MLD Therapy and Wrapping - Part Two

By Christina Routon

I felt strange during my first treatment visit to Jodi, my therapist. It had nothing to do with her - it was all the stuff in my head. I was wearing a skirt, I felt self-conscious of how I looked, and I just didn't feel myself. I never really got over those feelings, but I learned to deal with them.

Remember - feelings aren't reality.

Jodi made me feel as comfortable as possible. As she massaged my legs, we talked about our families, our jobs, what we were doing for Halloween. I asked her questions about lipedema and the therapy. Of course, we had no idea what progress would be made, if any. I felt relaxed and completely at ease. She confirmed the lump on the side of my ankle was a lipoma. I never knew it had a name. It was just a lump that would sometimes swell if I'd been on my feet most of the day.

The massage lasted about forty-five minutes. I wore a loose pair of capri-length workout pants under my skirt. I was used to wearing hose couldn't go out without wearing something over my legs. I took them off and Jodi proceeded to wrap my legs for the first time.

She started by applying lotion. The room was chilly and the cream was cold. She smoothed it into my skin, then measured and cut a pair of knit stockings. These aren't actual stockings with silicone at the top to hold them up. They're basically a tube of knitted material that she cut to size. She slipped it over my leg and I helped pull it up to the thigh.

The next step was cotton padding. The cotton is between the stockings and the wraps so they won't harm the skin. So far so good. My legs grew warmer as they were covered.

I ended up with five wraps on each leg. I was wrapped from foot to thigh, the smallest wrap on my foot and the largest over my thigh. Jodi walked me through the wrapping procedure so I could fix them myself if they came loose and so that my husband could help me when he was home.

The wraps were tight, but not painful. Many women with lipedema have debilitating pain in their legs. It's so bad they can't bear to be touched. I'm thankful I don't have pain. My legs may ache at the end of the day, but they're not so painful I can't be touched.

When the wraps were finished I pulled my capri-length sweats over them, then straightened my skirt. Jodi helped me put on the shoes I'd brought, a pair of hospital boot type sandals with velcro fasteners. After the first day, I ended up mostly wearing my tennis shoes and kept the hospital sandals for home. I wore the wraps for two days, taking sponge baths and sleeping in them.

I spend the first week hating the wraps. The bandages around the thighs would slip, along with the stocking, and the material would bunch up around my knee. One day the right leg would fall, the next it would be the left. I felt as if I was in the restroom at work every few minutes, redoing the wraps. I sat at my desk as much as possible as moving around made them fall faster. By the second week of wrapping, Jodi cut two pieces of stretchy material called Tubi-Grip (I called it Turbo Grip!) to place around the top of the wraps. The Tubi-Grip helped everything stay up the way it was supposed to and I spent less time fixing falling wraps. I wished she'd given me some earlier.

I noticed a change in how my legs felt by the third day when I removed them to shower. The skin was much softer to the touch, most likely due to the lotion used and the heat generated by the wraps. I enjoyed how my skin felt so much I've continued using a moisturizing lotion on my legs daily.

I had an issue with my legs itching where the wraps bunched around my knee. Jodi used hydrocortisone cream around my knees to help combat the itching.

We measured after the first week. By then I was asking her about getting my compression hose. I was more than ready to stop wearing the wraps, and it had only been a week. We discussed waiting at least one more week to see how the measurements worked out.

The first week's results were amazing! Based on her measurements, I lost almost two liters of fluid in one week. My calves didn't seem to have changed much visually, but the measurements showed they did  lower. My skin was feeling better and there was a visible difference in my upper thighs.

Jodi compared my loss to a two-liter soda bottle, three-quarters full. I agreed to wait one more week before ordering the hose and we set up our next set of appointments.

Next week - Final Measurements, Getting the Hose, Dealing with Work, the Public, and Thoughts in my Head

Healing in Community

by Maggie McCarey

Terms; Contemporary medicine applies health science, biomedical research, and medical technology to diagnose and treat injury and disease, typically through medication or surgery, but also through therapies as diverse as psychotherapy, external splints & traction, prostheses, biologics, ionizing radiation, etc. (http://en.wikipedia.org/wiki/Medicine)

Herbal medicine (or "herbalism") is the study and use of medicinal properties of plants. (http://en.wikipedia.org/wiki/Herbalism)

HEALING IN COMMUNITY

Many of you have read our book Lipedema: Help, Hope, and Healing and know that in 1992, while I was on sabbatical, my immune system went through an almost irreversible shut down. The medical profession could not find the root cause of this illness: I was tested for MS, Lupus, parasites, allergies, metal poisoning, Lyme’s disease, Lou Gehrig’s disease and so on. Each test came back negative.  I lost sixty pounds in a few months.  Doctors gave up on me and I was left to lay on a porch by day and to sit in a chair by night, unable to sleep more than an hour before jolting awake and in racing gear for the next 23 hours.

