Inflammation Flares Part 2

by Maggie McCarey

LIFE CHOICES THAT STOP INFLAMMATORY FLARES

NUMBER ONE

No processed sugar.

Not even.  Nope.  Nada on a regular basis.  Okay, once in a blue moon.

NUMBER TW0

Drink half your weight in ounces of pure water every day

NUMBER THREE

Have a plan and necessary meds or herbs to act quickly.

The good news is that when it first appears like the cavalry, you can’t mistake it for something else.

Learn how to act quickly to reduce inflammation when you experience an inflammatory trigger like a fall or a shock or an insect bite.  Think of all the home remedies and over the counters you know about. My daughter, Catia, swears by a penny taped on a bee sting remedy because it works for her.  Treating my daughter Stef’s no-see-ums poisoned inflamed upper body a few years ago was not so easy and far more urgent.  Most people get a tiny red mark at the site of a bite.  Stef went into full inflammatory flare within an hour. The inflammation spread quickly throughout her left arm, her upper body, even her eyelids. She knew that the inflammation was caused by histamine, a symptom-causing chemical released by her immune system during an allergic reaction and that she needed a strong anti-histamine to subdue her oh so helpful immune system. She took Zyrtec which reduced the swelling, heat, redness, and pain in her arm and the healing process began.  Lipese need a plan.

Herbs in Ointments, Tinctures, Balms and Teas

One of our lipese on a recent forum shared that her legs ached from humidity and too much standing so she massaged arnica cream on them and the pain improved. Why?  Because arnica root is an anti-inflammatory herb. It’s believed that the plant contains derivatives of thymol, which seems to have anti-inflammatory effects. Herbs are often anti-inflammatory.  That’s how they work.  They reduce chronic swelling.

A small list of Anti-inflammatory Herbs

Turmeric, ginger, guggul, neem, boswellin, holy basil, bromelain, aswagandha, blue vervain, butcher’s broom, calendula (marigold), cat's claw, chamomile, fennel, queen of the meadow, skull-cap, buplerium root, dandelion, rutin, and my favorites: Rosemary, Lavender, Lemon Balm, Raspberry Leaf. 

If you ask me, these four herbs should be in every sauce, gluten free cupcake, meat seasoning, and toothpaste ever made.  I have seen rosemary reverse heart and lung issues. I make burns literally disappear with lavender because a burn makes your skin acidic and lavender turns it back to alkaline. I baked rosemary so often on chicken, my grandson once said to me:  How come you always make me eat these sticks on my food?” An herbalist friend told me a week ago: “Every woman on the planet should take raspberry leaf on a permanent basis.” Lemon balm tea can change a horrid, back-cracking monthly into a pain-free event. 

     

All inflammatory diseases are about how we nourish our bodies. The modern world nourishes with chemicals.  Herbs that detox us from chemicals are essential to recovery.  You can cook with herbs, bathe in them, shampoo your hair with them, and drink them in teas.  They come in gels, oils, and balms. You could literally be healing yourself with  herbs that also improve skin tone. And, they are inexpensive.

 NUMBER FOUR 

Drink Tea Daily to Reduce Chronic Inflammation

Green, White, Oolong, Black is the proper order of most to least effective anti-inflammatory tea.

All teas are not the same. White, green, oolong, and black refer to the leaf at time of harvest and the oxidation process of each tea. Pekoe, for example is a white tea because it is harvested with unopened baby buds, slightly sun baked, and lightly oxidized (bruised).  White is the purest of the teas and I believe, based on aging as deterioration, one of the two best to drink. Green tea is exactly what it means.  The tea plant is harvested when the leaves are at their greenest and at the peak of fullness and medicinal strength.  Green tea is generally not oxidized. It is almost always considered the healthiest of teas with Dr. Mercola, a lone dissenting voice, who is concerned with high levels of fluoride present in green tea.

      

Oolong is tea that is picked while the tea is brownish green, placed in the sun for a short time and then oxidized. Darjeeling is perhaps the best-known oolong tea. Oolong and almond tea is one of my favorite teas. Finally, black tea is made from older brown-to-dead leaves and it is most oxidized. English Breakfast is a black tea blend of usually Assam, Ceylon and Kenyan teas. Earl Gray is a black tea with oil of bergamot added.  Rooibos, South African tea, is technically a member of the legume family and extremely high in flavinoids and antioxidants. It is a fabulous anti-inflammatory.  Any tea is better than no tea, but regarding anti-inflammatory properties, white and green are preferred.

