FDA Approved??!

https://www.gene.com/media/press-releases/14657/2017-03-28/fda-approves-genentechs-ocrevus-ocrelizu

I believe it has been approved!!!!!! Still trying to cross check as many places as I can. But I am 99.9% sure that this is happening!!! I guess the FDA workers do not update the website after hours. But for now the MS world can give a huge WOOHOO!!!! Can't wait to call the doc tomorrow to get the process started...stay tuned 😄

Big Day Today...

So it has been a little over 2 years since I last posted something.  I wish there was a way to connect my thoughts to the computer because I have constantly thought about things to write but by the time I get around to actually doing it…well I get caught up in other things.  But a lot has happened since I first started this journey and I really want to share it.  So here it goes…

Well I will get into the changes I have gone thru a little bit later right now I want to talk about the changes that hopefully will be happening in the MS world today.

The MS world is eagerly waiting the approval for a new form of treatment Ocrevus.  This new medicine has been labeled as a “breakthrough” medicine.  According to the studies it has shown to help people with both RRMS and Primary Progressive MS.  So far, as far as I know, there is little if any medicine for people with PPMS.   So the approval for this med is great news for the MS world! Here is a link to an interview with Dr.Tim Coetze.  It is a little scientific but it shows how exciting and encouraging this new is for the future in the MS world.  Here is a link if you would like to read about the 5 Things You Should Know about the New MS Drug Ocrevus.  As with anything you research and read on the web please do your own research and cross references. 

As for me today I am constantly “hatching” the FDA’s webpage waiting and praying that this gets approved.  I must say the last time I refreshed the page I saw “March 28, 2017 – FDA approves new eczema drug Dupixent”.  Don’t get me wrong that is great news…just not the news I have been waiting for.  So for now I will be refreshing the page as often as I can so hopefully I will get a call into the doctor before the end of the day.  Fingers crossed!!!!

Starting MS meds- Step 1

Starting MS meds- Step 1

Starting medicine for multiple sclerosis is not as easy of a process as one may think.  Typically when you go to the doctor and find out that there is something wrong, they pull out their handy dandy tablet computer and scribble type something, and then you drive down the street and pick it up.  Well I found out that this is not the case with prescriptions prescribed for multiple sclerosis.  These meds are not the typical prescriptions that are available from the local pharmacy.  MS meds are “specialty prescriptions” that are only available from the specialty pharmacy. I learned that this process was quite lengthily so I’m going to break it down into the 3 steps. 

Step 1- Figuring out what to take

Step 2- Insurance, Red Tape, Waiting Game

Step 3- Starting the Medicine

So this is how my journey to starting medicine went…

During my follow up visit with my doctor, she told me to look over the different types of medicine that is offered to help manage multiple sclerosis.  Ok personality I thought that was a little strange…Call me old fashioned, but up until now my doctors have always diagnosed what is wrong and then wrote a script.  I never gave a second thought what they were giving me. I guess I figured that the doctor would be the one telling me what I should take.  She did, however,  give me a starting point with 3 different medicines to look up.  My research went something like this:

o  Medicine #1 – Injection…Yep that was all I needed to know about that one. (Remember I have a HUGE fear of needles) That one immediately was crossed off my list. 

o  Medicine #2- Oral Pill… So far so good… It helped to reduce the signs and symptoms of multiple sclerosis and helped stop new lesions on the brain and spine (helped to reduced flare ups).  Yep I liked the sound of that. 

o  Medicine #3- Oral Pill… Again so far so good… It helped reduce the effect of long team disability and help current lesion from getting larger.  I liked the sound of that also. 

I am by no means a doctor, but from what I can understand from my google research one med helped now and the other helped down the road.  How am I supposed to decide? How am I supposed to choose between what is happening now and how mobile I want to be in the future.  Can I just take both?! I obviously knew that was out of the question.  So next I looked at the possible side effects.  Have you ever really looked at the side effects of medicines????  If you have not…don’t start! So after I got a little freaked out that one of them could possibly cause my heart to stop, but that was really only during the first 8 hours after taking the first dose, I decided to look at how they monitor the medicine.  They both required about the same blood work…great.  So after hours of research I am even more confused than I started. 

