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
Showing posts with label twitter. Show all posts
Showing posts with label twitter. Show all posts
Monday, March 14, 2016
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Monday, October 12, 2015
#ChatMS
I just participated in my first Twitter #ChatMS - it was excellent! I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world. It's so great getting to know all of you as we share in this journey together.
I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy? WHY NOT, I SAY!
So the next post will be the progress on Squishy thus far. Love to all! And thank you for participating, you make me brave!
Miss Sloan :)
twitter.com/revelwoman
I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy? WHY NOT, I SAY!
So the next post will be the progress on Squishy thus far. Love to all! And thank you for participating, you make me brave!
Miss Sloan :)
twitter.com/revelwoman
Subscribe to:
Posts (Atom)