Worst day yet

Yesterday was a very bad MS day in my books. Let me tell you about it.

I woke up from a solid nights sleep and thinking, this should be a good day. Nice uninterrupted sleep. Ah....Then I crawled out of bed...Oh no.. this might not be good...

I was dizzy most of the day. When I'm dizzy it's not like the room is spinning, it's more like I was just shaken and I'm trying to steady myself. We had a brunch date at 11:30 so Mark took care of Grace while I made her lunch, bottles, got showered blah blah blah...By the time Mark went to shower I was wiped. I typically have a sit down and start feeling better. And I was looking forward to the car ride because of the AC. Little did I know this would end up being my life saver later!

At our brunch, it was busy, lots of people talking and visiting. I always have a wondering eye too, even with family when it comes to Grace. This takes energy! She has energy! It was warm in the house and outside was warming up very quickly as well.

After I ate I was really feeling drained. I sat down for a rest but I was just not getting better. I finally grabbed Grace, sat down to change her diaper and told Mark that it was time to go. Poor Mark. You see he was talking with his mom and I trying to make plans for today. I could only focus on one thing at a time and I looked at him and said "Honestly Mark, I don't give a S*** about that right now. I can't think straight." I'm sorry hun. Then I started to cry. I was hot and flustered. I felt bad and embarrassed. Grace was squirming. People were all over and wanting my attention. I broke down and think I had a panic attack.

Once in the car, Mark pumped the AC as high as it would go and we left. It took me a good 30 minutes to calm down. Wow.. didn't like that at all.

To make matters worst, later I sat Grace on the potty and I just couldn't cope again. I called for Mark but he didn't hear me that time. Again with the tears and hyper ventilating. For those of you who know me...I don't tend to cry so I wasn't liking the crying on top of being a mess. Grace snuggled me and tried to make me feel better. I love her! Again, it took a good 30 minutes to get steady again.

I never want a day like that again.

Now I'm getting ready to go to the hospital for my eye checkup..I'll write tomorrow!

Hospitals...

Ever wonder why there are so many services offered in a hospital but you have to go to different hospitals for certain things?

I think they should make the mother of all hospitals and have everything in one place.
Why do I feel this way? Let me tell you!

On Monday I will be going to the Rockyview hospital which is about 40 minutes away during rush hour. At it will be rush hour... Here I will be seeing Dr. Costello who is my optical neurologist. I will be doing follow up testing on my vision in my left eye.

On Tuesday I must go to the Foothills hospital which takes 20 minutes to get there. (This is in a car by the way, sometimes I may need to do this by transit) This is where the MS Clinic is located. Here I will meet again with Dr. Costello. This time it will be to discuss only my MS. I will be getting my prescription of Copaxone and tell her my history, all my past and present symptoms. I presume she will ask if I would be in a research study again but on this I am not sure!

Now you understand my "All in one hospital" theory!

Thanks Ron & Mark for taking me and Donna for watching Grace!
I'll keep you posted!

Skipping my remedy

Last night I called Donna who is my mother in law as well as my homeopath.
Over the last few weeks I have been seeing red spots in my left eye. This is the eye that previously went blind. For this symptom I have been taking Phosphorous as well as my MS remedy.

For the past month I have had many pregnancy symptoms. Don't panic! After several urine tests as well as a blood test I am not pregnant.

My thought process was that with MS when pregnant all symptoms often go away for the duration of the pregnancy. In homeopathy you are treated by symptoms. Certain remedies are for certain things depending on the way you feel. So naturally I started thinking that the MS remedy could be making me feel this way in efforts to put an end to the MS symptoms. We decided to stop the MS remedy last night and see what happened.

Well...let me tell you. That was a mistake!
This morning I woke up very tired, I was up in the middle of the night in pain, I am dizzy and pretty much "zoned out".

In homeopathy this is called a prooving. This indicated that the remedy is working and the right one for me at this time.I now know for sure that the MS remedy taken nightly is helping me more then I realised!

Tonight I will be taking both remedies and see how tomorrow goes!

And the answer is...

I will try to post a little quiz every week because I think they are fun!

The answer for this week is 50%.

Without treatment the chances of needing walking assistance in the next 20 years is half and half! Pick your odds right!

Melt my heart!

Happy thought today OK!
Think about what warms your heart. What give you that warm and fuzzy feeling?

