Wow.
The year has gone by so fast. I know time does that without you realizing it, and I'm not sure why things have come so quickly for me this year.
I'd like to think it's because I've been busy, and I suppose, looking back at my calendar (I keep three, because my memory is fairly-well shot nowadays), I see that I have indeed been very busy. I'll do a quick run-down, not only for year's end, but for my own posterity so I can have a record somewhere. That's what this blog was supposed to be when I first started it, and the daily journaling thing just hasn't worked out for me. Maybe if I put access to this blog on my tablet, it would, but I don't want to do that. My tablet is for things other than blogging. Besides, the little keyboard display on it is really annoying. You have to click to another screen entirely to get to a bunch of punctuation, and I don't like that at all. I use that keyboard thing as little as possible.
Anyway! I'm going to put a cut here, because this is going to get long, and you might not have time for that. So click for more!
Sunday, December 7, 2014
Friday, April 18, 2014
Spin On
It's been seven months to the day since my last blog post. I'm still here. Just...busy. As I said in my previous post (all those months ago), there are things besides blogging which I devote what energy I have to. It's not that I don't want to blog, or that I have nothing to say. It's just that this little corner of the Internet isn't very high on my priority list compared to other things. I've often thought about things I'd like to put here - thoughts and feelings and the like, but again...when there's time, there's no energy, and when there's energy, there's no time, so...yeah. This blog gets neglected. If I have any regular readers, I apologize to you for the long absences.
Energy is a big, big thing for me. A friend pointed out this article to me about the Spoon Theory, and we've started to use the phrase "I don't have any spoons left" in our house. It's been helpful. Things like "be sure and save a spoon so we can ______" have become a regular part of conversations. The article is worth a read, even though it's not directly about MS. The principle is the same.
There's another thing, too. I figured I would experience it sooner or later, but it really crept up on me and came as something of a shock when the same friend pointed out to me that what I was dealing with was textbook clinical depression. I was really surprised. Not because I had any delusions of "oh, that won't happen to me," but because I thought since I knew what to expect with my condition, I'd recognize it if it started to affect me and be able to stay ahead of it. Realizing/recognizing/accepting there's a problem is the first step toward recovery, right? Apparently that only works if you know something is there. I didn't even see this coming. I knew something was going on - it's not like me to want to do absolutely nothing but watch trash TV. I stopped eating, slept only when I couldn't keep my eyes open, didn't care about anything beyond caring for my pets. Feeding them, letting the dog out and cleaning the litter boxes were pretty much the highlights of my days there for awhile, because I may neglect myself with not eating or bathing (I know, ew, but hey...energy remember?), but unless I'm completely unable to move, I will not neglect my animals. I'll die first.
I talked to a few people who suffer from clinical depression and other mental illnesses who deal with what I was feeling on a day-to-day basis. They gave me some suggestions for dealing with things, and I feel myself normalizing. More than once my doctor has suggested an antidepressant medication, and I've refused, and will continue to refuse. It's not that I don't believe in them - I know they help many people and are useful tools - but I don't believe they're right for me. I've been on them before for other reasons, and I don't like the way they make me feel. Besides, I take enough pills as it is. As long as I know what it is I'm dealing with, I know how to fight it.
Yeah, it's hard, and yeah, I catch myself slipping, but for me it's all about getting around that little inner voice that puts up barriers and lies about everything. For me, also, it's about "can't" vs. "won't." Can I eat, or won't I? Which is it? If it's "can't," I tell the little voice to shut the hell up and get something to eat, even if it's just a piece of cheese or a slice of bread. If it's "won't," that's different. I'll get something later or ask my husband to bring me something home/make something. Can I not take a shower, or do I just not want to? If I can't, fine. I'll do it later. If I just don't want to, I tell myself to shut the hell up and get my stinky ass in the shower. Am I really too tired to _____, or am I just being a whiny little bitch and using my condition as an excuse not to do something? That's really what it's all about for me. With that and persistence, I'm slowly climbing out of the hole this depression shit has buried me in.
I'm very lucky to have the supportive and understanding friends and family I do. I realize that. I can't express the gratitude I have for the people in my life who help and support, but even they can't help when reality hits me square in the face. There are times - more often now than they used to be - when the reality of my condition is all too apparent.
I'm going to go ahead and put a Whiny Little Bitch Disclaimer here. Things are about to get really heavy right now, so WARNING: DRAMA AHEAD. Stop here if you don't want to read my woe. For those who don't mind, read on.
Energy is a big, big thing for me. A friend pointed out this article to me about the Spoon Theory, and we've started to use the phrase "I don't have any spoons left" in our house. It's been helpful. Things like "be sure and save a spoon so we can ______" have become a regular part of conversations. The article is worth a read, even though it's not directly about MS. The principle is the same.
There's another thing, too. I figured I would experience it sooner or later, but it really crept up on me and came as something of a shock when the same friend pointed out to me that what I was dealing with was textbook clinical depression. I was really surprised. Not because I had any delusions of "oh, that won't happen to me," but because I thought since I knew what to expect with my condition, I'd recognize it if it started to affect me and be able to stay ahead of it. Realizing/recognizing/accepting there's a problem is the first step toward recovery, right? Apparently that only works if you know something is there. I didn't even see this coming. I knew something was going on - it's not like me to want to do absolutely nothing but watch trash TV. I stopped eating, slept only when I couldn't keep my eyes open, didn't care about anything beyond caring for my pets. Feeding them, letting the dog out and cleaning the litter boxes were pretty much the highlights of my days there for awhile, because I may neglect myself with not eating or bathing (I know, ew, but hey...energy remember?), but unless I'm completely unable to move, I will not neglect my animals. I'll die first.
I talked to a few people who suffer from clinical depression and other mental illnesses who deal with what I was feeling on a day-to-day basis. They gave me some suggestions for dealing with things, and I feel myself normalizing. More than once my doctor has suggested an antidepressant medication, and I've refused, and will continue to refuse. It's not that I don't believe in them - I know they help many people and are useful tools - but I don't believe they're right for me. I've been on them before for other reasons, and I don't like the way they make me feel. Besides, I take enough pills as it is. As long as I know what it is I'm dealing with, I know how to fight it.
