Tuesday, December 28, 2010

What Living with MS Feels Like

I came across this article recently and think it's a great way to describe what it's like living with MS. I am not entirely sure who wrote it and the only information I have is that it may have been written by a woman named Cheree. So, thanks Cheree, for putting this together!     

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…
Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling: Stick your finger in an electrical socket – preferably wet.
Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.
Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz
Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.
- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
Swallowing: Try swallowing the hottest chili pepper you can find.
- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms
Welcome to our world. :-)
Then Finally…
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.
Cheree’s Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because alot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care! :-)

Thursday, December 23, 2010

2010: Exciting Progress Made in MS Research


The National Multiple Sclerosis Society just published this great news detail on the progress made in 2010 in the field of MS research. Gilenya, Cladribine, Teriflunomide, anitoxidants, CCSVI, intestinal parasites, myelin repair, stem cell-based therapy, Ampyra, Nuedexta, depression, environmental factors, and so much more. Click here to read their recap

No doubt, 2010 has been an amazing year. Inspirational and hopeful.  


Sunday, December 19, 2010

Panic in the MRI Tube

Clearly the worse time to discover that you have claustrophobia is during your first MRI. Yep. That’s when I found out.

At first I thought it would be a very relaxing experience. The room was quiet, it was painted a pretty light blue and there was a faux window scene painted on the ceiling. I saw clouds, flowers and green trees. I swear I heard birds twittering. I was really very relaxed. Eyes closed, I laid on the scanning bed, slid into the MRI tube and practically fell asleep. Again, I was really very relaxed. I even managed to dismiss the obnoxious MRI bangs and continued to lie still all whilst enjoying the music piping through the chamber’s speaker systems. Until. I. Opened. My. Eyes.

‘Mon Dieu this is a tight space’, I thought. The ceiling of the MRI tube practically touched my nose. Somehow, despite the obvious fact that I knew I was in a small chamber, seeing the light tan ceiling millimeters away from my face stirred a reaction. I was panicking. After a few moments, I asked myself, ‘How long have I been holding my breath’? I tried to remain calm, knowing that I needed to get through the MRI to help make a diagnosis. I tried deep yoga breaths instead.  I only made it to 4.  ‘Oh boy’, I thought, ‘I’m in trouble’. I started having visions of the ceiling closing down on my chest. Again, I tried hard to do some more yoga breaths. Still only a 4.  My breaths were so quick that I was afraid I would get kicked out of the tube for movement. Staying 100% still was mission critical. Besides there was a needle stuck in my arm for the contrast thingy. I did not want that to jiggle out. Good grief.  I was a mess. Disappointed that I couldn’t fight the anxiety, I survived with seemingly thousands of panicky short breaths until it was finally over. ‘I’m claustrophobic’ I announced to the MRI guy as I slid out of the tube. He wasn’t that interested but I was certainly worried. ‘How will I survive panic in the MRI tube next time’? I wondered.

Several months later, when my next round of scans was due, I called my neuro doc.

‘Hello Lorazepam. It’s so nice to meet you’.

I have an MRI scheduled for Monday evening and it always reminds me of this episode. Wish me luck!   

Saturday, December 18, 2010

MS. Simplified.


Trying to understand MS better? Fellow MS blogger recently posted this article:  "This is getting on my nerves" and it describes MS, simply. Thanks for posting this bunnyears!   


Sunday, December 5, 2010

Coping: My MS Survival Guide

What at first I thought was denial was really more about discovering that I have terrible coping skills.  Denial is easy to identify.  It is the simple refusal to admit that something exists.  I don’t deny that I have MS, I know that I have MS.  It is irrefutable. While I’m not ‘out’ at the office, I have no problems telling the guy at the Apple store that I am living with MS!  It seems more that I cannot cope. I know in my heart it’s because I want my old body back, the one that made me feel normal.  My old body that had legs that could handle the heat of sunny California and help me walk a straight line, my old body with the left eye that saw things normally, my old body with hands that did not tingle, numb, and spark and allowed me to hold my camera without pain, my old body for which the only burn I felt was a sunburn. I always put it out to the universe:  may I please have my old body back??? The one without these pesky lesions that cause me so much grief?  Where’s my genie in a bottle?   