When things go quiet in my house I know it's one of two things. Either Grace is up to no good or sneaking a poop in her diaper. I say sneaking because 75% of the time she goes in the toilet.
So I'm in her room putting clothes away and 'Hmmm, it goes quiet'. I go on the hunt for Miss Mouse and guess what! I find her in a corner snuggling with Mommacat, giving her kisses and petting her. Awwww.. so sweet!

Other things that warm my heart...

Today would have been my grandmothers 73rd birthday.
Today is Sophie's birthday and she just gave birth to a big baby boy named Keyan! Good work and congrats!

And last but not least.. Fireworks tonight!

One more thing...look at that ticker fly...300+! Thanks you guys and gals!

Cruisin' for a cause

I realise I should have posted this along time ago but here goes!

Today (August 27th) is Cruisin` for a cause day.
Head over to A&W and buy a teen burger!

$1 of every purchase goes to help end MS!

Thanks all!

Busy day

Yesterday was a spur of the moment kind of day!
I woke up feeling pretty good and Grace was still sleeping. Any parent knows this is the prime opportunity to jump in the shower quickly! So I did.

There I was at 8AM, showered, dressed and still waiting for Grace to get up. Hmmmmm what to do? LAUNDRY...what else! It's the story of my life!

At noon I decided to see if my office was busy and went down for a visit. It was not too hot out yesterday but still...the walking, the bus and train rides, stairs and ramps, pushing a stroller... Not to mention packing the stroller and Grace and myself! This seems easy but during a relapse it doesn't take much to wear me out! I was tired before I left the house!

On the C-train I was getting close to passing out. I was so happy to make it to the office and SIT DOWN! It was great to see the few I seen and it was great to have Mark come and get me at the office in the middle of rush hour and road construction. I love you!

As if that wasn't enough excitement we stopped for groceries, rushed home unpacked, had a bite to eat and pack up for the Fireworks.

At 11PM I had enough! We watched Hell's Kitchen, relaxed and went to bed!

I think spur of the moment days are fun but definitely a once in a while kind of thing!

MS Fatigue

What is MS Fatigue?
Well I think it probably is very different for every patient. For me personally it's like being stuck under a load of wet cement... I think! I mean..when is the last time that happened!

I had a great weekend with Mark and Grace! We were a very busy little family running errands, seeing Fireworks, going to visit people, stopping at the park and "just keep driving" because Grace finally fell a sleep!

When Sunday rolled around we woke up had breakfast and WHAM! Fatigue hit. I can barely function. I hate it. Noise aggravates me, lights, moving...just everything. I get very cranky and I don't even realise why until I realise I'm tired. I laid down for a nap and think I slept but I can't really be sure. I never bothered to look at the clock!
When I finally talked myself into getting up I had the worst pains in my head and they are always there when I am tired. I broke down and had my first Alertec pill. They are supposed to give be a bit of energy...I never seen it!

As for the headache well it was like someone was pushing my eyeballs into my head, someone pushing in the soft spot below my skull in the back of my head and like I was carrying a very heavy load of bricks on my shoulders...Fun stuff.

The odd thing about feeling this way is the whole "get as much natural sunlight and vitamin D as possible". We went outside and I started feeling better. It took a few hours but I got better and then was able to go to the Fireworks night 2. Mexico was way better then Canada!

If you are in Calgary, you should come see then with us! There are still 3 night left!

Tomorrow is today

Well tomorrow is now today and I feel better then expected but I did get to sleep until almost 9am!

District 9 was good but you have to see it. It's just one of those movies! Something interesting however is I can no longer run. I say this because I almost passed out at the theater. Seconds before the movie started I knew it was going to be 2 hours before I could go pee and well we've all been there! You get the big popcorn, the big pop and then you patienly wait for the movie to end...I decided to run to the bathroom, pee and run back. I was so dizzy by the time I came back that I could barely go up the stairs to my seat. When I did make it my legs were trembling and shaking for a good 30 minutes and I had to hold on to my seat to not "fall off" from the dizziness. Pretty strange!

The Fireworks were great and I can't wait until Day 2 and 3 and...you get my point! I am happy to endure the walk for the love of Fireworks!

The walk to the fireworks wasn't too bad. It was still hot so we had to take it slow. Like I've said before, the heat really makes me feel wilted. My feet feel like they are swollen and then they get numb. By the time we made our way up the hill Miss Grace decided she was on the move. So I sit to take a rest and then she's up and taking off to be a ham and get attention from who ever will look at her! She died down just before the show started and passed right out for the whole show!

By the time we made it back to the car I was really feelin' it.

