Chair of the Club

Wheelchair used for Multiple Sclerosis

I’m so happy to introduce the FUMS audience to Jennifer Digmann via her guest blog today.  She and her husband Dan are both incredible human beings – and both happen to have Multiple Sclerosis.  Jennifer was diagnosed in 1997; Dan was diagnosed in 2000. She has secondary-progressive MS. His is relapsing-remitting. Through their writing, public speaking and advocacy work, the Digmanns have inspired countless friends, colleagues and perfect strangers with their amazing love story and passion for life. See for yourself in their book “Despite MS, To Spite MS,” a compilation of their heartfelt essays, accented by haiku-style poems by Judy Williams.

Click here to order a copy now:

Chair of the club

by Jennifer Digmann

I belong to an exclusive club. It’s unlike any other club to which I’ve ever belonged.

It is not like the Delta Phi Epsilon sorority I was a member of as a student at the University of Michigan-Flint or like the Immanuel Lutheran Church group my husband, Dan, and I meet with each month.

No, this club is something special because membership in it was not by my choice.

I am a member of the “wheelchair user” club. And for as much as I do not want to be a member, I consider myself fortunate to include myself in this group.

I did not immediately gain wheelchair user membership upon my diagnosis with Multiple Sclerosis  back in 1997. MS signed me up in 2002 when it took away my ability to walk. At first, I didn’t think my wheelchair dependence would last.

“Certainly this is a bad dream. As soon as I wake up, I’ll be back on my feet,” I naively thought.

Twelve years later, I’m still in my chair. I hate just about every single aspect of my wheelchair reliance, including the continued concerns about accessibility, decreased circulation, risk of pressure sores and the invisible barrier that surrounds me and prevents me from getting close to just about anything.

But then something like the recent conversation I had with a complete stranger reminds me just how lucky I am to be a member of this club.

As Dan and I were out with some friends at our local watering hole, a fellow wheelchair user I had never met rolled up to me and frankly opened the conversation, “So, how long have you been in that thing?”

There is no need to pussyfoot around the subject. Really, if I’m going to be offended by a no-nonsense question like that, I’m not dealing with my condition as well as I thought I was. And besides, who doesn’t like chatting with someone interesting in a bar?

Undeterred I answered him, “Twelve years. And you?”

He introduced himself as Bill and told me his story. Bill explained his near-paralysis caused by an accident almost fifty years ago, his successes and failures, and proudly talked about his two sons and the love of his life, Nancy. They’ve been married for 58 years.

He then attentively listened as I answered his question about how I ended up in my wheelchair a dozen years ago. When I told Bill it was because I have MS, he sympathetically grimaced as he said, “That’s a bad deal.”

I agreed, but then went on to explain how I’ve worked to make the best of the situation, found strength in my friends and my church (which interestingly is only two blocks from Bill’s home), and in my husband.

When he asked how long Dan (who also has MS) and I have been married, I boasted that we will celebrate our ninth anniversary this September.

Just like that, I met another wheelchair user who can relate to my mobility challenges, frustrations and triumphs. These are among the reasons I am grateful I belong to such a group of open and understanding people who are eager to listen and share stories about how we all were initiated into our exclusive club.

Before Bill rolled out of the bar, he made sure to introduce me to Nancy, his wife, who he calls his angel. And I introduced them to Dan, my husband, who is my angel.

In making fast friends like Bill, I see another way us reluctant members of the wheelchair user club, in an ironic sort of way, are truly blessed.

 

Special thanks to Jennifer, for this guest post, for your wonderful, inspirational book, and for being such a great example of all that MS‘ers can accomplish “Despite MS, To Spite MS“.  To catch up with Jennifer and Dan, please visit them at www.danandjenniferdigmann.com

 

Remember, sometimes it helps the stress, just to say F-U-M-S.

Special thanks to www.FreeDigitalPhotos.net for providing the cool wheelchair clipart.  And the background is orange.  How cool is that!!??!!

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MS, Obituaries and Funerals – Oh My

Death and #MS

I recently went to a funeral for a friend’s mother.  This woman had had MS that had steadily progressed for the last 30 years.  I remember thinking of her in her wheelchair, having to be “attended to” and “done for” when I was diagnosed.  Would that be my path?

I found it so interesting that there was no mention of her MS in the funeral service.  What a gift – she had lived with this debilitating disease – everyone in her sphere had – but in the end, it wasn’t even acknowledged. I guess that’s the final, great FUMS!  She had lived a very full, productive, love-filled life and that’s what was the message for that day.  Not that MS had won.

So often I come across obituaries (yes, I read them everyday – weird?  Maybe.  I do it because I feel like I can pay my respects to someone I never met – honoring their life by being aware of it.  AND – I’m happy to find my name conspicuously absent from that particular roll call!!) that seem to highlight that aspect of the deceased’s life.  The debilitating, progressive nature of the disease is seemingly pervasive in most of the obits I’ve seen pertaining to someone with Multiple Sclerosis.  The funeral I attended was in stark and happy contrast to that view of  life.

I feel as if I’ve been kicked in the gut each time I see that someone has died “of complications of MS.”  That’s the way it’s most commonly phrased.  I read with rapt attention to see how old the person was, how long they’d had it and, if I’m lucky, a mention of just what it was that finally did them in.  Morbid, I know.  But is it really?  Isn’t it natural to want to know what others within your population are falling prey to – if for no other reason than to somehow watch for and avoid that very ailment??

Wait a minute.  I just re-read that last line of drivel.  Just who in the hell do I think I am?  If that isn’t the height of arrogance.  Do I really think that I have some control over the course of this disease?  Of my life, in general?  Of what is going to take me out?  Why yes – I do.  It may sound arrogant, but I think that awareness of what to watch for and be careful of – and a constant desire to learn more about myself, my body and my disease is – well, healthy.