When I went back to the doctor she told me that she would like to start me on Gilenya, an oral pill.  I had to chuckle because after hours and hours of research and worrying about which medicine I was going to try, that was the one that I wanted to try.  And by try I mean just that try.  The way that the MS meds work varies by every person.  So no one knows IF a medicine WILL work or what possible side effect(s) someone may get until they give it a try. 

Ok I was good and happy with the decision to start Gilenya.  I was fully expecting to leave there and start this magic pill and everything would go back to normal.  This is when my doctor informed me that this was just the first step in starting the medicine.  Our next step was to hope, and pray, that the insurance would approve. 

On to step number 2…

I'm Back :)

So I took a little break from my blog…

I think I needed a break.  I needed a break from MS and time to regain myself.  I am thankful I wrote what I did when I did.  I wanted to be able to look back and remember how this journey began.  And I want to continue sharing my story, the ups and downs, but I want to add more to my story.  Because after all what I have learned over the last almost two years is that there is more to me then multiple sclerosis.  It is just a part of me; I will not be defined by it.  I plan to continue my journey close to where I left off.  I will share my experience with starting MS meds and coming to terms with everything.  I am not going to say that my journey thus far has been and stroll in the park; it has been more of a hike on the path less traveled.  But hey I have never been one to follow the path that everyone else does; so why should I start now?! I hope you will stick with me as I unfold and share more parts of myself and this (as it turns out) wonderful journey that I am on. 

Stay tuned….

Date Night

Every day I have been feeling a little bit stronger and a little less motion sick. So on Friday, my Mom and I decided that it would be a good idea to get out of the house for a little while and go to the store.  I did not realize how exhausted I would become walking through a store.  We were not out too long before I was done; my energy level was beyond low.  I did realize, however, on the way home that I was not the best car traveler yet.  Thankfully Mom was quick to pull over... and thankfully it was a false alarm :)  After we got back home we picked the girls up from school that afternoon.  I am really trying my hardest to have them see me as "normal" as I can be and to get some sort of normalcy back into their lives.

We really went back and forth if we should go to the game and stay the night in St. Louis for our anniversary date.  I know Scott was worried about me and the possibility of me over-doing it and getting tired easy.  My thought was I wanted one night to get away from everything, just one night to not think about the hospital or MS.  I knew that I would still have a constant reminder of my condition, but I just wanted to go out.  I also told Scott that we should stay the night at the hotel; after all we could not have found a parking place closer than the hotel.  

The only thing I was worried about that evening was the car ride over... but I picked up some sea sickness wrist bands and they seemed to help, plus I had my lovely bucket with me.  There were a lot of lane closes going to get to downtown, so Scott thought he knew a better way.  Let's just say the way we went was not a smooth road or from the looks of it the best area.  I was just hoping that we would not have to pull over; it did not look like that nice of a neighborhood for that.  

We got to the hotel right at check in time so I have plenty of time for a little nap before the game.  I was really in need of one after the ride over.  We went back and forth about what we should do about dinner.  Originally I had a plan for a nice dinner before the game, but I was not too sure if we made sense to go out to eat, because my appetite was not quite back yet.  I did not want to order a nice dinner that I would not eat.  So we took a walk in the hotel to see what all was on the buffet that night.  Yep it was just the right types of food for dinner before the game.  Can't beat the deal we have with this hotel room, free parking, buffet dinner, 3 free drinks, and a buffet breakfast!  See it was worth staying at the hotel tonight :)

Scott and I had a nice anniversary dinner buffet at the hotel!  We did have some looks and comments about how he was a St. Louis Rams fan and I was a Green Bay Packer fan.  It is always fun to see people's reactions to a relationship with two different teams.  But now it was time to head to the game!

