To All My Lippy Sisters,
Today I feel compelled to write this story to help others understand the true nature of this lipedema disease and the devastating effects in can have on someone’s life. I know many of you can relate to all, if not most, of the aspects of this disease that diminish not only our physical capacities, but also our spiritual, emotional and social well-being. While there is no cure for this disfiguring and painful disease there are things we can do to halt and even reverse some of the damage done to our person by its progressive nature.
If you have lipedema, no matter the stage, please read to see how this disease can dramatically change your life. If you don’t have lipedema but know someone who does, please read so you can be a source of support and encouragement for them while they grapple daily with this beast of a disease.
To all who read, know this disease is very real and very serious, especially as it progresses. It is not obesity, it’s not just cellulite and it’s not just fluid retention! It is also not our fault this disease chose us! Do not dismiss or gaslight us. Do not body shame us or treat us less than human for not conforming to current social body standards. We have a hard enough time accepting ourselves with a disfigured body type. Educate yourselves, your medical support team and insurance companies about the devastating effects of this disease and not settle for anything less than the correct treatment plans required to mitigate and improve the quality of our life!
Most of all, love yourself and be a beacon of support to other lippy sisters out there who desperately need your courage, strength and knowledge to fight this painful disease!
KEEP FIGHTING – through to a diagnosis!
I have spent the better part of four decades slowly succumbing to a disease I didn’t even know I had – Lipedema. It slowly robbed me of the things I loved in my life: socializing, going to the movies, sitting on the beach, vacations with the family, bike rides, shopping, and even going for walks. In its place was agonizing pain throughout my body, horrific swelling in my backside, thighs, legs, belly and upper arms that caused terrible pressure pain that I thought my skin would burst at any time, lots of bruising, back and sciatica pain, lumps of all sizes throughout my body that created jolting pain whenever they were touched and digestive issues I could never quell.
It wasn’t until 2014 when I was literally in bed that I learned I had lipedema. It now makes sense that the lipedema is my primary diagnosis to my secondary or comorbid lymphedema. Thank you to a failed weight management class I took over eight weeks in 2014 and to Google for helping me unmask the real beast! Now at least I knew what I was dealing with even if I didn’t have a means to wrangle it just yet.
KEEP FIGHTING – through unexplained weight gain!
I, like many of you, struggled with unexplained weight gain starting around puberty, disfigurement and pain with no answers from the doctors. For many years I was told to reduce my calories, get more exercise and perhaps try some diet pills or aids to help with my ballooning weight. I tried them all and guess what – nothing worked! I sadly accepted the next size of pants until they became too tight and hurt my legs. What could I do, I had no choice. I cried each time I had to trade in my old pants for a higher size wondering if my body would ever stop growing. I eventually got to the point where pants hurt too much against my skin and would no longer fit the odd shape of my thighs and legs. I resorted to A-line or maxi skirts to avoid constriction and hide how large and ugly my lower body had become. I also could no longer wear sneakers or shoes and turned to Birkenstock Arizona shoes for support and daily use. My tops were limited to those with short, poufed or no sleeves that would fit over my very large upper arm area. I would then top that with a cardigan or oversized stretchy knit jacket so that I could look somewhat professional at work. Now I am resigned to wearing an ankle length lounger with no undergarments, as they hurt just to don and wear, to allow me more freedom to move around, especially as I no longer leave my home (except for doctor appointments).
KEEP FIGHTING – for your job!
I, like many of my lippy sisters, had to work outside the home to support my growing family. I enjoyed my work in the Information Technology field and therefore, did not mind having to go to work every day. As a well educated woman with a Master’s degree in Information Technology I rose to positions of management, which is still somewhat uncommon these days for a technical field. While I enjoyed learning and helping my companies progress with their business needs I was battling a more formidable foe in my own body. I found it more difficult to walk around our buildings, tackle the stairs or even stand for periods of time. Even with compression bandaging my body continued to grow to the point where my knees could no longer carry me without severe pain and dislocation. I started missing work due to the excruciating pain in my lower body and knees. Painkillers didn’t really help and I could find no relief except to keep both legs elevated during the day, which was impossible to do at work. My digestive issues were also mounting so much so that I was sick with diarrhea, cramps, bloating, gas and fatigue every day. It got to the point where God said I could literally die at my job neglecting my health OR I could try to find answers and possibly heal myself, but not both. I am stubborn and tried to hang on a couple more months before my whole world collapsed and I found myself in my bed on permanent disability back in 2014. I cried for a long time having lost 2/3 of our income and needing to support two school aged children, a mortgage, a car payment, bills, put food on the table and trying to retool my husband for his sudden launch back into the work world. I put my faith in God that he would see us through these hard times!
