[Health Alert] Educating the Masses

This is for all of you who’ve said or been told, “Oh, you’re just overweight. Eat less, exercise…it’s just too much fat and you can get rid of it easily.” Obesity or being overweight is one thing, but lipedema is a genetic disorder and NO amount of dieting, exercise, or diuretics will cure it. Women who are anorexic get it. Women of all sizes get it. It’s genetic, and if a female ancestor of yours had it, you have a greater chance of getting it, too.

There are no medications you can take for lipedema, which may also be one reason why the U.S. medical community isn’t interested in doing much about it. They can’t make a ton of money on this through drugs, for one reason.

Even if you have the tumescent liposuction in Europe, this disorder can take over again. And, worse yet, it can take over your ENTIRE body…you could literally starve yourself and it would STILL take over. Lipomas will form, the lymphatic system is compromised, you will bruise easily because the vascular system is also compromised, and if you are lucky, you might be able to hold at stages 1 or 2 (I am currently at stage 2).

Usually it’s not caught early because women are just advised to ‘diet and exercise.’ Well, if you’re traditionally overweight, that’s fine. But this is NOT the same thing. This is a GENETIC DISORDER, WITH UNKNOWN CAUSES (BUT THOUGHT TO BE HORMONAL IN NATURE).

So, before you judge women, you should know what you’re talking about. Only a few men have gotten this disorder, but roughly 11% of the population of U.S. women have lipedema. Most go undiagnosed, because they’re told, “Oh, you’re just overweight!” No…this is NOT the same thing, folks. That’s like telling a diabetic to just regulate their sugar by using mind control.

Please watch enlightening video. Update what you THINK you know about some people — me included. Because while there are many horses out there (people who are simply overweight), there’s a group of zebras, like me, who have a genetic disorder that causes pain, swelling, bruising, mobility issues, and other uncomfortable things.

Increasing lipedema and lymphedema awareness is important so that, someday, women who may have it can get diagnosed before they’re well onto their way to the latter stages of the disease.”

Facebooking My Life Away

timepieceI’m Facebooking my life away—literally.

The other night I read an article about how much time people spend on Facebook. Most of the time, people may underestimate how much time they stay on the popular social media site. A link in the article led me to an app that would calculate how much time I’d spent on Facebook. I knew I’d languished in the pages and profiles of FB for hours. I also knew I was on Facebook most every single day. Still, I decided to check out the app and get an idea of just how much lollygagging I’d spent on Zuckerberg’s addictive social media haven.

To put it bluntly, I was stunned. Taken aback. Actually, appalled might be a better word. Or perhaps horrified. Any way you cut it, I knew the calculation would be high, but until I saw the final total, I didn’t realize just how high it was. Ready? *deep sigh* According to the app, since November 2012, when I launched my new personal profile, I’ve spent 173 days on Facebook. Yes, you read that correctly—DAYS. In more eye-opening terms, over the past two years, I’ve spent a full six months of my life on FB, posting statuses, replying to comments, returning messages, writing messages, sharing photos, and on and on. SIX months of my life, and for what? I’m still stunned over the results. I knew Facebook was a regular, almost daily, part of my life. I knew I spent way too much time over the site. But until I saw the actual figure, it didn’t sink in just how much time I’d wasted over the past two years.

What could I have done with that extra six months? Almost anything, but specifically, I could’ve been writing my next book (or two). I could’ve read more books (I read about 50 to 80 a year, but imagine how many others I could’ve consumed!). The beginning of 2014, I took up crocheting once again after a 24-year absence; I could’ve learned quite a few new stitches or learned to crochet several new items. I could’ve taken more online college-level courses. Let’s face it: I couldn’t done a heckuva lot more interesting stuff than stare at Facebook for hours, refreshing my feed over and over again.

Now, I’m not saying you should be busy all the time, producing nothing but work. That’s silly. I’m not saying social media is terrible, because it’s not. But what I am saying is that six months of one’s life spent on Facebook over a span of two years is a ridiculous amount of time pissed down the toilet. Time most often spent arguing or debating about politics or religion. Time that could’ve been more emotionally, mentally, and creatively rewarding (with more to show for it!) Six months of my life is too much of a chunk of that two years. Way too much.

By comparison, I spend much less time on Twitter. It helps that Twitter restricts your updates to 140 characters—unless you cheat and use Twitlonger, which I’ve done on occasion. With Twitter, I’ve found it helpful and informative when it comes to developing and/or breaking information on a global scale relating to science, global events, literature, tech, and countless other subjects. You will uncover information much earlier than you will at the major new outlets, such an CNN. I’ve seen it happen numerous times.

