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
============================

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

Advertisements

Welsh dreams…

Paul is watching “Penny Dreadful.” Timothy Dalton is in the series and I melt every damned time I see him in anything, pretty much. *sigh* Plus, he’s Welsh.

In the copy of the genealogical papers I have from the family historian on my birth mother’s side, my 9th generation ancestors, William Hughes and (Mary) Molly Daten, married in Surrey, England. Molly Daten was born in Wales and lived to be 87. They had six children: Mary Hughes (1748-1810), Susannah Hughes (1767-1834), Rebecca Hughes (1769-Unknown), Elizabeth Hughes (1774-1870), Moses Hughes (1774-1841), and Milburn Hughes (1776-1867).

I have Scottish ancestors as well (Clan Fergusson and Clan MacNeil of Barra), but I haven’t spent as much time investigating my Welsh, Irish, and Northern European ancestry.

After having my DNA test done, there are so many parts that make up the whole. I love this stuff!

Perhaps when I go back to the UK, I can visit Wales and see my friends Gareth Tamplin and Robin James Ganderton.

Untangling My DNA: Some Surprises Ahead?

My full ancestral composition info isn’t loaded yet, but apparently large parts of my DNA match that of other people from these countries. I figured the UK and Ireland would figure somewhere, but NOT Switzerland, Norway, and Russia! Wow! I loaded a screenshot of the info 23andme recently added to my personal DNA profile. Now I’m even more eager to get the ancestral composition results!

Untangling my DNA: Elevated Risk Factors for Diseases

Image

Right! So back to the DNA results from 23andme.com (for those of you who asked what the company name was). There’s a lot to go through in the health section. They check for your risk related to over 240+ health conditions and assess if you have a typical, decreased, or elevated risk factor for each one.

Well, I have those results. The good news is that I do NOT have the breast cancer mutations that are so nasty (you know, the ones Angelina Jolie had that caused her to remove her breasts). So that’s good. BUT, there were quite a few health conditions that were elevated that made me uncomfortable–one was Alzheimers, another was Schizophrenia, and another was Lupus!

Here are the rest of the ones I had genetic markers for. None of them are pretty. Doesn’t mean I’ll get ANY of them; however, I have genetic markers that predispose me to those diseases. Scary! Of course, environmental and lifestyle factors play a role. Still…these things are good to know, I figure.

Mind you, for the majority of my life I’ve not had to go to doctors often compared to most people. I’ve struggled with bronchitis/asthma my whole life, and as for surgeries, I’ve had my tonsils taken out, gall bladder removed, a D & C, and two C-sections. Oh, and a skull fracture (when I was a little kid).

Here are the health conditions I have elevated risk factors for. I’ve added a + sign to the ones I already suffer from: Alzheimer’s Disease, Chronic Kidney Disease* (*this actually runs strong on my birth mother’s side of the family, according to the genealogical records I have on hand), Celiac Disease (I used to be allergic to wheat/wheat products when I was a kid and had to take allergy shots. Maybe I should go gluten free), Ulcerative Colitis, Lupus (Systemic Lupus Erythematosus), Scleroderma (Limited Cutaneous Type), Abdominal Aortic Aneurysm, Alcohol Dependence (honestly, alcohol is okay, but I go long periods of time without drinking anything. If I never drank alcohol again, it wouldn’t matter. I’m not hooked on it. Chocolate, however, is another matter!), Asthma+ (already have this and bronchitis–my whole LIFE!), Chronic Lymphocytic Leukemia, Dupuytren’s Disease, Gout, Hay Fever+ (Allergic Rhinitis), Hodgkin Lymphoma, High Blood Pressure (Hypertension), Keloid, Kidney Stones, Obesity  (I’ve struggled with my weight my entire life!), Ovarian Cancer, Primary Biliary Cirrhosis, Myeloproliferative Neoplasms, Nonalcoholic Fatty Liver Disease+ (diagnosed last October),  and Sjögren’s Syndrome.

Well now, aren’t those results a big ray of sunshine? *laughs* Seriously…it seems like a lot, but as I said, they check for over 240 diseases/health conditions and the rest I ranked either typical or decreased risk.

Still, if I had to pick some nasty ones, this list is pretty darned nasty! I mean…the cancers alone, right? *shudder* Although my risk for breast cancer is decreased compared to average. I also have a higher-risk marker for hypothyroidism along with 3 typical markers and 1 lower-risk marker, so it could go either way. Given my current situation, it appears the higher-risk marker has won out! :-/

Anyway…isn’t this amazing? Better to know these things than be in the dark over them!    

Untangling my personal DNA profile

Wow — I don’t know where to begin with this, but here goes: For several years, I’ve wanted to get a DNA test for my ancestry because I was adopted and I know next to nothing about my paternal history and some about my maternal lineage (thanks to my birth brother, Jan, and the maternal family genealogist, Norma. Finding out about my ancestry and potential health concerns (genetically) has been extremely important to me.

I never got the test before because, well, surviving on a day-to-day basis and dealing with a financial roller coaster and bills was a huge concern, especially over the past three years. That’s always been the priority. But I hoped to get the DNA test one day in the far, far future.

Well, thanks to a friend’s generosity, I got the DNA test as an anniversary gift! Like I said, Paul and I never have had a honeymoon, but until we can afford a real one (even if we’ve been married for a while!) we still appreciate the blessings we receive here and there.

Anyway, once I opened the test kit, I sent in the saliva sample (that was sooo gross, by the way! I had to spit for like two minutes. UGH!) and then the waiting began.

As of tonight, the results finally started to come in. Earlier this evening I checked on the site to see what the progress was (because I heard it took up to 9 weeks), and about 80 percent of my data is loaded! I have to wait up to two more weeks for the ancestral composition, but they have the haplogroup from my maternal line up there already — and I’m blown away. What’s more, the health information (which runs pages and pages) is jaw-dropping in its detail.

I can’t believe that this is finally happening and I’ll finally get answers about my ancestry and genetic health profile based on my DNA. This is like a dream that I NEVER thought would come true!

Right now I feel so grateful and blessed by all the kindness we have experienced in light of the extreme stress, panic, fear, and depression Paul and I have coped with as of late. I just want to say that I’m totally blown away by it all.

I also wanted to say that, although it may be boring to some people, I’m so excited over the results that I am going to share them here, so I hope you won’t mind!

This all seems like a dream that has finally become reality. Never thought I would see the day!