Because modern medicine failed me, I was led back to the teachings of my early youth, my grandparents’ penchant to heal their own, and in the present to an Amish healer who first treated me with herbs and then taught me how to use them.  At that time, I began online course work at The Herbal Healer Academy and studied every herb book I could get my hands on.  When I finally healed from what I now know to be an inflammatory cascade brought about by lipedema, I was also left with an interesting gift.  One afternoon, my husband said, “I have a blinding headache.”

I said, “I can fix it,” and for some inexplicable reason, I held my hand over his head until I felt his pain, and I drew it out into my hand.  His headache was gone.

I practiced then on children when I substituted at the local school and on neighbors who sought my help.  One evening after hours, frightened parents brought their son with an infected spider bite to me. I applied a poultice and the redness began to disappear within seconds.  His father had been suffering from a sinus infection for months.  He had recently gone to a specialist who put him on a high-powered antibiotic and pain medication and scheduled him for endoscopic sinus surgery three weeks hence.  Within a few days after the spider bite, the father retuned to my home begging me to relieve his pain before he took his own life.  I brought him to my sink and instructed him on how to use a netti pot.  I filled the pot with warm salt water and a bit of colloidal silver.  He did as I instructed and instantly massive amounts of mucus left him.  Within seconds, his pain was completely gone.

I could get side-tracked describing the numbers of times people have been cured in the most simple of ways like this but the point of the above story is to illustrate the difference between the two healing methods.  I am not interested in debating which method is better.  The world is consumed with competition.  Obviously, accessing both disciplines to achieve optimum health would be an ideal world. Unfortunately, in this imperfect world, that isn’t what happens.  Like placating divorced parents, you are sort of forced to choose between them.

I would like to suggest and emphasize in the writing of this blog that we are all genetically programmed to be healers.  Our bodies are their own healers.  Good doctors will tell you that healthy people die sometimes over the slightest invasion to their bodies while others who should be dead many times over survive one illness after another.  The latter carry the memory of how to heal themselves in their DNA.

Dr. John McKnight, professor emeritus from Northwestern University, is a social scientist and community development expert.  He argues for the community to be the most developmental aspect of society.  He says:  As institutions gain power, communities lose their potency and the consent of community is replaced by the control of systems; the care of community is replaced by the service of systems; the citizens of community are replaced by the clients and consumer of institutional products. (http://www.cpn.org/topics/community/regenerating.html)

           

McKnight says the more we institutionalize our humanity the less we remember how to be human. For example, people once knew how to offer condolences to others when a loved one dies.  Now we leave that uniquely human compassion to counselors train in grief.  We no longer feel adequate to express grief properly.

McKnight gives the most powerful example of how seven Chicago women banned together to save breast-feeding as a human endeavor.  The almost single-handed institutionalizing of bottle-feeding by the medical profession became a reality when Dr. Spock promoted it over breast-feeding in the 1940’s. Doctors convinced mothers that breast-feeding was unhygienic. Mothers were often coerced into taking shots to dry their milk up within hours of delivery. Somehow, the medical community was so powerful in its capacity to minimize humanity’s collective wisdom, it actually convinced us that mothers were jeopardizing their children’s health with their own milk. The Le Leche League was founded in 1955 when one of its seven members could find no one who could teach her to breastfeed her child, one year before breast-feeding in America dipped to its lowest level of 20% in 1956.  Since then, it has taken an international movement to keep breast-feeding a part of being human.

           

In America, there were as many as 98,000 preventable hospital deaths recorded last year. In England, there were 558 cases where doctors recorded that a patient had died in a state of severe dehydration in hospitals; 3 died of starvation; 78 hospital and 39 care home patients were killed by bedsores, 21,696 were recorded as suffering from septicemia when they died, a condition which experts say is most often associated with infected wounds. (www.telegraph.co.uk/health/healthnews/9591814/Patients-starve-and-die-of-thirst-on-hospital-wards)

Even so, we are programmed to believe that practicing herbal medicine is far more dangerous than traditional medicine, even fatal. Do not try to confuse us with facts! The American Association of Poison Control Centers' report utilized the data from 60 Poison Control Centers. They handled 2,479,355 human poison exposures of all sorts. Analgesics, all Big Pharma products, accounted for 11.7% of all poisonings, the largest percentage, followed by cosmetics/personal care products at 7.7%, household cleaners at 7.4%, and sedatives/hypnotics/antipsychotics, another Big Pharma group of products, at 5.8%.The category Dietary Supplements/Herbals/Homeopathic/Amino Acids, which starts on page 1138 of the report, indicated a single death, but even that one can be discounted because it's listed as "Unknown Dietary Supplements or Homeopathic Agents". There wasn't a single death from any product in this category

Vitamins, which start on page 1146, provided the same results—not a single death. However, pharmaceuticals were the cause of 497 deaths, out of a total number of 718 from all causes of poisoning deaths. Pharmaceuticals were responsible for … 69.2% of all poisoning deaths in the United States (in 2009) http://www.gaia-health.com/articles401/000412-poison-control-report-herb-vitamin-deaths.shtml

Now, I will eventually get to lipedema and the herbs that work for those of us who have lipedema and why they work, but we must begin with the war between healers and doctors and how that came to be.  We will have to ask ourselves how we got to a place where we line up for shots and drugs with mile-long adverse reaction warnings, and savage surgeries that serve as starvation aids when we cannot properly starve ourselves; and how as members of a community we stopped knowing how to care for ourselves and each other.  Otherwise, we will never find the courage to seek the path less taken, that is, to exercise our ability to lay hands on each other to take away pain or to accept alternative healing for our lipedema. 

