Happiness is Acceptance, Acceptance is Peace

It's been a few months, and I've realized something.

My medical history is a full one, for sure.  This year alone, I will have trumped what most people experience in their medical lives until they reach their mid to late 60's.  In the last four years, I have learned more about myself and my disease(s) than my medical professionals typically know off the bat.  It has made me a better clinician to my patients, and it has made me more empathetic as a human.

But most importantly, I feel it is vital to stress one fact: my life is not hard.

I say this now, having lived a hard life.  Sure, I can sew sonnets of woe for my past, I'm even writing a book, and I could elicit an "awww" response with a genuine story every day if I wanted to.  But I don't.  Because as hard as my life has been, I owe it to the world not to complain about it - and because I know that, right now, it is not hard.

I have a husband who loves me, and who is so patient with me and my many idiosyncracies.  I find joy in the stupidest things - from finding a clutch of snail eggs on my aquarium wall, to watching my bunnies leap over each other in the yard.  I pulled the weeds in the front of my home today, feeling pride that I have a place to keep nice.  I admired my daughter for minutes on end this evening, watching her jump around in her pajamas and yell out colors.  I love watching her grow.  I am at peace.  And, most of all, I am happy.

I know a large part of my happiness is due to my medication - when I was stricken with anxiety 24/7, I could count the days that I felt well because they were so few that I had to take stock of them.  Just before I was diagnosed with MS was one of these times - and it came crashing to a halt because of a public panic attack.  I don't have those any more.  Things have somewhat swung the other way now, to tell you the truth - I watch emotional films and listen to sad songs and do not shed a tear.  I haven't really cried in months.  I welled up at the end of "13 Going On 30" the other day for about a minute - then it dried up.  I don't expose myself to feelings of anxiety or sadness on purpose any more, and I think this is a big reason why my brain doesn't process those emotions as readily as it used to.

I am very pleased that, at 30 years old, I am content with where I am in life.  I love my job.  I love my family.  I love my home, my pets, my plants.  I even like myself most days, a huge change from where I have been.

No - I am not healthy.  But my life isn't hard. 
I know plenty of healthy folks who are beautiful, put-together, and miserable.

There is a balance of life - what we are given, and what we do with it.  I choose to make the most of what I have been given - even if that set of cards seems like a shit hand at first.  You never know what will be wild!

Love 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

An Unhealthy Coping Strategy

Hi, my name is MSloan, and I am a shopaholic.

I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression.  I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction.  I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.

I started to get "sick" around this time - the infamous part of my life that I describe as such.  I know now that it was the beginning of my MS.  But then - I was just getting sick.  Sick in an indescribable way.  Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.

So what did I do?  I went shopping.
I shopped and I shopped.  I went to the JcPenney no less than three times per week.  I was constantly crawling the mall, looking for sizes that fit.  I bought lots of clothes of the same style in different colors.  Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff.  The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station."  But I didn't care - I craved respect, because I couldn't give it to myself.  I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.

I didn't go into tremendous debt for my shopping, but I knew I had a problem.  If I wasn't at home or at work, I was shopping.  I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often).  I knew every inch of the store.  I was at these stores so much, there was no point in shopping - I knew all the inventory.  I shopped online.  I learned that inventory.  I memorized where clothes were on each page, which color I could buy it in, what size.  I learned the names of styles and fabrics.  I bought shoes.  I bought jewelry.  I kept shopping.

Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low.  This year, I have found myself falling back into that cycle.  I thought I was feeling well enough about my circumstance, but clearly that's not true.  I have bought literally thousands of dollars of clothes.  While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for.  I bought $200 of clothing yesterday.  I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.

What is wrong with me??

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

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.

ChatMS 3/21/2016

Hey all!

I have less than a month until this baby's due - whew!!  I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast.  I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly.  I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine. 

We'll be okay.

This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed!  My blog has chronicled this well, but I'm happy to answer these questions.  I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!


Q1 – When did you get the Multiple Sclerosis diagnosis? At what age? 

February 28, 2014.  I was 24 years old, but had been symptomatic since late 2009, early 2010.  Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot.  It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.

Q2 – Were you aware of what MS was at that time?

