my experience, how many other women had no idea they had lipedema? It’s not hard to see, honestly. It may be one of the easiest things to recognize, but the tremendous lack of awareness and education have left approximately two million women in Canada isolated, suffering, and feeling absolutely helpless. And the system which is supposed to help them does exactly the opposite.

But there must be help! I have a name, and I can actually address the problem. I’ve been misdiagnosed for 30 years, there must be specialists and research and treatment. This is where my excitement and relief quickly changed to advocacy and legal battles with my province for all those who have been completely left behind, by the system, and by society, who have decided we are not worthy of research, treatment, or specialized care.

When We Know Better, We Need to Do Better

I cannot condemn all things that happened in the past. The doctors who gave me the wrong information, incorrect advice, and the wrong diagnosis; it was what they knew and how they were taught. My beef is that although we’ve known of this disorder since the 1940s, it has remained largely ignored until about 30 years ago. Women started asking questions, and some physicians and surgeons noticed trends among their patients. 

One particular endocrinologist, Dr. Karen Herbst, PHD, MD, has made research and awareness a large part of her practice as she continued to see women with problems closely connected to lipedema, and she felt that there really needed to be more information and resources for medical professionals. She, along with vascular and plastic surgeons like Dr. Stutz, Dr. Ghods, Dr. Ameron, Dr. Jorjoni, Dr. Bird, Dr. Wright, Dr. Schwartz and many others, have taken the challenge of closing this huge gap in healthcare. But despite their efforts to share their research, their efforts to educate and advocate, there still remains this barrier to care surrounding this predominant women’s health issue.  Yet the same rhetoric remains, even after there has been so much research and successful treatment of this disease. Women lack access to care and are dismissed because of their body size the world over, including right here in Canada.

I’m just thankful that I didn’t have a gastric bypass or sleeve. I wouldn’t have been the first. Many women go through major surgery that not only creates severe trauma and stress on the body and for some making their lipedema worse, but such surgeries offer limited success, because lipedema fat is not recognized or metabolized like normal adipose tissue. Can I say that I likely would not have struggled with body image? Of course not, everyone does. But when the pain comes, along with the swelling, the increasing limitations around mobility, the injuries, the weight loss resistance, the disproportion, the brain fog and memory problems, the autoimmune issues, and the massive number of other complications with a health issue like lipedema, and worst of all, you have no expert medical advice here as most medical professionals I’ve met have learned though my research and expertise. I understand my body in a way I could have never if I had gone ahead with bypass surgery.