Wednesday, July 2, 2014

Living With Lipedema - Visiting Downtown San Antonio

A few weeks ago we took my mom's advice and decided to visit downtown San Antonio on a Sunday. We actually took Sunday and Monday in order to take advantage of the hop on / hop off tour from downtown. I was hoping we could catch the trolley at one of the missions near us, but after calling the company to confirm this idea it was out - we had to brave our way downtown.

I do recommend going on a Sunday. The traffic wasn't too bad and we were able to find parking.

We bought hop on / hop off tickets for the Alamo trolley on Sunday and got our second day passes for Monday. It was late afternoon so for this first trip around we just road the trolley for the one-hour tour and decided where we wanted to go the next day. 

The trolleys were all handicapped accessible, and that's important for those of us with more advanced lipedema. If you're traveling in a wheelchair or scooter, all the trolleys had wheelchair lifts. Some people got on the trolley then sat in a regular seat after boarding. Others sat in the back of the trolley in their chair. 

 We toured the Alamo that evening then came back for the downtown trek on Monday.

Our first stop was the King William neighborhood. We had an hour in this historic neighborhood. We walked past several historic homes and passed a few that were open to the public and made some plans to return on another day to tour the homes and grounds. We also walked along a portion of the RiverWalk, an 18 mile stretch of bike and walking paths that lead from downtown San Antonio along the river towards the missions outside of town.

The Riverwalk is very wide, accepting wheelchairs and powerchairs easily. However, not all access points to the walkway offers ramps for easy ingress / egress. There are maps of the Riverwalk so you can see what areas have handicapped ramp access available. 

We also visited Mercado, an indoor mall with several interesting Mexican imports. We're planning to go back for Christmas gifts. Then we hit the Main Plaza where we walked along the riverwalk some more.

One of the highlights was our boat tour along the river. As Bexar County residents, we even got a discount on our ticket. The sun was setting and the day was cooling off - the perfect time to be on the water. We saw several places we're looking forward to visiting on another trip and we learned a lot about the downtown area and the river. And I'm thankful that the tour guide mentioned getting to Hemisphere Park via the Riverwalk - a quick 5 minute walk and we were there instead of a 20 minute walk on the busy streets above.

The website for San Antonio Cruises says all boats are ADA accessible. Be aware that the boats can be pretty crowded. As you can imagine, they want to fill every seat. There are handrails for stepping in and out of the boats and the steps weren't too steep. 

We ended our day of sightseeing walking through Hemisphere Park, the site of the 1968 World's Fair. We walked over to the Tower of the Americas but didn't go up. It's on our list for next time. I did make reservations for a birthday lunch at the Chart House restaurant, a revolving restaurant at the top of the Tower.

Some tips for traveling downtown:

Parking - know where you want to park. All lots have a fee, but the ones run by the city are less than a private lot. If there is an event going on the parking may be more than listed. I started with the website and found a lot near the downtown area where we needed to be. It was a city lot and cost $2.50. We'd originally paid $10 to park on Sunday, so knowing about these other lots was definitely worth it. The website gives the address of the lot and I found it easily using Google Navigator on my phone. If you're staying in a hotel, walk downtown if you can or see if your hotel offers a shuttle into the area. If you need handicapped accessibility, be aware that some of the cheaper lots may be several blocks from downtown. 

Wear good shoes.

Restrooms can be difficult to find. On Sunday there were portable toilets set up but they were gone on Monday. If you're a paying customer, you're welcome to use the restrooms in the businesses downtown, but many have signs stating that there are no public restrooms. 

Check out the rest of the pictures from our Alamo / San Antonio trip in the album on DropBox.

Thursday, June 26, 2014

Lipedema is NOT obesity

By Tatjana van der Krabben

Lipedema is not obesity. It's like comparing apples and oranges. We say apple - or rather pear - to our doctor, he/she replies orange. We've been going around in circles for some time. Some anomalies in our fat cells have already been reported, like hyperplasia of individual fat cells. The fat distribution in lipedema is also very distinct. Yet, we lose our primary at the word 'fat'. There wasn't much else to prove it's apples and oranges, not just oranges. The fact that our blood sugar, blood pressure and cholesterol is mostly normal? Dumb luck and ticking time bomb. Those who did have elevated values? Aha, they proved our doctors' point.

Times are changing. Research is changing. Recently I attended two lectures on studies that specifically compared lipedema and obesity and they found clear differences.

Smeenge, Damstra and Hendrickx found that patients with lipedema have muscle weakness. We have 30% less muscle strength compared to what is considered 'normal'. The obese control group didn't share this muscle weakness. This is unpublished at this point, but you can find a summary in English here.

Hoelen, Van Zanten and Bosman looked at the value of ultrasound as a diagnostic tool in lipedema. Again, in the control group obese women were included. I've seen the slides at the lecture in May. It doesn't take a medical background to spot the differences between the scans that were showed of a person with lipedema and of a person who is obese. Also, it was found that the BMI of lipedema patients doesn't match the circumference of their waist; it was smaller than you would expect based on the BMI number. Meaning: BMI doesn't add up for lipedema.* Again unpublished at this point, but you can find some information on this research in English here.

Lipedema is NOT obesity and some proof of that is finally coming our way. Why is that such a big deal? If you are on team obesity, you are, but if you're not, they should be looking at the issues you DO have, not what they assume they would be. They can't help us or think with us, if they don't see us for who we are.

In all fairness, I've seen studies in the past pointing at lipedema-specific pathology, but these studies are all but forgotten. Fingers crossed these studies get the attention they deserve and stick.

*Get in line, because BMI doesn't add up for a lot of different groups of the population. Also see my blog on BMI.

Thursday, June 19, 2014

Lipedema captured on film

By Tatjana van der Krabben

On June 14, 2014 a Dutch Facebook group launched a short info film on lipedema at the NLNet conference. It’s in Dutch*, which may very well be gibberish to you, but I want to share with you the story of the making of and the message this group and myself as a member of this group would like to share.

In Augustus 2013 a member of the Lipedema Friends and Info Page started dreaming out loud: what if we could do an information film on lipedema in Dutch, something catchy, to raise awareness. A quick search taught us nothing like that had been made. Yet. And that’s when we got ambitious. It had to be catchy, not too long, provide useful information, have a feel good factor, a message, be suitable to incorporate into a lecture for a varied audience and professionally made, please and thank you. Why this long wish list? We could only – hope to – raise enough budget to do one film and the need for material to educate the public, (new) patients and medical professionals was there. It simply had to be versatile and of sufficient quality to take it places.
After that, like pieces of a jigsaw puzzle, everything started falling into place. Someone knew a professional filmmaker who was willing to help and shared our vision. Someone arranged at work we could use a space and facilities there to shoot the film. One of the members of the Facebook page who offered to help is also a board member with the foundation NLNet for lipedema and lymphedema. One thing led to another and NLNet offered us time at their conference to do the launch there. We formed a work group of four and raised the needed funds through crowd funding among the members of the Facebook page. All members were welcome to pitch in ideas for the film, after which I wrote the script. Then we asked members to participate. We got all stages and different ages represented: sixteen gorgeous ladies. We also made a conscious decision to show our legs anonymously and in motion. You know that distinct look of the back of your knee in advanced cases with that extra padding? You don’t see that from the front and moving images are also more attractive to watch. The film therefore shows the legs from all sides.

Every meeting we came to the same conclusion: we wanted motion, movement, energy! Movement became the theme. We need to move forward and we literally want to keep moving. In its wake came the second point we wanted to make: the value of early diagnosis. Catch it early and you preserve (most of) your mobility, energy and your true figure. Although the “spoon scene” explains how daily activities can drain you, we hoped to convey joy as well. Lipedema may interfere at times, but we certainly have a zest for life.

So far so good, but the only pro in da house on D-Day was the filmmaker. Sixteen women, knowing very well they would also be showing their legs later on and not so anonymously in front of this man. Not to mention eventually seeing it back on a BIG screen. But he worked miracles and approached the topic with great integrity and a little humor. Sixteen women, some already knew each other, others we only knew from Facebook until then, but at the end of the day we had bonded. I think it shows in the footage. A little secret from behind the scenes: at some point our chatting was so loud, we disrupted the filming of a scene in the other room. In the end we all sat in the same room to watch the scene being filmed to make sure we kept quiet for a bit!

Last Saturday with the launch it all came together. The group was almost complete, the filmmaker was present and we all got to watch it together. Afterwards we were asked to come on the stage and Henry Scheer, the filmmaker, gave a heartwarming speech and offered on the spot to also help us with an English version. So Henry, we got witnesses! Just kidding, he’s been a great support throughout. This, and the fact several therapists approached me immediately after to ask if they could use the film in future lectures, showed it was a launch in the true sense. And yes, they can use it. This is what the film is meant to do.
We started with a small snowball and now it’s picking up speed. Carry on little snowball. May you travel far and kick butt.

*English version of the film to follow.

