It is hard when things start piling up; school, tests, quizzes, osces (don't worry about it), weight, lack of exercise. It almost feels like things are spinning out of control. I am not sure how to attack things that are coming at me. OR what I should even do first. Why didn't anyone ever tell me how to deal with, midterms, quizzes, living without my best friend in the same town.. mixing all of that in with personal life, exercise, healthy lifestyle. Oh and it must've slipped my mind, MS, infusions, injections, rashes, antibiotics. I feel lost. I was talking to someone tonight about their life, first year out of highschool- playing basketball, living away from family and getting nothing worse than A's on their midterms or assignments. I haven't pulled off and A yet in any of my classes, and I'm not doing any of those things. Whats up? I don't know. This is hard, and I feel like no one knows how I really feel.
God, I need you now. I don't know what to do. I am literally drowning, in life and my tears as I write. I am hurting, feeling less of a person for all of this. I'm finding it impossible to "count it all joy". I'm lost, scared, I know You have a purpose, but right now, honestly I don't see it.
Goodnight.
~Just a Girl
Wednesday, October 31, 2012
Tuesday, October 30, 2012
Day 5- AWESOME!
I love injections, rashes, feeling exhausted and MS, said no one EVER!
Awesome day? Well not really, not at all. I woke up this morning jumped in the shower, got out and saw red dots over my side and thought "Are you kidding me? Bugs (and/or) spiders were in my bed eating me all night?" I was a little ticked, then realized that it was too weird to have that many bites from one night and only on the sides of my body. Those thoughts happened over about 2 seconds. Then I called the MS nurse at UBC a little worried about this awesome rash. I sent her some pictures and told her exactly where and what it was.
She eventually got back to me and said it may be a allergic reaction to the drug trail drug. A delayed reaction of sort. OR It could also be a viral rash. So she quickly put my on antibiotics because if this rash was a virus and it got into my bloodstream it just was even more bad news.
So at this point I am exhausted and I don't know how much of this post makes sense.. but I should probably take another Benadryl and a nice hot shower. So adios.
~Just a Girl
Awesome day? Well not really, not at all. I woke up this morning jumped in the shower, got out and saw red dots over my side and thought "Are you kidding me? Bugs (and/or) spiders were in my bed eating me all night?" I was a little ticked, then realized that it was too weird to have that many bites from one night and only on the sides of my body. Those thoughts happened over about 2 seconds. Then I called the MS nurse at UBC a little worried about this awesome rash. I sent her some pictures and told her exactly where and what it was.
She eventually got back to me and said it may be a allergic reaction to the drug trail drug. A delayed reaction of sort. OR It could also be a viral rash. So she quickly put my on antibiotics because if this rash was a virus and it got into my bloodstream it just was even more bad news.
So at this point I am exhausted and I don't know how much of this post makes sense.. but I should probably take another Benadryl and a nice hot shower. So adios.
~Just a Girl
Thursday, October 25, 2012
Day 1- Treatment
Wow, today was a long long day, I had a really crappy sleep, didn't really eat breakfast, fell asleep multiple times, got poked a few times and now waiting for a good supper. So here is how my day went.
0315- Thirsty and got up, super ticked that I couldn't sleep and that I was hot and had a frusteratingly flat pillow
0500- Still not time to get up, but my computer has a light on it that brightens and dims and it was really bugging me.
0640- First alarm goes off and my mom tells me to go shower. No way! I finally got comfortable, but I do know that I have to be at the hospital by 0800; or so I thought.
0720- Finally drag myself out of bed and get in the shower, get dressed, do hair and makeup.
0745- In the car on the way to the hospital.
0800- Get to the hospital and find out that the nurse doesn't come in until at least 0830 or 0900. Oops...