There is a symptom called Lhermitte named after a French neurologist. This one is also hard to describe. If I look down (putting my chin to my chest) I get a bolt of electricity that goes down my legs to my feet. It only last 2-5 seconds but it throws me off balance. I really try hard not to move my head when this symptom creeps up on me. If I'm sitting down it actually feels kinda neat but I don't like to feel it because I know what is causing it! With a good nights rest I woke up much better but usually this one stays for a few days.

Today we are off to the park with Grace and to enjoy what's left of summer. Go out and enjoy it too! Soon we'll all be saying "Man, summer just flew by this year. AGAIN!"

Autoject 2

Today I am also feeling generous! You are going to get 2 for the price of 1. And...If I do say so myself...the price for one was quite the "Deal"!

I decided to call Sharedsollutions. They are the company that carried the Autoject 2. This little instrument is something that will make my life easier! All I will need to do is load the pre-loaded syringe into it and press the button. Voila I have been injected!

Like you I am learning so much everyday. This is no different today.

They explained that I couldn't simply request the Autoject 2. I was explained this...

Next week when I meet with Dr. Costello she will fill out my prescription. When she does this she will also fill in a form that will be sent to Sharedsolutions. The next day they will call me and set up a time for their nurse to come for a home visit. This nurse will teach me (Mark too) how to administer an injection. She will also bring the Autoject 2 if I request it. There is also some kind of package that includes a book to keep track of my symptoms.

Wow... the things you learn from one phone call!
So with this...I'll keep you posted!

Thank you

Today I am feeling a little bit tired. I have finally been getting sleep at night thanks to Grace! But today it's MS fatigue. I think I could watch paint dry and enjoy it!

Over the past few weeks I have really enjoyed keeping up with my Blog. I have also been getting lots of feedback. It's encouraging to know that you are reading and enjoying it too!

Now for my award winning "Thank You" speech!

I do owe Greg a big THANK YOU for making the suggestion to start a blog. I really wasn't too excited about it at first but I am seeing how it has helped you understand what I am going through as well as for me to come to terms with MS!

I want to thank Grace again for sleeping the last 3 nights!

And Mark for helping...you are the best!

And I want to thank everyone else for reading, leaving comments and the feedback. If there is something that you would like to read...let me know!

OK.. enough sap!

Today is Friday, I get the afternoon off on Fridays because Grace visits with Grandma and Grandpa. (Thank you!). This means Mark and I get to have a date. We are going to see District 9. Everyone has told us to go! Then we are going to pick up Grace to pack her up again and head to the Fireworks night 1. This is a lot of activity for me in one afternoon and I must admit I am a little bit worried if I'll last. We'll see how I am feeling tomorrow!

My new best friends!

Well you know it's gonna be a hot one when you roll out of bed in the morning, you sit to eat breakfast at 9:30 and the AC kicks on!

So we decided to stay home which was good because I am having a "myelin headache". No such thing exists but when I get these headaches...that's what I call them!

Mark just called me and warned my that tomorrow is going to be even hotter...Time to look for a time share in the North Pole!

Now for my new best friends!
Next week I am to visit the MS clinic and get my Copaxone prescription so I decided to stop by my pharmacy and get some info. Just to have my "ducks in a row" as "They" say.

I never put much thought into getting my prescription but here is what I walked away with...

- 1 shot a day
- 1 prescription is for 30 pre-loaded needles
- I can get an auto-injector
- I will need to buy alcohol swabs
- I will need a bio-hazard bin
- All shots must be kept cold (in the fridge) until time to use them
- They must be at room temperature for injection
- 1 box of 30 needles cost approx $1500.00 (That's for only 1 month)
- Copaxone is the most commonly used MS drug at my local pharmacy

I think that's it but as you can see... I left a little bit overwhelmed!

I am a little bit nervous about giving myself a shot a day but then again I wasn't comfortable with the MS news or the symptoms either. It's the kind of thing that you really do take one day at a time. Let's see what tomorrow brings!

PAIN

Well this morning was a first for me.

I've heard that there is some pain in MS. I've even had a few morning where I hurt a little. But this morning... WOW.

I woke up and kept thinking I was dreaming. I was in so much pain that it had to be a dream. I think it took me about 15 minutes to be able to move a little bit and then a bit longer to tell answer Mark when he said "Do you want something for the pain?".

My fingers hurt along with everything else. I'm still trying to figure out how to explain it.

Let me think about it some and I'll fill you in!

On the positive side, I slept right thought the night!

Other then waking up, today I have lots of energy and so far have had a busy morning playing with Grace and cleaning!

Short but to the point this morning!

Numbness

I have been asked many times to describe what the numbness in my legs feel like.

