I don't want to make my mother suffer. That isn't what I want.
But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage," "dlalkl oifd them murdsere3rklesdg."
I AM DIRECTLY COPY/PASTING HERE. My mother is a master typist. This person... needs help!!
I can't get her help if she won't seek it herself. I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself. Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:
"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life. and I mean there is NOTHING TOO LOW for you TO DO."
These messages are NOT being instigated by anything at all. I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said. My mother is the only one who's never seen an ultrasound of my baby. She doesn't know my doppler came in, because she wouldn't answer even if I would call. But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father. Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.
My father is not a murderer. I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold. It has only gotten worse.
What... what do I do?
MSloan
Sunday, October 25, 2015
Saturday, October 24, 2015
New Hope
No, not Star Wars. MY new hope!
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
Thursday, October 22, 2015
MS, Real Life, Real Support, Real Fear
Did I say I was done for the night? I lied. I have another thing on my mind that is really grinding me.
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
And it goes around and around and around -
Well, I have an MRI scheduled for Saturday morning, bright and early.
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
Wednesday, October 21, 2015
T Minus...
I'm giving it until Friday to see if things improve. T
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
Tuesday, October 20, 2015
Relapse?
Hey all. Today has been an interesting day.
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
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 :)
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