Shelter with My Good Companions

I want to talk about how the support group on Facebook is the best thing in the world for me. I also want to talk about promotion of each other’s small businesses. When I promote something someone is doing for MS, it’s because I believe in the concept. I don’t get paid for saying consider what someone else in the group is doing. If one of our members is selling something that could help us, more power to her or him. It’s better the money goes to someone who needs it, than to some unknown corporation. We have folks crocheting, knitting, selling supplements, signing folks up for a discount buying program online... you can see our small businesses on Making a Living for a Cure on Facebook https://www.facebook.com/groups/293489914050488/   If you are coping with a chronic disease and you have a small business, feel free to tell us about it in this open group.

Our group on Facebook is private. You can’t find us if you Google whatever you know about us. The only way to gain entry is by invitation from someone already in the group. We have about 300 members, and I’d guess about a third of them are active, meaning they comment every day or two. We have folks with MS, rheumatoid arthritis, gout, osteoarthritis, fibromyalgia, lymphedema, depression, brain fog, autism, and more. We walk, use canes, walkers, wheelchairs, and are bedridden. We are married, divorced, still single, widowed, have children, and grandchildren, or have no kids. Some of us work full-time, some part-time, some at home, and some not at all. We are mostly American, but also Canadian, Turkish, English, Scottish, Irish, Indian, German, Brasilian, Cuban, Cherokee, Cheyenne, Mexican, Thai, ... We are mostly white but also black, Hispanic, Asian, native American.... We are Protestant, Catholic, Baptist, Fundamentalist, Jewish, Muslim, Buddhist, spiritual, atheist and agnostic, and ... although, we do not proselytize. We are Veterans and pacifists; we honor each other’s choices. We are Democrats and Republicans, although we don’t get into that often. In other words, we are from diverse backgrounds and we get along incredibly well. We are knit together by compassion. We offer each other support and encouragement. We help solve our problems, commiserate with our failures, and celebrate each other’s joy. We have come to love one another so quickly, as we see each other through the rocky shoals of illness to navigate through clear channels.

In our group, when I am low, so many step up to lift me above the muck. When others are low, I get to help them find their way above the chop of the salty waves.

To the wonderful women and men who live for a cure.

Shelter

Sunshine beams down from bright blue skies,

a soft breeze lifts my shirt sleeve, warm kiss upon my brow,

fluffy white clouds drift aimlessly in the distance;

I stand, swaying gently, a sunflower following her liege,

his golden chariot draws him across the vault of heaven.

Until without a sign of change in the wind,

a tempest blows harsh gusts,

I fight to sit upright against the gale force,

dark gray clouds threaten to disgorge themselves;

before I can turn my wheelchair,

aim it up the ramp into the waiting doorway;

the wild gray yonder pelts me with an icy rain;

soaked before I can complete a breath,

I call out to my companions online,

“The rain is drenching me, and I am too cold.”

In a flash, my friends arrive,

erect a shelter over me with wise words,

affirmations aburst with love and compassion;

my heart grows abundant and full,

my soul overflows with hope;

storm beaten back once more,

I gaze out the window,

sunshine beams down from bright blue skies.

MS Means More Supplements

Today’s blog is kind of dry reading. It is focused on some of the vitamins I take because of MS, and for good health. It seems like every time I turn around, there’s another thing we have to take if we want to counter these immune system diseases. There’s no question that it busts my budget every month.

I think it’s good to remind ourselves that what works for one of us, might not work for another. It depends on the conditions we have, and the medicines we are taking.

This is all cobbled together from what I have learned over the years. Research it for yourself, talk to your doctor or to other health care professionals you trust, and see what makes sense to you.

The further away from the equator you go on the Earth, the greater the prevalence of multiple sclerosis (MS). A likely explanation is that the more sunlight you get, the more vitamin D your body produces, and the more you are protected from MS. (http://bit.ly/GUu6KX). It might also help you to live longer. Well, that’s nice, I thought, but I am already middle-aged, how will knowing that help me now? But, it turns out that taking D now can reduce the relapse rate of MS (http://bit.ly/GXi9BT ). One study had folks taking 14,000 IU a day, and they saw an impact on their MS. Folks who took only 1000 IU a day did not see any change. Looking around the web, I found people taking as high as 50,000 IU a day, and feeling great. But another study showed very high dose D could actually make MS relapse more (http://bit.ly/HfILi5). Confusing? By the way, there is a blood test you can take to see what your Vitamin D level is. Ask your doc!

