My Mother's Eulogy

For the occasion of my mother’s memorial –

...

Before I begin, I must make one thing unequivocally clear:  I love my mother very much.

It’s strange how the tenses of verbs change when someone passes away.  Do you say, “I love them,” or do you say, “I loved them”?  Does it really make a difference?  I suppose, when all is said and done, that’s the ultimate truth about death: they will still be gone tomorrow, so does your love no longer count?

I say “yes,” it does still count, as much as it ever did.  So I mean it when I say it.

I love my mother.  And that’s the most important thing you need to know.

It would be a lie to say we didn’t have our troubles.  I supposed every mother and daughter have them.  My troubles were different from my sister’s troubles, and were different than those had by my mother with her own.  But our bond was terribly special, simply because we were so much alike.

Or, are so much alike.  See, there’s that tense thing again.

My mother was exquisitely talented in many arenas.  She didn’t express all of them simultaneously, so they were easy to miss.  My mother liked to sew.  My mother liked to knit.  She was a painter, and once upon a time, liked to quill paper.  If you don’t know what quilling is, you should look it up on Pinterest – one thing I think mom would have loved if she had the wherewithal to find that website.  I mean, can you imagine the pins she would have on “lamps” alone?

Mom was a pianist.  I would say that was a primary identity for her.  She was a musician and she loved being a musician.  If it wasn’t for her own stage fright, I suspect she would have loved playing in great halls and for many people.  Instead she played not-so-quietly in her living room, for her friends, for her family, and often asked me to sing next to her even when I felt ridiculous trying to belt out a Bach that I didn’t know the words to.  It was something we did together.  And it’s something I will likely never do again.

Now that she is gone, I am torn in so many directions. I am torn in complicated guilt and grief for how much time we lost the past two years.  I am torn in gratefulness that I spoke with her every day at the end.  I am torn in relief that she is no longer suffering. I am torn in despair knowing that she is just simply not around anymore - either to laugh with me or cry with me or yell at me in disapproval. I am torn in confusion over what happened and what could have been done. I am torn in desperation to get answers that I know I will never get - and fear that I will.

But there are things I am not torn about.  I know my mother loved me.  And I know that I love her.  I know that my mother felt a karmic quest to create change, especially in our government.  I know my mother was passionate about paying attention to our surroundings and reading the signs of the times, the stars, and within ourselves.  I know my mother would have been horrified to see her situation from the outside looking in.  And I know my mother would be proud of my contemplation to take legal action to the state, on behalf of people suffering from mental illness everywhere, so that we might prevent such things for other families in the future.

That, I know, my mother would support.

I wish I could sing for you one of Barbra Streisand’s classics – but I’m afraid I would turn into a burbling mess.  I have a newborn, so I’m pretty much always a burbling mess anyway... good luck asking me to sing these days.  But I know one thing.  If I were to sing, I would hear my mother harmonizing in the higher register, as she always, always did.  If I were to play piano for you, she would be yelling out the notes from another room – even if the names she said weren’t necessarily correct, she could come out to the piano and hit the note with her hand like Marian from ‘The Music Man’ in that first scene.

Well, look at me now, I am definitely my mother’s daughter – I have written 750 words and I feel like I’m just getting started. 

But for the sake of everyone, I will quote Inigo Montoya:

“Let me explain.  No, there is too much.  Let me sum up.”

We cannot kid ourselves that she was all she could be at the end, because she wasn’t.  The woman I will remember as my mother was vibrant, exciting, funny, and tender hearted.  She was more trusting than she was suspicious.  She answered the phone with a Julie Andrews-like intonation.  She liked to quote movies, as I often love to do, as does my sister.  Mom loved going to the movies, and she had a sweet tooth just like me.  She and I loved to sing in the car together.  She enjoyed the mixtapes I put together for her just as much as I enjoyed making them – most of them opening on a highly inappropriate song for a 60-something year old woman to be singing (I think the last CD I made had “Blurred Lines” as the opening number and she loved it).  This is the mom that I want to, and will, remember.

In short, I love you, Mom.

That’s all you need to know.

Letter to the Governor -

I wrote a letter to the Governor of Colorado.

