Flu Bug?

There is a nasty flu like cold virus going around.  One person (my cousin) ended up with pneumonia.  This virus has been really difficult to shake.  Since I am on Tysabri, I have to avoid sick people.  We all know how difficult that can be so I try to be proactive.  I like to use natural ingredients for different ailments as much as possible for me and my family.  I recently made a home made cough syrup.  It's super easy. 

There are only 5 ingredients: 
garlic
red onion
ginger
lemon
dehydrated cane juice (raw sugar)

You will also need a jar with a lid.

Just slice the garlic, onions and ginger.  Layer ingredients in the jar with the raw sugar, squeeze 1/2 the lemon into jar and place the lid on.  Within 1 to 4 hours, a concetrated syrup will begin to form.  I drained the syrup and bottled it.  It keeps in the fridge for 6 months to a year.  It tastes ok, very sweet and you may want to rinse with mouth wash to eliminate that garlic and onion after taste. 

My husband has come down with a cold but it's not flu like at this time.  I gave him  2 teaspoons of my home made syrup a few nights ago.  This is some very concentrated syrup.  I will continue to give him 1 teaspoon daily for the next 3 days.  I also gave a bottle to my Mom who is also sick.  I believe it's safe for kids too.  I gave 1 teaspoon to 2 of my daughters because they were complaining of sore throats a few months ago.  I also gave them some zinc.  It knocked whatever it was right out.  They did not end up with any long term infections.

Live Well, Stay Active

Acupuncture, Rolfing (deep tissue massage aimed at realigning the body with gravity), hypnosis, and chiropractic care are examples of Complimentary and Alternative Medicine also known as CAM.   CAM Therapy is not an area that is typically covered by insurance.  Here are some ideas to cover costs from the Spring 2012 edition of Momentum, the magazine of the National MS Society.

If you are employed, ask your employer or health plan administrator about a "rider" in which people buy additional insurance coverage specifically for CAM services.  You may be able to get a pre-negotiated discount.

Take advantage of a flexible spending account or FSA.  This allows you to set aside pretax dollars for qualified medical expenses.

Ask CAM providers if they offer payment plans or discounts for paying upfront or in cash or save money by  researching community-based providers in your area that offer services such as yoga, massage and acupuncture.

The National MS society often provides access to free or low priced services such as yoga, massage and acupuncture.  Call 1-800-344-4867 to ask an MS Navigator about community providers and organizations in the area including your Society chapter.

Biogen Idec has a great website that offers a full range of assistance for MS patients.  They will send you free exercise DVD's, all you have to do is register.   I received my free copy and it's a great video that provides different ability levels.  They also have fitness and diet education, healthy recipes, an online journal for tracking your progress, games to stimulate your brain, free personalized support, a peer mentor program and many other resources. Simply go to MSActiveSource.com and get started.  It's a great website.

Live well and stay active.

Battling MS Fatigue

Lassitude a.k.a. physical or mental weariness a.k.a. MS Fatigue.  This is fatigue like no other.  It's not caused by lack of sleep or running around like a headless chicken even though it feels that way.  Fatigue typically hits me between 11:00 a.m. and 3:00 p.m.  I start to feel very sluggish despite the fact that I slept for 6 to 7 hours the night before.  I don't drink more than one cup of coffee per day because I am naturally hyper.  Some doctors might be tempted to diagnose me with ADD if they were to ask my family what I'm like between the hours of 6 p.m. and 9 p.m.  For me that's my down time which is usually spent blogging, talking, doing puzzles, cooking, reading, or watching TV and doing at least 3 of these activities at the same time.

Here are some things I found about fatigue that I thought would be helpful for the MS community or anyone  else trying to combat fatigue.

Get a B12 boost, especially if you take meds used to treat heartburn, cholesterol and diabetes which hinder B12's absorption.  Also if you are a vegetarian since the vitamin is found in red meat.  By taking 1,000 mcg. of sublingual (under the tongue) B12 daily, your energy levels can improve within 3 weeks.  They are absorbed 5 times better than regular B12 pills.  Always check with your doctor before starting a new supplement.

