Ouch!

I've been taking Gabapentin or 0ver a month now. Gabapentin is a medication in pill form. I take one pill, three times a day. It was working great in the beginning but now it doesn't seem to be working as well as it was. The pin point of my back pain is just above the bottom of my tail bone, and then it radiates. There has never been an injury associated with the pain so my neurologist is assuming the pain has to do with nerve damage and the way the MS is displaying itself. The pain radiates up my back and has been making the muscles in my upper back and neck sore. It is also causing a lot of pain in my hips which can stop me in my tracks.

Along with the Gabapentin, I have continued to take Tramacet (again a pill but you can take it every 4-6 hours as needed). While it's more of a side effect of the medication, it helps a bit with my fatigue. Nothing else ever has which is part of why I continue to take it. It also helps with the overall pain.

I'm still waiting to hear back from the Tysabri Coordinator about when my start date is. I was hoping it wouldn't be too close to the holidays just in case I have an adverse reaction. Hopefully all will go well and that won't happen.

Tysabri, where is it?

Almost two weeks ago, I was starting to wonder why I hadn't heard anything yet about my date with Tysabri. I thought by now bring it on would have already been brought.

I just had to wonder a little louder I guess because the next day I received a call from the wonderful secretary at my Neurologist's office telling me the Tysabri coordinator had been trying to contact me. She gave me the phone number of the coordinator and I gave her a call. I mentioned how I thought maybe she had my phone number wrong as there had been no messages left on my answering machine and I would have picked up if I was home. Seems as though you have to give them permission to leave a message on your answering machine. Um, ok, how do you expect me to do that if I have no clue you've been trying to call me?! We had a good chuckle and permission was granted.

Anyway, things got sorted out and the ball got rolling. She asked me a few questions and said an insurance coordinator would be calling me to determine how I was going to pay for the medication (since first born is supposedly not an option). Thankfully, my husband has great insurance otherwise it would be a whopping $3300 CDN per transfusion....GULP!

The insurance coordinator called me the next day or so, asked me more questions, had a conference call (party in the afternoon, wahoo!) with my insurance company to make sure I really, truly could get the thought out of my mind of remortgaging our house over and over again.

I hadn't heard much since that call a week and a half ago until I received two calls the other day. One was from my insurance company confirming what type of setting I would be getting my transfusion in (pool side wasn't an option, darn!) and then a strange call the other night at dinner time form some delivery company saying they had a package for me and wanted to know when I'd be home so they could drop it off. Since when do delivery people call to ask when it's convenient for you to deliver a package?! Anyway, the package should be delivered today or tomorrow and then I'll be able to give you all the juicy details of what might be inside the surprise package.

Looks like things are moving right along!

Gilenya or Tysabri? That is the question.

It's been a hard last few weeks for me but I'm trying to keep my spirits up.

I seem to be having a lovely flare-up -- hot back, tingling in face, feet and fingers on and off, dizziness, flickering feeling in my eyes, heavy arms, my whole body feels heavy and blah and I just can't find the energy to do much, heaviness in ears (not sure how to explain it but it's like they need to be popped), feeling like a film is over my eyes (I'm thinking maybe it feels like I'm wearing contacts but I've never worn them before). Oh and, can't forget, EXTREMELY fatigued! The flare-up has been a slow progression and seems to keep building. The way I've been feeling, how it's coming in layers and staying longer, isn't like most flare-ups I've had in the past.

I went to my neurologist a week and a half ago hoping, gasp!, for some IV steroids. I've never felt like the steroids have done much good for me (though my mom seems to think otherwise and she can probably judge me better than I can from the outside), and I haven't had steroids since 2005 when I had optic neuritis, but I was starting to feel a little desperate. My doctor didn't think steroids would do much for me at this point and started me on Gabapentin (for the constant lower back pain I've been having that you can read about here), told me to start taking 4000IU of Vitamin D and sent me for a MRI and, because the injectables haven't been good to me the times I tried them, he suggested I do some research on Tysabri and Gilenya (Fingolimod). He didn't want to voice too much opinion yet on either as both can have intense side effects including, gasp again!, death. The joys of having MS....ugh!

So, that's where I am now. I've been reading as much as I can on both but I'm finding there's not much information about people in Canada who have been on either. I keep going back and forth as to which one to try first. One day it's Tysabri. The next day it's Gilenya. Gilenya has only been out for a short while (Sept 2010), and I think even a shorter while in Canada, so there's not much long term (past a year even) information about it except for those who were in the trial studies. I've recently heard something about skin cancer with patients who have been on Gilenya but I need to do more research on that. Tysabri seems to be more well known in the US and other parts of the world but I haven't heard much about it here in Canada. It was pulled off the market for a while due to a few deaths caused by PML, also known as Progressive Multifocal Leukoencephalopathy (a rare brain infection), but it came back on the market a few years ago. Needless to say, it's a tough, tough, TOUGH decision!