As I mentioned before I am still have a bit of motion sickness.  This realization came flashing back while we took the escalators up; I think there were three different ones, but who is counting.  I was a little nervous about the travel up and thankfully Scott could read my mind and distracted me from the motion.  After we were off all the escalators I thought I was in the clear. Well that is until we got to our seats.  I love sitting high up so we can see the whole field, but I was having a little different perspective of the field tonight.  Between the lighting and the "spinning" football field it appeared it could be a long night for me.  Thankfully we got to the game early and I was able to settle my disorientation before the real action started.  Since it was a preseason game it was not too crowded or too loud, which I was very thankful for.  Right before the game started our friends joined us.  After some football talk they asked what was new with us.  Scott and I looked at each other and chuckled.  He just replied, "Where should we start?"  After they heard the story, they replied, "Well you look great and I would never have guessed you were sick."

Not the best picture, but this was the first picture I shared after my diagnoses.  We had a great anniversary date and after the game, we did not hit the town like I have originally planned.  We hit the sack instead and I hoped to sleep in the next day.  It was not the fancy night out anniversary that I had in my head, but I could not have asked for a better date night!  

Day After the Hospital

When we left the hospital I was given a script for steroids, a business card for the local multiple sclerosis society and was told to follow up with my doctor.  Yep that was it.  No information on multiple sclerosis...we left only with more and more questions.  After Scott dropped me off at home he went and had my script filled.  However, because I was so sick that evening I thought it was pointless to take something that was just going to come right back up.  So I figured the next morning was a perfect time to start.

I must admit that the day after the hospital was the foggiest for me to remember.  I think I ate a little something for breakfast so I could take my steroids.  Thankfully my Mom was there so she could help get the girls ready for their first day of school and make them breakfast.  We went out to take pictures before they got on the bus. And by we I mean my Mom took all the pictures and I say on the step.  But hey I was at home for their first day I was not still in the hospital.  Mom walked the girls to the bus and I went in for a nap.  That is pretty much what I did that day.  I ate little bits of food.  My tummy was still not quite right, but I knew I needed to eat.  Scott called throughout the day to check on me.   I am so thankful Mom was there.  There was no way I could have taken care of my girls or me by myself yet.  I needed get stronger.

I did do some Google research on multiple sclerosis.  And well basically learned how to spell it.  Hahaha.  I did not do too much research because well I kinda thought if I learned about it then it would be "real".  I was not ready for that.  I could not really even talk about having MS without crying.  I knew this would get easier, but I was not at that point yet.  So if I did not answer any of your calls or respond to your emails around this time I am very sorry.  So instead of doing research I decided it would be better to take a nap and get stronger.

I needed to get stronger, not exactly to take care of myself and my girls, but because I had an anniversary date for Saturday night!  We obviously had this set up long before I was sick.  I had a grand plan...My hubby and I had a hotel reserved downtown St. Louis, go for a nice dinner, go to the Rams/Packer football game, and then hit the town.  You see I am a Green Bay Packer fan and Scott is a Rams fan.  Okay clarification, I like the St. Louis Rams also...except when they play the Packers.  I have to root for my Packers then, after all being a Packer fan is in my blood!

So I have 2 days to get strong for my hot date night.  And as I proved before when I set my mind to something I can make it happen!

Hospital Journey Concludes

It is now Wednesday August 14th, 2013.

I woke up to a wonderful text from my husband that said "Happy Anniversary".  He also sent this picture.

Looks like all our girls slept with their Daddy, even our furry daughter.  And the fact that I only got teary eyed when I got this was a huge plus for the day.  Hopefully today was not going to be the crying my eyes out like yesterday was.  Scott also told me that the girls were needing to come and see me today, basically "my mother hen needed to see me".    Scott was going to go into work in the morning and the girls were going to go to my fabulous neighbors.  We knew that the neurologist would not be stopping by until around lunch time so we knew Scott would be fine going to work he would not be missing anything at the hospital.

