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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?

Since I was diagnosed with Multiple Sclerosis last year, I have gotten a variety of responses from people when I told them the news. I am not one to advertise, but when someone asks about my cane or why I was on disability, I have nothing to hide. Over the past year and a half, I have read several print and online articles and blog posts written by fellow MS survivors regarding some of the most common responses to their news.

“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.

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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?

The first week of January marked the one year anniversary of my Multiple Sclerosis diagnoses.  When I was first diagnosed, I wasn’t really that surprised based on the symptoms I was having that started months before.  My first symptom was tingling in my feet, which could have been anything.  Optic Neuritis showed up about five months later and I started to worry and did some investigation.

“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.

Last week I had my first appointment with a Neurologist at the Oregon Health & Science University since I arrived in Portland almost two months ago.  The first appointment with a new doctor (especially a specialist) is usually the most difficult for me.  Its almost like going on a blind date with someone you’ve never even spoke with over the phone or exchanged emails with.  Yes, he was cute…ha!  But in all seriousness, I think this appointment went pretty well though I think I left with more questions than I had coming in.  I am going to have my second brain and T-spine and first C-spine MRI tomorrow evening to see what’s been going on since January when I had my first MRIs.  I still don’t know how I feel about him yet, but I will meet with him again next week to go over my MRI results.

With MS, it seems like our only choice is a choice of several drugs to take to hopefully slow down the disease progression.  Pharmaceuticals is one of my worst fears.  I don’t even take over the counter medications. I don’t remember the last time I had an aspirin. I usually only take them when I really have to like when I had to take Prednisone last spring for a drug eruption.  It was a pharmaceutical to counteract horrible side effects from another pharmaceutical ironically.

I do my drug research, but it always leave me with an icky taste in my mouth.  Everyone else I know with MS are quick to jump on the drugs and I feel like I’m the only one who pulls away in fear.  I know its a choice, but its one of the most difficult choices I’ve ever had to make.

I know its been a while since I last posted, so I’m going to give you a short update.

The last time I wrote, Steve had fallen and broken a rib.  As you can imagine, the first several days was the worst but he slowly started to get better.  He is pretty much at 90% now.  He still has some aches and pains, but he is able to be active, lift and workout.  This worst is definitely over!

A couple of weeks ago, he struggled with one of the nasty flu bugs that’s going around these days.  Thankfully, he was able to shake it off pretty quickly.  I am fine and lucky that I never caught what he did. (knock on wood!)

Multiple $clerosis

Despite some setbacks over the past few weeks, I do have some good news:  I was approved for the Oregon Medical Insurance Pool.  Its a state run health insurance program that helps people who normally cant get insurance due to medical conditions.  Its not free or even low-cost by any means, but at least its available to me and so many other people who need it.  Multiple Sclerosis is a very expensive disease to have and the cost can be in the high tens of thousands of dollars a year.

The disease modifying drugs (or DMDs) alone can cost up to $30,000 year.  MRIs can be up to $5,000, and some doctors request them annually.  Then there are the doctor’s visits which can be quite frequent.  Some people may need to be hospitalized at one point or another. Many people are in physical therapy which I may need to start soon myself; and the right type of care isn’t cheap.  Then there is the need for medications to treat related symptoms.  Equipment and tools to make life a little easier or even possible such as canes, walkers, ankle-foot braces, wheelchairs, wheelchair lifts, cooling devices, hand controls for cars, home modifications including the need to move to a single story home or move to a more centralized location (and the list goes on) adds more financial strain to a person with MS and their families.  Though many people with MS are able to keep working, many of us are on temporary or permanent disability which means less money in our pockets.  And just because a person has MS, doesn’t mean they are not struggling with other unrelated health issues.

The average age of onset for MS is between the ages of 20 and 40, so many of us will have a long time to deal with these financial pressures.

Photo by: snappED_up

On Saturday night, I think I reached my tipping point. When I’m in a difficult situation large or small, I usually try to cover it over with any band-aid I can find with until I finally snap.  Not the type of snapping  where it would land someone in the hospital and me in jail, but the type of snapping where I feel like I’m at a place of no return. Falling down a deep hole, crying uncontrollably, and not believing the sun will ever rise again.