     

A caution: If you open up the bag of a tea that is labeled pure, you will find hard wood like dried shards of tea that can be mixed with anything, including weeds along the road.  When the bag sits in hot water, the mixture inside barely swells to half the size of the bag.  It is probably better that you not drink tea at all than to drink this “pure” potpourri of tea and sprayed weeds.  On the other hand, a good organic tea looks like a rolled leaf, and when placed in a tea strainer will swell four times its size.  Its color will be vibrant, its touch moving from soft white to twiggy black.  This is the tea you want to develop a habit of drinking for the rest of your life.

NUMBER FIVE

A good strong cup of brew? Not.

I love my coffee.  I will die drinking coffee like some really old ladies keep smoking.  But I have to be honest. Yes, coffee has the highest level of antioxidants in the universe (for the first 15 minutes after it is brewed), but it has other issues with recognizable words we coffee-lovers don’t want to hear.  Be brave, dear breve misto venti extra light, extra hot, no sugar Starbuck’s gal.  Read on:

           

“The most potent ingredient in it….is caffeine. This compound is -a -known stimulant. Ingesting stimulants, like caffeine, cause an adrenal response in the body. This response increases cortisol which raises blood pressure and heart rate, as well as interferes with other hormone production in the body. People with elevated cortisol levels produce less DHEA, testosterone, estrogen, progesterone and other hormones that give the body balance at both physical and mental levels. Excess cortisol can suppress the immune system as well. “

Cortisol is that hard to lose belly fat. Sigh.  And it hardens our capillaries.  Diddleydang.

            http://renegadehealth.com/blog/2011/01/31/coffee-does-have-antioxidants

NUMBER SIX

 Mother’s Breath

Continually Exercise Your God Gene

When I went through MDL, I had a wonderful therapist who could tell me when my lymphatic system released and drained.  She could not, however, apply any technique to make it happen.  Sometime during the first few sessions, I realized I was gripping the table like a life raft, my teeth clinched and my breath shallow.  As a part of allowing God rather than fear to be present in me, I began to do the Mother’s breath. The moment I started breathing properly, she jumped back and said, “What did you do?  Your lymph system just turned on like a faucet.”

     

This was great confirmation that I was actually changing my body with this ancient breathing technique.  I explained to her that I often breathe a prayer that I learned from the Sufi’s in Alaska.  They believed this to be the perfect God/child of God breathing pattern.  Seven count in.  Pause for one count.  Seven count out.  Pause one count. Seven count in, etc; for several minutes.  With the 7-1-7-1 cycle, I was encouraged to find seven-syllable mantras that I believe.  In Christ all things are made whole, and I am the oneness of God became the two mantras that I choose between.

     

Now in any situation that I attempt to control my external world out of fear, I do the Mother’s Breath. Because people with lipedema often forget how, and, no, it is not caused by a crushing weight on our chests from obesity, we need to be taught to breathe. The Mother’s breath is one that I use for myself and in healing sessions with others.

     

Every MLD session after that, my therapist said, “ Let me try first. Dang. Okay do that breathing thing you do.”  I breathed my mantra and 7 count.  “There goes the faucet,” she would laugh.

     

So often the lipese bear the weight of others who are also ego-damaged and looking for someone to target, or we take things to heart more than others, or we find out early in life being helpful keeps us safe. But after awhile our lives are so stressful that if we then come upon a real life change, or even a common stress, a worried day over a child, or a late credit card payment, bald tires, a missed appointment, etc. The old legs get tight, indicating that we have unconsciously called for help where we hold stress--in our legs.  That feeling of tightness in your legs? Check it out.  If they are suddenly feeling heavy use the Mother’s Breath.  When you do, the lymph system flows, channels open, toxins  release and you are the Oneness of God in the process of being healed.

MLD Therapy and Wrapping - Part Three

By Christina Routon

After about three weeks of wrapping I was ready to be back in my regular clothes, so Jodi set up an appointment for me to be measured at a local medical supplies company. I met Carey one morning before heading to work. I knew I wanted regular pantyhose, not thigh highs or knee highs.

