Must Be the Shoes...

I've never considered myself a slave to fashion.  When it's come to wardrobe, I tend toward the comfortable, with the occasional nod to the quirky.  I haven't been all that interested in which designer's name was on the tag.

But I've come to understand and appreciate the fascination that some women have with shoes.

Before I started having mobility issues, I didn't give much thought to shoes.  If it was comfy and not butt-ugly, I'd wear it.  But when I started having mobility issues, I started paying a lot more attention to my shoes.  Even the slightest heel added a degree of difficulty to the sport of walking that I was just not prepared to handle.  Then the physical therapist recommended a foot up, a device to reduce the frequency of foot drop.  Most people can walk without having to think about keeping their toes out of the way  Their heel hits the ground, then the toes follow.  As many of us with MS know, foot drop is that not-fun-at-all tendency to not lift our toes, which can lead to falls.  The foot drop is a device you strap around your ankle and connect to your shoes to help lift your toes out of the way when you're walking.  Unlike a lot of mobility aids, the foot up is a relatively inexpensive solution.  The biggest downside?  You can only use a foot up with laced shoes.

So bye bye all those cute little flats with no laces.  So long sandals.  Sayonara flip flops.  Dress shoes?  Ha.  But walking without falling interested me more than those cute shoes, so I did a long-overdue closet purge.  I was on a quest to find shoes that were comfortable, cute, and had laces.  I found a few pairs, and most of them were comfortable enough that I could wear them for more than 4 hours without grimacing in pain or wearing blisters on my Achilles tendon.

But that got old real quick.  And those shoes that I had thought were cute looked clunky and boring pretty fast.  They certainly weren't flattering with dresses, and except for one sassy pair of Keds, they looked silly with shorts.  I felt like the ostracized kid in old sitcoms who walked around with the corrective shoes and the retainer that swallowed her head.  I hated looking down at my feet and seeing those damned laces.  And do you know how hard it is to tie shoes when you have spasticity in your legs?  I'm supposed to be able to securely tie a shoe when I can't even bend my knee to reach the shoe?  But of course, an untied shoe was a danger from which not even a foot up could save me.

So the new approach is screw the foot up.  It makes it harder for me to go up and down steps because of the way the brace secures around my ankle, so in some ways it was making my walking worse.  Then I treated myself to a couple of pairs of new shoes without laces.  The first pair is a cute black shoe that replaces the laces with zippers.  It's easy to get on and off my foot (my kids can even zip the shoes!), and it looks pretty darn cute with a nice pair of pants.  The other pair has velcro to keep it secure on my foot and looks much sleeker than the laced shoes.  Both are easy to put on, even when the leg wants to stiffen up and stick straight out.  How when I look down at my feet, I smile.

I still can't wear a sassy little pair of sandals.  But at least I don't have to try off the prison matron shoewear look anymore.  And even though I still scuff a little, it's easier to manage steps in the new shoes sans foot up.

There's no rule that says I have to abandon style just because I have MS.

Ignorance is Cruel

Well-intentioned but ignorant people can be so cruel.

One of the biggest challenges of MS is the "invisible" symptoms.  People don't see what's causing them, people don't understand them, but it's amazing how much they think they know about how to fix them.

Take spasticity, the muscle stiffness and spasms that can cause your leg to lock.  It's not uncommon for me to try and bend my knee for my leg to instead make my leg straighten out and not budge.  In the winter edition of Momentum, the magazine distributed by the National MS Society, neurology professor Bruce Cohen explains that spasticity is caused by spinal cord damage.  The common recommendation is to alleviate the pain and stiffness of spasticity is to exercise through stretching.  I've worked with a physical therapist (who has a doctorate) to develop a stretching and strengthening routine that I need to follow regularly.  This physical therapist (did I mention she has a doctorate?) has done presentations on MS exercise programs in which she emphasized the importance of strengthening, stretching, balance, and cardio exercise.

It's amazing to me the layman response I've gotten from people close to me regarding my spasticity.  I made the mistake of telling my family that my neurologist wants me to exercise more.  Their response has been to hound me for not spending enough time at the neighborhood fitness center and get on the elliptical machine.  When I tell them I need to adopt a stretching program, they tell me "that's not what your neurologist meant when he said exercise".  Some of their other comments:
- "You bend your knee some of the time.  What are you doing differently, thinking about it?
- "You need to go down to the fitness center and work with those trainers there.  They'll know what you need to do."  (Have I mentioned that I've worked with a physical therapist who has a doctorate?)
- "You need to start exercising regularly before you become a cripple."
- "All it takes is some willpower." (Would they tell that to someone in a wheelchair?)
- "Stretching's not going to do anything for you."  (Yup.  All of those neurologists and physical therapists are wrong.)

