Monday, April 25, 2011

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.

Sunday, April 24, 2011

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.

Friday, April 15, 2011

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 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.

Saturday, April 09, 2011

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.