Thursday, July 7, 2011

Carnival of MS Bloggers #92

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

Poetry, Honesty, and Golden Advice

by Nadja of Living! with MS
I had a nightmare last night.
In the corner of a dump
Hundreds of plastic laundry containers--
Even in the dream state, I recognize them.
Their contents spilled on the ground,
A graveyard of glass syringes.

That is what I left behind?
Piles of plastic and glass—

Glatirimar Acetate
During a double-blind, placebo-controlled pivotal trial, COPAXONE®reduced relapses by 29% vs placebo over 2 years in patients with RRMS (Relapsing-Remitting Multiple Sclerosis) diagnosed using Poser criteria.

No note to mention this drug only helps some people,
No guarantees.
Try Rebif, Avonex, Betaseron or Copaxone
Try hope…

No note to mention
Some never find a drug that helps--
There is no cure for Multiple Sclerosis.

Teva pharmaceuticals packages hope in blue, rectangular boxes.
30, prefilled glass syringes,
1mL Glatiramer Acetate.
Individually sheathed in smooth plastic casing.
Stacked in rows of 5
Soldiers battling disease?
Nestled beside 30 alcohol swabs
Individually sealed.

Cremate my body.
Only ashes remain.
My legacy—
Just comb through my trash.

The Five Biggest Mistakes I Have Made Since Learning I Had MS
by Marie of MS Renegade

I am a relatively smart person, but I have made some pretty dumb mistakes in my life. A lot of the dumbest of the mistakes came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

MISTAKE # 1Not immediately making long term financial plans.

I was eight weeks into a brand new job in 2005 when I was hospitalized with Transverse Myelitis, which would subsequently lead to my diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

But because my benefits hadn’t kicked in yet, and because I was in complete denial (more about that later), I went back to work way too soon and focused on keeping my job instead of maintaining my health. For almost two years I worked like a dog, twelve hour days, on call 24/7, determined to prove I was going to be the best director in the system despite having MS. And I was. Unfortunately, that did not stop them from eliminating my position the week after I applied for intermittent Family Leave for my MS treatments.

So did I pursue disability then? No, of course not. I found another job within a month, this time commuting into New York City. Ramp up the stress factor! They also eliminated my position within a week of my asking for an accommodation.

So, now I checked into disability, right? No, of course not. I got another job, still pretending I was going to work until retirement, just like I had always planned. After almost two years in that job, their mismanagement caused a huge layoff. Unemployed again. Only now I couldn’t ‘pass’ anymore. Now I needed assistive devices, cane or a walker, to get around. Huge red flag for hiring managers, though of course there is almost no way to prove that.

After a year and a half I am still out of work and, realistically, unlikely to ever return to the work force. My condition has significantly deteriorated and I cannot walk any distance unassisted. I am finally looking into disability, now that my savings are gone and I am in dire financial straits.

MISTAKE # 2:  Not immediately looking into more accessible housing.

I adore my little Craftsman cottage. It is my dream house. I bought it completely on my own with no help from anyone and I have been inordinately proud of it. When we moved in my girls were still in grammar school. I pulled up ratty carpet, painted every room in marvelous colors, pulled down vertical blinds to let in the sun, spackled, planted, repaired, you name it. It is a lovely, sunny, charming place that people settle into and are reluctant to leave, it is so comfy.

It is a relatively big house, four bedrooms, three baths, sunroom, living room, dining room, kitchen, full basement, patio, side yard, front yard, separate garage. I could blow through the house in an hour cleaning it. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take herculean effort to get up the three stairs from the back door to the kitchen, which is the only way into the house from the back.  There are even more steps in the front.

Except for those three, which I have to slowly, painfully drag my feet up one step at a time, I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now the market is horrendous, I will be lucky to get any equity out of it at all.

MISTAKE # 3: Not having an honest discussion with my children about my illness in the beginning.