Unfortunately, my lack of coping skills has turned me into a crazy person, a monster of sorts.  I have developed a really bad attitude and have begun lashing out at the ones I love. This is where it must stop. That said, I have started a list of ways, a sort of survival guide to living with MS, to help tame this monster during the transition away from my old body.  As I enhance and develop my coping skills, I will add to this list. I get the sense this process is not yet over! 

My MS Survival Guide
How to Improve Coping Skills and Tame that Monster!

  1. Breathe. Take deep breaths.  Seriously, every day and multiple times a day. And, take real deep breaths, using the diaphragm, the kind of breath that you feel in your back. I always forget to do this and get caught up in anxiety thus breathing much too quickly, taking in the wrong kinds of energy.  This results in me running around like a crazy person, a neurotic hyperactive who can’t calm down and begins to panic about just about everything and freaks out about the potential doom that lurks ahead. Good grief. This is why ‘Breathe’ is number one on my list.  
  2. Meditate.  My good friend Mel reminded me recently to mediate in an effort to reduce the stress in my life. I am crazy busy at work so I accept this challenge. After all, meditation is free and there are no side effects.
  3. Grieve. My support partners helped me realize recently that I need to grieve, to say goodbye to my former body and transition into the new one I now have.  This never occurred to me.  Grieve for myself?  Just how does that work?  It seems weird. I haven’t died. Yet, at the same time, this makes sense. I think that’s why my inner monster has revealed itself these last few weeks – I must be in the anger stage. 
  4. Improvise. Living with MS does not mean giving up the things we love.  It’s a matter of figuring out different ways to enjoy things those things we love. Some examples:
    1. Hiking is something I love.  Yet, as my symptoms developed, I got discouraged and stopped hiking in fear of falling down.  I hope to change that with the walking sticks I purchased from REI so I can stay steady on the hiking trails. I’ve gone out twice with no falls! Although I find it a little stressful making sure my legs don’t get tangled up in the poles…
    2. Also, I love reading but have a lot of trouble holding the pages of books.  The majority of my pain is in my hands so the book always falls.  My sweetie bought me a Kindle – what a gift!  It’s a lifesaver and now I’m reading more than ever. 
  5. Journal.  Buy a Moleskine journal and write everything down. Symptoms, experiences, notes from doctor’s visits, etc. I have been doing this regularly since my first symptoms appeared.  It is a great tool for me, one I use to write and draw about my MS experiences. It is a great form of expression and I hope to develop this into a stronger emotional release for me.
  6. Sign up for Pilates. Balance, body awareness, stress reduction, flexibility and strength.  These are good things right? I should say so which is why I just signed up for my first Pilates class. I must admit, however, that I am a little bit nervous. I niggle about what may happen while I’m on the Reformer. Will my Lhermitte’s fire up? I am not in the mood for the spine buzz thank you very much. Will my body heat up and cause my legs to burn? Will I have enough energy? Definitely some downsides. Luckily, the upsides outweigh all this and I am looking forward to having Pilates work wonders for my stress and, in turn, work wonders for my MS. I am ready!  I’ll let you know how it goes!

    P.S. here is a great article on Pilates and MS.  Click here to read it.
So, that’s the beginning of my list. How do you cope with MS or your chronic illness?  I would love to add your tips to my guide, just shoot me an email or leave a comment here on this blog post.


Wednesday, December 1, 2010

MS Barometer Reveals Unequal Treatment in Europe

Hey Everyone,

I just read a brief article about the European Multiple Sclerosis Platform (EMSP) "MS Barometer" results and have to ask 'how can this be right?'  I am referring to the fact that not all EU citizens have equal access to MS treatment. I think I always knew this yet I was not aware how bad it is.  One statistic in particular really bothered me...'less than 2% of MS sufferers in Poland have access to the standard treatment.' Similar facts in Romania, Bulgaria, Slovakia and Hungary.

