Thursday, October 13, 2011

Carnival of MS Bloggers #99

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

Parking with MS, It's Not Always MS, Living Drug Free, Grabbing Life

by Lisa Emrich of Brass and Ivory: Life with MS and RA

As is true for many who are newly-diagnosed, my first year after diagnosis was full of learning experiences. I had a significant relapse that created a need for months of occupational therapy to regain use of my fingers on my left hand. I had another relapse only months after diagnosis and underwent the 5-day Solumedrol treatment twice in one year.

Another thing which happened only one year after I first joined the neurology clinic was that I began tripping. I fell on our stairs a number of times, leaving bruises on my shins. I fell on the sidewalk outside. I was having doubts as to my ability to walk any distance at all, for good reason.

It was early October and the weather was turning wet and chilly. My neurologist suggested that I get a handicapped placard. (Actually I had asked him about getting a placard during our previous appointment, but that was before I told him that I had fallen several times.) He wanted me to be safe. He didn't want me walking on cold, wet (and soon to be icy) sidewalks while tired. That last thing we both wanted was for me to slip in a crosswalk and be hit by a car.

So in October 2006, I applied for my very own disabled handicapped parking permit. In the state of Virginia, these permits are valid for five years. This past week I received my renewed parking permit. Somehow seeing the new expiration date (October 2016) on this valuable piece of plastic makes me realize how long I've been living with MS already.

On one hand, not very long at all. On the other hand, the next time I have to renew my parking permit, it will have been more than 16 years since I first went blind. Just made me stop and think.

by Christie of The Lesion Journals

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it. Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too.

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard. I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

by Laura of Inside My Story

A recent conversation with my daughter went something like this:

Daughter: (looking worried)  Mom, are you alright?

Me: (puzzled)  Yes, why?

Daughter:  I’m worried about you.

Me:  Ok, why?

Daughter:  Because you put boxes of macaroni and cheese in the freezer.

Me:  (laughing and very tempted not to explain) Relax, I’m not losing it.  I know I put it there because I’m  trying to conquer some moths that have taken over my pantry.  The pasta is safe in the freezer.

Daughter: (looking relieved) You had me worried,  I thought it was  your MS.

Now  first of all, remember that tip because if you ever get those moths that want to take over your boxes of cereal or other dry goods, the freezer is the best hiding place to stash their favorite grains.

The second point in sharing this episode is it illustrates how it is entirely too easy to worry and identify all unusual symptoms and behaviors as being connected to my MS.  So many times I think this MiSerable disease is acting up, only to slowly realize it was something entirely separate and unrelated.

My right foot great toe had a problem a while back and the podiatrist treated it as a neuropathic pain, complete with a compounded formula gabapentin cream to put on it two times a day for several weeks to quiet the nerve.  It solved the problem and that toe hadn’t bothered me for over a year when suddenly last week the same toe was back to throbbing.  I hobbled around on it, assuming it was my MS once again.  I was cursing myself for throwing away that jar of leftover cream.  I was pleasantly surprised when on day three of agony, I discovered by trimming my nail the pain went away.  I was working on an ingrown nail, but had assumed it was my MS.

Do you and your family just jump to the conclusion that your MS is to be blamed when problems arise?  We sure do in my house.  It’s much too easy to do when MS is a constant companion and a source of so many problems.

Macaroni in the freezer?  Ingrown toe nails?  Sometimes it is good to have an explanation other than it’s my MS;  it takes the blame way too often and it’s nice to give it a break.

by Kim Dolce from Doc, It Hurts When I Do This...

I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.

I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.

Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.

Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.

It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.

I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.

Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.

I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.

by Nickey at Multiple Sclerosis And Our Battles With Autoimmune Disorders

WOW! Things have changed since I last posted. Have you found yourself in a slump or depressed telling yourself everyday "tomorrow I will do it" or "tomorrow will be better" but it just doesn't happen? I was there! I was stuck in what I call my funk. I woke up one day and said "NO MORE". No matter how much it hurts I will Learn To Take My Life Back. You see, I had let Multiple Sclerosis take my life from me but not anymore. It was like I was stuck inside myself screaming to get out.