0820- Get started on 1 of 4 tests. Fist one I had to look at a legend of symbols that corresponded to a number 1-9. Then go through a sheet of symbols and match it to the correct number. Not so bad. Next test: Putting 9 pegs into little holes as fast as i could and not dropping them. It was ok, both hands weren't great. Third test: She turns on a Cd that lists off numbers I have to add up the numbers when they are said to me. Bear with me as I try to explain... The cd says 8, 2 I say 6 cd says 5 I say 7. So I just have to give the answers and add up each of the numbers that are said to me. First off I'm terrible at math, and then its timed, and then she marks down how I do...How do you think I did? Yeah not so great. Oh and it gets better! After 1.5mins of that it speeds up to give a number every 2 seconds instead of 4. Trust me, it wasn't fun. The penultimate test (second to last test) was an eye test and then I had to walk 25 feet as fast as I could. I don't know why. But I did it.
0900- The nurse finally comes and she gives me a bit of a rundown of how the day is going to play out. Tests, blood work, neurological exams, surveys, ECG's, infusion, ECG, teaching on injections, paperwork and then I was able to leave.
0910- First neurologist comes and gives me a neurological exam. Checks my cranial nerves ask about symptoms and checks overall strength. Second Dr. comes in and checks physical health, makes sure my liver and gall bladder, lungs and heart are all ok.
0945- Start a few surveys, about my symptoms, fatigue, how it interacts and affects my life. How tired I am, how it affects my everyday activities. And a suicide/depression survey- I am fine by the way. :)
1015- Blood work was done, they took like 8 tubes of blood. Oh and another thing my veins are really really small, no one really likes them and they are hard to find.
1025-1100- I have no idea what happened, maybe I was getting introduced to the "Infusion Day Care Clinic." I really don't remember.
1130-1440 I was told that I was going to start the Ocrelizumab but first they gave me some Tylenol, and Benadryl, for any potential side affects. They also gave me a steroid for that as well. That took about 20 minutes to infuse. Then they started my Ocrelizumab at 1130. They checked my blood pressure every 15 minutes for about 3.5 hours. I kind of fell asleep inbetween the moments where it felt like the life was being squeezed out of my arm. But it wasn't too bad, I met a older guy who was really nice. It was sweet to talk to someone else who had MS and we could talk about symptoms. He helped me describe one of the symptoms when the numbness goes into my arm. He said it was like putting on a wet shirt. That totally helped and was exactly how it felt. My mom and friend were also there throughout the day which was really nice. I won't be seeing my friend for a very long time and she will be missed greatly.
1500- Got another ECG. Then the MS nurse showed me about my other drug, Rebif. This drug as I said before would be injected 3 times a week. She showed me how to do it, and how to keep track of when and where I inject it. It was not as bad as I thought it was going to be but I still don't really like injecting myself with needles.
1545- The guy I met in during the infusion offered to give me a ride to the airport. Which I was very thankful for because I really really dislike taxis. Especially because they make me car sick, they drive really jerky, and take detours to make more money. Not all that much fun. So I made it to the airport in one piece and my stomach stayed where it is supposed to.
Now... my plane is delayed, I'm exhausted, have class at 0800 (which I may skip for the first hour), my knees, back, legs hurt and I'm almost starting to get grumpy again.. just like the day started off. Kidding, I'm not actually grumpy and a pain all the time. I have actually had a pretty good attitude today and lately. Just really tired.
But anyways I am signing off for tonight.
~Just a Girl
0315- Thirsty and got up, super ticked that I couldn't sleep and that I was hot and had a frusteratingly flat pillow
0500- Still not time to get up, but my computer has a light on it that brightens and dims and it was really bugging me.
0640- First alarm goes off and my mom tells me to go shower. No way! I finally got comfortable, but I do know that I have to be at the hospital by 0800; or so I thought.
0720- Finally drag myself out of bed and get in the shower, get dressed, do hair and makeup.
0745- In the car on the way to the hospital.
0800- Get to the hospital and find out that the nurse doesn't come in until at least 0830 or 0900. Oops...
