I just participated in my first Twitter #ChatMS - it was excellent! I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world. It's so great getting to know all of you as we share in this journey together.
I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy? WHY NOT, I SAY!
So the next post will be the progress on Squishy thus far. Love to all! And thank you for participating, you make me brave!
Miss Sloan :)
twitter.com/revelwoman
Monday, October 12, 2015
Thursday, August 27, 2015
My, how things have changed...
It has been a strange last few months.
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Friday, June 5, 2015
A Changing World
Hello again, all. I hope this finds you all well!
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
Tuesday, March 10, 2015
Gilenya Lookout -
Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC. We'll see what comes of this!
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
Trying to Heal
Hello!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Friday, March 6, 2015
Hits the Fan
Congrats, you are 1 year without another major flare!
You win: One Institutionalized Mother!
You win: One Institutionalized Mother!
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
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