Well, not much to report. No change.
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
Showing posts with label making decisions. Show all posts
Showing posts with label making decisions. Show all posts
Tuesday, January 30, 2018
Friday, March 4, 2016
Looking to the future ...
I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Monday, February 22, 2016
ChatMS - 2/22/2016
Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank... I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Saturday, December 5, 2015
Bye bye, right eye
I am... more than a little bit disappointed. Well, I guess disappointed isn't the right word.
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
Monday, November 16, 2015
Chat MS - 11/16/2015
Hey all!
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
Friday, June 5, 2015
A Changing World
Hello again, all. I hope this finds you all well!
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
Friday, March 6, 2015
Hits the Fan
Congrats, you are 1 year without another major flare!
You win: One Institutionalized Mother!
You win: One Institutionalized Mother!
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
Monday, September 1, 2014
Updating on the Times -
Funny how when things are going well, you are less likely to update on things like that. But I think it is even more important than when reporting poor condition!
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
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! :)
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.
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
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.
:)
Saturday, March 29, 2014
An Open Letter to Unsolicited Advice
I know you're trying to make me feel better. I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay. You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?
I'm not trying to be difficult, and I am not trying to feel special or more injured. But I am not the people that you know, the people that you say cured their problem and you would never know it. Of course you would never know it, this problem is invisible. Have you asked them to tell you what they actually feel every day? Did you not notice that I haven't volunteered information, or talked to you about it?
Did it occur to you that I'm not handling this very well? Oy. In my profession, we thrive on counseling and communication. So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting. I'm not bullshitting. Who the hell would make this up? What kind of a sick person do you have to be to pretend to have a degenerative illness?
I don't want to talk about it like that, I don't want to doom my psyche with negative thinking. But sometimes negative thinking is the reality, too, isn't it? Sometimes we have to consider the worst to move on for the best. And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better. If I could run my tingling into the ground, I would. But I'll be honest with you, physical exertion right now makes me feel funny. It isn't enjoyable. And I mean all kinds of physical exertion, which is terrifying, and upsetting. How do you think my husband feels?
I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising. I don't know why this infuriates me so much, but it does. It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay. But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared. I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning. Because it is THAT unpredictable. I could wake up, go to work, and feel shaky and nauseated all day for no reason. You think I didn't try going to the gym? You think I didn't try eating differently? You think I didn't do everything I possibly knew how to do to make that go away? What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.
Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified? Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before? I'm glad I'm not a damned surgeon, for crying out loud! Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!
Deep down, I know you say these things because you need to feel less worried on my behalf. That's great, thank you, I appreciate that. But understand that right now, I just need to feel cared about, not downplayed. The light at the end of the tunnel for school looks bleak and hard to reach right now. And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself. I already feel bad enough about myself on a regular basis. I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.
....
The truth of the matter is, I don't think about it all the time. I write this blog in the weak spots. I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud. I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons. I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus. Living with the symptoms? Eh - it is 'not so bad.' It is scary and horrible and uncomfortable, but it's livable. I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people? I am sure that when I start this drug, some things will change. Maybe it will make me feel normal again. Maybe I will be able to get back to the painting I worked so hard to cultivate this year.
My word for 2014 is 'joy.' I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.
Margo
Wednesday, March 26, 2014
Making Decisions
I decided to go with Gilenya. I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues. It's the day after my birthday, FAN-TAS-TIC.
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Right now, I'm struggling with the decision of telling people about my diagnosis. You know how the internet is, well, a semblance of anonymity? I have always been a very active person with social media, and I probably have way too many accounts to keep track of. So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter. I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.
In real life, however, having a chronic illness can be very different and difficult to share. You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'. What is NKOPA? The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions. As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use. My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.
The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all. If I could have kept my legs from going numb by eating more grapes, I would have. I would have drowned myself in grapes (and I don't even drink, haha!) But that is not reality. Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.
By the way, do you want to know how to tell if someone is Vegan? Don't worry. They'll tell you.
So today I am asking for some responses. Did you tell people in your immediate circles when you got your diagnosis? Did you tell anyone at all? How did the people in your life respond? I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead). I would love to hear some real-life experiences of what you went through when you were first diagnosed.
Thanks all, Margo
Tuesday, March 25, 2014
Pick Your Poison
Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
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