MS Facts and Your Support Team

I am going to aim this part of my discussion primarily at MSers. (I am working on something for other folks, too.)

The Winter 2012-13 edition of Momentum magazine was quite interesting. MSers with relapsing-remitting MS (RRMS) are always waiting for the other shoe to drop.We expect our MS to become secondary-progressive MS (SPMS) any day. But within the first 10 years of RRMS, only about 50% will become progressive. (pg.15) Maybe you knew that, but it’s better odds than I had hoped. When I was first diagnosed, my neurologist’s responses led me to think I had SPMS already. But then he put me on a disease modifying treatment (DMT), Copaxone, and through reading I discovered that that meant I still had RRMS. It matters to us because treatments work better on RRMS. Once MS becomes progressive, there are fewer treatments available. There are clinical trials going on for those with progressive forms of MS. Don’t hesitate to get into one. Oftentimes, a trial will allow participation from people all across the country. Ask your neurologist, or email or call the people running the trial. http://clinicaltrials.gov/ct2/results?term=progressive+multiple+sclerosis&Search=Search

If you’re just getting into finding out what kind of support there is for you, there are a lot of medical professionals to get on your team. (pg. 17-18) Get referrals to them from your primary care physician (PCP) when needed. Don’t hesitate to do so. If you can’t afford these folks, look for a hospital that is a non-profit, often associated with a religion or a university. On their website, choose the page about patient resources, and look for patient assistance. Or, try financial assistance. They often have programs that will let you see all the doctors in their group for free or at a significant discount. You’d be surprised how useful some of them can be. Here’s a short list to get you started:

·         Primary care physician (PCP)

·          

o   Helps you to coordinate it all, gets you referrals, and can help fill out paperwork to get free or no cost treatment when you are underinsured, uninsured or just broke.

·         Neurologist (neuro)

·          

o   Your neuro diagnoses the MS and prescribes DMTs and other drugs to help you manage it. She or he can also help you in many of the same ways as your PCP, depending on the individual doctor.

    

·         Physical therapist (PT)

·          

o   Not only can she help you build strength and balance, but she can also show you how to make choices that minimize fatigue.

·         Occupational Therapist (OT)

·          

o   Your OT can help you with upper body strength, and he can also show you how to use tools that help you act as independently as possible. Mine showed me some neat tools for getting my shoes on and off.

    

·         Medical psychologist

·          

o   Dealing with MS means meeting new challenges, and coping with overwhelming emotions. I have been to one to talk about how angry I am with the medical system for not getting my diagnosis right for many years. The sooner you get the MS diagnosed, the more you can keep it in check.

   

·         Social worker

·          

o   She can help you find resources you didn’t know you qualified for from Medicaid/Medicare to food, people who can help you at home, and more. Check with the Social Security Office and your county or city health department and county offices.

   

·         Speech-language pathologist

·          

o   If MS makes it harder to talk or to swallow, then this is the person who can help you. Sometimes, the OT or PT will be the right one for this task. Ask!

   

·         Vocational counselor

·          

o   Here, it’s a county function. There is an office for disabled folks where they help you to retool yourself and market yourself for work you can do.

·         Urologist

·          

o   If you are having problems with your urinary tract, this doctor should be able to help you with a special PT, medications, or exercises.

·         Gastroenterologist        

·          

o   If MS has affected your gut, a gastroenterologist can help with ideas or medications.

   

·         Anesthesiologist or Pain management specialist

·          

o   A pain management specialist can be really important. Your PCP and neuro can help some with pain, but sometimes you need someone with more depth.

   

·         Ophthalmologist

·          

o   For years, my eyes have had auras, twinges, and small stabbing pains. I put it all down to migraines or allergies. Turns out some of that could be optic neuritis or other vision problems caused by MS. Some folks have blurred or double vision, or get vertigo. A good ophthalmologist is important to have.

