I just got home from work about twenty minutes ago. And not even ten minutes into walking in the front door, there was an unexpected knock. My friend, who is one of the few whom I've told about the diagnosis, came by to surprise me with a bouquet of sunflowers.
What a wonderful gesture! Faith in humanity restored. Even though I dislike few things more than unexpected visitors (as I am a slob and could not invite her in due to the status of my apartment), that was a great little surprise.
I hope that today, someone in some way, brings you some sunflowers, too.
Love all - :)
Monday, March 31, 2014
Saturday, March 29, 2014
An Open Letter to Unsolicited Advice
I know you're trying to make me feel better. I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay. You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
Friday, March 28, 2014
Sensational
The weirdest part of this latest flare up is the lasting sensations.
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
Margo
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
Margo
Wednesday, March 26, 2014
Making Decisions
I decided to go with Gilenya. I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues. It's the day after my birthday, FAN-TAS-TIC.
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Tuesday, March 25, 2014
Pick Your Poison
Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
Sunday, March 23, 2014
Bad News or Good News?
My name is Margo. I'm 25 years old. And less than one week ago, I was officially diagnosed with Multiple Sclerosis, or MS. I prefer to call it my brain's "self-destruct button."
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
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