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Jane’s Little Helper

08-Aug-11

Lipedema can be depressing. Over and over again, in the lipedema Yahoo group, we hear from women who are shocked, fearful, sad, angry, and just plain down about their condition. In my case, the emotional effects took the form of anxiety, which ramped up around the same time I got my diagnosis (thank you, perimenopause!).

It took me some time to acknowledge that my feelings went beyond simply being blue, and that they were getting in the way of things I wanted to do with my life (like performing well at my job). It took me even longer to get comfortable with the idea of taking medication.

I talked with a good friend who is also a trained therapist. She reassured me that medication for my anxiety would not change who I am — it would just give me a longer fuse, a little more room with which to make good decisions before being overwhelmed by emotions.

My doctor recommended Cymbalta, which also has a pain-relieving effect, and I’ve been taking it for six years. I was sort of hoping it wouldn’t work at first, that I would be able to resume life without medication. But I was definitely doing better after a few weeks on it.

I’m posting this not because I’m proud of needing meds — I’m still not THAT accepting of it — but to encourage other people with lipedema to take their emotional states seriously, and treat them as well as the physical body. The boost I get from Cymbalta helps me move forward with the other important things in my life — job, relationships, friendships, spirituality and exercise.

This specific medication may not be right for you — indeed, you may need to try several before you find the right balance — so it’s important to work with your doctor and actively spend time with people who will honestly and clearly reflect back to you the mental state they perceive in you. There are lots of medications — and lots of thereapists, too. So even though it may take a lot of energy on a bad day, I encourage you to keep taking the next step toward your health — physical AND mental.

Who says big girls can’t move?

03-Aug-11

For those of you who haven’t already discovered her, I’d like to introduce you to Ragen Chastain, of the Dances with Fat (http://danceswithfat NULL.wordpress NULL.com/) blog:

Ragen is a talented dancer, but she’s also a great role model for the idea that you can move beautifully and well even when you’re big.

I do not flatter myself that I move beautifully or well, but in the past several weeks I’ve been swimming almost every day, and I know there’s a difference in my mobility, my flexibility and my mood.

Wait, MOOD? Really. When you find the exercise that fills you with joy and feels good to do, it turns out you become a happier, more focused person. Who knew?

Sadly, for many many years, I did not. And no wonder, really. Lipedema causes pain, and while I know some people who are into recreational pain, I am not one of them. It made much more sense to remain sedentary than to take on hobbies like hiking or tennis or, yes, dancing, because they HURT.

Lipedema, while it is pretty annoying, is much less awful than some things. It won’t kill me. It probably won’t even shorten my life. But there is pain involved, and it’s reasonable for those of us who have it to find appropriate ways to manage our pain. Exercising in water is one good solution. Drugs are another — I’ll post more about that in the future. Avoiding things that hurt is a very reasonable and normal coping response. But it doesn’t have to leave us stuck on our sofas.

Totally RAD?

12-Jul-11

There has been some discussion of late on the lipedema Yahoo group about the RAD diet (http://fatdisorders NULL.org/1046/following-the-rad-diet/). Some people who have tried it say it eases their pain from lipedema by reducing inflammation. RAD stands for Rare Adipose Disorders, of which lipedema is one, and the diet has been reviewed by Dr. Karen Herbst, who is an expert in these disorders.

Like many fat people, I have a complicated and emotion-laden relationship with food. I am instantly suspicious of anything that labels itself a “diet” or anyone who claims to know what I should eat. So my first piece of advice to anyone with lipedema who is checking this out is to do what feels right for you, first. If this diet does reduce your pain and inflammation, it will still not take away the condition or give you beautiful fashion-model legs.

The good news about this diet is that it is not stupid. There’s no “eat nothing but cantaloupe” or calorie-counting about it. At the very least,  it doesn’t appear you will do yourself any harm by following it. (However, it’s always a good idea to seek help from a competent medical professional who’s familiar with your condition before jumping into anything new.)

I disagree with Tina (author of the linked page) that doing this is essential for one’s health. She proudly cites her cholesterol and blood sugar numbers, but mine are also low to normal, and I eat pizza and ice cream and drink Diet Coke. I think that following such a diet, or taking steps in that direction, MAY be beneficial for reducing (not removing) inflammation and pain.