Yeah, it's hard, and yeah, I catch myself slipping, but for me it's all about getting around that little inner voice that puts up barriers and lies about everything. For me, also, it's about "can't" vs. "won't." Can I eat, or won't I? Which is it? If it's "can't," I tell the little voice to shut the hell up and get something to eat, even if it's just a piece of cheese or a slice of bread. If it's "won't," that's different. I'll get something later or ask my husband to bring me something home/make something. Can I not take a shower, or do I just not want to? If I can't, fine. I'll do it later. If I just don't want to, I tell myself to shut the hell up and get my stinky ass in the shower. Am I really too tired to _____, or am I just being a whiny little bitch and using my condition as an excuse not to do something? That's really what it's all about for me. With that and persistence, I'm slowly climbing out of the hole this depression shit has buried me in.
I'm very lucky to have the supportive and understanding friends and family I do. I realize that. I can't express the gratitude I have for the people in my life who help and support, but even they can't help when reality hits me square in the face. There are times - more often now than they used to be - when the reality of my condition is all too apparent.
I'm going to go ahead and put a Whiny Little Bitch Disclaimer here. Things are about to get really heavy right now, so WARNING: DRAMA AHEAD. Stop here if you don't want to read my woe. For those who don't mind, read on.
Wednesday, September 18, 2013
Results and Other Things
It's been a little over a month since I last posted. You'll have to forgive me for that. Blogging isn't all that high on my priority list. I've mentioned before that I have a limited amount of energy, and things other than writing a post take precedence when it comes to rationing it.
Still, I should update/note a few things. One of the primary purposes of this blog was to document stuff (I'm supposed to keep a journal - we all see how good I am about it), so let's get to documenting.
Today ends my 9th week of Tecfidera. Tomorrow September 19th is the start of my 10th week of treatment. There's been some issues with the pharmacy in getting my medication (I won't detail the fiasco, but it had to do with two mail-order pharmacies merging and neither company knowing what was going on, blah blah blah, long story, suffice to say I got my medication with one dose remaining before I ran out. For those who haven't read the previous posts, this was a terrifying prospect, as I really didn't want to have to stop taking this medication and restart it again. The first few weeks were a nightmare.) but that's been sorted now, and hopefully no more things will get screwed up.
I did get my MRI results. This was a depressing day for me, as it showed one new lesion. It's small, and my neurologist doesn't believe it's responsible for any of my symptoms because of its location, but still. I took the news pretty hard, because for me it's like failing a test or something. I got a bad grade, so to speak. Granted, it's not as bad as it could have been (and it's so not my fault, because it's not like there's anything I could have done about it), but still. It's not reasonable or rational, I know, but it was still kind of a blow. My last two MRIs have been stable, so I was kind of hoping for the same result this time.
But, given that, it wasn't really anything I didn't already know. I mean, I'd been having symptoms over the past year and I knew my condition was worsening (that's what "degenerative" means - this illness is going to get worse), but still. Even knowing all that didn't make the news any easier to hear. I admit to having a minor meltdown in which I sat on my back deck in the moonlight (and it was a gorgeous night) with a pack of illicit cigarettes (I don't smoke - never have, really, but my Dad did, and he's been gone a long time, so it was kind of a comfort thing). I just sat there, with lit cigarette after lit cigarette (I had a friend buy me a pack. He looked at me funny but didn't question me.), enjoying the cool summer's night and communing with the spirit of my Dad. He was always my go-to when things upset me, and I was more than a little upset. My husband wasn't home when I got the news (and wouldn't be until late), and I just needed something to take the edge off that wasn't a little white pill.
It worked. I had my little moment to process and cope and that was the end of it. Husband came home and we talked and commiserated and I took a shower (we both hate the smell of cigarette smoke) and carried on.
Because that's what I do.
Speaking of carrying on, as this post says, I have carried on with my Tecfidera. I haven't had any more bad side effects (knock wood) since that last night. I've learned to take my medication and how to keep things at a minimum. I've been able to cut WAY back on how much I need to eat, and that makes me happy. I'm hoping to get back to my local therapy pool next week, but we'll have to see.
I have to say, now that the major side effects of the treatment are over, I feel a hell of a lot better. I have more energy, I'm sleeping less (2-4 hour intervals instead of 5-8), I don't get as fatigued. There are lots of pluses. My balance is better.
The right side of my neck is numb, though. It has been for awhile, and I just chalk it up to my illness doing its thing. It's getting slowly better (diminishing in size - it was all the way from the base of the skull down my neck to my shoulder and arm. Now it's just a little area, so things are getting better). It's noticeable, but random parts of my body go numb off and on on a regular basis, so I'm not too worried. It happens.
My diet is shot to hell with this new medication. I'm getting back on it. I don't even want to know how much I weigh. I feel huge, but my pants still fit, so I don't think I've put on that much weight. I'll step on the scale tomorrow and see what's what. My vitamins too are all fucked up. I'm getting back to taking those again, but I keep missing them. I use this app on my iPad called Pillboxie ($0.99 - worth every penny) that's extremely helpful, but it only helps if you actually take the pills when the alarm sounds. And I kind of don't. So it's not the app's fault. It's totally me.
Sorry I don't have anything encouraging or inspirational to share with you today. I did have a link to an awesome chick who is climbing Mt. Kilimanjaro for the second time to raise $50,000 for the MS Society of Canada, but the website is fucked up, so just take my word for it. Her goal was to raise a million dollars over something like 5 years, and she should be reaching that goal soon.
With all these people fundraising and all the research going on, I'm inclined to believe we'll cure this shit in my lifetime. This January I'll have been officially living with MS for nine years. Ten, really, if you count the year I spent being diagnosed/having weird symptoms. My mother thinks I've been living with it a lot longer, just undiagnosed, but she's my mother, so...yeah.
That is one thing I'll say, people with MS. It's easy to blame Everything You Feel on your illness, but don't do that. It's the first thing we think about when something new happens - "oh, it's just my MS." It might not be. Pay attention to things and discuss them with your doctor(s). By the same token, MS isn't responsible for everything. Particularly irritable? Maybe you're just in a bad mood. Crying? Well, are you really upset about something? Why?
Just because you have MS doesn't give you a free pass to be a whiny-assed jerk. Don't let your illness be who you are.
Be who you are - a person WITH an illness.
How's that for hope and inspiration?
Still, I should update/note a few things. One of the primary purposes of this blog was to document stuff (I'm supposed to keep a journal - we all see how good I am about it), so let's get to documenting.