I spent the morning with Pat and my Mom was going to come after lunch.  Pretty much the morning was nothing special, just sitting around and waiting to go home.  The nurse did tell me that the more the doctors see me out of bed the better the chances would be for me leaving.  Needless to say, I was walking as much as I could and sitting in the chair rather than the bed whenever I could.  I asked the nurse to ask the neurologist to see if I could be on one of the last stops they make so Scott could get back from work to sit in on the conversation.  So now all we had to do was sit there and wait.  We knew the spinal tap results would not be ready for a couple of days so we were just waiting for the all clear to go home.  After all my girls first day of school was tomorrow!  So basically the word for the day is waiting!

Parts of the day are a little foggy, but I am pretty sure that this is what happened.  If I get anything incorrect, I apologize and I will chalk it up to foggy MS brain and stress.  I cannot remember if my Mom brought the girls or if Pat left to get them which think is what happened.  I do remember that the moment I saw my Mom walk into my room we both burst into tears.  I do not think the nurse knew what to do with both of us crying.  I finally to her not to worry, she was my Mom.  I guess the nurse understood because her just chucked.  You see that is how I am and how my family is.  If one of us gets tears in our eyes and the other one sees it, it is over, we all all in tears.  I was so happy my Mom came.  There is just something comforting about having your Mom by your side when you are sick.

When my girls walked in I almost felt a breath of fresh air.  I was finally going to get the hugs that I have been needing.  And yes I had tears in my eyes.  I was quickly able to dry them up and tell the girls that I was fine and I was hoping to come home soon.  I also showed them the heart monitor wires that were on me and the IV.  I wanted to show them so they would not be scared or afraid to ask me questions.  I think their favorite part was when I took them for a "ride" on the hospital bed or maybe they liked the ice cream the nurse brought them.  They liked how it would go up, down and tilt.  They ended up staying for a good couple of hours.  It was great having them there.  They were the best medicine for me!

Shortly after Scott came back to the hospital a doctor came in.  Thankfully it was not a sea of lab coats like yesterday but it was a nice looking lady.  She introduced herself and said she was specialized with multiple sclerosis.  She went over my MRI and told me that they were convinced that I did in fact have multiple sclerosis.  She also confirmed that we would not know the results form my spinal tap for about 4-6 days.  Then she gave us the best news...I was going home tonight!!!  WooHoo!  Right before she left the head neurologist came in to talk to us.  Both the doctors asked if we had any questions.  Of course we did, but we had no idea where to even start.  The best way to describe what we were feeling was scared and in shock.

We still had some time to kill before we were officially allowed to leave.  I asked if Scott could take me off the floor.  So we got a wheel chair and we left...well we left to go down stairs so Mom could use our parking pass to head back to our house.  I should have known something was not quite right when I was feeling motion sick with Scott pushing my chair, but I chalked it up to his driving.  Hahaha.  After he came back from the parking lot he asked where I wanted him to talk me and I said back to the room, I was very tired.  Plus I did not want them to say we could go home and we were not there!  And sure enough shortly after we were back, they said we could leave!!!  Time to pack my bag and leave!  I proved to myself if you set your mind at something you can make it happen.  My first goal was to be out of there in time to be at home for the first day of school, and it happened!

Well the ride home what not quite as smooth as we would have thought.  I am not going to go into details, sorry about that, but let me just say that I am glad that the sick bags and bucket were still in the car.  It was a VERY rough and long drive home.  Poor Scott got to see me getting sick next to him!  Happy Anniversary honey! He did ask before we crossed the river if we should turn around.  My answer was "No way, keep driving.  I am not going back there!"  When we got home I hugged the kids and said I was not feeling well, got sick a little more and then went to bed.  I think I was asleep by 8.  Not sure about the time but that sounds good.  I lost track how many times Scott checked on me that evening.  I have never been more thankful or felt so lucky to have him!  He truly is my rock.