Thursday, September 29, 2011

Carnival of MS Bloggers #98

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Eager Bladders, Fatalistic Humor, Caregiver Survey

by My Odd Sock

Nah, this isn’t about the work of legendary folk-lore author, I. P. Freely

It’s about bladder control pure and simple.  Or lack thereof in regards to many of us with multiple sclerosis.

You see, most of the time I HAVE bladder control.  This is about the times when my bladder controls ME!  Like a loyal dog to its master, when it goes–I go!

My problem usually occurs in the morning when my eyes are bloodshot and my bladder is brimming like a cup of Maxwell House.

I do my quickest spasticity-induced, “quasi-shuffle-foot drag” (Government moves faster!) into the powder room.  But it isn’t quick enough for my seemingly ping-pong ball sized bladder.
Typical view of preferred potty distance.

Vicinity when my bladder opens flood-gates.
Because my bladder likes to get a jump start on the day as soon as I cross the threshold of the bathroom.  (In Track & Field, this is known as a “false-start.”)

Needless to say, my day begins with damp UnderRoos.  (Stealing the slogan from Folgers….”The worst part of waking up is urine in your lap!”)

My sometimes accidental basement bathroom.
But the bathroom isn’t the only place where yours truly has had bladder issues…outside in the yard…in the basement…in the shower–wherever I suddenly find myself far enough away from the potty…and not enough leg umph to get me there!

My problem seems to occur when I wait too long.  Then, when it is too late–I have to go–and go NOW!

Luckily the urge has never struck when I have been in public.

I’m sure you can relate to urgency mishaps.  Do they happen to you?  Are you prone to have problems any particular time of day?  Ever have an accident in public?

Please share your story in a comment.  Your words will have me sitting on the edge of my (toilet) seat with anticipation!

So I doubt the work of I. P. Freely will ever match the popularity of a James Mitchener, Stephen King or J. K. Rowlings, but the impact of the author’s words influence nearly everyday of my MS filled life.


by Andy of our lady of the multiple sclerosi

New Neurologist: The First Visit
 
Props: 
Projected Sign:  No Eating Nor Drinking While in This Office (We’ve had too many spills!!!)
Table
Eyeglasses
Hospital Gown
File and pen

Neurologist (writing): “Do you have any problems with your eyes?”

Me (seated – table): “Not yet.”

Neurologist (writing): “Do you have any problems with bladder, bowel control?”

Me: “Not yet.”

Neurologist (Removes glasses, looks up appearing exasperated already): “You really shouldn’t be so fatalistic. Any problems swallowing?”

Me (pausing): “No.”


by Whitney at Nutrisclerosis

Use 1 whole chicken don't forget the feet. Cut the chicken up, put the whole thing in the stock pot and just barely cover it with water. Add 2 Tbs. of apple cider vinegar and let it soak for a half an hour to an hour. The chicken should be truly free range, preferable raised by someone you had a face to face conversation with about it's eating habits (lots of grass, bugs, lizards, seeds, snakes, and corn with  no rat or mouse shit in it) and habitat. Also no hormones or antibiotics. I am very  much into finding delicious heritage breeds like Dorking or Rhode Island Red. Ok, moving on.

Bring to a slow boil all the while adding: a slice of lemon (I use the end about a third of an inch slice), 2 bay leaves, salt, pepper, 1/2 cup of fresh parsley slightly chopped, 1 or 2 carrots, 1 onion, 1 or 2 stalks of celery, 3-5 cloves of garlic crushed. Once it boils, turn down to low and simmer for 2 hours. Skim the scum.

After 2 hours take the meat off the bones and put the bones back in and simmer them for another 20 or 30 minutes. Turn the heat off, let it cook a little and then strain it and throw all the chunks out. That's it there's the broth. Don't skim the fat off it when it cools. Eat the fat, or skim it off and use it to cook something else. Or give the fat to me, I will use it. I use the meat in recipes, and usually freeze it. I also triple this recipe and make it in my giant zillion quart stock pot.



I (Lisa) received the same following email asking me to post this survey in the Carnival, but Patrick went beyond the call of duty.  Read his post below and complete the survey before October 21, 2011.

