Coming June 10, 2017: Lippy Legs & All – My Life with Lipedema

Scheduled for June 10, 2017 release.
You can pre-order your copy from the publisher here:
https://www.smashwords.com/books/view/710509
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For years, I watched as my calves legs grew larger, bruised easily, and became more painful. Even bumping against a chair or the corner of a wall would send shockwaves of pain through my calves and leave me with huge bluish-purple bruises.

I knew something was wrong, but what could it be? I thought it was a simple case of edema or general swelling, but keeping my legs elevated and taking diuretic pills had no effect. In fact, they only became worse.

In 2014, after several attempts to locate a physician who would help me figure out what was wrong, I was lucky enough to get a diagnosis. I had Lipedema, a genetic disease I’d never heard of before. It’s a mystery disease with no known cure thus far.

Not widely discussed, Lipedema is rare and only affects about 11% of women. Few doctors are able to recognize the symptoms, nor have they been exposed to information about the condition and how it relates to the all-important lymphatic system.

LIPPY LEGS & ALL is the story of my life (thus far) with Lipedema. I’ll discuss, in detail, what I’ve learned about the disease, how it’s permanently changed me both physically and mentally, and why I’m determined to bring awareness to this condition so women who may suffer from Lipedema can get the essential diagnosis and treatment they deserve.

Without a proper diagnosis, treatment, and rehabilitation, a Lipedema sufferer can face a bleak future of wheelchair-bound immobility or, worse yet, amputation of their limbs. No woman deserves either of those things; if I can cast a wider spotlight on Lipedema through the publication of this book, I will.

Cover_NEW_Lippy Legs & All

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Oh, great! Achilles tendinitis

So, turns out I likely have Achilles tendinitis.

Over the past month or so, I’ve increased my walking to almost every day (and twice a day, most times) for four or five days a week. As a result of the sudden increase and duration in physical activity, my body—and in particular, my Achilles tendon—went, “Whut?! I’m not ready for this!” So now I have a very painful, stiff, and sore Achilles tendon on my left leg.

The last thing I need to happen is for it to rupture, so I gotta focus on making sure I don’t blow it out completely. I’m not going to stop walking, that’s for sure. It’s doing great things for my body. Who knew it would be a problem?! Didn’t count on this happening!
On the upside, I’ve lost weight (my son and his GF actually commented on my face being thinner when we Skyped the other day) and I was able to fit into another pair of jeans I hadn’t been able to wear for quite a while.

Guess you could say there’s a good side and a bad side to all of this. Then again, that’s life in a nutshell, isn’t it?

Needless to say, I’ll be doing stretches and exercises while I’m working at my desk so I can avoid a rupture. :-/

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.

Finally — my journey toward a hypothyroidism diagnosis

Well, well, well…it seems I may have found the right person to consult for hypothyroidism treatment. The general practitioner who didn’t seem to give a whit about it in fall of last year and dismissed my concerns WAS wrong and it turns out I SHOULD be on medication. I have EVERY single one of the symptoms of hypothyroidism. I *knew* there was something wrong all along. Pays to do research and ask questions. Just goes to show YOU know your body better than strangers do.
I’m anxious to get started on the journey to wellness. For all those well-meaning (?) people who gave me shit about never being able to lose enough weight in my life (to make THEM feel better about themselves, I suppose), you can SUCK it. Turns out there was a REASON why I could never reach *your* Holy Grail of perfection. My body was working against me!
I remember being 135 lbs when I was a teenager and being told I was still too fat, and then having a lecture about everything on my plate. It was humiliating.
There was also a time when a friend decided to bring up the subject one day at an eating establishment and started loudly discussing it, flat-out putting me on the spot. I was mortified and my husband was furious. We couldn’t believe someone could lack that much tact. Great that YOU weigh 115, but I don’t and haven’t for a long time. And guess what? There was a reason. I never forgot that moment, either.
Am I sensitive over this issue? Yes, I am. Because I get pissed when people ASSUME things about you, your body, and your life without knowing what they’re talking about.
The only people who get to say anything about my big boobs, big ass, or extra padding is ME or my husband — and my husband LIKES women who have more padding, thanks very much.
Anyway, just a rant here. My advice is to keep your mouth shut in such circumstances. A lot of women — and some men — have a hard time doing that, unfortunately.
Sorry this turned into a vent, but it’s been a long time coming. And yes, I feel better now that I’ve gotten it off my chest.
My worth comes from what’s INSIDE me, and not how attractive or unattractive YOU think I am. Take a good look at yourself in the mirror. You may be pretty or handsome on the outside, but you also have work to do on the inside just like the rest of us.
If you have issues with me or this post, you can privately message me with your concerns. Comments will be moderated and rude or snarky ones will be deleted without a reply.