It's been a few months, and I've realized something.
My medical history is a full one, for sure. This year alone, I will have trumped what most people experience in their medical lives until they reach their mid to late 60's. In the last four years, I have learned more about myself and my disease(s) than my medical professionals typically know off the bat. It has made me a better clinician to my patients, and it has made me more empathetic as a human.
But most importantly, I feel it is vital to stress one fact: my life is not hard.
I say this now, having lived a hard life. Sure, I can sew sonnets of woe for my past, I'm even writing a book, and I could elicit an "awww" response with a genuine story every day if I wanted to. But I don't. Because as hard as my life has been, I owe it to the world not to complain about it - and because I know that, right now, it is not hard.
I have a husband who loves me, and who is so patient with me and my many idiosyncracies. I find joy in the stupidest things - from finding a clutch of snail eggs on my aquarium wall, to watching my bunnies leap over each other in the yard. I pulled the weeds in the front of my home today, feeling pride that I have a place to keep nice. I admired my daughter for minutes on end this evening, watching her jump around in her pajamas and yell out colors. I love watching her grow. I am at peace. And, most of all, I am happy.
I know a large part of my happiness is due to my medication - when I was stricken with anxiety 24/7, I could count the days that I felt well because they were so few that I had to take stock of them. Just before I was diagnosed with MS was one of these times - and it came crashing to a halt because of a public panic attack. I don't have those any more. Things have somewhat swung the other way now, to tell you the truth - I watch emotional films and listen to sad songs and do not shed a tear. I haven't really cried in months. I welled up at the end of "13 Going On 30" the other day for about a minute - then it dried up. I don't expose myself to feelings of anxiety or sadness on purpose any more, and I think this is a big reason why my brain doesn't process those emotions as readily as it used to.
I am very pleased that, at 30 years old, I am content with where I am in life. I love my job. I love my family. I love my home, my pets, my plants. I even like myself most days, a huge change from where I have been.
No - I am not healthy. But my life isn't hard.
I know plenty of healthy folks who are beautiful, put-together, and miserable.
There is a balance of life - what we are given, and what we do with it. I choose to make the most of what I have been given - even if that set of cards seems like a shit hand at first. You never know what will be wild!
Love all, MSloan
Showing posts with label healing. Show all posts
Showing posts with label healing. Show all posts
Sunday, July 8, 2018
Wednesday, May 25, 2016
"Good" Grief
Okay, blog. I'm ready to talk a little, now.
My mother killed herself on May 5th of this year, just days after my daughter was born. I will never be able to forget the way my heart sank when I answered the knocking on my door to find two police officers and a chaplain. I knew exactly what they were going to say, but I didn't want to hear it. I was too afraid to admit to myself that I already knew what was going on; I had suspected it since the day before, when I called her, and received no answer.
My mom and I had a strained relationship over the past ~18 months or so, mostly because she was experiencing a personality change. I believe in my heart that she was suffering from early dementia or Alzheimer's. She was 62 years old. It was too early for that bullshit, but it was happening before my eyes. My mother, a master typist and pianist, was writing me hundreds (and yes, literally hundreds) of emails at least weekly, many of which were frighteningly banged out on her keyboard in all caps.
I reached out to family and her friends, begging, pleading for help. Clearly, something was very wrong. Many of them agreed, but didn't know what to do, and when I became pregnant they became all the more insistent that I distance myself from her - and when I lost vision in my eye in December because of an MS flare, they were even more assertive in their recommendations. I couldn't do it. My sister and my father always had a close connection that I never really could come close to - my dad and I just don't have the same kind of personality. But my mother and I did. It was one of the biggest reasons why I was terrified of turning into her (and still am). So even though it hurt me deeply, even though she said things no mother in her right mind would ever dare to say to their pregnant kid, I soldiered on and kept in contact through my pain and against my family's suggestions.
The last month of my mother's life ushered in a huge change. She was actually showing her house and wanted to move - this time for real. Though she wouldn't tell me where she wanted to actually go, which caused some concerns. At first, her communications with me via email tapered - then, the phone started ringing again. I hadn't been able to speak on the phone with my mother in almost two years - and I used to call her every day. Every day. Think about that. Suddenly I could keep her on the phone for 15 minutes, then 30, then 45. I only got hung up on once, and then they started getting better. It was like my mom was coming out of the fog, and the terrible "Mr. Hyde" that I had to walk on eggshells to avoid was disappearing.
But then it took another turn, and went from bad to worse, but in an entirely different sense. My mother apologized to me for what she had said. Said she was "horrified" by what she had said to me, my sister, her sister, and about us all... I told her that I appreciated her apology and I would always love her. We were making up for lost time, and I was sharing more things about my pregnancy. Was trying to plan a time for her to come and meet the baby. Was making plans for a future that would never manifest.