I knew more than most.  I see MS frequently at my job, and just before this happened, I saw an influx of MS patients.  I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to.  It frequently flared at that time of year, which is odd.  The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!"  And so I ignored what I was going through until I couldn't anymore.

A couple months before my D-Day, we got a new front office person at my work.  She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri).  My heart skipped a beat when she told us she had MS - I felt like it was yet another sign.  She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.

Q3 – Where were you when you got diagnosed? Was anyone with you?

It was a trip to the ER that did it.  On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch.  I called the two most important people in my life: my husband and my sister.  I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so!  They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.

Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?

"Great, I knew that, what do we do about it?"

Q5 – What were the reactions of your family members and/or friends?

A lot of silence.  The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up.  A couple well-meaning friends started offering advice about my diet, exercise routine, medications.  My husband was so thankful it wasn't a brain tumor that I don't think it sunk in.  My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing.  I know she was very uncomfortable about it and didn't really know what to do or say.  It wasn't long before she started in with the diet thing, too.  I'm glad that phase is pretty much over!

Q6 – What did you do to learn more about MS after you were diagnosed?

You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from.  Which is odd.  I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk."  That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality.  Yes, it's a possibility.  But it's also possible that I will be hit by a car tomorrow.  Time will tell, I guess.

I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease.  I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.

Q7 - If you could go back and tell yourself one thing on your D-day what would that be?

"Reduce your stress, keep this to yourself, and know that things can always get worse.  This isn't the end of the world, just the beginning of a new understanding of yourself.  You are validated, don't tell others and make a big deal of it - because they won't comfort you.  Comfort yourself."

Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?

See above.  This truly is the best advice I can give.  You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need.  So find support with other MSers, not your friends; and do NOT tell prospective employers.  A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week).  So sad.

Love all!  MSloan

ChatMS, 3/14/2016

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

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

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

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

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

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

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

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

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

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

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

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

It's shitty, and I hope this changes.

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

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

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

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

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

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

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

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

Eh.  I kinda have a reputation as a flake.

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

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

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

Optic Neuritis - The Saga Continues

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

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

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

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

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

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

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

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

ChatMS - 3/7/2016

Good evening, all!
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!

I've been supporting MS Awareness Month on my facebook page, posting a fact every day.  Don't know if that will continue as regularly, but I want to educate the people around me.  Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress.  We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.

It was the celebration of ChatMS' 1st year in existence!  Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!

Q1: It’s been one entire year since #ChatMS has launched. Can you believe it or what?

Woo, go #ChatMS!

Q2: How long have you been participating in #ChatMS?

I've been participating for about six months!  I came across it one day when I just happened to get home from work early.  In California, the chat starts at 4 PM.

Q3: How did you hear about #ChatMS and what made you join?

Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early.  I had recently deactivated my FB account and the people I followed were big #ChatMS participants! 

Q4: Do you remember what our first (or your first) #ChatMS was about?

You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders.  I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.

Q5: What does our weekly chat about #MultipleSclerosis mean to you?

I love #ChatMS and how it allows me to connect with others who have this disease.  We have it, it does not have us.  But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.

Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!

(Not applicable for post-chat commentary)

Q7 - What can we do to improve #ChatMS

I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.

Q8 - have you been able to make connections and build a stronger support system thanks to #ChatMS?

Absolutely - and it gives me great blogging material!!  :) 

Q9 - What can we do to get others to join future #ChatMS sessions so you can gain more insights?

Maybe have more than one per week, in different time zones.  Those of us out here on the west coast can't participate if we're working!

That's all, folks!  Keep the conversation going!  :)
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!

ChatMS: 2/29/2016

Happy Leap Day!

Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?

I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis.  Like my depression, I gather many will be surprised, as this is just as invisible.  If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?

Q2 - What have you done in the past to raise Multiple Sclerosis awareness?

This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!

Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?

Rats - no.  But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!!  :)

Q4 – What do you think is the best media to spread MS awareness?

Face-to-face, absolutely.  I have spoken with many patients about my MS and been thanked for opening up about my struggles with them.  Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness.  When we battle our illnesses together, we become a team, and they trust me more as a provider.  I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.

On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course! 

Q5 – When asked, how do you describe Multiple Sclerosis?