0820- Get started on 1 of 4 tests. Fist one I had to look at a legend of symbols that corresponded to a number 1-9. Then go through a sheet of symbols and match it to the correct number. Not so bad. Next test: Putting 9 pegs into little holes as fast as i could and not dropping them. It was ok, both hands weren't great. Third test: She turns on a Cd that lists off numbers I have to add up the numbers when they are said to me. Bear with me as I try to explain... The cd says 8, 2 I say 6 cd says 5 I say 7. So I just have to give the answers and add up each of the numbers that are said to me. First off I'm terrible at math, and then its timed, and then she marks down how I do...How do you think I did? Yeah not so great. Oh and it gets better! After 1.5mins of that it speeds up to give a number every 2 seconds instead of 4. Trust me, it wasn't fun. The penultimate test (second to last test) was an eye test and then I had to walk 25 feet as fast as I could. I don't know why. But I did it.
0900- The nurse finally comes and she gives me a bit of a rundown of how the day is going to play out. Tests, blood work, neurological exams, surveys, ECG's, infusion, ECG, teaching on injections, paperwork and then I was able to leave.
0910- First neurologist comes and gives me a neurological exam. Checks my cranial nerves ask about symptoms and checks overall strength. Second Dr. comes in and checks physical health, makes sure my liver and gall bladder, lungs and heart are all ok.
0945- Start a few surveys, about my symptoms, fatigue, how it interacts and affects my life. How tired I am, how it affects my everyday activities. And a suicide/depression survey- I am fine by the way. :)
1015- Blood work was done, they took like 8 tubes of blood. Oh and another thing my veins are really really small, no one really likes them and they are hard to find.
1025-1100- I have no idea what happened, maybe I was getting introduced to the "Infusion Day Care Clinic." I really don't remember.
1130-1440 I was told that I was going to start the Ocrelizumab but first they gave me some Tylenol, and Benadryl, for any potential side affects. They also gave me a steroid for that as well. That took about 20 minutes to infuse. Then they started my Ocrelizumab at 1130. They checked my blood pressure every 15 minutes for about 3.5 hours. I kind of fell asleep inbetween the moments where it felt like the life was being squeezed out of my arm. But it wasn't too bad, I met a older guy who was really nice. It was sweet to talk to someone else who had MS and we could talk about symptoms. He helped me describe one of the symptoms when the numbness goes into my arm. He said it was like putting on a wet shirt. That totally helped and was exactly how it felt. My mom and friend were also there throughout the day which was really nice. I won't be seeing my friend for a very long time and she will be missed greatly.
1500- Got another ECG. Then the MS nurse showed me about my other drug, Rebif. This drug as I said before would be injected 3 times a week. She showed me how to do it, and how to keep track of when and where I inject it. It was not as bad as I thought it was going to be but I still don't really like injecting myself with needles.
1545- The guy I met in during the infusion offered to give me a ride to the airport. Which I was very thankful for because I really really dislike taxis. Especially because they make me car sick, they drive really jerky, and take detours to make more money. Not all that much fun. So I made it to the airport in one piece and my stomach stayed where it is supposed to.
Now... my plane is delayed, I'm exhausted, have class at 0800 (which I may skip for the first hour), my knees, back, legs hurt and I'm almost starting to get grumpy again.. just like the day started off. Kidding, I'm not actually grumpy and a pain all the time. I have actually had a pretty good attitude today and lately. Just really tired.
But anyways I am signing off for tonight.
~Just a Girl
Day 0- Almost Treatment Day
Up up and away.
This is Phase II figures and also a few years ago. But seriously at 200mg brian lesions were 89% lower? (If I am understanding this fact right) that is amazing. Especially since my neurologist said all of the other drugs available on the market would give me less than 50% change of working (lessening symptoms). There is no cure for MS.
Right now I am sitting in the airport waiting for my plane to leave to Vancouver. Tomorrow I start my first day of treatment. So I believe that this is a good time to fill you all in with what I am going to be apart of for the next two years.
So when I went down for my first appointment with the neurologist at UBC he presented me with (hand cramps, another symptom) the option of being apart of a drug trial. This trial includes two drugs. One which is on the market for MS patients and it is a good drug called Rebif. The other drug is Ocrelizumab. Ocrelizumab is being studied all throughout the world and in many different countries. This drug is in Phase III of the trial. It has been around for about 10 years and been very very successful in treating relapse remitting MS. So this is great for me!