Potassium beats fatigue!  Fatigue is the number one symptom for those who are low in potassium.  Eat one cup of potassium rich foods daily, which is essential for energy production inside muscle and brain cells.  A few great picks are: spinach, sweet potatoes (love these), beans, lentils, tomato sauce and potatoes with skins.  Of course you could always go BANANAS!


Brighten your mood with clary sage.  Yes, this essential oil locks onto the same brain receptors that antidepressant medications do which increases serotonin output and can cut fatigue and tension as much as 50%.  Keep a vial of clary sage oil handy and inhale slowly and deeply four times daily or whenever you need an energy boost.  You can find this oil at just about any health food store.

Skip coffee.  Hmm, did I just say that?  Well, maybe in the afternoon, once you've already had at least one cup of coffee for the day.  Really, try cocoa made with dark chocolate instead.  Antioxidant rich flavanols in dark chocolate pump more blood to the brain, providing it with energy-revving nutrients.

Prayer for Receiving Healing

My Mom loaned me this book almost a year ago.  I finally started reading it today and I came across a page that was actually folded as a way to book mark it.  On page 85 of this book, I found the most amazing prayer.  Actually, below is the last paragraph of that page.  I plan to meditate on this prayer as much as I can.  I know that if it be God's will, I will be healed from MS.  If not, I believe He will continue to make it possible for me to live my life to the fullest regardless.

Dear Lord,
If this sickness has been caused by an infectious organism, show me the weakness in my immune system that has allowed it to find entrance into my body.  Show me if I am eating wrong.  Show me if I am relying on medications and man-made answers that are not in your will for me.  I loose, strip, and destroy the power and hold of this infection or disease from my body.  I loose, strip, and destroy the reproductive cycle of this organism.  I loose any wrong beliefs, any wrong attitudes, any bitterness from my soul that are sustaining vulnerability and weakness in my body.  I ask you to reveal any other sources of access that are in me.

In Jesus' name, Amen.

Breaking The Power--Liberty Savard
(Bridge-Logos Publishing 1997)

Whether you have MS, or some other illness in your body, consider meditating on this prayer.

Boston Advocate Conference

I want to thank Biogen Idec for inviting me to attend the 2011 MS Advocate Conference in Boston, MA.  The conference far exceeded my expectations. 

Thursday morning we woke up at 3:30 a.m. and headed to the airport around 5:00 a.m.  Our flight from Reno left on schedule at 6:00 a.m. and went very smooth.  We had a connecting flight from Denver which was delayed for 1 hour because it was snowing and the plane had to be de-iced.  We arrived in Boston an hour later than expected but there was a driver there to meet us at the airport as expected.  As a matter of fact there were 5 other people on the same flight that were headed to the same conference. 
A nice couple from Denver was actually across the aisle from us on the plane but we didn't know their destination until we were picked up at the airport together.  There was also a woman from Sacramento that I had previously met via e-mail.  I knew she would be at the conference but we didn't realize we were on the same flight.

 

We checked into the Boston Renaissance Waterfront Hotel.  Our room was on the 18th floor and we had an amazing view of the city and the sea.  After calling our family to let them know we made it, we freshened up and headed to the welcome dinner and registration. 

Dinner was served buffet style and there was also an open bar with red or white wine and several types of beer.  We mingled with a lot of different people from all over the country.  There were people from Kentucky, San Francisco, Oklahoma, etc...   Some were accompanied by their spouses and or caregivers and others were alone.  We were introduced to the Biogen Idec staff, those responsible for coordinating the conference and they did a fantastic job.  I'd say we were well taken care of.

After dinner we headed to our room to turn in for the night.  We were pretty exhausted since we had already been up since 3 a.m. (pacific time) and with the time difference, we lost 3 hours.  Besides that, the next day was set to begin with breakfast at 7:00 and the first session at 8:00.  I spent most of the night watching the news reports about how bad the wind was on the west coast.  The wind was reported to be pretty strong in Reno so we called the family to make sure they were all ok.  Everyone was fine.  My Mother and Grandma were getting ready to take the girls to see a movie so we said our good nights.  You know what they say, "What happens with Grandma stays with Grandma."   

