Fear

Fear

Fear (noun)
an unpleasant often strong emotion caused by anticipation or awareness of danger

There is so much to fear on a daily basis, it’s a wonder most of us can leave the house on a daily basis.

There are the types of fear that seem to lurk in the background, like dark spaces, spiders, snakes (both do I loathe the latter two!), and other things that go bump in the night.

Then there is the fear of speaking in front of people or going on a stage or singing in front of people. It’s interesting to me that when I speak with people who act or sing regularly about their ability to make themselves so vulnerable, I’m often met with responses that suggest low or lack of self esteem, which seems like such a dichotomy. How can a person willingly make themselves to vulnerable, and yet fear that very act of vulnerability at the same time.

The fear of losing loved ones and close friends, from long drawn out diseases, to sudden deaths, or just old age. The fear of going on without these people in your life.

We are moving into one of my favorite seasons, fall, although winter is my very favorite-est. And with that comes the fear of having a flare-up and living with a progressive, neurological disease can play tricks on your mind. The anxiety can help drive that fear. Different treatments like CBD or anti-depressants/anti-anxieties can help, as can exercising. Fortunately I’ve found a combination that works for me. It doesn’t stop fear from creeping in at highly inconvenient times, it just means that when it does, I have the tools and resources to help my brain realize that it is playing tricks on me.

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Stable

Steady Firmly fixedStable (adjective)
not likely to give way or overturn; firmly fixed
not deteriorating in health after an injury or operation
sane and sensible; not easily update or disturbed.

I call it MRI Monday, which fortunately included results on the spot. and it was all STABLE. As noted above, stable can have many meanings. It can be firmly fixed, like roots that grow into the ground or a cement foundation. Or it can refer to being sane and sensible (whatever that means). But in this case, stable means the multiple sclerosis isn’t progressing, at least clinically on high powered imaging. And because I feel better than I have since before the diagnosis nine years ago, I’d say it’s better than stable.

Interestingly my neuroradiologist was more concerned about degenerative disc disease which has improved as well. And I’m attributing that to the awesome Pilates I’ve been doing since March (stretching & lengthening!).

Though to keep things in perspective, it doesn’t mean without symptoms, but these days those are pretty minimal as well, as long as I keep stress DOWN, and the air conditioning UP.

Stay cool in these deep days of summer!

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Happy

Happy

Happy (adjective)
feeling or showing pleasure or contentment

These days I am finding myself happy (and healthy) and sometimes it’s hard to say that out loud for fear the other shoe will drop.

In December 2016 I started taking sertraline for depression. It was the first time I had a really bad, spiraling night, that wasn’t related to the multiple sclerosis (but maybe it is because it’s a central nervous system disease), or being treated for a flare-up. I recognized that I needed help. I reached out to a long distance friend who helped me for as long as I needed it. I went to bed and the next day I went to see my neurologist. And when it came to treating this issue, I couldn’t care less about any stigma that society has about brain health. I didn’t think twice about treating the multiple sclerosis or taking medicine for asthma growing up. My only issue was worrying about side effects. And although I didn’t turn purple, boy did I spend weeks insanely nauseous while titrating up to the full dose.

Fast forward 1.5 years later, and about a month ago I realized the sertraline (and probably age) is likely slowing down my metabolism, which already works backwards, so I decided to split the dose in half. I did this on my own without consulting my neurologist, because I know my body. I also now know how I should feel most of the time (say 80/20 rule). And I can recognize the shit for what it is, and frankly most of the time I just don’t care about stupid stuff anymore. I think the 20%, as Gaga would say, Baby I was Born This Way. And you know what? I’m good with that.

So a bit of a long about route to say most days I wake up happy. I enjoy what I do professionally (and the people I work with) and am having wonderful life experiences (on my own and with loved ones). I feel better than I have since before I was diagnosed with multiple sclerosis nine years ago. I’ve been so leery about saying the latter out loud, especially with my once every 18 to 24 month MRIs coming up next month. Feeling physically and mentally great also allows me to be the best I can be for the people I love and care for as well.

I spend way less time these days wondering when the shoes are going to come tumbling and I happily give the middle finger to the shit that just doesn’t matter.

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Choice

Choice

Choice (noun)
an act of selecting or making a decision when faced with two or more possibilities

Today is the 9th anniversary of starting on treatment for multiple sclerosis. This amounts to about 486 injections, minus illness, birthday week, and travel. Sometimes it feels like it’s been forever, since I no longer really remember a time when I didn’t feel MS. Some weeks it’s matter of fact and others it’s hard. Fortunately the last 1.5 years, it’s been 90% of the former and maybe 10% of the latter.

Statistics say that there are around 1m people living with MS in the United States, and almost 3m globally. But since MS is not required to be reported, we rely on data that is often manipulated, especially in the U.S., since it relies on diagnostic codes, which are often fudged in order to gain insurance coverage.

In 2018 we are lucky to have 16 disease modifying medicines for MS, with more to come. Just a short 20 years ago, people were sent home with steroids (maybe) and told not to move. Also, there are a host of meds for symptoms and side effects of the disease.