The last week of her life was terrifying. She called me the day I brought my baby home from the hospital to tell me she thought she needed to be institutionalized. She said she wanted to give me power of attorney and gave me the contact information for her lawyer (an old family friend, one of the many who told me to distance myself, and I did not obey). She said she had a plan for getting treatment and we needed to sell the house and put her in a safer place. Wanted me to plan for where her pets would go if she needed emergency treatment. Then she started hinting that she knew something was terribly wrong with her brain.
Mom taught me over many years that mental illness was nothing to be ashamed of, that it was just as real and just as valid as cancer, and should be treated. She took Prozac and self medicated with marijuana. My sister had to take St. John's Wort growing up, and my depression was so mild in comparison that it was largely ignored. As an adult, I have had my ups and downs, and chose to get treatment and never regretted that. But suddenly mom was very against the allegation that she had a mental illness, particularly over the time frame where there was this "personality change" - it was offensive to her to make the suggestion.
But when she called me that last week, she was insistent that something was wrong. She told me she had a diagnosis - Adjustment Disorder. Sounds about right - and might even be a further manifestation of Borderline Personality Disorder, which I am convinced my mother had. I always felt she had that, though I didn't know its name until about 7 years ago. She fit the bill. Monday before she died, she was lost not far from her home. I called her a tow truck because her car broke down. 30 minutes later, she called and said I needed to call her an ambulance. I talked her down, the tow truck arrived, and she made it home. Seemed all the better for it. I told her I was working on a home for the dogs - and I called my father. I didn't want to get him involved, but I had to.
That Monday night she and I spoke on the phone for a long time ... almost two hours. It was during this phone call that she made the first even remotely suggestive hints that she was feeling suicidal. It wasn't even something that she said - it was more a feeling that I had. She was talking about being a burden to the family, and how she felt that people who were getting progressively worse had a duty to die to help their loved ones. I reiterated that she was worth taking care of and that it was my job to do so - that how she felt about me as her daughter and how she wanted to take care of me, was how I felt about taking care of her. I suggested to Steve that she was sounding "awfully suicidal, and it's scaring me." He asked if she had any outright threats or suggestions - and I said no.
I asked her to write down affirmations that she was "worth taking care of" daily, in the same way I do on my Positivity Blog. She said she would do it. She kept mentioning that she had a doctor's appointment on Thursday and I said I wanted her to discuss all these concerns with her doctor and definitely get evaluated for more mental stuff, if it was due to medication or something else (while she did not tell me that she stopped taking marijuana edibles, she did tell her cousin this, and I worry that the withdrawal had as much of a negative effect as taking the drugs did. We'll never know).
The next day, Tuesday, she called me three times in an hour, I was getting my daughter ready for her first check up and we were already late and I had gotten no sleep. She said I needed to rehome the dogs "today." I couldn't process what she was saying and asked my sister to call her and help. No answer. She called about an hour later and said she was better and things were fine. I should have probed more.
Wednesday was the last time I spoke with mom. She called and asked me outright if I thought she had Borderline. I said, it's possible. But now that she was apologizing and being self-aware, that negated that suggestion. I told her that I was worried about her because she believed she was very sick, and gave me a reason to worry as well. I didn't ask her what gave her that impression. She kept saying that "it isn't curable, there is no treatment," and I said if she had a Personality Disorder that she did not need to be fixed - that it was more a characteristic of her personality if she was nitpicky (yet) and overly sensitive (yes). She was a Cancer sun and a Cancer moon - combination rife with over-emotion. I told her that I loved her, that she didn't need to be fixed. I kept saying that. I said I wanted her to get evaluated for memory issues and we would develop a plan. That there was no "right answer" here. That we would get her help and it would be alright.
She said her realtor was on the other line. I told her I loved her. And that was the end.
Thursday I got a box in the mail from my mom - the only thing I'd received in over a year. No birthday gift or card last year, nothing at Christmas, nothing when I announced my pregnancy. This box had our family photo albums and my baby things. A couple of dresses that she kept saying she was going to send to me as well as some random clothing from her closet. Shoes from when I was a kid.
Heartache and tears in a box, essentially.
I called after opening it, while sobbing openly on my way to get the rest of the mail (baby blues makes you cry at everything) and she didn't answer the phone. I didn't know if she was at her appointment or not. But I got no answer. I had a feeling I should have called a welfare check on her right then and there. But I didn't. And now I know she died on Thursday. I'm too scared to ask if they have any idea what time. If there was a chance that she heard the phone ring and chose not to answer. Or worse - if she could hear it while she was dying and couldn't answer me.