Today ends my 9th week of Tecfidera. Tomorrow September 19th is the start of my 10th week of treatment. There's been some issues with the pharmacy in getting my medication (I won't detail the fiasco, but it had to do with two mail-order pharmacies merging and neither company knowing what was going on, blah blah blah, long story, suffice to say I got my medication with one dose remaining before I ran out. For those who haven't read the previous posts, this was a terrifying prospect, as I really didn't want to have to stop taking this medication and restart it again. The first few weeks were a nightmare.) but that's been sorted now, and hopefully no more things will get screwed up.
I did get my MRI results. This was a depressing day for me, as it showed one new lesion. It's small, and my neurologist doesn't believe it's responsible for any of my symptoms because of its location, but still. I took the news pretty hard, because for me it's like failing a test or something. I got a bad grade, so to speak. Granted, it's not as bad as it could have been (and it's so not my fault, because it's not like there's anything I could have done about it), but still. It's not reasonable or rational, I know, but it was still kind of a blow. My last two MRIs have been stable, so I was kind of hoping for the same result this time.
But, given that, it wasn't really anything I didn't already know. I mean, I'd been having symptoms over the past year and I knew my condition was worsening (that's what "degenerative" means - this illness is going to get worse), but still. Even knowing all that didn't make the news any easier to hear. I admit to having a minor meltdown in which I sat on my back deck in the moonlight (and it was a gorgeous night) with a pack of illicit cigarettes (I don't smoke - never have, really, but my Dad did, and he's been gone a long time, so it was kind of a comfort thing). I just sat there, with lit cigarette after lit cigarette (I had a friend buy me a pack. He looked at me funny but didn't question me.), enjoying the cool summer's night and communing with the spirit of my Dad. He was always my go-to when things upset me, and I was more than a little upset. My husband wasn't home when I got the news (and wouldn't be until late), and I just needed something to take the edge off that wasn't a little white pill.
It worked. I had my little moment to process and cope and that was the end of it. Husband came home and we talked and commiserated and I took a shower (we both hate the smell of cigarette smoke) and carried on.
Because that's what I do.
Speaking of carrying on, as this post says, I have carried on with my Tecfidera. I haven't had any more bad side effects (knock wood) since that last night. I've learned to take my medication and how to keep things at a minimum. I've been able to cut WAY back on how much I need to eat, and that makes me happy. I'm hoping to get back to my local therapy pool next week, but we'll have to see.
I have to say, now that the major side effects of the treatment are over, I feel a hell of a lot better. I have more energy, I'm sleeping less (2-4 hour intervals instead of 5-8), I don't get as fatigued. There are lots of pluses. My balance is better.
The right side of my neck is numb, though. It has been for awhile, and I just chalk it up to my illness doing its thing. It's getting slowly better (diminishing in size - it was all the way from the base of the skull down my neck to my shoulder and arm. Now it's just a little area, so things are getting better). It's noticeable, but random parts of my body go numb off and on on a regular basis, so I'm not too worried. It happens.
My diet is shot to hell with this new medication. I'm getting back on it. I don't even want to know how much I weigh. I feel huge, but my pants still fit, so I don't think I've put on that much weight. I'll step on the scale tomorrow and see what's what. My vitamins too are all fucked up. I'm getting back to taking those again, but I keep missing them. I use this app on my iPad called Pillboxie ($0.99 - worth every penny) that's extremely helpful, but it only helps if you actually take the pills when the alarm sounds. And I kind of don't. So it's not the app's fault. It's totally me.
Sorry I don't have anything encouraging or inspirational to share with you today. I did have a link to an awesome chick who is climbing Mt. Kilimanjaro for the second time to raise $50,000 for the MS Society of Canada, but the website is fucked up, so just take my word for it. Her goal was to raise a million dollars over something like 5 years, and she should be reaching that goal soon.
With all these people fundraising and all the research going on, I'm inclined to believe we'll cure this shit in my lifetime. This January I'll have been officially living with MS for nine years. Ten, really, if you count the year I spent being diagnosed/having weird symptoms. My mother thinks I've been living with it a lot longer, just undiagnosed, but she's my mother, so...yeah.
That is one thing I'll say, people with MS. It's easy to blame Everything You Feel on your illness, but don't do that. It's the first thing we think about when something new happens - "oh, it's just my MS." It might not be. Pay attention to things and discuss them with your doctor(s). By the same token, MS isn't responsible for everything. Particularly irritable? Maybe you're just in a bad mood. Crying? Well, are you really upset about something? Why?
Just because you have MS doesn't give you a free pass to be a whiny-assed jerk. Don't let your illness be who you are.
Be who you are - a person WITH an illness.
How's that for hope and inspiration?
Sunday, August 11, 2013
A Month Of Misery
So this past month has been a little miserable. I started taking Tecfidera about a month ago and the first week was okay. The second was okay, too. Some annoyance and discomfort, but nothing too bad.
I was starting to lose my nervousness about the new drug. The side effects and warnings were frightening. I'm sensitive to medications and easily influenced biologically by them, so I expected this medication to hit me hard. When it didn't, I was pleasantly surprised.
I was lulled into a false sense of security.
Week three hit me like a freight train. Fortunately it was just the "most common" side effects - gastrointestinal pain, cramping, bloating, flushing, stomach pain, nausea...dear God.
Three days I was in bed, curled up in the fetal position, praying for death. One time I even started crying, it hurt so badly. The acid reflux was horrendous. I chugged liquid antacid and crunched the tablets like mad (though never going beyond the recommended dosage, because that's not helpful). I'd feel better, get up, then repeat all over again.
Three nights ago was the worst. About 2pm my stomach started hurting, then I ran to the bathroom, then all hell broke loose. I was so, so sick. Pain, flushing, more pain, stomach on fire, abdomen cramping and bloating.... FIFTEEN HOURS this went on. I couldn't even eat anything to help my stomach. I just took antacid. About 11pm, I managed a little bread, then a little after that a container of yogurt. I needed something to replace everything that had gone through me. I was in the bathroom every 90 minutes with diarrhea.
Oh. My. God. That was the very worst. As I breathed through the pain, I told my husband that if this is how this medication was going to be, I didn't think I could continue on it. I'd agreed to try it for six weeks (as the side effects are supposed to lessen or disappear entirely after that time), and I was determined to make it, but I didn't think I would continue after this.
Then I found this forum. It had a whole thread dedicated to people on this drug and loads of people offered suggestions and tips and tricks that helped them cope with the horrific side effects of this drug.