Thursday, June 5, 2014

Lipedema and me

By Sylvie Giroux
Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...
I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

Read more by following the links in our Lipedema Awareness Blog Hop

Wednesday, May 28, 2014

Visiting San Jose Mission in San Antonio, TX

By Christina Routon

Since moving to San Antonio a month ago my life has been a whirlwind! But we've finally gotten the house (mostly) unpacked and settled into our new jobs. It's now time to do some sightseeing.

Mission San Jose is part of the National Park System. It's one of five missions set near San Antonio with the most famous mission being what's known today as the Alamo. We started our mission journey here because the visitor's center for the National Park Service is here and they have a 20 minute video about the indigenous people here and how they came to live at the missions.

Mission San Jose is known as the "Queen of the Missions" and is still an active parish today. In fact, all of the missions except the Alamo are active churches. The local diocese handles maintenance and repair on the church building while the National Park Service cares for the rest of the property.

For many of us with Lipedema, we have mobility issues or problems being on our feet for a long time. This mission is very easy to visit with a flat layout and paved trail around the courtyard in case you use a scooter or wheelchair. There are benches all around the courtyard and plenty of shade under the mesquite trees. There are about three steps going into the church if you want to go inside.

The weather was awesome the day we visited, with a nice breeze blowing through the trees. But sunscreen is definitely recommended in the Texas sun. The wind makes it feel cooler than it really is and I did come home with a bit of sunburn.

We'll be visiting the rest of the missions, including the famous Alamo, within the next month. If you want to see the rest of my photos from Mission San Jose, check out the shared album in DropBox.

Every now and again we want to focus on the good things in the world. Just because we have Lipedema doesn't mean we need to give up all of our hopes and our dreams. We are a diverse group of women with awesome hobbies, jobs, families, knowledge and skills. I invite anyone who wants to participate to send in a post about how you're Living with Lipedema.

Other Lipedema lifestyle posts: Tatjana - Lipedema in the World

Friday, May 23, 2014

Lipedema conference - Part 2

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

The third lecture was by Wouter Hoelen, MSc, a therapist and one of the researchers involved in a study using ultrasonography for diagnostic purposes. With lipedema often being confused with obesity, this study focused on the question whether you can use ultrasonography to differentiate between obesity and lipedema. A nice touch: almost two years ago, at a Dutch lipedema meet, these researchers were given the opportunity to see test subjects on site. Those attending the meet had the opportunity to participate in the research if they wanted to.

Mr. Hoelen walked us through various slides, showing that you do obtain a remarkably different picture in lipedema compared to obesity. The fascia or connective tissue should reveal a layered image. The fat, as seen on an ultrasonographic scan, normally shows horizontally stacked little layers, marked by white lines. When showing a slide of a scan of lipedema tissue, the layers where fewer and not so neat. The fascia in lipedema shows less structure. The question was being raised whether that's (trapped) fluid. Another question that was raised was if this could explain lipedema pain and tenderness. The other matter being that this layered section of your fat is supposed to be flexible and mobile. This is now being hindered. For this, stretching was recommended.
In his lecture he brought up two more interesting points:

1. Despite lipedema being linked to puberty and beyond, he has observed suspicious characteristics in younger children.
2. They also found that BMI was not in sync with waist circumference in lipedema. Based on the calculated BMI you would expect a bigger waistline. (personal note: HA!)

Joyce Bosman, edema and physical therapist, explained about a new device called the indurometer. It's not on the market yet and she was among the happy few who got to test it for diagnostic purposes.

Lipedema and lymphedema cause changes in the tissue. The lymphedema skin tends to become tougher, the lipedema skin spongier. The indurometer measures to what extend the skin can be compressed to see if the skin has become either tougher or spongier.

Hopes are that the more accurately progression can be measured, the better treatment plans can be drawn up.

She truly stepped on it in this lecture, to allow for a little bit of time for a fellow board member of the foundation NLNet, Barbara Boots, to talk about the Dutch lipedema information film and show its trailer. A nice intermezzo - yes, I'm biased. This is the Trailer of the Dutch Lipedema Film with English subtitles. Note: it will only play on laptop or pc due to music rights that apply.

The fifth lecture was from three physical therapy students. The Dutch Lipedema Day Foundation had provided them with a research project as a graduation project. They set out to research appropriate exercise for lipedema and work towards a directive. It's all theory at this point, but they incorporated working on loss of strength and Graded Activity, to name but a few things.