I hope my sister approves and I will send it along.  If I cannot save my mother's life, maybe I can help change things so that someone else's life can be saved.

Love to all, Margo.
....

Dear Governor Hickenlooper,

            My name is Dr. (Margo Sloan), an audiologist currently living in California, and I am writing you today to address the dire need of legislative change in regards to mental health care in Colorado.  I am a Colorado native, as are the other members of my family: my father, (name retracted); my sister, (name retracted); and my mother, Kathy (retracted), who recently committed suicide.

            In light of this, I found it imperative to alert you to the situation surrounding my mother’s passing, in the hopes that it can influence positive change in how Colorado views and regulates mental health care, so that other families can avoid the same fate and despair that my family has.

            In November of 2014, my mother started to act very strange.  While she had a long history of mental illness, and self-regulated her troubles through Prozac and recreational marijuana, her family and friends noticed a drastic change in her behavior.  She became obsessed with the notion that my father, by then her ex-husband, was a dangerous criminal that was stalking her.  Despite all the evidence to the contrary, she could not be persuaded.  It would be difficult to describe her condition as anything other than a personality change: a common symptom of dementia or Alzheimer’s disease.

            I had recently moved to California to pursue a career in Audiology, as such opportunities for employment were less available in my home state.  When I first moved, I spoke on the phone with my mother nearly every day.  But in November, when her condition began to deteriorate, I stopped receiving phone calls and started receiving emails.  They increased in number until I was seeing over 100 messages daily; many if not all of which were speckled with nasty comments, accusations towards my father and her sister, and even name calling.  It was highly unlike my mother to use this type of language, and especially out of character for her to be so irrational as to write such a high volume of messages to all sorts of people on her contact list.  She claimed to be looking for help, but I must be specific in saying that she was never obviously suicidal or threatening to either herself or someone else; Kathy was merely attacking all of us she was sending messages to.

            By the following March, she had started emailing the local police department in Englewood, a fact I only learned by seeing a lone email address amongst a long list of CC’s in one of my mother’s messages.  Officer Mike Fast was very helpful at assisting me in my quest to get my mother help; he claimed to believe something was very wrong with her, that she seemed manic and obsessed with the idea that my father was dangerous, even going so far as to continue repeating a claim that she had been told he was a suspect in a murder case by an officer in Adams county.  I remember laughing at his complaint that he was getting a whole 15 emails daily; I responded that 15 would have been considered a “very light day” on my end of the spectrum.  Less than a week after I spoke with Officer Fast, my mother was taken to Porter Adventist Hospital, after he ordered a welfare check in response to an email that seemed vaguely suicidal.

            When I called Porter Adventist Hospital to find out where my mother was, they refused to give me any information other than confirm that she was in their confidential wing; a side effect of HIPAA regulations that I am very familiar with as I work in the medical field.  However, I was the point of contact for the physicians working with her, and was contacted by her “evaluator” a few hours after her admission.  They asked me about her prescription drug use, of which I knew little, and I repeated the same concerns to them that I did to the officer earlier that week: I believed my mother to be very ill, that she was suffering from delusions, and needed help.  The evaluator agreed that she was manic and possibly bi-polar, a diagnosis I did not agree with but decided it was better to trust the assessment to the physician at her end, and my mother was admitted for 72 hours.  What happened during that time, I will likely never know, as I heard nothing until she was released three days later, back to her home in Englewood where she lived alone.

            As the months went by, I received some messages that suggested the physicians at Porter had diagnosed my mother with psychosis and prescribed medication specifically for that condition, but she refused to take that medication.  She then accused me of altering her medical record – another delusion.  All the while, she occasionally claimed to have a counselor that corroborated that I was a terrible person, and that I had abandoned my mother on purpose, and was abusing her from a distance.  At this point, I was seeking help from all avenues, from family and friends, to colleagues, to counselors, even contacting the police department to see if they had received any more emails from her.  I was desperate to find her help, as I couldn’t do much of anything from my location in California, and she lived alone.