The Crashing Sun

It started late Saturday night when I was in the upstairs bedroom wrapping up whatever I was doing to get ready for bed. Steve followed me up to converse with me for a few minutes and then headed back downstairs to finish preparing his late night snack.  A few seconds later, I heard him fall down the flight of stairs.  He fell down all twelve stairs down the steep staircase. When I got down to where he was, he was up pacing the kitchen, scared and confused. I was shaking, scared and confused myself.  He wanted some space to process what just happened, so I went back up to the bedroom to cool out and calm down. For about five minutes, I couldn’t stop shaking and I couldn’t move.  Every breath was a challenge. The issue with Multiple Sclerosis is that it makes you hypersensitive to anything, large or small.   Sharp and loud sounds and any kind startles me.  Anything that’s remotely scary puts me in panic mode. Common life stressors wreaks havoc on my body.

I decided to rest a little upstairs when I heard him scream. When he yelled out, it felt like every nerve in my body was connected to an electrical socket. I went downstairs and he could not move.  Apparently he cracked a rib when he fell but had a delayed reaction. He felt something (his rib) move a little.  He could not move, walk, stand, and had to be helped to the sofa. It was late so he just wanted to stay where he was and sleep. I made a covered icepack, got him some pillows and blankets, and made sure he was breathing OK.  I went upstairs to lay down and that’s when I had reached my tipping point.  It was my reaction to what happened with Steve injuring himself and my physical and emotional reaction to it.

Since I was diagnosed in January, I have had every reason in the world to not really face how I’m feeling about my diagnoses.  Work, health problems directly and indirectly related to MS, the pregnancy, going on disability, health insurance issues, moving and so on has distracted me from my emotions. Add to the fact that I’ve been telling myself that ‘other people have it worse than I do’ in an effort to comfort myself has pulled me away from myself. I dont think I’ve ever cried as much as I did that night.  Steve falling was just the straw that broke the camels back.  Though no one knows what their future will bring, having this disease has me more afraid that I have ever been.

Slowly Rising Again

For the next three days, I was his 24/7 nurse.  He had to be helped on and off the sofa where he still has to sleeps at night. We still cant sleep together because we only have a full size bed right now and the movement  from having someone sleeping next to him is too much to handle. Going to the bathroom, showering, eating – every move had to be thought out.  Coughing and sneezing is the worst. He is slowly able to start taking care of himself and by Thursday, we were able to go out together to walk the neighborhood.  I am doing better also.

Though I still have a lot of unanswered questions and questions that are sitting dormant waiting to be asked, I am sitting in my home office watching the sun slowly rise in the east though the dark clouds from last night’s rain.

If I could control the weather, it would be fall or winter all year.    I mean, I wouldn’t want  Minneapolis winter, but I would take our relatively mild west coast winters over summer any day.  The reason?  Heat.  Many of us with Multiple Sclerosis are very heat intolerant so we try to avoid it as much as possible – if possible. How much it affects us, its individual.  It puts us in a state of “pseudoexacerbation”, which is a temporary exacerbation of MS symptoms.

For me, I can go from feeling my very best to complete misery in a manner of minutes just because its a few degrees warmer. When I’m outdoors, my limit is around 75 degrees.  At 80 degrees, I am OK but at that point I need to stay in the shade and not exert too much energy. When its 85, I need to go indoors.  Some people can tolerate more heat, whereas others experience symptoms when its much cooler.  We have been having strange weather patterns in the Bay Area (strange to me) and have had a few very warm days followed by much cooler days.  During the hot days, I barricade myself to the house, try not to go outside for anything other than getting the mail and switch on the air conditioner in the car the second I get inside.  I don’t workout or do much of anything on those days.  I’m just thankful we don’t have humidity in this part of the country.

Some of the symptoms I experience feels very much like an exacerbation though it isn’t.  They are:

• Increased Optic Neuritis (blurred vision) – I would never be able to drive a car without air conditioning.
• Decreased cognitive function – Forget about working.
• Fatigue – Forget about doing anything.
• Tremors
• Increased pens and needles in my feet
• Spastic
• Increased Vertigo

The interesting part is, once I am able to cool off, usually by air conditioning or a cold shower, I can feel better within minutes.  My days are planned around how hot it is and occasionally, appointments or dates are postponed.   I would never be able to live in a traditionally hot or humid climate.  I wont attend a conference or expo in Las Vegas unless its in the late fall or winter among other activities. Its not easy having the weather control your life, but I try to make the best of it. When its too hot to stay home, I would either go to the movies, an indoor mall, the Berkeley Marina, a trip across the bay on the ferry, or a drive up the coast.  When the sun starts to set, that’s when I go out to run errands and get some fresh, outdoor air.

