Life Changes: A Double Diagnosis of Lipedema & Lymphedema

About a month ago, I learned that I may have lymphedema, which means your lymphatic system is compromised or blocked in some way. Earlier this week, after visiting a local outpatient rehab lymphedema clinic, I learned that I have both lipedema *and* lymphedema.

Both manifested later in life; I'll be 50 in December and so I didn't notice any problems/symptoms until I was middle-aged. Up till then, nothing seemed amiss and everything looked and felt normal. In effect, I received unexpected news and it was a double whammy; not just one issue with my lymphatic and vascular system, but two. Neither can be cured, only managed.

I am just now learning about these diseases and they will be a part of my daily routine for the rest of my life. Since most people haven't heard of them and don't understand them, I wanted to share the experience with friends, family, and whoever else may find themselves in the situation I am now.

A friend of mine wanted to know more so she could understand, so I wrote the below-posted information to help explain it as best I could. Then I realized I might as well post this info on my blog to let people know about this new development in my life and to also inform those who may want to know or may need to know more about lipedema and lymphedema.

As I told my friend Mari on Facebook, "Lipedema is rare and it's not caused by what you eat or how much you weigh. Overeating or improper nutrition do not cause it; therefore, losing weight or restricting calories will not affect the diseased tissue/fluid. In fact, I can attest to this, since I've lost well over 50 lbs over the past few years. It does not matter at all. Anorexics can get lipedema, in fact. So when you say 'care for your body,' that care means keeping the skin moisturized and protected so bacteria can't get in dry or cracked skin or feet. Otherwise you can get cellulitis, and that can be deadly. About 27,000 people a year die from that.
Second, the lymphatic system only moves one way—up. That means blockages or a compromised system can't move the lymphatic fluid properly, and that's a big problem! So, care also includes getting the fluid moving through special massage techniques, as well as compression to keep the lymph from settling in the lower limbs where infection can develop.

Manual lymph drainage is necessary (for a person like me who has lipedema and lymphedema as well.) The vascular system and lymphatics are compromised or damaged. Penrose rehab wants me to come in for manual drainage twice a week, but they aren't sure if our health insurance will cover it. They recommend twice a week for that, and compression garments and bandaging daily, from the time I get up to the time I go to bed (at least 12 hours a day). If insurance doesn't cover the therapy, then it's likely I'll have to try and learn how to do it myself (and I'd prefer an expert with years of training do it instead, if possible.)

Neither conditions can be cured or treated with diuretics or medicine. It will only become more severe. There's no way to completely stop it. So, no, I will not be completely healthy in this regard, regardless of what I do. I can only hope to delay it from advancing to a more severe stage. It already affects my mobility right now, so I just do the best I can and go from there.

Bruising is common, and these conditions can worsen with activity and warm weather. Vigorous exercise—especially without compression stockings—will exacerbate the problem and make things worse. So, as you can see, these are tricky conditions that become progressively worse. The best hope is to try and manage them as best as possible. I know this is a lot of info, but there's a lack of knowledge about these conditions, and it's important (at least for me and others suffering from these conditions) that people are educated and don't make assumptions or think it's simply, "Well, lose weight and exercise more." Nope! If it were only that simple! I can get down to a size 1 and I'd still have it. That's why one physician I read called it a "rare and devastating disease," with the psycho-social aspects particularly hard for patients. I was recently diagnosed, but I'm already having issues with it. Having understanding and supportive friends—such as yourself—makes a huge difference for patients dealing with lipedema/lymphedema.

As I said, doctors and researchers don't know what causes it, but they believe it's genetic (hereditary) and also hormonal. It cannot be cured, and it's the same for lymphedema. Both affect your mobility and can result, in severe cases, in being wheelchair-bound or, in the extreme case, amputation of the legs. Because I've been pro-active in getting a diagnosis and treatment, I don't expect the latter two to happen. The person affected must follow meticulous treatment. It's not something that can be ignored, because you cannot reverse it; it can only get worse. About 11% of women have lipedema, and rarely do men get it (only 2, I believe, from the articles I read from Dr Karen Herbst, who is a doctor in Arizona and an expert in this field). It's classified as a rare disease, as I mentioned before. For men, almost unheard of!

Paul, sorry I hijacked the thread, but I needed to write this up for my page and my blogs anyway. Might as well explain quite a bit of it now! Thanks for asking, Mari. I went way beyond what you asked, but now you know the gist of it all."