·         National Multiple Sclerosis Society (NMSS)

·          

o   NMSS can often refer you to doctors who have done a good job for MSers in your area. They have a program called the MS Navigators who are people trained to answer many kinds of questions. Find your local chapter on the NMSS website and get a phone number for the MS Navigator. You can read about what is available here: http://www.nationalmssociety.org/chapters/vab/programs--services/learn-more-about-ms/ms-navigator/index.aspx.

   

·         A Support Group

·          

o   There’s nothing like a good support group. You can join several online and see what fits you well. The group I administer gives support as people go through life with their illnesses, but it also does a lot of research, trying to figure out how to help people lessen their pain and increase their function, and considering various treatments and how they work or don’t work, and whether the new ones coming up might have potential for us. Other groups might focus on emotions or diet or other areas.

o   The NMSS has support groups that meet in person, and if there isn’t one near you, they might train you to get one going in your neck of the wood. Think about it! If there are at least 300,00 MSers in the US, then there are at least about 60,000 in your state. Some of them have to live near you. (With something more widespread like fibromyalgia, there are over 6 million in the US! There will be someone near you!)

You are never alone!

My, Oh, My! Myelin!

A Brief Introduction to Myelin

Multiple sclerosis (MS) attacks the fatty protective coating of nerve fibers in the central nervous system called myelin. Even people without MS experience myelin decay as young as 39 years old. The first sign of myelin breaking down is a loss of speed of reflexes, for most people it’s not noticeable until they reach middle age or beyond. The next evidence of myelin breakdown is that balance can falter, shaking can begin, and coordination and memory begin to work more poorly.

Myelin plays a crucial role in the ability to function and remember information, and myelin is attacked in more diseases than just multiple sclerosis. For example, myelin is a key element of Guillan-Barre syndrome when a minor infection triggers the body attacking itself, causing muscle weakness and paralysis, and also in transverse myelitis, when an inflammation of the spinal cord damages myelin there. There are several organizations founded to fund myelin research, looking for a cure for demyelinating disease. The Myelin Repair Foundation encourages collaboration between scientists in separate labs. The goal of the group is to discover how to repair myelin, often through drugs that can result in quicker, more effective treatment of multiple sclerosis in order to end the suffering of the disease. The work may lead to therapies that will aid victims of other diseases including Alzheimer’s, Parkinson’s, and ALS. The Foundation hopes to launch clinical trials in 2014, and to provide a therapeutic approach to repairing myelin by 2019. http://www.myelinrepair.org/

Another such organization is The Myelin Project. Founded in 1989, the organization funds research grants. In 2001, the Project funded the transplantation of myelin-forming cells into the brain of someone with multiple sclerosis. The procedure did not trigger myelin production or symptomatic change. http://www.myelin.org/home.html

How do you help your body fight myelin decay? There are a lot of supplements that could help. One thing emphasized on some sites is that without sufficient vitamin C, your body can’t move nutrients to the brain. If you do decide to take a vitamin C supplement, make sure it is buffered, so it doesn’t make you more acidic. We’ll talk about more things that can aid in growing new myelin in the next blog instalment. 

Finding a Path to Sleep

Common to many with illness is the inability to fall asleep. Many would rather not add one more prescription to the medicines taken. I think we are fighting a lot but it still might help. Self hypnosis may be a way to relax and get some rest, and perhaps sleep. I am not a hypnotist or psychologist. Check in with yours for some good ideas. Meanwhile, here's one approach to it that I've used before.

First follow these two steps  to calm your mind. The first idea is to stimulate both sides of the brain and stop the brain from focusing on stress. To do so, try tossing a ball or bean bag gently back and forth from hand to hand for several minutes. As you do so, your stress should drop down. Toss a few minutes until your stress drops low.

