Emotional Hangover from MS - and what to do.

The MS got a hold of me, worse than it’s been in months.   But there were reasons.  Pushed beyond comfort by demands of life, it caught up with me.  And caught up bad.   

Often we talk about the physical pain of MS, the tremors, the spasticity.  The pain the comes from every nerve ending or the fatigue that covers us in a lead blanket.

And then the pain wanes and we feel better for a bit.  But the emotional sludge that remains behind is detrimental to our health and happiness.  

And boy did I feel it this morning when the day got started.  Frustrated, irritated and angry at life, my legs crumbled their way out of bed to get some coffee.  Crumbled for sure as there was no jumping for joy today.  



Why my?  Why this damn MS that suffocates me and keeps me jailed up in my body?  

Sure, I aim for happiness.  Positive thinking and all is great an my focus.  But today, I’m not going to fight it.  My emotions are way over the top upset and there’s no denying that I really I despise my MS right now.  

Unfortunately the angrier I get the more worked up my MS becomes.  This isn’t productive or healthy for anyone.  
Time to force a change! 

Yes, I’m using the word force.  Enter something beautiful in life:  A sit in the garden.  A chat with a friend.  A stroll through the neighborhood.  Find the beauty, grace and appreciation that is the bases of life.  It’s there but when I’m this worked up it’s hard to see beyond the tears. 


But forcing this is easier than it may seem.   Just sitting out in the garden for a few minutes is helping.  

BREATHE DEEP EXERCISE
1.  Breathe in deep to the chest.  
2.  Take the breath deeper, into the belly and gut and let it distend out as far as possible
3.  Keep taking in more air, aware of the beauty around you. 
4.  When full of air, sit a second then exhale deep.
5.  Exhale through the mouth, letting out everything dirty, angry and evil. 

Repeat! 

Ahhhhh...  Feeling so much better already.  

Now, to remember this trick during the busyness of the day.  


Now that I can see straight and am calming down, time to record my issues.

Even after almost 20 years of this illness, I am still learning about it.  Today was a lesson learned.  AFter three days of physical hell, the emotional hangover was even worse.   Next time my body faces exacerabations from mismanagement I must remember this tailing wind of emotions that have entwined me.



Thank you Selma Blair - #YesWeCane

Dear Selma,

You are such  a trooper.

Showing up during a flare up and rocking the red carpet.  Total baller.  We love you Selma!

Folks may not realize just how important your decisions and actions are for us living with MS.  Sure, we’ve had many celebrities in the past tooting their MS horn.  And we’ve appreciated all of them.

But to see someone, living in a relapse, experiencing dysphonia and other MS symptoms, walk the red carpet during the 2019 Academy Awards Vanity Fair party is just the best ever.

And, what makes it even more special is your positive attitude.  Your neurologist said you have about a 90% chance to return to normal.  Stay positive and focused.

Everyone with MS responds differently to the disease and to treatments.

Seventeen years ago, I could not walk or see unassisted.  I looked like I had consumed several martinis by 8 AM.

But you know what?  After perseverance and taking care of myself, I have recovered from many of my earlier symptoms.   It’s not easy, this day to day management of MS, but its doable.

Be easy on yourself and be compassionate toward your MS.   Watch you diet and reduce modifiable risk factors.

Some of my tips for newly diagnosed are here:  Tips for Newly Diagnosed with MS

And most important - reach out and ask for help if you need it.  It’s so easy to isolate with MS, but today let’s focus on sharing our stories and using them to help others.

You, my dear, are a rockstar in so many ways.   Take care and know that there is an entire MS community here for you if you need us.

And remember, #yeswecane and  #takeTHATms!

Best wishes,

Caroline Craven
@thegirlwithMS

If you missed Selma Blair on the red carpet - check it out:


Seeking Experts and Finding Treatment Answers

This blog post is sponsored by Med-IQ- working together to improve the lives of those living with MS

Treating multiple sclerosis (MS) takes more than a drug.  It’s a lifestyle change combined with teamwork.  These changes have made a huge difference in my life and I feel this information can help you live better. By combining self-care with guidance from medical professionals, patients are finding better ways to manage their MS.  

