Your immune system defends you from viruses and bacteria that are on the attack. It can be a good thing, for example, inflammation helps cuts heal. Inflammation also helps damaged muscle tissue heal. It’s necessary for keeping you well.

Inflammation is part of your innate immune system. In other words, you are born with it. When your immune system is not right, your own immune cells, usually the white cells called lymphocytes, think your own cells are the bad guys and attack them instead. That’s when inflammation becomes chronic and long-term. Chronic inflammation can occur in asthma, TB, rheumatoid arthritis (RA), ankylosing spondylitis, celiac disease, fibromyalgia, Grave’s disease, multiple sclerosis (MS), lupus, psoriasis, allergies and many more disorders.

Some medicines are anti-inflammatory. NSAIDs like aspirin, ibuprofen, ketoprofen and naproxen are anti-inflammatory. So is a new kind of drug called an ImSAID. Your doctor will often suggest using corticosteroids as an anti-inflammatory, too. Natural corticosteroids occur in your body like cortisol. There are oral and IV steroids, and sometimes they are inhaled.

Some herbs are anti-inflammatory such as ginger, cannabis and turmeric. Ice is anti-inflammatory, too. Fish oil, green tea and tart cherries are more examples of things that fight inflammation. In addition, some therapies fight inflammation like acupuncture.

The first thing you can do to fight inflammation though, is to change your diet to one that is non-inflammatory. (A lot of folks call it anti-inflammatory.) That involves not eating foods that contribute to inflammation.

The simple list of things to do with diet is do not eat gluten, peanuts, soy, corn, and dairy. There are some exceptions in this list.

Gluten causes gut inflammation in most people. In addition, about a third of us develop antibodies against gluten proteins. Almost all of us have the potential to develop those antibodies. Antibodies that fight gluten can end up attacking some organs like the thyroid or pancreas creating problems like hypothyroidism or type 1 diabetes. Gluten is in wheat, rye, barley and triticale. Don’t eat it!

Peanuts are another inflammatory food. Tree nuts are good to eat, but these ground nuts are bad news for your body. They are also a common food allergen, another source of inflammation.

Fresh corn is anti-inflammatory so go ahead and enjoy it. However, corn flour, corn syrup, and corn products in medicines are inflammatory. Cut them out of your diet.

Soy when it’s processed can cause inflammation. Avoid soy protein isolate and concentrates and soy foods like cheese, ice cream, oil and burgers. But, do eat fermented soy and whole soy products. Miso, tempeh, tofu, soy milk and edamame area all good to eat.

Dairy is very inflammatory. It can cause gas, bloating, acne and allergies. There are two elements in milk that cause the most problems, the sugar, lactose, and the proteins, casein and whey. In fact, casein is similar to gluten in structure and people with gluten intolerance are often casein intolerant, too. Milk is also acid forming and damages alkaline reserves like calcium, magnesium and potassium in your bones.

Cut back dairy or eliminate it. One study showed that eating a little yogurt and good quality cheese is good for you, but test it for yourself. Eliminate dairy for a week or more and then add it back in. How did you do?



Those are the main foods to start with modifying in your diet. One way to do it is to plan ahead, buy substitutes, and set a date for stopping each food. Have you tried doing this before? What do you think about it?

A good friend, Cathy Chester, found words that start with the letters from Happy New Year that expressed her thoughts (http://www.anempoweredspirit.com/how-to-see-good-in-world-2016/)

I like writing a poem that starts with the letters to express mine. Here’s one:

H appy times that were joyful seem past,
A blaze with cheer, memories shine brightly,
P raiseworthy, contrasting with the grief-laden
P ain that blooms from the diseases we carry.
Y outh was full of delight, ignorant of our future.

N ourish our souls with new joys,
E ven when we cannot repeat the past,
W e can stand together, and when we do,

Y ears of pain will drop away,
E ncircled with love that shines from each heart,
A glow with warmth, respect and friendship.
R ejoice! The new year gleams, radiating hope!

© Kit Minden

Getting the wheelchair from Karen Goins was amazing! First, it was great to meet Karen and her husband, Larry, and mother-in-law, Anna. They are all incredibly nice people. We spent an hour or two cruising around a Michael’s store in Williamsburg. Karen was looking for some pens to use on adult coloring books. It was so much fun to be able to move around the aisles on my own, and to hang out with Karen. She’s great!

Butterflies represent people with MS. We are each as beautiful.

(http://michellezelli.com/blog/10-adult-coloring-books-to-help-you-de-stress-and-self-express/)


Larry showed my husband all he needed to know about the wheelchair. The two of them swapped some NASA stories, too. A great guy!


One of the things I wasn’t expecting was how great it was to be with someone who was a lot like me from multiple sclerosis (MS). Because of the way we were both impacted I found myself grinning from ear-to-ear and laughing! I didn’t know what I was missing, not being with people who can understand. I could be a person without having to prove anything. I just was me! It was the best feeling!

Here’s a pic of Karen and I in our wheelchairs. Thank you, Karen! You made my year!!

Today is exciting for two reasons. The main reason is that I get to meet one of the great gals from Living for a Cure, Karen Goins. She is an artist who lives in Virginia Beach. She has so kindly shared her love of art with me, sending me supplies so I could learn some of her craft when I needed a boost. She’s really dynamic! The second reason I am excited is that Karen is giving me another goodie to help me with the limits imposed by multiple sclerosis (MS). She is giving me a folding power wheelchair! Karen bought a chair a few months ago and took it on a Delta Airlines flight when she went travelling. Unfortunately, the wheelchair was damaged. Delta stepped up and bought her a brand new chair. Amazing company! When the repairman came by to pick up the damaged chair, Karen told him that I was about to fundraise for the same wheelchair. He told he to just give me that one! Can you believe it? Karen said all it needs is a screw and it will be as good as new now! I am awed and stunned and amazed, and so grateful.