For the second step, lie down comfortably in bed and do the following  visual exercise. Stare at a spot on the ceiling, focusing, then widen your gaze out in all directions while still staring. This gets you to focus outside yourself.||

Relax. Close your eyes and breathe gently, slowly deepening your breath as you relax. Slowly focus on your toes and let the muscles in them relax. Then, relax your feet, your ankles, and so on, from your feet to the top of your head. Now, visualize yourself floating on soft, gentle cloud, floating above a mountain. The cloud is comfortable. You are safe. You float down the mountain on the cloud, hearing the sound of birds. You hear the sound of a waterfall and follow the rippling stream bed as you float down the mountain. Your breathing is deep and slow, as you float on the cozy cloud. Slowly down the mountain and along the stream bed you float, listening to birds and flowing water until you come to the stream flowing into the sea. You drift off to sleep, cradled by the soft, fluffy cloud.

My Heroes

I admin a private support group on Facebook for folks coping with multiple sclerosis (MS) and other chronic diseases. (Private means you can’t find it with a search engine, so everything we say stays in the group and not seen by the public. You can only join by invitation of a member.) There are over 400 of us now. Most have MS along with a myriad of other diagnoses such as fibromyalgia, osteoarthritis, lymphedema, depression, migraines, and more. We have members with Crohn’s, Ehlers-Danloss, and cardiac problems. Some folks are caretakers of others with these diseases.

Every day, it’s a challenge finding ideas that can ease each other’s pain or keep each other’s households afloat, but we do it anyway, and we keep at it. We are living for a cure for each and every one of these ailments, and we are going to try to carry each other along into the future until the cures come for us all.

You would be amazed at the strength of our folks. So many are in constant pain while they raise their kids, care for their parents, or just keep up with life. They are all heroes. No matter how low a body is, there is always someone who offers a reason to cheer up, and who encourage us to press on in the fight.

We have few rules in our group. There’s the sanctity of the group – nothing gets copied out to other sites. There’s also a sense of civility. We are not rude. We do not belittle each other or compete to see who hurts more or knows best. Incredible! I am constantly humbled, and forever grateful. 

Growing Myelin – N-Acetyl Glucosamine

There are supplements that help our bodies fight the damage from multiple sclerosis (MS). The one I’d like to talk about now is n-acetyl glucosamine (NAG). N-acetyl glucosamine (NAG) is an enzyme and one of the 8 essential sugars, a monosaccharide. (It is sometimes called NAG but more properly, it’s GalNAc.) Bodies use NAG for repairs including cartilage, and the muscosal lining of the digestive system. It aids in insulin production and in absorbing cholesterol. It can help suppress pain, tumor growth and viruses.

In one experiment, in rats, those which took NAG saw remyelination. In other words, they got myelin coming back to cover the nerves that were bare of it due to MS. Humans and rats have a lot in common, and scientists think that NAG will cause remyelination in humans. The dose that’s recommended is 3500-4000 mg a day of NAG. Because NAG effects the gut, it’s important to build up slowly and find the amount that you can handle. NAG comes in 500 or 750 mg pills.

Table 1. What N-Acetyl-Glucosamine Does in the Human Body.

Nerves	May cause remyelination.
Osteoarthritis	Cuts inflammation, decreases pain, increases mobility; reduces swelling and stiffness esp. in knee and hip
Cartilage	Repairs damage
GI Tract	Repairs the mucosal lining; may help resistance to Crohns, and other bowel disease such as ulcerative colitis
Multiple sclerosis	Suppress damage of the autoimmune response; reduce or eliminate symptoms
Type I diabetes	Suppress damage of the autoimmune response; reduce or eliminate symptoms
Immune system	Boosts disease and illness fighting ability; limit spread of viruses within the body
Brain	Aids in ability to learn
Insulin	Aids in secretion
Cholesterol	Aids in absorption
Temporomandibular joint arthritis	As effective as ibuprofen in reducing pain
Wounds	Aids in wound healing

Side effects you might experience include diarrhea, gas, heartburn, bloating and an upset stomach. Caution: if you are sensitive to shellfish or iodine, this supplement may bother you.

Note: I am not a doctor, just a researcher. What you read here is not meant to diagnose or treat any disease. It’s just my point of view on the information. 

Vitamins and Supplements - Good Deals!