The best part is that Twitter takes up less time in my day. A single visit (or perhaps two) in a day usually suffices. Sometimes I won’t check Twitter for days, though. But when I do, it’s a quick visit that is a lot shorter than lingering for hours on Facebook. What’s more, my blood pressure doesn’t shoot up to dangerous levels over political and/or religious posts. Most of my feed is populated by people in the publishing industry, which is nothing but advantageous if you’re a professional writer, blogger, and copy editor like I am.

So, having discovered the horrible truth of just how much I’ve lingered on Facebook over the past two years, I decided it was high time for a break. I won’t deactivate my account, but it’s clear I need to use it less often. MUCH LESS!

For now, I’ll be hanging over here on my blog or on Twitter at @Mother_of_Crows if you want to connect. Or follow me. I’d like that. And hey, I’ll follow back if I can. I’m at the limit right now, but I usually clean out my list every couple of months, if not sooner. Following the self-aware Roomba is interesting, but I’m sure you’re much more so…right?

In the meantime, I’ll devote more time and energy to my writing and fewer days to feeding my (obvious) FB addiction. I doubt most people will notice anyway, and that’s another win for me.

Breathe, Breathe, and Breathe Again!

breathe

My longtime friend, Cyndy Clemens, who is a trained breathworker, had some excellent advice today about the need for people to practice proper deep breathing when they first wake up for the day.

I am required to do breathing exercises for my recently diagnosed lipedema and lymphedema. Deep, proper breathing, particularly to activate the L-2 area of the spine, where a large cluster of lymph nodes is located, is important for all of us.

Each week when I go in for Manual Lymph Drainage (MLD), my physical therapist has me do specific breathing exercises while she works on different areas of my body.

Once I finish with this round of therapy in a number of weeks or months, she will teach me what I will need to do from home as far as MLD for the rest of my life. That will, of course, include instructions for daily breathing exercises.

So, proper breathing is only helpful for these diseases (which are not curable, only manageable), but I feel terrific when I do them as well. Breathing not only helps the lungs and other parts of the body, it’s essential for proper function of the lymphatic system, which is a system I didn’t know much about before August, when I was diagnosed. The majority of people have NO clue and they should learn how it’s incredibly important to their lymphatic system, which supports the circulatory system and is essential for good health!

Make a note to learn how to breathe properly, then practice it daily!

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.”

Therapy update

Meant to post this before now, but lotsa stuff going on. Visit with my physical therapist for Manual Lymph Drainage (MLD) went well. Overall, my lower limbs are down in size and she’s pleased with how compliant I am with following her recommendations. She hasn’t measured me yet for my permanent compression stockings, though. I thought it would be this week, but she wants to wait another week or two.

I want to recognize my beloved husband for going with me, faithfully, to every appointment and being there in the room when everything takes place. I couldn’t ask for a more supportive husband! I’m still bummed that what I have is not curable, but my therapist and my husband keep me positive. He reminds me that I’m beautiful and that my condition hasn’t diminished his love for me one bit.

So, I have two visits per week, on average, and my therapist has 24 years of experience treating patients with lipedema & lymphedema. I’m in good hands — literally! A couple of things I have to watch out for the rest of my life: one, I can’t do hot tubs anymore (not that I did them a lot, but still); two, I have to be careful when I travel by plane due to the effect it can have on my calves, ankles, and feet. It’s also recommended that I use electric shaver instead of razors to shave, since cuts, punctures, scratches all spell bad news in a limb with lipedema/lyphedema. In the scheme of things, it’s a day-by-day situation.

A friend of mine asked if there isn’t a medication I can take to help. The answer is no. There is no medication that can help, and diuretics, diet, or exercise cannot cure my conditions. The cause is unknown, and lipedema is classified as a rare disease.

Anyway, just an update because Thursday’s visit was a good one. I think she said my lower legs were down an inch in some areas, which is fabulous. Too bad they won’t stay there permanently, but as long as they’re not going up and heading to the next stage, I consider it a victory. I do NOT want to end up in Stages 3 or 4.

Presenting Chicago writer and editor Jonathan Porter

Man, there are times when I’m overwhelmed with pride because of my kids. This is one of them!

My son, Jonathan, finally has his own site. He is a writer and editor (just like his dear old mom!). But, unlike me, he’s worked for cool-ass places like Madison Square Garden and Lions Gate Entertainment.

If you have a moment, please stop by. He is still working on the site, but there’s content up there already and it’s filling out nicely. Plus, I’m proud and I wanna share it with you guys!

http://jonathanporter.squarespace.com