Its hard to believe that we are now in the homestretch of 2010, 32 is around the corner and I still have MS (eye roll).  I’ve recently been reminded to set goals in my life.  Both short and long-term goals.  Time is neither going backwards or standing still and life will go on while I’m still in the hole or spacing out.  More on this later, but I hope everyone have a fun and safe Labor Day!

When it comes to having Multiple Sclerosis, one of my biggest challenge is keeping my head on straight.  Cognitive Dysfunction is one my most dominant symptom at this point right now.  I sometimes have a hard time keeping tasks straight, remembering appointments and multi-tasking.  When I was working full-time, the most simple task suddenly became a huge challenge.  Industry acronyms, procedural codes, and computer software instructions constantly slipped my mind. If someone were to ask me to do something that was normally second nature to me, it would take me a minute to figure out what exactly what they were asking.

Being at home away from work is not much different.  They difference is, I work and function on my own time, though it still has its challenges.  Even as I write this post, I am constantly pausing for extended periods of time to remember what I was going to write or to dig though my brain for words or phrases to use.   I know what I want to say, but I dont remember at the same time.  Short-term memory loss is extremely frustrating and disruptive, but I am learning my way as time goes on.  Here are some things that I do to help me manage it:

• Decluttering my home. The less I have laying around, the better my mind can function.  I make sure that my desk is clear and organized. The only thing on my dining room table is a set of plates and candles.  My bathroom is clear and is set up in a way where I can get what I need in the nick of time.  I’m still working on my kitchen, though I do try to keep surfaces clear.  I like open space so furniture is reduced to items I really like and that is functional. I make sure everything has a place.  Clutter not only clogs my home, but also my mind.
• Writing it all down.  Whenever I think of something, be it plans for the present, future, something I need from the store or something business related, I write it down and not rely on my memory to recall it at later time. I keep Post-It notes and a homemade notepad (made from scratch paper) and pens on hand.
• The Notebook. In addition to Post-Its, I also have a nifty medium sized Moleskine notebook for all my to-do lists. I used to have multiple notebooks, but I realized its just easier for me to have one master book.  I use it at home and I also take it with me when I go out in case I need to create a list.
• PDA.  Ever since I got my first Blackberry a few years ago, I wonder how on Earth did I manage before.  The answer is I didn’t.  All my addresses and phone numbers were scattered and appointments were written in different locations.  The PDA is my one stop shopping when it comes to both personal and business organization.  Timers to help me remember when something needs to be done and various applications to help me manage. All of my doctors addresses and phone numbers listed with my appointments.  If I need to call someone, I know exactly where to look.  Public transportation and car directions to  locations are on my Blackberry as well.  No longer am I shifting though random papers to look for something.  I just have to remember to back it up every now and then!

How do you deal with short-term member loss or cognitive dysfunction?  How do you manage at work on in your day-to-day life?

Over the past few months, my plate has been very full.  Separating from my significant other after four and a half years have taken an emotional and physical toll on me.  Of course living in a new and unfamiliar area and being out of work on disability, etc doesn’t help the isolation factor.  Having not visited my family and hometown since I moved in September has me feeling out of sorts as well.  Hopefully travelling will be in the works this summer….or fall.  Making friends have never come easy for me, so I have to keep myself conscious of that need. I am slowly but surely building my network here in Portland.

Green and Chic still keeps me busy, but unfortunately not as busy as before. Coming up with new business strategies is my biggest challenge but I am determined to get it up and running again.  Moving, even locally took a lot of time away from the business.

My assignment now is to write down a list of short and long-terms goals.  Not think about it, do it.

“But you look so good!” is the most universal response, I think. I have gotten that a lot, but I have a few more:

“But you’re so young!”
This is very common for me. I feel the need to tell these people that the age of onset is generally between the ages of 20 and 40 with me being right in the middle at age 31 (diagnosed at 30). Usually the response is shock that people so young can be plagued with a potentially debilitating disease by no fault of their own. It’s another reminder to many people just how uncertain life can be.

“But you look so healthy/good.”
I admit, I do! Eating healthy, going to the gym and staying active when I can is the key.  What they can’t see is how many of us feel on a day to day basis.  How you look is not always how you feel.

“But you’re Black! “
Now that’s just…dumb! But seriously, there seems to be a misconception that African Americans or Africans don’t get Multiple Sclerosis. Statistics show that you are twice (some say three times) as likely to have multiple sclerosis if you are white (of Northern European origin) than if you are African American, so that could be where the misconception starts. Furthermore, your chance is almost zero if you are of pure African origin. With that said, there are more than enough of us (African Americans) who are plagued with MS.

“I have a friend who has Muscular Dystrophy.”
That says it all.

“My grandmother died of MS!”
Gee thanks, you just made my day.

My responses above may sound like I am slamming or even shaming people just because they have misinformation about MS, but I am not. Just like with any disease or chronic illness, unless you’re a medical professional in that field, or you or someone you love has it, you’re less likely to know much about it. When it’s a stranger or casual acquaintance, I usually give them the thirty second pitch. If someone is more significant to me, I usually point them to websites, MS related magazines and brochures so that they can get at least a basic idea of what it is.

