Since this week is Multiple Sclerosis Awareness Week I wanted to share some stories with anyone in cyberspace who is searching to give you an idea of what this disease is about. You can read some of my previous posts on the topic too if you want!

• Starting Back on Tysabri
• Breast Feeding, Cytoxan, Infertility?
• Copaxone < Tysabri
• Starting Copaxone
• Multiple Sclerosis Relapse
• I’m Not Dumb.. I Have MS

Since I have started back on Tysabri I have been going to the gym to try and tone up this post baby body.  I was quickly made aware of my limitations all over again and it can be quite depressing.  Imagine this:

You are working out like a mad woman throughout your pregnancy and eventually taper off in the home stretch.  Working out like a mad woman consisted of 45 minutes of brisk walking on the treadmill in addition to strength training. This is fantastic because you feel fabulous!  No nerve pain, no symptoms and you feel like a normal human being again.  You stop working out at the end of your pregnancy because you are really pregnant but channel that energy into yard work.  Now you are a lawn mowing and weed whacking fool!  Life is good!

Fast forward to 6 months after baby:

I am so happy about my current weight loss.  I don’t have the baby weight and I am doing a fabulous job losing the extra weight I started with!  Life is good right?  It would look that way but looks can be deceiving.  I was 30 pounds overweight before the baby was born.  There is a reason and that would be: Pills

I was on Cymbalta and Neurontin for my leg pain.  This pain was intense and would have me in tears because it would just not go away. Nothing helped except for high doses of these medicines.  I wish I could remember how much of each I was taking but I was taking more than one of each multiple times a day.  It was expensive, a pain in the butt and the weight gain was huge.  BUT it worked.  The pain was minimal but going to the gym religiously did nothing to help me lose weight.

After the baby it was like ‘I saw the light‘.  I clearly wasn’t moving around much because of my relapse but when I did start back to the gym it crept back into my life whether I liked it or not.  I do not stretch or work out my lower body, outside of the bike during my cardio. The act of walking triggers the pain but using a recumbent bike is tolerable.

Not stretching is terrible and the Doctor thinks it is a bad idea but I don’t care. I will not go back on those pills!  I have settled for a constant dull pain in my leg day in and day out because I have a better body image, call me vain if you want but I am female.  Some days are worse than others but I just have to suck it up and hope tomorrow is better.  When will there be a day we don’t have to suck it up?

Well yesterday was my 51st Tysabri infusion and my first one back since I stopped when I got pregnant.  I couldn’t believe I had 51 infusions but it does make since because I was on it for just under 4 years when I stopped.

Tysabri is probably the best drug out there for relapsing remitting MS.  You only have to go once a month for a 2 hour infusion which I used to just sleep while I was there.  The side effects are minimal with the worst for me is a really bad headache and perhaps a little one the next day too.  It gives you your life back and I have heard people go from wheel chairs to walking but really you just feel normal.

But there are always risks associated with any miracle drug.  For Tysabri you have a 1 in 1000 chance of developing a rare brain disease called progressive multifocal leukoencephalopathy, PML.  Tysabri was actually pulled off of the market once because of PML so now that it is back we have to sign a waiver every time we are infused and we have to see the doctor before each infusion.  The rules are pretty strict.  Now they do know a little more about what patients are more likely to get PML and I happen to me one of those.  Lucky me right?!  They recently conducted a study to test for the JCV antibody and if you have the antibody your odds of getting PML are higher, like 1 in 500 higher.

Tysabri also suppresses you immune system and I forgot to get my flu shot yesterday! Tysabri is a ton of money too at $7500 each month!  We used to get infused every 28 days but the insurances will only pay for one a month starting at the beginning of the year.  That is total BS to me because they are not doctors they are insurance people.