Wow. Just fuckin' WOW. Night and day difference. I can't tell you how much difference. Within just ONE day of following some of the suggestions given in this thread (you'll see I commented on it), it was 100% difference for the better. I've followed the advice in it for two days now and haven't had anything like what I was experiencing previously. There's only been a slight bit of flushing, a tiny bit of gas/stomach pain, and I've completely ditched the liquid antacid.
Uh-may-zing. I can't even tell you.
The hard thing for me is eating on time. It's a balance, taking this med here and eating this much there and so on, but honestly? I'll do it if it means never having another 15 hour bout of pain and suffering. That was miserable. If I can avoid that by tamping down the yogurt, I'll do it.
Eating is hard for me as I've mentioned in previous posts, but I'm managing. Breakfast is hardest, but as that's when I need to take my first dose, that gets eaten. And for me, this medication needs to be taken with a meal. I don't just mean half a sandwich and a glass of milk. Oh, no. I mean a WHOLE sandwich, a glass of milk, a container of yogurt, and some ice cream or a pudding cup or something. Protein, carbs, fat. Fruits and veggies.
The upside is, I haven't put on any weight from all this extra eating. (Personally I think it's because this medication ensures that it goes through me quickly, so there's not much time for those calories to get stored.)
I do have more energy. I don't get as fatigued as I have been. Honestly, I didn't know how bad the Copaxone was making me feel until I stopped taking it in preparation to start Tecfidera, but man...night and day difference.
I just had an MRI yesterday. Hopefully I haven't developed any new lesions, and this new MRI will be the new baseline for comparison on Tecfidera. I was on Copaxone for six years. I've been on Tecfidera for 4 weeks today. We'll see next year when I go for another MRI how well I've done. It's supposed to keep relapses at bay really well, so we'll see throughout the year how I feel as well. Right now, I'm hopeful.
I've taken my medicine for the night and am ready to go to bed. Sleeping has been tough due to side effects, but the last couple nights have been blissful, and I've been catching up on what sleep I've missed lately.
I've been off my vitamins for a long time. Since about May. I haven't resumed for various reasons, but if I have another day without major side effects of Tecfidera, I think I'll start them up again on Monday. I really need to. I could use the nutrition. For as much as I'm eating (and I'm eating healthily - not fast food or anything), I'm missing out on a few vitamins I need, like the vitamin D I'm supposed to be taking.
Speaking of eating, there are a few things I can no longer eat. Red sauce is one of them (too acidic). Grease is another (BACON! Noooooo! Not my bacon!). No more deep fried foods for me (I learned this with some shrimp I had the other day). No spicy foods or things that cause gas (like beans and peas).
I'm living on dairy for the most part. Yogurt, cream cheese, cheddar, havarti, tapioca.... All are nice on my tummy, and that's important. Ice cream is a staple, but not much. My doctor did suggest eating ice cream, so I'm taking him at his word.
Besides, who doesn't want their doctor's blessing to eat ice cream?
I was starting to lose my nervousness about the new drug. The side effects and warnings were frightening. I'm sensitive to medications and easily influenced biologically by them, so I expected this medication to hit me hard. When it didn't, I was pleasantly surprised.
I was lulled into a false sense of security.
Week three hit me like a freight train. Fortunately it was just the "most common" side effects - gastrointestinal pain, cramping, bloating, flushing, stomach pain, nausea...dear God.
Three days I was in bed, curled up in the fetal position, praying for death. One time I even started crying, it hurt so badly. The acid reflux was horrendous. I chugged liquid antacid and crunched the tablets like mad (though never going beyond the recommended dosage, because that's not helpful). I'd feel better, get up, then repeat all over again.
Three nights ago was the worst. About 2pm my stomach started hurting, then I ran to the bathroom, then all hell broke loose. I was so, so sick. Pain, flushing, more pain, stomach on fire, abdomen cramping and bloating.... FIFTEEN HOURS this went on. I couldn't even eat anything to help my stomach. I just took antacid. About 11pm, I managed a little bread, then a little after that a container of yogurt. I needed something to replace everything that had gone through me. I was in the bathroom every 90 minutes with diarrhea.
Oh. My. God. That was the very worst. As I breathed through the pain, I told my husband that if this is how this medication was going to be, I didn't think I could continue on it. I'd agreed to try it for six weeks (as the side effects are supposed to lessen or disappear entirely after that time), and I was determined to make it, but I didn't think I would continue after this.
Then I found this forum. It had a whole thread dedicated to people on this drug and loads of people offered suggestions and tips and tricks that helped them cope with the horrific side effects of this drug.
Wow. Just fuckin' WOW. Night and day difference. I can't tell you how much difference. Within just ONE day of following some of the suggestions given in this thread (you'll see I commented on it), it was 100% difference for the better. I've followed the advice in it for two days now and haven't had anything like what I was experiencing previously. There's only been a slight bit of flushing, a tiny bit of gas/stomach pain, and I've completely ditched the liquid antacid.
Uh-may-zing. I can't even tell you.
The hard thing for me is eating on time. It's a balance, taking this med here and eating this much there and so on, but honestly? I'll do it if it means never having another 15 hour bout of pain and suffering. That was miserable. If I can avoid that by tamping down the yogurt, I'll do it.
Eating is hard for me as I've mentioned in previous posts, but I'm managing. Breakfast is hardest, but as that's when I need to take my first dose, that gets eaten. And for me, this medication needs to be taken with a meal. I don't just mean half a sandwich and a glass of milk. Oh, no. I mean a WHOLE sandwich, a glass of milk, a container of yogurt, and some ice cream or a pudding cup or something. Protein, carbs, fat. Fruits and veggies.
The upside is, I haven't put on any weight from all this extra eating. (Personally I think it's because this medication ensures that it goes through me quickly, so there's not much time for those calories to get stored.)
I do have more energy. I don't get as fatigued as I have been. Honestly, I didn't know how bad the Copaxone was making me feel until I stopped taking it in preparation to start Tecfidera, but man...night and day difference.
I just had an MRI yesterday. Hopefully I haven't developed any new lesions, and this new MRI will be the new baseline for comparison on Tecfidera. I was on Copaxone for six years. I've been on Tecfidera for 4 weeks today. We'll see next year when I go for another MRI how well I've done. It's supposed to keep relapses at bay really well, so we'll see throughout the year how I feel as well. Right now, I'm hopeful.