I have also been told that you hate to ask of feel uncomfortable doing so. My answer to that is "by all means, ask...how else will you know!"

The numbness is my legs and feet is diffrent every day.

Some days - I thought I was going into remision - only a few toes feel numb other days I can be numb all the way up to my rib cage.

The only way I can describe for you to understand is to give examples so here they are!

With my feet the feeling is like walking on a small chunk of snow when you come in the house in winter. You take your boots off get the snow off and take a step. You know you just walked on snow but your sock isn't wet yet. You feel that lump and move your foot. Well for me I have that feeling all the time (for the most part) just before the sock gets wet. My feet are numb, I can feel them, they just feel funny. If I walk on somehting it feels like that snow!

I am more clumbsy then I used to be and this is mostly because my legs are numb and I loose balance a bit.

With my legs it varies again just like any symptoms of MS. A month ago my legs where so numb that I couldn't feel touch. I could walk fine but I did not want to be touched. I could see Grace climbing up my legs or Mark resting his hand on my lap in the car but couldn't feel it. To me this was very disturbing!

I dread winter a little bit too. The few days this summer that it's been colder I've worn pants. They make my legs tingle. The same for shoes. I have trried wearing closed shoes but they make me ache and they feel so strange. I love my flips right now. I need a wall to put them on because my toes aren't feeling where the thong is but otherwise they do not touch me!!!

Being numb like that makes your balance a little bit funny because you think you are walking straight or that you can walk on that towel on the floor and stay upright but since your feet aren't able to sense if they are flat on the ground or not you kind of go off kilter!

So there you have it! Numbness 101!

Contradiction

When diagnosed with MS the first few things you are told before you are seen at the MS clinic are get lots of vitamin D and natural sunlight but stay cool.

Have you ever tried to sit in the sun but make sure you are nice and cold?

If you have and succeeded, please share!

The first thought that comes to mind is finding a lake in Banff, hope the sun is still out when we get out there and sit in it! But then there is the small hypothermia problem!

The reason for staying cool is easy. When the body is cool the swelling stays at a minimum. The swelling causes aggravation and can speed the myelin destruction.

The myelin is essentially the problem in MS.
Take any electrical cord and imagine it is one of your nerves. Like your nerves, it has a protective coat (myelin) which would be the plastic on the outside or the electrical cord. When the plastic is damaged should you touch the actual electrical cord inside you would get a shock. You may also see the appliance falter.

This is what happens for me. When the myelin is attacked it disappears and then the nerves are exposed which then causes "short circuits" in my body. These can happen anywhere and any time. This is what causes lesions on the brain and cervical spine. Once a lesion appears there is a big chance you start having "short circuits"otherwise known as attacks or going into a relapse.

Some people live their whole lives not knowing they have MS and if an autopsy is performed when they die then lesions can be discovered.

All this today to say that it may be cold and raining outside but it just so happens to be perfect for me!

Making the call

Making decisions is never easy and that is something we all know and share.
Weather it's what to make for dinner or life insurance they are never fun and almost never easy.


Making the decision to get married was a 7 of 10.

Having a baby was a no brainer. Daycare is 9 of 10.

Choosing to take meds for MS is a 10 of 10 for me.


Now I have to chose which one I find will be the best fit for me.
Not only does it boil down to taking a medicine but the meds are all given via injections. Daily.
They aren't all like that. I am choosing Copaxone for a simple reason.

At the very beginning of my journey many people told me that MS is a self discovery disease. I was told I will now have to learn to listen to my body, get to know myself better then ever before and to make decision based on my gut instinct.

You may think my reasoning is nuts but here goes it.
A few Monday's ago when I had my complete breakdown I had not yet started research on what meds I wanted to take. My nurse had told me of the 4 choices but I left it at that. I really couldn't have told you the names of them if you asked me!

I laid down that afternoon and had a nap. When I woke up all I could think of was Copaxone. At first I couldn't figure out what the word was or why I was thinking about it. I got a drink of water and then I seen the pamphlet.

Aha...I guess that's the one for me!

It's 8:30 am, Grace has just woken up and I am getting ready to make my call!

Thank you Richard for your comment, great minds think alike!

Comfort and relaxing

Today my question for you is to think about what comforts you. What helps you relax?
Is it curling up on the couch to watch a movie? Is it taking a nice bath? or a hot shower? Maybe it's taking a nap or going for a walk?

This is one of the few things I struggle with as a patient.