KEEP FIGHTING – for an effective treatment plan!
I was diagnosed in 2001 with severe bi-lateral lymphedema in my legs by one of my doctors and sent for treatment in the physical therapy department. I met a wonderful therapist, well trained by lymphedema specialists, who said I was the second worst patient she had seen. Boy did I feel special! We spent weeks learning how to use a pneumatic pump and wrapping my legs with foam and compression bandaging. I had to wear them every day if I was going to “manage” the swelling in my legs, which I did for a dozen years by myself before my body gave out. Pumping became and occasional thing as it took too much time to perform when I had to work 9-12 hours a day. I did take an hour each morning to wrap both my lower legs before going to work and another hour at night removing and rolling them up for the next day. However, the wrapping was not enough. My legs continued to balloon in size and walking became a challenge. My left ankle cuff/saddlebag/shelf became so large that it scraped the ground causing it to break open, bleed and weep making it difficult to treat and wrap. Hyperpigmentation (skin discoloring of red and purple) set in due to the large ankle size and constriction of blood flow in the area. A large lobule also grew off the back and side of my left leg just above the knee, which was over 23 inches in girth. The volume and weight of this lobule restricted my ability to walk, exerting tremendous pressure on the knee and great pain when left to hang freely. It sprouted smaller growths, about the size of nickels, that became highly susceptible to tears, bleeding and weeping whenever I scraped my leg over a surface. Lots of bruising and painful lipomas (fat clusters) littered all parts of my lower body, my abdomen, my ribs, my shoulders and my arms making it difficult to be touched or bump into anything.
KEEP FIGHTING – through the infections!
Cellulitis is a common enemy to those with lipedema. I have had two good rounds of cellulitis, one seriously taking me down back in 2008. They were caused by untreated strep throat that released toxins into my system. I had to have a pic line installed in my arm and gave myself IV injections of strong antibiotics a couple times a day to try and kill these powerful toxins. I chose to be at home around family than in a hospital for weeks while fighting to recover. Luckily my medical network had home health care providers that came out to check on my progress, change my dressings and deliver the necessary medications. Those toxins traveled throughout my system and settled in my lymph impaired legs before erupting into a large formidable wound on the back of my right leg. These wounds can be large in size and very painful. The bacteria essentially eats your skin from the inside out. The wound ended up being 6-7 inches in diameter and took six painful months to scab over. The wound clinic kept a close eye on whether a portion of the back of leg would need to be removed as it was not responding to treatment for a while until we miraculously found the right medicine! Cellulitis is nothing to play with and requires immediate treatment when detected. Otherwise, there could be dire consequences I won’t elaborate on here.
KEEP FIGHTING – through the pain of limitations!
I sit and quietly cry each time someone else has to take my girls to one of their school events because I can no longer drive them myself nor attend these events. I quietly cry as my family goes out for a day at the amusement park, or bike riding, watches a first run movie at the theater or out to a restaurant for a meal as I can no longer do these things because of this dreadful disease. I don’t want to deny my family any happiness or adventures a child should have a chance experience because I can no longer walk, ride or sit with them. It’s not fair to them! It pains me terribly when I have to call my mother or friend to arrange rides for the girls or when I am forced to tell them no since I cannot help them myself. I cried when I had to ask my mother to help my oldest daughter with her driving lessons. I wanted so much to be the one to show her the ropes and watch her confidence grow as she mastered driving the van. I cry because I can no longer keep my home clean and organized as I can no longer lift, carry or sustain any prolonged activities due to my size and pain. This level of frustration only alienates me further from having anyone visit me. I can no longer ride in my van as getting in and out is very painful and I barely fit in any seat never mind the pain of walking to and from the house. I cry because I can no longer attend church, go shopping at any store, especially grocery shopping, visit family and friends in their homes, fly to see my sisters and their children, attend weddings, births and funerals and other events important in my life. Being 350 pounds overweight and essentially non-mobile there are hardly any places that can accommodate you so venturing outside your home can be extremely challenging. Essentially this disease has me trapped in my home, unable to socialize, unable to perform the most basic of errands or tasks and forced me to rely on a network of family and friends for my ongoing health needs. Joy and happiness is very limited, replaced by pain, suffering and overwhelming isolation. I can easily see how people with this disease can ask God to relieve them of their suffering. And yet, I wake up every day determined to keep fighting to do what little I can for at least myself if not also my family, even if it’s from my bed.