[Patrick] Received an interesting email:
“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

 www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.
“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the [National] MS Society so that they can learn how to better meet the needs of those caring for people with MS.”
Please note you must complete the survey by Friday, October 21st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer


This concludes the 98th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 13, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 11, 2011.

Thank you.

Wednesday, September 28, 2011

Don't Mix Methotrexate with Antibiotics

If you don’t know, it is very important to avoid taking antibiotics and methotrexate at the same time. There is an issue of toxicity of the methotrexate as antibiotics tend to prevent the complete break down of MTX. If MTX can’t be broken down appropriately, higher amounts may be found in the body.

I personally like to think of letting the methotrexate set aside (by not taking it) to allow the antibiotic soldiers to go in a do their duty (killing the infection). Fortunately this summer, the antibiotics I took for two weeks did just that. Unfortunately, the RA mischiefs decided that it would be a good time to act up a bit.

The pain started with an extra stiffness in my left hand. I thought that maybe I was typing too much or playing too many computer games where I hold my hand in a lose fist and typically use just one finger. But after a few days, it was my left foot which joined in the ‘party.’

Moving my toes became a practice in slow motion. When my boyfriend offered a foot rub which was so very sweet of him (and I wouldn’t ever want to turn down or discourage a foot rub), I couldn’t stand the pressure or even the gentle movement of toes. Ouch!! Stop!

Enter very unhappy Lisa face. Seriously, who turns down a foot rub?

Read this post in its entirety:

Antibiotics, Methotrexate, and RA Flare-Ups
 

Tuesday, September 27, 2011

Updated Tysabri-PML Cases in September 2011

Investor outlets must be less and less interested in the growing number of multiple sclerosis patients who are taking Tysabri who have developed progressive multifocal leukoencephalopathy (PML).

The reason I say so is that I searched for the August announcement of new cases as reported by Biogen (and previously reported by Bloomberg News).  But there was nothing to be found online.  I even searched for updated information before traveling to Philly last week, but to no avail.

However, a public release of information must have taken place as the NMSS updated their website just last week with numbers reported by Biogen as of September 1, 2011.  See the updated table below.


Occasionally I have received emails regarding these 'monthly' posts regarding PML cases and the accompanying table.  Most of the time, readers simply thank me for giving updates.

Last month I received an email from a 'doctor' who wanted to know where the information came from.  He wanted to know if I had taken the table from an official publication or even a medical journal.  No, I did not reproduce this table from any other source.  I have been meticulously updating this information each month as Biogen, Bloomberg, the FDA, or other official source has given their own update.

I have seen my table reproduced without permission on other websites/blogs.  I was sad to see that credit was not given hence the copyright notification which has been added into the image of the chart.  If you wish to reference this table, please give credit and a link.  It is the proper thing to do.

Thank you.

And to Biogen, please don't make us wait so long for the next update.  You are interferring with my methodical record keeping.  :)

Monday, September 26, 2011

ePatients Come Together to Brainstorm and Share

As I briefly mentioned, I was in attendance at the ePatient Connections Conference 2011 in Philadelphia last week.  Although I didn't speak on the big stage this year, I did participate in a Patient Panel during the lunchtime hour in Wednesday.  It was wonderful to make so many more patients in attendance this year.  I didn't feel alone.

Before the conference actually began, we had a pre-conference summit of 20 prominent epatient bloggers/writers/advocates to discuss the foundations of a "Digital ePatients' Bill of Rights."  A rules of the road discussion which was packed full of great insights and details.

One of the attendees, Mark King of MyFabulousDisease, created a film which sums up and introduces the event for his readers and ours too.  Please enjoy Mark's film:



I promise that there were some serious moments with lots of intense concentration involved. But I guess that smiling is allowed as well during such an intense day. LOL.

Friday, September 23, 2011

Recovering

I have wanted to blog about this week spent in Philadelphia immersed in the world of ePatients.  I traveled to Philly on Sunday and returning home very late on Wednesday.

Thursday morning was spent in yoga.  The class seemed much more difficult than last week's, however it could just be that my body was spent.  MS fatigue (and the accompanying heaviness, numbness, and general lack of coordination) has taken center stage.  (At first I thought that I had simply worked my legs really hard in class, but I'm starting to question that thought now.)