I am forever haunted by these thoughts. I can't stop thinking about it. It's all I can do to just get through my day without breaking down. I have a 3 1/2 week old daughter to take care of and I can't focus on a damn thing. I can't even focus on my precious girl. I hate mom for doing this to me when she did, just after my baby was born and three days before Mothers' Day. Way to fucking ruin it, Mom. Half the family thinks you did it on purpose as a final "fuck you" directly to me. But I know that it wasn't the case, I KNOW that it wasn't the case. I know you thought you were helping me. I know you thought it was best to do something while you felt you had the control to do so. But I didn't get to say goodbye. My daughter never got to meet you. And now she's starting to look like you and I can't keep it together. It's robbing her of real time and connection with me while I am still in "shock" and "denial" phases of this.
My sister is going to Colorado, as I am still in California and can't very well leave with an infant at home right now - either for me or for her or my husband. It just wouldn't work. But she is going to be dealing with her house and home. She is going through her closet, through her shed, deciding what to keep and how the hell we'll keep it. My dad is suggesting he move into her house and keep the dogs - and I can't let him live there. I couldn't visit him knowing that my mother died there. And I wouldn't be willing to deal with the haunting that would surely follow by allowing him to do it when I know how she felt about him in the end, haha.
I am mad that I can't be there. I was the one who was so insistent for the past two years that she was sick, no one believed me, my sister didn't even believe me when I told her that last week that something was very wrong and she wasn't just trying to take attention away from me and the baby. And now I can't help her when she really needs me to - I can't be there to put her things away, to make sure her ashes are spread with our dog Lucky's fur, or with my deceased sister's hair. I know more details about her passing from the detective than I want to know. And they haunt me. All these things just terrify me and won't go away. I am so mad that I can't be there to go through her closet and her bookshelf, even though she was such a heavy smoker that I likely couldn't keep anything anyway. That I have to trust my sister not to ruin anything or trash things I would otherwise keep.
I am so angry. I am so angry that I can't just do this one last thing for her. I can't even be there for her fucking memorial because I live too far away. It's just torture and it isn't fair. It isn't fair!
I feel guilty for feeling like she sounded suicidal on Monday, when I had never heard her like that before. But how was I supposed to know she was even capable of such a thing? Or had thought about it for more than a few days? I trusted her when she said she was going to the doctor. Everything was riding on that doctor's appointment. And I know she didn't go - her car, the one I called the tow for on Monday, was still in the shop on Friday when the cops came to my door. The bill was paid - and she had no intention of picking it up.
My mother always said it was cruel to have children too close together because then your kids don't feel like they got "enough of mom" before the next one came to take their place on the lap. She was very adamant about this. You have to give your kids a chance to feel like they got enough of mom. They have to be ready to be done with her before welcoming more babies.
I miss you, mom. I need you. I wasn't done with you yet.
So now what ... now I am still waiting for my MRI to evaluate my disease. I am having MS hugs again. My eyesight has gotten worse, confirmed yesterday, so new glasses it is. I am changing my hair on Saturday because I have to be in control of something - and my hair usually gets beat up when I feel like this. I don't know how to give my baby more of my heart because it feels so torn. I am so distracted. I feel like I'm robbing my daughter of my focus and attention because I can't stop thinking about this. How can I? I spent 28 years of my life in an abusive relationship with my mother - if I could turn it off, and go "no contact," even forced no contact like this, I would have fucking done it. She's gone, and I still feel the guilt, and still feel lost.
Now the few friends who know that she passed occasionally ask me how I'm doing. I want to be diplomatic and not sound too pathetic. I say I am "surviving," "doing ok," can't bring myself to say my usual response of "hanging in there" because it feels like a goddamned trigger. Which it is. Everything around me feels like a trigger. I thought my friend getting shot in the back of the head was the worst trauma I could experience - I was wrong, this is, the only thing worse than this is if something happens to my kid.
FUCK.
I don't want to be diplomatic about it more than I have to be, but it feels rude to tell people, "Oh, you know, my mother killed herself. And I have to go back to work in a week because I'm fucking broke and because my daughter was 10 days overdue that means I only got 4 weeks with her, so I am far from being ready. Oh, and my chronic disease is making me feel like my stomach is being turned inside out every few hours. So, you know, I kinda feel like dying, because I can't handle all my responsibilities." This was supposed to be a break that would allow me to focus on my kid and myself and healing. And instead, I'm having to mix bereavement, distance estate finances, struggle to actually communicate with my sister because there is obvious tension, etc etc etc., all with maternity.
The cruel part is my sister is taking care of this, and it's appropriate because she is the older one of us. But mom asked me to be her power of attorney. I feel like I'm being robbed of these responsibilities. It isn't my sister's fault. She didn't do anything wrong. I know she is stepping up now because she didn't when I kept asking her to while mom was living. And I know she is feeling guilty and won't talk to me about it. But I hate that I had to tell my sister, harshly, that she couldn't do this to me. I had to explicitly tell my own sister that if she commits suicide, I would never forgive her. How fucked up is this??
Wake me when this is all over.