[Guest Post] Hiding in Plain Sight: A True Story of Weight Loss

This week I'm pleased to share a guest post from my dear friend, C. Yvonne D. It is an inspirational post about self-acceptance and determination. I hope you find it as uplifting as I did.

Thank you for sharing your words, C. Yvonne D.!
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I've been fairly silent about my journey. It has been a long, arduous journey, and I've finally decided that it's time to break my silence. I spent twenty years of my life living as a plus-size woman. I look back at photos taken over those twenty years, and I see the misery and pain. Yet, what I've realized from losing this weight is that there was also an armor, or shield, that came from that plus-size number. It's finally time to tell my story.

At my heaviest weight, I tipped the scales at just over 325. In fact, my doctor at the time joked about calling the Broncos to add me to their roster if gained any more weight. I bounced from diet to diet, trying to lose weight, while secretly sabotaging myself.

When I went to see my kidney specialist (nephrologist) in February of 2012, I had been seeing a therapist for over a year. I knew I was sinking. I knew I needed help. As I sat there that morning, I received some hard news. My nephrologist looked at me and said, point blank, "If you don't lose weight, you're going to die. You are killing yourself, and only you can fix it." He then wrote out a referral for a dietitian, and a surgery consult. I was suddenly confronting a fear bigger than the one that had kept me heavy.

I spent hours in fear and agony while making the choice to follow through with the dietitian. I felt I was now working on paying someone to humiliate and laugh at me. The tapes of being bullied throughout my formative schooling years had led me to a lifetime of self-ridicule. I learned how to beat myself up better than they ever had . Even today, some of those words haunt me.

I finally went in, and I'm so grateful I did. My dietitian didn't teach me anything I didn't already know, but she did become a vital player in my weight loss; she became my first cheerleader. I also followed through with my surgery pre-op appointment. The nurse in the gastro office informed me that I qualified for the surgery, but would have to prove over a six-month period that I could follow a diet plan and become healthier. I asked if it was possible to lose enough weight to no longer qualify for the surgery. She told me that at my current Body Mass Index (BMI) of 33, it would not be possible to get under the 28 BMI requirement in six months. I thanked her, because in that moment she became another vital player: she had given me a goal.

Somewhere around my fourth month of weight loss, I was no longer dieting. My health was at risk and I didn't want my children motherless. I had gained a voice, a piece of self-worth, a morsel of self-satisfaction. I can't give specifics of what changed; I can't tell you that I started pumping iron, or working out crazily; none of those things happened. I did work out for thirty minutes, almost every morning, on the Wii Fit. I ate proper portions and began walking more. It wasn't that I was suddenly trying. It was that the weight loss had finally found its hold on my heart. I discovered the missing connection.

I overcame my first challenge at the six-month mark. When the nurse called back for my next surgery appointment, I proudly told her I had successfully lost seventy pounds—enough weight to no longer qualify for the surgery. The extra pounds magically vanished and I no longer engaged in stress eating. That was until a gentleman at the store noticed me. He smiled and said hi, and while I know he was simply being friendly, I reeled into a familiar, dark place. I lost my shield and I was no longer invisible. Thankfully I remained in therapy, because the next weeks would prove challenging.

What nobody tells you about weight loss—the taboo part of the whole challenge—is that no one talks about what put you at that weight. It took weeks for me to realize my weight had become a shield. Part of it was a false sense of security. You see, I had been raped when I was thinner. My weight gain had become a double shield. I felt invisible when I was heavier, and in being invisible, you feel safer. If they can't see you, they can't hurt you. There was also a part of me that believed if someone tried to hurt me, I could stop them because I was bigger, heavier. If nothing else, I could sit on them. My weight made me miserable, but it also protected me.

I still have those moments of fear and anxiety. It's not that I never stress eat anymore; instead, I have learned to limit what and how much I eat. I haven't had to fight to stay thinner; it happens because much of my life has truly changed. A year ago, I started T’ai Chi. It has been a tremendous help. Also, I took up bike riding a month ago—something I never thought I’d do again.

Recently, I overcame one of my final challenges. I became overweight. You might wonder, "What? How is that good?" When you start at morbidly obese and move to simply being overweight, it becomes a celebration. I still have weight to lose, but I'm no longer actively trying to lose weight. Instead, I'm learning to be happy and healthy.

The best news is that I went from stage four kidney failure down to stage two. My nephrologist was right—only I could change my life and my future. You can, too. You can become bigger than the bullies and the rapists on the inside. You can also overcome the outside.