Even with all of the risks I can tell you first hand that the pros outweigh all of the cons.  This was the first drug I was on at 19 because I wanted to be on the drug that would allow me to keep up with the people my age.  It sure did work too!  You take for granted things that you can do when they are taken away from you.  I mean it is only 1 in 500 that anything really bad could happen so I have to be apart of the 499 is all!  :)

After my infusion I got a headache once I got home but I was able to tough it out so that I could play with the baby and be Mommy.  Now today is a different story because my breasts are ready to explode it feels like!  I haven’t nursed in almost 30 hours and even though I had weaned down to once a day they still aren’t happy.  That is going to be a post coming up on my experience weaning.

I really hope that if someone stumbles across this post who is surfing the web about Tysabri takes my advice and gets on it.  The first time I started this drug I started to slowly feel better at 3 months.  Don’t waste your time or money with those injectables… BIGGEST WASTE OF MY LIFE.  Next time I deliver my baby I am going to try and negotiate a pulse steroid treatment so I can nurse with a few pump and dump days instead of dealing with something as useless as Copaxone.

I also informed my doctor that the lactaction consultant at Genysys hospital told me to nurse on this drug…. details to come in my weaning post.

Well this week I have been swamped because I have spent two days down in Farmington Hills at the neurologist for this damn disease.  I received two more days of steroid infusions and saw the doctor both days.  I have been very overwhelmed lately and expressed some of my ramblings on this topic in a previous post.

It is finally official and I have gotten my deadline on how much longer I get to breast feed.  I am scheduled for my first Tysabri infusion since I stopped on the 23rd of this month which is going to make for a very uncomfortable Thanksgiving!  Even though I am scheduled I still have to go get my antibodies drawn to make sure I haven’t made antibodies to Tysabri and can still take it.  If not the next drug the doctor talked about isn’t even an option in my opinion.

Since this relapse started in August the doctor mentioned that if Tysabri doesn’t work I could always try out Cytoxan.  Then this week he informed me that one of the side effects of Cytoxan is INFERTILITY!  I clearly freaked out on him and said there is no way in hell that I would even consider that drug.  To which he replied you need to take care of yourself blah blah blah.  I will not risk having only one child.

Cytoxan is a form of chemotherapy that they use to help suppress the immune system for Multiple Sclerosis patients.  You can imagine what the ‘normal’ side effects of chemo would be so it would not even be the drug of choice for me even if it didn’t cause infertility.  Who wants to go through that really?  It is very hard to stay positive about a drug that is going to potentially rock your world in such a hard way.

And I have thought about looking into what it would cost for us to freeze some of my eggs and go the IVF route but that is just too depressing to think about and I will hold off on that just in case I get bad news.  I have an idea that it would be pretty pricey but having another child is worth the cost.  With IVF alone there are no guarantees so why depress myself any further?

So I really hope that my antibodies come back negative so I can get my Tysabri on the 23rd because my options if I can’t take it are dismal.  I could try another injection treatment like Avonex but if Copaxone didn’t do squat for me what would make me think that Avonex would? I can’t tell you what a waste of the past month has been for me.  This Copaxone drug was such a waste of money, time and pain.  The only days I felt good were a few days after the steroids every two weeks and that only lasted for a week usually.  I wasted $80 on two months of Copaxone injections and I donated 29 shots to some other patient because I wasn’t going to let it go to waste.

I feel so bad for the future children I hope to have because they are only going to get to nurse for a month tops I am sure.  I was reading a great article the other day about what gives breast feeding Moms guilt and I would say that this qualifies.  But you had better believe that as soon as I have the next baby I will be on all lactation boosting things right after I have it and I will be connected to my pump so I can create an oversupply to extend the minimal time I get to feed breast milk and hopefully get some stocked in the freezer.

So for now it is a big waiting game until I start my treatments which is just another overwhelming factor because I have to go 21 days with nothing to make me feel better!  So you can believe by the time that treatment comes I am going to be a walking wreck so Michael is going to have to step up to the plate for sure!

It has been just about a month since I have posted an update on my progress and after this past weekend I think it is time.  To sum it all up I am just about ready to throw in the towel.