If you are heat intolerant, what do you do to cope? I am always looking for new ideas!

Preparing for a move can bring up a lot of emotions.  As I go though my things to either pack or purge them, I find items I haven’t used in a while.  In a small basement cabinet, I came across two of my tennis rackets and four packs of tennis balls.  I wondered if I should bother packing them with the idea that I would be able to use them again, or just give them away to someone who will.  My running shoes has already gone in the garbage (they were worn down anyway) and I gave away my ski suit.

Though I am able to work out on a stationary bike and other equipment, take long walks, and use hand weights, I’m reminded of what I cant do.  One of my favorite places to go is the Berkeley Rose Garden where I totally lose myself in all the colors and shapes that surround me.  There are a few tennis courts at the garden where I sometimes gaze at the people doing what I used to be able to do.  I wonder what would happen if I go out on the court. I would have to put down my cane, not do any sudden movements with my head, not raise my arms, or stoop down.  That would limit my ability to play. Looking at the players, I feel like a small child gazing longingly at the big kids playing outside.

Going from running in December to using a cane in late January to disability in March is pretty dramatic.  I’m almost afraid to even think about the next few years. I remind myself that I should focus on what I can do now. If a bike or rowing machine is all I can handle, then that’s what I will do. If going out on a neighborhood walk with my camera is my limit, then so be it.   Besides my physical fitness, I have my piano, sewing machine, art painting supplies, gourmet cookware, choral music scores, camera, my websites, and my knitting supplies.

My advice to you is not
to inquire why or whither,
but just to enjoy your ice cream
while it’s on your plate.

-Thornton Wilder

A few neighborhood photos.

Photo by: Cillian Storm

On Facebook, there is a Multiple Sclerosis group with a discussion board that I frequently read and post to.  Someone asked a very thought provoking question, “How has MS changed your life?” I have less experience with MS than many of the other people on in the group, and it didn’t take me long to come up with a response.

Besides the physical challenges, being on disability has been a life changing experience for me.  My last day at work was March 19th with the expected return date of April 27th. Some unexpected challenges brought my return date up to July 15th.  Last Friday, my Neurologist determined that I am not ready to go back to work and is keeping me out for the rest of the year, and possibly  longer.  The past few days has been pretty draining for me and there is no way I would have been able to work at my day-job during this time so I think he has a point.

As of then end of June, I will no longer be employed by my company due to the fact that they cannot hold my position passed that point.  The twelve weeks (per calendar year) that  they are required by law to hold my position in accordance with the FMLA act is ending.  During my performance review last December, I had made some short-term goals to take a course that would eventually advance me in company, but that’s not happening now.  These courses would have been a compromise to going back to school at this point (I don’t have a college degree) especially since I’m not interested architecture as a long-term career.  It would have been a means to an end.

Though it looks grim on the surface, its not all doom and gloom.  Right now, I have time to work on my business, time to take better care of our home, the ability to rest when I need to and take care of my body, go to doctor appointments without asking for permission, go take a short hike when I want, and basically conduct my day-to-day life. I am able to do all of these things  without killing myself as I was when I was working 45+ hours a week.  This is the  life I have been dreaming of for quite some time (minus the MS or course).

Though I’m not sure what I’m going to do for work when I end my disability, at least I have some time to figure it all out.  Who know what life has in store for me in the next year.

Life has given me a very large lemon to work with and my goal is to make enough sweet lemonade to share.

I cannot believe its almost June!

Though it felt like January just began days ago, it also feel like a lifetime has gone by.  I was diagnosed with Multiple Sclerosis on January 9th and life has never been the same since. I remember sitting in the doctor’s office fearfully looking at the MRI slides of my brain. Though parts of it looked like Swiss cheese, I felt great. I thought the worst would be the blurred vision in my left eye and the pens and needles sensation in my feet that I’ve been experiencing for months.

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