To read the article, click here:  Survey reveals huge disparities in MS care across Europe.

First off, I am UBER grateful for the treatment I receive for my MS and UBER grateful for the health care benefits I receive to pay for everything. I am very lucky. But, how can I help my MSers in Europe? It hurts my heart to know that there are folks out there in pain, suffering because services and care are not available. It's just not right.

Today, I am sad.

Monday, November 15, 2010

That Red Circle was Exhausting!

I had a follow up visual evoked potential test (VEP) on Friday, to check my left eye that’s been weird since June.  You know the test, right?  They taped a bunch of electrodes on my head and ear, made me wear a black patch (ay, ay matey) and stare at a computer screen with a checkerboard pattern and a red circle smack in the middle? Yep, that’s the one and it was impossible to stay focused on staring at the red circle, especially with the checkerboard pattern moving!  At one point, a few minutes into the test, my mind wandered, “did I lock the car?  Yes. Yes, I did. Besides, there’s nothing in that old car that someone would want to take. Oh crap! The hospital parking lot does not accept ATM/credit cards and I have no cash on me. Did I bring along my checkbook? I sure hope so otherwise I’ll be stuck at the hospital for a while and I will miss my 12:30 meeting.  That’s alright, I don’t want to attend that meeting. Who schedules a 12:30 meeting anyway and when am I supposed to eat my lunch? Oh dear. Am I still looking at the red circle”? And this made me wonder, “how did my test go with all of this interference”?  Exhausted I was.  

Just Keep Looking at the Red Circle

Thursday, November 4, 2010

Yoseteme or Yosemite?

I've always had trouble saying the word "Yosemite" correctly for reasons I do not know. Blame MS? I can't. I've been mispronouncing the word for years. Blame my hearing impairment?  Maybe.  No matter.  I have a long history of mispronouncing words and it has turned into a source of amusement for me, my family and friends. 

This snippet was recorded at the kitchen table one afternoon as I was being coached by my dear loved ones with the word "Yosemite". It's mainly a bunch of laughter and silliness and that's good I think.  Enjoy and don't forget to laugh today!  

  Yosemite by cgermans

Wednesday, October 27, 2010

Coming soon! Twitches, airport bathrooms and another audio snippet. Stay tuned for more posts brought to you by the Lesion Journals!

Wednesday, October 6, 2010

The Lesion Journals Word Cloud

I learned about the program Worldle from a former colleague. Very cool stuff. All you have to do is paste in your text and voila! A word cloud will appear. To create your very own, just go to this site: http://www.wordle.net/create.   P.S.  be sure to click on the image to see it bigger.  



Monday, September 27, 2010

100,000 Steps Raised $ towards an MS free world

What stamina! 

MS Challenge Walkers hit the pavement and walked 50 miles this past weekend, from Carlsbad to downtown San Diego. Bravo! Walkers persevered despite the hot, hot temperatures (yesterday it jumped up to 90 degrees). Whew!  It was worth it because nearly $1m was raised!

This video clip highlights Walkers and Teams approaching the finish line.   Woot, woot!    

Wednesday, September 22, 2010

This is a seriously big deal!! FDA approves first oral drug for MSers! http://tinyurl.com/35xrzre

Monday, September 20, 2010


Niggle.  This is a GREAT word.  First because niggle rhymes with wiggle and wiggle always makes me giggle. Second because it seems so very British and I think the Brits have a great way with words. I haven’t heard many Americans use this word, have you?  Besides, niggle keeps coming up in my spell check suggesting that I try sniggle instead.  To sniggle is to fish for eels by thrusting a baited hook into their lurking places.  Gross. Let’s move on.  One more and final reason why niggle is a GREAT word is because it is a really good way to describe what many MSers go through on a daily basis.  Well, at least what I am putting myself through every day.  Let me explain. 