I say that my brain likes to eat itself!  I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin.  When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber.  So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis.  I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering.  I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.

Q6 – What items can be frustrating when raising awareness?

"But you look fine, so it can't be that bad."
You have no idea what this actually feels like.  I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all.  On my great days, of which I usually have many in a row, I forget about the MS and just live.  It's an excellent feeling.  But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it.  I've felt intermittently sick since late 2009.  Before that, I was a generally sick kid, always getting sinus infections and having ear problems.  I'm really ready to not be sick anymore.

The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it.  When I start telling people I know about my disease, I'm sure they'll start to care.  But you have to have a reason to get behind something.  People usually have a reason to get really 'into' wearing pink for breast cancer.  I want more people to find reasons to wear orange!

Q7 – What would you consider a successful MS Awareness effort?

Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research.  And not compare the different people they know to me; have a healthy respect that everyone's case is different.  I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS.  Everyone's case is different.  I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.

Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?

I'll admit, I wish I did more to spread awareness in this respect.  But I have so rarely been asked for 'more information,' this feels like an empty question.

That's all, folks!! Have a great week -
MSloan 

Two Years Is Not Very Long

Good morning readers,

Today marks 2 years to the day that I woke up and could not feel my left leg.  Technically, yesterday was, but this marks the day that I really 'knew' what was going on.  I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.

Something was wrong ... and I knew instantly that it was MS.  I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty.  I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion.  I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on.  It was a sad and oddly supportive time.  I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait. 

Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened).  I had Multiple Sclerosis.  I read the report describing several 'foci of restricted diffusion,' the title of this blog.

Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child.  I am 32 weeks along and she is kicking away today.  I am just as scared as I was two years ago, but for entirely different reasons.  I have a new reason to be excited for the month of March, and it isn't job interviews and trips.  It's getting ready for my Tesla.

I wish I could say that in these last two years that I have really learned a lot.  I have, but so much of it has been negative that I choose to try and focus on other things.  My mother has declined into a complete state of paranoia, frequently.  I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot.  Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.

Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband.  It's a lot of things to take in!

Love to all, MSloan

ChatMS - 2/22/2016

Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were!  (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )

Enjoy away, and feel free to copy/paste to your own blog!  Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!

Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?

I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time.  On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!

Q2) How does everyone handle fatigue?

I have to learn to say 'no.'  I'm not very good at this, haha!  But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go.  If I overdo it one day, I won't be able to function the next! 

Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?

HA!  This is one of those things I should be doing, but am not.  I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits.  But as for real MS symptoms, not really.

Q4) What type of exercise is easiest and benefits your MS the most?

 Yoga, yoga, yoga, yoga.  Yoga all the way.  Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.

Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?

Dear Lord, no, but I certainly hope I never have this one.

Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?

Just try to sleep whenever.  Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!!  Oy vey.

Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?

You mean I'm not the only one??!  I have struggled with constipation for so long I can't even tell you.  Pregnancy again makes this one all the more enjoyable.  Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in.  What was already bad was made monumentally worse.  Let's just say I should invest in Preparation H and leave it at that.  #TMI #Sorry

Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?

I used to get headaches daily.  They usually hit around 3 PM or later, and were tension related.  I felt them on both sides of my head, a dull ache.  When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them.  After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides.  I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork.  Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy.  I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.

I do get migraines, once in a blue moon.  They give me auras and tend to hurt on one side of the face.  Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups.  Just wait it out and pray you can see afterwards.  This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt.  I think I prefer the blindness to the pain, honestly.

Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?

My MS is not my whole world.  I talk about it because it makes me feel less alone.  I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.

I'm not faking, and I don't want your pity, or even your attention.  But acknowledgment that this is hard would be very validating.

Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?

I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it.  I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response.  I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.

Q11) Fill in the blank... I have MS, but MS will never stop me from __________!

Creating, in one medium or another! 

Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?

I loved my Gilenya.  As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days.  It did the trick for me, as long as I could keep my stress level low.  I would like to go back on it after my baby is born, if my neurologist is willing to work with me.

Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?

I only got this a few times with my previous numbness, and it was very disorienting.  Like your foot "waking up," the worst part of it.  But all the time.  I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step.  So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.

That's it for this week, folks!!  Tune in next time!
Love, MSloan