I try not to let their comments get to me - after all, they do mean well.  But their ignorance hurts.  Deeply.  It's hard enough to stay motivated through the setbacks and the pain and the personal battles.  But when the people you love - and who love you - are saying such hurtful things, it's tough to deal with it.  These people are supposed to be supporting you, and truly think that they are supporting you, but instead they're throwing up even more roadblocks.

MS can require a lot of time and attention, given all of the medicines, tests, medical appointments, physical therapy, etc. that is involved in treatment and wellness efforts. But when it comes to health issues, we have to be more than our disease. We need to remember that in addition to treating our disease, we still need to handle those "normal" health issues that everyone faces. By proactively addressing our total health, we will be in better position to address our MS-related issues. It's important to stay current on non-MS-related appointments, tests, etc., and staying current on those issues will help us managing our total health, which in turn helps us to deal with MS.

Appointments - Your neurologist should not be your only doctor. Have a primary care physician and keep that doctor in the loop on your treatment. Annual physicals can help you to understand your overall health and changes that could improve your life overall. And as a woman, I need to schedule my appointments for appropriate gynecological care. Don't neglect your eyes - make sure you're having regular eye exams. (I've let that one slip for too long....but I've got the checkup scheduled.)

Tests - There are other tests we need besides all of the fun (NOT) tests we go through in our MS treatment. Since my grandfather died of colon cancer, I've already had a a colonoscopy, and I know when I'll need to have my next one. As a woman, the annual mammogram is an important part of my health treatment - just had one, and they even scheduled my next one so that I'll have no excuse. My doctor also wanted me to get a baseline chest x-ray. And since my family has a history of high cholesterol, I get tested regularly so that I don't forget that I have to manage my cholesterol.

Immunizations - Just because we grow up, and just because most of us take injections for our MS, we're not exempt from having other shots. Do you know when your last tetanus shot was? And do not forget the flu shot - folks with MS don't handle getting fevers well, so getting a flu shot can help you avoid a terrible bout with MS symptoms.

We are more than our MS. We can't neglect our overall health while we focus on our MS. And when we manage our total health, we are better able to handle the challenges MS presents to us.

Today started out tough. I had to use the bathroom in the middle of the night, and my legs were not cooperating. I managed to get in there without falling, but I was glad that I've been wearing a Poise pad to bed so that I don't have to worry about bladder urgency issues. I was concerned about trying to climb back in bed, so I headed out to the couch. My legs were so stiff and uncooperative that I decided not to go to work before my physical therapy.

I did NOT want to go to PT. Then I realized how silly that sounded. The whole reason I need to go to physical therapy is because I am finding basic functions like walking to be a challenge. If I wasn't having trouble, then I wouldn't need to go to therapy. During the appointment, I told my therapist that I was doing backflips in my head because I was thrilled how well I was doing during the meeting. I felt it afterwards!

We also realized at PT today that my walking is worse than it was and that the foot-up has outlived its usefulness for addressing my foot drop issues. So now it's time to move on to the next tool in the tool chest, the AFO (ankle-foot orthosis). I'm going to be fitted for a brace to address the weakness in my ankle and help me more with the foot drop. The therapist had worked with me during my last round of PT and wanted to try and keep me from developing bad walking habits. I told her I'm already showing trends to one of them, where I swing my leg to the side instead of bending the knee and walking properly. So we're thinking it would be a good thing to get more aggressive in dealing with my foot drop before I've ingrained those bad habits and can more easily retrain myself to walk correctly.

It was also the first day of my IV solumedrol infusion. Yes, I take performance enhancing steroids. It's one of the favorite parts of my therapy, and no, I'm not being sarcastic. The worst part of the whole thing is getting an IV, and I've had enough needles that I'm not bothered by that. Yes, the steroids can leave a metallic taste in my mouth, but I can eat the Lemonheads candy I like to keep that taste out of my mouth. And my appointments are at a time that will likely prevent me from getting a heated massage chair to sit in during the treatments. But other than that, it's not bad at all. I get to relax in a recliner for an hour without hearing kids saying, "Mommy, Mommy, Mommy" or asking me every two minutes to get up and get them something. The nurses are great, and there are normally some pleasant people getting infusions who offer pleasant conversation. Today was terrific - the other women in the room were funny, chatty, and made the time pass quickly. Sheila made a point of finding out everyone's name and made a friendly comment to everyone else in the room to make them feel included (even if they napped through most of the chatter!). The nurses enjoyed the group too - they told us that the morning group had been quiet, and they enjoyed a lively bunch like us. After the infusion, I felt so much better, and there's already a noticeable improvement in my walking.

