Well, the flare continues. Bummer!
I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now. From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp." Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.
I did a lot of reading today, as I had to stay home from work. I became very sick yesterday evening. I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep. I woke in the middle of the night and threw up - something I very rarely do. It's been about 3 years since the last time, and even then it was very similar to this. And four years before that, again a similar situation. I hadn't in 15 years before then.
Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?
Over the past seven years, I have had a myriad of intestinal issues. Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea. As someone who very rarely throws up, being nauseated was like torture. No matter how many times I would mention this to doctors, no one seemed to care. Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong. Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.
Oy, to say the least.
Today while researching, I found some information on gastroparesis - and bingo. It matches my symptoms perfectly and explains soooo many of my long lasting issues. So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer. Isn't it strange ho having a reason makes it all so much easier to handle?
Love All,
MSloan
Showing posts with label freaking out. Show all posts
Showing posts with label freaking out. Show all posts
Thursday, July 6, 2017
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, 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
Thursday, November 26, 2015
Chat MS - 11/23/2015
This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Remember to keep the conversation going and have a great Thanksgiving -
Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?
Absolutely. I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.
Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)
This biggest thing is that I have MS at all. People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.' This goes especially with my coworkers and bosses, because having MS makes me an ADA risk. I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant. I have not missed a day of work because of my MS in over 18 months.
I also struggle with telling people that I'm with about the possibility of my fatiguing quickly. I have a relatively svelte figure, am tall and thin, and otherwise look healthy. When I mention that I'm too tired to do something, I get a lot of eye rolls. I look good on the outside, but on the inside, I'm struggling to stay alert. This is really a hard thing to feel good about.
Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?
7 or 8. I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.
Q4 – Are there situations or places you purposely avoid because of your anxiety?
Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it. This happens a lot. It's the most common issue I struggle with when I'm not having an active flare up. I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue. Pain free. I miss those times.
Q5 – Have you discussed social anxiety with your neuro? What did they say?
Nah - it never really came up and I doubt he can do anything about it. Unfortunately social anxiety is not like GAD and isn't really affected by medication.
Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?
Abso-freaking-lutely. All the time. I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help. I have this dream a lot, and it makes me think about it all day long. I worry about my ability to get around. I worry I will have a flare that affects my hands and I won't be able to work. I worry I will be out with friends and will have to stop before they're ready to.
Q7 - What do you feel when you experience social anxiety?
I get quiet and I don't want to talk to anyone at all. I'm not an easy crier but it makes me feel like I am about to flood the room. My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.
Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?
The best thing is to spend time with people who are willing to ask questions. Tell people you don't feel well. But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.
Love to all - MSloan
Thursday, October 22, 2015
And it goes around and around and around -
Well, I have an MRI scheduled for Saturday morning, bright and early.
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
Tuesday, October 20, 2015
Relapse?
Hey all. Today has been an interesting day.
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Thursday, August 27, 2015
My, how things have changed...
It has been a strange last few months.
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
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