The best part of it would be that the Dutch Lipedema Day Foundation has turned the tables. They don't only approach researchers to present their research, they also encourage research and point out where research is much needed. That brings me to their latest endeavour. Research is not only time consuming, it's costly. Everybody needs funds, few get it. The Foundation has introduced awareness bracelets and key chains at the conference to help raise funds for lipedema research. There are more lipedema events coming up in the Netherlands next month. So for starters they will be offered there.

The bracelets and key chains are grey and yellow. Grey for the large grey area regarding knowledge about lipedema. Yellow for the light, hope and progress that is being made. Not coincidentally the colors of the foundation. The text reads: Lipedema awareness and support. If you want to know more about the bracelets, please let me know in the comment section and I'll get back on that.

Monday, May 19, 2014

Lipedema conference - part 1

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

Lipedema Directive 2014
The day opened with dr. R.J. Damstra, dermatologist  and president of the Lipedema Directive 2014. The lipedema directive is the first Dutch set of guidelines for lipedema treatment, to be applied nationally. It was approved recently and is yet to be published.

It's multi disciplinary: doctors and therapists are supposed to contribute to treatment. It zooms in on functioning and limitations and encourages to look beyond the accumulated fat and also addresses, for instance, loss of strength, knee problems and foot problems. Liposuction gets a mention in this context, but strictly to enhance mobility when absolutely necessary. As dr. Damstra puts it: it's surgery and damage of the lymphatic system is realistic in surgery. Although he does acknowledge that today’s tumescent method is far, far safer than the old dry method.

It also encourages testing hormones for additional health issues: thyroid, adrenal glands, pancreas and pituitary gland. The patient’s weight is also addressed. Yes, 'weight'. After all, your weight may hinder you. This is not intended as a claim to say you can lose it all, if you only wanted to. This is about getting to be the best you can with this condition. He added the example that the population as a whole is getting bigger, which makes it an issue to each and all, including those with lipedema, to take responsability for their food intake, compared to their level of activity.

Dr. Damstra refers to lipedema as a chronic condition, much like diabetes. Something to learn to live with and monitor. He encourages a pro-active attitude and doesn't support endless sessions with therapists. He differentiates between treatment and maintenance phase, where the patient takes over and applies the tools as taught.

Dr. Damstra brought forward a couple of interesting statements throughout his lecture.

  • To him lipedema is not lipedema until physical complaints beyond (some) fat accumulation occurs. So according to him, just having the pear shape doesn’t equal lipedema.
  • Lipedema does not stem from a lymph vessel deviation, therefore it's not a lymphatic condition.
  • Lipedema rarely occurs in Asia.
  • Lipedema has not made ICD-10 recognition yet, because it's difficult to fit their criteria. For starters, naming the cause is required, which is unknown at this point.
  • How come the feet are never affected? Feet barely have fat cells.
  • Fat acts like a sponge and attracts water. The more fat, the more fluid you carry, but that does not make it (lipo)lymphedema per se.

    He also touched upon a few liposuction myths:
  • There is no such thing as sucking away ‘all fat’. There will always be (some) fat staying behind, which is as it should be.
  • Sucking out only bad or the wrong fat cells is not feasable. That would require screening one fat cell at a time to determine which could stay and which could be sucked.

Now, if I can nag about something: it doesn't say which diet is recommended. This is something they want to leave with the 'experts', dieticians. And we all know what most dieticians come up with: high carb, low fat. Plus, most are oblivious to lipedema. Hence the quotation marks.

I picked up something interesting regarding exercise. Dr. Damstra recommended Graded Activity (GA). GA suggests an exercise program that gradually becomes more demanding. You do the load as agreed with your therapist/coach. So you push yourself on a bad day and don't overdo it on a good day. Personally I haven’t been making progress in ages. I don’t go to the gym on a bad day and hit it hard on a good day, but this leaves me ‘only’ stable. So this is definately something I intend to apply.

Applying LPG

The second lecture was about LPG skin care using the LPG Cellu M6 KM machine. I’m naming the machine, because it was said this one was more powerful/effective than earlier models. It was tested on only 10 ladies, but it was interesting to learn a therapist thought it safe and possibly beneficial to try. 9 out of 10 reported positive effects like less pain and a less heavy sensation in the leg. The tenth lady was the only one at stage 3 and had to give up because treatments were too painful.

It was a small group and only 10 treatments, but I did want to give this a mention, because the question whether you can do this safely comes up a lot on forums. It’s a bit early, perhaps, to take a stand on that question, but it’s good to know it’s on the radar somewhere. She did warn about areas with varicose veins. She said it was best to work around it. Hopefully more tests can be done.