Saturday, October 31, 2015

Baby Blanket

I started a baby blanket last night!  Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down!  I had just enough energy to take my prenatal and crawl into bed.

Where I proceeded to lie awake for several hours.  AUGH!  I can't be alone in this.  I feel like a Nirvana lyric.

I did, however, 'wake up' this morning and went for a walk to the local donut shop.  Cake donut with sprinkles - mm!  I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day.  I have never been successful at putting on weight when I want to.  Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.

My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery!  I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet.  It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again.  Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!

Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.

Enough for now, back to crocheting and watching "Moonrise Kingdom."  I love Wes Anderson movies, don't you?  Over and out -

MSloan

Thursday, October 29, 2015

Feeling Low

Sometimes I feel like I'm climbing a mountain with no summit and no oxygen.  I keep climbing and climbing, but I just can't get there.  I am frozen with cold.  I can't feel my feet.  I can't feel my fingers.  But I keep climbing anyway.

What am I doing this for?

Looking in the mirror lately is just that much more difficult.  I'm breaking out and the acne won't stop.  My hair is a disaster.  I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now.  I am not gaining enough weight, which is stressing me out.  The stress makes my MS worse.  That stresses me out even more.  So I don't eat, because I'm stressed, and have no appetite.  So I'm not gaining enough weight.  Which stresses me out.

Forget the mountain.  I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.

I asked him to do a single thing, load the dishwasher, three days ago.  He keeps telling me how tired he is.  I am trying not to be insulted.  But then he mentions it again.  Talks about it when he's home from work.  Complains when he gets up in the morning.  "I'm tired."  I'm sorry you're tired.  I'm pregnant and have MS, work full time, and then have to take care of this house when I come home.  You stayed home for 2 days this week and cleaned not a single inch of this apartment.  We BOTH live here.  Why is it only my job?  I don't complain about being tired any more.  I have been tired since February 2014.  I've been exhausted beyond belief for the last three months.  I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off.  Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.

So you're tired?  Climb the damn mountain.  You'll know the real meaning of exhaustion then, too.

Sorry.  I know he's doing his best.  I can't fault him for everything.  But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them.  I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone.  AGAIN.  To clean and take care of the house.  AGAIN.  How the hell can I start nesting if you won't help me?  I can't keep up.

I'm tired.

MSloan

Monday, October 26, 2015

ChatMS - 10/26/2015

Tonight's ChatMS was all about intimacy.  I appreciate all of your support and participation, feel free to comment or copy/paste for your own blogs!

....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy? 

I'm married and generally very open.  I rate at a 5!

Q2: Many people have different definitions of intimacy. What does it mean to you?  

Intimacy to me means the ability to open up to a person in more than a casual or surface manner.  It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart.  It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.

Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?

Yes - a few.  I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it.  I had some more sexual dysfunctions as well, which I will address in later questions.

Q4: Have you and your partner discussed how MS can affect Intimacy?

 Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship.  We had to really buckle down and decide if we wanted to have children.  It meant I had to breach the subject with a few friends - and I mean few.  Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.

Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this? 

Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex.  I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.

Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?

 The biggest one was an effect on my orgasms.  For me, a climax affects my entire body - it isn't just localized in one 'place.'  Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience.  When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it.  I was terrified that it would ruin our intimate time together forever.  Thankfully, that ended.  Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.

Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?

 Just like anything in a relationship, communication is key.  I have to be honest with my husband about do and do not feel ready for.  I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants.  It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.

It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else.  Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!

Keep the conversation going!  Participate weekly in #ChatMS on Twitter and FB!
MSloan

Sunday, October 25, 2015

About Something Else

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

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

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

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

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

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

What... what do I do?
MSloan 

Saturday, October 24, 2015

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

Thursday, October 22, 2015

MS, Real Life, Real Support, Real Fear

Did I say I was done for the night?  I lied.  I have another thing on my mind that is really grinding me.

Today I had lunch with my coworkers.  We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things.  It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.

I feel like that's how my illness is treated.  It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away.  My illness doesn't have me, but I own it.  I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer.  I am proud to be a relatively healthy voice for MS.  I am not ashamed of it.  But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it.  Because at the end of the day, no one wants to talk about it.

I talk about my MS at church a lot, because I feel like it's a safe place.  I can't be denied a calling because of my MS.  Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?

In my job, however, that is not the case.  We know full well what might happen to someone with MS.  I am an "ADA Risk," and many people might consider me unemployable.  So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job.  I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis.  It is scary, unfair, and makes me worry for my future.

Today at lunch, I felt more lonely than I've felt in a long time.  I'm pregnant without a mother.  My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it.  My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about.  He can't say much about it anyway, so I guess it is almost preferable.

But at work, it's more of the same.  More questions that make me feel like they think I'm faking a mythical issue from long ago.  A quick inquiry here, another there, but silence the rest of the time.  They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that.  When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.

No questions.  No real emotion.  Just surface, because it makes everyone uncomfortable.  I didn't tell anyone that I was dying, that I had cancer, that I was incurable.  I told them I couldn't feel my feet and it had implications about my stress level.  Hiding how I'm feeling only increases that.  Makes me feel self-conscious.  It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.

What I'm trying to say is, more concisely - this is a condition of loneliness.  Outside of other people with MS, it's impossible to describe how you're feeling.  Impossible to get other people to understand.  I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.

I know no one gets it.  I just ... wish they would ask.
MSloan

And it goes around and around and around -

Well, I have an MRI scheduled for Saturday morning, bright and early.

My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.

That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.

I am not gaining enough weight for my pregnancy.  I know I am very stressed out, and I am worried about what that might do to the baby.  I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.

Le sigh.  But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!

I did a lot of reading today on what drugs might be viable during pregnancy.  I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to.  I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse.  I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.

For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal."  WOW.  What a freakin' word.  Definitely not doing that one while I'm pregnant.

I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday.  Keep your fingers crossed that I'm wrong and the MS is still sleeping!

MSloan