Health care professionals provide medical advice and recommendations.  Self-care empowers patients by helping them take charge of their lifestyle.  

Having access to current research, scientific findings, and professional expertise can make a difference in how health care professionals treat their patients. 

This is one reason why I chose to work with Med-IQ, an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, other health care professionals.

The second reason is because Med-IQis helping share my stories with those that can help others - the health care professionals who treat patients on a regular basis.   

The more our medical team understands and knows what we are living with, the better they can serve and help those with MS live a better life.  
They know the medical tools.  We know our symptoms.  Together we can make a difference!

Symptoms Versus Disease


There is strong evidence that treating MS as early as possible has its benefits.   

Whether you are newly diagnosed or living with MS for years, the question about which treatment is best never ends.  

MS is a complicated illness.  There is the demyelination of the nerves and the symptoms that result from this nerve damage.  There is no cure.  

But MS is more than the disease.  The resulting symptoms can cause havoc on someone’s quality of life.  

Because of the loss of myelin, nerves short circuit and do not communicate as they should, resulting in a broad range of symptoms such as extreme fatigue, pain, spasms, numbness, tingling, cognitive issues, bladder problems, vision problems, and more.    

Doctors may prescribe a variety of drugs to prevent future occurrence of the symptoms and help you live better. But, many of these drugs have side effects or are not tolerated by some patients.  

DMT Basics 


Today there are 15 disease-modifying therapies (DMTs) for MS patients, varying from less aggressive forms to bulldogs that have hefty side effects.  They are FDA-approved, clinically tested treatments to help slow down the progression of the disease and its associated disabilities. But which one is right for you? 

DMTs are designed to reduce inflammation by using a variety of factors that affect the immune system.  The hope is for fewer relapses, less severe relapses, slower progression, and reduced disabilities.  DMTs are notdesigned for symptom management.   

DMTs are divided into categories based upon route of administration: injectables, oral drugs, those taken intravenously with an IV.  The drugs range from less aggressive drugs with fewer side effects to aggressive medicine with more risks.  

The 15 approved DMTs as listed on the National MS Society’s website: 

Injectable
Oral
Intravenous

You can find a list of these medications on the National MS Society’s website, as well as risk and safety information for each (DMTs). 


DMT Risks and Side Effects 


It is known that treating MS early and aggressively has its benefits.  But how aggressively should it be treated?  

With the increased amount of aggressive MS treatments come greater risks and side effects.  Liver damage, hair loss, and even death may occur.  

In order to best minimize risk while attacking MS, it’s necessary to be in open communication with your doctor and nurses about the medicine, your lifestyle, your habits, and the risks you are willing to take.  There are options.  

Three Habits of a Proactive MS Patient

These three habits can support you in managing your MS.

1.     Create open communication with yourself, your family/friends, and your doctor and care team.  
2.     Attend doctor appointments and use MRIs & other measurement tools to track disease activity.
3.     Practice self-care: Love yourself with healthy actions.

Open Communication


It’s crucial that you are able to talk comfortably with your health care providers to find the best combination of medicine and to help minimize risks.   
  
Do you drink?  Smoke? Take your medicine on a regular basis? 

Scary as it may seem, being honest with your doctor and care team will provide the best outcomes.  This will only come if you are honest with yourself.  

While advances in research are getting closer to finding targeted drugs for individuals, at this time it becomes a trial and error game.  And this can be difficult.  

Be patient and kind to yourself during this time.  Be open with yourself and your doctors.  Ask questions, be smart.  Together you will find the right solution!  

Self-Care 


Every person is different and reacts differently to medicine, but there are actions one can take to minimize MS symptoms naturally.  

This is time to bring in self-care.  While the DMT is fighting your disease, bring in your own actions to fight thebattle.  

Take control of what you can: eat healthy, stop smoking, exercise, and practice life skills to manage stress.  

MS patients have a harder time with their disease when other comorbidities occur, such as diabetes, obesity, and high blood pressure.  The better we can manage our own health, the better chance we have for controlling MS.  

