Not Okay

 I'm not okay, I'm not okay

I'm not okay again today

I feel ragged, torn, and shunned

Hated by just about everyone

Including myself - indeed, the most

I seem such an unlikely host

For creativity at all

And when I'm stuck within a fall

I can't get up, can't move my legs

They're stiff and broken like old pegs

But no one knows because to me

I'm too invisible to see

So here I am, online again

Praying for an early end

To get me out of this deep hole

Or maybe something to cleanse my soul

So I feel free, honored and loved

And stop staring at skies above 

Where nobody looks down on me

I know it - its simple to see

I'm just alone. Alone again

Oh how I wish I had a friend

Someone to trust and share my things

Someone who missed me, my art, my sings

Instead I'm sitting here alone

Solitary, on my own

Streaming tears straight down my face

Only a paper mask in its place

Because I need to hide those tears

Embarrassment one of many fears

That keep me locked up deep inside

Shuttered beside my wounded pride

So no, I'm not okay today

I'm not okay. I'm not okay.

I wish.

 I wish I felt well.

I wish I felt like my life was worth living. Right now, as I sit in my car, I do not.

I am 30 weeks pregnant and feel alone. All my projects have gone nowhere and are worth nothing. This is what it feels like again to not be medicated and living with my actual brain.

I fucking hate it. I hate myself and I miss my drugs. If I wasn't so worried what it would do to baby Eddie, I'd go home right now and take five Lexapro to kick start feeling better again.

I touched up my fanfiction and couldn't stop fiddling. Suddenly my character was an abuse victim, like me. Suddenly he had self-harm scars and died in his lover's arms. And then I kept writing. I wrote a full-length, contemporary novel of their story in three weeks. I've been fiddling with it for two months. I hate it. It's awful. Nobody likes it. But why are they still banging on the door in my head if I'm no good at telling their story?

Writing is yet another thing I am no good at. I don't even know why I try to be creative anymore. I used to think I was a woman of many talents. Now, I'm just a loser jack-of-all-trades who knows a little bit about a lot of shit nobody cares about.

So I sit in my car, trying to breathe through my stuffed nose, and pound my temples for day 4 of this neverending migraine. I filled out paperwork for a new therapist yesterday. That first appointment can't come fast enough.

I'm a burden on those I love, and myself. I'm not suicidal and never have been.

But I get it. I see why Mom did what she did.

I could never do it. I'm not brave enough. But I wish my brain would shut up long enough so I could give up these projects for a while instead of being left feeling like I have a million half-baked projects and no direction.

I'm a mess.

I wish I felt well.

Writing, Growing, Changing

 I am happy to say that I haven't been writing in my MS blog, because my MS has been pretty stable for the last two years.  What a relief!  I have been off my Glatopa (injected) medication for about 8 months now - I stopped taking it because after getting changed to a two-day injection, it was too easy to lose track of.  As much as I hated the pain and burning, I certainly found that daily injections were easier to track.  If/when I go back on medication, I will need a daily option.  Keep your fingers crossed I get back to my Gilenya! 

Since I last wrote, I had surgery to correct the Crohn's disease issue; this wasn't until I had to be on a boatload of steroids and Norco for several months, gained a ton of weight and had a lot of issues in the process.  The medical procedures that I had to endure because of the bladder/intestinal problem make all the tests I've done for MS look like a routine physical.  Have you ever heard of a cystoscopy?  It's pretty much my worst nightmare in a nutshell.  I was supposed to have another one six months after the first to make sure I didn't develop bladder cancer.  Spoiler alert - I never did it again, it was too much to deal with, and after the surgery, my bladder got so much better I didn't even deal with it.  18 months, folks, of living with a constant feeling of UTI and pain.  Other than my back and aging, I feel mostly pain-free, which is so amazing! 

Before I went in for my surgery and had a foot of small intestines removed, I tested positive through 23 and Me with the BRCA 1 gene mutation.  The BRCA gene is present in all individuals, and it relates to how the body deals with tumor growth.  When left unchecked, mutations in this gene lead to significant increases in risk for Breast and Ovarian cancers.  With BRCA 1, the risk goes from 12% to max 85%.  WHOA that's huge.  Ovarian goes from a very small number, like 4-5%, to max 60%.  Since I already lost my mother young (and now I'm not convinced she didn't have some metastatic condition that moved to her brain), and she lost hers young to Leukemia (I looked it up - unrelated to BRCA), I know I am going to have prophylactic surgery in the next few years to cut those risks.  I wouldn't want my daughter to grow up without a mother.  If there's something I can prevent, especially when I already come with a slew of bullshit body problems, why wouldn't I take that opportunity to do it?

So, I'm 32.  Hysterectomy planned for 35.  While I was dealing with the bladder issue, I had a doctor flat out tell me "don't get pregnant!" And after surgery, when I was talking with a new OBGYN about my BRCA status, she said, "I'm glad you have a child, because you're done."  We had accepted that we weren't having any more kids.  But my heart started hurting earlier this year - so now we are trying, a final desperate attempt to get pregnant, and give our daughter a sibling.  She would make a wonderful sister, and talks about having a sibling often.  I hope we succeed - but if we don't, that's ok too.  We have a lovely, huge, Great Pyrennes doggo who is such a snuggle butt.  Our family will be complete either way.  But keep your fingers crossed and send me baby dust!  We are on our 4th month of trying officially after I pulled the goalie.