Reading that someone has died with or from MS is tough.  I can’t get over that initial breath-taking moment.  Going to the funeral of someone who has succumbed to something that you have – pretty deflating. I don’t think that will ever change.  The choice, then, is how to cope with it and what to do with that feeling.  I’m choosing to channel that fear and negative energy into something positive:  I’ll continue on my quest to care for myself, to learn more and do better, to raise awareness and money, and to be a part of the solution.  The cure is out there – we just need to find it.

How do you deal with bumping into the disconcerting obit or funeral for a fellow MS‘er?  Please, leave your comments in the comment section under the blog.  By sharing our thoughts, experiences and solutions – we all benefit.

I’m including some really great articles I found on the subject of MS and dying.  These are thoughtful looks – often with excellent resources – into something that we all need to spend some time thinking about – albeit uncomfortable:  Death From Complications of Multiple Sclerosis; Can I Die From Multiple Sclerosis?; Celebrity Deaths from MS; Multiple Sclerosis Prognosis and Your Life Expectancy.

Sometimes it helps the stress, just to say “F-U-M-S”

Special thanks to www.FreeDigitalPhotos.net for letting us use the sweet photo of the grave marker.  

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Is Multiple Sclerosis Pain Real??

Pain from Multiple Sclerosis

 

I remember when I was diagnosed, the neurologist told me I had nothing to fear in the way of pain.  “Multiple Sclerosis doesn’t cause pain,” he assured me.  Did I mention that he’s my FORMER neurologist??

I don’t know if it was the tingling pain, the searing pain or the shooting pain that presented itself first, but either way – HELL YES, MS PAIN IS REAL!

I’ve heard from other FUMS’ers that they, too, have been told that there is no pain related to MS.  I don’t know where the medical community comes up with this fallacy or how it behooves them to perpetuate that myth, but I hear it quite often.  Well, I’m here to tell you – don’t believe it.  MS pain is real and all too prevalent.  So prevalent, in fact, that there are definition of various types of MS pain.  Let me give you a little glossary of terms:

Lhermitte’s sign (lair-meetz sahyn) – this is that “electric shock” deal that runs from the back of you head down your spine – particularly when you bend your neck forward.

Dysesthesia (dis-uhs-thee-zhuh) – this is that burning or aching nerve pain that likes to settle in different areas of your body – especially at night.  Did I mention it tends to be constant?  It’s particularly fun when the “affected limb” feels cold too.  Good times, good times.  BTW, the “MS Hug” and that intense itching thing are also classified under the “Dysesthesia” column.

Trigeminal Neuralgia – “It has been described as among the most painful conditions known to humankind.”  It’s intense facial pain that’s often misdiagnosed as TMJ or other dental issues.  This may be the mother of all MS pain.  None of them are good – but this might be the worst.  It affects mostly women and is more typical found in people over 50.  Did I just mention I had a birthday recently??  Happy 50th to me!!

Spasticity  (you’ve got the pronunciation, right?) – this is where the muscles tighten to such a degree that it’s like a knot in whatever set of muscles is affected.

Bugcrawlingomania – okay, I made this one up but – you know what I’m talking about, right?  When it feels like there are bugs crawling on you and you swat at “them” repeatedly, bringing about further pain and suffering.

Greased Lightening (again, you got this one, right?) – this is where a lightening-like shock hits you – seemingly out of nowhere – and shoots from one area (i.e., your head) to another (i.e., your toe).  You don’t dare move or breathe for a moment in sheer terror it’s going to come back.

 

This is certainly an incomplete listing of all of the different types of MS pain, but I wanted to get it started.  Also to be included would be headaches, bowel and bladder issues that result in pain and let’s not forget the emotional pain caused by MS.

I’d love to hear your experiences and any additions you’d have to this list.  Please leave your two cents worth in the comments section below this post.  And here’s a couple of links for help with the various types of pain that DO come with multiple sclerosis:

 

American Chronic Pain Association (ACPA)
P.O. Box 850, Rocklin, CA 95677-0850
800-533-3231 (toll free) or 916-632-3208 (fax) or email

TNA- The Facial Pain Association
925 Northwest 56th Terrace, Suite C, Gainesville, FL 32605-6402
800-923-3608 (toll free), 352-331-7009 or 352-331-7078 (fax) or email
* please make sure you state your diagnosis of TN*

Jameson Irish Whiskey (my painkiller of choice)

Bow Street, Smithfield Village, Dublin 7

Tel: + 353 (1) 807 2348/ Email: ojd@jamesonwhiskey.com

 

**Special thanks to www.FreeDigitalPhotos.net for hooking us up with this great picture of a model screaming- like she has MS!!

 

 

 

 

 

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My Friend Has Multiple Sclerosis

I got a text  from a friend the other day.  It said that he was sorry for contacting me out of the blue with a bomb like this but – his wife had an MRI last week and they just left the neurologist’s office where they learned she has MS.  I could hear the anxiety and […]

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Birthdays and MS

Birthdays and MS

It’s a big day for me:  today, I’m 50.  There I said it.  I feel like I’m at a birthdays anonymous meeting:  “Hello.  My name is Kathy and I’m 50.”  I’m reposting a blog post from a couple of years ago because I read it and it still applies.  Oh and one more thing, thank you all […]

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Quit “Shoulding” All Over Yourself

“I’m so tired, but I should really clean up those dishes.”  “I don’t want to talk to them, but I really should.”   “I should really be resting, but if I don’t finish this laundry, it’ll never get done.” I felt the familiar fatigue creeping up my legs and into my back.  The spasticity in my […]

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