Then Thursday was a very long day for teaching as I was attempting to make-up for most of the lessons which had been canceled on Monday, Tuesday, and Wednesday.  I was in no mind to write anything intelligent last night for the blog or otherwise.

Today I slept in for the first day in a week.  (Oh, yea, I attended an annual MS Seminar put on by my neurology clinic last Saturday morning.  And I later attended a fancy Gala on Saturday night, complete with black dress and stockings.)

I have attempted to write something for HealthCentral today, but it will have to wait for a more clear-headed Lisa tomorrow for a re-write.  At the moment, I can't really think straight.  My face hurts (and is numb at the same time), my legs are heavy and move like a marionette, my eyes are tired, and I feel overall like a truck has run me over.


I'm hoping that by resting this weekend I will begin to feel better.  If I don't, well, I don't want to go there just yet.  Depending upon how I feel in the morning, I could still dip into the emergency steroids I have on hand.

Maybe tonight's dose of methotrexate will do something good for me besides make my hands feel a bit better.  Fingers crossed (figuratively).

So I'm not really whining (at least I don't mean to be), but I just wanted to reach out to my community.  Let you know I'm here and that I'm choosing to be a little bit quiet.  I hope to be back to my blogging best in due time.

By the way, I had a really great (although entirely exhausting) time at the meetings and conference in Philly.  I hope that my fellow chronic illness fighters who were there as well have recovered more quickly than I.  If not, my heart goes out to you.  Hang in there.

Sunday, September 18, 2011

Welcome to New MS Bloggers

Please welcome these folks to the community.

Melissa's Madness

MS and the Mr.

Black Horse, White Hall

MS in the Big City

FYI: I am on the road again for the next four days. I may or may not squeeze in a blog post. Hope you have a great week.
Lisa

Saturday, September 17, 2011

Returning to Gentle Yoga

A few weeks ago, I received an NMSS email which listed new adaptive yoga classes offered by the hospital system in Arlington County.  The two weekly classes mentioned in the email would fit my schedule perfectly and were to take place less than 3 miles from my house.  So I went online to see about registering.

What I discovered was a full range of classes including a Gentle Yoga class which looked more attractive.  It was 90 minutes, instead of 60 minutes.  I assumed that this class would also not be quite so “adaptive.”  I didn’t hesitate too long before snatching up one of the remaining four spots.  I’m glad I did because the class sold out and we had our first session yesterday morning.

I really liked my previous yoga instructor, but for some reason I was not interested in going back to his class.  The last few times I did go, I felt limited and unable to keep up although I definitely gave myself the freedom to not push myself.  I just felt not as capable as I wanted to feel.


Read this post in its entirety:

Gentle Yoga: Breathing, Relaxation, and MS

Thursday, September 15, 2011

Carnival of MS Bloggers #97

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Sleeping Legs, MS Faces and Awareness, RX Yoga

by Karen of Meandering...One moment please

Photo courtesy of Hubbers

One of the best things about vacationing at the lake is kayaking and canoeing. I have always enjoyed both. This year was no exception! There is nothing quite like gliding along the water silently, taking in all that nature has to offer.

As my mobility is somewhat stilted on land now, it was exhilarating to travel quickly across the water so effortlessly. I once again felt in control of how my body moves. I felt totally able bodied, and free from the limitations that disease has imposed on me.

I zipped around the bay and paddled out on the big lake for about an hour. As I headed back to the cottage, I noticed that I no longer felt any pain in my lower back or legs. The transverse myelitis plagues me with a considerable amount of pain most days. Wow, kayaking and nature surely is the best medicine I thought!

As I beached the kayak on the rocky shore, the excitement of being pain free slowly turned to concern, when I realised that I couldn't feel the rocky ground through the underside of the boat. Not tending to be an alarmist, I continued to maneuver the kayak to a stable resting position so I could climb out.

If you've ever been in a kayak, you know that the only way out, is to pull yourself up, back, and out from the tiny opening. It usually works pretty good by using your legs to push against the front of the boat, as you lever yourself up with your arms. I kept trying to hoist myself from the confines of the small space where my legs rested. It wasn't working!