Here’s what you might consider. Apparently, the best form of Vitamin D is D3. Just plain D is actually D2, which breaks down in our bodies into a couple of things, one of which is toxic. D3 does not do that. D3 works better if you take it with Vitamins K1, and K2. When combined with K1 and K2, they act synergistically (they make each other work better) for healthier bones and blood vessels. I also take Vitamin A with my D. These are all fat soluble vitamins, so I take them with healthy fats: vegetarian DHA and evening primrose oil (EPO). If you are not allergic to fish, you can take them with cod liver oil or krill oil. I take vitamin E at the same time, 400 IU. Vitamin E helps protect muscles, helps your body make red blood cells and use Vitamin K. One site that has trustworthy information on vitamins and supplements is the University of Maryland Medical Center (http://www.umm.edu/altmed/).

Fats move across cell walls of the small intestine, carrying those vitamins that are fat soluble. From there, they go into the bloodstream, to end up being stored in the liver until you need them. (Eat some nuts! They have good fats in them. We can talk about that another day...)

Here’s an important point: if you take essential oils (DHA, EPO, cod liver, krill, etc.) 15 or 20 minutes before you eat, it can slow down digestion and prevent blood sugar spikes. It can help keep your blood sugar level, and it can also help you to not gain weight. When you allow your blood sugar to spike, your pancreas makes extra insulin, which goes to the liver and has it make triglycerides, which are not good fats.

Vitamin K interacts with some antibiotics, warfarin or Coumadin, and some other medicines. Look them all up before adding a vitamin, and check with your doctor regarding what is not safe for you.

Do business with the great folks from our support group!

https://www.facebook.com/groups/293489914050488/

Here's a rough translation into Portuguese for our Brasilian friends ~

MS Meios Suplementos Mais

Blog de hoje é uma espécie de leitura seca. Ela está focada em algumas das vitaminas que eu tomo por causa do MS, e para uma boa saúde. Parece que toda vez que me viro, não há outra coisa que tem que tomar se queremos combater estas doenças do sistema imunológico. Não há dúvida de que ele bustos meu orçamento a cada mês.

Eu acho que é bom para nos lembrar que o que funciona para um de nós, pode não funcionar para outra. Depende das condições que temos, e os remédios que estamos tomando.

Isso tudo é remendada do que tenho aprendido ao longo dos anos. Pesquisar por si mesmo, converse com seu médico ou outros profissionais de saúde que você confia, e ver o que faz sentido para você.

Quanto mais longe do equador você ir na Terra, maior a prevalência da esclerose múltipla (MS). Uma provável explicação é que quanto mais a luz do sol você ficar, mais vitamina D o corpo produz, e quanto mais você está protegido de MS. (Http://bit.ly/GUu6KX). Ele também pode ajudá-lo a viver mais tempo.Bem, isso é bom, pensei, mas eu já sou de meia-idade, como vai saber que me ajudar agora? Mas, acontece que agora tomar D pode reduzir a taxa de recaída de MS (http://bit.ly/GXi9BT). Um estudo tinha gente tomando 14.000 UI por dia, e viram um impacto em sua MS. Pessoas que tomaram apenas 1000 UI por dia, não vi nenhuma mudança. Olhando ao redor da web, eu encontrei pessoas que tomam tão alto quanto 50.000 UI por dia, e sentindo ótimo. Mas outro estudo mostrou D dose muito alta pode realmente fazer mais recaída MS (http://bit.ly/HfILi5). Confuso? By the way, há um teste de sangue que você pode tomar para ver o que o seu nível de vitamina D é. Pergunte ao seu médico!

Aqui está o que você pode considerar. Aparentemente, a melhor forma de vitamina D é D3. Basta D simples é, na verdade D2, que se decompõe em nossos corpos em um par de coisas, uma das quais é tóxico. D3 não faz isso.D3 funciona melhor se você tomá-lo com vitaminas K1 e K2. Quando combinado com o K1 e K2, agem sinergicamente (eles fazem cada outro trabalho melhor) para os ossos saudáveis ​​e vasos sanguíneos. Aproveito também a vitamina A com a minha D. Estas são todas as vitaminas solúveis em gordura, então eu levá-los com gorduras saudáveis: DHA vegetariano e óleo de prímula (EPO). Se você não é alérgico a peixe, você pode levá-los com óleo de fígado de bacalhau ou óleo de krill. Tomo vitamina E, ao mesmo tempo, 400 UI. A vitamina E ajuda a proteger os músculos, ajuda o corpo a produzir glóbulos vermelhos e usar vitamina K. Um site que tem informações confiáveis ​​sobre vitaminas e suplementos é a Universidade de Maryland Medical Center (http://www.umm.edu/altmed/).