According to my sources, the definition of niggle is:  worry unnecessarily or excessively.  To niggle is to be preoccupied with details.  To niggle is to worry, to fret, to fuss. Admittedly, I niggle every day about every little feeling in my body. The burning in my legs, the numbing in my fingers and the blue spots I see with my left eye are all things I niggle about. I find that as I become more aware of my body and its sensations I tend to worry more.  I fret more.  Allow me to share a few highlights of my daily niggling.

“My legs are burning up.  Is this my normal?”  I niggle. “Or, is this another obnoxious relapse?”  I niggle some more.  “Nope, these symptoms are the same that I’ve had for the last few months.  Silly.  It’s just a little warmer outside so the burning is stronger.  After all, it is 100 degrees out there!”  I niggle next about the tingling in my right hand.  “All I did was water the plants this afternoon!  Why does my hand feel so dead?  Am I having a disabling relapse?”  I niggle.  “Your hand has felt like this for the last year”, I remind myself, “It’s just flaring up a wee bit”.  “But what if it never gets better?”  Good grief.  All this niggling!  I always revert back to my greatest source of niggling, my left eye. I announce to my partner, my kitties, my neighbors, whoever is listening, “just to let you know, I am seeing blue lights and my left eye is NOT right today”.  I niggle.  Again with the routine of covering my right eye with my hand and observing what I see with my gimp left eye.  I switch, covering my left eye and observing what I see with my right eye.  I compare notes and I niggle. “Oh brother, I am not seeing things clearly and was that a sharp shooting pain I just felt?  Do I need to call the neuro doc?”  I remind myself that I’ve been through this before and the neuro doc has assured me that my retina will re-adjust.  And so it goes.  Niggle. Repeat. Every. Day. 

Yes, the word niggle is perfect for us MSers but seriously cannot be good for an MSer like me to go through every day.  I am an official MS niggler and ‘tis no good. Aren’t I supposed to eliminate stressors?  

I really should take a break to meditate. 


Friday, September 17, 2010

Be Thankful for Your Jewels

I just read an interview between author Toni Berhnard and doctor-blogger Elisha Goldstein, PH.D and was introduced to this great ancient poem. Inspired by Ms. Berhnard, I printed this poem too and now keep it in my MS journal as a reminder to be thankful for the jewels in my life despite my MS.

One, seven, three, five –

Nothing to rely on in this or any world;

Nighttime falls and the water is flooded with moonlight.

Here in the Dragon’s jaws:

Many exquisite jewels.

—Setcho Juken

This interview is available online through this link:  How to Be Sick: An Interview with Toni Bernhard, courtesy of "Mindfulness & Psychotherapy".  


Tuesday, September 14, 2010

Exacerbations, who needs them!

I often have trouble speaking some words, tongue tying and butchering all kinds of beautiful words. My attempts at saying things correctly have turned into a major source of amusement for my supporters (aka my dear friends and family) and me as I get coached into speaking things correctly.  Ha, ha.  Allow me to share with you one of those silly moments through this audio snippet.  This was recorded during a family car ride as I attempted "exacerbations".  

  Exacerbation by cgermans

One of the best sources of amusements for me is the ability to laugh at myself!  


Sunday, August 29, 2010

The Sky's the Limit on Fighting MS

Hello Friends,

This is a pretty incredible endeavor.  A small plane will travel all over the globe, flying MS-ers who need treatment to MS hospitals and flying MS specialists to financially-strapped MS hospitals.  Wow.  Click this link to find out more about this amazing journey:  The Sky's Not the Limit.


Sunday, August 22, 2010

Upcoming Webinar: Excercise and MS

This webinar series is great.  I've attended two already, sneaking away from the office early to attend the 5PM sessions in my local coffee shop, and have really gotten a lot out of them.  I found them to be perfect for newly diagnosed MS-ers.  The last one, "Practical Spirituality" with Lisa Redfearn was a great reminder for me to love, laugh, let go and live.  This is important.  

It looks like the next one is about MS and exercise and is scheduled for September 14, 2010.  Be sure to sign up today!  And, encourage your supporter partners to attend too.  