I couldn't get out of the boat! I couldn't get out because I couldn't move my legs at all, nor could I feel them! There was no one down at the dock, and the cottage is a considerable way up the hill, so calling out for help was useless, because I wouldn't be heard. It was about at this point that the panic set in.

There I was, stuck in a little pink kayak, numb from the waist down, with arms flailing, while making bizarre squawking noises. Thankfully the scene was eventually noticed by Hubbers, who was on the upper deck sorting out his fishing tackle. I think the squawking noise was what caught his attention.

He managed to haul me out of the little pink prison, and settled me on the sand, where I laid like a beached whale. Convinced that my legs had just "fallen asleep", I protested the urgent suggestions that we should take a trip to the nearest hospital, (which wasn't that near).

After a while laying flat on my back, searing pain started shooting from my toes up to my hips. Well, this was surely a good sign! Pain equals feeling, and feeling equals not paralyzed. I regained almost full feeling in both legs, (along with full pain) over the course of the next few hours.

The doc said that the angle of my legs in the kayak, put pressure on the spinal cord, smack dab in the area of the cord that has already been damaged by the TM. That pressure in turn compressed the cord further and caused the temporary paralysis.

There you have it... I knew my legs just "fell asleep"!

To be on the safe side, I have scratched kayaking off the list of fun things to do up at the cottage!


by Laura of Inside MyStory

Do you grow weary of hearing the inspirational tales of people who have MS but still conquer the world?  Do you have trouble identifying with the athlete who just ran, swam or biked across the world in the face of MS or the person who climbs into the ring with a raging bull and emerges with the championship belt? The list of motivational speakers includes a wide variety of talents and skills and they mean well, but it can be difficult, if not impossible to relate to their message.

It’s a mystery why this disease affects all of us differently and I don’t begrudge those people who appear to have benign Multiple Sclerosis – that mild disease that may not even need to be treated. Kudos to them being able to continue living life to its fullest, setting lofty goals and working hard to achieve them and I certainly don’t want to take away from their successes, but I have trouble relating to these super-patients.   Their normal of living with Multiple Sclerosis doesn’t compare to the normal of the numerous people I know who have this same disease.

The best human interest stories and inspirational tales for me don’t come from the globe-trotting, super achieving people with MS.  The real people living day in and day out with the struggles make the most inspirational witnesses to the human condition of living with Multiple Sclerosis.

Let me hear the experiences of the primary progressive MS patient who regularly lobbies on Capitol Hill in Washington, DC, to keep awareness of our needs in the limelight for legislators.  Now this is someone I should wish to emulate.

How about the single mom whose partner decided to leave rather than stay in the trenches with Multiple Sclerosis?  Recently I heard that 70% of people living with MS end up divorced; how do those people who are left alone, often with children to raise, manage?  These people only have themselves to rely on for their daily needs. There has to be a tale or two about their highs and lows that would inspire me to not give in to this monstrous disease and its unfortunate side effects.

Or maybe I can learn important lessons from the person forced onto disability from their dream profession, because MS doesn’t discriminate and strikes people from all walks of life.  What does it take to maneuver the maze of assistance programs when you lose all your assets and your identity to this disease?

There are as many stories as there are people living with MS; they may not all have happy endings, but there are lessons to be learned from all. Life with MS is not a happy fairy tale, but more like one of those tales from the Brothers Grimm, where life is often cruel. Give me the real life stories of emerging from the dark side of MS with new direction and a sense of purpose.


by Judy of Peace Be With You

We MS bloggers
comprise a small percentage
of those who are ill.

Are we a voice
for largely silent people
who need to be heard?

What is our role?
Just simple self expression?
Must we advocate?


by Diane J Standiford of A Stellarlife

As I have aged (like fine wine, uh-hem), my need to make people aware of multiple sclerosis has increased. Funny, but I expected the opposite. As my own knowledge and experience grew, MS became a bigger unknown to my worlds.