KEEP FIGHTING – for your mobility!
I know there are many lippy ladies out there who are like me, where your mobility is gone or nearly gone, leaving you bedridden or homebound. I have managed to hobble around on two bariatric canes for several years and even have to resort to walker sometimes to just move about in my home. Whenever I have to go out, such as to a doctor’s appointment, I have to use a bariatric manual wheelchair with my husband pushing me and it can be a struggle. Each day I teeter on the edge of immobility and I refuse to fall over that edge!
I have spent so many years crying and angry for not being able to control this soul-sucking beast and slowly losing my mobility and life to it! Although many at my level understandably succumb to their beds, I am refusing to give up and give in, and picture myself walking more again, even if it takes a couple of years to get back to that point. I do fight to walk to my living room and kitchen whenever I can now to this end. The lipedema coupled with severe lymphedema and severe osteoarthritis in both knees present a huge challenge, but I accept this challenge and am determined to prevail by regaining my mobility!
KEEP FIGHTING – for your self-worth and dignity!
How many times have you been ridiculed, belittled, gaslighted, pushed over, gawked at or stared down in public, your clinician’s office or even by your family or friends? It’s demoralizing, deflating, uncomfortable and downright painful to encounter people who body shame you and tell you it’s your fault for being so fat. Wait. What? These people don’t know my story or situation and the daily struggles I endure to try and live my life with this disease. Is their life so boring and uneventful that they need me to entertain them or make them feel better about themselves? Does empathy and compassion still exist?
Ladies, we already know how debilitating this disease is and we need to get out there and live the best quality of life possible! Unfortunately, we still need to address the people who will attempt to challenge both our self worth and dignity. Don’t yield to them. Find a means to gently counter these attitudes, such as trying to explain the disease and its challenges to them or hold their stare until they yield to you. Don’t let clinician’s gaslight you into accepting any kind of blame for your condition. Remember, lipedema is not your fault! It is a bonafide disease that deserves a proper diagnosis and treatment plan. Fight back and stand your ground ladies!
KEEP FIGHTING – against the lipedema freeloaders!
My dear lippy ladies, rest assured lipedema doesn’t like to come to the party alone. It usually brings cohorts, or comorbidities, to spice things up a bit. In my case 2014 was a key year for me. I ended up on disability and learned lipedema was the name of my archenemy. I also just turned 51 and menopause kicked in, which is just another steaming heap of trouble for our bodies. Menopause is troublesome to most women but even more so for lipedema women. It is a hormonal catalyst that can really get the party started and sink you to depths you never knew you had! During this same time I was also diagnosed as having Celiac Disease and Mast Cell Activation Disease (MCAD). These are two huge comorbidities that exponentially raise the inflammation levels in your body causing your lipedema pain to amplify! Within the last year and half I battled several bouts of kidney stones and boy were they painful! I am also hypermobile, which explains why my knees and shoulders dislocate frequently as well as why I can also reach the floor without bending my knees. Thank you weak and faulty collagen! I sometimes find myself short of breath and can catch almost any bug floating around that my family brings home thanks to a common variable immune deficiency (CVID) disorder. My immune system is seriously impaired! And after a fall earlier this year (2018) a scan revealed I have a tumor on my thyroid, indicating possible thyroid or parathyroid problems. I’ll know more after further tests. So, as you can see my body is a steaming mess that needs unraveling and serious attention. How is your body holding up?
KEEP FIGHTING – commit to reclaiming your life!