So Ocrelizumab is drug that is administered thorough IV approximately every 6 months. Rebif, the other drug that is apart of the study is self administered 3 times a week thought a self injector.. yippee, not! I am not impressed at all about that. I am not all that thrilled about needles to begin with let alone giving them to myself.
As a part of the trial I will be getting one of the two drugs and a placebo drug (Placebo:A substance that has no therapeutic effect, used as a control in testing new drugs.) So I will either get Ocrelizumab and Placebo Rebif OR Placebo Ocrelizumab and Rebif. This means a few things;
1. I do not know which drug I am on, actually no one does except for a random 3rd party that no one really knows about.
2. I have to "take" both drugs; injections, 3 times a week and also IV every 3 months.
This treatment will last for two years; starting tomorrow. I will have my first day tomorrow and get the first dose, which is half of the Ocrelizumab dose and Rebif. Then I will continue to give myself injections and 15 days from now come back to Vancouver and get the second half of Ocrelizumab. Then three months later and so on for the next two years. Throughout these years there will be constant checkups, frequent trips to Vancouver for the IV drug, many many many injections, lots or blood and urine tests, and hopefully LESS SYMPTOMS!
A few months ago I was thinking to myself how amazing it would be to not have any numbness in my hand for one whole day. One day. To be able to feel textures, and to feel normal again. It will be wonderful to wake up one morning and not think about my hand. I do get glimpses of that when I drive to school in the morning on these cold fall days. When my hand is cool/cold I don't notice that it is numb, it does feel normal. Someone a few months ago asked my why I drove mostly with my left hand these days, and I think subconsciously I don't like the added stress of holding on to the steering wheel with my right hand so it is dominantly my left hand driving. However when it is cold out I seem to drive mostly with my right hand. Strange? Yeah kind of.
Here is an encouraging fact about Ocrelizumab: In a phase II, 24 week, clinical trial, 218 people were split into groups receiving one of two doses of ocrelizumab (600mg and 2000mg), interferon beta-1a (Avonex) or placebo. After 24 weeks, the number of active lesions as measured by MRI scans was 89% lower in the low dose group and 96% lower in the high dose group compared with the placebo group.
This is Phase II figures and also a few years ago. But seriously at 200mg brian lesions were 89% lower? (If I am understanding this fact right) that is amazing. Especially since my neurologist said all of the other drugs available on the market would give me less than 50% change of working (lessening symptoms). There is no cure for MS.
Monday, October 22, 2012
And Sometimes Life Never Stops...
Oh dear goodness these past 2 weeks have been nuts, 3 midterms....and...well 3 midterms says enough. At this point I can't actually remember why life is so crazy right now. However I do know that I feel like life just doesn't give me a time to breathe.
I have started swimming, almost everyday and surprisingly enough it actually gives me more energy. It is also really nice to catch up with the girls that I go with. They are both so great and gives me sanity to my nut-case life.
So this week is "The Big Week", my first day of treatment. I am flying down to Vancouver on Wednesday night, hopefully stay in a nice place and then all day thursday I have tests and things like that. I will also be able to fill you in more on what this drug trial is all about. Anyways I am feeling like I can't think let alone write a post. So I will fill you in more later this week. Thanks for catching up.
~Just a Girl
I have started swimming, almost everyday and surprisingly enough it actually gives me more energy. It is also really nice to catch up with the girls that I go with. They are both so great and gives me sanity to my nut-case life.
So this week is "The Big Week", my first day of treatment. I am flying down to Vancouver on Wednesday night, hopefully stay in a nice place and then all day thursday I have tests and things like that. I will also be able to fill you in more on what this drug trial is all about. Anyways I am feeling like I can't think let alone write a post. So I will fill you in more later this week. Thanks for catching up.
~Just a Girl
Wednesday, October 10, 2012
Sometimes, life is hard.
