Tag: multiple sclerosis

Anxiety

Anxiety-600X600

 

Anxiety (noun)
a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome

Today started out with loads of things on my to do list in advance of leaving for a business / personal trip tomorrow morning. Anxiety had different ideas for what my day would turn into. Anxiety doesn’t give you a reason, it doesn’t make sense, and it’s super inconvenient. Kind of like a drunk uncle at Thanksgiving that everyone just wants to send home, but you can’t quite bring yourself to say see ya later, bye.

It’s probably been years since I’ve had this type of feeling. It wasn’t that kind of anxiety you feel before a talk, performance, or seeing someone you haven’t seen in a long time. It’s the type of dread, and argument your gut is having with your brain, that makes you think, do I need to call / text someone, or is this an emergency room visit.

Anxiety forced me to alter my day to give into it, which made me feel even worse. I want to give anxiety the middle finger and move on from it, but things don’t work that way. I did all of the usual recommended things like rest, listen to a meditation podcast, go for a walk. Barring an anti-anxiety med, which has helped many people I know, I remembered CBD oil (cannabidiol) can help! Et voila, that I can do.

Over the last two hours I’m feeling a little bit better as a result. Anxiety is still sitting on my shoulder, but it doesn’t feel like my brain and gut are fighting with one another anymore. And I can get on with that to do list.

What do you do to fend off anxiety?

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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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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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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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