I love nothing more then waking up in the morning and having a nice long hot shower.
Imagine one morning you can enjoy something so easy and the next day a cold shower feel like scalding hot water. For me the hotter the water (and I mean lukewarm) the worst I feel. A shower now makes me feel like a wilted flower. No energy. My feet and legs get all tingly and I get dizzy.

I' ve also always loved my sleep. I no longer enjoy that either.
One of the most common symptom of MS is numbness in the legs, arms, hands and feet. I have it in my feet and legs.
My legs and feet are numb when I climb into bed and then they get restless. Restless leads to uncomfortable which then leads to the flopping fish! No rest and no sleep.

A restless night also leads to pain in my legs and feet which isn't fun getting up to! Typically a hot shower makes stiff muscles feel better...Can you see the catch 22?

Rest and sleep is the most important thing a patient. The fatigue attached to MS is very difficult to explain. It's kinda like you are awake but sleeping. Or maybe a picture on a wall. You are there, you hear but can't even respond because it takes too much effort. A very strange feeling!

Add a teething baby who likes to be up from midnight to 3 am and you get a very run down mother!

The next Big Question

Now that you know how I found out about MS I can tell you about it.
I'll do this slowly over time as there is so much to tell and I am also still learning.

This week I was supposed to go the the MS Clinic and learn how to give myself daily shots in many diff rent places however I believe I am going into remission. This is a very good thing!!!
Even if you are symptom free with MS you should still be seeking treatment in whatever form you feel best for you.

I have been seeing a Homeopath (Donna Powers) for many years now. She is also my mother-in-law!
Past treatments for eczema and other things has proven successful for me so we decided to try the MS remedy.
Like most treatments you get worst before you get better and I am very sensitive to treatments.
I took my first dose in June when the doctors confirmed I had MS and then got worst! I stopped the treatment. 2 weeks ago I decided to try again and once again had a very very bad day.

What is a bad day?
Well for me they are all different. This particular day I was extremely fatigued, nauseous, dizzy. I could barely feel my legs all the way up to my rib cage. I couldn't take care of Grace which made it all that much worst for me. I finally broke down and asked for help. I find this very hard on a regular day.
Donna came over and picked up Gracie.
We had a quick chat about how I had just started the remedy again and this could be the cause of the bad day. I decided to stick with it.

We are now 2 weeks later. I am feeling much better. I have had a few new symptoms related to my ON (Optical neuritis) but everything is getting better!

The next big question on my journey...
Do I get the Copaxone or stay with only Homeopathic care?

June 19th 2009 - The verdict

A quick visit to my family doctor early Friday morning revealed what I already knew.

Doctor - "What do you think"
Nat - "It's MS right"
Doctor - "You're so young, I would have never thought this was going to happen to you"
(We are pretty close to our doctor)
Nat - "That fine, what now? What are the chances I gave this to Grace?"

And on it went...

With this said, I am a very lucky person.
You're thinking I'm crazy right... she's told she has MS and this is luck...

Well most people with MS have to wait months or even years to hear the diagnosis.
No diagnosis = no treatment

16 days -that's all it took for me!

June 5th 2009

Have you ever woken up one morning and found that you couldn't see out of one eye?
I have and that is were my MS journey began.

Like most people stress and fatigue is not a good thing to have in your life.

The month of May for me was very busy and stressful. In June my stress levels hit an all time high. When I lost my left eye sight family told me that I should get it looked at. It was a Friday and I kept saying "Oh it's nothing" and "I'll be fine".
Monday rolled along and I was still in darkness so I called the eye doctor who told me to come in the next day. Doctor's not worried...neither am I!

On Tuesday, the doctor said all looked fine and that I needed to see a specialist. I was also explained that I could have simple swelling of the Optical Nerve, early signs of MS or tumours behind the eye. Guess what I'm thinking now!

By the end of the week I had seen the specialist(#2). She asked me all kinds of questions that would have sounded strange to most people. For those who know me very well, you know that by this point I've read up on all I could find about MS. Not the other 2 because for 1, I was pretty much convinced I had MS and 2, I did not want to have tumours. She ended our visit by sating "I am going to send you for am MRI and refer you to another specialist".

I fell apart walking out of that office.
Wait time for an MRI is 3 months to get booked in then could be another 3 months to have it done.

In steps a savior that I really didn't think was necessary at the time.
I private MRI? What is that...
You call, you book, you get it done. That easy!!
Oh.. there is a cost attached to this speedy process and thank you for covering the cost. I owe you.

With in 1 week of seeing doctor #1 I have had an MRI and am off to my family doctor for the verdict.