There was my work world. I was only in my thirties and full of energy! I started a disability group for employees (not ONE member had MS). I explained about MS while riding my scooter to city council meetings, to jury duty, on buses, in Starbuck's across Seattle! Then I moved to an enclosed community in gay-Seattle and began my awareness quest there. My struggle to get around with my cane was epic, and it led to many discussions about MS. I fought to make the public restrooms of my mixed retail apartment building accessible, I wrote letters to the theater chain asking for isle rails, I met with city sidewalk engineers to fix broken ramps and install new ones where needed. MS, MS, MS

By my fifties I moved to a retirement community, average age 85, and my energy for all this awareness making has run flat. Not a day goes by when eyes do not look at me in my power chair and wonder, "WHY is SHE here? In THAT?" I have considered a hand-out, the book with one of my short stories about MS located in the library here apparently is not sufficient. (Though the first one I donated was stolen, causing a bit of a brouhaha, so some residents actually wanted to read it...)

Shocking to me how many of this age group are so unfamiliar with MS. Keeps me wondering who is doing any MS Awareness for us? A once a year walk just isn't enough, and what does that do? It shows people laughing, walking, maybe a power chair here and there. But mostly a party atmosphere---how are people learning about MS from these events? (Sponsored quite often my at least one drug company.) I remember the one I went to. Finding transportation there was a joke, and the volunteers tossed me a T-shirt, "You can put this on over your shirt."

When I said I couldn't lift my arms up, they looked at me like I was an alien. Good grief. I ended up leaving after they couldn't find a place for me to sit and were having so much fun laughing among themselves about a movie they had seen...well, I just zoomed as fast as I could in hopes of catching the ne'er-do-well Access Van service before it left.

So, it seems I will be spending the rest of my life supplying MS Awareness. Fifty years ago, I am sure some other woman with MS spent her life doing the same thing. Though, when I was five years old I was hearing about MS from TV ads, magazine ads, radio, "MS. The crippling disease of young adults." A few more of those ads would make my task a lot easier.


from Melissa's Madness


That was my Facebook status yesterday. Was I really jumping around the office with my neurologist with fists in the air? Uh...no. Actually the very thought of it almost makes me drop to the floor hysterically laughing. All kidding aside, my routine appointment went well. I am set up for an EEG and MRI. He did say that my strength is good, but after watching me walk, that my balance is a little shaky (which now that I think about it, I did notice). I asked him if he could recommend anything specific to help with that. He said going for walks (duh) and doing yoga-esque balance exercises. Here's the thing. Years ago I attempted yoga at home and didn't like it. Now, like I said, this was years ago. Pre-Alison...Pre-MS diagnosis. I think at that time I maybe got bored with it, but to be honest with you, I only did it for a week at most. With my mind-set nowadays, my doctor is recommending it, so I'll absolutely give it another shot. At this point, I'm just glad I didn't get another prescription written out for me. I stopped at Target yesterday (shocker) and purchased Jillian Michaels: Yoga Meltdown, so we'll give it a go. He also wants me to continue the strength training I have already been doing.

OK...yoga time. Fingers crossed this goes well.

UPDATE 11:50 AM: WOW!!! That was so much different then I remembered!!! I really liked it! Alison just told me that I'm "sweaty and gross" so it must have been a good workout. ;)


This concludes the 97th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 29, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 27, 2011.

Thank you.

Wednesday, September 14, 2011

Rituxan and the Flu Shot

Have you seen the commercials for flu shots offered at your local grocery store?  Or have you seen the signs outside the large chain pharmacies advertising that flu shots are available already?

Some businesses are offering clever incentives for getting vaccinated this year.  There is one grocery chain which is offering 10 percent off your grocery bill if you get your flu shot while shopping.  It’s an interesting way to motivate people to get themselves vaccinated.  Quite a move to influence public health.

I remember the first year that I got my own influenza vaccine at a local grocery store.  Shots were only offered during narrow hours and locations were running out of vaccines quickly.  I stood in a line which spanned from the pharmacy area, past the meat area, and into the bakery area.  That was the year I decided while standing in line to get the pneumonia shot in addition to the flu shot.

