Welcome To A New Year

Hey all!

I am sorry for my continued absence; turns out, raising a baby when you have MS is very difficult!  I find myself getting really exhausted really quickly, I can't stay up past 10 PM most nights, and whenever I get a free moment, I want to play with my daughter, so that leaves little time for blogging.  Or reading.  Or eating.  Or cleaning.  I pretty much have no time for anything!

My MS has remained very stable since she was born, though.  My right eye is still mostly useless (went dark in December 2015).  I am grateful for every day that I don't have a bad symptom.  A few months back, I had an honest-to-goodness MS Hug that almost floored me.  I really thought I was having a heart attack.  The "Hug" (still want to clock whoever came up with that name) began in the middle of my back and spread to my sides.  It was painful, as if my muscles were being squeezed, which made it hard to breathe.  Lying down made it worse.  I called the ER to make sure, you know, I wasn't actually having a heart attack, and they told me that they couldn't really help me.

Which was then topped off by having to explain to several nurses that, yes, MS can cause pain, that it could be the cause of my current predicament, and no, not all people with MS just slowly lose control of their bodies until they can't walk.  How nice.

My advice for the new year is thus: focus on the positive.  I think my MS is better because I am reducing stress around me as much as possible.  Remember that MS is triggered by stress - positive AND  negative alike - so don't forget to breathe during the day.  You'll get through it!

Love all,
MSloan

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