My mother killed herself on May 5th of this year, just days after my daughter was born. I will never be able to forget the way my heart sank when I answered the knocking on my door to find two police officers and a chaplain. I knew exactly what they were going to say, but I didn't want to hear it. I was too afraid to admit to myself that I already knew what was going on; I had suspected it since the day before, when I called her, and received no answer.
My mom and I had a strained relationship over the past ~18 months or so, mostly because she was experiencing a personality change. I believe in my heart that she was suffering from early dementia or Alzheimer's. She was 62 years old. It was too early for that bullshit, but it was happening before my eyes. My mother, a master typist and pianist, was writing me hundreds (and yes, literally hundreds) of emails at least weekly, many of which were frighteningly banged out on her keyboard in all caps.
I reached out to family and her friends, begging, pleading for help. Clearly, something was very wrong. Many of them agreed, but didn't know what to do, and when I became pregnant they became all the more insistent that I distance myself from her - and when I lost vision in my eye in December because of an MS flare, they were even more assertive in their recommendations. I couldn't do it. My sister and my father always had a close connection that I never really could come close to - my dad and I just don't have the same kind of personality. But my mother and I did. It was one of the biggest reasons why I was terrified of turning into her (and still am). So even though it hurt me deeply, even though she said things no mother in her right mind would ever dare to say to their pregnant kid, I soldiered on and kept in contact through my pain and against my family's suggestions.
The last month of my mother's life ushered in a huge change. She was actually showing her house and wanted to move - this time for real. Though she wouldn't tell me where she wanted to actually go, which caused some concerns. At first, her communications with me via email tapered - then, the phone started ringing again. I hadn't been able to speak on the phone with my mother in almost two years - and I used to call her every day. Every day. Think about that. Suddenly I could keep her on the phone for 15 minutes, then 30, then 45. I only got hung up on once, and then they started getting better. It was like my mom was coming out of the fog, and the terrible "Mr. Hyde" that I had to walk on eggshells to avoid was disappearing.
But then it took another turn, and went from bad to worse, but in an entirely different sense. My mother apologized to me for what she had said. Said she was "horrified" by what she had said to me, my sister, her sister, and about us all... I told her that I appreciated her apology and I would always love her. We were making up for lost time, and I was sharing more things about my pregnancy. Was trying to plan a time for her to come and meet the baby. Was making plans for a future that would never manifest.
The last week of her life was terrifying. She called me the day I brought my baby home from the hospital to tell me she thought she needed to be institutionalized. She said she wanted to give me power of attorney and gave me the contact information for her lawyer (an old family friend, one of the many who told me to distance myself, and I did not obey). She said she had a plan for getting treatment and we needed to sell the house and put her in a safer place. Wanted me to plan for where her pets would go if she needed emergency treatment. Then she started hinting that she knew something was terribly wrong with her brain.
Mom taught me over many years that mental illness was nothing to be ashamed of, that it was just as real and just as valid as cancer, and should be treated. She took Prozac and self medicated with marijuana. My sister had to take St. John's Wort growing up, and my depression was so mild in comparison that it was largely ignored. As an adult, I have had my ups and downs, and chose to get treatment and never regretted that. But suddenly mom was very against the allegation that she had a mental illness, particularly over the time frame where there was this "personality change" - it was offensive to her to make the suggestion.
But when she called me that last week, she was insistent that something was wrong. She told me she had a diagnosis - Adjustment Disorder. Sounds about right - and might even be a further manifestation of Borderline Personality Disorder, which I am convinced my mother had. I always felt she had that, though I didn't know its name until about 7 years ago. She fit the bill. Monday before she died, she was lost not far from her home. I called her a tow truck because her car broke down. 30 minutes later, she called and said I needed to call her an ambulance. I talked her down, the tow truck arrived, and she made it home. Seemed all the better for it. I told her I was working on a home for the dogs - and I called my father. I didn't want to get him involved, but I had to.
That Monday night she and I spoke on the phone for a long time ... almost two hours. It was during this phone call that she made the first even remotely suggestive hints that she was feeling suicidal. It wasn't even something that she said - it was more a feeling that I had. She was talking about being a burden to the family, and how she felt that people who were getting progressively worse had a duty to die to help their loved ones. I reiterated that she was worth taking care of and that it was my job to do so - that how she felt about me as her daughter and how she wanted to take care of me, was how I felt about taking care of her. I suggested to Steve that she was sounding "awfully suicidal, and it's scaring me." He asked if she had any outright threats or suggestions - and I said no.
I asked her to write down affirmations that she was "worth taking care of" daily, in the same way I do on my Positivity Blog. She said she would do it. She kept mentioning that she had a doctor's appointment on Thursday and I said I wanted her to discuss all these concerns with her doctor and definitely get evaluated for more mental stuff, if it was due to medication or something else (while she did not tell me that she stopped taking marijuana edibles, she did tell her cousin this, and I worry that the withdrawal had as much of a negative effect as taking the drugs did. We'll never know).
The next day, Tuesday, she called me three times in an hour, I was getting my daughter ready for her first check up and we were already late and I had gotten no sleep. She said I needed to rehome the dogs "today." I couldn't process what she was saying and asked my sister to call her and help. No answer. She called about an hour later and said she was better and things were fine. I should have probed more.
Wednesday was the last time I spoke with mom. She called and asked me outright if I thought she had Borderline. I said, it's possible. But now that she was apologizing and being self-aware, that negated that suggestion. I told her that I was worried about her because she believed she was very sick, and gave me a reason to worry as well. I didn't ask her what gave her that impression. She kept saying that "it isn't curable, there is no treatment," and I said if she had a Personality Disorder that she did not need to be fixed - that it was more a characteristic of her personality if she was nitpicky (yet) and overly sensitive (yes). She was a Cancer sun and a Cancer moon - combination rife with over-emotion. I told her that I loved her, that she didn't need to be fixed. I kept saying that. I said I wanted her to get evaluated for memory issues and we would develop a plan. That there was no "right answer" here. That we would get her help and it would be alright.
She said her realtor was on the other line. I told her I loved her. And that was the end.
Thursday I got a box in the mail from my mom - the only thing I'd received in over a year. No birthday gift or card last year, nothing at Christmas, nothing when I announced my pregnancy. This box had our family photo albums and my baby things. A couple of dresses that she kept saying she was going to send to me as well as some random clothing from her closet. Shoes from when I was a kid.
Heartache and tears in a box, essentially.
I called after opening it, while sobbing openly on my way to get the rest of the mail (baby blues makes you cry at everything) and she didn't answer the phone. I didn't know if she was at her appointment or not. But I got no answer. I had a feeling I should have called a welfare check on her right then and there. But I didn't. And now I know she died on Thursday. I'm too scared to ask if they have any idea what time. If there was a chance that she heard the phone ring and chose not to answer. Or worse - if she could hear it while she was dying and couldn't answer me.
I am forever haunted by these thoughts. I can't stop thinking about it. It's all I can do to just get through my day without breaking down. I have a 3 1/2 week old daughter to take care of and I can't focus on a damn thing. I can't even focus on my precious girl. I hate mom for doing this to me when she did, just after my baby was born and three days before Mothers' Day. Way to fucking ruin it, Mom. Half the family thinks you did it on purpose as a final "fuck you" directly to me. But I know that it wasn't the case, I KNOW that it wasn't the case. I know you thought you were helping me. I know you thought it was best to do something while you felt you had the control to do so. But I didn't get to say goodbye. My daughter never got to meet you. And now she's starting to look like you and I can't keep it together. It's robbing her of real time and connection with me while I am still in "shock" and "denial" phases of this.
My sister is going to Colorado, as I am still in California and can't very well leave with an infant at home right now - either for me or for her or my husband. It just wouldn't work. But she is going to be dealing with her house and home. She is going through her closet, through her shed, deciding what to keep and how the hell we'll keep it. My dad is suggesting he move into her house and keep the dogs - and I can't let him live there. I couldn't visit him knowing that my mother died there. And I wouldn't be willing to deal with the haunting that would surely follow by allowing him to do it when I know how she felt about him in the end, haha.
I am mad that I can't be there. I was the one who was so insistent for the past two years that she was sick, no one believed me, my sister didn't even believe me when I told her that last week that something was very wrong and she wasn't just trying to take attention away from me and the baby. And now I can't help her when she really needs me to - I can't be there to put her things away, to make sure her ashes are spread with our dog Lucky's fur, or with my deceased sister's hair. I know more details about her passing from the detective than I want to know. And they haunt me. All these things just terrify me and won't go away. I am so mad that I can't be there to go through her closet and her bookshelf, even though she was such a heavy smoker that I likely couldn't keep anything anyway. That I have to trust my sister not to ruin anything or trash things I would otherwise keep.
I am so angry. I am so angry that I can't just do this one last thing for her. I can't even be there for her fucking memorial because I live too far away. It's just torture and it isn't fair. It isn't fair!
I feel guilty for feeling like she sounded suicidal on Monday, when I had never heard her like that before. But how was I supposed to know she was even capable of such a thing? Or had thought about it for more than a few days? I trusted her when she said she was going to the doctor. Everything was riding on that doctor's appointment. And I know she didn't go - her car, the one I called the tow for on Monday, was still in the shop on Friday when the cops came to my door. The bill was paid - and she had no intention of picking it up.
My mother always said it was cruel to have children too close together because then your kids don't feel like they got "enough of mom" before the next one came to take their place on the lap. She was very adamant about this. You have to give your kids a chance to feel like they got enough of mom. They have to be ready to be done with her before welcoming more babies.
I miss you, mom. I need you. I wasn't done with you yet.
So now what ... now I am still waiting for my MRI to evaluate my disease. I am having MS hugs again. My eyesight has gotten worse, confirmed yesterday, so new glasses it is. I am changing my hair on Saturday because I have to be in control of something - and my hair usually gets beat up when I feel like this. I don't know how to give my baby more of my heart because it feels so torn. I am so distracted. I feel like I'm robbing my daughter of my focus and attention because I can't stop thinking about this. How can I? I spent 28 years of my life in an abusive relationship with my mother - if I could turn it off, and go "no contact," even forced no contact like this, I would have fucking done it. She's gone, and I still feel the guilt, and still feel lost.
Now the few friends who know that she passed occasionally ask me how I'm doing. I want to be diplomatic and not sound too pathetic. I say I am "surviving," "doing ok," can't bring myself to say my usual response of "hanging in there" because it feels like a goddamned trigger. Which it is. Everything around me feels like a trigger. I thought my friend getting shot in the back of the head was the worst trauma I could experience - I was wrong, this is, the only thing worse than this is if something happens to my kid.
FUCK.
I don't want to be diplomatic about it more than I have to be, but it feels rude to tell people, "Oh, you know, my mother killed herself. And I have to go back to work in a week because I'm fucking broke and because my daughter was 10 days overdue that means I only got 4 weeks with her, so I am far from being ready. Oh, and my chronic disease is making me feel like my stomach is being turned inside out every few hours. So, you know, I kinda feel like dying, because I can't handle all my responsibilities." This was supposed to be a break that would allow me to focus on my kid and myself and healing. And instead, I'm having to mix bereavement, distance estate finances, struggle to actually communicate with my sister because there is obvious tension, etc etc etc., all with maternity.
The cruel part is my sister is taking care of this, and it's appropriate because she is the older one of us. But mom asked me to be her power of attorney. I feel like I'm being robbed of these responsibilities. It isn't my sister's fault. She didn't do anything wrong. I know she is stepping up now because she didn't when I kept asking her to while mom was living. And I know she is feeling guilty and won't talk to me about it. But I hate that I had to tell my sister, harshly, that she couldn't do this to me. I had to explicitly tell my own sister that if she commits suicide, I would never forgive her. How fucked up is this??
Wake me when this is all over.
Saturday, March 19, 2016
The Power of ... Empowerment
My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related. While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
This book is called, "The Power of TED," and it reads like a novel instead of a self-help. It's a physically small book, but one that has already hit me deeply.
I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word. I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day. Not that. I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as "good day" in the mix.
I know this makes me sound like a bad guy, but let me explain further.
I am fully aware, absolutely, that MS is a constant companion of those who struggle with it. You can't make the scars in your brain go away any more than you can make stretch marks disappear. They're always there, even if they are less visible. They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel. But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.
This book has reminded me of a principle that I used to recall daily. Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones. It is an ugly place to put oneself. And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves. And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.
For example, in the case of my own MS. I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see. I learned today that I get carsick more than I used to because of it. It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks! It affects my ability to see details and color accurately. I cannot read well on a screen, troublesome for a person with two novels in the works. It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather. It would be easy for me to stop creating altogether. It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.
Yet, I choose daily not to be a victim of my circumstance.
Circumstances don't have personalities. They cannot victimize you personally. I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me." These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily." I get that, I truly do. I could go off on a laundry list of all the things that my MS has done to piss me off just today. But I won't, because I would be giving it permission to take over my day if I did that. I would be giving it the power. Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.
I have a friend who lost her husband last year. Even before this happened, she was somewhat of a classic "Debbie Downer." What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much. She had no tolerance for disagreement or the unexpected. I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long. She responded, "Yeah, until someone throws their hearing aid at you."
That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily. When her husband did pass away, these same traits got all the more worse. I exercised patience with her as much as I could. We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep? Easy, I don't sleep anymore. Losing interest in things you once loved? Of course, I'm alone, what's there to look forward to." This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better? Every encouraging word I offered was countered by a dramatic declaration.
I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem. It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue. This isn't something I express in how I act around others, but only in how I critique myself and my projects. When I mentioned it to this coworker, she said, "Mine would be blank." This is another choice. She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.
People have a tendency to perform how you expect them to perform. Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.
We make choices daily, to be victims of our circumstance or creators of the positive. I am choosing to be a creator of the positive. I am choosing to have more control over how I feel about my MS than to let it take control of me. I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me. But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.
I hope my rambling made sense, and that I don't seem like too much of a devil's advocate. But the path to healing isn't easy, it isn't pleasant. We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time. May you all choose the path of creation, not victimization.
Love, MSloan
Sunday, February 14, 2016
Keeping A Record
I have been on a path of healing.
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. Love to all,
MSloan
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. Love to all,
MSloan
Wednesday, January 6, 2016
ChatMS - 1/4/2016
First ChatMS of the year! Please feel free to copy/paste the questions to your own blog, and remember to keep things moving and the conversation going! Happy New Year, everyone!
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?
This is absolutely true! There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for. We are a minority. And science will ignore us if we don't make a stand. I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.
2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.?
Definitely online doing these twitter chats. I like to think there are folks that read my blog... or am I writing to no one?? oOo....
3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?
Hahahaha, what support system? I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable. Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject. I always end up making THEM feel better when I talk about the everyday struggle. So I don't really talk about it. When I have a flare it makes me feel very lonely. The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist. I didn't want to tell anyone and the manager spilled the beans. Would have lied and said it was a baby thing but I don't want to curse her along the way. Can you tell this is a sore spot for me?
4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?
North Bay of California, represent!!
5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?
I would love to have an MS penpal - - but I have to be honest. I see an awful lot of MS folks who complain on a daily basis. Do I have daily struggles? Yeah, but if I focus on it as being an everyday struggle, it will be. When I have a good day, it is a great day! So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me. I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.' When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3. We are not pitiful, don't make us out to be!
6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?
I would be ... as long as it wasn't too disruptive to work! This will be more difficult with a baby this year though.
7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?
I think MS connections are crucial to discussing depression and other struggles. It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything!
8) What could be done to further help MSers make more connections, and grow their support system?
The biggest thing that would help MSers make connections would be to END THE ADA STIGMA. I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA. It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well. It is no longer a death sentence and there are so many treatments to help give sufferers a normal life. I want to talk about it, we all should talk about it, stop the stigma!!
Love to all!
MSloan
Friday, January 1, 2016
Twlight of Diagnosis
Today I watched a documentary about environmental toxins. Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia. Some may remember every last detail that the doctor said, but can't remember how they got home. Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.
Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this. I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.
In 2010, when things started falling apart, I felt like a walking disaster. I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic. I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives. I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.
Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end. We sat in class for the ENTIRE grueling 2.5 hours. And when I got home, I was in tears. What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it. Huh.
Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two. I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience. I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me. I had to be rescued at the grocery store less than a mile away from my home.
I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with. My sex drive absolutely disappeared. I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event. I even thought about writing her to tell her I was sick, but didn't know why.
I remember seeing the movie "Inception" with my good friend Tracey. I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything. I tried to drink only water. But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband. At the end of the movie, I couldn't get up. I had to ask Tracey to sit with me until I could get up without falling over. I was mortified. And I remember being just as freaked out at the movie theatre as I was at the grocery store.
But I was convinced things were better when at the end of May, I felt better in general. In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain. I don't think that was necessarily related to the MS - but it was notable just the same. Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless. I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.
Until I went to work one day in November of 2013. I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard. I remember calling my husband and saying, "not again, I can't do this again." It seemed to quell after a few days but never really went away. My depression spiked for a few weeks, and then subsided. I felt better than I had in a long time. I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference. At the conference, I was hit with an anxiety attack so bad that I cried for two straight days. When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.
Now I know those cramps were MS hugs, and my flare up began in November.
Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot. This bilateral numbness was what tipped me off to it being an upper motor neuron problem. I casually mentioned it to a couple of coworkers, with absolutely no response. I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness. She didn't think it was MS. My sister thought I was kidding. I think my husband was hoping it was temporary and would go away in a day or two. But I knew better. It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.
She looked at me with an expression of pity and knowing. And that's when my boss walked in. I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't. She pulled me into the kitchen of the office and said, "You can't feel both your legs? You know what this means, right? Where the problem is?" I nodded. And I said a silent prayer. I told her I was going to go to the hospital when I heard back from the neurologist I called.
The next morning in the shower, I nearly passed out, and called in to work. My boss knew why, so I tried not to be too anxious. I was facing the busiest month, and most important, of my graduate career. I had job interviews and/or conferences every week in March, all of them out of state. I had a lot on the line. So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in. From there, all I was hoping was that I wouldn't leave without an answer.
When you go to the ER, you always hope it will go quickly. I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM. It was virtually empty, and I was seen immediately. I was on my period and super embarrassed to take off my clothes. The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip. I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch! The bottom of my foot felt that sharp point, and I realized just how bad it was. Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently. It was such a blur. Sometime after that, my sister arrived. I gave a urine sample. I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine. I had a very cold and uncomfortable ultrasound to check for DVT.
I returned to the room, and my husband had arrived. My sister was back, with a box of Good N' Plenty, my only food of the day. She knows me well :). And we waited. We waited for an unknown number of hours, before the cute doctor came back. I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results. I have to say it with every vestibular test and I always know the outcome at the end. Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results. He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers. One was Guillane Barre. My ultrasound was normal. Something about my blood tests being relatively normal, but indicating some kind of inflammation. The MRI came last. He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.
I nodded, knowingly. My husband apparently thought I had a brain tumor, but this was good news in comparison. I don't think my sister quite understood this. I couldn't look at either of them and just looked at the doctor. "So, what's next?" He said I needed a spinal tap to help confirm. I asked if I could fly in a week, he said no, so I had to move my job interview. He said they were going to come in and give me some steroids. That's what I remember of the actual conversation. I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary. I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down. They wanted me flat to keep me from getting a spinal headache. Then they came in with the Solu-Medrol. They didn't tell me one side effect. It was awful. I remember going home after and driving my car home. I remember getting ice cream with my sister, who was clearly distraught. I don't know why it took so long for my husband to get home, but it did. Maybe he went to the grocery store. Maybe he picked up dessert, but I don't think so. I remember giving my sister the lion painting and trying not to cry. In fact, I didn't. I don't think I cried about my diagnosis until weeks later, during my second round of steroids.
I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall. I hope that this encourages you to remember your own diagnosis stories. It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.
It is now 2016. I have persevered thus far, and have a long way to go, and intend to love every minute that I can. May you all do the same!
MSloan
Saturday, December 5, 2015
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
Monday, November 16, 2015
Chat MS - 11/16/2015
Hey all!
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway! Feel free to copy/paste the questions to put up on your blog. Remember to keep the conversation going!
I'll put in a few rudimentary answers where I can, but again, I don't drink. Love to all!
Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?
I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)
Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?
It's odd, but I have! Just as small as a dose of Nyquil and my whole body feels funny. So I bet it's good that I don't drink otherwise :)
Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?
DMD means 'disease modifying drug.' I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.
Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?
Not even close - my first question was "can I still fly to my job interview next week?" The answer was no - it was a busy month and my life was very much disrupted!
Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does.
No comment here
Q6 - Have you found any benefits to drinking moderately when you have MS?
No comment here
Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?
Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.
Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.
I have never heard this, how interesting! My husband laughed his butt off when I told him this and showed him the attached article. I have heard good things about marijuana tinctures and MS but have not explored it myself. At least, not yet!!
Love all! - MSloan
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
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!
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
Monday, September 1, 2014
Updating on the Times -
Funny how when things are going well, you are less likely to update on things like that. But I think it is even more important than when reporting poor condition!
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
I have made a huge change in my life in the midst of being diagnosed with MS. I have moved cross-county with my husband and three kitties. I have started an anti-depressant and the MS medication, Gilenya. My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now. I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit. We shall see how that pans out.
I'm giving an update on what it's like to get your scripts! When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you. If you're like me, you'll be lucky and have no copay. This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it. So heaven forbid you are ever not covered! But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks. Come on, people.
Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order. This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things! So there's that. But it's doing it's job (I think) so I can't really complain!
I'm so happy I took the leap to an anti-depressant. We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug. I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with. So if you're suffering, speak out! And do something, even if you think your problem is mild. If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!
Love to all! And a good song I posted, hope you go listen.
https://soundcloud.com/margo_aries/trouble-cat-stevens-cover
Thursday, June 19, 2014
Relocated
Hello all! I know it has been a while since I posted, but that is a good thing for sure.
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
The last time I wrote, I was doing some art therapy. I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually. But right now, I'm just excited to feel well enough to create again.
I made the big move, and am now in California, very far away from the place I called 'home' my whole life. I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.
On the MS front, I have been on Gilenya for over a month now. So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to. If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly. I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all. Which is AWESOME.
I started work this week, and I am so happy that I ended up where I did. Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again. I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.
So, there you go, world. Right now, that's where the MS train lies. I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent. But I will prevail - and so will you! :)
Saturday, May 17, 2014
Results of Art Therapy, 5/18/14
This is the effort I put forth this evening since my last post. Nothing compared to my lion, but he'll have to do. Meet my "Shere."
Love all,
Sloan
Love all,
Sloan
Sunday, April 13, 2014
Lhermitte's Sign
Cool! Being a scientist can make some of the more interesting parts of MS exciting, despite how disconcerting it can feel.
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Thursday, April 10, 2014
Just Keep Swimming
Okay, today I am trying to have a better attitude.
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Wednesday, April 2, 2014
The Swing of Things
In July, my husband and I bought 20 passes to the local rec center to work out. We are not big workout people, by any means. I am a fairly skinny person, so cardio work just makes me feel even more small - I try some weight training, but let's face it, I'm much more of a yoga person anyway. My husband, on the other hand, is a bit larger (no thanks to my cooking) and has things like diabetes running in his family, so the need is much greater for him to make the effort. He is a naturally stocky person, so he bulks up like a Viking quite nicely when he puts in a little time - win/win, right?
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
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