If you’re newly diagnosed with lipedema or another fat disorder, and you find the Web pages about this diet, you may come to believe that it is essential to your well-being. I’m here to tell you that it isn’t. I’m here to advocate for the philosophy described by The Fat Nutritionist (http://www NULL.fatnutritionist NULL.com/) as “Eat food. Stuff you like. As much as you want.” (http://www NULL.fatnutritionist NULL.com/index NULL.php/eat-food-stuff-you-like-as-much-as-you-want/)

For me, the cost of the diet — the giving up of experiences and foods that I like and love — is greater than the potential benefit. I know not everyone will make the same choice I am making now, and I also know that I may change my mind as I go along. But I wanted people to know that there is more than one choice available.

Exercising and loving it

11-Jul-11

When it comes to working out, I freely admit that my best sport is napping, followed closely by reading. So why have I suddenly started exercising regularly and reaping the benefits? Simply, I moved to a new apartment building that includes this:

the pool

Yes, an indoor pool. It’s perfect for me — no need to deal with locker rooms or changing in front of others, because I can do all that in the privacy of my own apartment. Because I work from home, I can often go during off-peak hours and enjoy having the pool all to myself for a workout that’s a combination of swimming and water-walking.

If you have lipedema, you know that swimming is one of the best types of exercise for people like us. If you know anything about fitness, you know that the best type of exercise for any individual is the one she will show up and do regularly. I’ve been using the pool three times a week and might do more this week just because it FEELS SO FREAKING GOOD.

 

Relief for itching

11-Jul-11
puppy itch

(Photo: Vicki Rogers)

Lipedema, particularly when it has progressed to include lymphedema, leaves the skin vulnerable to infections and cellulitis, and skin care is a big part of any new lipedema patient’s learning curve. Before I was diagnosed with lipedema, I had been hospitalized with cellulitis in my legs, and the infection left red blotches on my already unlovely legs. (If you look carefully at the photo in the previous post, you can see this.)

One of the worst things you can do with skin that is affected this way is to scratch an itch. Scratching may temporarily relieve the itch, but it causes trauma to skin that’s already been invaded or violated in some way. So in the season of bug bites and heat rashes, what’s an itchy person to do?

Tom Kincheloe (http://www NULL.rivertownlymphedemaclinic NULL.com/), a certified lymphedema therapist in South Carolina, posed this question on a number of online groups related to lymphatic disorders. Here is his list of ideas, compiled from the collective wisdom of patients and professionals:

Here is a compiled list of all the ideas that were submitted by several
different groups (including Men’s) as well as a few from professionals not in
the groups:

1. Blowing fan on wraps to keep cool
2. Eucerin Calming Itch Relief
3. Topicort spray
4. Neurontin/Gabapentin, Lyrica (oral medications for nerve pain, sensations)
5. Shower (hot water for a few seconds) — NOT with wraps on. PLEASE BE CAREFUL AS HEAT CAN EXACERBATE LYMPHEDEMA!!
6. Back massager (for temporary itch relief through wraps)
7. Calmoseptine (topical)
8. Grape Seed Oil (available in grocery stores)
9. Niacin in an oil carrier (custom Rx)
10. Borage lotion
11. Calamine Lotion
12. Vermont’s Bag Balm (available at some pharmacies, farm feed stores)
13. Aquaphor
14. Aquaphor mixed with Gold Bond powder (assuming Anti-itch powder)
15. Ice packs (available in small, thin size for insertion under wraps for temporary relief)
16. Zim’s Crack Creme (www.crackcreme.com)
17. Castor Oil
18. Cocoa Butter
19. Epaderm
20. PrameGel Gel (generic: pramoxine) a topical anesthetic
21. Tahitian Noni International Skin Supplement

Other suggestions:

Consider the possibility of allergic reactions to materials and especially detergents. Commercial detergents used to clean materials such as stockinets may cause some itch reactions to particularly sensitive skin. If you suspect this to be the case, wash the stockinet thoroughly before re-applying. Ask your therapist for an additional stockinet to wash BEFORE you wear it in case you do have a reaction.

Some people are sensitive to certain types of chemicals in common laundry detergents, especially under compression wraps. Just because you don’t itch elsewhere, don’t be too quick to rule out detergent as the cause. This skin being wrapped may be more sensitive, especially when combined with pressure, moisture and heat (body). Consider the possibility of using a non-allergenic type detergent or simply switching to another brand. Another idea: wash the stockinet by hand with Dawn Dish Detergent to remove any trace of commercial detergents.