I take a lot of vitamins and supplements for several reasons. I am trying to work, and to counter the stupefying effect of meds like Baclofen. Nutrients give me the best chance of overcoming the drugs without adding negatives. I am trying to help my body remyelinate. That is, I am trying to counter the impact of multiple sclerosis (MS) on my nerves. It slows the rate at which my body builds new myelin to keep my nerves covered and useful. Taking things like N-acetyl glucosamine (NAG) provides a way for my body to speed back up the process. I am trying to fight the impact of MS overall, by taking D3, B12 and others, and I am trying to be stronger and healthier. The prices for these supplements are pretty steep. I get the best prices for almost all of them on Amazon. They are often 40% off list price. Once a year, I pay $75 to be a member of Amazon Prime, and the rest of the year, I pay nothing for two-day air shipping from Amazon. It saves me a lot of money. There’s a link for the NAG I get from Amazon on this page.

Some things I get elsewhere. My B12 shots cost only a dollar apiece when I get them through Trim Nutrition. I’ve been getting my injections from them since early 2011, and have had no problems at all. The link for Trim Nutrition is on this page, too. 

How are you getting your vitamins and supplements?

Oils, Fats and Health

Fats consumed is important for anyone to manage, much less for folks with multiple sclerosis (MSers). A term you’ll see a lot is essential fatty acids (EFAs). Humans don’t make these, so they have to be consumed. The two EFAs that are important for human beings are alpha-linlenic acid, an omega-3 fatty acid, and linoleic acid, an omega-6 fatty acid. Some studies seem to show that MSers don’t absorb or transport essential fatty acids (EFAs) properly. Supplementing your diet with EFAs becomes critical.

Whether you have multiple sclerosis (MS) or not, balancing the omega fatty acids is important to promoting good health. Balance omega-3 and omega-6 fatty acids to promote health. The omega-6 to omega-3 ratio should be 2:1, 3:1, or 4:1. In other words, take 2 to 4 times omega-6 than omega-3.

There are three kinds of EFAs to be aware of: omega-3, omega-6, and omega-9. Omega-3 is alpha-linolenic acid (ALA), and is in fish oils, flaxseed, canola, soy, perilla seed, walnuts and walnut oil. High omega-3 suppresses inflammatory response. They help reduce heart disease, and lower LDL, the bad cholesterol. They reduce stroke; enhance blood vessel elasticity; and prevent build-up of harmful fat deposits in arteries. Omega-3 fatty acids contribute to brain and eye development, prevent cardiovascular disease, and help prevent Alzheimer’s. Fish oils include herring, mackerel, salmon, and sardines. But you can also get vegetarian DHA.

Omega-6 is linoleic acid (LA), which is in evening primrose oil (EPO), black currant oil, sunflower oil and seeds, safflower, peanut, cottonseed, rice bran, corn. and some vegetable oils. Too much omega-6 can be inflammatory and result in heart disease, cancer, asthma, arthritis and depression. Avoid cooking with them. Omega-6 oils work together with omega-3s, must be in balance (that ratio mentioned above).

Omega-9 is oleic acid - monounsaturated fat, and is , in sunflower, canola, olive, peanuts, pistachios, almonds and avocados. Canola and sunflower are very high in monounsaturated fats. They help reduce the risk of cardiovascular disease and stroke. Omega-9s are also produced by the body. They reduce key factors that contribute to heart disease and diabetes. They increase HDL (good) and decrease LDL (bad) cholesterol, and help eliminate plaque in arteries. The US FDA says 1 ½ tbsp per day canola oil can reduce heart disease.

The cell membrane is made up of fats and is constantly being remade. The gut and skin are quickly remade. Bones and cartilage are remade slowly.

Saturated fats make cells stick together. When cells stick together, you get clots, heart attacks, and strokes. Organs made of these cells become hard and inflexible, and result in atherosclerosis or hypertension. These cells are more prone to degeneration which may play a part in MS progression. Unsaturated fats are the building blocks of immune system chemicals, while monounsaturated fats are neutral for immune system.