I've taken my medicine for the night and am ready to go to bed. Sleeping has been tough due to side effects, but the last couple nights have been blissful, and I've been catching up on what sleep I've missed lately.
I've been off my vitamins for a long time. Since about May. I haven't resumed for various reasons, but if I have another day without major side effects of Tecfidera, I think I'll start them up again on Monday. I really need to. I could use the nutrition. For as much as I'm eating (and I'm eating healthily - not fast food or anything), I'm missing out on a few vitamins I need, like the vitamin D I'm supposed to be taking.
Speaking of eating, there are a few things I can no longer eat. Red sauce is one of them (too acidic). Grease is another (BACON! Noooooo! Not my bacon!). No more deep fried foods for me (I learned this with some shrimp I had the other day). No spicy foods or things that cause gas (like beans and peas).
I'm living on dairy for the most part. Yogurt, cream cheese, cheddar, havarti, tapioca.... All are nice on my tummy, and that's important. Ice cream is a staple, but not much. My doctor did suggest eating ice cream, so I'm taking him at his word.
Besides, who doesn't want their doctor's blessing to eat ice cream?
Tuesday, July 23, 2013
Progress Report
It's been a week since I started the new oral disease-modifying drug Tecfidera (formerly BG-12), and so far the side effects have been minimal.
To recap, with this drug you start out with a half dose twice a day for a week, then increase to the full dose. The first fill comes with a "starter dose" bottle labeled "days 1-7," then another bottle labeled "days 8-30."
I started the drug last Thursday, July 11, 2013, and increased to the full (what I call "the big girl") dose on Thursday, July 18.
Just so you know, they're serious when they say "take with food." This doesn't mean just a glass of milk and half a sandwich. This means a FULL STOMACH. Not just "something in it." I learned this one the hard way.
As for those minimal side effects I talked about, there have been some bouts of nausea, abdominal cramping, and other gastrointestinal things the package says the medication can cause. I've learned to keep these down to a dull roar if I eat enough both before and after taking the medication. There has been very minimal flushing (one of the main side effects of concern with this drug), and it's mostly just after taking it and just around my hairline. Basically, my neck feels hot and tingly. This isn't often, but it's noticeable when it happens.
I'm guessing this flushing thing is what's responsible for my "running hot," as I call it. I've always been cold, and now I'm not. I'm so warm now the cats even cuddle with me instead of my husband (he's the warm one, not me!). I'm so warm now that I have no trouble at all falling asleep. My body warms the covers over me so quick I don't have time to be cold. My feet and hands are warm now. I suppose it's actually kind of a benefit for me. Maybe we'll save a little on the winter heating bill this year.
There's also been a little bit of itching (not much) like the package says there might be, but it's not that often. It also says that the side effects of the medication lessen or disappear completely after 4-6 weeks on the drug, so we'll see where I sit then. I haven't even made it to a full week on the Big Girl dose, and so far everything is manageable as long as proper protocol is observed (like eating).
One thing I will note is my lack of fatigue. Oh, I still get tired easily and need to lie down on a somewhat regular schedule, but it's nothing like it was when I was on the Copaxone. I noticed an increase in my energy level soon after I stopped the injectable about 6 weeks before starting Tecfidera, and this new medication hasn't swayed it one way or the other.
I've only had one headache, and while I might just be going through a "good phase" (remission of my relapsing-remitting type of Multiple Sclerosis), I'm hoping it's because I stopped the Copaxone.
My anxiety has dramatically improved as well, with only a few bouts off and on, and not for very long. For those who have never had an anxiety attack, consider yourselves blessed. Words can't adequately describe it, but think back to a time when you were truly terrified by something, or consumed with worry over something (like a loved one in the ER after a bad accident), and multiply that by a hundred. Then add the fact that it doesn't stop. You know it's not reasonable, you know it's not rational. You know what it is. You even know why you're feeling the way you are, but it doesn't help. It doesn't stop. Nothing stops it. Nothing makes sense to it. You simply have to endure. To move through it. To get on with it.
To suffer through it.
Because even though it doesn't feel like it at the time, it does end. Eventually. Sometimes it goes away instantly. Other times it slows to a crawl then stops all together.
The complete bitch about this disease is that there's no control of any kind. None. Over your body or your mind. And there's absolutely nothing you can do about it.
But, there are things you can do to minimize things. Cognitive behavioral therapy is a good start. Yoga. Core training exercises. A healthy diet. A positive attitude. Physical therapy. Puzzles. Things to keep your mind and body sharp.
I'm kind of a hypocrite here, as I'm awful about eating. Most of the time it's just anorexia (loss of appetite, not the eating disorder). I have absolutely no interest in food or in eating. But this medication forces me to eat twice a day minimum or suffer the consequences.
Literally.
So there's that.
Speaking of, it's time now to go take my second dose for the day.
Until next time.
To recap, with this drug you start out with a half dose twice a day for a week, then increase to the full dose. The first fill comes with a "starter dose" bottle labeled "days 1-7," then another bottle labeled "days 8-30."
I started the drug last Thursday, July 11, 2013, and increased to the full (what I call "the big girl") dose on Thursday, July 18.
Just so you know, they're serious when they say "take with food." This doesn't mean just a glass of milk and half a sandwich. This means a FULL STOMACH. Not just "something in it." I learned this one the hard way.
As for those minimal side effects I talked about, there have been some bouts of nausea, abdominal cramping, and other gastrointestinal things the package says the medication can cause. I've learned to keep these down to a dull roar if I eat enough both before and after taking the medication. There has been very minimal flushing (one of the main side effects of concern with this drug), and it's mostly just after taking it and just around my hairline. Basically, my neck feels hot and tingly. This isn't often, but it's noticeable when it happens.
I'm guessing this flushing thing is what's responsible for my "running hot," as I call it. I've always been cold, and now I'm not. I'm so warm now the cats even cuddle with me instead of my husband (he's the warm one, not me!). I'm so warm now that I have no trouble at all falling asleep. My body warms the covers over me so quick I don't have time to be cold. My feet and hands are warm now. I suppose it's actually kind of a benefit for me. Maybe we'll save a little on the winter heating bill this year.
There's also been a little bit of itching (not much) like the package says there might be, but it's not that often. It also says that the side effects of the medication lessen or disappear completely after 4-6 weeks on the drug, so we'll see where I sit then. I haven't even made it to a full week on the Big Girl dose, and so far everything is manageable as long as proper protocol is observed (like eating).