Click here to sign up for the FREE webinar:  Can Do MS Webinar Series.  You'll find archived webinars here as well.  


Friday, August 13, 2010

What are these pins for?

My neuro doc was a little late for our appointment last month and there was little to do in the exam room while we waited.  Read some magazines?  Nah, that’s such a cliché and I was not in the mood to read about the ridiculous lives of our movie stars.  I did what I would normally do:  I took a visual scan of the room. 

First I noticed on the bureau shelf lots of great literature about MS, courtesy of the National MS Society.  I grabbed a bunch of brochures, to share with friends and family.  Someone surely, besides me, wants to read about how stress impacts MS.  “These will be great to hand out during dinner parties”, I thought.  Everything else in the room was boring:  normal exam table, typical doc’s cabinet (what do they store in there anyway?) and a stool with wheels.  Yet, aside from these typical exam room accoutrements, I noticed a picture of the brain sitting on a medical tray table and directly in front it was a little cup filled with safety pins.  Curious.  “What are these pins for?” I asked. My partner and I explored further, picked up the cup of pins and examined its entirety.  We wondered for a few minutes.  We did not have a clue what these were for. This was random, this cup of pins.  Then it hit me.  It’s the only possible reason.  I thought to myself “this room must be shared with a baby doctor and these are used to pin diapers.  What is this 1971?”     

Finally, the exam room door opened and my neuro doc’s assistant arrived.  I welcomed the interruption to my stream of consciousness because I really could not figure out why a neurologist would share an exam room with a gynecologist!  And, besides, this was my chance to find out what these pins were doing there.  I asked, “What are these pins for?  What does the doc use these for?”  My neuro doc’s assistant replied “oh, those are used by the Other Doctor and she uses them on her patients to find out how numb they are”.  WHAT???  She pokes her patients with safety pins???  That’s awful.  I envisioned patients sitting on the exam table while they have pins poked into their bodies and wondered just how far this Other Doctor goes.   Are the pins inserted into a patient until one yells out, “Yes!  I can feel that!”  I got stressed out thinking about this and hoped that this was not a new technique that my neuro doc will begin using.  Or perhaps this is something he’s always done and just forgot to include me.  My neuro doc’s assistant sensed my panic and assured me this is not something I need to worry about.  My neuro doc does not use these pins to determine his patient’s numbness she told me.  Thank goodness.   Now I can look forward to my neuro doc striking that metal instrument along on the bottoms’ of my feet.  YOWZA!!!!!  


Saturday, July 31, 2010

1st Known MS Case Was Dutch!

1400:  the earliest written record of someone with MS was Lidwina of Schiedam, the Dutch patron saint of ice skaters.

This is incredible especially because my family heritage is 100% Dutch (minus that Polish bit) and have the passion of ice-skating.  My dad ice-skates nearly every week and my Amsterdammer aunt ice skates on the frozen waters of Holland during the winter months.  I am finding this all very strange.  First MS case:  Dutch.  My heritage:  Dutch.   Lidwina’s passion:  ice-skating. My family’s passion:  ice-skating.  Wild.    

Anyhoo, read Lidwina’s story here.  It’s pretty interesting:  Lidwina of Schiedam


Don't Be the Patient

Be the friend.  Be the colleague.  Be the partner, lover, and best friend.  Be the artist.  Be the writer.  Be the surfer, swimmer, and diver.  Be the gardener.  Be the cyclist.  Be the horn player, conductor, and flutist.  Be the bingo player.  Be the deep sea fisher.  Be the cousin, sister, and daughter.  Be the baker.  Be the photographer.  Be the wine connoisseur, cheese monger, and chef.  Be the person other than just the “Multiple Sclerosis” patient.  


Tuesday, July 27, 2010

hy·po·chon·dri·a [hahy-puh-kon-dree-uh]

1.  Also, hy·po·chon·dri·a·sis  [hahy-poh-kuhn-drahy-uh-sis]  Psychiatry . an excessive preoccupation with one's health, usually focusing on some particular symptom, as cardiac or gastric problems.
2.  excessive worry or talk about one's health.