            The answer was clear: Colorado law stated that I could not get my mother admitted to a hospital for mental health care involuntarily unless she was an immediate threat to herself or someone else.  I couldn’t say she was a threat to herself because she never openly threatened suicide, and I couldn’t say she was a threat to someone else because she lived alone.  I could get her institutionalized by court order only if she had more than one 72 hour admittance to a hospital within a three year time frame (Colorado Revised Statute, Article 10, Title 27: Care and Treatment of Mentally Ill, 102.8.5, Gravely Disabled, Header B).

            I became familiar with these laws in December of 2015 after my mother called a welfare check on her sister, who lives in Chicago, in the hopes that she would be accosted by police officers in her area and taken to a hospital as a result.  However, as my aunt is not a threat to herself or someone else by any means, that did not occur.  She was visited by police, was asked a few questions, and they left.  My mother was now using law enforcement to harass her family members.  At this time my aunt called the Englewood police department to report the problem and seek help.  Nothing came of it, despite my mother’s history with them, and Officer Fast’s history of setting up a case file with Arapahoe County Mental Health services.  Because she posed no physical threat, nothing could be done based on Colorado law, despite the growing evidence to her illness.

            In February of 2016, I received a message from my mother that crossed many lines in terms of her abusive words, and I again sought to get her help.  I contacted Arapahoe County Mental Health Services and requested a case worker be sent out to evaluate her on the basis that she might be a victim of “elder self-neglect;” an assertion I felt had validity since several of her messages claimed that she was emaciated and losing weight.  My mother, a master typist and organized businesswoman, was sending emails that were heavily misspelled and disorganized, as if she had been banging on the keyboard in rage.  Their response was that I could call the police department for a welfare check if I felt she was a danger to herself, and that they would decide based on my complaints if she warranted an evaluation.  I never heard back from them.

            By March, I hadn’t been able to have a conversation with my mother in almost 18 months.  She frequently hung up on my calls, left bizarre voicemails on my phone, and the emails got progressively stranger.  My mother claimed that my father was behind a robbery at a downtown pizza parlor and obsessed over the online video of the crime, despite the fact that the obviously very young, mustached man looked nothing like my 60-year-old mutton-chopped dad.  When confronted with recent pictures, she would claim it was “not the face, but the body” that identified him.  It was becoming increasingly clear that her condition, whatever it was, was deteriorating.

            But in late March/early April, something even more strange happened: she got better.  She spoke with me on the phone for a whole 45 minutes before I said the wrong thing and she hung up on me.  We talked more regularly, and the mean emails tapered, then stopped.  She was selling her home and moving to the Springs.  She wanted to know when I wanted her to come out and visit the baby; I was due on April 20^th.  But she didn’t understand why I had not previously invited her out; it was as if she was completely unaware of the things she had said in rage-full typed words for months on end.  Until, one day, she apologized for what she typed.  She said she was, “horrified by her behavior,” but didn’t say what prompted the apology.  I decided to see it as a blessing; maybe she was really getting better.

            On April 30^th, ten days after my labor due date, my daughter was born.  My mother was the first person I called; I was happy that I had not “cut her off” as so many people had suggested I do when her words became painful to read and to hear.  I was glad I did not give up on her, that somewhere in her poisoned mind my mother still existed.  She was teary, but not from happiness; it was evident that she had been up all night crying.  She wouldn’t tell me why.  When I brought my baby home on Sunday, May 1^st, my mother called and told me she thought she needed to be institutionalized.  She wasn’t sure she could be trusted to make decisions, and wanted to give me power of attorney.  On Monday, May 2^nd, my mother called me less than two miles from her home, crying and helpless because her car broke down.  After I called a tow truck, she then claimed she needed an ambulance; an assertion she dropped when the tow truck arrived and she got home.  Tuesday, May 3^rd, she initially called me several times looking for a way to re-home her pets, only to call back and say she was feeling better.  I kept asking her to give me more time to organize the people I knew in Colorado to help her; I begged her to not worry, that we would get her the help she needed.

            It was then that she started sounding vaguely suicidal, something that I had never heard from my mother before.  She was not specific enough to warrant a welfare check; in fact, she said she had a doctor’s appointment that coming Thursday, and would discuss any concerns she had over her mental status at that appointment.  I trusted that she would do so, convinced that she was not capable of harming herself, and certainly not when she was on the phone with me, hearing my newborn coo in the background.  On Wednesday, May 4^th, she called and asked me if I thought she had Borderline Personality Disorder; something I had asserted many years prior in response to a number of nasty exchanges we had.  I assured her that even if that was the case, that she was worth helping.  She regurgitated a few things she had read on the internet about people with the condition, said it was not curable, and reiterated something she had said a few days prior: she thought that people who had incurable mental diseases had a duty to their families not to be a burden.  I said again, “You are not a burden to me, Mom, and we don’t even know if you have something like that,” ever hopeful that she did not really have the Alzheimer’s that I suspected and that instead she was suffering from a hormonal imbalance that we could fix medically.

            We talked about whether or not it was wise for her to move to Colorado Springs, and if she should take her house off the market.  I talked with her about how my new baby had the prettiest eyes and looked just like her.  I told her I loved her.  She said her realtor was on the other line, that she would call me back later.  On Thursday, May 5^th, I received a package in the mail that my mom had sent a few days prior – it was filled with my old baby things, some photo albums, and rather inexplicably, some of my mother’s clothing.  I called, and got no answer; I was not terribly concerned, as she said she had her doctor’s appointment that day, and my sister was in town visiting.  Since I’d spoken with her every day that week, I comforted myself with the thought that she would call.

            Little did I know, my mother let her dogs out in the front yard alone, and left her door propped open.  Her car, still in the shop from the tow truck on Monday, could not take her to the doctor’s appointment she had assured me she was going to.  On Friday, May 6^th, her neighbor discovered her in the basement of her home, after checking to see why the dogs were still outside.  I was notified by my local police, and I cried on my sister’s shoulder, who was just as thankful as I was that we were together.  My mother had committed suicide less than a week after my baby was born, 18 months into the saga of her deteriorating mental illness that I had tried desperately to get her help for, and was constantly told that her indirect threats were not enough to get her the help I knew she needed.

            Do you know when you call organizations for a welfare check on a family member that they ask you if the person in question has a method of which to hurt themselves?  Are you aware that Colorado treats mental illness as something that can only be taken seriously when suicide is directly threatened, and not when the conditions that often precede suicidal ideation or behavior present themselves?  If you look up psychosis online, the symptoms are fairly specific: difficulty concentrating, depressed mood, sleeping too much or not enough, anxiety, suspiciousness, withdrawal from family and friends, delusions, disorganized speech, depression, and suicidal thoughts or actions.  My mother obviously exhibited all of these symptoms except for the very last one.  Should it not have been evident to any medical care team that it was an inevitable symptom that they may not have been seeing?

            My mother was not a violent person.  She was not a gun owner.  She was not a heavy drug user; her vice was cigarettes and marijuana.  Yet in the last few weeks of her life, she spent time on the internet researching ways to commit suicide at home, how to overdose on Prozac and household chemicals.  When one of her methods was unsuccessful, she went back to the search bar and typed in, “now what?” before settling on her fate.  No one, not her friends nor her family, simply did not believe my mother was capable of such a thing; as my sister says, that is why they call it “the unthinkable.”  She was determined to end her life; she left no breadcrumbs to be found, none but the obvious signs that she had quickly and frighteningly gone from zero to sixty in less than a week.  But, was it really just a week, if I had been asking people to help her for almost two years?

            Through all of this, I had been limited by the blind spots that were present because of my distance.  Since she passed, I have learned even more information: that my mother was under the care of several doctors, who echoed my concern.  She saw a counselor relatively regularly, who noticed that she was manic and erratic, but couldn’t put her in an institution because she didn’t come in with evident marks, scars, or self-inflicted wounds.  They wanted her to take anti-psychotic medication, but she refused, and often threatened to leave if doctors challenged her reality.  These people knew she lived alone, and yet they continued to let her leave.  They watched her lose weight but believed her when she said she was eating.  They saw my requests for help; how could they not?  Myself, my sister, her sister, the police department; her name was raised in several places due to the complaints we raised, and yet, my mother deteriorated.

            So my quandary is this: if I could not help her because I was far away, and my only evidence were the words typed out in front of me, that would be an understandable reason why she could get worse.  But after being committed for a 72 hour hold at the hospital, why was there no follow up directly aimed at the possibility of suicide?  If she had a case worker through Arapahoe County, what happened in terms of the follow up for the appointment she missed on the day she took her own life?  If her counselor could see that she was not well, and needed to continue returning for treatment, why  do we insist on not allowing the caretakers of folks like this – family, friends, and medical personnel alike – to make the call that they need help despite their lack of outright suicidal ideation?

            In mental health care in Colorado, why is only evident and imminent suicide deemed the only worthy cause for care?

            Governor Hickenlooper, I implore you to examine the history of why Colorado law is the way it is, and understand that mental illness takes many forms.  Long before my mother committed suicide, she exhibited several obvious and dangerous symptoms that could have warranted her institutionalization in other states.  Colorado’s “Imminent Threat” laws prevent people like my mother from receiving help because it prevents family members, friends, and caregivers like me from seeking help for their loved ones.  Remember the old adage, “crazy people don’t know they’re crazy?”  It is absolutely true; the ones who most desperately need help often do not recognize it until it is too late.  My mother never acknowledged that she was ill until less than a week before she took her own life.  I will be racked with guilt and nightmares of her death for the rest of my life, and all I have to show for my actions are thousands of emails and a log of phone calls, peppered with my cries for help that went unanswered.

Thank you for your time.

"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.

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

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

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

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

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

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

The Power of ... Empowerment

My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related.  While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.

This book is called, "The Power of TED," and it reads like a novel instead of a self-help.  It's a physically small book, but one that has already hit me deeply.

I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word.  I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day.  Not that.  I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as  "good day" in the mix.

I know this makes me sound like a bad guy, but let me explain further.

I am fully aware, absolutely, that MS is a constant companion of those who struggle with it.  You can't make the scars in your brain go away any more than you can make stretch marks disappear.  They're always there, even if they are less visible.  They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel.  But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.

This book has reminded me of a principle that I used to recall daily.  Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones.  It is an ugly place to put oneself.  And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves.  And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.

For example, in the case of my own MS.  I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see.  I learned today that I get carsick more than I used to because of it.  It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks!  It affects my ability to see details and color accurately.  I cannot read well on a screen, troublesome for a person with two novels in the works.  It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather.  It would be easy for me to stop creating altogether.  It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.

Yet, I choose daily not to be a victim of my circumstance.

Circumstances don't have personalities.  They cannot victimize you personally.  I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me."  These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily."  I get that, I truly do.  I could go off on a laundry list of all the things that my MS has done to piss me off just today.  But I won't, because I would be giving it permission to take over my day if I did that.  I would be giving it the power.  Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.

I have a friend who lost her husband last year.  Even before this happened, she was somewhat of a classic "Debbie Downer."  What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much.  She had no tolerance for disagreement or the unexpected.  I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long.  She responded, "Yeah, until someone throws their hearing aid at you."

That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily.  When her husband did pass away, these same traits got all the more worse.  I exercised patience with her as much as I could.  We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep?  Easy, I don't sleep anymore.  Losing interest in things you once loved?  Of course, I'm alone, what's there to look forward to."  This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better?  Every encouraging word I offered was countered by a dramatic declaration.

I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem.  It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue.  This isn't something I express in how I act around others, but only in how I critique myself and my projects.  When I mentioned it to this coworker, she said, "Mine would be blank."  This is another choice.  She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.

People have a tendency to perform how you expect them to perform.  Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.

We make choices daily, to be victims of our circumstance or creators of the positive.  I am choosing to be a creator of the positive.  I am choosing to have more control over how I feel about my MS than to let it take control of me.  I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me.  But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.

I hope my rambling made sense, and that I don't seem like too much of a devil's advocate.  But the path to healing isn't easy, it isn't pleasant.  We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time.  May you all choose the path of creation, not victimization.

Love, MSloan

MSminds Chat - 3/16/2016

I found another chat on Twitter today - this one is called MSminds! 
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)

Q1) Has MS had an affect on your mental health?

Yes and no.  I have always suffered from depression and anxiety, but it definitely has spikes.  It hit a huge peak right before my big flare that got me diagnosed.  However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation.  Saved me a lot of pain.

Q2) What has your experience of mental health support from healthcare professionals been like?

Surprisingly good, at least as far as my MS is concerned.  My first neurologist asked me if I wanted to be put on an anti-depressant.  It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety.  I initially said no - but knew that I needed to do something.  I told her, "Actually... actually yeah, yeah I do need an anti-depressant.  Thank you."  Best decision I ever made.

Q3) What do you do to boost your mood?

 I have started writing a "Positivity Blog," every single day.  I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow.  Really is starting to help.

I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."

Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?

My blog!  http://itoocanlovemyself.blogspot.com/

Q5) What more could be done to educate MSers about looking after their mental wellbeing?

Let them know that there is nothing scary about medicating for depression/anxiety/etc.  I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).


Thank you all, this is a really important topic!  I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan 

ChatMS, 3/14/2016

Alright, peeps!  Time for another installment of post-hours ChatMS!

I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner.  Spending a lot of "spoons" tonight.  Looks like this was a good one!  Don't forget to copy/paste the questions to your own blog!

Q1: Has your social life changed since being diagnosed? If so, in what ways?

Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be.  However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic.  I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'

Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?  

I didn't tell many people for two years.  I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month.  They don't understand it and they never will.  The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis.  Mixed reactions from everyone I told.  I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.

Q3: How long after meeting someone do you tell them you have MS?

As a general rule, I don't tell people right away.  This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way.  It's just not worth the hassle.  I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all.  It was MS brain.  And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers.  I don't wait at church.  To me, church is off the table.  If you are going to judge me at church, you shouldn't be at church!

Q4: How do you tell people? When the time is right? Or it just comes out in conversation?

I do both - when the time is 'right,' and when it makes sense in the context of the conversation.  I don't just blab about it.  Again, seems like an attention getting thing - and you get negative attention for something like this, no positive.  People pity you, they don't want to understand you.  As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle.  I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy. 

Q5: Are there times you're ever hesitant to tell people you have MS?

Abso-freaking-lutely.  In a professional context, this is a HUGE no-no.  I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability.  I'm an ADA risk.  Is it incredibly illegal, unfair, and terrible that I would worry about such a thing?  Yes.  But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly.  They took my interview and I heard not another word.  It was very painful, but I learned a very hard and valuable lesson.  Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.

It's shitty, and I hope this changes.

Q6: Did you meet your significant other before or after being diagnosed?

Long before.  We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons.  My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices.  It was a hard year.  And then... I got sick.

He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical.  When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!

Q7: Do you think having MS decreases your chance of finding a life partner?

I can't comment on this because of my answer to Q6, but why the hell should it?!

Q8: Do people treat you differently after hearing about your disease?

Yup.
Negatively.  Awkwardly.  Skeptically.  And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.

Q9: Do you find that most people are understanding when you need to reschedule plans?

Eh.  I kinda have a reputation as a flake.

Q10: Does MS hold you back from living a full life?

Hell no!!  As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!

Love to all, I really liked this one!!  I look forward to seeing other responses :)
MSloan

Optic Neuritis - The Saga Continues

Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut.  I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.

As an artist, this is somewhat mournful, since I don't see detail the way I used to.  Even with both of my eyes together, there is a constant sense that something just isn't right.  Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well.   I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.

How I'm seeing, Good Eye Vs. Bad Eye:

When you have something like ON, once you mention it, that's all anyone wants to hear about it.  When it first occurred, my coworkers would ask how my eye was, for about the first two weeks.  When it didn't improve, they stopped asking.  I haven't been asked about it in over 10 weeks.  Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition.  I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.

That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others.  It's awkward.  No one wants to talk about it, and it isn't real to them.  It can't "be that bad."  But of course they feel that way, they don't have to live with it!  It just isn't real.  And honestly, it wasn't real to me in regards to my patients until it reached a certain point.  Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!

My positivity blog is helping with how I deal with the day to day.  I wish I wasn't facing drama at my workplace, but I am trying to rise above it.  It is so petty to fight with one another as adults, isn't it?  There are so many much more important things.

I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea.  I know everyone's ON is different - this is very close to what mine actually looks like.

About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan