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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Anniversary

1 Year

Anniversary (noun)
the annual recurrence of a date marking a notable event

April 15 is an anniversary and birthday. It’s been nine years since my multiple sclerosis diagnosis, and a year since this blog was launched.

Nine years since diagnosis and that means almost TEN years since symptom onset. Some days seems like it was a lifetime ago and others, just yesterday.

I was talking to someone a few days ago and I realized it’s hard to even remember a time before MS, before the tingling, before the numbness, before the fear. BUT because there are so many more good days now, those too often fade into a blurry haze of the past.

Last year someone said to me “you just don’t have time for a flare-up this year” and I proceeded to walk around with that in my head EVERY day. And I didn’t have a flare-up. Now I’m not a big woo person, but I guess sometimes the power of suggestion is very powerful. What also REALLY helped was our cold, long winter. It made me EXTREMELY happy and healthy. Ideally I would love to never have spring and summer and live somewhere that it’s cold or cool all year round. And then I remember I’m 110% a NY girl.

I want to thank family, friends, and strangers who support me and have embraced this blog. I love seeing where the readers come from, near and far. I hope that one day in my lifetime this blog won’t be needed, but until it is, thank you, thank you, thank you for looking.

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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.

Different

different51

Different (adjective)
not the same as another or each other; unlike in nature, form, or quality

Some say it’s not good to look back, but then how do we learn from our past?

For the last three weeks, I’ve been walking around scratching my head wondering what I did differently last year that didn’t result in having a flare-up. Why you ask? Be thrilled that it didn’t happen you say? BUT I want to know why, so I can continue doing what I did last year to avoid one this year, and hopefully in the years to come.

I also know that it’s likely impossible to come up with anything more than anecdotal. Some things I did differently last year:

  • I started a business and am working with people I absolutely 110% respect and learn from all the time, which leads to my better well-being even during stressful times of deliverables. And I look forward to working and helping the team to be successful.
  • I avoid public transportation during commuting hours. While it’s increased expenses, I believe it’s kept me healthy and less stressed, especially since this is the worst flu season since 2009. Or it could just be that my immune system works so well it can fight H3N2 more effectively than the average person.
  • I do quite a bit of walking, but haven’t been in a gym in months due to bullet 1 above. Yes, I know, not the best, and I’m slowly working it back in, but it’s definitely different.
  • I addressed the mental health side of living with multiple sclerosis in late 2016. In my head I knew that it comes with the disease, meds to treat it, and just really living with a chronic illness. I didn’t necessarily underestimate it, but most of the time it was due to having a flare-up and the meds to treat it. Treating your brain health is no different from any other part of your body.

While I will likely never know what I did differently, if anything, I’m just so glad that I didn’t. Which isn’t to say I don’t have symptoms most days, but it’s way different from having an acute multiple sclerosis relapse, which leaves you in pain, exhausted, and wondering if you will ever recover.

Today whatever that “different” is, it’s working. Today I feel good, happy, and productive.

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Year

Year

Year (noun)
the period of about 3651/4 solar days required for one revolution of the earth around the sun

The greatest teacher failure is – Yoda

365 messy opportunities
365 days of uncertainty
365 days of wonder

What will you do with your next 365 days? When people ask me what it’s like to live with multiple sclerosis the first thing that comes to mind is add more uncertainty into a life that is already uncertain. Sometimes it’s mundane, sometimes it fucking sucks, and sometimes opportunities arise that wouldn’t otherwise.

At the beginning of this year it definitely fucking sucked, but 364 uncertain days later, well, it’s not just ok, but it’s pretty amazing. It’s easy to focus on the diddints, as in I didn’t win the lottery, I didn’t lose those 10 or 50lbs, or I didn’t master the art of baking, BUT…

I DID start my own business, I DID travel overseas to see good friends and to new places, I DID spend time with people I love, I DID start this blog and accompanying social media, I DID start a great fitness routine (more after the New Year!), I DID create new memories, and I DO look forward to the next 365 adventurous days to come.

I wish you good health, happiness, prosperity, and loads of DIDs for the New Year.

PS – And I DIDN’T have a flare-up this year. I was just too busy DOING the above DIDs. And that’s a good DIDN’T.

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Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

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