One Little, Two Little, Three Little Follicles...

I fear I'm becoming a produce stand.

That's right, I'm basically walking around with two little bunches of grapes in my pelvis.

Today is Treatment Day 10, and I thought we would all enjoy a mid-stimulation check in.

I've been encouraging the growth of my ovarian follicles with injectable hormones for a week and a half.  My drug protocol is actually a little light, as I only have to do injections once each day (happy dance).  My regimen started with two medications to encourage many follicles to grow and a few days ago we added a third which prevents me from ovulating too soon.  Most days this past week I've headed down to my doctor's office before work (51 miles round trip - the things we do for quality healthcare) for monitoring consisting of blood draws to check hormone levels and transvaginal ultrasounds to measure and count my follicles, which I call "potential baby bud roll-call".  This means I've been stuck 32 times so far - 12 times for Follistim, 10 times for low-dose HCG, 4 times for Ganirelix, and 6 times for blood draws.  

I am happy to report that at this point, things are going quite well :)  Yes, that's right, this little Sjoggie actually has something going right!  These moments are few and far between so when I get one, I like to celebrate by high-fiving myself.  But that's besides the point.

What do I mean "things are going right", you ask?  Good question!  Here are some things that are on target or even better than average at this point:

• I'm developing a delightful number of follicles - one of the clinicians told me she sees on average about a dozen follicles total for a patient, and I have 10-12 on each ovary right now.  They won't all yield a mature egg, but in this case more is basically better, and I don't have so many as to pose any significantly increased risk of OHSS (ovarian hyperstimulation syndrome).
• My follicles are generally growing at a consistent rate - sometimes a couple overachievers will get plump very quickly, leaving the rest to play catch up trying to grow mature eggs, but mine have mostly grown at around the same pace which is great because it means it's easier to tell when we should trigger to maximize results.
• My uterine lining is on target - I'm not doing a fresh transfer so this isn't particularly important right now, but I am relieved to know that my lining is thickening to a good level.  This will be important when we do transfer in a few months, because you need a plush lining to give a little embryo or embryette a good chance of implanting happily.

At this morning's visit, my potential baby buds were measuring around 17mm (give or take, there's a range of course), which means we're getting close to retrieval.  

In addition to these objective ways of seeing that the cycle is going well, I am also happy (if a bit shocked) to report that I'm generally feeling pretty solid.  I'm only slightly uncomfortable from the feeling of my plumped up ovaries, which do resemble small bunches of grapes.  For me, it's this general sensation like full kidneys, and I'm more aware of it during the movements to sit down or stand up.  Of course, it's pretty likely I'll feel increasingly uncomfortable in the next few days but so far, so good!

I have had one problem crop up in all of this.  The day after my first round of shots, I had a full blown migraine.  Never having had one before, I didn't know what was going on but after talking to the doctor and reviewing all the symptoms that occurred, that's clearly what it was.  It started with a visual aura - I describe it as being like when you look at a camera flash, except the perimeter of the "blur" almost looked like tinsel, sparkly and irregular.  The "blur" began to expand and before it was over (about 20 minutes or so) it did obscure a good section of my field of vision.  While this was going on, the headache hit (I have a history of cluster or "suicide" headaches so this wasn't the worst part to me, the aura scared me the most), and eventually I had some nausea.  These "sudden onset migraines" are not uncommon with all the hormones and medications, but no one warned me about them either.  On the upside, except for a lingering headache the next day I only had one more migraine begin a few days later, without aura, and taking an excedrin when I felt it begin did help keep it from progressing.  Again, I'm not out of the woods yet but I am hoping that it was more of an adjustment issue and the worst is behind me in this respect.

So what happens next?  Another excellent question!

Each day that I go in, the office calls me a few hours later once the labs come back to tell me if there are any changes to my medicine protocol (there haven't been so far, which I think is a nice indication that my doctors did a good job figure out where to start, but for the record tweaks are absolutely normal because no two people respond exactly the same way).  One of these days that call will also tell me to take my trigger shot that night.  36 hours later, I'll go under IV sedation for retrieval.  The clinicians (and I) suspect they'll tell me trigger tomorrow (for Wednesday retrieval) or the next day (for - you got it - Thursday retrieval).  The day between the trigger shot and when we go egg hunting I get a short reprieve with no more shots.  That will be nice, considering my belly is starting to look like one of those tomato pincushions everyone's grandmother had after it's been stabbed a few hundred too many times.  And did I mention Ganirelix burns for a little after it's injected?