Finding Quality of Life

MS is a manageable disease.  Through teamwork, honesty, and action, patients’ lives are fulfilled.  Quality of life is increased.  

Consult with your doctor.  Talk with family and friends.  And check out reliable sources of information like those listed below.  

And above all, know that you have this - that you are going to take action and do the best you can. 

That together, we are going to say, #takeTHATms!  


Resources

b.       Mayo Clinic 


Take the Survey

Help us learn more about your experience with MS and working with your care team experience by taking this survey.  The survey, which includes more education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.  Your responses to these survey questions will provide Med-IQ with important information about your experiences with MS treatment and your care team, which will help us develop future educational initiatives for doctors to improve MS care.

The surveywhich includes further education on the topic, will take less than 15 minutes and upon completion, and you will be entered into a drawing to win 1 of 3 $100 VISA gift cards, with a total prize value of $300. 

The emails and names will only be used for awarding the winner.  They will not be kept!  



The information provided through this activity is for continuing education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient’s medical condition.

Join the fun and #takeTHATms!


#multiplesclerosis #livebetter #spon #takeTHATms!



I was compensated by Med-IQ through commercial support from Genentech to write about MS.  All opinions are my own.

MS and Medicare - a guest blog post

Does Medicare Cover Multiple Sclerosis?

Multiple sclerosis, or MS, is a widespread and oftentimes disabling neurological disease that affects about 400,000 people in the U.S. Each week, 200 people are diagnosed with MS, most of them women. Although it can occur at any age, it’s most often diagnosed in people between the ages of 20 and 40. 

It’s almost impossible to predict how multiple sclerosis will affect a particular person. About 20% of MS patients have what doctors call a “benign” course of the disease. These individuals have few, less severe symptoms, and the disease progresses slowly. About 15% have the most aggressive form of MS, with steadily progressive, severe symptoms and few or no periods of remission. 



As you’d imagine, treatment for multiple sclerosis is very costly. Of all chronic diseases and conditions, only congestive heart failure costs more to treat on a yearly basis. On average, medical treatment for a person with MS costs between $8,500 and $55,000 per year. 

If you or someone you care for has multiple sclerosis, and you rely on Medicare for your health insurance, here’s what you need to know about your coverage. 
How is multiple sclerosis diagnosed?
Unfortunately, there is no specific “multiple sclerosis test.” If your doctor suspects MS after reviewing your symptoms and doing a physical exam, she will likely order one or more of the following tests to confirm the diagnosis:

● Blood tests. Although your doctor can’t diagnose MS from a blood test, she can rule out other conditions that might be causing your symptoms. 
● Spinal tap. MS causes known abnormalities in spinal fluid that can be identified by a pathologist to confirm the disease. 
● MRI of the brain or spinal cord. Multiple sclerosis can be diagnosed by the presence of sclerosis, or lesions, on these structures. 
What Medicare covers:
Medicare covers all medically necessary doctor visits and tests your doctor orders to diagnose multiple sclerosis. Part A provides inpatient hospital benefits and Part A covers outpatient medical. Most of the tests are done on an outpatient basis, which means they are covered by Part B. 

Medicare Part B pays for 80% of covered services after you first pay an annual Part B deductible. This deductible is $183 in 2018. 

You also pay the other 20% of the allowable charges if you have Original Medicare. There is no annual cap on how much you might spend for your share of Part B expenses.  So, many individuals with Original Medicare also have a Medigap plan. 

Most Medigap plans cover the 20% coinsurance under Part B that you would normally be responsible for. If Medicare approves a claim and pays its 80% share, your Medigap plan will cover its share, as well. This leaves you with little-to-no out-of-pocket for many services, depending on which Medigap plan you choose.

You can choose from 10 standardized plans in most states, and many of them also cover things like deductible and copays for hospital, outpatient and skilled nursing facilities.
You can find a list of plans and what each plan covers here.
How is Multiple Sclerosis Treated?
There is no cure for MS; treatment focuses on managing the symptoms and preventing disease progression. 