So, do I suffer from hypochondria or have I developed new symptoms? 

For example, sometimes at work I struggle to solve a problem and it’s not long before I am wiping the showers of sweat from my brow.  I find myself thinking, “oh boy, I really need to figure this out, it’s what I’m getting paid for”!  Of course I’m convinced it’s a cognitive function change and forget that the problem at hand really is difficult.  Half of the people I work with cannot not figure this out!  Besides, cognition also includes the ability to organize and plan.  If you saw my task management system you would worry that I am in need of a therapist to work through my OCD issues. 

Recently, however, my left eye has been causing me a lot of grief.  It hurts which I don’t like.  I look to the left, it hurts. I look to the right, it hurts.  I swear I’ve felt something like this before in the past, long before my diagnosis.  I assure myself that maybe my eye is tired, from strain. After all, my job requires me to look at my computer all day.  My eye also feels a bit swollen and yet when I look in the mirror, everything looks completely normal.  A lovely hazel eyeball is what I see.  No swelling, no redness.  I blink a few times, just to be sure.  No swelling, no redness.  Oh dear.  Naturally I am anxious and need to find out what’s wrong.  Immediately. 

Like anyone else in need of instant medical information, I scan the web for the MS symptoms that will perfectly describe what I’m feeling.   Optic Neuritis?  Maybe.  I’ve got pain and I’m pretty sure the color saturation is now different than my other eye.  I cover my right eye with my hand and then switch over to cover my left eye.  Yep.  Something’s off here.  I do it again.  And, once more just to be sure.  For good luck.  Yep.  The saturation is definitely off.  Everything looks flat through my left eye and normal through my right eye.  Uncontrolled eye movements?  Nope.  Double vision?  Nope.  Then I read “blindness” and definitely begin to panic.  I frantically try to picture my last scan.  I will freak out if I go blind.  Compounded with my hearing impairment, I will become the modern day Helen Keller.  I’d have to learn a new language because I don’t know Braille.  I barely learned French and Italian. Ciao.  Come va?  Bonjour.  Comment allez-vous?  I try harder to remember the MRI scan.  “Where exactly is the new lesion?” I ask myself, “is it near my freakin’ optic nerve”?  I look at Google images of brains, eye balls, and nerves.   Hundreds of them.  I remind myself, “the doc said that I would not feel any symptoms from this new lesion”.  Then why do you suppose I am having all of these symptoms?  Still, I should call him just in case I’m remembering something wrong.   Have I talked myself into getting optic neuritis?  Or, is something else wrong?  Am I simply a hypochondriac?  I am going to drive myself nuts.  Well, could ‘ya blame me? 

Stay tuned.   I’ve got doctor’s appointment tomorrow morning.


Monday, July 19, 2010


Is it just me or do women’s MS symptoms get wonky during PMS?   I notice more numbness and tingling, especially in my legs, as my body prepares for “that time of the month”.  I also get clumsier, dropping things constantly.  My mood swings all over the place and my partner has to avoid my wrecking ball by leaving the room.  Lastly, I have more nerve pain.  All of this on top of my normal PMS symptoms:  what a lucky lady I am!  The exacerbations usually simmer down once I am about two days into it.  I have decided to call this phenomenon “MS pseudo-exacerbations”.   

Naturally, I want to play doctor to find out why I get these bogus symptoms and figure this whole thing out.  Here are some of Dr. Germans’ Discoveries:

MS can make menopause come sooner.  Good grief!  So, is this good or bad? 

Aspirin may help prevent my MS pseudo-exacerbations, as proven by a 3-woman study.  That’s not a very good trial is it?  How can one make any conclusions with such little data?

The worsening of symptoms around the time of women’s cycle may be related to heat.  Just before “that time of the month”, women’s body temperatures increase and can make our MS symptoms feel worse, much like when the temperatures outside get hot.  Oh boy.  It’s close to 100 degrees today.  Double bummer for me. 