I am beyond frustrated with the lack of progress of the biweekly steroids with the daily Copaxone injections.  There has been zero progress and things are pretty bad the weekend before I go for my steroid treatment.  Due to the lack of improvement I am only hoping to make it to the end of the year with the current medication path and breast feeding.

Apparently the ‘safer’ drug isn’t the best drug if you want results.

Let me just tell you about my trip to Walmart on Friday because it was as close as I have ever been to my breaking point.  I went to Walmart on Friday to get the groceries for my 30 meals project and some Del Monte peaches for a new variation of lactation cookies.  Well I obviously wasn’t meant to complete my shopping trip because halfway through my legs started to give out from under me and my right leg started dragging when I was walking.  I am sure I was a sight to the other shoppers because I had the baby with me.

The worst part wasn’t just that I was having the hardest time standing up and walking but it was also bad because at the end of my trip Little Mike started to fuss because he was hungry.  So while I was attempting to stay standing up I was also trying to make his bottle and feed him the bottle in the checkout.  But on top of that I was putting my bags into my cart, attempting to stand while feeding him his bottle.

Once the checkout was finished he still wasn’t done with his bottle so I had to continue to stand and feed him his bottle.  You might be thinking ‘why didn’t you sit down and feed him his bottle?’  Well I didn’t want to lift his car seat off the cart and risk not be able to lift it back on the cart while in public.

After his bottle got eaten a little bit more I pushed the cart to my car to load the groceries in the back.  Thank goodness I have an SUV because I was able to sit on the back of my car, left hand still giving him his bottle and my right hand tossing my bags into the back of the car.  I was able to lift him into the car and wobble over to the cart corral and back to the driver’s side of my car.

Now for the downfall of having an SUV: I have to lift my right leg to get in the car!  What a drag (no pun intended).  Once I got into the car I called Michael in tears because I was so frustrated with the ordeal I had just gone through.  But we still had to go to the nursing home to see his Grand parents and have sick old ladies touch the baby’s face… ugh.  Let me tell you that was the last thing in the world I wanted to do Friday night.

One of the symptoms I absolutely hate that is getting worse is how weak my legs are getting, especially in the shower.  I have just about given up on showers and will start taking baths I guess.  I don’t want to though because the women in my family tend to get UTIs or yeast infections when they take baths.  Some days are worse than others but it usually always happens in the shower.  In fact, I broke the towel bar in the shower because I was holding onto it.

Medication Options:

• Copaxone- daily injections, takes 6 months to work but can breast feed
• Tysabri- monthly infusion, takes 2-3 months to work, more risks, no breast feeding and hopefully I haven’t made antibodies to it or it is out of the picture
• Pregnancy- Believe it or not this is the one Michael leans towards.  He really wants another baby and close to Little Mike , oh boy.  I just don’t know.

Cherish your little problems because it can always be worse and be thankful for everyday you wake up and get to have another day to live.  You complain a whole lot less when you go through something because you don’t want to waste your good days complaining.  I would gladly let someone walk in my shoes ( or hobble ) just to let them see what it was like if I could.  

I was a slacker last week and didn’t announce that it was Multiple Sclerosis awareness week.  As I laid in bed last night I was just thinking about how different life is 4+ years after my diagnosis.  So I thought I would make up for the lack of promotion last week and give you an idea of how just a single symptom throws your life of track significantly.

Lets rewind to Sophomore year of high school- age 15/16.

I have always been an over achiever and HAD TO be apart of every organization in school.  But it went further than just being apart of every organization because I then wanted to be a leader in that organization because I hated not making a difference.  I was at the top of my class and there was no excuse to not get A grades.  Sure my parents had a lot to do with that but I had the inner drive to get those grades and hated anything else.

