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.

FUMS.

That's my new mantra. I've realized that I've been too nice when it comes to MS. I haven't complained, and I haven't taken charge. MS doesn't play by the rules. It doesn't take turns, it cuts in line, and it will eat the last chocolate chip cookie on the plate.

In the early days of MS treatment, patients were expected to rest, to play the waiting game while MS stole what little vitality they had left. Now the advice is different - exercise and stay active if you want to still be active.

Somewhere along the line, I forgot how to fight. I forgot how to get angry enough to act. MS exploited that opportunity perfectly. While I was making nice, MS was helping me become an out of shape victim who falls regularly without a cane.

So I'm letting myself get angry. I'm encouraging myself to fight back. When I want to swear at this disease, I'll swear at this disease. And my new mantra can be summed up in 4 letters - FUMS. Sometimes, I'll even yell out what the F stands for.

Today is step one in the plan to take back my life. I've got an appointment with a physical therapist. My goal is to put together an exercise program that will help me get back in shape. I have MS, but if I'm taking an active role in getting myself in the best shape I can be, then I'll be better equipped to fight it.

You may have won the first set of this match, stupid disease, but look out for me now. I'm going for broke in this second set.

It's been over a year since my last post. Out of sight, out of mind. At least, I wish that was the way MS worked. The biggest thing I've learned is that I can pretend that I don't have MS, I can ignore it, but it's going to make its presence knowne whether I want to acknowledge it or not.

Living through a period with no exacerbations is not necessarily a sign that the disease isn't having an impact on your life. SO my last two MRI's look great.The annoying part of the illness hasn't been the attacks, it's been the day by day deterioration. It's so subtle, when you let yourself give into the fear and play too cautious. If you spend too much time playing it safe, it's not long until that's all you're capable of doing.

It's been a tough two weeks. I've been using my cane more often, but two times I try to walk without it, I fall. Publicly. Embarrassingly. Just when I've thought things were fine, I land on my backside. I've had to explain to way too many people why I have a cane. I wasn't keeping my illness a secret, but I wasn't publicizing it. And then the change in parking procedures at work makes me realize that it's time to get the handicapped placard. Damn it, I'm not handicapped.

I'm pissed. That's a good thing. Instead of sitting back and letting this illness continue to subtly rob me bit by bit, I'm fighting back. I have an appointment next week with a physical therapist to work on my gait and to start an exercise program. After all, not all fatigue experienced by MS sufferers is because of the MS. Some of the fatigue is caused by being out of shape. Just because I have MS, that doesn't mean I'm immune to the issues that healthy people deal with too.

I'm watching the NCAA Tournament, and I'm watching a feature on Siena's Kenny Hansbrouck and his dad, who has MS. I was glad when they won their first round game, and I am going to be cheering like crazy for them in round 2.

Even though I'm doing a lot better than many people with MS, I still have to deal with the ugliness of this disease. Today's word is constipation. I warned you folks, this disease ain't pretty. It presents a cruel dilemma: on the one hand, drinking plenty of fluids can help you prevent dealing with constipation. But MS also likes to play with your bladder, too, which can make you hesistant to keep pouring liquids into this quirky body part. So which is better...wetting your pants or having cramps, noises, and smells?

So now the emergency kits has a new addition. I've got the spare pants for the bladder issues, and the laxatives for the bowel. Since it's a weekend, I read up on the MS Society site for ideas on which ones to try.

I know, I know - this is not a pleasant topic. But when you're talking about MS, not many topics are.

Having MS can make routine tests turn into a double-edged sword. I had a colonoscopy last week, and while one of the doctors was explaining the procedure to me, he mentioned that it could lead to a flare-up of my symptoms. I didn't think much about it at the time, but I did remember those words a few days later as I was dealing with some major fatigue. I had wondered why my right leg had been feeling bad, and I wondered why I was so tired even though I had a good night's sleep and a morning nap. When I remembered that doctor's words, I understood.

The colonoscopy is one of those tests you have to prep for, too. I was on a liquid diet the day before the test and had to chug a solution the night before and morning of so that I would practically live in the bathroom. But that part of the prep was a piece of cake. The worst part? No blood thinners for three days before the test, which meant no ibuprofen on one of my shot days. I had to deal with the side effects of the Rebif that night, which was not pleasant.

Had a good checkup with the neurologist this week. He wants to see me every 3 months to check on my progress, see if the Rebif is working for me, and to get my blood checked to make sure these meds aren't killing my liver. He called back the next night to tell me that this blood test came back just fine. They all have.

I still laugh when I think about my mother's reaction to an article she read in the paper about Avonex being bad for the liver (back when I was taking Avonex). I just rolled my eyes and said that wasn't news...that's why I was having checkups every three months, because ALL of the drugs can be bad for the liver and needed to be monitored.

Sure, the disease-modifying drugs can be bad for the liver...but MS can be so much worse for a lot more than the liver. It's a matter of perspective.

The weird thing about having MS? I feel a HUGE sense of relief when I'm not feeling well and know it's because of something other than MS. Like this summer when I broke my toe - I didn't break it because of MS balance issues, I just broke it because of normal clumsiness.

I felt like crap earlier today. I was tired, my brain was scattered, and I wasn't in the mood to get much of anything done. I started to worry for a little while...until I noticed how much chocolate I was snarfing down. Oh cool - it's PMS! I was actually psyched to realize I had PMS, and it was a lot easier to be nice to myself.

It's been awhile since the second opinion, and things have been fairly routine. Haven't had any major issues, but have had to deal with some of those annoyances that come along with MS. But I've learned to adapt. For example, I've learned that I better have a spare pair of pants and underwear at work, in case those unpleasant bladder problems led to an accident. It's only happened once at work, but at least I could just grab the spare clothes, change quickly in the bathroom, and get back to my day.

