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.
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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

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.

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.

Epsom salt to detox

By Ashley Buckwalter-Mack, one of our new Lipese Challenge members on Facebook

I would like to share with you my experience experimenting with Epsom salt for detoxifying purposes. I was looking for ways to detox my system and I came across Epsom salt. After my first soak I could really tell a difference. There was a ton of dead skin in the bottom of the tub, I was extremely relaxed, my aches were gone and I slept better too! So I thought I would give it another try two days later and this is what happened. I weighed myself before getting in to the tub.  When I was getting out of the tub my body felt extremely heavy so I thought I would weigh myself again, thinking the number would be higher. To my amazement,  the number was down by 5lbs. I stepped off of the scale and back on again three more times to make sure it was reading correctly. Sure enough I was 5lbs lighter! I then turned to the web for answers. I found an article in regards to Dr. OZ stating that Epsom salt can help you lose weight!     

For those of you who do not know the benefits of using Epsom salt, here are just a few: Eases stress and relaxes your body, relieves pain and muscle cramps, helps muscles and nerves function properly, helps prevent hardening of arteries and blood clots, makes insulin more effective, relieves constipation, replaces enzymes, and last but not least, it sucks the toxins right out of you. To experience the numerous health benefits of Epsom salt, take relaxing, stress-relieving Epsom salt baths three times weekly by adding 2 cups Epsom Salt to a warm bath and soaking for at least 20 minutes. For the added benefit of moisturizing your skin, add 1/2 cup olive oil or 10 drops of essential oils. Try to rest for about two hours afterwards.  If you have arthritic joints, move them as much as possible after an Epsom salt bath to prevent congestion in the joints.  Make sure to drink a glass of water before you get in to the tub, and again when you get out, this keeps your body hydrated.

One more thing. Be very careful when getting out of tub as the salts can make you dizzy and your body will feel heavy. Epsom salts can be used for many other things, not just baths. Here is an article that I have found that will explain some other uses as well.

Now, on to my discovery of essential oils! I will just say that essential oils can be extremely beneficiary to your health.  They can be added to your bath water, added topically, or even be ingested. Just make sure to read your label carefully for any warnings or directions before using.  Here is a link to some information regarding the main essential oils and the benefits they can provide.