One thing I will note is my lack of fatigue. Oh, I still get tired easily and need to lie down on a somewhat regular schedule, but it's nothing like it was when I was on the Copaxone. I noticed an increase in my energy level soon after I stopped the injectable about 6 weeks before starting Tecfidera, and this new medication hasn't swayed it one way or the other.
I've only had one headache, and while I might just be going through a "good phase" (remission of my relapsing-remitting type of Multiple Sclerosis), I'm hoping it's because I stopped the Copaxone.
My anxiety has dramatically improved as well, with only a few bouts off and on, and not for very long. For those who have never had an anxiety attack, consider yourselves blessed. Words can't adequately describe it, but think back to a time when you were truly terrified by something, or consumed with worry over something (like a loved one in the ER after a bad accident), and multiply that by a hundred. Then add the fact that it doesn't stop. You know it's not reasonable, you know it's not rational. You know what it is. You even know why you're feeling the way you are, but it doesn't help. It doesn't stop. Nothing stops it. Nothing makes sense to it. You simply have to endure. To move through it. To get on with it.
To suffer through it.
Because even though it doesn't feel like it at the time, it does end. Eventually. Sometimes it goes away instantly. Other times it slows to a crawl then stops all together.
The complete bitch about this disease is that there's no control of any kind. None. Over your body or your mind. And there's absolutely nothing you can do about it.
But, there are things you can do to minimize things. Cognitive behavioral therapy is a good start. Yoga. Core training exercises. A healthy diet. A positive attitude. Physical therapy. Puzzles. Things to keep your mind and body sharp.
I'm kind of a hypocrite here, as I'm awful about eating. Most of the time it's just anorexia (loss of appetite, not the eating disorder). I have absolutely no interest in food or in eating. But this medication forces me to eat twice a day minimum or suffer the consequences.
Literally.
So there's that.
Speaking of, it's time now to go take my second dose for the day.
Until next time.
Thursday, July 11, 2013
Moving Along
WARNING: BITCHERY AHEAD! This is a whiny post.
Just a bit slow.
Summer is the hardest time of the year for me. The heat alone is extremely bad for my condition, and while we've been pretty lucky here to remain somewhat temperate, we're looking at purchasing a newer home with air conditioning soon. Maybe next year.
Another thing that summer brings is summer activities. These are extremely hard for me, not only because of the heat, but because of the people and involvement. People go on vacations and so on, which means either they want me to play host or want me to visit, and I've come to the point in my condition where I'm able to do neither of those things.
Most people are fairly well aware of my condition by now and take it into consideration when inviting me to BBQs and other fun summer things, but that doesn't make it any less disheartening. Another thing about summer that's difficult for me is I have to keep the windows open for the air flow (to keep the house from heating up, which as we've already established is very bad for me), and that means I hear every car driving by, every screaming kid (and this neighborhood is full of screamers) out of school, every dog barking, every single noise out there. This is problematic for me because fatigue is a huge part of my condition and I absolutely have to lie down during the day just to function. It's extremely hard on me when I finally get to rest and am awakened by the piercing shriek of a neighbor kid or a barking dog.
Fourth of July was NOT a fun time for me. I've come to refer to the first week of July as "Hell Week," because everyone is setting off illegal fireworks in the days leading up to and following Independence Day. (And I mean illegal ones - as in the ones not allowed in this state that they go to the Reservation to get or across the state border to get and set off.) Someone's out there right now setting off something huge. It's pretty far away, though, so I can't tell if it's a big firework that they've saved from last week (LAST WEEK PEOPLE! KNOCK IT THE FUCK OFF ALREADY!), or if someone's out with a shotgun being a dipshit (it's dark out, so I really don't think they're shooting at targets). We have a lot of rural property out here, so a shotgun wouldn't be unlikely. As I've heard it three times over the last half hour, I'm betting on an M-80 or some other illegal firework. (ETA: Yeah, they're fireworks. *sigh*)
I hate stupid people.
I used to love the Fourth. Now it fills me with dread. It's loud, annoying, terrifies my animals, increases the already-doubled summer population, screws up traffic and idiots set off fireworks for days if not weeks afterward. (Last year I yelled at some neighborhood morons for scaring the hell out of my animals in AUGUST with their stupid fireworks!) But it's over now, and with it the first half of the year. I am all but living for fall, when the temperature drops and the kids go back to school and I can close my windows and everything turns inward again.
I was an introvert before my condition. I'm even more of one now. I'm all but a hermit now, and I like it that way.
As I said, we're considering a move next year, either to another part of the area or another part of the world entirely. We'll see. A lot of it will depend on finances and feasibility, but we definitely foresee a move in the not-too-distant future. I've already been looking at houses online.
On another note, today I started a new treatment. It's called Tecfidera (formerly BG-12). I've been waiting for it for over a year, as my former treatment was an injectable medication I didn't take so well to. Tecfidera is an oral medication that replaces the injection, and has been shown in studies to perform the same function of my injectable a whole lot better, and then some. My neurologist thought Tecfidera would be a good fit for me, and I've taken my first dose today.
I tolerated that first dose well. It's a starter dose that I'll take for a week, then increase to the full dosage. I'll blog any reactions or side effects of note here. I've had my preliminary baseline bloodwork (as this can mess with your white cell count, making you more prone to infections), and have an MRI scheduled for next week to see the current condition of my brain. So far I've only had two lesions of note that I'm aware of, and this medication is supposed keep the progression of my MS in check.
Here's hoping.
I've been reading a lot here and there about MS, and most of the things I've been reading are from people who are in wheelchairs. People who know me send me links and such when they come across them, and while there has been a lot of hopeful things written, most of what I'm seeing is from people whose conditions have deteriorated to the point at which they need a wheelchair.
Fortunately I'm not in this position at the moment. I use a cane and need some help walking sometimes (especially with stairs), and while I can't go very far or very fast, I'm not in a wheelchair yet. Everything I'm reading, though, pretty much says "I was in a wheelchair within 20 years of my diagnosis." Okay, fine, but! I was diagnosed early and, forgive my sexism here, am a woman. Most of those I've been seeing in wheelchairs are men, and men are notorious for not going to the doctor when something is wrong. It's an unfortunate fact that men don't get the treatment the need as early as women do, due to the illness not being caught as early as it is in women. (Sorry, guys...but it's true.)