Enter first symptom here: loss of feeling in my feet.  So if you didn’t know already I live in Michigan and Winters here suck pretty bad.  But to compensate for the lack of feeling in my feet I wore flip flops all year ’round.  hmmm… I am sure my parents thought it was just a weird teenager thing.

So lets fast forward slightly to Senior year of high school- age 16/17

I started slipping cognitively and my grades started to show it.  I thought that I was just taking too many hard classes or that I shouldn’t be taking pre-calculus online.  Maybe the fact that I was in and out of the Doctor’s office every other week had something to do with it?  But then I remember overhearing someone in the office say that I almost didn’t graduate because I had missed so much school due to appointments.  Something was wrong but no one knew what it was and that is more frustrating than just getting a diagnosis.  Sure enough I still graduated with a 3.85 and 5th in my class.

Moving to Freshman year of college- age 18

I got into a prestigious engineering school with the advice of my Mother and I was ready to start this new chapter of my life.  I was excited because I was going to spend 10 weeks at school and 10 weeks at a real job that they give you and so on!   But my grades were TERRIBLE and it didn’t matter what subject it was.  It was one of the most frustrating things ever.  I would study and go to class and nothing really was sinking in.  Sure I partied like any normal college Freshman but I could not figure out why I had to drop classes because my grades were just atrocious.

I got hired to be an industrial engineer co-op at UPS in Illinois.  HOW COOL!  I was working at the largest UPS hub in the country and the opportunities with them were perfect.  All the students they took in, they hired after school was over.  Life was good.  Something was off .. but I chalked that up to a big life change and I started to accept that maybe I couldn’t be the best at everything because clearly I wasn’t compared to the other co-op.

I go back to school for my second term of classes and yet again suck.  So I started thinking maybe this was just the worst idea ever to pursue this degree.  It sure was an expensive one to be sucking at!  I was paying $40,000 a year to fail and/or drop my classes.  Umm… ouch!

So that Summer I got to go back out to Illinois and work again but this time I was in so much pain and nobody knew why still.  So I picked up a part time job to keep my mind busy so I would be able to ignore it.  I started delivering pizzas for Pizza Hut in addition to my UPS job.  I was probably working 60-70 hours a week at this point.  But I still couldn’t help doing research online during those nights where I couldn’t sleep because my body hurt so incredibly bad.  I started to notice more and more symptoms creep up on me and eventually I cut my work term short because I needed to go to the Doctor and figure this out.

Fast forward to after diagnosis- rough age 20

I try taking a few classes at a local community college.  I figured that all I was doing was taking a few classes and living at home with my Mother that I should be fine because they figured everything out.  Sure enough every time I tried to study I would fall asleep or would stare blankly at the pages for hours.  Still frustrated I just gave up on those classes.  Trying to take these classes was adding to my overall debt and I wasn’t getting a thing from it.

Fast forward to last Fall- age 23

I take a class at my new college… and ace it!  OK maybe it was a fluke because it was just a simple class but it got me back in the groove of the whole school thing.  So I take a hard class in January and an additional so-so level of difficulty class.  I aced my hard class and I am still in my other class but I am holding an A grade in that one as well.  And I am starting two more classes tomorrow.  I am hopeful that the stress of the third trimester and the house won’t distract from the schooling too much but only time will tell.

It feels fantastic to know that all of those years and all of that money I practically sent down the drain wasn’t because I was incompetent, it was because I wasn’t in control of my MS.  I am forever grateful that I was sent to Ohio for my diagnosis which is another post all in itself.  I am forever grateful to modern medicine and particularly- Tysabri.

If you look up Tysabri you are going to see oodles of negative press.  It is a pretty intense drug but if you take anything from this post- take away that it gave me my life back.  It has a risk of a rare brain disease called PML.  I am even one of the people who are more likely to contract PML because I carry the marker compared to others.  I believe the rate is 1 in 1000 could contract PML and if you have this marker your odds are 50% higher bringing you to something like 1 in 500.  But Michael and I both know that quality of life is by far greater than the ‘what ifs’.