The following morning, the alarm went off at 6:30 and it was so hard to get up.  I felt like I had just went to sleep.  Ugh!!  I didn't make it down for breakfast until 7:45.  I had just enough time to grab a quick bite before a musical bell began to ring.  There was a man walking around with something that looked like a xylophone made out of steel to signal the end of breakfast and time to head to the first general session.  I would say there were about 125 advocates.  The session started with a briefing from the CEO of Biogen Idec.  That was followed by information regarding advocate related expectations and guidelines.  Afterwards we broke out into smaller groups for a session on Health Care Reform and how it relates to the MS community.  There were 2 Wellness Workshop's on nutrition or relaxation.  We attended the one on nutrition where we learned how to make 2 healthy snacks.  They even gave us some cool aprons to take home.  We returned to our room to find a gift.  It was an ipod docking station and a picture frame.  Totally unexpected and very much appreciated.  I'm going to re gift the docking station and give it to the girls for Christmas.  Yes, I am a proud re-gifter.  As long as I don't give it back to the giver, I'm doing good.

Later that evening we had dinner and cocktails (wine again).  The food was amazing.  This pine nut and bleu cheese salad was really tasty.   For the main course I had Salmon w/white beans and a creamy sauce.  Paul had braised pork, yummy!  For dessert we were served the best bread pudding I ever had.  Paul doesn't like bread pudding but this one was truly gourmet and we both ate every drop.  The cooks for this event were wonderful and everything they served was great from breakfast, lunch dinner and dessert.  I know we gained at least 5 pounds.  Lord knows I could use it.



I'm tired of playing nice with
my relapsing MS





MS is NOT for the WEAK



During dinner there was a photo booth set up where we could take individual pictures.  Check us out.  This is an example of the new Tysabri brochures.  Hopefully they will choose our pics to be the face of the fight against MS.

The following and final day, we had training on how to be an effective speaker.  I learned to view public speaking as public thinking.  When I lose focus or find myself searching for a word or phrase, instead of filling gaps of silence with umm or uhhh, it's ok to pause and  think in front of my audience to help me regain my focus.  I can't wait for my next opportunity to speak and apply what I learned.  Hopefully sooner than later, lest I forget everything I learned.

On a scale of 1 to 10, I rate the conference a perfect 10 and I'm grateful for the opportunity.







Countdown To Boston

Today is Monday and in a few days my husband and I will be going to the training conference for MS advocates in Boston, MA.  My husband is my care partner and also my best friend.  We have had a lot of "firsts" together, including our trip to the east coast. We're staying at the Renaissance Boston Waterfront Hotel.  We may try to venture out a little between meetings or maybe we just relax as much as possible since the 3 hour time difference will affect us.

From Boston we will fly to New Jersey to visit my sister-in-law for one day, maybe go to Central Park for a bit of sightseeing.  This will be my first time meeting her in person even though we communicate a lot thanks to Facebook.  My husband hasn't seen her in a very long time so we are really looking forward to hanging out with her and her husband.

Stay tuned for updates about our east coast journey.....

Healthcare - Conspiracy in the Biggest Little City

     Having MS has shown me a side of health care that I never thought I'd see. The world of Neurology.  My first neurologist is very good in the MS world but I'm afraid that when it comes to the human element, his people skills are not good at all.  I will refer to him as Dr Terrorist. When I first started seeing Dr Terrorist it took me a while to catch on to his rude behavior.  I would chalk it up to a bad day because he wasn't always that way.  During discussions with other MS patients, at least 90% of them always had a very terrified expression when I would mention his name.  Their experiences with him were way too much for them to handle and it didn't take long for them to look for someone else. 

     Then the day came when I couldn't take it anymore.  I cannot truly remember specifically why I left, it was a series of things regarding his behavior.  He was just too disrespectful.

     The next neurologist that I chose didn't know much about MS at all.  He was more of the psychologist type.  Let's call him Dr Shrink.  I didn't do my homework and I assumed that all neurologists would know how to treat MS.    That's when I recognized that neurology has many, many sub fields and when I think about it, it makes perfect sense.  MS affects our central nervous system and anything that's central is usually pretty complicated.  I relate the central nervous system to a computer.  Dr Shrink was great because he really did care.  I was at least able to discuss my concerns with a doc who would listen.  Since he didn't know much about MS, he is the one that sent me to UCSF where I was exposed to even more neurologists. 