And that's not to pick on men. MS is also notorious for being hard to diagnose. The early symptoms can all be explained away (I did it, too! The only reason I got diagnosed as early as I did was because the last doctor I had to be prodded into seeing knew the symptoms I was describing as he was familiar with the disease. Before that doctor, one referred me to a psychiatrist for "stress" and basically told me it was all in my head [he was right, after a fashion, I suppose] and another sent me to a sleep clinic where I was diagnosed "narcoleptic." Um...no....) in various ways, and men aren't very vocal about their various issues. It usually isn't until their MS is in the later stages and is more recognizable/troublesome that they finally go to the doctor.
I was lucky in so many ways, and I'm aware of that. But lucky or not, the reality is that, unless a cure or serious treatment is found for this illness, a wheelchair is in my future.
But today is not that day.
Now it's time for my second dose of my new medication. I'll let you all know how that goes.
Just a bit slow.
Summer is the hardest time of the year for me. The heat alone is extremely bad for my condition, and while we've been pretty lucky here to remain somewhat temperate, we're looking at purchasing a newer home with air conditioning soon. Maybe next year.
Another thing that summer brings is summer activities. These are extremely hard for me, not only because of the heat, but because of the people and involvement. People go on vacations and so on, which means either they want me to play host or want me to visit, and I've come to the point in my condition where I'm able to do neither of those things.
Most people are fairly well aware of my condition by now and take it into consideration when inviting me to BBQs and other fun summer things, but that doesn't make it any less disheartening. Another thing about summer that's difficult for me is I have to keep the windows open for the air flow (to keep the house from heating up, which as we've already established is very bad for me), and that means I hear every car driving by, every screaming kid (and this neighborhood is full of screamers) out of school, every dog barking, every single noise out there. This is problematic for me because fatigue is a huge part of my condition and I absolutely have to lie down during the day just to function. It's extremely hard on me when I finally get to rest and am awakened by the piercing shriek of a neighbor kid or a barking dog.
Fourth of July was NOT a fun time for me. I've come to refer to the first week of July as "Hell Week," because everyone is setting off illegal fireworks in the days leading up to and following Independence Day. (And I mean illegal ones - as in the ones not allowed in this state that they go to the Reservation to get or across the state border to get and set off.) Someone's out there right now setting off something huge. It's pretty far away, though, so I can't tell if it's a big firework that they've saved from last week (LAST WEEK PEOPLE! KNOCK IT THE FUCK OFF ALREADY!), or if someone's out with a shotgun being a dipshit (it's dark out, so I really don't think they're shooting at targets). We have a lot of rural property out here, so a shotgun wouldn't be unlikely. As I've heard it three times over the last half hour, I'm betting on an M-80 or some other illegal firework. (ETA: Yeah, they're fireworks. *sigh*)
I hate stupid people.
I used to love the Fourth. Now it fills me with dread. It's loud, annoying, terrifies my animals, increases the already-doubled summer population, screws up traffic and idiots set off fireworks for days if not weeks afterward. (Last year I yelled at some neighborhood morons for scaring the hell out of my animals in AUGUST with their stupid fireworks!) But it's over now, and with it the first half of the year. I am all but living for fall, when the temperature drops and the kids go back to school and I can close my windows and everything turns inward again.
I was an introvert before my condition. I'm even more of one now. I'm all but a hermit now, and I like it that way.
As I said, we're considering a move next year, either to another part of the area or another part of the world entirely. We'll see. A lot of it will depend on finances and feasibility, but we definitely foresee a move in the not-too-distant future. I've already been looking at houses online.
On another note, today I started a new treatment. It's called Tecfidera (formerly BG-12). I've been waiting for it for over a year, as my former treatment was an injectable medication I didn't take so well to. Tecfidera is an oral medication that replaces the injection, and has been shown in studies to perform the same function of my injectable a whole lot better, and then some. My neurologist thought Tecfidera would be a good fit for me, and I've taken my first dose today.
I tolerated that first dose well. It's a starter dose that I'll take for a week, then increase to the full dosage. I'll blog any reactions or side effects of note here. I've had my preliminary baseline bloodwork (as this can mess with your white cell count, making you more prone to infections), and have an MRI scheduled for next week to see the current condition of my brain. So far I've only had two lesions of note that I'm aware of, and this medication is supposed keep the progression of my MS in check.
Here's hoping.
I've been reading a lot here and there about MS, and most of the things I've been reading are from people who are in wheelchairs. People who know me send me links and such when they come across them, and while there has been a lot of hopeful things written, most of what I'm seeing is from people whose conditions have deteriorated to the point at which they need a wheelchair.
Fortunately I'm not in this position at the moment. I use a cane and need some help walking sometimes (especially with stairs), and while I can't go very far or very fast, I'm not in a wheelchair yet. Everything I'm reading, though, pretty much says "I was in a wheelchair within 20 years of my diagnosis." Okay, fine, but! I was diagnosed early and, forgive my sexism here, am a woman. Most of those I've been seeing in wheelchairs are men, and men are notorious for not going to the doctor when something is wrong. It's an unfortunate fact that men don't get the treatment the need as early as women do, due to the illness not being caught as early as it is in women. (Sorry, guys...but it's true.)
And that's not to pick on men. MS is also notorious for being hard to diagnose. The early symptoms can all be explained away (I did it, too! The only reason I got diagnosed as early as I did was because the last doctor I had to be prodded into seeing knew the symptoms I was describing as he was familiar with the disease. Before that doctor, one referred me to a psychiatrist for "stress" and basically told me it was all in my head [he was right, after a fashion, I suppose] and another sent me to a sleep clinic where I was diagnosed "narcoleptic." Um...no....) in various ways, and men aren't very vocal about their various issues. It usually isn't until their MS is in the later stages and is more recognizable/troublesome that they finally go to the doctor.
I was lucky in so many ways, and I'm aware of that. But lucky or not, the reality is that, unless a cure or serious treatment is found for this illness, a wheelchair is in my future.
But today is not that day.
Now it's time for my second dose of my new medication. I'll let you all know how that goes.
Friday, April 19, 2013
Still Here
And still alive.
No, nothing bad happened to me or my family or anything. I've just been busy with life and things more important than blogging about my unfortunate condition have taken my time.
