Where the Boat is Floating Now

Ok, I have taken a Norco, I'm real calm.

You know, this medication definitely has a euphoric effect to it after the pain killing kicks in.  I haven't taken one in about a week, as I'm trying to make sure I don't end up with a much bigger problem of addiction at the end of all this.  But it definitely enhances the usual happiness I feel at the end of the day when I spend time at home with my daughter, my kitties, and my husband.  It's like putting a magnifying glass on my usual "happy" level and turning it up.  My daughter always makes me smile and laugh, but when I'm "under the influence," I almost want to break down in tears.  I want to share it with everyone.  I make a lot of Facebook posts when I'm on the Norco.

The best one tonight?  I took a bite of my Chocolate Fudge Brownie ice cream and nearly fell over with delight.  I haven't eaten that kind of ice cream in a long time.  Now, I probably would have super enjoyed it anyway because of what my diet has been forced to do lately, but I know that the extra "kick" I felt was due to the Norco.

I had 2 days of colon prep before my colonoscopy a week ago.  This time, the cleanse was successful - probably in no small part from the huge amount of laxatives I took three days before, the start of the prep two days before with the liquid diet, and my diligence to just choke down the rest of that drink.  I went in to the appointment totally prepared and calm.  I was even joking with the nurse who helped me out - it's amazing how different the experience is when you know that to expect, and that you're actually ready!

My gastroenterologist came to see me before they totally drugged me out, and she let me know that my MRI results showed a "long fistulous track."  When I think back to my lower-right quadrant abdominal pain that plagued me in late 2014 (see November 2014 posting for details), I now know that it had to be the beginning of this.  I have since read my abdominal MRI report and, while not as easy to understand as the brain MRIs now that I am familiar with the terminology, it seems evident that the end of my small intestines has a hole that leads into a pocket of fluid, and down into the dome of my bladder.  The entire top of my bladder is inflamed.  There is just NO WAY this all started from this past December when I had some abdominal pain for a week - while that might have been the tail end, I can't think that the great pain I had November 2014 is a coincidence.  They never found anything, and I think the ultrasound tech was really concerned during that test because she saw something she couldn't understand.

I'm not stupid.  I'm a doctor!  HIDE YOUR CONFUSED FACE BETTER, PEOPLE!

Otherwise, I am living with things ok.  The biggest trouble is what happens after the colon cleanses - I have to be on a liquid diet for a few days, which makes my bladder feel back to normal!  Unfortunately as soon as I introduce solid food again, all my bladder symptoms start back up.  It really hurts to urinate again; not at the start of the stream, but at the end, like the contraction is painful against all the inflammation.  Debris in the urine, and cloudiness, like before my colonoscopy failure a few weeks ago.  Today I had sharp and dull pain along the area where I know the fistula is now (coincidence that its the same spot as a few years ago?  I think not!)  I'm virtually incontinent when I feel an urge to go - when I actually make it to the restroom, my body just stops wanting to hold it, so I have to get my pants off NOW NOW NOW!  So embarrassing.  Thank God for pads!

So, on to another day!   Love to all,
MSloan

WTF?!

It didn't work.

This post may be TMI.  But if you have ever had a colonoscopy, you will understand.

The bloody stuff didn't work.

The stupid, nauseating, saccharine, thick, disgusting stuff that I drank A GALLON OF didn't work!  I went to my colonoscopy and wasn't cleared out!  I stayed up all night, got 30 minutes grand total of sleep, and woke up panicked and super anxious.  I was terrified they would turn me away and say they couldn't do the procedure today.  Somehow I knew.

I got to the hospital alone.  My husband dropped me off but had to take our kid to day care.  So I walked in, by myself, and rushed up the stairs because he doesn't understand the meaning of "haste" when I told him I wanted to leave the house by 6:40 - not just barely leave by 6:50 and get there right at 7 AM.  I wanted to be there early so I could breathe.  NOPE.  Instead they kept commenting that my blood pressure was high.  No shit!  I was having a panic attack that everything I had just done for the last three days was worth nothing - the reduction in food, the liquid diet for 24 hours, and the dreaded "colon prep."

