ChatMS this week was all about cognitive issues. I'm a few days late, but I'm still trying to get the word out there!
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory,
infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you
had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Wednesday, March 30, 2016
Saturday, March 26, 2016
Finally.... A Plan!
I finally got through to my neurologist!
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
Monday, March 21, 2016
ChatMS 3/21/2016
Hey all!
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
Saturday, March 19, 2016
The Power of ... Empowerment
My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related. While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
Wednesday, March 16, 2016
MSminds Chat - 3/16/2016
I found another chat on Twitter today - this one is called MSminds!
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Monday, March 14, 2016
ChatMS, 3/14/2016
Alright, peeps! Time for another installment of post-hours ChatMS!
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
Sunday, March 13, 2016
Optic Neuritis - The Saga Continues
Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut. I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
Thursday, March 10, 2016
ChatMS - 3/7/2016
Good evening, all!
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since#ChatMS has launched. Can you believe it or what?
Woo, go #ChatMS!
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve#ChatMS
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to#ChatMS?
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future#ChatMS sessions so you can gain more insights?
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! Keep the conversation going! :)
MSloan
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since
Woo, go #ChatMS!
Q2: How long have you been participating in #ChatMS?
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
Q3: How did you hear about #ChatMS and what made you join?
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
Q4: Do you remember what our first (or your first) #ChatMS was about?
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
Q5: What does our weekly chat about #MultipleSclerosis mean to you?
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! Keep the conversation going! :)
MSloan
Friday, March 4, 2016
Looking to the future ...
I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
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