What a week, man.
Okay, well I am scheduled to start an infusion medication for the Crohn's disease next week; it's called Entyvio. I don't know much about it, other than it won't flare my MS unlike other Crohn's meds like Remicade.
Am I shocked I have Crohn's? Not one bit. But I don't really have Crohn's symptoms, so I have to take their word that the inflammation is consistent. I am hoping that the med will reduce things enough, but I am feeling like the surgeon on Wednesday is going to tell me I need to go under the knife and have a resection. I might need to have surgery in any case just to fix the bladder fistula, which I would probably welcome at this point, with the only exception to that feeling being that I am trying to get started at a new job here very soon and am anxious about the time frame for recovery. On the plus side, this particular location is notorious for taking a long time to "get in the system" (goodness knows it has already taken me a month to finalize everything, though I am expecting my offer this wee), so I am praying that it will take just a little bit longer and work in everyone's favor!!
I also had a meeting with my neurologist this week. I mentioned my struggles with spasticity, which have been particularly bad this last year (remember the foot attack at the Safeway incident?) So, she put me on Gabapentin. I'm slowly tapering that up, but probably won't take a huge amount as I am not really in need of that much of a change to be honest. Though I have not had the "eek I am about to have a spasm" feeling for the last few days since taking it, which is great, because I had three incidents of it in one night less than a week ago!
My neurologist was none too pleased that I was unmedicated for so long. I know that I made that decision for two reasons - 1, I couldn't afford the Gilenya with my Kaiser insurance for some reason, and 2, Steve and I were thinking that we might have a baby again this year. So being unmedicated made sense, as long as nothing bad happened between now and August. Well, that clearly did not happen! So she talked me into getting started with the Copaxone generic, called Glatopa, which is a daily injectable.
OY. I did it tonight, and man, this one hurt. I remember doing the subcutaneous injections with the Acthar years ago, but don't remember anything hurting this bad. I do recall one side of my abdomen hurting more than the other, and I feel like the left side was the better side, but I could be wrong and will need to go back and look. But it's been two hours since my injection and the site is still pretty painful. I am glad I did not get the heart-shattering, painful, "sense of impending doom" that some people get with this, haha, but pain is still no fun.
I will continue to update, and might give a video about doing the injectables one of these days. The best highlight of my weekend was a new baby - - I brought home a 2 month old ball python. I love her so much! Her name is Kaa. I haven't had a snake in years, and I just adore them. 2 year old daughter had a healthy sense of hesitation regarding the snake, but warmed up when we were putting her away - let's hope they grow together to love one another :)
Love to all,
MSloan
Showing posts with label multiple sclerosis. Show all posts
Showing posts with label multiple sclerosis. Show all posts
Sunday, March 4, 2018
Friday, January 19, 2018
Uncomfortable Tests and How To Get Through Them
Good morning to all, and Happy 2018!
Well, no news is good news for the most part. I haven't had too many things to talk about in regards to the MS department since my last post, which should be a good sign. The unfortunate news is that now - something else has gone wrong!
Besides the classic MS symptoms that come and go (my L'hermitte's sign, the cramping toes, the fuzzy brain and fatigue), I have been generally well. That is, until mid-December, when I had terrible stomach cramping. My stomach would bellow and growl so loudly that my coworker could hear them across the office - I was certain I had some kind of obstruction, if it wasn't for the fact that at least my bowels were moving. I have always felt a sneaking suspicion that I had some kind of inflammatory bowel condition (as I read they commonly accompany MS), so I figured it was something that would have to be addressed eventually.
At the same time, my husband thought the mole on my back looked suspicious (I disagreed...it has been there my whole life!) But to placate him, I made an appointment for a general physical. I thought I would still be symptomatic with stomach pain by the time I came in - but it had subsided about four days prior to my appointment. I asked about getting my foot looked at to finally get my bunion removed, got a flu shot, and asked for my birth control and anti-depressant prescriptions to be refilled. All in all, it was a pretty uneventful visit the week before Christmas. She ordered me basic labwork and I went on my merry way.
When I went in the next day for bloodwork, I didn't expect anything to pop up or look funny. I always have slightly (as in, a few points) strange labs for a couple of figures, but nothing that has ever raised a red flag. But this time I noticed that my platelet count (which normally hovers around 400-425, a little high but nothing big) had jumped to 570. Whoa! I felt fine, so I thought maybe it was just leftover from a stomach bug or whatever was bothering me a few weeks before. She also noticed that my cholesterol numbers were all over the place, and my triglycerides were high. Okay, okay, I know I haven't been very good at exercising lately. But could these things be tied together?
I largely ignored the labs, and my doctors told me they wanted to retest in 3 months but weren't terribly concerned. My neurologist was unhappy with my Vitamin D levels (granted, they were very low) so now I had to take more Vit D. Easy enough.
I remembered reading that MS could give you issues with your bladder, and I had a history of UTIs that had no symptoms. So I did an at-home AZO stick test, and found that I had a high level of white blood cells in my urine. "That's odd," I thought, though the nitrate stick was fine, so I couldn't have an active UTI. I told my doctor that I wanted her to order a full urinalysis and I would take it when I got back from my business trip in a week.
Well, here we were on said business trip - in Las Vegas. Which means I was not at home. My 20-month-old daughter was roaming the streets with my husband while I was in classes, and I noticed on the second day we were there that I had to go to the bathroom after every class.
UH OH, says every woman I know.
I drank water and drank water some more. I paid close attention to every sensation - dammit, I feel like I have to pee again. Oh no, now it's starting to hurt. I was hating myself for even thinking about having a UTI, because now I was certain I had cursed myself, and I hadn't had one in years! I moaned to my husband and we spent a lot of time walking back and forth to the Walgreens across the street. They should have given me a job, I was in there so much! I loaded up on Pyridium (the 'numbing' stuff that turns your pee bright orange) and cranberry juice, Cystex, and AZO strips. By 10 PM, I was passing small red blood clots. And that's when I had the thought - "You know, this isn't a burning...it's a soreness. And now I'm passing blood clots. It doesn't smell funny. Could I have....Kidney Stones?!"
To be continued.....
Well, no news is good news for the most part. I haven't had too many things to talk about in regards to the MS department since my last post, which should be a good sign. The unfortunate news is that now - something else has gone wrong!
Besides the classic MS symptoms that come and go (my L'hermitte's sign, the cramping toes, the fuzzy brain and fatigue), I have been generally well. That is, until mid-December, when I had terrible stomach cramping. My stomach would bellow and growl so loudly that my coworker could hear them across the office - I was certain I had some kind of obstruction, if it wasn't for the fact that at least my bowels were moving. I have always felt a sneaking suspicion that I had some kind of inflammatory bowel condition (as I read they commonly accompany MS), so I figured it was something that would have to be addressed eventually.
At the same time, my husband thought the mole on my back looked suspicious (I disagreed...it has been there my whole life!) But to placate him, I made an appointment for a general physical. I thought I would still be symptomatic with stomach pain by the time I came in - but it had subsided about four days prior to my appointment. I asked about getting my foot looked at to finally get my bunion removed, got a flu shot, and asked for my birth control and anti-depressant prescriptions to be refilled. All in all, it was a pretty uneventful visit the week before Christmas. She ordered me basic labwork and I went on my merry way.
When I went in the next day for bloodwork, I didn't expect anything to pop up or look funny. I always have slightly (as in, a few points) strange labs for a couple of figures, but nothing that has ever raised a red flag. But this time I noticed that my platelet count (which normally hovers around 400-425, a little high but nothing big) had jumped to 570. Whoa! I felt fine, so I thought maybe it was just leftover from a stomach bug or whatever was bothering me a few weeks before. She also noticed that my cholesterol numbers were all over the place, and my triglycerides were high. Okay, okay, I know I haven't been very good at exercising lately. But could these things be tied together?
I largely ignored the labs, and my doctors told me they wanted to retest in 3 months but weren't terribly concerned. My neurologist was unhappy with my Vitamin D levels (granted, they were very low) so now I had to take more Vit D. Easy enough.
I remembered reading that MS could give you issues with your bladder, and I had a history of UTIs that had no symptoms. So I did an at-home AZO stick test, and found that I had a high level of white blood cells in my urine. "That's odd," I thought, though the nitrate stick was fine, so I couldn't have an active UTI. I told my doctor that I wanted her to order a full urinalysis and I would take it when I got back from my business trip in a week.
Well, here we were on said business trip - in Las Vegas. Which means I was not at home. My 20-month-old daughter was roaming the streets with my husband while I was in classes, and I noticed on the second day we were there that I had to go to the bathroom after every class.
UH OH, says every woman I know.
I drank water and drank water some more. I paid close attention to every sensation - dammit, I feel like I have to pee again. Oh no, now it's starting to hurt. I was hating myself for even thinking about having a UTI, because now I was certain I had cursed myself, and I hadn't had one in years! I moaned to my husband and we spent a lot of time walking back and forth to the Walgreens across the street. They should have given me a job, I was in there so much! I loaded up on Pyridium (the 'numbing' stuff that turns your pee bright orange) and cranberry juice, Cystex, and AZO strips. By 10 PM, I was passing small red blood clots. And that's when I had the thought - "You know, this isn't a burning...it's a soreness. And now I'm passing blood clots. It doesn't smell funny. Could I have....Kidney Stones?!"
To be continued.....
Thursday, July 6, 2017
A Mystery Solved
Well, the flare continues. Bummer!
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
Friday, June 30, 2017
When Spasticity Strikes Back
Well, it has been a thankful long time since I have felt a need to update my MS blog. Things have been generally well. I quit the job at the sinking ship. I have a new job which will allow me to run my own office very soon - 2 weeks from now, in fact. I won't need to commute from home to work any longer. My daughter is beautiful, smart, and a joy. My husband, despite being left to watch her for several hours as I commute and while I attempt to have a life as a working mother, has no plans to leave me :).
Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.
It began about three weeks ago with a particularly hot day. I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet. It has been about a year since I felt it, briefly, after a long walk. I felt it again and again, every time I moved my head, for about three or four days.
Then, the numbness returned in my legs. Only in pieces, though. Not enough to really raise any red flags.
I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side. By the time I went to bed, I wasn't able to take a full, deep breath without pain. But by morning, it was gone. I figured all of this was due to the heat.
Well, tonight while we were in the grocery store, my husband and I were teasing each other. I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot. It was a cramp. I figured, no big deal, it's just a cramp. But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place. The muscle contraction was so strong it was moving my toes from the ball of my foot forward! Oh, man, it HURT! I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary. I couldn't walk on it. I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.
As I limped out of the store, my left foot started to feel better. However, I was cautious. I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not). And guess what? Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot! Akkk!!!! I felt like I was being attacked by my own feet. I got in the car and just sat still, massaging my feet and hoping the cramping would stop.
Since we got home, I have been trying to keep off my feet, literally. I am worried that maybe it was my shoes, maybe it was just how I was walking. I feel literally scared of walking right now. I'm afraid if I put weight on my feet, they will spasm. So I am holding still. My anxiety over it is making me walk funny, which I fear will mean I will sprain something. Every time I walk up my stairs, I get a sensation of early cramping in my foot. I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.
And, I understand better why it may be a good idea to get a handicap placard if it ever happens again. Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.
MS fucking blows. And I was doing so well! Fingers crossed that this was a one-off.
Love, MSloan
Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.
It began about three weeks ago with a particularly hot day. I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet. It has been about a year since I felt it, briefly, after a long walk. I felt it again and again, every time I moved my head, for about three or four days.
Then, the numbness returned in my legs. Only in pieces, though. Not enough to really raise any red flags.
I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side. By the time I went to bed, I wasn't able to take a full, deep breath without pain. But by morning, it was gone. I figured all of this was due to the heat.
Well, tonight while we were in the grocery store, my husband and I were teasing each other. I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot. It was a cramp. I figured, no big deal, it's just a cramp. But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place. The muscle contraction was so strong it was moving my toes from the ball of my foot forward! Oh, man, it HURT! I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary. I couldn't walk on it. I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.
As I limped out of the store, my left foot started to feel better. However, I was cautious. I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not). And guess what? Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot! Akkk!!!! I felt like I was being attacked by my own feet. I got in the car and just sat still, massaging my feet and hoping the cramping would stop.
Since we got home, I have been trying to keep off my feet, literally. I am worried that maybe it was my shoes, maybe it was just how I was walking. I feel literally scared of walking right now. I'm afraid if I put weight on my feet, they will spasm. So I am holding still. My anxiety over it is making me walk funny, which I fear will mean I will sprain something. Every time I walk up my stairs, I get a sensation of early cramping in my foot. I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.
And, I understand better why it may be a good idea to get a handicap placard if it ever happens again. Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.
MS fucking blows. And I was doing so well! Fingers crossed that this was a one-off.
Love, MSloan
Friday, January 20, 2017
Welcome To A New Year
Hey all!
I am sorry for my continued absence; turns out, raising a baby when you have MS is very difficult! I find myself getting really exhausted really quickly, I can't stay up past 10 PM most nights, and whenever I get a free moment, I want to play with my daughter, so that leaves little time for blogging. Or reading. Or eating. Or cleaning. I pretty much have no time for anything!
My MS has remained very stable since she was born, though. My right eye is still mostly useless (went dark in December 2015). I am grateful for every day that I don't have a bad symptom. A few months back, I had an honest-to-goodness MS Hug that almost floored me. I really thought I was having a heart attack. The "Hug" (still want to clock whoever came up with that name) began in the middle of my back and spread to my sides. It was painful, as if my muscles were being squeezed, which made it hard to breathe. Lying down made it worse. I called the ER to make sure, you know, I wasn't actually having a heart attack, and they told me that they couldn't really help me.
Which was then topped off by having to explain to several nurses that, yes, MS can cause pain, that it could be the cause of my current predicament, and no, not all people with MS just slowly lose control of their bodies until they can't walk. How nice.
My advice for the new year is thus: focus on the positive. I think my MS is better because I am reducing stress around me as much as possible. Remember that MS is triggered by stress - positive AND negative alike - so don't forget to breathe during the day. You'll get through it!
Love all,
MSloan
I am sorry for my continued absence; turns out, raising a baby when you have MS is very difficult! I find myself getting really exhausted really quickly, I can't stay up past 10 PM most nights, and whenever I get a free moment, I want to play with my daughter, so that leaves little time for blogging. Or reading. Or eating. Or cleaning. I pretty much have no time for anything!
My MS has remained very stable since she was born, though. My right eye is still mostly useless (went dark in December 2015). I am grateful for every day that I don't have a bad symptom. A few months back, I had an honest-to-goodness MS Hug that almost floored me. I really thought I was having a heart attack. The "Hug" (still want to clock whoever came up with that name) began in the middle of my back and spread to my sides. It was painful, as if my muscles were being squeezed, which made it hard to breathe. Lying down made it worse. I called the ER to make sure, you know, I wasn't actually having a heart attack, and they told me that they couldn't really help me.
Which was then topped off by having to explain to several nurses that, yes, MS can cause pain, that it could be the cause of my current predicament, and no, not all people with MS just slowly lose control of their bodies until they can't walk. How nice.
My advice for the new year is thus: focus on the positive. I think my MS is better because I am reducing stress around me as much as possible. Remember that MS is triggered by stress - positive AND negative alike - so don't forget to breathe during the day. You'll get through it!
Love all,
MSloan
Monday, April 4, 2016
ChatMS 4/4/2016
Hey all!
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now. Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now. Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
Saturday, April 2, 2016
At The Bitter End -
Happy Saturday, Everyone!
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
Wednesday, March 30, 2016
ChatMS 3/28/2016
ChatMS this week was all about cognitive issues. I'm a few days late, but I'm still trying to get the word out there!
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Saturday, March 26, 2016
Finally.... A Plan!
I finally got through to my neurologist!
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
Monday, March 21, 2016
ChatMS 3/21/2016
Hey all!
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
Saturday, March 19, 2016
The Power of ... Empowerment
My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related. While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
Wednesday, March 16, 2016
MSminds Chat - 3/16/2016
I found another chat on Twitter today - this one is called MSminds!
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Monday, March 14, 2016
ChatMS, 3/14/2016
Alright, peeps! Time for another installment of post-hours ChatMS!
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
Sunday, March 13, 2016
Optic Neuritis - The Saga Continues
Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut. I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
Thursday, March 10, 2016
ChatMS - 3/7/2016
Good evening, all!
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since#ChatMS has launched. Can you believe it or what?
Woo, go #ChatMS!
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve#ChatMS
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to#ChatMS?
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future#ChatMS sessions so you can gain more insights?
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! Keep the conversation going! :)
MSloan
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!
I've been supporting MS Awareness Month on my facebook page, posting a fact every day. Don't know if that will continue as regularly, but I want to educate the people around me. Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress. We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.
It was the celebration of ChatMS' 1st year in existence! Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!
Q1: It’s been one entire year since
Woo, go #ChatMS!
Q2: How long have you been participating in #ChatMS?
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
I've been participating for about six months! I came across it one day when I just happened to get home from work early. In California, the chat starts at 4 PM.
