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
Monday, September 1, 2014
Thursday, June 19, 2014
Relocated
Hello all! I know it has been a while since I posted, but that is a good thing for sure.
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
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.
Monday, May 12, 2014
Star Wars
Today, I got a call from my neurologist. Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.
My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones. This is not a good sign. Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!
I have done a little research on the drug they are going to put me on next. Let's learn about it together!
1) What is it?
The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post. I hope you find it mildly amusing :)
Acthar is called an Adrenocorticotropic hormone, or ACTH. It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better. I don't feel good about that, but let's move on!)
2) What makes Acthar different from the steroid injection treatment?
Acthar is not a steriod, but it acts something like one. It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.' You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems. Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS! It basically tells your immune system and inflammatory response to STFU. It is essentially a natural steroid. It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.
Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot. It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg. You have to give this drug to yourself in a syringe for a number of days when you receive it. I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over. I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now. I haven't told him yet.
It will be a fun ride for sure.
3) Why do you need this drug?
You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated. I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU. That is where Acthar comes in.
My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option).
4) Okay, so it should halt the progression. What are the downsides?
It can cause wicked bad mood swings. There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks. General body swelling is another side effect. This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.
I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break! I hope this helps someone out there get a better idea of what is up ahead. I will continue to update as a know more. Thanks for listening.
Let's hope Admiral Ackbar isn't right this time...
Thursday, May 8, 2014
Muted
Depression is not a presence of sadness. Rather, it is more an absence of joy.
I am steeped in quite a pit of depression right now. It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.
I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine. Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward. And does this mean that my neurologist can't get a report on the brain, even though they took the images? How does that make sense? If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?
I'm supposed to start Gilenya next week. I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before. Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.' 'Okay, thanks, I will get them set up.' Wait a few days, hear nothing. Call back about the eye test - still no word. EKG and blood test? Still nothing. Call the neurology MA again, feel like I get in trouble for not having it done. But you told me they would call me? Okay, I'll find a place to do it. Okay, we'll move the start date a week out. You know I'm supposed to move here right? Okay, I'll wait to hear from them. What's that? That eye place doesn't want to do that test, they need to refer me out again? Okay, I'll wait. Oh, now you say I have to set up the other tests. Fantastic. I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it. Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that. Haven't you done this before? How am I supposed to know how this works? Okay, I'll do that then. Eye test today.
Did I mention I'm graduating tomorrow?
I am so unbelievably stressed out. I feel like I'm having another exacerbation in the middle of all this. I am having the MS hugs so frequently that I don't want to eat, which makes it worse. I'm not feeling as tingly, which is good, but that changes by the hour. I feel like crying all the time, and finally started now that I'm not at work. I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job. The new job! It starts in a month. I am not ready. I need a break. I have no time for a break, now I have to pack to move. I have no energy.
This feels like a spiral. I can't get a hold of anything. There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it. Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that? Why do I have to do that by myself? Oh yeah, because I'm broke. Because there's no good way to end up in this situation, but this particularly sucks. I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it. So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it." "I think if God wants me to learn something, I better learn it fast, haha!" "It won't help me get better to sit and feel sorry for myself about it. Yeah, good for me. I'm doing well."
Well, here's a confession for you, bloggies. I'm not handling this very well. I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days. I put on a brave face for all these medical tests, but I HATE needles. I have been doing really well with all of it, gritting my teeth. But I don't want to be put on a drug that will force me to inject myself every day. I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger. This is terrifying, I feel weak and unprepared for life. I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up. I feel like running away. HA - running. I made a running joke. Get it? Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline. Makes running really difficult. HA HA HA HA HA.
This bloody sucks. I graduate tomorrow and I don't even care. I want my family to celebrate without me. Why do I need to be there again? My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since. The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc. We are going to have a backyard barbecue at my mom's house, decided yesterday. She is upset that my dad will be there. It's a family event. My husband is graduating too, so his giant clan of a family will be there. They all have small children. My mom has dogs. It's turning into a mess really fast. I don't want to go. I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty. I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet. I can't afford to eat better, I've had my last paycheck. I feel like an observer in my own life right now, unable to tap in. Why can't I tap in?
Thanks for listening, bloggies. Until next time.
I am steeped in quite a pit of depression right now. It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.
I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine. Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward. And does this mean that my neurologist can't get a report on the brain, even though they took the images? How does that make sense? If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?
I'm supposed to start Gilenya next week. I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before. Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.' 'Okay, thanks, I will get them set up.' Wait a few days, hear nothing. Call back about the eye test - still no word. EKG and blood test? Still nothing. Call the neurology MA again, feel like I get in trouble for not having it done. But you told me they would call me? Okay, I'll find a place to do it. Okay, we'll move the start date a week out. You know I'm supposed to move here right? Okay, I'll wait to hear from them. What's that? That eye place doesn't want to do that test, they need to refer me out again? Okay, I'll wait. Oh, now you say I have to set up the other tests. Fantastic. I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it. Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that. Haven't you done this before? How am I supposed to know how this works? Okay, I'll do that then. Eye test today.
Did I mention I'm graduating tomorrow?
I am so unbelievably stressed out. I feel like I'm having another exacerbation in the middle of all this. I am having the MS hugs so frequently that I don't want to eat, which makes it worse. I'm not feeling as tingly, which is good, but that changes by the hour. I feel like crying all the time, and finally started now that I'm not at work. I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job. The new job! It starts in a month. I am not ready. I need a break. I have no time for a break, now I have to pack to move. I have no energy.