Please read this post in its entirety:

Choosing Whether to Get the Flu Shot This Year: RA, Rituxan, and Vaccines

Tuesday, September 13, 2011

Kindness of a Nurse

It's always nice when the nurse who is about to start an IV asks the patient, "Where do they normally put your IV?  Do you have a good spot?"  This can potentially save time and headache.  But when that nurse looks at the best spot and quickly doesn't see anything, you try not to sigh and roll your eyes.  That is, if you aren't already tearing up from the pain of how rough and careless she was in tying off the tourniquet to begin with.

Here's where you apologize for being what they call "a hard stick."  Someone whose veins do not plump up.  Someone whose veins are wrecked from years and years of blood donations when you were healthy.  Someone whose skin is not pliable due to the scleroderma which marching on a slow attack through your body.

[This story isn't mine, but one of a dear loved one for whom I tried to advocate while not pissing off the staff in the ER last night.]

The first nurse makes one attempt to start an IV in the other arm instead, but it doesn't work as she went through the vein.  I mention that "Helen" - the nurse in triage who my mother recognized as being the person who finally started her IV in June the last time she came through the ER - has offered to start the IV if needed.  But her shift ends at 7PM.  It was 5:15-5:30 when she made this offer in triage.

Nurse No.1 brings in nurse No.2.  Now when No.2 ties off the "good arm" and proceeds to say, "I don't feel anything.  Did you feel something?  I don't feel anything."  Whoa.  Time to speak up...again.

"Helen has successfully started an IV before.  She offered to do so tonight if we needed help.  Can we ask Helen to come?"

After a brief look of what I can only say is annoyance and minor teeth grinding, nurse No.2 announces, "well, Helen isn't here."

"Oh, yes she is!  She on until 7:00, working triage." 

I get another special look however it is directed toward nurse No.1.  At this point, it is 6:30pm.  An ambulance brings an emergency into the ER and staff suddenly becomes very busy as they should be.  Time to wait.

I begin to wonder.  Did the nurse really go ask Helen to come help?  So around 6:45, I go to the triage area, knock on the open door to the room which fortunate doesn't have any patients being seen, and ask Helen the question.

"Did anybody request that you come start in IV?"  Helen responds no.

"Then you are being requested to come start an IV, please." 

Helen lets me know that she has 15 patients waiting in line to be triaged.  She is busy.  I look a bit pathetic I suppose as it's almost 6:50 and I know that Helen will be leaving at 7:00.

"When I'm done here and someone can relieve me, I'll come see about starting an IV.  I hope I can."  I thank Helen and return to exam room 11.

Nurses No.1 and No.2 return and say that they'll ask another person to come.  This is the secondary person working triage as I recognize his name.  We really don't wait to waste all the potential IV spots allowing everybody their chance.

"Wait, Helen said that she'd come by after 7."  The nurses leave.  OK, so now we wait.

Amazingly, Helen does arrive around 7:15pm.  "Now I feel all this pressure to get it right, like I have expectations to live up to," she says.  "Let's see."

Helen gets an IV line started in the very same place she had done so previously on her first stick!!  Whoohoo!  "Thank you oh so very much!"

It would be great if the IV saga ended here, however that would be too easy of course.  Hours later when the doctors decide to admit my Mom, it is decided that she needs a 2nd IV line.  That takes three techs and another five sticks to get accomplished.

Despite additional pleas for their "very best person who handles all the tough cases," a couple of cocky take their jabs before calling someone else in.  I even ask, "who does your pediatrics, call them."

Finally when the 2nd IV line is secure, I decide I can go home.  I pull into the driveway at 11:45pm.  Inside the house I find three very hungry kitty cats who had missed their supper.  I really should have fed them at 5:00 before leaving for the hospital.  But I was thinking, since my mother's doctor had called ahead to the ER alerting them to the fact that she was coming and what was needed, that I would be able to leave her there much earlier in the evening.

I'm so thankful that Helen came and started the first IV line.  She didn't have to do that, especially after her shift had ended.  Now THAT is kindness and dedication to the patient.

[If I wanted to dedicate more space to this story, I could tell you about the doctor who didn't answer my question when I asked for the specific numbers on the blood test results when he finally came into the room to examine my mother.  The numerous times I asked for a copy of the blood test results which at least two people said "sure" to, however I finally left without them.  The nurse who walked into the room and quickly glossed over the fact that she was hooking up antibiotics when the doctor had said nothing about needing them previously.  If I had thought quickly enough, I would have made her state specifically and clearly what the antibiotic was.  She did at least answer that the white cell counts were a little high, something I would have already known IF someone had given me a copy of the test results.  Arg.]