At UCSF (Univ. of California San Francisco)I met another type of neurologist.  One who specializes in MS in African-Americans.  I shall call him Dr Afro/MS.  If you follow my blog then you have read my post about this.  Dr Afro/MS is the one who suggested a more aggressive approach to my treatment which is my current treatment, Tysabri.  Now, the funny part about this is that Dr Terrorist and Dr Afro/MS are very good friends and colleagues.  Soooo, I eventually ended up going back to Dr Terrorist because he really knows his MS and I needed a local doctor that I didn't have to educate about my condition.  Plus that gave me access to Dr Afro/MS without having to travel to San Francisco.  It seemed like a good idea at the time.

     For the past 3 years, I handled Dr Terrorist pretty well because I didn't have to see him very often.  Recenly Dr Terrorist hung up on me twice for no reason.  I had an appointment scheduled with him and I called to find out if it was really necessary for me to be seen since I had just saw him a month prior and I was doing very well.  I will admit that I am very forgetful at times.  He told me to just come in, but then he hung up.  He never answered my question, and he didn't say bye.  So I call him back and said, "I think we got disconnected somehow."  Once again with no explanation he tells me to come in and hangs up.  I know that if it was important he would've told me.  You hang up on me once, shame on you, you hang up on me twice, shame on me.  There wasn't about to be a 3rd time.   This was the final straw of disrespect.  My husband was ready to pay him a visit and trust me, in this visit Dr Terrorist would become Dr Humble and would not have the upper hand.  I think my husband just wanted to teach him a thing or two about respect.  Having MS is hard enough without being treated like a loser by the one whom you depend on to manage your condition.

     I attempted to schedule an appointment with another neurologist.  The first group of neurologists that I contacted had a scheduler who wanted to know who reffered me.  I told her that I referred myself and that I was looking for a new neurologist.  That's when she informed me that they do not take previous patients of Dr Terrorist because apparently he does all of their hospital calls.  What does that have to do with me? Whatever happened to patients rights?  This is an entire group of neurologists.  Can they really refuse to see a patient based on these grounds?  Now I'm very frustrated and sad and mad and at that moment I just burst out into tears.  That's when I realized that there was a "Conspiracy in the Biggest Little City."  That only left about 2 or 3 neurologists in the Reno/Sparks area to choose from that are familiar with MS.  First I prayed, then I contacted the TOUCH program.  This is the program that every doctor and patient must be registered with in order to prescribe or receive Tysabri due to the high risk associated with this treatment.  I reported Dr Terrorist then requested their assistance finding a new neurologist in my city. 

     In the meantime, God was working on a plan.  I get teary eyed just thinking about how this all went down.  You see, by this time I had a good relationship with a well known coordinator who actually helped me become an MS advocate.  How appropriate right?  Well at my first speech last month, the coordinator introduced me to a local neurologist who agreed to see me.  I will call her Dr Savior.  She was also good friends with the guest neurologist at the dinner.  This guest neurologist from New York shed some light on MS that I had never heard before.  I consider him to be an ally because he knows all 3 sides of the fence:  doctor, patient and treatment.  He has MS and is also on the same treatment, you guessed it Tysabri.  Do you see how God worked that all out?  Remember earlier I mentioned that the first thing I did after breaking down in tears was pray.  What are the odds of me ending up as a speaker at a dinner where I would not only meet Dr Savior but also be introduced to a neurologist who was also a patient, Dr Ally.  And let's not forget the coordinator.  We were all in the same room at the same time and I didn't even get a picture.

     I had my first appointment with Dr Savior 2 weeks ago.  She understood everything that I was going through, including the "Conspiracy in the Biggest Little City."  She doesn't have to rely on any of these other neurologists when it comes to her patients.  It turns out that Dr Terrorist didn't discriminate when it came to his behavior.  He is this way with other doctors and anyone else who comes in  contact with him.  So you mean to tell me that every body is scared of him, not just his patients?  He should be retiring soon.

    I left my appointment with Dr Savior feeling so liberated and I cried but this time it was tears of joy.  I didn't realize the level of anxiety that I had until it was all over.   Thank you Lord for ordering my steps and using people to answer my prayers and bless me.