Today, my husband is driving me to Williamsburg, about halfway to Karen’s, to meet her and to get the chair. Incredible! It’s an Easy Light and here’s the link to the company’s website http://www.ezlitecruiser.com/ I have to say that I don’t really feel ready to meet anyone. Medicine I took made my teeth break... My hands won’t work to put earrings in my ears… My husband’s teeth need major work, too.

We are just starting to get on top of things financially. I am working as a tutor and tech writer and my income is beginning to rise. It won’t be until later this year that I can afford to get our teeth fixed. My husband’s income is that of a retired guy. He is a disabled American veteran and is limited by arthritis and diabetes and the Agent Orange impact from Vietnam. Getting us up and over the hump financially is up to me. So, embarrassed as I am to meet anyone from our gang, I am going anyway. I need the wheelchair, but more than that, I want to meet this wonderful woman, Karen Goins. What could be better than that! I’ll get pics if I can and post more this evening or tomorrow so keep an eye out for more news on the chair and on our meeting. (The friendship plaque is from(http://wallpapersblog.com/cool-friendship-hd-wallpapers.html)

Blogging Again Despite Fatigue

I want to start writing a blog again. Working took all my energy last year and I stopped writing. Do you know how fatigue does that? Having several autoimmune diseases, fatigue is something I deal with every day.

One way that people think about fatigue is using the Spoon Theory by Christine Miserndino (https://youtu.be/jn5IBsm49Rk). The theory says imagine you have a spoon for each piece of energy you will use during the day. In this case, imagine you have 12 spoons, each representing a 12^th of what you can accomplish in the day to come. Then, plan your day by distributing each spoon to each activity. When your spoons are used up, your day will be done.

  

If I have to tutor or do technical writing, I am going to use up almost every bit of energy or spoon that I have. I even take caffeine pills to make it through without nodding off, and I take one for each student’s session. (I take bicarb with it to absorb the acidity.) When I am done tutoring, I come home, change into comfortable clothes, and take a nap. Sometimes, I have to tutor instead of nap and then I have to take another caffeine tablet.

It has been worth it, though it has been hard. Last December, I had to borrow the rent from my brother and sister. This year, I will not have to borrow any money. I am working more hours each month. I even won an award for being a great tutor!

I am able to do this – to get this much better even with the Secondary Progressive MS (SPMS) that I have, because I take Protandim. It’s a tablet that is a combination of 5 herbs. It protects my brain and fights MS for me. It’s wonderful!

How are you coping with fatigue? Are you able to work at all?

Newly Diagnosed? Some Things to Do Now

What to Do When Everything is New

You’ve just been diagnosed with a chronic illness, and are dizzy with the thought of it. The learning curve is steep. Listening to your physician, and perhaps reading the literature that she or he has given you are both good first steps. The problem is, that going only that far leaves you in the position of waiting, and of letting time pass without action. One of the important things that many of us have learned is that letting time pass without fighting full out allows your disease to progress. The longer it progresses, the harder it seems to be to turn it around, so that you are chasing it, instead of it chasing you.

What’s a body to do? Here are some ideas from people who have been through it.

First, don’t consider your diagnosing physician the be all and end all of your medical care. Begin to assemble a team of people to support you. Start with your primary care physician (PCP) and your specialist such as the neurologist (neuro) or endocrinologist. Look into what other medical specialties might know things to help you. Add to that some practitioners of alternative treatments such as a chiropractor (chiro), acupuncturist, massage therapist, physical therapist, herbalist or naturopath.

Now, think about your support. Who else needs to be on your team from the get-go? Your family and friends are critical. Imagine, if it’s hard for you to adjust to the new diagnosis, it’s doubly hard for them. They don’t feel what you feel, and their fears about loss are different fears than yours. You might fear a stiffening body or a wheelchair in your future. A person in your family might be thinking about the loss of your contributions to family life, and the contributions you make that he or she will have to make up for somehow. Of course, if you’ve been covering your losses well, your partner might not even be thinking of losses, but just of a bit of time out for the doctor’s appointments, some medicine, and life back to normal. It will not be normal, even when it appears to be so.

When you’re ready, take a look on youtube and other video sites for short films about your disease by people who have it, or by the organizations that do work supporting research into it. Listen to voices of experience. Come back to listen again in a few months, once you have a deeper understanding of your illness.

Once you find some videos, ask your loved ones to watch them with you, or to watch the videos and then talk about them with you. It’s important for everyone to learn that even on days when you look well, this disease is still going on inside of you, and you are still spending energy in the fight against it.

Some diseases take a lot of energy from you. For example, multiple sclerosis can begin to cause fatigue without notice. Suddenly, you could be sleeping in the middle of work or play. It’s important to begin to ration your energy right from the start. Ease up a little on your commitments, and plan time to rest and heal in between activities. It’s okay to use the power scooter at the grocery store, instead of pushing the cart. Learn to save your energy for what counts, and take advantage of things that will lower the stress on your body. Part of conserving energy is learning to say “No.” Balance is more important than ever, and you are in charge of making sure you have some equilibrium in your life.

Some diseases will cause aches and pains. Your doctor will probably have some prescriptions to try. There’s also a lot you can do with diet and nutrition to minimize pain. Don’t wait until your illness is crippling you. Make dietary adjustments as soon as you can. You can slow the progress of many diseases just by changing what you eat.

Disease usually occurs and grows when the body is in a state of inflammation. You can change that by eating and anti-inflammatory diet. I'll go into some food issues tomorrow. For now, search for gluten free, Dr. Wahls', Dr. Fuhrman's, Dr.  Jelinek's and Dr. Swank's diets. 

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!