Tomorrow's a calmer day - I only have an IV appointment. The next PT is on Thursday. I want to make sure I get my home exercises in tomorrow, since that will help me get stronger. The one thing we all agreed on during our infusion chatter was that rolling over and letting multiple sclerosis win was not the choice for us. Maria is in her fifties and loaded with energy. When she started water aerobics, she could barely handle 5 minutes, and now she does well over an hour at a time. I did water aerobics in my 20s, before I was diagnosed with MS, and I was worn out after an hour, so I am so impressed by Maria's exercise regimen. Sheila talked about how she walks around her house without any aids and makes sure she regularly uses the stairs, since she knows that giving up on doing stairs would make it harder to use the stairs in the future.

They reminded me of the comment I made to my husband Tim early in our marriage - he signed up for better or worse, but he did not sign up for me rolling over and giving up. Even if I were tempted to give in, I could not subject him to a life like that and had to fight for him. And now that I have two adorable sons, I want to do as much as I can with them. I may not be able to run, but I can still do so much with them. I'm not the best field trip chaperone, but I did a terrific job reading to my older son and some of his classmates when we had a surprise reading event for the kids earlier in the year.

My younger son made the cutest invitation for his class Mother's Day lunch, and I will not miss that. I'm just wondering if this will be the third year in a row that my kids make me look good at the Mother's Day party. Last year, Dylan told his classmates that he likes playing on the Wii Balance Board with me, so the other moms thinks I'm an avid exerciser. The year before, Jason's card said that I'm prettiest when I smile, prompting the other moms to say, "Awwww". My boys remind me that they don't care that I have MS, they love what I can do for them and don't get too caught up in my limitations.

Well, it's been a week since the less than favorable neuro appointment, and it's been a hectic and tiring week.

Physical therapy has been, for the most part, good. I like my physical therapist, and unlike some of her clients, I do not refer to her as a physical terrorist. The good news is that physical therapists can teach exercises that don't require a lot of specialized equipment. The bad news is that those exercises take away so many of the excuses on why I'm not fit. It's all too obvious that the only person I have to blame is myself. I haven't been 100% perfect on getting my stretching done everyday. It's demoralizing to watch my 5 year old breeze through exercises that are a struggle for me. Since I'm out of practice, I'm sore, and when you're sore, the last thing you want to do is continue doing the things that make you sore.

The week has left me exhausted - I've spent Easter Sunday napping and resting on the couch instead of in church and with family. Hopefully, I'll be able to get a better grip on the fatigue in the upcoming week.

So, what's up this week? I've got 2 more physical therapy appointments this week, and I get to follow up on doing he exercises at home every day. This is also the week for five days of IV solumedrol infusions. While that makes my schedule crazy, I'd be lying if I said I wasn't looking forward to relaxing in the IV chair.

It's hard to live with MS. One of the challenges is remembering that we're not the only ones struggling to live with MS - our caregivers are challenged too.

As a caregiver, my husband normally qualifies for sainthood. He goes above and beyond when it comes to taking care of the house, taking care of the kids, and taking care of me. But he reached his "had it" point this week. He has needed help, but since I haven't been doing well when asked, he hasn't gotten the help from me, and it was all building up until he felt overburdened. And since so many MS symptoms are invisible, he just couldn't reconcile my comments about not feeling well with what he saw. For him, that situation was incredibly frustrating. There were harsh words and tears on both sides, since we couldn't see a middle ground.

Then I had a neurology appointment this morning, which confirmed that there is reasons to suspect that I've had a relapse causing the problems I've been experiencing recently. Normally, my neurology appointments are quick, followed up with a quick blood draw for some labwork and making my next neuro appointment in 3 months. Not so easy today. Instead of breezing through the tests, I had to repeat a few to see whether I could do better if I really, really concentrated. The discussion of how I've been doing since the last appointment included a lot more in-depth questions regarding walking, number of falls, bladder function, vertigo, etc. I had to go into a lot more detail than usual.

Then it was time for next steps. The self-proclaimed human pharmacy was given another bottle to add to the overflowing medicine cabinet. Baclofen is a drug commonly used by MS patients and others experiencing spinal cord problems who need to address spasticity. So that's three more pills a day to add to the already extensive list of pharmacology:

- 7 am - Ampyra, Baclofen, Lexapro

- Breakfast - Multivitamin, Calcium + D, Niacin, Cranberry, Fish Oil

- 11am - Baclofen

- 2 pm - Mirapex

- 3 pm - Baclofen

- 4 pm - Ibuprofen on Rebif days

- 7 pm - Ampyra, Mirapex, Calcium + D, (and can't forget Rebif 3 days a week)

In case you're wondering, yes, I go to a Pharmacy with a rewards program. Gotta get something back out of this, don't you agree?