What a bloody nightmare.

The upper endoscopy was very uncomfortable, even painful.  I do remember it, though it isn't super vivid, thank goodness.  I didn't feel like I was choking, just that I had some painful thing stuck down my throat.  I even remember the little bit of colonoscopy that they did complete before they told me that my bowel was unclean and they had to abort - that did hurt.  But I basically passed out right after that.

I woke up with my doctor telling me they needed to reschedule the colonoscopy.  I am only grateful that I was able to get the upper endoscopy done today so it was not a complete waste of my time, energy, or money, as you forfeit the copay when they have to abort the procedure, because you're paying for all the prep and sedation.  Nightmarish.  And I have a meeting, a very important one, in two days.  I am terrified that this will get in the way of all my new plans.  I cannot have these issues right now!  I am not even 30 years old, for crying out loud!

Now, next week, right after Valentine's day (and highly unlikely that my husband will get laid), I have to start TWO days of completely clear liquid diet and drink TWO gallons of the nauseating stuff.  It is by far the worst part.  That stuff.... let me tell you, I am a very picky eater, so being forced to down something that disgusting is pretty much my WORST nightmare.  I would do anything for a pill instead, or a hundred pills.  I would even drink 20 ounces of water every half hour if I had to, but not this stuff.  I am just psyching myself out now that it won't work again, too. 

What in the world is wrong with my body that I can take FIVE laxative tablets and drink an entire gallon of colon cleansing electrolytes and end up with basically nothing to show for it?  Here I am, 24 hours after I began taking that stuff (which is supposed to start working within the hour, and totally clear your bowel out by hour 6) and I am still passing....well, it isn't clear, let's just say that.

I feel so tired.  So sick of being sick.  The fistula between my bowel and bladder is now leaking the disgusting fluid from the loose stools induced by that stuff.  But I am so panicked that next week I will have the same problem that I'm tempted to go on liquid diet until then.  Right now I'm going to pretend I'm eating like I just had my wisdom teeth out.  I won't be taking any of the vicodin, because that can cause constipation, and I wonder how much of that is my issue now.  The sluggish movement of my bowel might very well be part of this problem - and it may not be Crohn's at all.

She did get that endoscopy done, and took biopsies of my stomach and small intestine.  Miraculously, my small intestine looked normal.  My stomach was "inflamed."  I don't know what any of that means and can't find much, other than it might possibly be H. Pylori (the ulcer bacteria). 

Pray for me.  Pray for my bowels.  And pray that between now and next week that my insides move fast enough that I can get this damn test done and move on with my life!

MSloan

Uncertainty

Well, not much to report.  No change.

I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder.  This could explain all the weird urinary symptoms, with the absence of actual UTI.  I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.

I'm doing an at-home experiment as a result, called the poppyseed test.  It's exactly what you think.  I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.

I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part.  I do occasionally have more pain, but it's few and far between.  Wish I could say that things were healing, but my urine keeps changing and getting darker.  I'm peeing blood again.  So today it's not really getting better, but how I feel is getting more tolerable.

Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise.  Every morning when I stretch my right leg, it cramps up.  It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda).  Prednisone is seriously no fun.  Can't wait to be finally tapered off - only about seven more days!!

My life feels like I am at another set of crossroads.  It hasn't even been a year since I totally bailed from my first real job.  I loved that job, but there were so many things wrong with that location.  I just could not stay there any more, waiting for the ship to sink.  I felt guilty and terrible.  But it wasn't right.

Well, I feel like this just isn't right.  It can't be right.  I don't belong here!

There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!

Love, MSloan 

So Many Thoughts

Oy.

I really despise being sick.  I feel like I've been sick my whole life.

I miss my mother, even though right now she would probably be the absolute worst person to have around in this time.  She would likely make me feel ten times worse instead of better.  Nonetheless, I miss her, and wish I had her to call and talk to.

I miss feeling like I had a best friend I could just call and cry to.  I'm scared.  I don't know why my body keeps doing these things, without warning, totally impacting everything I do on a daily basis.

My job is not working out.  I love what I do, and I wouldn't change my career for the world, but this particular place is just not a good fit for me.  I don't know if I should try to stick it out longer before leaving, or if I should just cut my losses now.  I know they depend on me for these new locations, but there is so little business coming in besides what I brought with me from my last office.  How depressing is that?

My husband is tired of me being sick just as much as I am.  I haven't been able to have sex in two months.  That's an even longer break than usual, simply because I haven't been feeling well, and now I am understandably anxious about having anything happen in the region where I'm bleeding and have pain up my urethra.  I mean, if sex makes one vulnerable to UTIs anyway, this condition is making that possibility even more likely since I'm on the steroids.  He's losing patience with me, I can feel it, even though he says he's not.  It makes me worried that the support line I have at home is running out.

I wish I could feel the steroids doing something.  Since yesterday's cystoscopy, my bladder hurts worse and my urine is yet again changing more colors.  I'm confident that I'm not imminently going to die or something, but it's very nervewracking to look behind you after going to the bathroom and seeing a very unnatural sight.  It makes me want to crawl in a corner, sleep all day.  But I have a kid and I can't do that.  I wish my sister or family was here so they could help with the kid and I could get some rest.

I am grateful for my daughter, who snuggles with me in the morning, who wiggles her little bum when watching TV, and gets excited for little things like eating oatmeal.  She is truly the biggest delight in my life.  I get tired of having to constantly be moving around her, but I wouldn't change her for the world.  For this I have to keep my head up and remind myself every second why it doesn't matter what I'm feeling - if I allow her to grow up well, it won't matter how I'm feeling now.

That's what I'm telling myself.
MSloan

Uncomfortable Tests and How To Get Through Them

Good morning to all, and Happy 2018!

Well, no news is good news for the most part.  I haven't had too many things to talk about in regards to the MS department since my last post, which should be a good sign.  The unfortunate news is that now - something else has gone wrong!

Besides the classic MS symptoms that come and go (my L'hermitte's sign, the cramping toes, the fuzzy brain and fatigue), I have been generally well.  That is, until mid-December, when I had terrible stomach cramping.  My stomach would bellow and growl so loudly that my coworker could hear them across the office - I was certain I had some kind of obstruction, if it wasn't for the fact that at least my bowels were moving.  I have always felt a sneaking suspicion that I had some kind of inflammatory bowel condition (as I read they commonly accompany MS), so I figured it was something that would have to be addressed eventually.

At the same time, my husband thought the mole on my back looked suspicious (I disagreed...it has been there my whole life!) But to placate him, I made an appointment for a general physical.  I thought I would still be symptomatic with stomach pain by the time I came in - but it had subsided about four days prior to my appointment.  I asked about getting my foot looked at to finally get my bunion removed, got a flu shot, and asked for my birth control and anti-depressant prescriptions to be refilled.  All in all, it was a pretty uneventful visit the week before Christmas.  She ordered me basic labwork and I went on my merry way.

When I went in the next day for bloodwork, I didn't expect anything to pop up or look funny.  I always have slightly (as in, a few points) strange labs for a couple of figures, but nothing that has ever raised a red flag.  But this time I noticed that my platelet count (which normally hovers around 400-425, a little high but nothing big) had jumped to 570.  Whoa!  I felt fine, so I thought maybe it was just leftover from a stomach bug or whatever was bothering me a few weeks before.  She also noticed that my cholesterol numbers were all over the place, and my triglycerides were high.  Okay, okay, I know I haven't been very good at exercising lately.  But could these things be tied together?

I largely ignored the labs, and my doctors told me they wanted to retest in 3 months but weren't terribly concerned.  My neurologist was unhappy with my Vitamin D levels (granted, they were very low) so now I had to take more Vit D.  Easy enough.

I remembered reading that MS could give you issues with your bladder, and I had a history of UTIs that had no symptoms.  So I did an at-home AZO stick test, and found that I had a high level of white blood cells in my urine.  "That's odd," I thought, though the nitrate stick was fine, so I couldn't have an active UTI.  I told my doctor that I wanted her to order a full urinalysis and I would take it when I got back from my business trip in a week.

Well, here we were on said business trip - in Las Vegas.  Which means I was not at home.  My 20-month-old daughter was roaming the streets with my husband while I was in classes, and I noticed on the second day we were there that I had to go to the bathroom after every class.

UH OH, says every woman I know.

I drank water and drank water some more.  I paid close attention to every sensation - dammit, I feel like I have to pee again.  Oh no, now it's starting to hurt.  I was hating myself for even thinking about having a UTI, because now I was certain I had cursed myself, and I hadn't had one in years!  I moaned to my husband and we spent a lot of time walking back and forth to the Walgreens across the street.  They should have given me a job, I was in there so much!  I loaded up on Pyridium (the 'numbing' stuff that turns your pee bright orange) and cranberry juice, Cystex, and AZO strips.  By 10 PM, I was passing small red blood clots.  And that's when I had the thought - "You know, this isn't a burning...it's a soreness.  And now I'm passing blood clots.  It doesn't smell funny.  Could I have....Kidney Stones?!"

To be continued.....

A Mystery Solved

Well, the flare continues.  Bummer!

I had hoped that my run with spasticity and a random MS hug would have been the end of it, but it does appear that my whole body is going through some difficult times right now.  From head to toe, I feel like a rubber band that has been stretched too tight - every muscle hurts and it truly has the sensation reminiscent of being "just about ready to cramp."  Especially in my calves; I worry when I go to sleep that I will be woken suddenly by strong cramps, so I have been sleeping with my toes pointed straight up so that I don't angle my foot too much outward.

I did a lot of reading today, as I had to stay home from work.  I became very sick yesterday evening.  I have experienced a lot of abdominal cramping over the past couple of weeks, and it came to a pinnacle yesterday - I was in too much pain to eat more than a few bites of dinner, and I couldn't sleep.  I woke in the middle of the night and threw up - something I very rarely do.  It's been about 3 years since the last time, and even then it was very similar to this.  And four years before that, again a similar situation.  I hadn't in 15 years before then.

Things really got me thinking - as nothing I was doing seemed to help (not a single drug I took last night made me feel better), was this possibly related to my MS?

Over the past seven years, I have had a myriad of intestinal issues.  Looking back, I always describe my "knowing something was wrong" when I started to suffer from daily, almost constant nausea.  As someone who very rarely throws up, being nauseated was like torture.  No matter how many times I would mention this to doctors, no one seemed to care.  Maybe it was my BC, maybe it was the blind UTI, maybe it was stress...pish posh, something was wrong.  Two years later when I developed sudden heartburn that was so severe I couldn't swallow, I was told it was because I didn't eat breakfast.

Oy, to say the least.

Today while researching, I found some information on gastroparesis - and bingo.  It matches my symptoms perfectly and explains soooo many of my long lasting issues.  So while right now I am still very hungry from having too little today, and my stomach still hurts, I feel closer to an answer.  Isn't it strange ho having a reason makes it all so much easier to handle?

Love All,
MSloan

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

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.

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

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

Looking to the future ...

I'm wondering what to do after this baby arrives.

Should I breastfeed for 3 weeks?  4?  Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved?  Should I get steroid treatment this far away from the initial injury and hope it improves things?

Where do we go now?  (Cue Guns & Roses)

I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth?  Anyone have flares while pregnant?  What did your neurologist recommend?

Thanks, all!
MSloan

Coming Out of the MS Closet

Tonight, I finally did it.  I finally just bit the bullet and stopped beating around the bush.  I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.

This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS.  No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!

Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.

It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."

Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.

I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.

Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.

People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?

March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.

Wear ORANGE!

Keeping A Record

I have been on a path of healing.

My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness.  It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again.  As an artist, that's very painful.  But I'm trying to move forward, and not stay stagnant with my feelings.

Facebook can be an excellent record keeper, did you know that?  As I have been getting older, I have become less whiny in general over my circumstances.  But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were.  Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea.  I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months!  As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record.  And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.

I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal.  This book describes me and my experience to a T.  I  feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.

I hope you find your healing as well.  Love to all,
MSloan

ChatMS 2/8/2016

This week's ChatMS was all about relapse triggers - something I have learned a lot about.  Remember to cut/paste the questions to put on your own outreach, and spread the word!


Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)

This is an excellent question.   Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning.  It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them.  I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.



Q2 – What have you found that supports your theory?

See above - where I grew up debunks some of the theories about Vitamin D.  But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early.  I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.

Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?

Stress is the number 1, number 2, and number 3.  Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense.  The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way.  My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned.  Right before this, my left side failed.  I had to cancel the first trip and, therefore, the first job interview.  I lied about the rest.  In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities.  None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.

Q4 – What have you done to avoid these triggers?

Honestly?  In my case, it was moving away from my mother.  She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares.  When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones.  I have yet to meet many people who have failed the treatment like I did.  Not a coincidence that my mother was more present in my life that month because of my diagnosis.  It is very important that I am aware of her effect on me.

Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)  

I am about a 4.  I'm pregnant, what can I say?  :)


Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are? 

I'm about a 2.  Heat absolutely effects me.  I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me.  I have always been heat sensitive, even as a kid.  When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs.  Very disconcerting and I worry about falling and hurting others.

Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?

 HA!  Does anyone's neurologist really care that much?  My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.

Q8 – What tips would you give to others to try and stay clear of possible triggers?

Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger.  I didn't want to get away from my mother as badly as I really needed to.  She raises my blood pressure and gives me so much upset.  If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much.  I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs.  It is hard at first to eliminate triggers, but is well worth it.  Good luck!


That's  a wrap, all!  Thanks for reading!  - MSloan 

About Something Else

I don't want to make my mother suffer.  That isn't what I want.

But I can't feel sympathy and compassion for someone who sends me these things in the middle of the night, but refuses to acknowledge that she needs help:
"monswters," "unrelenting evcil," "demon death to alkld humans," "died iun ny9our samddorasl msewage,"  "dlalkl oifd them murdsere3rklesdg."

I AM DIRECTLY COPY/PASTING HERE.  My mother is a master typist.  This person... needs help!!
I can't get her help if she won't seek it herself.  I can't get her to stop sending me the hate mail and I worry too much for her safety to stop checking on it to make sure she ISN'T claiming to have hurt herself.  Because just minutes after the last, obviously banged-on-the-keyboard message, was this very clear one:

"the best one is this and it is SO TRUE that in my nightmares I KNOW THIS TRUTH. there is NOTHING you people will not do to ruin my poor little life.  and I mean there is NOTHING TOO LOW for you TO DO."

These messages are NOT being instigated by anything at all.  I haven't written her back in days, because they upset me so - most of my responses are answered with barrages of nasty messages in return instead of just replying to whatever it is that I said.  My mother is the only one who's never seen an ultrasound of my baby.  She doesn't know my doppler came in, because she wouldn't answer even if I would call.  But at 4 AM, I got a string of disgusting, disorienting, misspelled and disturbing messages about how myself and my sister are putting her in danger by having a relationship with our father.  Who, by the way, she thinks killed his friend, her grandson, and a random old woman who lived near his regular bar.

My father is not a murderer.  I can't get her institutionalized without calling the police, but nothing changed and I mean NOTHING changed after her last 72 hour hold.  It has only gotten worse.

What... what do I do?
MSloan