 I have four children who were ages 18, 20, 28 and 29 when I first got sick. They are good people with good hearts and I know they love me. But I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. What I’ve done is caused even more pain.

My oldest son at the time very gallantly told me if there ever came a time I needed a place to live, he and his then girlfriend, now wife, would have a place for me. But I couldn’t help noticing when they bought their first house, there was no bedroom on the first floor. And what’s worse is, he has pulled away from me and now no longer even speaks to me. And I don’t know why.

My second son will do anything I ask him, fetch things in his pickup, bring over my grandson for visits, anything but talk about how sick I am. On the off occasion something comes up that is unavoidable he says, with genuine feeling, “I’m so sorry Mom”. But any other conversation is taboo.

My youngest, whenever she is confronted with the reality of my illness also says “Oh Mommy, I am so sorry.” But otherwise will not talk about it.

My third child, my oldest daughter, lives with me, with her family. She has become my caretaker. She does the wash I can no longer do, she does the cleaning, I do some of the cooking, but she really manages the house. She works full time and has a five month old baby. She sees my steady deterioration but we don’t discuss it. She is getting burned out.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared, together, is so important.

MISTAKE # 4: Not taking people up on their offers to help.

 My amazing friends and my sister have stood by me for decades, through horrible losses like my husband’s death, through joys like new jobs and buying my house, through other crises like losing aforementioned jobs. And through MS. They were there for me in the hospital and afterwards. Always, always, always offering help. “What can I do?” they will ask. And what have I said? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do. Church asked, “Can we bring you communion? Me: “Oh, no I’m good.”, thinking of all the people who were sicker than I was and needed them more.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking.

MISTAKE # 5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the blinds drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

D. E. N. I. A. L. Oh, and stupidity and stubbornness as well. Yeah, really helpful coping mechanisms.

BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. Ask for help. Let people help you (they really like to!). My denial has cost me dearly and is going to cost me more in the long run.

The Best Things I Have Done Since Learning I had MS
by Marie of MS Renegade

Well, the biggest mistakes I made were all pretty big and pretty dramatic. The best things I have done pale in comparison, mostly rather small and practical, but things that have helped all the same.

Best Thing #1: Writing my Blogs

Hands down, the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there. Oh, in high school I would write suspense stories on the bus. They would get passed from person to person as I wrote the each page. That was fun. In college I did write for the literary magazine. But that was it for ‘publishing’.

Then came blogging.

I had been thinking about writing a blog for a while, but I was really nervous about it. What if people hated it? Hated me? Then I came across a really funny piece on Wiki How called “How to Dissuade Yourself from Becoming a Blogger.” With helpful comments such as “Consider that your voice, even if it is truly a good one, is a tiny peep against the massive wave of tripe out there.” and “Rest easy in the knowledge that it's perfectly okay and respectable to not have a blog at all. Not everyone is cut out to write things that are readable by everyone. The last thing you want to do is contribute more dreck to the universe.”, my insecurity went into overdrive.

Exploring the blogging world I did indeed find awful, awful junk. But just as often I found marvelously written, funny, interesting work. A LOT of self-help blogs. I was in the process of losing weight for my son’s wedding, so in 2008 I took the leap and started a blog with the idea it would be a support system for people losing weight.

Re-reading my earliest stuff, I cringe. I HATE the name, Nourish. The writing is turgid and self-conscious. I am someone who loves to laugh and kids around all the time. This was positively grim. It just wasn’t me. Then, about a month and a half in, I fell and broke my shoulder. Not a usual source of hilarious material. But I wrote about it as a catharsis and that is when I started to find my real, genuine, goofy, voice. And it took off.

I have the best time writing that blog! I have met wonderful people who have become true friends. I have received comments and feedback that is so touching, so kind, so encouraging it has been a real gift. I’ve made myself and others laugh. I eventually started two others, one talking about books and this one, strictly focused on MS. They are a little hard to keep on top of, but still incredibly rewarding.