Another problem that has occured concerning stockinets: Some are made with 100% cotton and others are made with polyester or polyester/cotton blends. Consider switching from one type to another if your therapist has both fabrics available.

If you have pets, consider animal dander and hair as possible sources of skin irritation and itching. While you might not be allergic to animals in the normal sense, dander and hair from animals might possibly cause allergic reaction to hypersensitive skin especially when wrapped. Keep the wraps well covered (e.g. wear long pants that cover the wraps) to prevent dander and animal hair from slipping down inside the wraps.

Some notes (and warnings) about itch remedies and scratching:

Please be aware that if you try any of the above remedies, that you do so AT YOUR OWN RISK! Before taking ANY oral medications for itch control, please check with your physician first. Some medications and herbal remedies may react with
other medications. Follow the usual routine of contacting your physician immediately if you develop any unusual symptoms. WATCH FOR ALLERGIC REACTIONS WHEN TRYING ANYTHING NEW! Remember, too, that what works for one may not work for another.

Neurontin (generic: gabapentin) is a relatively inexpensive prescription medication that fits into the category of “multiple use” meds. It is used primarily with nerve-related problems such as nerve pain, restless leg syndrome, phantom pain/sensation in amputees, nerve tics, relief from radiation treatments and other uses. It has NOT been tried for management of itching that may be related to nerve compression that I am aware of but it was suggested as a possible use. Therefore we would not rule it out.

Fungal cremes, lotions and sprays (e.g. Flurocinanide, over-the-counter fungal applications) may help with itching but should NOT be used if fungal infections are not present. This can, according to professionals, cause stronger fungicide-resistant spores to form.

Likewise, cortisone-type applications are medications that should not be used without first consulting with a physician.

And last, but not least, if you MUST scratch, PLEASE do not use your fingernails! Fingernails can break the skin allowing creation of portals where bacteria can enter. Fingernails also often harbor a variety of bacteria including those that cause cellulitis and MRSA type infections. If you must scratch, use a dry, clean washcloth and rub the area GENTLY to avoid breaking the skin. Use your fingers to gently rub the itching area (wash them first). Never, ever use your fingernails or other sharp objects!

If anyone else wants to chip in and add to the list, please do so — we always have room for more!

Itching is a frustrating symptom often faced by those with lymphedema/lipedema and other ailments that can eventually, especially when scratching, lead to exacerbated conditions and complications such as infections. Itching can also cause patients being treated to become non-compliant with their treatment regimens. It should not be disregarded as a serious side effect to both lymphedema and treatments.

Thanks, Tom, for letting me republish this!

Normal

30-Jun-11

Photo by Michael Berube, goodphotos.com


First, I want to post this picture of me.

It’s a lovely picture of a delightful day — I’m doing a reading in the wedding of two of my favorite friends, and the photographer, Michael Bérubé of GoodPhotos.com (http://www NULL.goodphotos NULL.com), is both charming and skilled.

So, naturally, when I saw it I sank into a black mood of self-hatred. Am I really that big? That ugly? That horrible? Dear God, are those my LEGS?

Fortunately, I have been around this block enough times that it only took a couple of days to talk myself back to a relatively stable level of self-acceptance. I realized that this happens often when I am photographed full-body, that I was clean and appropriately dressed for the occasion, and that my friends like me and care about me for who I am, not what I look like. (I’m lucky that way, of course.)

Still, summer is not a kind month when you have legs like mine. And no matter what time of year it is, there is always some segment of the population that looks at me and thinks I am What’s Wrong With Our Society. Sometimes this takes the form of people yelling profanities (apparently “fat” is a dirty word that can be mixed with other dirty words). Other times it takes the form of well-meaning conversations along the lines of “I’m only concerned about your health.”

My health is my responsibility. Everyone else can either accept my body the way it is or look at someone else. And for the record, I went to the doctor today, and my blood sugar, blood pressure, and cholesterol levels are all completely NORMAL. Not “normal for a fat person” or “pretty much the same as last time,” but NORMAL. I may not be the prettiest person around, but I’m also not the sickest.

Welcome to biglegwoman.com!

27-May-11

My blog finally has its own domain! I’m going to be redesigning and improving things around here as I go, so feel free to make suggestions.

Go TwizBots

20-Dec-10

This update comes to me from the excellent Heather Ferguson, who has done so much to advance the cause of legislation that would help lymphedema patients receive the treatments they need. (She is the guiding voice behind HR 4662, (http://www NULL.govtrack NULL.us/congress/bill NULL.xpd?bill=h111-4662) the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.)


The TwizBots (http://twizbots NULL.webs NULL.com/), of Stillwater, Minn., are a sixth grade Lego League team which has adopted lymphedema treatment as its mission. They have won their regional championship and are headed to the state level! (Lego League sounds like a blast. Why didn’t they have this stuff when I was a kid?) 


Anyway, a TwizBots coach writes: 

“The TwizBots head to the State First Lego League Tournament in January with a first place award for their research and development of a lymphedema treatment garment called the LymphESocc. The team has shared their passion for those suffering with lymphedema and the support of the Lymphedema Treatment Act with the community with the descriptive brochure that they have designed.

The TwizBots always display their passion for others in their commitment to the competition in all that they do. The entire group displays amazing traits of kindness, teamwork, hard work ethics, empathy and team spirit. At the Regional competition the team was connected and focused and, like the announcer stated, showed that a team with true teamwork and sportsmanship tends to do great in all that they do. And did we ever!

The TwizBots were awarded the 1st place award for their Research and Presentation along with the 1st place award for Teamwork and also won the Head to Head competition for the Missions of the robot at the competition tables. 

The team is thankful to the professionals that supported the team, believed in the kids and gave their time and knowledge to this research and presentation project on lymphedema. We are especially grateful for Dr. Hutchison and  Dr. Oddsson for all of their help.

Wow! The team is now able to educate so many about lymphedema and bring anawareness to a disease that is many times overlooked. The judges were impressed and moved by the team’s passion in supporting the HR 4662 Act and commended the kids on being so actively involved in making a change. Root them on in January!”

Gladly! Go TwizBots! (Here’s a picture of the team in their HR4662 shirts)

(http://2 NULL.bp NULL.blogspot NULL.com/_E86K6-isvvA/TQ9n8BItjTI/AAAAAAAAAGc/iqbokXXtUV0/s1600/TwizBots-2 NULL.JPG)

A sizeable comeback

28-Oct-10

I will not dignify Maura Kelly’s piece about fat people in Marie Claire magazine by linking to it, but suffice it to say that she discusses how bad it makes her feel to watch fat people kissing or walking across a room. 

My response to that might best be delivered with a single finger, but Plumcake at Manolo for the Big Girl (http://manolobig NULL.com/)has a much classier way of looking at it (http://manolobig NULL.com/2010/10/27/dear-maura-kelly-and-marie-claire/)
Sample quote (but go read the whole thing): 

It truly doesn’t matter to me what you think of the way I look. You don’t hold any power or authority by right of your thinness. My life is great. I’ve got a great job, oodles of fans, love, happiness, flawless tits and a freakin’  Birkin I didn’t have to pay for. I’m doing Just Fine.

Mobility is getting worse

25-Oct-10

We’re back into compression-stocking weather here in Maine. Yes, I should wear them all year round, but to do so in summer is more than this body can stand. (As if I didn’t already get hot flashes…)

I’m also back in school, working on my master’s in computer science, and starting a new job this week (yay!). Part of my goal is to put aside enough money over the next few months to get a new apartment. Why? Well, this one is on the first floor of an old Victorian house, which means I have to climb stairs to get inside. That’s getting more difficult over time as my legs and knees and hips become more painful. In fact, it’s becoming clearer that I’m going to need to take on some kind of mobility solution such as a walker or wheelchair.

And I’m grateful that there are aids available to help me stay mobile, but at the same time, wow, this is not a fun turn of events. Aside from pain and inconvenience, there’s the stigma that will come with being a fat woman in a wheelchair (you just know how many people think that because I’m fat I’m a sign of All That Is Wrong With Our Nation), and I should probably resign myself to a life as a crazy cat lady because who’s going to date the chick in the wheelchair?

I’m determined to preserve as much independence as possible, to keep working and supporting myself and being active in my community. But I’ll probably have some sad moments as well.