It’s important to remember which foods and oils fit into which category of fat, so you can keep them in balance. Since fats interact with the immune system and with inflammation, it’s critical to MSers. That’s more than enough about fats for one day! Phew!!

Miraculous Magnesium for Misbehaving Muscles

I'd like to pass on one of the things that has worked at reducing how difficult life with chronic disease can be. It is helpful for multiple sclerosis (MS) spasticity, fibromyalgia trigger points, sprains and strains, and probably your kids' growing pains!

The simplest thing we've found is magnesium. It's required by our bodies, and is usually taken in a ratio with calcium, cal 2:mag 1. But, we tend to eat a lot of milk products, and for this, we need extra magnesium. Plus, for some reason, our muscles tend to run shortages of it. This can lead to spasms, aches and pains.

Oral supplements are great and necessary. I take a Cal/Mag/D3/Zinc capsule with food and a fatty acid capsule so it absorbs better.  I have also just started a magnesium that is slow release, to avoid it causing the runs, in an attempt to better fuel my muscles.

The most miraculous magnesium we've found is not swallowed, but applied to the skin where ever one has a sore muscle. The magnesium moves transdermally, right into the place where you need it right now. Epsom salts are magnesium, so if you can still use a bathtub, take a bath - warm water and a cup of Epsom salts added. Soak and enjoy how good you feel. There's another way to get the magnesium absorbed. You can easily make a liquid called magnesium oil or lotion. It's expensive, but it's very cheap if you make your own. (There is no oil in it; magnesium is slippery when wet.)

Magnesium Oil
1/2 c boiling water
1/2 c Epsom salts (magnesium crystals)
Mix thoroughly until the Mg seems dissolved well.
Allow to cool to room temp.
Apply to muscles.

Some people like to add a teaspoon or two of oil to this to make it less flaky when it dries. It also feels very nice that way. Olive or coconut oil have both been considered. You can also mix it with some lotion in the palm of your hand and then apply it. You don't need much magnesium oil - approximately six drops does an entire leg.

It takes about 20 minutes for the magnesium to make its way through your skin, but after that, you can wash off any residue. I haven't found anything indicating any toxicity level for using it externally, and so believe you can apply it as needed. I use it 4 to 6 times a day for spasms. I use it on my fibromyalgia trigger points. I also use it on my tight neck muscles, and it calms them right down.

Try it and let me know how it works for you!

Translated into Portuguese for our Brasilian friends ~ (not sure if the translation is great but hope it helps.)

Viver para uma Cura
Magnésio Milagroso

Eu gostaria de passar uma das coisas que tem trabalhado para reduzir o quão difícil a vida com doença crônica pode ser. É útil para esclerose múltipla espasticidade, pontos de gatilho fibromialgia, entorses e distensões, e provavelmente seus filhos dores de crescimento!

A coisa mais simples que descobrimos é magnésio. É exigido por nossos corpos, e é geralmente tomada em uma relação com o cálcio, cal 2: mag 1. Mas, nós tendemos a comer um monte de produtos lácteos, e para isso, precisamos de magnésio extra. Além disso, por alguma razão, os nossos músculos tendem a correr a escassez do mesmo. Isso pode levar a espasmos, dores e dores.

Suplementos orais são grandes e necessárias. Eu tomo uma cápsula Cal/Mag/D3/Zinc com alimentos e uma cápsula de ácidos graxos por isso absorve melhor. Eu também só começou de magnésio que é de liberação lenta, para evitá-lo fazendo com que as corridas, em uma tentativa de melhor abastecer os meus músculos.

O magnésio mais milagroso que nós encontramos não é ingerido, mas aplicado à pele, onde sempre tem um músculo dolorido. O magnésio move transdérmica, bem no lugar onde você precisar dele agora. Os sais de Epsom são de magnésio, por isso, se você ainda pode usar uma banheira, tomar um banho - água morna e uma xícara de sais de Epsom acrescentou. Mergulhe e aprecie como se sente bem. Não há outra maneira de obter o magnésio absorvido. Você pode facilmente fazer um óleo de magnésio líquido chamado ou loção. É caro, mas é muito barato se você fizer o seu próprio. (Não há óleo nele, o magnésio é escorregadio quando molhado.)