           

All of us with lipedema know a lot about pain medication and we know that it doesn’t even begin to touch our pain—and we know that all of it has egregious side effects, including addiction.  Yet, we take it.  Let me leave you today with one small counterpoint to what you may not know to be true about pain relief as a way to help you see how institutionalized beliefs, rather than knowledge, lead us to irrational conclusions regarding our own health.

It is now generally proved that massage is the best pain reliever known to humanity.

"Basically we have found massage to be effective in chronic pain syndromes in arthritis and diabetes; in depressive disorders such as ones that autoimmune disorders -- HIV-associated diseases, too.… We    have looked at the A-to-Z of medical conditions, and we have not found a  single condition massage has not been effective for.”

Can we change towards that healthy news about the power of laying on of hands?

           

When we discuss herbs and alternative healing we are really discussing what it means to remember being human in community with other human beings who both heal and are healed by one other.  How many of you who have found your way to a lipedema forum cannot agree that simply being with others who care about your health has made a greater change for the better than most of your doctor visits.

 

Next blog on herbs:  How hundreds of thousands of herbalists were killed in conjunction with the invention of modern medicine.

 

 

My Experience - MLD (Manual Lymph Drainage) and Compression Therapy

By Christina Routon

Upon discovering I had lipedema I began researching treatment options. Even though most compression treatment is for lymphadema, most sources I found also recommended it for lipedema. It was worth a shot, and I discovered my local hospital had a lymphadema clinic attached.

My endocrinologist agreed to refer me to the clinic and I set up my consultation for the beginning of October.

During the consultation, I was uncomfortable at first as no one had seen my legs except my husband and me for years. The therapist was understanding and supportive and completely non-judgmental. She took measurements and photos of my legs so we could compare when therapy was over. We set up appointments for the following week, discussed some things I would need during therapy and discussed the cost and insurance coverage. She also confirmed my diagnosis and stated I have Stage One lipedema (although I think I may be more like Stage 1 1/2 or Stage 2).

Changes in Lifestyle and Dress

The biggest change I had to made was in my clothing choices, especially at work. I typically wore slacks. I hadn't worn a dress or skirt in years. With compression bandages from foot to thigh, there was no way I would be able to fit into my slacks. I'd also just bought a new pair of heeled sandals for work. Nope, wouldn't be able to wear them either. So that weekend I headed to my local thrift store where I bought three long skirts and a few tops.

Well, I had to have tops to match the skirts, right? :)

Fears and Concerns

I was concerned about wearing the wraps. I'd just gotten used to myself after a sixty pound weight loss and was feeling pretty good in my body. Now I was told in order to have the therapy I would have to wear skirts and tennis shoes or some type of medical boot since my feet would be wrapped. I was concerned about being out in public and feeling judged in some way. I do have issues with judgement, with wanting to be accepted by others. Since I'd finally lost a lot of weight I was getting compliments and comments, and it felt good. I didn't want to lose any of that. But I knew my health was more important and it would be temporary - about a month until I was measured for compression hose. I'm still working through the judgement issues. It takes time to work through belief systems, words and feelings from the past.

Insurance, Cost, Time

Compression therapy and MLD is expensive and time consuming. You can find a therapist to do the MLD, but most are out-of-pocket expenses and aren't covered by insurance. By using a therapist at the lymphadema clinic, the therapy was considered to be occupational therapy.

If you have insurance, read through your policy. My policy allows up to 30 visits a year for various types of therapy, including occupational therapy. If the policy isn't clear, ask your insurance company if the compression bandages are considered to be durable medical equipment (DME). If so, they may cover a portion of the cost of the bandages. Since I'm bandaged from foot to thigh, I have five compression wraps on each leg. The first visit was $200 with the cost of the wraps. Each successive visit has been $50-$60.

My job provides a flexible spending account as a benefit. This is money pre-taxed for medical use. At the beginning of my plan year, I can choose how much money to put into my flexible account. That money is immediately available for me to use for medical expenses. The amount I've elected is then deducted from each paycheck, pre-tax, and is paid back in this way over the year. The good part about having this account is I was able to use it to pay for the wraps and the visits.

When I started therapy, I went three days a week for two weeks. They do like to start out daily, but I needed to keep the cost down as well as arrange for the time to be gone from work. As therapy progressed and I learned to wrap myself, I was able to lower my visit time to once a week. The visits last about two hours and I'm at work by ten a.m. I was eligible for FMLA (Family Medical Leave Act), so I spoke to my supervisor regarding the appointments and what was needed, the time frame, and how my manner of dress would change, such as the shoes I would have to wear. I didn't have any issues with filing for FMLA, and was granted the time for the appointments. I use my accrued sick time to cover the two hours I'm not at work.

Part 2 coming Monday, 11/19