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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Stigma

Stigma concept.

Stigma (noun)
Medicine/Medical – a mental or physical mark that is characteristic of a defect or disease

I’ve been thinking about stigma through most of my career in healthcare communications. Having worked across just about every disease and disorder category you can think of, one of the things we’re often tasked with doing is to help “dispel” stigma around living with diseases. What I’ve learned during the 20 years in this area is that the only people who can truly smash a stigma on its head is someone living with that disease or disorder.

Now herein lies one of the problems with trying to do away with stigma, you have to talk about it publicly. It needs a face. People need to know that stigma is their partner, child, brother, sister, cousin, best friend. Whether it’s with close family and friends or on a broader platform. And in the U.S. at least, if you come out on that broader platform you potentially put your career in jeopardy. I deal with stigma every day whether someone knows I have MS or not. Stigma is all around us. In the media, online, in conversations. Our society favors the able bodied, fit, person.

I’ve seen people in wheelchairs talked over as if the person doing the talking automatically assumes said person in the wheelchair has brain damage and couldn’t possibly understand them. Or better, they shout at them. Now I’m sure I’ve been guilty of this somewhere in my life, but being diagnosed with a neurological disease magnifies those societal blips.

I have a unique story. If anyone has heard the actual way I received confirmation of my diagnosis, they know. It was funny in the moment, and it’s funny now. Combining my experience with living with MS and working in healthcare, I have attained the necessary skills to be able to help people who come after me. BUT I haven’t been able to be nearly as open as I would like due to the fear of said story-telling having a negative impact on me professionally.

Clearly my brain works, no really, it does. And in the past I have gladly accepted that even when I’ve gone through the worst of my flare-ups I can handle doing more professionally and personally then someone without MS. That said, even working in healthcare I couldn’t come out to my managers. There’s that silly stigma again. The idea that I would be looked at as less than if I made a mistake. And most times if I do make a mistake it has absolutely nothing to do with the MS. And if it does, it’s because I’ve worked too many hours and am incredibly fatigued. Under those circumstances everyone makes mistakes.

Another area of stigma surrounds mental health. For reasons unbeknownst to me we don’t treat emotional well-being as importantly as physical. And more often that not, issues with mental health are in fact physical. I don’t know too many people who would ignore having diabetes or cancer. So why do we ignore our mental health? Stigma!

People close to me know I am a total Britophile and eagerly watched Will and Kate get married, awaited both babies with baited breath and have now watched Harry come into this own. Over the last 24 hours he has given interviews detailing that he needed to seek therapy for depression. Remember when he was caught naked in Vegas? Or coming out of clubs in the wee hours? He never fully dealt with the death of his mum and his brother lovingly told him he needed help. When someone of his visibility comes out, especially in the English culture of keep calm carry on, many others feel they can as well.

One of the symptoms of MS is depression. And along with all of the meds to treat the disease and symptoms comes depression. And then you have a flare-up and you’re depressed about that! And then you’re depressed coming off of all of the meds. Screw serotonin! The depression I’d always experienced was either situational or related to being on treatment and follow-up for a flare-up. Until the end of November.

I came home from a grueling day of work and was just spiraling. I stood in my living room feeling as though I needed to head across town to the emergency room where I used to work. I could not stop ruminating. Fortunately a good friend, long distance, over instant message talked me through it. Given this was the first experience I had like this not related directly to meds, I knew medical intervention was a must. This was a Thursday night and Friday I had an appointment with my neurologist for the following Monday. A few days later I started on Zoloft. Hey stigma, how you doin’? Now how can something be a stigma when more than 15 million American adults are living with it?

Those first weeks the nausea was, well,  nauseating. One Saturday night after being out I was wandering the streets at midnight looking for Emetrol for the nausea.

I kept wondering when it was going to “kick in” harkening back to college days. Another friend assured me that I wouldn’t be turning purple or growing a unicorn horn, but that I would “just know.” Part of my fear of new meds is side effects. I would wreck any clinical trial I tried to participate in because I’m the person who gets the side effects. I get side effects no doctor has ever seen before. I’m that person.

Probably about a month into taking it, I started to feel happy. And I mean nauseatingly happy. Like the kind of happy my friends and I would make fun of. Full disclosure, I also started working out every day coinciding with taking the medicine. Fast forward several months and while yes, some say it’s a magic pill (I don’t disagree), but I was also ready for a change. And honestly, it feels GOOD to wake up happy each day. It’s allowed me to tackle something professionally I’ve wanted to do for years (saving that for another post). It’s afforded me the opportunity to start this blog and has cleared my head of “you’re not good enough” and imposter syndrome and most importantly not spending my days hating myself.

I’d like to think this is my little piece of helping to end stigma.

DĂ©but

Beginning

Multiple Sclerosis (noun)
Multiple sclerosis (MS) is a chronic progressive disease of the central nervous system characterized by loss of some of the myelin sheath surrounding certain nerve fibers and resulting in speech and visual disorders, tremor, muscular incoordination, partial paralysis, etc.

The most intriguing part of the above description, for me, is the “etc.” Etc are the moments we live in during our day-to-day. The etc can include buzzing (paresthesia) that resembles a jack hammer, fatigue so crushing you wake up only needing to go back to sleep, numbness from your head to your toes, loss of vision (optic neuritis), issues with bladder and bowel, etc. On the bad days, the etc can leave you wanting to tweeze the hair on your head one strand at a time. The honest people admit it just sucks sometimes.

Currently there are four classified types of MS:
clinically isolated syndrome
relapsing remitting
primary progressive
secondary progressive

I live with relapsing, remitting, which means I can have an exacerbation and then go back to having little to no symptoms. There are also pseudo-exacerbations like how anything above 70 degrees sends me running for cover, but as soon as I cool down I’m ok.

People who live with these types of diseases and disorders can never forget. I don’t wake up in the morning, go through my day and get back into bed and think, “oh right I have MS.” That doesn’t happen. Even on the good days, you always remember you have MS.

For the first year I was quite ill and mistakenly thought that once I felt better I could project manage the disease and move on with life. I grossly underestimated the impact this disease would have on me both physically and emotionally. The irony? When we would sit around as teens talking about how we would want to die when we were old, my biggest fear was getting stuck in a body that didn’t work with a brain that did. Joke’s on me! But at least I do have a brain (confirmed by many, MANY MRIs).

While no one knows what the future holds, a disease like MS puts a bit more uncertainty in our already uncertain future. Did you know that humans are the only species who know they are going to die one day?

Today is the 8th anniversary of my diagnosis. While some milestones can easily go by without a thought, given it’s tax day, it’s doubly hard to forget.

I hope you will join me on this journey as I share stories, health information (of all kinds, not just MS), real facts, my life in faux pas, and just random ramblings.