Óleo de Magnésio

1/2 de água a ferver c

1/2 sais de Epsom c (cristais de magnésio)

Misture bem até que o Mg parece bem dissolvido.

Deixar arrefecer até à temperatura ambiente.

Aplique para os músculos.

Algumas pessoas gostam de adicionar uma colher de chá de óleo ou dois a esta para torná-lo menos esquisito quando seca. Ele também se sente muito agradável assim. Azeite ou óleo de coco, foram ambas consideradas. Você também pode misturá-lo com um pouco de loção na palma da sua mão e depois aplicá-lo. Você não precisa de óleo de magnésio muito - cerca de seis gotas faz uma perna inteira.

Demora cerca de 20 minutos para o magnésio para fazer o seu caminho através de sua pele, mas depois disso, você pode lavar qualquer resíduo. Eu não encontrei nada que indique qualquer nível de toxicidade para usá-lo externamente, e assim acredito que você pode aplicá-lo conforme necessário. I utilizá-lo de 4 a 6 vezes ao dia durante espasmos. Eu usá-lo em meus pontos de gatilho fibromialgia. Eu também usá-lo em meus músculos do pescoço apertado, e acalma-los bem para baixo.

Experimente e deixe-me saber como ele funciona para você!

Who Will You Be?

MS, lymphedema, and other diseases tie a lot of us down. For me, travel has become something I long to do, but can't. What if you could enter a trance and put your spirit in the body of a plant or animal? What would you choose to be? What freedoms would you claim?

Eyes of the Raptor

In my mind’s eye, I see the tall monolith across the summer meadow.

I run towards it, drawn like iron to a magnet, the dark, red rock.

My feet skim over the meadowland, barely touching;

Wildflowers blur under foot until only their impression remains.

The deep, ember-red rock rushes close to my widening eyes.

Leaping towards the escarpment, I scramble for a handhold, grasping only air.

Exploding through the thinning air, I am atop the towering precipice.

Across the iron plateau, on the verge of nothing, a golden eagle awaits.

Hurled forward in the blink of an eye, I slam into his tufted plumage.

Breathless, I am within.

Launching, we leave the monolithic mesa, shoulders lifting as our wings spread out.

We push against the atmosphere, as solid now as the icy water in the glacial lake below.

Vigilant, we oversee our domain with a sharp bird’s-eye view.

We catch an updraft and spread our iron-sinewed wings;

Hollow bones lifting us, soaring through the heated summer sky.

The sun glints off the deep, blue-black waves below;

A spark that becomes a twinkle in our eyes, a hint of eaglets to come.

Movement at the edge of the dark green forest catches our keen eagle eye.

Focused, we pull our mighty wings tight against our torso.

We dive, silently stalking the marmot in the bear grass below.

Plunging swiftly, we slice through the gusting wind.

Our talons grab the fear-frozen prey. 

Momentum accelerates; our powerful wings driving hard against the whirlwind.

We are the eye of the storm; cyclonic winds whirling off our wingtips.

As we carry the dead weight of the marmot’s limp body,

We scream victorious, the long piercing cry of the sovereign raptor,

Conscious of our dominion over the wild Northern realm.

My mind’s eye closes, and I am lying in the summer meadow.

Wildflowers dance in the hot breeze, casting small shadows on my face.

My heart pounds, I exhale held breath, my lungs expand gulping air.

I open my copper-flecked eyes and wonder –

“Where are my wings?”

© Kit Minden

Flotsam and Jetsam

It's Easter, and it seems to be a day for posting poems. How is this related to chronic illness? Perhaps in three ways: first, I can no longer imagine going to the beach and waking along the strand - my activities are so truncated by MS that I feel claustrophobic from it; second, we still care about the world even though we are limited in various ways in our interaction; and third, we feel like so much flotsam and jetsam sometimes, the detritus left behind while others zoom ahead, pursuing life at its fullest. Hence, this poem:

I inherited a piece of jetsam from my grandfather Harold C. Palmer, who found it on Cape Cod, near Provincetown, Massachusetts.