What we still don’t have is a cure. I hear this about MS all time, but I don’t really listen since I know how complex this neurological disease is and certainly not easy to dissect. That said, I do believe there can be better targeted treatments with less side effects. Better (and more) research in stem cells from your own body, rather than having to go through the toxic process of obliterating your immune system, like for people living with cancer.

It’s such an odd thing living with a disease that people can’t see and one that each of us experiences in very individual ways. As they say, when you’ve met one person with MS, you’ve met one person with MS. #snowflake

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Birthday

birthday_balloons

Birthday (noun)
the anniversary of the day on which a person was born, typically treated as an occasion for celebration and the giving of gifts

On the eve of the close of another trip around the sun, I can’t help but reflect on the year gone by. Why is it as I finally get used to saying the previous number, the next number is jamming itself up against my face?

Staring at the last year of my 40s is so incredibly odd. It’s almost as if I wish I were turning 50 to get it over with already. At least then you get an AARP card and loads of discount. Forty-nine feels a little like Florida, or god’s waiting room as my people call it.

I find it interesting when people talk about the date of their diagnosis as being a rebirth of sorts. I still believe in celebrating the day I was born, but my diagnosis day is more about showing a big middle finger to MS and saying you ain’t takin’ me down.

So as I reflect on another trip around the sun, I look back on the good, learn from the challenges to inform the future, and embrace this messy, crazy adventure called life.

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Awareness

Awareness

Awareness (noun)
knowledge or perception of a situation or fact

Speaking out about multiple sclerosis to others who may be dealing with this disease is actually helpful to me as well as, I hope, to others. It builds community, helps bring awareness to MS, and strengthens the MS movement that will ultimately lead to the end of this disease. – Teri Garr

March is Multiple Sclerosis Awareness Month. I like to say that MS is not all, but rather a part of me just like anything else. But like Teri Garr, I do feel like being able to talk about living with MS helps me, and hopefully others to understand the disease.

Some facts about MS that you can use to help others understand

2.3m people around the world are said to be living with MS, and 400,000 of those in the    U.S., though most people believe that the number is likely closer to 1m in the U.S. and  double the former figure world-wide. Unlike communicable diseases, MS is not required to be reported, so we have to rely on rigged insurance reporting and databases that we know aren’t accurate. And accurate reporting = more funding for research and a cure.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central    nervous system (brain and spinal cord). Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

MS is thought to be an immune-mediated disease in which the body’s immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the central nervous system.

The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted.

MS is not contagious

There is no cure for MS

People with MS tend to live, on average, 7 to 10 years less than someone without it, though they say you don’t die from MS, but rather complications of it. And have 10 years less of employment due to physical impairment.

People with MS are twice as likely to be underemployed, underinsured, and food insecure. The treatments and meds to manage the disease are extremely expensive, and “budgeting” for a relapse is impossible.

Your help can ease the burden for people living with MS. If you can’t donate money, small things like helping a friend preserve their energy, by offering to clean their house or do the laundry, is greatly appreciated (I surely wouldn’t turn it down!). Or if you can, offer to employ people living with MS. Most of us are still highly contributing members of society. We are not our disease, but rather people living with one.

Travel

Travel

Travel (verb)
make a journey, typically of some length or abroad

Lately I’ve been traveling (by air) extensively again, both in the U.S. and abroad, for fun and business. I thought these days were behind me. Being diagnosed with multiple sclerosis I didn’t think I could handle the hours needed to do it. Not only do I do it, but I excel at it once again. I think the exhaustion is more about being older, than having MS.

That said, some tips and tricks how I make air travel easier for me.
1) I slowly pack the day before. This has been true since well before the MS. If I pack too far out, I take too much.
2) I take a car service instead of public transportation. This helps to preserve my energy to deal with the airports and flying, which are both exhausting.
3) I arrive early for domestic & international flights to allow for loads of time to get through security. I have both TSA pre-check & global entry. If you need help, ask for it. If you need a wheelchair, ask for it. There is no shame in preserving your energy.
4) If the lines are long I ask to go to the front for medical reasons. Each airport and security line has their own ideas of what sympathy looks like. I find TSA to be short on it for sure.
5) I ask to pre-board due to medical reasons. While I don’t need help walking, not having to board in a crowd cuts down on anxiety, which also reduces stress levels. Anything I can do to tell keep calm, makes a huge difference to getting to where I need to go and being able to function at 100% when I do.
6) If I’m going to be away for more than a night or two, I take one of my own pillows. Sleeping in a hotel, however nice, is precarious as best. Weird noises, varying mattresses, errant digital lights. Anything I do to help sleep better, keeps the MS symptoms at bay. Plus as a Taurus, I much prefer creature comforts. And if it doesn’t impact anyone else, why not!

It took me a long time to be able to ask for concessions, because karma is the great equalizer. I know many people living with this disease who are much worse off, and I thought that I needed to “do it like everyone else,” but then I realized, it’s just like using air conditioning in December if I need it. The more I stand in long lines, the more tired my legs become, which impacts the rest of my trip.

So in the end, I did what I tell others to do. Be kind to yourself and ask for help. It doesn’t make you weak, it makes you strong.

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