I am... more than a little bit disappointed. Well, I guess disappointed isn't the right word.
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
Saturday, December 5, 2015
Chat MS - 11/30/2015
This last Chat MS was all about MS research, a topic dear to my little science heart! Please don't hesitate to copy/paste to your own blog to keep the conversation going!
Q1 – Do you keep up to date with latest#MultipleSclerosis news and research articles?
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in#MultipleSclerosis information?
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a#MultipleSclerosis cure in the next 10 years?
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Q1 – Do you keep up to date with latest
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Thursday, November 26, 2015
Chat MS - 11/23/2015
This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Monday, November 16, 2015
Chat MS - 11/16/2015
Hey all!
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
Monday, November 9, 2015
Chat MS - 11/09/2015
This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
Saturday, October 31, 2015
Baby Blanket
I started a baby blanket last night! Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down! I had just enough energy to take my prenatal and crawl into bed.
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Thursday, October 29, 2015
Feeling Low
Sometimes I feel like I'm climbing a mountain with no summit and no oxygen. I keep climbing and climbing, but I just can't get there. I am frozen with cold. I can't feel my feet. I can't feel my fingers. But I keep climbing anyway.
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
Monday, October 26, 2015
ChatMS - 10/26/2015
Tonight's ChatMS was all about intimacy. I appreciate all of your support and participation, feel free to comment or copy/paste for your own blogs!
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
Sunday, October 25, 2015
About Something Else
I don't want to make my mother suffer. That isn't what I want.
But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage," "dlalkl oifd them murdsere3rklesdg."
I AM DIRECTLY COPY/PASTING HERE. My mother is a master typist. This person... needs help!!
I can't get her help if she won't seek it herself. I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself. Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:
"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life. and I mean there is NOTHING TOO LOW for you TO DO."
These messages are NOT being instigated by anything at all. I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said. My mother is the only one who's never seen an ultrasound of my baby. She doesn't know my doppler came in, because she wouldn't answer even if I would call. But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father. Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.
My father is not a murderer. I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold. It has only gotten worse.
What... what do I do?
MSloan
But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage," "dlalkl oifd them murdsere3rklesdg."
I AM DIRECTLY COPY/PASTING HERE. My mother is a master typist. This person... needs help!!
I can't get her help if she won't seek it herself. I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself. Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:
"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life. and I mean there is NOTHING TOO LOW for you TO DO."
These messages are NOT being instigated by anything at all. I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said. My mother is the only one who's never seen an ultrasound of my baby. She doesn't know my doppler came in, because she wouldn't answer even if I would call. But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father. Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.
My father is not a murderer. I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold. It has only gotten worse.
What... what do I do?
MSloan
Saturday, October 24, 2015
New Hope
No, not Star Wars. MY new hope!
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
Thursday, October 22, 2015
MS, Real Life, Real Support, Real Fear
Did I say I was done for the night? I lied. I have another thing on my mind that is really grinding me.
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
And it goes around and around and around -
Well, I have an MRI scheduled for Saturday morning, bright and early.
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
Wednesday, October 21, 2015
T Minus...
I'm giving it until Friday to see if things improve. T
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
Tuesday, October 20, 2015
Relapse?
Hey all. Today has been an interesting day.
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Monday, October 12, 2015
#ChatMS
I just participated in my first Twitter #ChatMS - it was excellent! I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world. It's so great getting to know all of you as we share in this journey together.
I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy? WHY NOT, I SAY!
So the next post will be the progress on Squishy thus far. Love to all! And thank you for participating, you make me brave!
Miss Sloan :)
twitter.com/revelwoman
I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy? WHY NOT, I SAY!
So the next post will be the progress on Squishy thus far. Love to all! And thank you for participating, you make me brave!
Miss Sloan :)
twitter.com/revelwoman
Thursday, August 27, 2015
My, how things have changed...
It has been a strange last few months.
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Friday, June 5, 2015
A Changing World
Hello again, all. I hope this finds you all well!
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
Tuesday, March 10, 2015
Gilenya Lookout -
Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC. We'll see what comes of this!
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
Trying to Heal
Hello!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Friday, March 6, 2015
Hits the Fan
Congrats, you are 1 year without another major flare!
You win: One Institutionalized Mother!
You win: One Institutionalized Mother!
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
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