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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Trust

Trust

Trust (noun)
firm belief in the reliability, truth, ability, or strength of someone or something

As an American there is a lot not to trust right now. Trust in (most) of our government to have our best interests at heart is thoroughly in the toilet. It certainly has brought us together in a way I haven’t seen in decades, but it’s still a scary time trying to figure out who to trust.

Being diagnosed with multiple sclerosis I felt as though my body had betrayed me. I didn’t know my body anymore. I didn’t trust my body.

When you receive life altering information like this it turns your world upside down. Some say you can control it, or let it control you. I would argue that it’s not so simple.

Your body feels different every day. It’s hard to trust that it’s going to to be there for you on a daily basis, to support your physical and emotional needs. And you quickly learn that sometimes it doesn’t, which is extremely frustrating.

Trust in yourself is a different kind of trust, as opposed to putting your trust in others. It’s intrinsic, a gut feeling, and that was gone. In place of fear and uncertainty. We’re trained to deal with the uncertainty of life, or we couldn’t walk out of our front door each day. But this kind of news makes the uncertainty more uncertain.

I’m pretty out there, so when I was telling others about my diagnosis I didn’t worry so much about trusting the outcome. Though I often had it make it ok for others after I told them. You could see the change on their faces as the words came out of my mouth. I had to help THEM trust that I would be ok, especially the ones who knew nothing about multiple sclerosis.

There isn’t a day I wake up that I can forget that I have multiple sclerosis. For a split second, I wake up symptom free, think about the day ahead (usually hit the snooze button), and then remember. Remember that I have a neurological disease.

It’s taken me a very long time for that trust in my body. That it will do what I need, when I need it. In the last few years I’ve learned that it will be more than not. And part of learning to trust it again, is making to work it stronger. The stronger I get, the more I can trust it. And the more I don’t wake up each day thinking will this be the day another relapse happens. And I’m trusting that even if it does, that I can come out ok on the other side.

Organize

organize

Organize (verb)
to form as or into a whole consisting of interdependent or coordinated parts, especially for united action

If there’s one thing that most people know about me, it’s that I enjoy being organized and I really don’t like clutter. Please don’t even get me started about how I feel when I see someone’s phone has a zillion unchecked emails, texts, or messages! I’ve been sought after both professionally and personally for my organizational skills. Now I’m not quite Felix from The Odd Couple, but I suppose run a close second.

This started long before the MS; however, is probably more important now than ever. Being organized keeps me from (mostly) forgetting or losing things and helps with peace and calm in my home. “A place for everything and everything in its place.” [Ben Franklin]

One of the areas that it’s important to be organized is visits to your healthcare providers. People have often complained to me about one issue or another with their doctors and sometimes I respond and ask how they prepared for the visit. Crickets.

In order to get the most out of my healthcare provider (HCP) visits and form a partnership in my care, I created a template document that I fill out, and take with me, to each office visit.

For me the most important part is preparing in advance, including the reason for the visit and questions. This gives you a chance to organize your thoughts and maximize your visit.

The office visit sheet can be used as a reference and to take notes for review later.  This information can either be maintained electronically or in a binder, whichever works for you. When you live with a chronic or acute disease or disorder, it’s extremely important to be organized and have all of your files at your fingertips (test results, CDs of images, etc.).
Of note: you own your medical records! 

Format as follows and link to document [HCP office visit template]

Name complete date of birth
Office visit date

Issues for discussion
bullet points or numbers

Medicines
name, dose, administration, frequency, length of time taking
bullet points or numbers

Vitamins
name, dose, administration, frequency, length of time taking
bullet points or numbers

For more extensive record keeping you can also include family history of illnesses if known.

Keep this information on your phone for ease of access re: emergencies. Bring two copies to the visit, one for you and the other for your HCP.

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