Well, not much to report. No change.
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
Showing posts with label what to do. Show all posts
Showing posts with label what to do. Show all posts
Tuesday, January 30, 2018
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
Saturday, February 27, 2016
Two Years Is Not Very Long
Good morning readers,
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Monday, February 22, 2016
ChatMS - 2/22/2016
Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Monday, February 8, 2016
ChatMS 2/8/2016
This week's ChatMS was all about relapse triggers - something I have learned a lot about. Remember to cut/paste the questions to put on your own outreach, and spread the word!
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)
This is an excellent question. Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning. It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them. I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.
Q2 – What have you found that supports your theory?
See above - where I grew up debunks some of the theories about Vitamin D. But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early. I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.
Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?
Stress is the number 1, number 2, and number 3. Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense. The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way. My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned. Right before this, my left side failed. I had to cancel the first trip and, therefore, the first job interview. I lied about the rest. In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities. None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.
Q4 – What have you done to avoid these triggers?
Honestly? In my case, it was moving away from my mother. She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares. When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones. I have yet to meet many people who have failed the treatment like I did. Not a coincidence that my mother was more present in my life that month because of my diagnosis. It is very important that I am aware of her effect on me.
Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)
I am about a 4. I'm pregnant, what can I say? :)
Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are?
I'm about a 2. Heat absolutely effects me. I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me. I have always been heat sensitive, even as a kid. When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs. Very disconcerting and I worry about falling and hurting others.
Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?
HA! Does anyone's neurologist really care that much? My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.
Q8 – What tips would you give to others to try and stay clear of possible triggers?
Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger. I didn't want to get away from my mother as badly as I really needed to. She raises my blood pressure and gives me so much upset. If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much. I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs. It is hard at first to eliminate triggers, but is well worth it. Good luck!
That's a wrap, all! Thanks for reading! - MSloan
Wednesday, January 6, 2016
ChatMS - 1/4/2016
First ChatMS of the year! Please feel free to copy/paste the questions to your own blog, and remember to keep things moving and the conversation going! Happy New Year, everyone!
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
Friday, January 1, 2016
Twlight of Diagnosis
Today I watched a documentary about environmental toxins. Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
Saturday, December 5, 2015
Chat MS - 11/30/2015
This last Chat MS was all about MS research, a topic dear to my little science heart! Please don't hesitate to copy/paste to your own blog to keep the conversation going!
Q1 – Do you keep up to date with latest#MultipleSclerosis news and research articles?
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in#MultipleSclerosis information?
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a#MultipleSclerosis cure in the next 10 years?
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Q1 – Do you keep up to date with latest
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Thursday, November 26, 2015
Chat MS - 11/23/2015
This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Monday, November 9, 2015
Chat MS - 11/09/2015
This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
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, March 10, 2015
Gilenya Lookout -
Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC. We'll see what comes of this!
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
Saturday, May 17, 2014
Results of Art Therapy, 5/18/14
This is the effort I put forth this evening since my last post. Nothing compared to my lion, but he'll have to do. Meet my "Shere."
Love all,
Sloan
Love all,
Sloan
MS - Instructions Not Included
When I started to not feel 'right' back in late 2009/early 2010, I had a simple thought run through my head every day that things felt off:
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
Thursday, April 17, 2014
The "Pull-Away" Game
Remember how I was struggling with whether or not I should tell people about my diagnosis? I'm glad I didn't spread the word like wildfire or make a big deal about it publicly. The reason? The one place I really had no choice to, my job, has been a great little petri dish for how people actually respond in this situation.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
Saturday, March 29, 2014
An Open Letter to Unsolicited Advice
I know you're trying to make me feel better. I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay. You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
Tuesday, March 25, 2014
Pick Your Poison
Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
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