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.
Wednesday, May 25, 2016
Friday, May 6, 2016
Stresses.
Did you know I had a baby six days ago?
She was born at 4:04 AM on the 30th of April, after 28 long, hard hours of labor. She is beautiful. She's absolutely perfect. Not a huge fusser, my husband is being amazing, my breast milk has come in and she eats very well (an extreme amount today, in fact). I am able to pump and store before going back on MS medications. Nevertheless, labor was intense, and I am still in a fair amount of pain. I'm still bleeding. I worry about what the stress of all this will do to my MS.
Did you know my mother killed herself yesterday?
I can't even begin to describe my despair.
Love to all,
MSloan
She was born at 4:04 AM on the 30th of April, after 28 long, hard hours of labor. She is beautiful. She's absolutely perfect. Not a huge fusser, my husband is being amazing, my breast milk has come in and she eats very well (an extreme amount today, in fact). I am able to pump and store before going back on MS medications. Nevertheless, labor was intense, and I am still in a fair amount of pain. I'm still bleeding. I worry about what the stress of all this will do to my MS.
Did you know my mother killed herself yesterday?
I can't even begin to describe my despair.
Love to all,
MSloan
Monday, April 4, 2016
ChatMS 4/4/2016
Hey all!
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now. Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now. Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
Saturday, April 2, 2016
At The Bitter End -
Happy Saturday, Everyone!
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
Wednesday, March 30, 2016
ChatMS 3/28/2016
ChatMS this week was all about cognitive issues. I'm a few days late, but I'm still trying to get the word out there!
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
Saturday, March 26, 2016
Finally.... A Plan!
I finally got through to my neurologist!
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options. He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time. I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.
Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no. It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further. While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:
His name is Dufresne, and I painted him on Sunday. So I haven't completely lost my ability to make good art, and that's comforting. It definitely wasn't the same, and painting on the black background certainly made it easier. I'll have to re-teach myself to paint on light. Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it. I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours. I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!
Well, here's hoping that I won't have any active lesions when we take a look in April/May. Fingers crossed!
Love, MSloan
Monday, March 21, 2016
ChatMS 3/21/2016
Hey all!
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
I have less than a month until this baby's due - whew!! I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast. I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly. I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine.
We'll be okay.
This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed! My blog has chronicled this well, but I'm happy to answer these questions. I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!
Q1 – When did you get the Multiple Sclerosis diagnosis? At what age?
February 28, 2014. I was 24 years old, but had been symptomatic since late 2009, early 2010. Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot. It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.
Q2 – Were you aware of what MS was at that time?
I knew more than most. I see MS frequently at my job, and just before this happened, I saw an influx of MS patients. I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to. It frequently flared at that time of year, which is odd. The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!" And so I ignored what I was going through until I couldn't anymore.
A couple months before my D-Day, we got a new front office person at my work. She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri). My heart skipped a beat when she told us she had MS - I felt like it was yet another sign. She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.
Q3 – Where were you when you got diagnosed? Was anyone with you?
It was a trip to the ER that did it. On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch. I called the two most important people in my life: my husband and my sister. I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so! They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.
Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?
"Great, I knew that, what do we do about it?"
Q5 – What were the reactions of your family members and/or friends?
A lot of silence. The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up. A couple well-meaning friends started offering advice about my diet, exercise routine, medications. My husband was so thankful it wasn't a brain tumor that I don't think it sunk in. My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing. I know she was very uncomfortable about it and didn't really know what to do or say. It wasn't long before she started in with the diet thing, too. I'm glad that phase is pretty much over!
Q6 – What did you do to learn more about MS after you were diagnosed?
You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from. Which is odd. I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk." That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality. Yes, it's a possibility. But it's also possible that I will be hit by a car tomorrow. Time will tell, I guess.
I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease. I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.
Q7 - If you could go back and tell yourself one thing on your D-day what would that be?
"Reduce your stress, keep this to yourself, and know that things can always get worse. This isn't the end of the world, just the beginning of a new understanding of yourself. You are validated, don't tell others and make a big deal of it - because they won't comfort you. Comfort yourself."
Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?
See above. This truly is the best advice I can give. You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need. So find support with other MSers, not your friends; and do NOT tell prospective employers. A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week). So sad.
Love all! MSloan
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