So normally at check out we're just talking about setting up my next appointment. We did that, but also scheduled time with both the physical therapist and the MRI tube next week. I think my therapist would be pleased to know I'm looking forward to seeing him a lot more than that blasted tube. At least I only have a few days to dread the tube. As a claustrophobe, I am glad that there is such massive research supporting the diagnostic benefits of MRI and the usefulness of this technology in the treatment of MS, or it would really piss me off to get in the stupid thing. Then again, the IV valium helps to make it a more palatable situation, and it sure counts as a good excuse for not cooking that night.

I'm still not done today though. In addition to the usual labwork, it's time to check for antibodies. Has my body decided that the interferon I jab into my body three times a week isn't doing the trick anymore? We checked last year, and the answer was no, this drug is still a good solution for me. Given the suspected relapse, it's time to ask the question again. I just hope I don't have to jump through all of the insurance hoops this time like I did last year. They originally rejected my coverage claim, which had me freaking out at the prospect of shelling out $1000 bucks for the test, but I successfully appealed.

I also get to look forward to scheduling 5 days of solumedrol infusion. That may sound bad, but it's actually one of my favored parts of treatment. Sure, I get jabbed with IV needles 5 straight days, but then I have an excuse to veg out in a heated massage chair for an hour. I usually take advantage of the chance to catch up on a good book. Plus the IV nurses are awesome and do what they can to make the situation as tolerable as it can be. And the other infusion inmates are a quite friendly bunch.

Then all was left was giving the details to the loved ones. Had to call Mom, since she is my friendly chauffeur on MRI day (since Valium and operating heavy machinery don't mix....you can get into heavy machinery, just not drive it). I had texted hubby about the disappointing results, but he called to get a breakdown once the appointment was done.

There's nothing like a less desirable diagnosis to bridge the gap between a frustrated patient and a frustrated caregiver. He tenderly explained to me that when he sees me, he doesn't see a disease, he sees the girl in the sexy red dress that he fell in love with. My heart can't help but ache for him - if I have a hard time dealing with this unpredictable disease, how tough is it for him to deal with my having such a sneaky and volatile condition? I know I struggle with not being identified by my disease and minimizing the limitations it places upon me, so how can I criticize him for doing the same? Our poor caregivers have to walk the fine line of helping us while we need them yet giving us the room we need to do what we can for ourselves. I know it's confusing for me to balance what I can do vs. where I need assistance, so it makes sense that he struggles with the same challenges. The challenge he's struggling with is helping where needed while still thinking of me as a person first, not a disease.

I'm still here, and I'm still fighting.

I use my cane more often these days. Don't get me wrong, I'm still fighting...I'm just picking my battles more carefully. When I have my cane, I've got one more thing to help me avoid falling when I go off balance. And since my husband listened when I told him I want a cool cane, it's a touch of style. Ordinary canes can look sterile, but my multicolored one adds a touch of flair. Plus, it gave me an excuse to buy a cute Vera Bradley bag I wanted, since the bag has outside pockets that are the perfect size for a collapsible cane. Now I can keep the cane nearby in case I need it, but I look good in the process.

I also have a handicapped placard now that I use at work and occasionally when I'm out and about. The parking rules changes at work, and I needed to have the placard to be allowed to park on the first floor of the parking deck. At first, I was grumpy about having the placard, but I'm so grateful to have it now.

The common thread to both of these tools is energy conservation. Fatigue is an enemy for many of us who have MS. As a working mom, I'm even more aware of the need to make sure I'm using my energy where it matters. So yeah, I'll use a scooter in the supermarket or on vacation in Disney, so that I have the energy to get things done and have fun. I'll read books and listen to webinars that have tips for managing my fatigue so it doesn't manage me.

I could focus on what I can't do since I have MS, or focus on what I can do. Make lemons out of lemonade. So I'm not the best choice for chaperoning a school field trip. But that didn't stop me from reading to my son's class (and since I love using silly voices when I read stories out loud, I was quite popular with the kindergarten crowd). When we went to Disney, I wasn't running around with the parks like a crazy woman, but I joined my younger son on his first kiddie coaster ride.

I can even turn some parts of my conditions into advantages. Any parent can tell you how chaotic life with kids is and how many demands are made on your time to volunteer or get involved in extracurricular activities. It's easier for me to be selective on what I will or won't volunteer to do, but there are still plenty of ways for me to get involved. And since I don't want to overextend myself, I'm less likely to overcommit my kids. I know some parents who have their kids in a different activity every night and (at least) one on weekends. I just don't have the energy to shuffle them around as much as I might be tempted to do, which I think is good for them too.

I did some physical therapy in the fall, and my therapist said that I'm pretty high-functioning for someone who was diagnosed 9 years ago. But I know I could be doing better if I got some good habits going and took control of my health. The biggest challenge is pushing ahead even when I'm fatigued.