Insurance...ugh.

As everyone knows, dealing with insurance companies isn’t easy. But when you have MS or another chronic illness, it can be downright challenging.

MS is an expensive disease. The treatment of MS typically includes prescription drugs and various forms of rehabilitation, such as physical therapy, speech therapy, and the use of mobility aids. A study published in May 2013 in the Journal of Medical Economics found that the total cost of healthcare for MS ranged from about $8,500 to more than $50,000 per year during the period studied (1999 to 2008).

I am lucky enough to work in a job that offers benefits or ‘job-based coverage’ so I have the option of paying my insurance directly out of my paycheck. It’s not cheap but I’m covered. Simple enough, right? I have insurance through United Healthcare (UHC) so I will get what I need. Well…

In 2014, I fell and started relying on my scooter more and more until I wasn’t walking at all because it was unsafe. The scooter is not meant for living in so it was time for a power wheelchair. I can’t walk anymore ergo get a wheelchair. After going through the hoops insurance requires, my first attempt at acquiring a wheelchair was denied. We had asked for more than insurance allowed. The wheelchair company (Numotion) wasn’t any help. Neither was UHC. My husband volleyed between Numotion and UHC and got what we needed. Because he persevered, I had a wheelchair in six months. Believe me, all other repairs and improvements have been a struggle as well.

I have also had to fight UHC on medications that were not deemed medically necessary or where the pre-authorization was no longer good. What do I have to prove?

I am terrified of what will happen if my wheelchair dies. Or if I am ever caught without my medication. What happens when you are disabled and your insurance falls through? If you have insurance and your insurance just flunks out for a bit, well, you’re left hanging, hoping, and relying on them to get it right. Eventually. I never thought that an insurance company would be the one to determine the quality of my life.

This system is not good enough.  Until it is fixed, you will need to be a strong, persistent advocate to obtain the help that is needed.

Caregiver as case-worker article at The Mighty

What’s New for MS

Research on MS continues to advance. Researchers are making headway in virtually every priority funding category identified by the National MS Society: stopping MS, restoring what’s been lost, and ending the disease forever. Researchers are closer to understanding what causes MS and how to effectively treat and prevent MS than ever before.

Here is a video on recent developments from MSWorld.org:  Overview of 2016 MS Research.

For a broader view of the history of understanding MS, the National MS Society provides an interesting document entitled “Critical Milestones for MS” here: Timeline of Progress in MS Research.

FINALLY there are a number of studies taking a look at the relationship between diet and MS. If I never hear "Have you tried ...? Or my friend only eats ___ and feels great!" it'll be too soon. But if there is actual research then that's a different story. Right now there is not enough evidence to recommend one diet over another. However, most of the diets agree on the same food items that should be cut out. Foods to avoid are those that:

·         Are highly processed

·         Have a high glycemic index (GI)

·         Are high in saturated fat

In general, the diets tend to recommend eating less fatty red meat and more fruits and vegetables. Keep an eye out for the results of these studies. The National MS Society reviewed various dies here: NMSS Diet and Multiple Sclerosis.

Here’s to a happy and healthy new year!

MS and My Hands

MS has taken a lot from me but the one thing that surprised and angered me the most is that MS has taken the use of my hands.

Multiple sclerosis can impact hand dexterity, coordination, and strength because of the effect it has on the central nervous system. This is another form of spasticity. I experience a tightening of the muscles in my forearm, which causes the hand and fingers to turn in. I often have a disabled look to my arm and hand. I call it my “dumb” limb. My fingers curl inward and I keep my arm close to my body. There has been a change to my arm’s natural resting position. I can no longer write or reliably button a button, and my typing has become more of the hunt and peck variety. It’s a dexterity and fine motor skills issue; my fingers do not move the way I want them to. It is actually hard NOT to automatically curl my hands. I have to consciously think about unbending them

I have difficulty with activities such as picking things up, maintaining a hold on items, and have trouble controlling eating utensils. I need help cutting my food into manageable pieces or I just spear the whole damn thing on my fork.

Other than basic motor skills, I have lost a lot the ability to do some of my favorite hobbies. I have always been a creative person. I loved being crafty: beading, creating journals/scrapbooks, keeping a book journal of books I’ve read along with writing down my favorite quotes. Now I have trouble holding a pen to write my name. I need oversized Sharpies to write a few words and I have to concentrate on each letter. My grip strength is poor (an OT told me it is about 25 pounds per hand – which she helpfully characterized as not enough to strangle a man!)

While there are some fixes -- I use speech-to-text software, have some grips that make holding silverware a bit easier, use an ergonomic mouse, and mostly rely on Sharpies to write – more and more, I feel trapped in a body that refuses to cooperate. 

How MS changed the Holidays

The holidays can be stressful for everyone and especially on those of us with multiple sclerosis. Though you can’t control everything that happens, planning, communication, and awareness go a long way to a wonderful holiday season.

For 16 ½ years, my husband and I have lived on the West coast while our families live in the Midwest. This meant traveling for Christmas. It was worth it to see everyone even though this meant extra stress on our part We would fly into Minneapolis and spend a few days with my husband’s family and then we would drive three hours to Wausau, Wisconsin to visit my family. We have always enjoyed time with our families and felt the time away from “real life“ was worth it.