It all started back in October of 2010 when I went in to my local general practitioners office just to get my pulse and blood pressure taken. After sitting for 15 minutes with no movement they came in and took them both. The poor nurse nearly fainted and did it again then ran out of the room. She came back with a wheel chair and said "your doctor wants you in the Emergency Room NOW". After lots of IV fluids and medications to get my pulse and blood pressure down they admitted me for all the wonderful testing. Thank God I wasn't having a heart attack. See we lost our father when he was just one year older than me now at 34yrs old of a massive heart attack.

After being admitted they did all the stress test. I barely started the stress test and they hurried and got me off of there b/c they just knew I was going to have a heart attack. After that hospital could not figure out why this was happening they transferred me to another, bigger hospital in the Cities. This hospital just knew I had what my fathers fate was. They then decided I had to have and angiogram to see if my artery needed to be ballooned. Come to find out my arteries were as clean as a new born baby.

During my stay in the hospital a picture was taken of me. At the time of the picture I was shocked to say at 5 "8" I weighed 290 pounds. When my mother seen me she told me "Nickey, if I didn't know it was your truck you were getting out of I would have never known it was you". She didn't even recognize her own daughter and neither did I. This picture did something to me. I didn't know the person I was looking at. I stared at myself in the mirror and had no idea who that person was anymore. I didn't recognize her. I was over medicated, over weight, depressed and ready to give up. Through my faith and looking at my little boy who needs his mommy so bad I said once and for all "NO MORE!!"

That day I started taking my life back. Without telling anyone of my plans I started my journey. I began by doing a complete lifestyle change by getting off of all those medications I didn't need to be on and eating the healthiest foods I could find. At first I couldn't add any exercise b/c I was at such a weight were just walking to the kitchen would cause me chest pains. I had also found out that one of the meds they put me on caused depression so I immediately got off of that one and OMG did the clouds clear. I could think again! I could live again! I could Love again, not just others but MYSELF!

I was so overweight that my cholesterol was off the charts. They couldn't even calculate it. My blood pressure was crazy high and my blood sugar was on the brink of me being a diabetic. Just from changing my portions and what I ate I lost 60 pounds. After the 60 pounds was off I began exercising to get my legs working again. I am happy to say that I am now down 80 pounds and weigh 210. My goal is 150-160. So I still have some work to go.

I now juice all my fruits and vegetables, which is so good. I also upped all my vitamins. I had my labs drawn again and I am happy to say that everything came back perfect. My blood pressure is perfect, my cholesterol is perfect, my sugar is in the normal range but a little high. I no longer eat meat unless it is turkey or fish and eat or drink lots of fruits and veggies.

My latest add on to my journey has been getting a recumbent bike. All those spasms I was having in my legs are now cut in half if not more. I make myself do a minimum of 30 minutes a day and if I am having a good day I do an hour. My energy is up and I am feeling better. Don't get me wrong MS'ers I still have all the wonderful pains and aches, fatigues and struggles that come with MS but life is so much better. For the first time in 4 years I feel like I am living again. You see it's all in how you look at yourself and were your mental status is.

With all this said I want you all to know that no matter your weight or if your in a wheel chair or using a cane like I was YOU CAN DO THIS. Never give up and always push yourself to do something everyday to make yourself feel good about YOU. It can be something as small as looking in the mirror and saying to yourself "I love myself and like loving myself". If you feel lost or hopeless remember you are never alone and Never Give Up. I am a spiritual person and I believe through mindful breathing, meditation and pushing ourselves past that mental block we can get our lives back. Never say Can't but always try.

To all my readers out there we may have never met or may not have even spoken with one another but please know you are not alone in this battle called life. Life is so much better when we fight for ourselves. I will be writing more about the juicing and bike riding.

With Love and Hugs NEVER GIVE UP!!

This concludes the 99th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 27, 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 25, 2011.

Thank you.

1 comment:

  1. A great selection, as usual, Lisa. Getting that permit marked a definite before and after for me with the disease. I resisted for a long, long time, and then my mobility made getting it a no-brainer. Now I am really grateful I have it.