Going off my antidepressant was by far the hardest part of this process so far - when I went off it, I didn't get as dizzy as I did last time when I wanted to get pregnant with our first.  But the mood swings were unbearable.  I do think part of the problem was hormonal - I believe the first month I tried to get pregnant, I had a chemical pregnancy - I had several symptoms, had a funny feeling about it like when I was pregnant with my first, but no positive tests.  When Aunt Flo finally showed up, she hung around for way longer than usual and was very heavy.  The next month, I didn't have a period - and I had to take a heavy duty progesterone pill for ten days to kickstart it.  This will be the first month after a "normal" period, non-induced, since July.  I hope I actually ovulate and we don't have to keep doing this.  It's exhausting! 

I am running for a position in my state government for the licensing board of my profession.  I hope I get it - I would like to move forward with a political career in the future as we can see the geriatrics that run the nation aren't necessarily doing a good job.  I do think we can "make America great again," in that we can rise above our petty differences and improve our education, our standing of women's safety and progress on a world stage, protecting our environment and giving better longevity to our planet, evolution of technology and cleaner living, solving the housing and homeless crisis .... we have a long way to go, but we have a lot of room to move up.  It just starts by getting your feet wet.  Here's my first attempt at that! 

I'm getting back into writing the book about Mom.  Here's hoping I can handle it.  I have been talking about it for years, but I think it's time to just buckle down and finish it.  So wish me luck with that, too.  Maybe if I get that completed, I will reward myself with a re-write of the fanfiction again, write some new music, and get Water WAARS finished.  If only ...

OH!  I released an EP with my good guitarist friend Steve Sutherby!  It's worth checking out.  Just look up Margo Sloan wherever you buy music and you'll see our EP, "The Quarantine Sessions."  Hope you enjoy! 

Bye bye for now.  I'm going on a FB Hiatus, so I may have more time to blog! 

Best - M

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

Starting a New Medication

What a week, man.

Okay, well I am scheduled to start an infusion medication for the Crohn's disease next week; it's called Entyvio.  I don't know much about it, other than it won't flare my MS unlike other Crohn's meds like Remicade.

Am I shocked I have Crohn's?  Not one bit.  But I don't really have Crohn's symptoms, so I have to take their word that the inflammation is consistent.  I am hoping that the med will reduce things enough, but I am feeling like the surgeon on Wednesday is going to tell me I need to go under the knife and have a resection.  I might need to have surgery in any case just to fix the bladder fistula, which I would probably welcome at this point, with the only exception to that feeling being that I am trying to get started at a new job here very soon and am anxious about the time frame for recovery.  On the plus side, this particular location is notorious for taking a long time to "get in the system" (goodness knows it has already taken me a month to finalize everything, though I am expecting my offer this wee), so I am praying that it will take just a little bit longer and work in everyone's favor!!

I also had a meeting with my neurologist this week.  I mentioned my struggles with spasticity, which have been particularly bad this last year (remember the foot attack at the Safeway incident?)  So, she put me on Gabapentin.  I'm slowly tapering that up, but probably won't take a huge amount as I am not really in need of that much of a change to be honest.  Though I have not had the "eek I am about to have a spasm" feeling for the last few days since taking it, which is great, because I had three incidents of it in one night less than a week ago!

My neurologist was none too pleased that I was unmedicated for so long.  I know that I made that decision for two reasons - 1, I couldn't afford the Gilenya with my Kaiser insurance for some reason, and 2, Steve and I were thinking that we might have a baby again this year.  So being unmedicated made sense, as long as nothing bad happened between now and August.  Well, that clearly did not happen!  So she talked me into getting started with the Copaxone generic, called Glatopa, which is a daily injectable.

OY.  I did it tonight, and man, this one hurt.  I remember doing the subcutaneous injections with the Acthar years ago, but don't remember anything hurting this bad.  I do recall one side of my abdomen hurting more than the other, and I feel like the left side was the better side, but I could be wrong and will need to go back and look.  But it's been two hours since my injection and the site is still pretty painful.  I am glad I did not get the heart-shattering, painful, "sense of impending doom" that some people get with this, haha, but pain is still no fun.

I will continue to update, and might give a video about doing the injectables one of these days.  The best highlight of my weekend was a new baby - - I brought home a 2 month old ball python.  I love her so much!   Her name is Kaa.  I haven't had a snake in years, and I just adore them.  2 year old daughter had a healthy sense of hesitation regarding the snake, but warmed up when we were putting her away - let's hope they grow together to love one another :)

Love to all,
MSloan

Where the Boat is Floating Now

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

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

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

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

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

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

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

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

WTF?!

It didn't work.

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

The bloody stuff didn't work.

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

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

What a bloody nightmare.

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

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

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

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

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

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

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

MSloan