After my diagnosis in 2011, travel became harder on me. In 2013, we visited the Midwest twice before Christmas and decided to stay in Oakland for the actual holiday. It was tough not seeing everyone but I had to admit cutting out the holiday travel was nice. As my disease progressed, and I found myself in a power wheelchair, travel became even harder. The airports were hard to navigate and communicating with the airline personnel was complicated. I could no longer walk and felt uncomfortable being strapped into the small aisle wheelchair. Not to mention dealing with the tiny airplane bathrooms!

Now we stay here for the holidays. Cutting out the stress of travel, the worry about the weather, and the unpredictability of both have helped me. We’re still figuring out our new Christmas traditions. We have gone out for dinner on Christmas Eve with friends, stayed in and put together puzzles and played games, watched Christmas movies, Skyped with family, and prepared special meals. 

But that’s life, not only with MS, we change and adapt. And we raise our glasses to a healthy, bright, and happy new year!

Life in a Wheelchair

I never really questioned my transition from forearm crutches to a scooter and then to a wheelchair. My legs were failing me and dragging myself around on crutches was exhausting. We rented a scooter and “aha!” I could get around again. When I started relying on the scooter more, I needed more comfort and support and I got a power wheelchair. Easy decision. I was conserving energy. But I didn’t realize this would change my life so much.

First, tons more people remember me than I remember them. It's like a low level of fame. It also becomes your defining characteristic. I’m the redhead in the wheelchair.

  

Second, everyone stares. Once, when I was shopping in my scooter, I heard a woman say, “Oh! That looks fun!” Yeah, lady, it’s just like a go cart zooming around. By the way, walking looks fun too.

If they aren’t staring, they’re purposefully trying to look away, or they have their gaze set on the few feet above my head where I’m sitting, and that’s even worse. Like hello, I’m kind of hard to miss. Or, I’m invisible. I have to shout at people who walk down the street, heads bowed, looking at their phones. I usually just give a “Hey!” and people jump out of my way like I’m on fire. I swear I will run smack dab into someone someday. It’ll be awkward. Or, even worse, I will be hit by a car that was in too much of a hurry to notice me in the crosswalk. Once I made eye-contact with a driver and I could tell he was calculating how fast he needed to go to cut me off – which he did. What the hell, man?! Note to drivers everywhere: look before turning right on red or hanging a left on to a one-way street and respect right-of-way. I might be there waving, always on defense, aware. 

And another thing: Have you ever noticed the cracks, bumps and gaps in the typical sidewalk?  Or that not all crosswalks have a clean cutout? Crossing the street is an adventure in itself.

I don’t want you to feel sorry for me as the poor disabled girl. I don’t want you to look at me as this inspiring hero. I want you to realize I’m just a person, now at about 4 and a half feet tall instead of 5 and a half.

Life with MS

Things will never be the same. I know this. After five years, you’d think I’d be more at peace with my diagnosis but it’s hard living with this disease. Being told you suffer from a condition that has no cure and is unpredictable, will change your life as you know it.  There are very few certainties to be found anywhere in any aspect of this disease.

With an MS diagnosis also comes loss. After a bad day, I find myself feeling sorry for myself and grieving the life I once had. On these days it is not hard to work myself up into a frenzy of sobs and tears. How do I incorporate the reality of the disease into my life without letting it dominate my life? Does MS change who I am? Can I be me with MS?

Acceptance is an evolving, continuing, and often repetitive process. Acceptance is not an event or a task that once achieved is completed. There aren’t any set steps to take to get from diagnosis to acceptance. I often find myself forgetting this.

There is a whole world and a whole life beyond multiple sclerosis. We did not choose to have MS, we didn’t do anything wrong to get MS, MS just happened. Now all I need to do is accept it.

MS-Related Fatigue

One of the most difficult symptoms for those without MS to understand is fatigue. MS-related fatigue is a very common symptom of MS and is different from regular fatigue. It generally occurs daily and can occur in the morning despite a good night's sleep. It can worsen during the day and make it difficult to do normal activities; it can even make you feel like you need to immediately stop what you are doing and lie down. Limbs may feel heavy and hard to use. Cognitive fatigue or “cog fog” may make it difficult to follow a conversation or think of words or numbers. Because it is invisible and unpredictable, it makes it harder for others to understand and appreciate.

MS-Related Fatigue is a pretty new symptom for me. Within the last year, I find myself so unbelievably tired that I can fall asleep by just putting my chin on my chest. Literally nodding off. This level of fatigue goes beyond what I used to think of as “tired” – it’s a full body and mind fog.  A good night’s sleep and a nap during the day can’t remedy it.

Thankfully, there are some options to help manage fatigue. Medication, complementary therapies, rehabilitation and exercise can help manage fatigue. So can conserving energy. Following these tips may help:

1.       Work closely with your MS healthcare providers.

2.      Avoid heat exposure.

3.      Take good care of yourself.

4.      Combine exercise with mindfulness.

5.      Take breaks.

6.      Discuss medication options with your doctor.

7.      Simplify your life.

If you have MS, it’s not your fault that you are tired beyond imagination. Acknowledge your fatigue and recognize that it is a symptom like any other that may be treatable. Rest and take breaks when you need to and don’t feel guilty about doing so. We need to conserve our energy and manage our fatigue. Finally, prioritize listening to your body and taking care of yourself.

MS in Focus Magazine: Fatigue in MS