It was uncomfortable being measured by a man instead of a woman. I kept telling myself it was for the greater good and I'd be back in my regular clothes soon.

I wore my wraps to the appointment and removed them there. This way we could be sure my legs were as small as possible. I wore a pair of loose fitting pajama pants over the wraps. Carey measured the same way Jodi did - using a small tape measure in various increments up and down my leg. We discussed the sizing and type and the difference between flat knit and circular knit. At the time, I remembered I'd read something about lipedema patients needing flat knit but I couldn't remember why. The flat knit seemed very thick, bulky and hot, so I chose to go with circular knit.

A few days later Carey had the cost - $600 for a pair of custom made hose!

There was no way I'd be able to pay that, especially since I wasn't sure how much insurance would pay, if any. So my husband and I discussed various options - getting knee highs and wearing them with a pair of store-bought capri length body shaper, waiting until spring and seeing how much our income refund would be or see if there was an off-the-rack size that would fit me, even if it wasn't exact.

I spoke to Carey about those options and he was able to find an off-the-rack pair of hose that fit within my measurement range. My cost was just over $100, which I paid using my Flexible Benefit card.

After wearing the hose a few days, I realized WHY lipedema patients need flat knit. The circular knit hose will bunch up around the ankle, the knee, and any other place you have lumps and bumps. The flat knit is supposed to do just that - lay flat, and not bit into the skin. My hose tend to pool around the ankle, just under the ring of fat. I'm constantly adjusting them during the day. Every night I check my ankles to make sure they didn't actually cut into the skin - sometimes it feels that way - but to be safe I put triple antibiotic cream around my ankles every night.

Mentally, dealing with the wraps was difficult. I found it hard to go out in public. No one said anything to me at work, even though I know some had to be curious as to why I walked around in skirts and tennis shoes with bandages on my legs. It's difficult to be in that headspace where you think people are talking about you or saying something about you. As an overweight person and now knowing I have lipedema, I seem to be in this place a lot, which is why it's difficult for me to wear dresses and skirts. Not physically difficult, but mentally, because what repeats inside my head is "They're looking at your legs," over and over like a broken record.

Physically, the wraps were a pain because they would fall and slip during the day. I couldn't take the stairs because it was difficult to walk up and down in the bandages. They would loosen and start to fall as I climbed. There were times they seemed very tight, especially around my calves, and I couldn't wait to take them off or loosen them even a little. Keeping them on difficult at times. I enjoyed my freedom from the wraps when I washed them and showered.

I've had my hose now for about two to three weeks and I'm still getting used to them. I have to put them on with rubber gloves. This helps get a good grip as well as making sure nothing tears the fabric. Pulling them over my ankles and calves is the hardest part - and it hurts the most. Once I get them over my knees it's a lot easier. The material is still pinching around my ankles. I tried wrapping some cotton and taping it around my ankles first to give some cushion, but I couldn't get the cotton to stay in place as I pulled the hose over my foot and ankle.

I had my final visit with Jodi yesterday and received my final measurements.

From October 7 - November 28:

Lost 1 inch from hips
Lost 1 inch from thighs
Lost 1/2 inch from calves
Lost 4 pounds of scale weight

Doesn't sound like a lot, but when you look at fluid loss, it's a lot.

According to Jodi, I lost two liters of fluid from each leg during October / November. That's the equivalent of two 2-liter soda bottles.

My slacks fit better and my skin feels better. The ring of fat around my ankle is smaller. I can see a difference in my thighs more than my calves, although my husband says he can see a difference.

Now that the therapy is done, would I do it again? Yes, I would. I do believe I gained some ground in stabilizing this disorder. I dealt with being uncomfortable, physically and mentally, because I believed it would help me in the long run.

I plan to buy a pair of flat knit hose as well so that I can alternate between the two pair. I don't know how I'll feel about them come summer, and I don't like the pinching, but if it means staying stable I'll continue wearing them, and I do believe they're helping.

Now that the wrapping is out of the way, my next short-term goal is to start saving for surgery, continue my wheat-free / sugar-free diet (I may go grain free next year), continue exercising three days a week and become stronger and healthier as I prepare for liposuction within the next two-three years. All that sounds well and good, but my ultimate goal for 2013 purely superficial - I want to buy a great pair of wide calf boots and start wearing dresses and skirts again.

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

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