Gorduras mover-se através paredes das células do intestino delgado, levando estas vitaminas que são solúveis em gordura. De lá, eles vão para a corrente sanguínea, para acabar sendo armazenado no fígado até que você precisar deles. (Comer algumas nozes! Eles têm gorduras boas em si. Podemos falar sobre isso outro dia ...)

Aqui é um ponto importante: se você pegar os óleos essenciais (DHA, EPO, de fígado de bacalhau, krill, etc) 15 ou 20 minutos antes de comer, pode retardar a digestão e evitar picos de açúcar no sangue. Pode ajudar a manter seu nível de açúcar no sangue, e também pode ajudá-lo a não ganhar peso. Quando você permite que seu nível de açúcar no sangue a espiga, o pâncreas produz insulina extra, que vai para o fígado e tem que fazer triglicérides, que não são boas gorduras.

A vitamina K interage com alguns antibióticos, varfarina ou Coumadin, e alguns outros medicamentos. Olhe-os todos antes de adicionar uma vitamina, e verifique com seu médico sobre o que não é seguro para você.

Fazer negócios com os grandes povos do nosso grupo de apoio!

https://www.facebook.com/groups/293489914050488/~~V

Spasms

There are days when my left leg spasms endlessly. It’s been going on ever since a bad fall I took last August. It interferes with sleeping, eating, and working. Sometimes, my right leg joins in. My right foot is my classic MS drop foot which also has the Babinski reflex that indicates neurological damage – the big toe spasms up when the bottom of my foot is stroked.

My doctors gave me several different medicines to try. I reacted badly to gabapentin/Neurontin, and to tizanadine/Zanaflex. I seem to be able to take Baclofen and cyclobenzaprine/Flexeril, but Baclofen can cause spasms, too, and flexeril doesn’t seem to stop this kind of muscle spasm.

I looked into what supplements and therapies could help with spasm, and here’s some of what I found, and what is working for me. Remember, research these for yourself, talk to your docs, make sure that nothing you are going to try conflicts with any of the medicines or conditions that you deal with each day.

Magnesium: can be taken as a pill, added to food in drops or rubbed into muscles as an oil or lotion.

I take 3 drops of Concentrace on each meal, and a calcium/magnesium capsule. What has really worked on my muscles is a magnesium lotion by Ancient Minerals. I rub it into the spasming muscles, from the place the spasm starts in my glutes to the bottom of my foot. Nine out of ten times, the spasm stops cold!

Chiropractic: a good chiropractor can help release the tension around the spine, and help get messages flowing from nerves to muscles.

It’s hard for me to get out right now, so I went to youtube and investigated videos on moves for ‘popping’ the sacroiliac, what I know is out of alignment for me, and taught my son. When he does this manipulation for me, the spasm usually stops.

Water: Dehydration can cause spasm so keep your fluids up. Good for your general health, too.

Some other minerals and vitamins: Iron, zinc, calcium, vitamin D3, potassium.
 I’ll write more on these in the next blog.

Living for a Cure

I have multiple sclerosis, MS, as well as fibromyalgia, lymphedema and various other diagnoses (DXes). Three months ago, I got together with Tammy Mailhot and started a private support group on Facebook (fb) for people with any or all of these chronic ailments. It's called Living for a Cure. Now, we have over 200 members. Every day, we try to find solutions to help each other. Everything passes in the fb chat so quickly, that we need a place that's more easily searched to keep track of the best of what we are learning. That's what this blog is for. I'll be slowly adding to this each day. Please remember that what we try or suggest are just ideas coming from others who have the same or similar DX as you or someone you love. We are not doctors, although we feel like we have to know more than our docs most of the time. Take our ideas and research them yourself. Talk to the medical professionals whom you trust. Ask questions. Hopefully, feel better!