You know sometimes when you are just sitting there thinking about how the last few days or even weeks have been pretty good? Well I would have to say that 'things' have been pretty good lately. I had an awesome Thanksgiving. I got to make most of it with a really great friend and eat with her family. The next day I had a great supper prepared by my cousin and then ate with my aunt and uncle and some of their friends. It was great! I even got to take pictures of stars that night too. (I got my two dream shots, check it out here.) I hung out with friends till two in the morning. Man, things were looking great!
That was however until things hit me, again and again and again! My MS, my test marks, my school, my drug trail, my relationship with God, boyfriend, family... oh the list goes on. But sometimes life, to put it bluntly, sucks! Its hard, I don't like it. It makes me want to give up and try harder all in one breath. To be honest I can't help but think, is there where I am supposed to be, where God wants me to be. Is it all really supposed to hurt this much? Why does it hurt? I almost wish I was more angry than hurt. Anger I can throw things, run until I collapse (or in my case because of my MS until I can't see). But hurt, hurt makes me want to fall to the ground and never get up. Hurt wrecks me from the inside out. I dislike this feeling and I don't want it to be here.
However I don't want this to be a place for me to complain and whine about my life so I will continue with hopefully less of that.
One thing that has helped me, especially today and for about the last week was a song I have on a mix CD my sister made and I have in my car. I feel like I drive a lot these days, to school, pool and where ever else I go. The one song that I find my self going back to is #8. The song talks about how God is faithful, never once have we ever walked alone, never once did He leave us on our own. Never Once by Matt Redman. Consistently this song brings me to tears, even now as I write.
Have I mentioned life is hard? Well people it is. It is also hard to understand that God will NEVER leave us on our own. I know I have seen it in my life or families life again and again, but it is so hard to keep that in the front of my mind.
If you are reading this and would be willing to pray for me I would be honored and love it dearly. Here are a few things that you could bring to God:
1. Healing, I desire to be healed from this MS and do know that God has the power to do so.
2. Focus, I need focus in school. When it comes to writing tests, midterms, papers, class. I truly want to do well in my nursing and graduate in 3 years
3. Positive attitude. Keep looking forward and not be discouraged with things in my life.
Thank you muchly for reading and supporting me in the way you do. Wether you know me personally or not. I hope that one day this blog will touch someone else and encourage them.
~Just a Girl
That was however until things hit me, again and again and again! My MS, my test marks, my school, my drug trail, my relationship with God, boyfriend, family... oh the list goes on. But sometimes life, to put it bluntly, sucks! Its hard, I don't like it. It makes me want to give up and try harder all in one breath. To be honest I can't help but think, is there where I am supposed to be, where God wants me to be. Is it all really supposed to hurt this much? Why does it hurt? I almost wish I was more angry than hurt. Anger I can throw things, run until I collapse (or in my case because of my MS until I can't see). But hurt, hurt makes me want to fall to the ground and never get up. Hurt wrecks me from the inside out. I dislike this feeling and I don't want it to be here.
However I don't want this to be a place for me to complain and whine about my life so I will continue with hopefully less of that.
One thing that has helped me, especially today and for about the last week was a song I have on a mix CD my sister made and I have in my car. I feel like I drive a lot these days, to school, pool and where ever else I go. The one song that I find my self going back to is #8. The song talks about how God is faithful, never once have we ever walked alone, never once did He leave us on our own. Never Once by Matt Redman. Consistently this song brings me to tears, even now as I write.
Have I mentioned life is hard? Well people it is. It is also hard to understand that God will NEVER leave us on our own. I know I have seen it in my life or families life again and again, but it is so hard to keep that in the front of my mind.
If you are reading this and would be willing to pray for me I would be honored and love it dearly. Here are a few things that you could bring to God:
1. Healing, I desire to be healed from this MS and do know that God has the power to do so.
2. Focus, I need focus in school. When it comes to writing tests, midterms, papers, class. I truly want to do well in my nursing and graduate in 3 years
3. Positive attitude. Keep looking forward and not be discouraged with things in my life.
Thank you muchly for reading and supporting me in the way you do. Wether you know me personally or not. I hope that one day this blog will touch someone else and encourage them.
~Just a Girl
Subscribe to:
Posts (Atom)