Tag: primary progressive

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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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.

 

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