Now that this beast has revealed itself along with its cohorts, is it flight or fight time? After decades of struggling to remain afloat, and barely at that, it would be easy to just let these diseases suck the rest of life out of me. However, I have things I want to do and see and experience yet in this life. I want to see my girls graduate college, marry, play with grandchildren (but not too early!), take walks, ride bikes, watch sunsets on the beach, take road trips to anywhere, go to church, socialize and much much more. Committing to a fight will take more than I have so I will need help. I will need support and encouragement from family, friends, lippy sisters, and from God. I firmly believe “For nothing will be impossible with God.” (Luke 1:37). I have already committed myself to the fight and laid my troubles at God’s feet. Creating a positive attitude and outlook is the first step down this new path. Are you willing to walk that path with me and reclaim your life? Is lipedema just the tip of your iceberg of medical problems, too?
KEEP FIGHTING! If you want to fight this horrible disease just like me, you will need to do your part. Here’s how we can successfully move down this new path:
- Do your own research and get the facts about your disease(s). I have compiled much of what I know and have experienced with both lipedema and lymphedema on this site. There are some other great resources out there to help you, too. Check out my resources page or just Google what you want to know.
- Understand that some of your diseases or conditions, besides the lipedema, are related with some underlying body problems, such as defective collagen or mast cell activation disorders. You can read more about these in the comorbidities section. Working on managing your lipedema can also help some of the other conditions too. I have personally found this to be true in my case.
- Develop a comprehensive treatment plan with your medical team. This may include lymphatic pumps, compression bandaging or garments, manual lymph drainage activities, promoting good skin care and getting exercise. I have to use a pneumatic pump to help move fluid out of my legs. I just got a new 8-chamber pump and two new sleeves. It has made an incredible difference in massaging the fluid out of my legs and breaking up fibrotic masses. I also found a wonderful physical therapist, who is an out of the box thinker, that was able to take 60 inches total off my lower legs by using a strategic compression bandage wrapping technique. I love her work and enthusiasm in treating lipo-lymphedema folks!
- Be willing to make lifestyle changes that help heal your body, mind and soul. Again do your research and be open to proven out-of-the-box ideas. These include changing what you eat, how you calm and focus your mind and whether you choose to reach out to a higher power, God in my case. I just have to say here that reducing sugars and eliminating processed foods will go a LONG WAY in reducing your inflammation and pain levels! Whether you choose keto, paleo or some other eating plan that reduces carbohydrates, particularly sugars, eating real whole food is the key to reclaiming good gut and body health.
- Keep moving and breathing! Whatever little you can do to keep moving, even if it is bed exercises, keep doing it. Strive to incorporate more as you can, focusing on keeping and building muscle tone to help support you and move you around. Don’t forget diaphragmatic breathing too!
- Develop a good solid support system! This may include family, friends, church folks, lippy sisters, clinicians, therapists and others who will give you solid advice, support and encouragement. You will need help from others on this journey. You will need people who will hold you accountable to your changes and encourage you when you backslide or complications set in. Don’t be afraid to ask for help and graciously accept whatever help is offered!
- Set short and long term goals for your journey. Short term goals might be to lose a couple pounds or inches off a certain body area, to walk a little farther than you normally can right now or to even walk with the help of canes or a walker, to attend one event or outing with friends and family even if in a wheelchair or to wear a certain type of shoe again. Long term goals can be set but are not your immediate focus. They may include wearing a pair of pants again, shopping in a regular department store for clothes, shopping at the mall, walking or hiking with the family, doing yard work, visiting family and friends, travelling a distance by car or plane again, losing a certain amount of weight or inches off your body or even going to work outside the home. Goals keep us focused on our task at hand and keeps us on track to achieve greatness in the end!
KEEP FIGHTING – for your life! Let me say it again – KEEP FIGHTING – for your life! I can’t and won’t give up fighting this disfiguring disease. I am determined to prevail no matter how much I have to change to achieve my outcome. I acknowledge the fight will be difficult and I may even backslide a couple times. I am human – it happens. However, I promise to get back up, dust myself off and continue where I left off until I reach my end goal. I have A LOT of weight and inches to lose along with pain and inflammation. However, what is waiting for me at the goal line is well worth the months and years I will need to put in to achieve it!
Are you ready to start your fight?
I pray for your improved health and my own!
I will post updates on my progress over time so that others will see real change can happen when you are willing to take a stand and fight for your health and life.