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

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

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

Keeping A Record

I have been on a path of healing.

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

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

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

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

ChatMS 1/18/2016

Hello all!

I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California.  I don't have any issues with that, so I couldn't relate to any of the questions.

If you are affected by cold weather, please tell me your story!  In my case, I only notice issues when it gets above 95.

This week's ChatMS is another one on symptomology.  Please feel free to cut/paste the questions to put on your own blog.  Keep the conversation going!

Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?

Abso-freaking-lutely.  I can't even count on both hands the number of great nights of sleep I have had in the last few years.  Being pregnant compounds this, for sure!

Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?

Insomnia is the big one.  Mostly, when I wake during the night, I can't fall back asleep.  I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.

Q3: What symptoms do you experience that disrupt your sleeping habits?

See above - but I also have frequent urination, heartburn, nausea, dizziness.  Leg cramps!!!!  Not all the time, and thank goodness not all at once.  But these issues rear their ugly head on occasion and good luck sleeping through that.

Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?

Absolutely.  I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes.  I do not believe it contributes to my MS fatigue, which is a beast in and of itself.

Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?

Oh, the fatigue.  The fatigue, fatigue, fatigue.  Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.

I have had depression and anxiety for many years - since I was a pre-teen.  Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed.  It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up.  MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up."  It is a can NOT.  I can NOT get out of bed.  I can NOT get off the couch.  I am stuck right where I am.

I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed.  The next day I could not get out of bed.  I nearly wet the bed because of this fatigue.  I was sitting on my couch and felt what can only be described as a heaviness.  I couldn't get up to eat.  I couldn't pick up my computer or my phone.  I just sat there, at the mercy of my cats.  Exhausted, but not tired - I didn't sleep all day.  And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.

Q6: Have you talked to your neuro about your sleeping habits?

Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.

Q7: Are you on any meds to help you have a good nights rest? Which ones?

Nope.

Q8: If you have extreme insomnia what do you do to help you fall asleep?

Flip my pillow over.  Get up and go to the bathroom, roll my husband over so he'll stop snoring.  Read something very boring.  Climax.  Deep breathing, in through the nose and out through the mouth.  Clench all my muscles in systematic patterns and release.  I have yet to find the perfect cure to insomnia but I keep trying!

Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?

Keep a log of when you get up; maybe there is a cycle to it.  I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM.  If I get up at 3 AM, it's usually because of my cat because that's HIS cycle.  It might not help you fall back asleep right away but it's relatively amusing!  And know you aren't alone.  Keep a bottle of water by the bed and practice good breathing techniques. 

New Hope

No, not Star Wars.  MY new hope!

I mistook my MRI date for the 24th, today, when it was the 29th.  I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning.  I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.

My doppler finally arrived, so I was able to bug my baby and hear the heartbeat!  So exciting.  The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better.  Puts everything into perspective.

Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway.  So, all good things.

On that note - I have to make a special shout-out to pregnancy pants.  They are the most comfortable things ever, and I will most likely never go back to regular pants again.  Why would I now that I KNOW the secret? :)

Love to all today, I am making chili for a cookoff this evening.  Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan