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.

361 Days of MS

Hello all!  It's been a while!

I apologize for not giving frequent updates - but that is a GOOD thing.  It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?

Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure.  Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains.  I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting.  Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please!  As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?

It has been almost a year since my MS really 'began.'  I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb.  It no longer was an ignorable problem.  After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.

I no longer have constant numbness in my left leg.  I can work out now without any tinglies as well.  For the most part, I feel back to 'normal'!  It's a great improvement.  But I am aware that things aren't perfect.  My left toes occasionally go numb and tingle.  My forearms have the most numbness, though it never lasts an entire day.  Sometimes it is there, sometimes it is not.  The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.

My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time.  My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy.  To go off the medication at this point puts me at a number of risks that we have to weigh.  I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever.  Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.

In the meantime, since about September of this past year, my family has gone through a huge change.  My father was accused of murder early in 2014.  My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her.  I consistently tell the joke that everyone loves my father but my mother - but that really is true.  Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed.  I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood.  I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.

So how is everyone else doing?  Have any of you had any new symptoms, treatments, or issues you need to get off your chest?  I'm all ears (or eyes, as it were).  Love to all!

Making Decisions

I decided to go with Gilenya.  I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues.  It's the day after my birthday, FAN-TAS-TIC.

Right now, I'm struggling with the decision of telling people about my diagnosis.  You know how the internet is, well, a semblance of anonymity?  I have always been a very active person with social media, and I probably have way too many accounts to keep track of.  So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter.  I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.

In real life, however, having a chronic illness can be very different and difficult to share.  You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'.  What is NKOPA?  The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions.  As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use.  My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.

The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all.  If I could have kept my legs from going numb by eating more grapes, I would have.  I would have drowned myself in grapes (and I don't even drink, haha!)  But that is not reality.  Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.

By the way, do you want to know how to tell if someone is Vegan?  Don't worry.  They'll tell you.

So today I am asking for some responses.  Did you tell people in your immediate circles when you got your diagnosis?  Did you tell anyone at all?  How did the people in your life respond?  I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead).  I would love to hear some real-life experiences of what you went through when you were first diagnosed.

Thanks all,  Margo