Jetsam

He walked along seaweed strewn sand,

   reshaped by winter’s waves and the spume of the cold, salted tide.

Horseshoe crab shells danced abandoned;

   the water rocked a mottled brown carapace, inhabiting it like a ghost.

Among the black mollusks and white clam shells,

   he saw bits of beach glass - green, brown or rare and cherished blue,

   sanded smooth by endless tumbling in the abrasive Atlantic.

He bent to pick up a piece or two, a habit formed in childhood. 

Today, he did not pocket the speckled and muted

   evidence of man’s existence, but cast them back upon the beach.

On this grey and spattered day, he sought other treasure -

   the flotsam and jetsam of a shipwreck.

The S. S. Portland had gone down with all hands;

   distant cousins out of Maine lost to him forever.

There would be no unpacking the last suitcase,

   no delving through wallets for well-creased and folded letters from loved ones,

   no reverent opening of dark red leather-encased photos to view

      hazy images of those who were held dearest by the ones who died.

All that they carried with them in grey pin-striped vest pockets

   or shiny, black, glass-beaded bags

      was captured by the deep,

   locked with their corpses behind a reef so dangerous

      the wreck was never to be dived upon during his lifetime.

The wind whipped through his navy woolen pea coat,

   the spray drenched him, leaving him chilled and sticky with salt.

He turned to make his way back to the lighthouse, leaning into the wind,

   lifting his hand to his brow and looking down, away from the wet gusts;

As often seemed to happen when he had given up hope,

   his eyes lit upon a dark brown corner protruding

      from a mound of pebbles and weeds.

Picking it up, peeling off the slimy tangled kelp,

   he wiped clean the cast iron face of a eight-inch wide plate.

On the curved face of it, in raised letters, was the simple word “AXE.”

It had once been mounted on the wall, perhaps near the engine room,

   and held a sharpened fire axe ready for the possibility of a blaze.

The crew need never fear the boiler again;

   need never worry over the chance they might have to chop away

      burning beams, dumping them overboard,

   while loading panicked passengers into lifeboats,

      just in case the ship was going down.

No flame would ever again burn in the engine room

   or the water-logged timbers of the S.S. Portland. 

He took the axe holder home and, with a shaking hand,

   wrote “S.S. Portland” on a manila tag.

Then, tying it carefully with pale cotton string

   to the mounting hole in the upper right corner,

      he laid the ship to rest.

© Kit Minden

At the Farmer’s Market

for my friend Wil and other folks I know...

At the Farmer’s Market

At the farmer’s market, women ply their wares,

fruits of their labors — bread, honey, homemade soap, flowers.

Some days a profit made, some days not,

yet they cannot cease their artistry.

Producing goods for others lets them keep some for themselves —

the money plowed back into fertile ground to grow more tomatoes,

to raise more chickens, goats and bees.

Some domestic art stays at home,

stocking their sweet-scented larders,

feeding their families and friends,

communities knitted together with the wool spun from each woman’s spinning wheel.

At the farmer’s market, money changes hands for goods both dry and wet.

More is exchanged in each transaction that denies measurement —

friendly conversation, swapped recipes,

a tonic for an ailing plant, a remedy for a teething child;

a generous dollop of the golden butter of women’s lives.

Fat is skimmed carefully from the milk of life,

churned hard, early upon rising and throughout morning, noon and night.

The rhythmic splashing sound changes to the thump and beat of paddles

on creamy white butter, made pure through living every day,

turning golden in the light of each woman’s radiant soul.

At the farmer’s market, Lin sells green plants raised in her yard;

the salt of the earth nurturing life.

Chris and Cindy market breads and cakes, sausage and chickens;

Cindy’s tangy heart flavoring herbed vinegars;

Chris’s caring soul scenting the air like the spicy aroma of rosemary loaves.