Friday, September 9, 2011

Life is Good

Wednesday was my birthday.  Happy Birthday to Me!!

It's been a quiet week around the house, except for that constant raining we had for three days and the resultant flooding threatening the music studio.  But I won that battle.  Rah!  Ok, so there's a rug that needs to dry completely and a towel that needs to go through the laundry.  But it could have been much worse.

I have been lax in reading the blogs and writing my own.  I kinda feel guilty, but then again, not so much.  Since starting this blog in July 2007, my daily activities have been strongly shaped by reading and writing blogs and posts for various websites.  It has become a 2nd job of sorts, a passion definitely.

But I'm finding that I need to step away from the computer more often in order to stay balanced.  Literally I will be joining a yoga class next week where I'm sure that balance will be exercised.  I'm already looking forward to the stretching as this is advertised a "Gentle Yoga" class.  90 minutes.  Whoohoo!  I'll let you know how it goes.

I'm also returning to a daily horn routine so that my chops are strong.  I don't want to be one of those horn teachers who only plays during lessons.  In fact, I can't be THAT person as I was invited to perform with the St. Petersburg Symphony (yes, the Russians) as they tour through Washington, DC in October.  That'll be fun.

Next week, I am attending the Heroes Curing Childhood Cancer Gala in DC.  I'll get to dust off my fancy black dress.  :)  And in the following week, I will be attending the ePatient Connections Conference as part of a group of attendees from HealthCentral.  This is the conference at which I presented last fall.  I'm glad to be returning.

So, lots going on around here, hence the brief break.  The MS is behaving itself as is the RA.  I am fortunate...and life is good. Oh...and...the kitties really enjoyed the roses and grass.  Their favorites.  :)

Monday, September 5, 2011

Breaks are good for you

Just as I took a breather at the top of this trail in Juneau, Alaska, earlier this summer, I have been taking a breather from the blogs.  Will return soon, all refreshed.

Hiking in Juneau, Alaska, June 2011
Alaskan wildflower

Thursday, September 1, 2011

Carnival of MS Bloggers #96

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Hurricane which is MS
by Mary K. Mennenga

When what you can do is stolen from you
The mix of emotions felt are different for each person
That learns their life and all plans made
May need to be changed or at least need a lot of adjusting
The future has become a question mark
What hasn't changed is your heart, spirit and love for life
Your not one to give up or quit when things get tough
Learning it's name M.S. gave you a power over it
Because you knew what it could and would do
M.S. didn't know the kind of fighter you are
You knew the fight was against M.S.
Not you!
What it took wasn't who you are only what you could do
You are much more than just that
Knowledge is a powerful tool when the fighting must be done from the inside out
Having limits isn't something you've had to deal with until now
Handling this isn't easy when it changes
One day you can the next your body fails it's not your fault
You know what the real reason is and it's not you
Getting people to understand does not always happen
Now all plan's made are tentative to limit misunderstandings
This is when we see how strong you are as you battle M.S.
Yet you still manage to take care of the people who love you
Of course you may not see it that way, your looking outward
We are looking in seeing your heart
That is the most amazing part of you being you


by Gracie's Mum

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.


by Gracie's Mum

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!


by Nicole of My New Normals

Doc Office
I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.

Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.

I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.

I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”

I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.
Mighty Mouse

 I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!





by Chris Tatevosian

Book Excerpt:

When I was struggling, my mood was one of nastiness.  All my actions had become hidden agendas.  My anger and nastiness developed into a learned technique for achieving my hidden agenda.  At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me.  Of course, she told me this so that I would be sympathetic and understanding.  As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her.  I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills.  Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties.  This behavior became the norm.  In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength.  I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.

Whether we want to admit it or not, the damage to our own egos can cause much anger.  Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger?  I’ll take “my wife” for $500, Alex.  If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today.  Having a chronic illness or disability is horrible, tragic, and unfair.  If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.


This concludes the 96th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 15, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 13, 2011.

Thank you.