See, that's the thing about this illness. I have to pick and choose what I spend my energy doing, and there are a lot of times when I have to prioritize. Blogging isn't very high on the priority list when I've got to choose things.
As I said, I've been busy. Nothing specific, and nothing vastly life-altering. Just...you know...life.
Sometimes, it's all I can do to cope with that. Sometimes something as simple as washing the dishes or folding a load of laundry does me in for the rest of the day.
In the time it's been since I last blogged, there have been some 8 days, 9 days, 1 days and 5 days. That's the thing about MS - you never know what kind of day it's going to be. You might wake up feeling like complete shit with a migraine and vertigo, but two hours later you feel ready to gear up with the Avengers.
The reverse is also true. You wake up, bright-eyed and bushy-tailed, and just after you shower and dress you're hit with fatigue like a freight train and have to lay down or fall down. There's no consistency with MS. No certainty.
Except one.
And that certainty is - it's going to get worse.
That certainty frightens some into complete shut down.
I'm not saying that's not frightening, and I'm not saying I'm not afraid. I am.
I just don't let that fear stop me from doing what I want. You can't stop. If you stop, you die. So move. And keep moving.
Other people are moving. Google "MS Walk" and you'll see just how many are moving. All over the world, people are moving, and those who can't move are being moved by others.
Things are happening. Things are changing. They WILL find a cure. They will.
We just have to hang on until they do.
Soon now.
I'll try to get back to blogging regularly, but like I said, MS is a disease of uncertainty, so no promises on that.
As for today, I'm going to call it a 3. I've been good on taking my vitamins (I was off for several weeks there in Feb/March) and am trying to eat better. It's hard sometimes to eat properly when you have so little energy, because not only does convenience replace nutrition, neglect often replaces it as well. Sometimes I just don't have the energy to go make myself something to eat, and other times I know I should eat but don't have the appetite to bother. My family is amazing and looks out for me, but they can't do anything about how little I eat when food is made. I feel bad sometimes when a meal is made and all I manage is a few bites before I just can't eat anymore because I'm either not interested in food or am just literally to tired to eat.
I was reading something today about pregnancy (which I'm not and that's officially no longer possible, thank you) and realized that the symptoms of early pregnancy (like the first four weeks) are very similar to living with something like a junior version of MS. There's constant fatigue, anxiety, mood swings, nausea, headaches, backaches, sensitivity to light and smells...it was uncanny reading it.
So to those women who have been pregnant, remember that time. That's what it's kind of like to live with MS, only times 100.
Ironically, it's said that pregnancy is one of the times a MS patient feels their best. I wouldn't know - as I said, I'm officially out of the gene pool. I was diagnosed young and that only added to my decision (among many other private issues) not to have children.
The last time the flu ran through our household and my husband was spending his fifth day in bed with fatigue and headache, he turned to me and said, "Honey, if this is anything like what you feel every day, I'm sorry."
I smiled and said, "Thank you. And yeah, that's kind of what it's like, only imagine having to get up and go about your day as normal feeling like you do."
He said, "I don't know how you do it. You're the strongest person I know."
I said, "Thanks, baby. Put this under your tongue." (He was running a temp of 103....)
No, nothing bad happened to me or my family or anything. I've just been busy with life and things more important than blogging about my unfortunate condition have taken my time.
See, that's the thing about this illness. I have to pick and choose what I spend my energy doing, and there are a lot of times when I have to prioritize. Blogging isn't very high on the priority list when I've got to choose things.
As I said, I've been busy. Nothing specific, and nothing vastly life-altering. Just...you know...life.
Sometimes, it's all I can do to cope with that. Sometimes something as simple as washing the dishes or folding a load of laundry does me in for the rest of the day.
In the time it's been since I last blogged, there have been some 8 days, 9 days, 1 days and 5 days. That's the thing about MS - you never know what kind of day it's going to be. You might wake up feeling like complete shit with a migraine and vertigo, but two hours later you feel ready to gear up with the Avengers.
The reverse is also true. You wake up, bright-eyed and bushy-tailed, and just after you shower and dress you're hit with fatigue like a freight train and have to lay down or fall down. There's no consistency with MS. No certainty.
Except one.
And that certainty is - it's going to get worse.
That certainty frightens some into complete shut down.
I'm not saying that's not frightening, and I'm not saying I'm not afraid. I am.
I just don't let that fear stop me from doing what I want. You can't stop. If you stop, you die. So move. And keep moving.
Other people are moving. Google "MS Walk" and you'll see just how many are moving. All over the world, people are moving, and those who can't move are being moved by others.
Things are happening. Things are changing. They WILL find a cure. They will.
We just have to hang on until they do.
Soon now.
I'll try to get back to blogging regularly, but like I said, MS is a disease of uncertainty, so no promises on that.
As for today, I'm going to call it a 3. I've been good on taking my vitamins (I was off for several weeks there in Feb/March) and am trying to eat better. It's hard sometimes to eat properly when you have so little energy, because not only does convenience replace nutrition, neglect often replaces it as well. Sometimes I just don't have the energy to go make myself something to eat, and other times I know I should eat but don't have the appetite to bother. My family is amazing and looks out for me, but they can't do anything about how little I eat when food is made. I feel bad sometimes when a meal is made and all I manage is a few bites before I just can't eat anymore because I'm either not interested in food or am just literally to tired to eat.
I was reading something today about pregnancy (which I'm not and that's officially no longer possible, thank you) and realized that the symptoms of early pregnancy (like the first four weeks) are very similar to living with something like a junior version of MS. There's constant fatigue, anxiety, mood swings, nausea, headaches, backaches, sensitivity to light and smells...it was uncanny reading it.
So to those women who have been pregnant, remember that time. That's what it's kind of like to live with MS, only times 100.
Ironically, it's said that pregnancy is one of the times a MS patient feels their best. I wouldn't know - as I said, I'm officially out of the gene pool. I was diagnosed young and that only added to my decision (among many other private issues) not to have children.
The last time the flu ran through our household and my husband was spending his fifth day in bed with fatigue and headache, he turned to me and said, "Honey, if this is anything like what you feel every day, I'm sorry."
I smiled and said, "Thank you. And yeah, that's kind of what it's like, only imagine having to get up and go about your day as normal feeling like you do."
He said, "I don't know how you do it. You're the strongest person I know."
I said, "Thanks, baby. Put this under your tongue." (He was running a temp of 103....)
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