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

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.....

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.

MSminds Chat - 3/16/2016

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

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

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

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

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

Q3) What do you do to boost your mood?

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

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

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

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

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

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


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

ChatMS 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 

Chat MS - 11/23/2015

This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.

Remember to keep the conversation going and have a great Thanksgiving -

Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?

 Absolutely.  I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.

Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)

This biggest thing is that I have MS at all.  People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.'  This goes especially with my coworkers and bosses, because having MS makes me an ADA risk.  I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant.  I have not missed a day of work because of my MS in over 18 months.

I also struggle with telling people that I'm with about the possibility of my fatiguing quickly.  I have a relatively svelte figure, am tall and thin, and otherwise look healthy.  When I mention that I'm too tired to do something, I get a lot of eye rolls.  I look good on the outside, but on the inside, I'm struggling to stay alert.  This is really a hard thing to feel good about.

Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?

7 or 8.  I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.

Q4 – Are there situations or places you purposely avoid because of your anxiety?

Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it.  This happens a lot.  It's the most common issue I struggle with when I'm not having an active flare up.  I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue.  Pain free.  I miss those times.

Q5 – Have you discussed social anxiety with your neuro? What did they say?

Nah - it never really came up and I doubt he can do anything about it.  Unfortunately social anxiety is not like GAD and isn't really affected by medication.

Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?  

Abso-freaking-lutely.  All the time.  I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help.  I have this dream a lot, and it makes me think about it all day long.  I worry about my ability to get around.  I worry I will have a flare that affects my hands and I won't be able to work.  I worry I will be out with friends and will have to stop before they're ready to.

Q7 - What do you feel when you experience social anxiety?

I get quiet and I don't want to talk to anyone at all.  I'm not an easy crier but it makes me feel like I am about to flood the room.  My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.

Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?

The best thing is to spend time with people who are willing to ask questions.  Tell people you don't feel well.  But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.

Love to all - MSloan

T Minus...

I'm giving it until Friday to see if things improve.  T

here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think.  I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal.  The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic.  In the morning, after walking around, I feel ok and barely notice the numbness.  By noon, it's starting to bother me again, ebbing and flowing.

Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.

Here's to hoping I can feel them by Friday.  If I can't, I will have no choice but to call my neurologist.

And I knew when I went to bed on Monday that my toe felt funny.

MSloan

My, how things have changed...

It has been a strange last few months.

Can you all keep a secret?

In May, I went off my medications.  I stopped taking Gilenya, the Lexapro.  I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms.  The Lexapro was another story.  As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone.  So I weaned.

Oh.. but weaning is so hard.  I broke my pills in half and took then every other day for weeks.  When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train.  It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).

I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week.  I have been spending so much time at the lab in Kaiser that they all know me there.  It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids.  GROSS SOLLY HEADACHE.

Well, I might as well get to the point then, shall we?

A little over a week ago, I took a few days off work.  I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare.  I really needed some time to myself and to think.  But on my first day of my little vacation, I took a pregnancy test.

:)

It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking.  I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab.  Nothing at this point is certain.  Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya.  However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual.  The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.

I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that.  Which is such a sad thought.  I have worked so hard to make my family happy and have not succeeded.

I am tired and she is, of course, berating me over email about the same old thing.  I guess she won't find out today that she will (most likely) be a grandmother in April.

Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo