My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related. While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
Showing posts with label moving forward. Show all posts
Showing posts with label moving forward. Show all posts
Saturday, March 19, 2016
Sunday, March 13, 2016
Optic Neuritis - The Saga Continues
Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut. I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
As an artist, this is somewhat mournful, since I don't see detail the way I used to. Even with both of my eyes together, there is a constant sense that something just isn't right. Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well. I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.
How I'm seeing, Good Eye Vs. Bad Eye:
When you have something like ON, once you mention it, that's all anyone wants to hear about it. When it first occurred, my coworkers would ask how my eye was, for about the first two weeks. When it didn't improve, they stopped asking. I haven't been asked about it in over 10 weeks. Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition. I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.
That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others. It's awkward. No one wants to talk about it, and it isn't real to them. It can't "be that bad." But of course they feel that way, they don't have to live with it! It just isn't real. And honestly, it wasn't real to me in regards to my patients until it reached a certain point. Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!
My positivity blog is helping with how I deal with the day to day. I wish I wasn't facing drama at my workplace, but I am trying to rise above it. It is so petty to fight with one another as adults, isn't it? There are so many much more important things.
I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea. I know everyone's ON is different - this is very close to what mine actually looks like.
About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan
Friday, March 4, 2016
Looking to the future ...
I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Monday, February 22, 2016
ChatMS - 2/22/2016
Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Monday, 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
Tuesday, March 10, 2015
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!
Monday, September 1, 2014
Updating on the Times -
Funny how when things are going well, you are less likely to update on things like that. But I think it is even more important than when reporting poor condition!
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
Saturday, May 17, 2014
Results of Art Therapy, 5/18/14
This is the effort I put forth this evening since my last post. Nothing compared to my lion, but he'll have to do. Meet my "Shere."
Love all,
Sloan
Love all,
Sloan
MS - Instructions Not Included
When I started to not feel 'right' back in late 2009/early 2010, I had a simple thought run through my head every day that things felt off:
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
Friday, April 4, 2014
Don't Move, Don't Breathe, Don't Do Anything Except... Pray
Today was a rough day.
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
Wednesday, April 2, 2014
The Swing of Things
In July, my husband and I bought 20 passes to the local rec center to work out. We are not big workout people, by any means. I am a fairly skinny person, so cardio work just makes me feel even more small - I try some weight training, but let's face it, I'm much more of a yoga person anyway. My husband, on the other hand, is a bit larger (no thanks to my cooking) and has things like diabetes running in his family, so the need is much greater for him to make the effort. He is a naturally stocky person, so he bulks up like a Viking quite nicely when he puts in a little time - win/win, right?
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
Monday, March 31, 2014
For every 'to,' there is a 'fro'
I just got home from work about twenty minutes ago. And not even ten minutes into walking in the front door, there was an unexpected knock. My friend, who is one of the few whom I've told about the diagnosis, came by to surprise me with a bouquet of sunflowers.
What a wonderful gesture! Faith in humanity restored. Even though I dislike few things more than unexpected visitors (as I am a slob and could not invite her in due to the status of my apartment), that was a great little surprise.
I hope that today, someone in some way, brings you some sunflowers, too.
Love all - :)
What a wonderful gesture! Faith in humanity restored. Even though I dislike few things more than unexpected visitors (as I am a slob and could not invite her in due to the status of my apartment), that was a great little surprise.
I hope that today, someone in some way, brings you some sunflowers, too.
Love all - :)
Saturday, March 29, 2014
An Open Letter to Unsolicited Advice
I know you're trying to make me feel better. I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay. You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
Wednesday, March 26, 2014
Making Decisions
I decided to go with Gilenya. I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues. It's the day after my birthday, FAN-TAS-TIC.
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Sunday, March 23, 2014
Bad News or Good News?
My name is Margo. I'm 25 years old. And less than one week ago, I was officially diagnosed with Multiple Sclerosis, or MS. I prefer to call it my brain's "self-destruct button."
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
Subscribe to:
Posts (Atom)