Writing is something that everyone can do, even if it is not a passion for you. It is a really good way to organize your thoughts and identify feelings. It is a great outlet. And I believe everyone has a fascinating story. So I encourage everyone to write down what is going on in their head, even if it is for no one but themselves.

But my bigger point here is do what you love. You deserve it. It’s time. I love to sew also, but with working and taking care of a family and a big house, just never had a chance. Now I am like a fabric junkie and sew every day. It just makes me so happy. I learned how to knit too. I can never sit still. That wasn’t a problem when I hit the ground running every day, but all that has changed as I become more and more immobile. To use up my energy, I always have knitting with me.

So that is what we need to do when we have a chronic illness. What is it you love to do that has been on a back burner? What is the passion that you have been too busy for? This is the time to cultivate the things that are most meaningful to you. Hey, you deserve it, you have a shit disease!

Best Thing # 2: I acknowledge what my body is telling me.

Me? Listen to my body?!? hahahahahahahaha The only thing I ever listened to was the voice in my head that was running persistently in the future: “I have to do this and this and this and this and after that, this. And then that again.” pant pant pant “And then and then and then…” Never. Stopped. For. One. Minute.

For many of us with MS, we struggle with a fatigue that defies words. There is literally no way that I, even though words are my thing, can convey to someone who has not experienced it what this feels like. Tired, exhausted, spent, none of these even approach it. It is like trying to walk through a wall of mud, almost all the time. Or like all your limbs and your head are attached to weights pulling, pulling, pulling and you have to constantly struggle not to fall over from the pressure. That sort of gives an idea of what it is like.

And then, for me at least, there is the spasticity. The muscles in my legs tighten to the extent it is agony to stretch them out. Especially if I am in the same position for even as short a time as ten minutes. And should I mention the dizziness? A disorienting reverberation that echoes through my body with any movement.

Sounds like fun, huh?

In the beginning, I ignored these symptoms. I DEFIED them. Kept working, cleaning, shopping, doing, doing, doing. And paid the price with regular relapses, needing a course of IV steroids to get me functioning again each time. And having more and more residual deficits each time. It took forever, but I finally allowed myself if not to accept these things, at least to respect them.

So I do the ‘bank’ thing. I am a bank account with a certain level of funds available. Each action I take, getting dressed, taking a shower, fixing a breakfast or lunch, is a withdrawal. I know now I can only make a certain number of withdrawals in a day before I am over drawn. So I budget myself. I rest, I limit. It often feels as though I am indulging myself, but realistically that is not accurate. I am being practical when I rest for an afternoon, because being overdrawn means not being able to move at all. Don't get me wrong, it is hard.  I give up a lot.  It is a huge concession for me, but the payoff is staying functional and suffering less. Less suffering. Hmmmm. I think that is worth it.

Best Thing # 3: My Overbed Table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world.

Before I got my table, because I have to rest so much, I was juggling everything on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” Now I am a nurse. If you are a nurse who has ever worked in a hospital, you have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want that memory lingering over my own personal bed.

As I am wont to do, I resisted. And spilled things and lost things and sat on things because my bed was a disorganized mess. So, taking baby steps, I priced them. And was delighted to find they had a different name: laptop tables!! Well laptop tables never had emesis basins full of puke or bed pans full of poop on them!! What is more, they were reasonable priced. So I bought one. And I love, love, love it.

Ok, I'll admit, it is hideous.  But handsome is as handsome does. It has a tilt top side for my laptop, a solid side for books, cups, plates, etc. and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my i-pod, my mobile phone, CD’s, pens, note pads and unopened, six month old mail. ha ha  Just kidding. It’s really seven months old.

Best Thing # 4: Reach-y Thingies

Even if I wasn’t crippled, I’d still be short. Hard to reach things when you are short. I am also clumsy, whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have knocked over/dropped.

So, brilliantly, I bought several reach-y thingies. I do believe that is the technical name for them.

I bought ones that fold in half for the kitchen and bedroom, with wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually knocking over. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen pins. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing # 5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of Best Things list?