Q3: How did you hear about #ChatMS and what made you join?
Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early. I had recently deactivated my FB account and the people I followed were big #ChatMS participants!
Q4: Do you remember what our first (or your first) #ChatMS was about?
You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders. I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.
Q5: What does our weekly chat about #MultipleSclerosis mean to you?
I love #ChatMS and how it allows me to connect with others who have this disease. We have it, it does not have us. But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.
Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!
(Not applicable for post-chat commentary)
Q7 - What can we do to improve
I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.
Q8 - have you been able to make connections and build a stronger support system thanks to
Absolutely - and it gives me great blogging material!! :)
Q9 - What can we do to get others to join future
Maybe have more than one per week, in different time zones. Those of us out here on the west coast can't participate if we're working!
That's all, folks! Keep the conversation going! :)
MSloan
Friday, March 4, 2016
Looking to the future ...
I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Monday, February 29, 2016
Coming Out of the MS Closet
Tonight, I finally did it. I finally just bit the bullet and stopped beating around the bush. I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS. No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!
Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.
It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."
Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.
I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.
Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.
People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?
March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.
Wear ORANGE!
ChatMS: 2/29/2016
Happy Leap Day!
Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?
I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis. Like my depression, I gather many will be surprised, as this is just as invisible. If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?
Q2 - What have you done in the past to raise Multiple Sclerosis awareness?
This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!
Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?
Rats - no. But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!! :)
Q4 – What do you think is the best media to spread MS awareness?
Face-to-face, absolutely. I have spoken with many patients about my MS and been thanked for opening up about my struggles with them. Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness. When we battle our illnesses together, we become a team, and they trust me more as a provider. I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.
On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course!
Q5 – When asked, how do you describe Multiple Sclerosis?
I say that my brain likes to eat itself! I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin. When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber. So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis. I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering. I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.
Q6 – What items can be frustrating when raising awareness?
"But you look fine, so it can't be that bad."
You have no idea what this actually feels like. I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all. On my great days, of which I usually have many in a row, I forget about the MS and just live. It's an excellent feeling. But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it. I've felt intermittently sick since late 2009. Before that, I was a generally sick kid, always getting sinus infections and having ear problems. I'm really ready to not be sick anymore.
The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it. When I start telling people I know about my disease, I'm sure they'll start to care. But you have to have a reason to get behind something. People usually have a reason to get really 'into' wearing pink for breast cancer. I want more people to find reasons to wear orange!
Q7 – What would you consider a successful MS Awareness effort?
Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research. And not compare the different people they know to me; have a healthy respect that everyone's case is different. I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS. Everyone's case is different. I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.
Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?
I'll admit, I wish I did more to spread awareness in this respect. But I have so rarely been asked for 'more information,' this feels like an empty question.
That's all, folks!! Have a great week -
MSloan
Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?
I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis. Like my depression, I gather many will be surprised, as this is just as invisible. If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?
Q2 - What have you done in the past to raise Multiple Sclerosis awareness?
This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!
Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?
Rats - no. But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!! :)
Q4 – What do you think is the best media to spread MS awareness?
Face-to-face, absolutely. I have spoken with many patients about my MS and been thanked for opening up about my struggles with them. Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness. When we battle our illnesses together, we become a team, and they trust me more as a provider. I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.
On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course!
Q5 – When asked, how do you describe Multiple Sclerosis?
I say that my brain likes to eat itself! I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin. When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber. So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis. I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering. I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.
Q6 – What items can be frustrating when raising awareness?
"But you look fine, so it can't be that bad."
You have no idea what this actually feels like. I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all. On my great days, of which I usually have many in a row, I forget about the MS and just live. It's an excellent feeling. But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it. I've felt intermittently sick since late 2009. Before that, I was a generally sick kid, always getting sinus infections and having ear problems. I'm really ready to not be sick anymore.
The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it. When I start telling people I know about my disease, I'm sure they'll start to care. But you have to have a reason to get behind something. People usually have a reason to get really 'into' wearing pink for breast cancer. I want more people to find reasons to wear orange!
Q7 – What would you consider a successful MS Awareness effort?
Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research. And not compare the different people they know to me; have a healthy respect that everyone's case is different. I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS. Everyone's case is different. I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.
Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?
I'll admit, I wish I did more to spread awareness in this respect. But I have so rarely been asked for 'more information,' this feels like an empty question.
That's all, folks!! Have a great week -
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
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