Three weeks of therapy

I've just completed three weeks of therapy for lymphedema, and my legs are noticeably smaller and also less painful! Danielle, my therapist, is smart and funny and knows her stuff. Besides patient care, she's also active working with support groups, giving presentations in the community and seeking out further opportunities to improve her skills and spread the word about lymphatic disorders. She rocks, and I want to go back to her next year!

I was also impressed with the Mercy Lymphedema Center. There are two lymphedema treatment centers in my hometown, which is a luxury indeed! The office was spacious and private -- quite a change from my last experience of this therapy two years ago, when Mary and I worked in a small area curtained off from a regular physical-therapy room.

I'd also like to say a good word for Chrissy, Mercy Lymphedema's receptionist, who was friendly and organized, and helped keep things moving smoothly. She's one reason I chose this treatment center over the other one in town -- I'm sure they're nice people, but my call was returned by a therapist, not an administrative person, and Chrissy's competent handling helped assure me that my therapist would have time to focus on caring for her patients.

At each session -- three or four times a week for three weeks, so quite a time commitment -- Danielle did a quick round of manual lymphatic drainage, then wrapped one of my legs (we alternated right and left) in short-stretch compression bandages. This combination stimulates the lymphatic system to drain fluid more effectively, then pushes fluid from the affected limb -- in my case, the legs -- up into the system to drain out.

After the sessions, I was supposed to try to keep the bandaging on overnight. Sometimes my legs drained quickly and this didn't happen -- the bandages would fall down of their own accord as the leg got smaller. I was also walking around with one bandaged leg and one bare one, resulting in a rather zombie-like gait, some interesting footwear choices and usually cold ankles on the un-bandaged side. I found that I was frequently tired after treatment and (as you might expect with all that fluid moving around) it was a good idea to stick close to a bathroom for the next several hours. I also had to roll up my bandages -- this took some time, but Danielle assures me that the bandage-rolling devices available on the market are more trouble than they're worth -- and remember to bring them back for my next treatment!

In other words, this is not an easy or convenient treatment, though I'm grateful that it's available to me. It would be tough to manage if I worked in a field where I had to present a professional appearance at all times.

At Danielle's recommendation, I'm also going to seek out some straight-up physical therapy to help with hip and knee pain that is starting to get in my way. The idea would be to work in their pool to develop an aquatic workout that I can do on my own. (Then I'll have to figure out how to make myself actually DO it.)

She also, very tactfully and gently, brought up the subject of weight loss. Which I need to do, and I appreciated hearing it from her, because I know she understands the lipedema side of my situation, so it's different than hearing a doctor who doesn't understand lymphatic disorders and just assumes that my legs are fat because I eat too much. A lot of lipedema patients get this, and are understandably wary of the medical establishment as a result. I am not ready to tackle that yet, but will bear it in mind.

I should do this therapy every year, but last year I was kind of busy getting divorced. It was nice to have the luxury of being able to schedule it during my winter break from grad school, when I seldom had to be anywhere looking like a grownup and could take care of myself as needed.

Late in the treatment process, I was measured for new compression stockings. Insurance will pay for two pairs of stockings, because they have to be air-dried, and have to be worn every day. Last time I did this, I had the option of two fashion colors, black and beige, and chose black for both pairs, building an entire wardrobe of black skirts and black shoes to match. Now I've got a new black pair coming, but for my second pair I have choices -- not only black but navy, red, brown and gray! (And beige, but let's just not go there.) I will probably just be boring and get the second pair in black as well, but my friends are after me to go for the red. I love red, but I'm not sure I want to call that much attention to my legs! It's nice to have the choice, though.

I am feeling rather lucky in general right now, despite the pains and inconveniences of lipedema. I lost an old friend (and onetime boyfriend) to cancer last week, and he left behind a wonderful wife for whom I feel deep sympathy. Another friend, a doctor and mother and maker of quilts, is in hospice as I write this, and her end is near. Of course, part of the problem with having lots of wonderful people in your life is that sometimes you lose them too soon. But one thing can take from this is gratitude for the many ways in which I am fortunate.

Welcome to the Fat Disorders Research Society

I'd like to celebrate the advent of the new Fat Disorders Research Society which seeks to raise money to fund research into lipedema, Dercum's disease, Madelung's disease and familial multiple lipomatosis, along with related conditions.

Much of the content bears the stamp of Dr. Karen Herbst. Though she is not credited with writing it, she encouraged patients to work together to help fund treatments and research into their diseases. One presumes that she is also the guiding spirit behind the "Ask the Doc" section.

I'm hoping their forums will be a positive place for sharing information and tips for daily living. Unfortunately, the forums are currently accessible only to those who donate money to the organization, and right now I'm not in a position to do that. When I am in funds again, I will donate, and ask that some of my money go to fund a forum subscription for someone who can't afford it.

I also donate to the Lymphatic Research Foundation and hope you will do the same! Their projects include funding two-year grants to encourage junior researchers in the field of lymphatics. They also recently sponsored a free one-day symposium on lymphatic disorders in New York. I hope the FDRS will be inspired by some of the good work done here.

Roundup of recent thoughts

I've recently become a fan and follower of The Fat Nutritionist, and I'm delighted to point to this post about an emerging vision in the nutrition community that people are complex, that there are no simple answers to problems of food and fat, and that what we think of as "health" may need to be re-examined.

I also wanted to point out the most beautiful woman I've seen in some time. Anita Rachvelishvili sang "Carmen" to open the season at the famed La Scala opera house. Her talent was widely praised, but she's also GORGEOUS -- and I'm not normally wired to appreciate women that way.

She's got a great story, too -- born in war-torn Georgia, her parents had to sacrifice their own dreams of artistic success. I'm not an expert but her YouTube videos sound gorgeous too. OK, let's just call this a little girl-crush but I want to be her when I grow up. Opera may be one of the few performing arts in which one can be beautiful without being stick-thin, and I was drawn to her because she's so different from all the other women marketed to me as being "beautiful." (And yes, I know there's pressure on classical and opera singers to be conventionally attractive as well, with successes awarded based on looks instead of talent.)

In other news, I have three exams on Tuesday and then my first semester of graduate school will be done! I am so glad I did this -- it's fun and a challenge.

On the lipedema Yahoo group, we've been talking about tips for daily living -- things like using wheeled stools in the kitchen, or other ways to stay functional when your legs hurt.

My tip is to use a good backpack. I find it much easier than managing a wheeled suitcase or carrying a shoulder bag -- it leaves my hands completely free to deal with balance issues and lean on railings, plus it doesn't pull me off balance. The one I have (a gift from a previous employer) is a Targus Port 3.1 which is miles better than the kind of backpack you buy in a discount store -- quality padding on the back and shoulder straps, compartments for everything, major protection for my beloved laptop, and it's stylish enough to blend in when I'm in an office environment. I expect it to last a long time, but I'll invest in something of equal quality when I need to replace it.

My interest has been piqued by the fact that my state, Maine, has enacted a law to make it easier to obtain medical marijuana. I'm not sure I need that level of pain control, but it would be an interesting alternative to opiates. I've actually never smoked it (and probably wouldn't admit it if I had -- my dad might read this) but I might bring it up with my doctor next time.

Anytime I start feeling sorry for myself, I get a reminder that there are way worse things in life than lipedema. A friend is dying of cancer, and my beloved ex-mother-in-law has been in the hospital with heart trouble. I have so many blessings.

Interesting

Amanda, who posted a blog last year about her liposuction surgery for lipedema, has taken it down. I don't know why, and I hope she's still healthy and happy, but I am sorry not to know how she is doing.

It is hard not to suspect that she has experienced side effects from the surgery and has been unable to maintain the attractive shape in the post-surgery pictures she posted. I hope that's NOT the case, but the disappearance of her blog does not give me a lot of confidence in liposuction as a treatment for lipedema.

Amanda, if you're out there, would you let me know how you're doing?

"Before" photos

I went to a new therapist this week, Danielle Allain at the Mercy Hospital Lymphedema Clinic in Portland, Maine. She took these "before" photos of my legs and I'm posting them here for reference. Once you know what to look for, lipedema is pretty easy to spot. My case is somewhat advanced, but I'm hoping this will add to the available information on lipedema for those studying the condition. If it would benefit you to see the larger versions, e-mail me and I'll send them along.

The red blotches are from my 2003 cellulitis outbreak, before I knew what my condition was, or what I needed to do in terms of wound care. There's also a scratch higher up, courtesy of this young lady. It's a good thing she's cute.


Danielle, my new therapist, is bright and kind and funny, and I look forward to working with her! The relationship between a lymphedema patient and the MLD therapist is an important one -- you're seeing this person a lot and she's touching you in some pretty personal places. Fortunately, in my experience the field tends to attract people who are good at their jobs AND care a lot about their patients.

Acceptance

Today I bit the bullet and sent out my application for a handicapped placard. I don't like the idea of admitting to being "disabled" -- I'd much rather be "abled" and NOT hurt, but the reality is that I do not do well walking long distances or standing for long periods of time.

I also know that some people seeing me will judge me for being "one of those fat people who can't walk." Yes, I'm fat, and yes, I have a disability, and yes, I'm also still a person with a brain and a heart and something to offer the world, and it makes me sad and angry when I think about how many people will never see past the first two things.

This week is also the one-year anniversary of my divorce being final. I'm definitely living a good life now, but I'll allow myself a little time to be sad this week. During the emotionally charged final weeks before I filed for divorce, my ex brought up my health/weight/mobility as a reason why he no longer wanted to be with me. I know that his leaving me was more about his issues than mine, but that still hurt a lot. I sometimes hear from concerned husbands looking for information about how to help wives with lipedema, and while I'm happy those women have someone who cares about them and supports them, I'm also a little bit sad that my ex wasn't able to be that man for me. Perhaps at some point, some other man will -- the one I'm dating now, or someone else. In the meantime, I'm working on making the best life I can for myself.

Thankful

This blog tends to hear from me when I'm unhappy about something, and I want to adjust the balance a little. I posted this elsewhere today and I'm adapting it a little for here:

I am so very thankful for so much in my life:

• My dad is alive and happy and I've gotten to be there for him and spend some real time connecting with him this year. He's a wonderful guy.
• My boyfriend is smart and funny and charming and adorable and has done much to restore my faith in love.
• My roommate has been a good and supportive friend who also doesn't hesitate to tell me when I'm being ridiculous. And he makes a darn good chocolate cake.
• I have an amazing number of interesting, smart, caring, funny, fantastic people in my life.
  
• The past year has taught me that I can survive an awful lot and still land on my feet. I'm grateful for that knowledge, and for not needing to do it all again just now.
• I'm amazed and grateful for the opportunity to go back to school -- it has revved up my mind and put me back in touch with a side of myself that just plain loves learning.
• I'm thankful that my house sold! I live in my favorite neighborhood of my favorite city in the world. It's wonderful.
• I'm grateful that I have skills that some people are willing to pay for, and that I can sustain myself in a comfortable (almost luxurious) style even while working part-time and going to school.
• I'm grateful for a car that runs, for medical insurance, for cats and Macs and books and chocolate, for the beautiful ocean, for having had the chance to know Terri-Lynn [a friend who died of cancer in May], for my best friend's grandchild who won't be born till March, for hope and love and creativity.