What people sometimes forget is that you don't have to do it alone. There are people out there who can, and will, help. All you need to do is ask. Everyone's struggle is different, yet at the core we are all the same. You can face the hard work and challenges, because you've faced worse and you're still here, still kicking. Find your voice, your passion, your zest for life, and overcome the pain of your past. You are the only one who can do it, and you can.

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AUTHOR BIO
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A mother of three and a grandma to three, C. Yvonne D. was born with a kidney disease called IgA Nephropathy. Her condition was exacerbated by a medication cocktail given to her in her thirties that was supposed to help her cope with the painful onset of fibromyalgia and rheumatoid arthritis. In her words, "I have spent 42 years afraid of almost everything. I've been defined by my titles, pain, diseases, and mental health. I am in an ever-evolving journey to push through these definitions, for they are such a small part of who I am. I am learning to be me and I'm ready to share a piece of my story."

Yarn Meditations/Vlog for 8.8.14

Recurrent Dream: Lost Again

Again, I had the same dream but in a different setting. I've lost count how many times I've had this dream over the past six months.

I am at a place -- sometimes a campus, an amusement park, a high school, a sprawling housing complex, a fairground with rides, a city or town. I end up getting lost and wandering around for hours.

Although I ask for help, either I get vague or wrong directions, or no response at all. I try all different routes to get to where I need to go, but I end up somewhere else, and even more confused.

It's a frustrating, depressing dream that never seems to end. In the dream, everyone else is oblivious or they are nonchalant.

I'm well aware how this dream mirrors the challenges that have come up over the past few years. I get the symbolism and the layers of meaning. One day soon I'll find my way and I won't be lost in my dreams anymore--or in real life.

It's up to me to figure it out, as it has been most of my life. Except I'm weary and tired. I need a break, but as they say, people in hell want ice water, too. I'm not sure why I haven't given up, like many people would have.

My psychiatrist was amazed I am not a substance abuser or alcoholic, based on my life history. It goes against my nature, I guess. If I give up, I surrender and I'm beaten. I'm not that type of person, though.

Once I get knocked against the ropes, it takes time for me to recover, but once I do I'll come out swinging again. I'm tenacious, if nothing else. Stupidly so, perhaps. This recurring dream reflects that.

Being human is about being real. I'm being real with you, even if it's uncomfortable.

Win one of five free copies of my soon-to-be-released eBook, "Aim To Write: Tips & Tricks for Freeing the Scribe Within." Details below!

Alrighty then! Before I head to bed tonight to engage in more flu recovery, click on the link below to visit my author page. Click on the Giveaway tab located at the top of the page. After midnight tonight, Colorado time, you can enter to win one of five free copies of "Aim To Write: Tips & Tricks for Freeing the Scribe Within." The giveaway lasts eight days, so you have plenty of time to enter. 

Best of luck! Over & out (for now)

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Gaining Clarity and Trusting Yourself

Final thought for tonight: if someone else can do something, you can too if you have the will, the drive, the passion, the motivation, the dedication, and the foundational information needed to achieve it. If any of those things are lacking, it will be difficult to model the results you seek.

I know what I'm passionate about. I know what I can accomplish when I set my mind to it. If I want it, I will do it. If I don't want it or lack the interest or dedication, I won't do it.

What is it that YOU want? Not your family. Not your friends. Not your spouse. Not your kids. What do YOU want?

What makes your soul sing? When you engage in that activity, do you slip away, losing track of time because it's a pleasant experience and you're in 'the zone'? That's a hint right there. Whatever makes you feel that way, pay attention to it. Pursue it.

Don't ask other people's permission. Don't ask them what THEY think you should do. It's not about them. It's about YOU. Nobody knows you better than yourself.

Unless you're clear on what YOU want (not what people THINK you should want or be), you won't accomplish anything near what you wish for. Getting clear is utmost in importance.

I've lost some clarify over the years, or sacrificed it for other things and people that were merely distractions from the genuine passion that lives within my core being. But now, RIGHT NOW, I am crystal clear on what I want, and I aim to get it, one way or another.

4covert2overt ~ A Place In The Spotlight: SUN SIGNS FOR WRITERS by Bev Walton-Porter

Yay! My book, Sun Signs for Writers is in the spotlight today on the 4covert2overt blog. So honored. Thank you for featuring my book, M.C.V. Egan ;-)

4covert2overt ~ A Place In The Spotlight: SUN SIGNS FOR WRITERS by Bev Walton-Porter: www.amazon.com e-book Or Print     On AMAZON   Learn Why You Write and How to Write Better What if there were a rel...