Winter brings a double-edged sword. The cold weather is much easier for my system to handle than the warm, but it is challenging to layer up to go outside and then walk into a heated room with all those layers still on my body. The worst thing is that winter brings colds and flu, and my body does not handle fevers well.

I am relieved, though. After wrestling with whether or not I was on the proper treatment, I've had two doctors agreeing that I should be staying the course. Given how I have felt over a period of time, I'm in agreement.

Tomorrow, I'm getting a second opinion. It was my neurologist's suggestion that I have someone else weigh in on my case. He's been treating me for 6 1/2 years, so we're getting someone else to check me out now too. So tomorrow I drive nearly three hours...after I pick up a copy of my MRI at the radiologist and my records at the neurologist. And on the normal side, I'm getting my cholesterol checked before I head out of town.

I've never been graceful, but these days, I have an excuse for walking like Frankenstein. On the plus side, I like being able to explain why I'm clumsy...instead of just saying that I'm clumsy.

I have another doctor's appointment at the beginning of May. Part of me dreads that the neurologist is going to bring up Tysabri again. Yes, it's beneficial for lots of folks, but it's also been fatal. I can't get beyond that. I can't convince myself I'm bad enough off to have to go that route.

An Update

I've been on the meds for a few months, and so far, so OK. Things haven't been great, they haven't been bad. My side effects haven't been horrendous, but there have been times that they've been able to shut me down for awhile. I still have to get used to listening to myself and take the rest when I need it, where I need it. When I pay attention to my meds and take the well-timed nap, all is well.

My health problems aren't related to my MS as much as being the mother of two small toddlers. My back is killing me these days! Having a 2 year old and a 10 month old wreaks havoc on the healthiest of backs, and my back wasn't healthy to begin with.

Now it's time for me to recommit to my health. After months of bad food, insane work hours, it's time to take care of myself so that I can take care of others. After all, I can't wait around for everyone else to take care of me, and I'm proud of the fact that they don't have to take care of me...too often.

The Aftermath

Well, I did it. I started my medicine again last night. And I'm OK.

After the training, the nurse told me to take all the time I needed before actually giving myself the shock. I surprised everyone by taking about 30 seconds to do it. I knew that if I just went ahead and did it, it would be better. The longer I stewed about it, the worse it would be.

I did suffer some side effects, but they weren't nearly as bad as they were the first time I took the shot. I'm wondering if that was because I wasn't in the midst of an attack this time. The first time I started the medicine, I was in the middle of an attack, and it was a painful attack. I was also dealing with the stress of being recently diagnosed when I did this the first time.

I was actually relieved to have some side effects, since my doctor told me that's a sign the medicine is actually working. But at the same time, the effects weren't that overwhelming. I didn't get a very good sleep last night, but I had a great nap this morning. And I don't feel drained at the start of my week, so I have a feeling this will work out fine.

Shot Happens

Well, this is it - shot day. The first in a long series of shot days.

I keep thinking back to my last blog entry - specifically, the last word in that entry. I know reading that word will probably spark some strong reactions, particularly from people who know me. There will be some shock and some disappointment. I thought about whether or not I should edit that entry and take the word out. I decided against it.

Yup, Amy swears. And Amy uses some really, really bad words when Amy swears. But that word was an honest response. It wasn't a pretty response, but that word came into my mind and out of my mouth that night. I'm human. Sometimes I don't react well to situations. That night, I didn't.

Some people might be disappointed in how I responded to it. Fine. But I'm not going to pretend that everything is sunshine and roses just because it makes others more comfortable. The truth is that this stupid illness isn't always pretty, and how I handle it isn't always pretty. Save the sainthood for someone else.

My husband gets it. That’s one reason why we’re still going strong after 9+ years. Even though I picked a fight with him that night – his birthday – he understood my feelings of powerlessness, of rage, and he forgave me. He knows that life with a chronic illness isn’t always nice and it isn’t always fair. But he takes those words “in sickness and in health” quite seriously. He also knows who I am and loves me anyway. That’s the way he is.

The worst feeling in the world for me is feeling powerless. I hate bucking up against “there’s nothing I can do”. It spawns anger, rage, frustration, fear…a whole whirlwind of emotions. On the other side of things, the fact that I’m not powerless is what’s getting me through the whole shot thing. Sure, giving myself an injection isn’t the most appealing of options. But it is an option. I’ve made a conscious choice to do something that will be, in the long run, the best thing for myself and my family. That doesn’t take away the pain or the side effects or the frustration that I won’t have the energy to do everything I want to do. But it gives me power. I’m not sitting here like a sitting duck, waiting for the next attack to pop into my life. I’m fighting back.

Speaking of fighting, that’s what I started to do Friday morning (well, other than the fight that Tim and I had Thursday night). The phone line for the support hotline opened up at 8:30 am, so I was on the phone with them at 8:31, explaining my situation. In less than half an hour I got a callback saying that there was another nurse available to honor the appointment. And when I talked to that nurse later in the day, we clicked. I immediately felt at ease with her, and for a brief period of time, I was actually looking forward to tonight. *snort* That wasn’t what I was expecting. So in the end, it’s all working out.

Oh, and don’t feel bad about my husband’s birthday. We went out to dinner last night and had a phenomenal meal. It certainly made up for the night before.

I’m still anxious about tonight. I’m certainly not looking forward to the shot, or the aftermath. And the best word to describe my reaction to the upcoming side effects is terror. Like I said, I’m not a candidate for sainthood here. But I’ll get through it.