It may sound like a cliché, but information, even basic information is key.

____________________________________

Have you ever gotten any bizarre responses to your MS news?

How do you usually respond to questions or false information about your or your loved ones medical condition?

If you’re the one who is asking the questions, how do you like to be addressed?

Once I get settled in my new place, I will have more time and space to sort things out in terms of my family, health and business. There will be more posts here as well.

Cheer!

“They” (doctors, fellow patients and their friends) told me that the first year of a MS diagnoses is usually the worst, and I think they were right.  Last year was incredibly difficult for me both physically and emotionally.  Thankfully things started to calm down for me in the later part of the year.  Though I still deal with some of the same physical challenges such as heavy fatigue at times, vertigo, balance issues, light short-term memory loss, heat intolerance and cognitive impairment, my symptoms haven’t gotten worse and I am thankful.  I guess the absence of pain is pleasure in this case!

In terms of my physical strength, I couldn’t be better. Though I cant perform certain activities such as running, biking and tennis, I pretty much turned into a gym rat to stay physically fit.  Certain exercise machines, weights, stretching and Yoga has made a world of difference in terms of how I feel physically.  It has helped with spasms, fatigue, memory and endurance in my day-to-day life.

That glass of lemonade has gotten a little sweeter.

I love birthdays  - usually other people’s peoples birthdays.  In a way, it takes the focus off of me and I am able to draw my energy towards someone else regardless if there is a celebration or not. Looking over the past years or decades of their lives and seeing where they are now is always an informal learning experience for me.

I like anniversaries, because I am always amazed that two people can stay together 5, 10 years and beyond.  Two people that can work together when times are not ideal.  Though I don’t think being and staying married is a measurement of a person’s character, I still look up to people that can be dedicated to something, whatever it is.

Today is my mother’s 59th birthday and Steve’s parents 59th wedding anniversary!

]]> http://beyonditall.net/?feed=rss2&p=459 1 http://beyonditall.net/?p=459 http://feedproxy.google.com/~r/Beyonditallnet/~3/FktXAtRH4xo/ http://beyonditall.net/?p=455#comments Sun, 24 Jan 2010 18:56:57 +0000 Carla http://beyonditall.net/?p=455 Drowning in work that is.

Since the new year began, my daily to-do list piles up more and more.  Part of it is my 2010 goal to be more productive, and part of it is catching up on things that’s been left behind over the past few months.  I gave myself a “day off” on Dr. Martin Luther King Jr. day, but paid for it the rest of the week – and this was after I worked the prior weekend.  This makes working a typical 9-5 a little more appealing, (not to mention the added benefit of group health insurance and paid time off) though unemployment is still very high and even more impossible in my field and previous occupation.

I thought about going back to school, but just as I was feeling fourteen years ago when I had to decide what I wanted to do with my life, I still don’t have a clue now.  Every occupation that I’m remotely interested in is either saturated, moved overseas, I don’t have the physical qualifications due to MS,  or there is just no money in it.

Its hard feeling like I’m constantly in limbo when it comes to career, but I guess that puts me in the same boat with mostly everyone else in one way or another.  I do really enjoy Green and Chic, but I feel like I need a “safety net”  just in case.  A friend suggested talking to a career counselor.  That may not be a bad idea.

Have you ever consulted with a career counselor?  If so, how was your experience?

If someone were to ask me what would I take with me if I suddenly had to evacuate my home, the answer would be the album you see in the photo.

Every now and then, my mother sends me a “care package”.  Its usually underwear, skin care products, pajamas or random books.  When I opened the box she sent me a few days ago, a saw a beautiful album with my name on it.  Opening it almost immediately brought me to tears.  Its a scrapbook she made that chronicles my entire known family history, my childhood, my brother, father and mother.  There were photos of great grand parents and great aunts and uncles I have never seen before, pictures of my dad in his early 20s and even a page dedicated to my best friend in elementary school. I had no idea she even had those photos! Names, years, places – everything was listed.

Because my grand and great grand parents were born at home and many were orphaned as young children,  my family history is very brief  because records weren’t made and kept as they are today.  Even my dad didn’t get his birth certificate until he was an adult.  Knowing this emphasized to me how important it is to keep track of my family’s history.  Since there are so few people, there is no excuse.

Seeing the pictures brought both pleasure and pain. Pleasure from seeing pictures of me and my brother together, me and my mother together, and my and my father.  Pain from missing the relationship I always wanted with my father and other family members.

This is by far one of the greatest gifts I have ever received from anyone. When I spoke with my mother that evening, she told me it took her over six months to create it. I have never known her to be artistic, but this was an idea she had in her head for years and finally decided to take the plunge.  I cant thank her enough for this wonderful gift!

I would like to thank all my readers who’ve supported me since I started Beyond It All back in early spring.  I don’t have many posts so it would be a little redundant to do a bloggers style year end review post but you know where to find them.

Happy Near Year everyone!