There are three types of MS:

● Relapsing-remitting MS (about 85% of all diagnoses). This type has well-defined periods of disease activity and worsening symptoms followed by periods of remission. 
● About 50% of people with relapsing-remitting MS go on to develop a more aggressive form of the disease known as secondary-progressive MS within 10 years of diagnosis. 
● Primary-progressive MS (about 15% of all cases). This type of multiple sclerosis steadily progresses without any periods of remission. 

Treatment generally focuses on three areas: managing an active MS attack or flare-up, slowing the progression of the disease, and managing the signs and symptoms. 
Managing flare-ups
During an active MS flare-up, you may be given corticosteroids, either by mouth or IV, to reduce nerve inflammation. 

If your symptoms are particularly severe, or aren’t responding to steroids, you may have plasma exchange, or plasmapheresis. This is an outpatient procedure that exchanges the liquid part of your blood, known as plasma, for plasma from a donor. You may also get a plasma substitute during plasma exchange. 

Plasma exchange works by removing the proteins in your own plasma that cause MS attacks and replacing it with “clean” plasma from a donor or plasma substitute. 
Slowing disease progression
There are several prescription drugs used to slow the progression of the disease. If you have primary-progressive MS, the only FDA-approved medication is Ocrevus. This drug is usually given by IV infusion in an outpatient infusion center. 

For relapsing-remitting types, there are several prescription drugs including beta interferons, Copaxone, LemtradaGilenyaAubagio, and Tysabri, among others. Some of these medications are given by IV infusion, some are injected under the skin or into the muscle, and some are taken by mouth. 

Managing your symptoms
Treatment to manage the symptoms of MS may include physical therapy to strengthen muscles and improve mobility, and prescription medications to relieve pain and reduce muscle spasms. 
What Medicare covers:
Multiple sclerosis medications given by injection or IV infusion in a doctor’s office or outpatient setting may be covered under Part B at 80%.

Medically necessary outpatient treatments such as plasma exchange are covered under Part B, too

Part B also provides physical therapy that your doctor orders to help manage your MS symptoms. In prior years, there was an annual limit, or “therapy cap,” on the amount Medicare would pay towards physical and occupational therapy. These no longer apply in 2018, although Medicare may review your health records once your therapy bills reach $3,000 to make sure your treatment is medically necessary and qualifies for coverage. 

Of course, if you are hospitalized for multiple sclerosis treatment, your care is covered under Part A at 100% for the first 60 days after you’ve met your Part A deductible. This deductible in 2018 is $1340.

Some individuals opt to get their Medicare coverage from a private insurance company instead of Original Medicare. These are called Medicare Advantage plans.  If you have Medicare Advantage, your plan covers the same covered services asOriginal Medicare. Instead of 20% coinsurance amounts, however, you may pay a flat copayment amount for your care.Each plan varies and you should review your plan’s Summary of Benefits to see what your cost-sharing responsibility is for various services.

Oral medications you take at home are almost never covered under Part B. However, Medicare Part D is a voluntary prescription drug program that you can enroll in to help cover the costs of your retail outpatient medications.

If you have Medicare Part D coverage for prescription drugs, either as a stand-alone plan or as part of your Medicare Advantage plan, your multiple sclerosis medications are generally covered. Depending on your plan, you may have an annual deductible and/or copayment amounts when you fill a prescription. All plans have catastrophic coverage which helps to limit the total dollar amount that you can spend in any given year.
Does Medicare cover medical equipment I need for multiple sclerosis?
Some people experience mobility problems as their disease progresses. Your doctor may recommend a cane, walker, wheelchair, or other device to help you get around. You may also need equipment in the home such as a hospital bed, bedside commode, or other assistive devices. 

Part B covers durable medical equipment (DME) at 80% of the allowable charges after you meet your Part B deductible. You may need to get your equipment from suppliers specially contracted with Medicare in order for your benefits to apply. It’s easy to find these providers on Medicare’s website using their Find a Supplier tool.

Danielle K. Roberts is the co-founder of Boomer Benefits, where she and her team help Baby Boomers navigate Medicare.