Hi, my name is MSloan, and I am a shopaholic.
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
Showing posts with label what sucks. Show all posts
Showing posts with label what sucks. Show all posts
Tuesday, January 23, 2018
Thursday, July 6, 2017
A Mystery Solved
Well, the flare continues. Bummer!
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
Monday, January 25, 2016
ChatMS - 1/25/2016
This week's Chat MS was just about the new year. I'm ready for a new start, aren't you?
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
Don't forget to copy/paste to your own blog, and keep the conversation going!
Q1 – How is life in 2016 treating you so far?
It's going ok. I'm excited for my baby to come in April. I'm struggling with my mother. I'm struggling a little at my workplace. But in general, things are overall good!
Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?
Yes and no. I don't really have New Year's Resolutions - I have themes. My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them. I guess this does heavily tie into my MS as well as many other things.
Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?
I think so!
Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?
There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.' People need to understand that no two cases are the same. I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable. It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses. It doesn't make the problems go away.
Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)
My baby is the biggest thing on my mind. After she arrives, I will be able to focus on what's new!
Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?
Well my biggest goal in life is to be a rock star. Always has been, always will be :)
https://soundcloud.com/margo_sloan
Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?
I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences. Lhermitte's sign, and dealing with people around them.
Love to you all! - MSloan
Monday, January 18, 2016
ChatMS 1/18/2016
Hello all!
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
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
Chat MS - 11/30/2015
This last Chat MS was all about MS research, a topic dear to my little science heart! Please don't hesitate to copy/paste to your own blog to keep the conversation going!
Q1 – Do you keep up to date with latest#MultipleSclerosis news and research articles?
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in#MultipleSclerosis information?
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a#MultipleSclerosis cure in the next 10 years?
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Q1 – Do you keep up to date with latest
I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments. I do of course read the ones that get distributed by the National MS Society.
Q2 – What is your “go to” place for the latest in
National MS Society and, believe it or not, Twitter. Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters. I recommend it to anyone looking for regular answers and a real community.
Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?
Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me. However, my dad hears things all the time and is really excited about them for me. He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month. My dad doesn't talk to me on the phone. So yeah, he thought it was a pretty big deal!
Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?
ABSO-FREAKING-LUTELY. I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder. I enrolled just after my diagnosis. It is SO important to participate in research, even if it isn't a clinical trial.
Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?
This is the sad reality of science. Single studies are not enough to effect real change. Some studies look great on the surface, but repeat studies do not find the same thing. There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.
Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?
I think this is excellent! But right now - - I am a bit skeptical. I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.
Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms?
Both of course! Stopped progression is incredibly important to me. More research on medications and the JC virus. More research on effective medications that don't cause OTHER problems.
Q8 – Do you think we will see a
.... realistically?
No. I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses. Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.' There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing? Or is it because of the medication? This is why MS is so hard to pinpoint.
Thanks for reading, all! MSloan
Thursday, November 26, 2015
Chat MS - 11/23/2015
This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Thursday, October 29, 2015
Feeling Low
Sometimes I feel like I'm climbing a mountain with no summit and no oxygen. I keep climbing and climbing, but I just can't get there. I am frozen with cold. I can't feel my feet. I can't feel my fingers. But I keep climbing anyway.
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
Thursday, October 22, 2015
MS, Real Life, Real Support, Real Fear
Did I say I was done for the night? I lied. I have another thing on my mind that is really grinding me.
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
Friday, June 5, 2015
A Changing World
Hello again, all. I hope this finds you all well!
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
Tuesday, March 10, 2015
Trying to Heal
Hello!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Monday, September 1, 2014
Updating on the Times -
Funny how when things are going well, you are less likely to update on things like that. But I think it is even more important than when reporting poor condition!
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
Saturday, May 17, 2014
MS - Instructions Not Included
When I started to not feel 'right' back in late 2009/early 2010, I had a simple thought run through my head every day that things felt off:
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
"I can't wait to feel normal again."
With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time. Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.
The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past. Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.
Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people. I started writing fanfiction, drawing, and painting again. I haven't painted in years, and I started doing portraiture work of all things! Portraits are insanely difficult, but I loved every minute of it. I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas. It's the size of my kitchen table.) It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department. I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel. I wrote a novel in 6 months for goodness' sake.
But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis. I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.
So tonight, I'm going to try and do something that makes me feel happy again. Tonight I'm going to start a new painting. Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house. I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now. I hope they understand.
I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.
Love all.
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 24, 2014
Qualifications
Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Thursday, April 17, 2014
The "Pull-Away" Game
Remember how I was struggling with whether or not I should tell people about my diagnosis? I'm glad I didn't spread the word like wildfire or make a big deal about it publicly. The reason? The one place I really had no choice to, my job, has been a great little petri dish for how people actually respond in this situation.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
At work, I felt like I had to share what was going on because of the nature of my job. I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem. My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned. But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way. So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look. She could tell by looking at me that I suspected, but hadn't said anything. But when my boss came in, she overheard what I had said, and of course pulled me aside with concern. "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes. So when I went to the ER the next day, I didn't hesitate to tell her what they found.
As a result, everyone in my immediate office knew what was going on because they knew. And not everyone in the office responded the same way. There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems. One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me. You'd think you'd say something. But it's obvious that the whole ordeal makes her uncomfortable. I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.
I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.' Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.' But am I really? Or am I just faking myself out of feeling really upset?
My coworker, one in particular, is pulling away. I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.
I think in this circumstance, I am happy to have depression. Depression, in a word, tends to 'mute' things. I don't describe my depression as a presence of sadness; it is more an absence of joy. It's really an absence of all sorts of emotions. When I was told I had MS, I didn't get upset - I asked what we did next. Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him). But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.' I have to thank my depression right now for keeping me grounded. No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes. Thanks, depression!
I guess the point is, I understand why people pull away. I know it makes people uncomfortable. But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK.
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
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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