Having MS certainly isn’t the best of anything. I know there are worse diseases out there, and I am grateful not to have one of those. But this one is still pretty bad.

However, by admitting I have it I am free to take better care of myself. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me it was destructive when I wasn’t taking care of myself because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you defy it.

Also by admitting I have MS I let other people in.  I am not thrilled with other people knowing.  I hate being what I perceive of as 'weak'.  But the fact is people are good and have been especially good to me in light of my illness.

I still cannot accept it. Acceptance to me suggests consent or approval. Consent? Never. I will resent this disease and everything it has stolen from me until the day I die. So I can't accept it, but I can acknowledge it. I can acknowledge the toll it takes and find a way to balance it. That is how I can be good to me.

Those are my Five and Five, five good choices and five terrible choices. However, I believe no matter what choices we make, we need to cut ourselves a break. All we can ever do is the best we can do. Sometimes we choose something that seemed like a good idea at the time. The important thing is to be willing to reconsider when things are not working out so well.

Please let me hear from you about the choices you have made in managing this disease, or any other chronic illness. The more we share the more we can help each other out.


This concludes the 92nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 21, 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, July 19, 2011.

Thank you.


  1. Thank you so very much for writing this! I almost nodded my head off agreeing with every word.

  2. Great selections, a real-life view of this illness.

  3. All your mistakes and good decisions make sense and most of the MS community will agree with you.

    I don't have MS but have spent the last month in a wheelchair because I broke my pelvis in Montreal while at the CMSC conference. My simple house with its one step at the entry and one step between the dining room and living room has made my life on wheels very difficult.

    The only thing you overlooked because there hasn't been sufficient information and most health providers don't understand, is a service dog.

    A service dog would have helped you in so many ways and would have made your life more enjoyable. Check out our work with service dogs for MS on our website, and on Facebook at MS Beyond Meds.

    We're working on a research project to demonstrate the positive effects of service dogs on the quality of life of MS patients. You'll be amazed at what you see on our website.

  4. Amy: Thanks so much! Watch that nodding! lol You don't have Lhermitte's, do you?!?! lol

    I am so glad you were able to relate. It really helps to feel you are not the only one.

    Judy: Thank you for your kind words my friend. :)

    Joanne: I am so sorry to hear of your injury! How awful! I hope you are doing better each day.

    There are definitely many, many other things that could be added to these lists and a service dog is certainly one of them. Thank you for bringing them up, a wonderful option for us.

    I am so grateful to Lisa for featuring my posts! We really need to help each other through this crappy disease. Lisa's site is a great service.

    I hope you will all stop by my sites, and Thanks for your comments!!

  5. Thanks for your kind words, Marie. We're working to spread the word about the wonderful influence of service dogs and I'm so happy when someone gets it. Service Dogs Rock!

  6. Hello
    This is my first time reading your blog. I have had RA for 14 years now. I could hardly believe what I was reading.I made all the same mistakes that you did, and I also regret them so, especially the sitting down with family. Not only had I not come to grips with things myself, but they didn't have the interest. And it hurt. (but on a kinder note...guess they were in denial). Wish I could go back.
    I need to start writing. I keep saying I'm going to, but so often I just can't focus. Instead I bury myself in Facebook and other online activities to occupy my mind and 'chat' about unimportant things.
    Although you've made me tearful, I want to thank you for sharing. It does help to know that someone really does understand.

  7. I hope you're missing something when you speak of chatting about “unimportant” things on line. In December of this year we began our journey to help people with MS and others similarly challenged by introducing them to the contributions of service dogs. The number of and quality of the responses have been unbelievable.

    Prior to starting this research project I thought social media and blogging were an enormous waste of time and effort. To put it bluntly, I WAS WRONG.

    Facebook, though it originated as a purely social (to find pictures of college girls) vehicle, has made an invaluable contribution to enhancing people's lives. Yes, it's fun to see pictures of my cousins’ kids and grandchildren, but, because of Facebook and the blogosphere, I've accomplished so much more and had fun in the process.