Jan, of natural golden curls with the soul of an artist, stops to smile,

trading in conversation and good will.

Rachel displays honey, soap, baskets, and three young daughters;

Celine loves flower fairies;

Phoebe delights in the touch of cake before the taste.

Infant Josie, one day old when she first came to the farmer’s market,

is a priceless gift to each woman who stops by Rachel’s stall.

At the farmer’s market, women are the taste and texture of life.

Clothed in life’s earthen glory,

each woman is a bright lily bursting forth from soil and stem to astonish and delight.

© Kit Minden

The Roots of Multiple Sclerosis for Me

When I was going through some of the worst symptoms of Multiple sclerosis (MS), such as migraines, depression and panic attacks, I found that if I sat down and wrote a poem about it, I could often write my way out of how bad I felt. It was as if by naming the pain, and describing it, I could take away its power to cause me harm.

The other day, I was sorting through poetry I’ve written, and seeing the path of MS through it for years. In the past, I thought it was the path of Lyme or of environmental allergies. It still is those, but perhaps MS is the overarching concept that ties it all together. Reading some more research today, I learned one more tidbit about the Epstein-Barr Virus (EBV) that I found interesting. You probably know that it’s a major precursor to MS. Many people with MS carry signs that they’ve had EBV. The more well-known name for EBV is mono as in mononucleosis. My brother had mono in high school, but the rest of us didn’t. So, when I read about EBV and Lyme being variables that were common in MSers, I figured Lyme was my ‘entry’ disease. However, it turns out that only about a third of people exposed to EBV develop mono. Chances are, since my brother had it, and we lived in the same home, I was exposed to EBV, too, and carry it in my blood. So, I have two of the most common precursors to MS. Peachy!

Does that mean anything in particular? It doesn’t change that I have MS and have to deal with it, but it might open up other treatments that might help. If something comes out that lets one rid oneself of the markers for EBV or Lyme, then I will pursue both.

One question that comes up is when was I exposed to each of these. My older brother, Dave, was in high school when he had mono, and he is two years older than I am, so I was a teenager. I think Lyme happened at a much younger age, My family spent a lot of time hiking and camping, and playing in the woods. We didn’t worry about bug bites in those days. If you itched, you scratched. You tried not to scratch, so it would heal faster. That’s all I remember. At three years old, I had a bad reaction to some antibiotics I was on. I had a blood disease called thrombocytopenic purpura. I had a vitamin K shortage and my blood wasn’t clotting. It was easily remedied, but even so, I went for blood tests for it until I was 18 years old. I don’t know what my health was like before that, but I do know from old report cards that I missed 30 days of school some years in elementary school. Looking back, I would guess I got my tick bite before then, and that my sensitivity to antibiotics, foods, and other things started then.

One of the common denominators of Lyme, MS, and allergies is depression. I’ve had my fair share. It makes me feel as if I cannot breathe. Depression scares me so much, I want to run away from it, as fast as I can go. Here’s a poem written during one bout:

Where is Hope?

She woke to dreary blue, muddy green swirled in burnt sienna,

depression like ballast pinning her mind to the mattress.

The dark corners of her life offer hope no quarter,

she can barely see into them now.

They trap sadness in so many vials;

the dim light glints off old green mason jars

covered in dirt and spider silk.

Sneaking back into the cosmos of dreams;

she thinks, if the clock turns forward one more hour

daylight will illuminate these bleak recessed corners.

This mournful desolation will be pushed back

behind the latched cupboard door.

But in her dream she sinks in black quicksand,

death’s dark veil closes over her.

She starts from sleep.

Fear pounds at her psyche’s portal.

Panic chases her, runs her from her bed.

To lure her submerged mind from opaque shadows,

she turns on every single light,

catches her breath, slows her pulsing heart,

wills herself not to dwell in the nightmare.

She dodges the toll of despondency 

     until hope finds its way back.

© Kit Minden