This feels like a spiral. I can't get a hold of anything. There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it. Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that? Why do I have to do that by myself? Oh yeah, because I'm broke. Because there's no good way to end up in this situation, but this particularly sucks. I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it. So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it." "I think if God wants me to learn something, I better learn it fast, haha!" "It won't help me get better to sit and feel sorry for myself about it. Yeah, good for me. I'm doing well."
Well, here's a confession for you, bloggies. I'm not handling this very well. I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days. I put on a brave face for all these medical tests, but I HATE needles. I have been doing really well with all of it, gritting my teeth. But I don't want to be put on a drug that will force me to inject myself every day. I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger. This is terrifying, I feel weak and unprepared for life. I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up. I feel like running away. HA - running. I made a running joke. Get it? Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline. Makes running really difficult. HA HA HA HA HA.
This bloody sucks. I graduate tomorrow and I don't even care. I want my family to celebrate without me. Why do I need to be there again? My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since. The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc. We are going to have a backyard barbecue at my mom's house, decided yesterday. She is upset that my dad will be there. It's a family event. My husband is graduating too, so his giant clan of a family will be there. They all have small children. My mom has dogs. It's turning into a mess really fast. I don't want to go. I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty. I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet. I can't afford to eat better, I've had my last paycheck. I feel like an observer in my own life right now, unable to tap in. Why can't I tap in?
Thanks for listening, bloggies. Until next time.
Monday, April 28, 2014
How I Feel Today.
Please give a listen, love and thank you.
I need to get back into the music...
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I need to get back into the music...
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
Sunday, April 27, 2014
Picking Poison Again
Well, saw the neurologist on Friday. Or, the PA rather, who is very nice. Though it seems to be a running theme that people either never meet their doctor, or their doctor doesn't care - this is very frustrating.
I felt like they forgot why I was there. The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week. Then, we were going to re-do the MRIs, and start Tysabri. When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.
So we are back to the drawing board.
The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly. Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated. This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me. It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position. I have a stiff neck, but never had that before the last round of steroids.
This tells me that the likelihood of my failing the second round of steroids? Might be pretty high. I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it. I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.
They are going to start me on Gilenya for the time being because I'm about to move out of state. I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move. Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU. Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.
Again, sorry that this sucks for you. But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress. ::sarcastic thumbs up::
I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to. She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab. I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin. I'm so happy that she didn't give me the ridiculous pity look. If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.
That's it for now. Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated. Will have to hope my insurance will accept another round of MRIs. And I'm not bringing mom to another appointment - I just can't right now. Love to all.
I felt like they forgot why I was there. The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week. Then, we were going to re-do the MRIs, and start Tysabri. When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.
So we are back to the drawing board.
The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly. Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated. This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me. It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position. I have a stiff neck, but never had that before the last round of steroids.
This tells me that the likelihood of my failing the second round of steroids? Might be pretty high. I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it. I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.
They are going to start me on Gilenya for the time being because I'm about to move out of state. I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move. Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU. Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.
Again, sorry that this sucks for you. But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress. ::sarcastic thumbs up::
I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to. She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab. I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin. I'm so happy that she didn't give me the ridiculous pity look. If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.
That's it for now. Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated. Will have to hope my insurance will accept another round of MRIs. And I'm not bringing mom to another appointment - I just can't right now. Love to all.
Thursday, April 24, 2014
Qualifications
Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Thursday, April 17, 2014
The "Pull-Away" Game
Remember how I was struggling with whether or not I should tell people about my diagnosis? I'm glad I didn't spread the word like wildfire or make a big deal about it publicly. The reason? The one place I really had no choice to, my job, has been a great little petri dish for how people actually respond in this situation.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
Tuesday, April 15, 2014
Short Circuit
The unknown is the scariest part of this process. When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread. Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.
Today the sensation is just... well, numbing. An absolutely constant tingle in the legs that is distracting. It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same. Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.
It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure. I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment. But nevertheless, it is embarrassing, and it didn't put my day off at a good start. Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out. Just a bummer in general.
With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better. I have to put faith in these steroids, but at the same time, I am not so sure. If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?
I wish I got the medical bill in the mail already. All this waiting is driving me nuts. I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?
Today the sensation is just... well, numbing. An absolutely constant tingle in the legs that is distracting. It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same. Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.
It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure. I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment. But nevertheless, it is embarrassing, and it didn't put my day off at a good start. Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out. Just a bummer in general.
With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better. I have to put faith in these steroids, but at the same time, I am not so sure. If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?
I wish I got the medical bill in the mail already. All this waiting is driving me nuts. I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?
Sunday, April 13, 2014
Lhermitte's Sign
Cool! Being a scientist can make some of the more interesting parts of MS exciting, despite how disconcerting it can feel.
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Friday, April 11, 2014
Infusions: Fun for the Whole Family!
Today I started the second round of Solumedrol, an intravenous steroid that I will have again tomorrow and Sunday.
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
Thursday, April 10, 2014
Just Keep Swimming
Okay, today I am trying to have a better attitude.
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Wednesday, April 9, 2014
Merit Badge for Demyelination
Oy. Okay, so today has been one of those really rough days.
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
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
Friday, March 28, 2014
Sensational
The weirdest part of this latest flare up is the lasting sensations.
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
Margo
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
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
Tuesday, March 25, 2014
Pick Your Poison
Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
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
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