    We've been able to spread our message and communicate with people all over the world. I truly believe that our contributions have been and will contribute to be positive.

    Please, don't be so hard on yourself and try to figure out why you are having so much trouble doing anything. When I've felt that way for long periods I discovered my problem was clinical depression. It may be hard to try to find help, but there is help out there.

    Good luck and start writing!

  8. wonderful posts everyone!!!!

  9. @Linda,

    Welcome to Brass and Ivory. As you probably read, I also live with RA but not as long as you have. The way the two diseases can affect our lives is surprisingly similar. That's probably true for many invisible chronic illnesses.

    I have come to enjoy Facebook for keeping in touch with new online friends and older 'in real life' friends. Sometimes it becomes my disease-free zone. :)

    If you have any desire to start a blog, you should do so. It can be something just for yourself, or you can use it to connect with other people. There is a growing RA blogging community and lots of support being shared openly. If you need any pointers on getting started, just let me know.

    I'm glad that you stopped by. There are many people here who really understand. Hang in there and I look forward to getting to know you better.

  10. Thank you all for joining in the conversation. It's great to see such response. :)

  11. Thank you so much for your encouragement
    The Lord bless you.

  12. Thanks Marie. I really liked your posts. I have a friend, diagnosed 10 years before me. She proudly admits of being in denial and questions why I changed my diet so rapidly and started yoga etc to manage stress. It has stressed our friendship. I am thriving and my MRI has improved. She is still in denial and questions the changes I made in my life. Your posts were comforting. Thank you.

  13. I wish I had checked back here sooner for recent comments! Sorry for the delay!

    Linda: I am glad and sorry at the same time that you were able to relate to the things I wrote. First, I welcome you to contact me by e-mail if you want/need to talk further. You can reach me at nourishblog at optonline dot net.

    Families are hard. Don't wish you could go back, that's water under the bridge. Start over gently with them, mention things more frequently in small increments, don't try to hide your limitations. I went out to lunch with my son last week and the waitress showed us to a booth. Well, I simply do not have the strength in my legs anymore to push myself into a booth (funny the things you take for granted! lol) and I said so. I asked if we could please have a table instead. My son was shocked and upset by this revelation. But it is what it is and I cannot shelter them anymore. And I definitely got the sense he was more solicitous afterwards.

    Be more gentle with yourself about writing too. You will start when you are ready. In the meantime, write in your head. Frame situations in your thoughts in the way you would write about them. I would guess before too long you will be anxious to write them down.

    Please keep in touch and thank you for your moving comment.

    Laurie: Thanks so much for your kind words. I am glad making changes made such a difference for you. I am sorry for the tension between you and your friend. Denial is a powerful defense mechanism, and sometimes, actually a kind one. It keeps us sane when the alternative is simply too, too painful to contemplate. Some of us never are able to get past it. I hope she becomes more accepting of your decisions.

    Thank you again for your comment.

    Joanne: Thank you for your warm response and perspective.

    Lisa: Thank you, as always, for your wonderful site and mission of outreach!

    Laura: Thanks for stopping by and for your comment!

  14. I just re-read every word of this thread. Everything is so worthwhile that I'd like to enlighten some of those out there who are not familiar with you, Lisa.

    If you have no objections, I will post a link on all my social media. So many in the MS community will benefit from reading this and hopefully will continue on your trail.

    Please let me know whether it is OK to post the link. I look forward to all your posts and the comments of your community.

  15. So glad to see all the support and camaraderie which this community freely shares.

    Joanne, absolutely feel free to link to the blog any time you wish. Even if it touches just one more individual at the right moment, it is totally worth it.


  16. Lisa, I have been flabbergasted by the response to this post. It was also an Editor's Pick on Open I guess it has just really struck a chord with people. I am so glad if it has helped anyone at all.