I have a few questions for anyone who has read this far and wants to comment -- have you been on Tysabri and/or Gilenya? Are there any moms out there or people between the ages of 30-40 years old who are on either of these medications? What are your thoughts? How did you feel the first, second and third month after starting the medication? Do you notice any positive changes and, if so, how long until you felt these changes? I have lots of questions on both so feel free to give me as much info as you like, or you can email me at keeponsmyelin@gmail.com.

Hope everyone has a wonderful Wednesday!

Marble-riffic!

Bella and I stopped by the mailbox yesterday and received some very special mail. Connor's painting arrived! Bella was super excited and has been carrying it around with her everywhere we go.

Thank you, Connor!

You can visit Connor's website at Marble For MS.

first post about Marbles For MS here.

My First Guest Post!

Me with my beautiful kids

I was thrilled when Angela (from Gracie's Mum: A story of a Mum with MS) asked if I would be her first guest post. You can check it out today on her blog!

MS Walk

Yesterday was the MS Walk in our area. Did anyone get a chance to make it out or, if it hasn't happened in your area yet, will you be walking this year?

I'm a little disappointed that we didn't participate this year but it has been a busy few months. Our friend was diagnosed with Leukemia back in October and has been doing rounds of chemo while waiting for a bone marrow match, which was recently found -- YAY! He and his wife have two young children, one of which is Luke's friend, so we've been helping with having him play over here and making dinners to send over. Friends and family held a fundraiser last month to help keep them going. The turnout was phenomenal and the support to help their family has been overwhelmingly wonderful! I've met a lot of great people along the way.

I've had a flare-up going on for the last few weeks and my back hasn't been in great shape either so I'm not sure walking 5k right now would have been the best idea. I've been going to a chiropractor since the beginning of March. It's helping a bit but not as much as I had hoped. I'm going to give it a bit more time and see how it goes.

I'm hoping to bring Team Keep On S'myelin! together again next year. We did a great job last year by raising over $3000!

I am truly thankful for all the support I have.

Here are some pictures from the 2010 MS Walk...

Team Keep On S'myelin! shirts

Bella ready to go

and we're off!

A little stop along the way

Sheba and I with her family and my hubby

My amazing team -- Team Keep On S'myelin!

Marbles For MS

I love when kids do something so wonderful for others.

Marbles For MS

Thank you, Connor!

No news is good news, right?

As I mentioned, my last MRI came back saying that they couldn't quite get a good view of my Common Bile Duct on the scan so it was suggested I get an ultrasound. Great, I go in to get my back checked out and now they're going to find something else?

So, on March 1st, I went for a scheduled ultrasound of my abdomen to a hospital that I've never been fond of. The hospital I usually go to for tests was booked up for a few week. I could either wait or I could go in a few days to the other site. Big breath in. It's just a routine ultrasound. In and out, right?

I had no clue how long I was going to be there. Thirty minutes seemed too short. Even an hour was questionable. Paying for the whole day ought to do it.

I walked in and right then and there remembered why I wasn't a fan of this hospital. The walls looked old. The lights were dim. The ceilings were low. I felt like I was in a flea market as some guy had set up shop in the tiny front entrance selling clothes, bags, odds and ends. There was no nice information booth to register at or ask for help. I obviously looked lost as a lady who worked at the hospital asked if she could help me. She pointed me in the right direction and off I walked down the hall to a tiny little make-shift check in room.

After handing in my heath card, I was directed to sit in the open waiting room with a few other people watching the news on the wall TV provided for your entertainment. Only a few minutes passed, my name was called and off I went into a small little curtained off area where I was asked to change into a gown.

The hospital bed barely fit inside the little box of a room. The lady doing the ultrasound seemed nice. We didn't really talk much except for when she told me to turn this way and that.

It's amazing how many things run through your head while the test is being done -- why did you stop at that spot? what is she typing that? what's that beep for? why more gel? what can't she see? why does she need me to shift? All these small moves that seem so monumental at that very moment.

And that was it.

She said I was done and that the results would be back in about a week or so, or maybe 3 - 5 days. Why did she change how long the results would come back? Did she see something?

I looked at my watch. I was in and out in 40 minutes. I had a whole day left on my parking pass and not one sole in the parking lot to give it to.

Last Friday, four days after the ultrasound, I decided I would call my doctor and tell him the ultrasound was done and to call me to let me know if they had received the results or not. I didn't expect a phone call back that day, but Monday came and went and still no call. I called back Tuesday, get the answering machine, left a message mentioning I had already left a message on Friday and to call me back.

Why aren't they calling me back? There's something wrong and they're trying to figure out how to tell me and what the next steps will be, that's it, I'm sure of it.

Today is Friday, and I still haven't heard anything back from my doctor. Now I'm hoping that no news is good news. I remember I told the girl who checked me in for the ultrasound if she could also send a copy of the report to my neurologist. It's worth a shot. I gave my neurologist's office a call. The receptionist, I love this woman, picks up, checks my file, comes back to the phone, "It's all clear", she tells me.

The.best.words!

My Date With Mr. MRI

I mentioned in another post how I had a date with Mr. MRI. Well, the date has come and gone. Now for the deets as I'm sure you've all been anxiously waiting...

Multiple Sclerosis has always been just a another bump in the road of life for me, but I'll admit it, some days aren't as sunny as others.

In December I had my regular check-up with my neurologist where it was suggested I get an MRI done of my lower back as I've been having a lot of intense lower back pain lately. I had the MRI done last Wednesday night and received the results less than a week later (holy fast batman!) by way of a phone call from my doctor.

My doctor said the showings are all part of having MS but after getting the report by fax all I seem to be focusing on are the words...moderate degenerative disc and facet disease, minimal retrolisthesis, small disc bulge with spondylolisthesis, common bile duct seems somewhat prominent given the age of the patient, prominent distal CBD. Ultrasound is recommend for further evaluation.

Even with it saying moderate, minimal and small at the beginning of the findings, what does any sane person do? Check Google of course (should have taken my own advice not to do that)! Now I have proof when I say I feel like a 35 year old trapped in an 80 year old's body.

I noticed in the report that it mentioned an ultrasound be done because of something to do with my Common Bile Duct that they couldn't quite see on the MRI. Since my back pain has become consistent these days rather than coming and going, I have an ultrasound booked for this coming Tuesday.

Today's a new day....onwards and upwards!

Knock Knock

Who's there?

Um, ya, I think more coffee is in order..hehe.

But there will be some knocking going on later. My back has been specially selected to be serenaded by the sounds of knocking composed by Mr. MRI himself. Should be a lovely evening!

Oooo, I wonder what I should wear?!

MS: Going With The Flow

I haven't talked much about my MS lately. I think because I've been trying to hide behind the good to make me feel better, focusing on the positive things life brings my way. But, lately, the pain is getting to be too much. It started at the beginning of the year in my lower back, and that's where it has stayed. It comes and goes -- sometimes to the point where I can barely move. Lately, it has been constant. I went to the doctor, had an xray, bloodwork and bone scan -- all came back normal which is great but doesn't help understand why I'm having so much pain. That's when my doctor prescribed a medication to dull down the pain. It's the first medication of many that I've tried over the years that has actually worked some.

So, that's where I'm at with my MS. I'm still at the same place I have always been except with more pain. Thankfully, the major MS attacks I've had previously haven't showed their ugly face lately. Probably because I'm not working and can manage my MS better.

To keep up with the positive thinking, hope everyone has a joyous weekend! I know I will spending time with my family. Any fun things you'll be doing this weekend?

Tuesday Ramblings

[The Toronto Star article on The Bee's Knees blog]

Last night I wrote a list of things I want to do today but instead I'm sitting on the couch trying to take in as much rest as I can. I made myself some coffee, read the Toronto Star and started reading a blog called The Bee's Knees after reading an article about it in today's newspaper (it inspired today's post). Today is the last day for a long while where I will get to do this -- have time for myself, for my body to rest when it needs to. School is out, it's Luke's last day at daycare and while other mom's are probably a bit excited to share some extra time with their kids this summer, all I can think about is how am I ever going to keep up with my child? I feel bad keeping Bella in daycare this summer but I don't know how I would ever manage keeping two of them busy without finding myself on the floor gasping for energy. It's not that she completely hates daycare but I know she would rather be at home. The thing is, when she's at home all she wants to do is cling and hang off me -- it's completely draining at times but I do love the cuddles and how happy she is when she's doing it.

I had my neurologist check-up this month. I always walk in with a smile, and did this time too, but when he asked me how I was I flat out told him I felt like crap. I had to stop the Betaseron injections a few months ago. It was draining me and didn't feel like it was making a positive impact on life with Multiple Sclerosis. So, now I'm trying a medcation called Cymbalta which is supposed to combat nerve pain. I started with a half dose and worked up to the full dose. It's been just over two week since I started taking it and while I'd liked to say the drug is working I'm still not quite sure. I never thought I could be any more tired than I usually am but this medication has me napping. Yes, NAPPING -- something I never do and never have been able to do. I've been going to bed early too. I guess you could say I'm truly tired rather than my usual drained self. The weirdest thing that has happened while being on this drug is the yawning fits. About six to eight hours after taking it I start yawning uncontrollably. At first I thought nothing of it but them people started noticing and then we started timing it. Like clock work I tell ya! I've heard this tiredness side effect will subside which is something to look forward to. Now that I think about it, Cymbalta might be working a bit. Let's hope because nothing else I've tried ever seems to do much.

My last sip of coffee is done. I best get on with my day. Enjoy yours too!

It's been awhile

April 8, 2009: the day this blog was born.

Almost two months ago, I watched Keep On S'myelin's first Blogiversary roll by...a silent woot! woot!

I keep popping in, starting a post and then pulling back. I didn't think I would like blogging. I didn't think I would have anything to say.

What would I write about? What would be the point?

Point is, I love blogging and I love reading all of your blogs too. Problem is, it was becoming time consuming. I loved blogging more than doing what needed to be done.

My garden is starting to bloom.

I bought a new end table for a steal at Pottery Barn.

I'm still as tired as ever but hanging in as always.

I've been battling Pokemon and Polly Pockets and trying to keep the ship afloat.

All stuff I want to blog about and hope that I can do again soon.

Hope everyone is doing well, if you're still reading!

I am...

registering Team Keep On S'myelin! for the Ajax-Pickering MS Walk on April 18th. Anyone want to join us?

Spasm City

I don't know if this is an MS thing or if my face is bored and has decided to dance to its own beat but I'm having some serious eye spasms over here. It's like pop rock central (loved that candy as a kid)!

You know the Cadbury commercial (which I love) where the kids are on the couch waiting for their picture to be taken and then suddenly their eyebrows start to bust a move? I think I could totally be the stunt double for one of those kids right about now, no editing required.

Multiple Sclerosis In Style

I'm still not feeling all that great but I'm chugging along and keeping upbeat!

The left side of my face (from my forehead to my chin, down my neck and even into my ear), down the inside of my left arm from my shoulder to my pinky and all along the left side of my torso, wrapping around my left rib cage feels like I've been injected with some kind of freezing agent like Novacaine. I don't remember having this feeling in my ear before. It's a bit weird. The feeling also wraps around my left eye but it's not impairing my vision thank goodness.

My whole body feels worse when I'm sitting still. I guess because when I'm moving, I'm busy and therefore don't have time to think about it. It's hard to stay busy when you don't have the energy in the first place. The whole episode is quite draining. The perfect excuse to veg out!

I spent a short while yesterday having some me time. I picked up this necklace at H&M for under $6!



And these boots from Sears were on sale for 40% off -- a perfectly flat, yet stylish, mom-friendly boot!



Enjoy your weekend!

Multiple Sclerosis Attack/Flare-up

I'm pretty sure I'm having an MS attack, a flare-up. My left side of my body feels weird -- a numb, tingling feeling all across the left side of my torso (rib cage), under my left arm to my pinky finger and now I feel it in the left side of my neck, jaw and cheek.

I usually just ride it out but wondering how others deal with their attacks/flare-ups?

We will end MS

Every so often I'll see an awareness message on TV about Multiple Sclerosis -- the one of the mom sitting in bed while the daughter brushes her mom's hair comes to mind. The other day I saw one for endMS.ca. One of the features on the site is a scrapbook (here) of videos, photos and stories filled with inspiration and determination -- some positive words to warm the heart!

Keep on going!

One of my worries -- if I stop, I might not start again.

I take a break when I need to and do as much as I can, when I can.

Always look forward and keep on going!

Happy Thanksgiving!

Multiple Sclerosis: Together, we can beat this!

The day I lost who I was, was the day I found who I am.

Multiple Sclerosis has brought out strength in me that was hiding and determination I never knew I had.

It could be your mother, father, sister, brother, grandparent, aunt, uncle, cousin, friend, friend of a friend, teacher, caregiver, driver, delivery person, the person sitting next to you on the bus -- even if you aren't currently aware, someone you know has Multiple Sclerosis.

Yesterday's curse is today's blessing. For me, having MS has brought out the fighter in me. It has taught me to not let things get in my way, to stay strong and not look back. I'm not sure who said it first but as the saying goes I may have MS but MS doesn't have me.

If I can keep going, so can you!

Together, we can beat this. Together, we can change the face of Multiple Sclerosis and be the voice it needs. Together, we can make it happen!