Apparently some men with MS experience monthly fluctuations in moods and irritability!  Imagine this:  four people are sitting in a bar in Phoenix, Arizona in the summer.  Two men and two women.  All have MS and are about to start their monthly cycle…

There is not a lot of information on MS for “that time of the month”.  Lots of small studies recommend more research into "the underlying mechanism of premenstrual exacerbations" so we can gain more insight.  Nothing like stating the obvious.  These studies must have been written by men.  

So, my friends, until we get more information and/or adjust MS drugs to treat men and women differently, aspirin it is.   


Saturday, July 17, 2010

New Webinar Series by Can Do MS

This past week, I attended one of six webinars hosted by Can Do MS.   I enjoyed Dr. Randy Schapiro's  "Emerging Therapies: Understanding MS Research" while relaxing in my local coffee shop and learned a lot about what it takes for a drug to get to market and how important proper clinical trials are.  Dr. Schapiro has a great perspective on Tysabri, FTY720, Vitamin D, and CCSVI therapies (amongst others) and if you'd like to watch the webinar, Can Do MS has it archived on their website.  The coolest part?  Dr. Schapiro co-authored the "Neurology" chapter of "MS: The Questions You Have, the Answers You Need" with my very own neurologist!!!  Way cool.

Click here to learn more about the webinars! 

Hope to see you there!


Sunday, July 11, 2010

Touching Video

I recently came across this very touching video of a young woman living with MS in Canada.  She wants to be tested and treated for the phenomenon called CCSVI (chronic cerebrospinal venous insufficiency).  Thanks for sharing Judy K!

Here's the video:  Kara Byrne's Video on You Tube

And, here's information on CCSVI:  Click here for more information on CCSVI


Monday, July 5, 2010

My First Week of Daily Injections

During my first week of taking daily injections of Copaxone, I have learned a lot, I have accomplished a lot, and all the while surviving it all!

Here is my list of “Top 10 Things I Learned During My First Week of Taking Daily Injections”

10.  The cats will play with the Autoject 2 needle cap once it is released so I have to be careful to dispose of it properly.  They love playing soccer.

9.  Finding the right time and place for injection is important.  For me?  The bedroom since it’s equipped with a sound machine.  I find listening to rain to be very calming.  Until the neighbors’ music is turned up – argh!  Turn it down &*$%^, I am trying to meditate!      

8.  Definitely use the daily planner provided by Shared Solutions to keep track of injection sites.  It’s only been a week and I’ve already fallen out of rotation, skipping over the thigh and straight onto the stomach.  I really like following directions and do not like falling out of order.  I want an A.  

7.  Preparing the syringe for injection is fun!  Seriously.  I like loading and locking the syringe into place, it's rather much like loading a gun.  I really hate guns and have never used one but this step sort of makes me feel like I am on a special mission, like a secret agent getting ready to fight the bad guys.  Agent 99 takes on MS! 

6.  Calm. Down.  Relax.  And.  Breathe.  I find that I get a little worked up just before injecting and need to remind myself of this mantra.  Calm.  Down.  Relax.  And.  Breathe. 

5.  The needle doesn’t hurt at all.  Sometimes I find myself asking, “Did it go in?  Is this thing working right?”  Then the burning arrives and I know everything is working just the way is supposed to. 

4.  Having my partner with me while I injection is UBER important, especially during these first few weeks.  On Friday night I jammed my gun, I mean my Autoject 2, and I panicked.  She stepped in and fixed everything for me. Sigh.  “Calm. Down. Relax. And. Breathe”, she said. 

3.  Taking pictures of where I inject is a great idea (thanks Anna!).  There is no way I will remember where I inject, no matter what I write in my daily planner.  I will try this during Week 2. 

2.  Trying not to let the injections take over your life is challenging.  I do think about it all the time, growing anxious about accidentally skipping a day.  Yikes.  Maybe an alarm will help.
1.  Save the most important thing for last, that’s the intention of this list.  The reason why I take Copaxone every day is to slow down the progression of my MS.  I do not want this disease to get any worse so here goes nothing.  Bring on the shots!   


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