Granny's pincushion or my abdomen?

This is where we're at in the IVF leg of our infertility journey.  The day we have egg retrieval (and incidentally, every time we discuss that I feel like a giant chicken on a farm) we will find out how many follicles were drained and how many mature eggs were actually retrieved.  They'll inject each one with one of my husband's sperm overnight and the next day we'll know how many successfully fertilized, then we begin the highly distracting phase of waiting to see how many grow to blastocyst stage over the following 5-7 days.  Better buckle up, kids, we're just getting started!

Non-Traditional Mothers' Day

Happy Mother's Day, from the bottom of my heart.
To my mom, to the moms in my family, to the moms I'm friends with.
You know how blessed you are to have your kids, and that's one of the reasons in itself that your kids are blessed to have you.

Please post pictures of your handmade, glitter-covered cards, 'check in' from restaurants you're at, and tell the world how much better your life is for having your kids.

Please understand why I won't be hitting "like".
Why I may not even read the posts at all; may scroll right past the pictures.
Understand that it is how I have to take care of myself right now, and not my way of making you feel guilty or casting a shadow on your celebration.
If I didn't think those things were worth celebrating, I wouldn't be working so hard to have them in my own life.

Understand that I am already living much as a mother: getting up at crazy hours to get to daily appointments, stressing over how to balance work obligations with my family priorities, and thinking every day about my someday - children's welfare (not to mention existence). I even endure physical aspects, but instead of labor pains and a strained back mine are injections, anesthesia, surgery, vaginal ultrasounds (which are not exactly as "non - invasive" to me as a woman as medicine wants to label them), body - wide side effects of hormones, and exercise limitations.
And yes, not unlike children themselves, infertility can totally screw up your sex life in ways you may have never imagined. For people like me, it is not in any way "the best part of making a baby".

Understand that in my journey, I am still hopeful.
If I wasn't, I wouldn't be continuing to go through the things I do.

Understand also that for many women, THAT BABY WILL NEVER BE.
IVF doesn't always work, even adoption isn't always possible or may be an option some people do not want to take.
Understand that childfree is a choice for many, a default for some, and that I am quite reasonable in my fears of it happening to me.

Understand that telling us "it'll happen someday" is not helpful; "I love you" is; "I'm sorry" is; "I pray for your happiness" is.

And if you are so inclined, share my post as I have shared the posts from my friends who are also non - traditional moms on Facebook today.  Use the social media network of your choice.

My post is complete with pictures for my lost baby- the ultrasound of my daughter Grace when she lived so briefly within my womb, and where she now lives represented by a mustard seed tattoo and eternally in my heart.

2015 Sjogren's Walkabout

Team UII at the Philly SSF Walkabout

At last it's here, it's finally SPRING!

What fun and joy will this season bring?

There's flowers and sunshine, and lots to do.

But the most fun of all will be at the Zoo!

So check us out and join our team;

The funds you help raise will support our dream -

To live a life where we more than cope,

Where we laugh and love and are filled with hope!

What: 11th Annual Walkabout for the Sjogren's Syndrome Foundation

(This is my fifth year on the committee for this event!)

When: Saturday, May 2 - Registration opens at 8:30; step off is at 10:00AM

Where: Philadelphia Zoo (for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)

How: Donations can be made online or by contacting me.  Qualify for FREE ENTRY to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)!  

For details on earning FREE entry and how to make donations, visit my team page at here: 

Team UII - Understanding Invisible Illnesses! 

Please remember to invite your friends and family!  You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc.  Or, sign up for the walk and send your personal page around!

What is Sjogren's?

Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood.  In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue.  While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body.  It is chronic and progressive, meaning there is no cure and it will usually get worse over time.

But the SSF (Sjogren's Syndrome Foundation) is working to change all that.  The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter.  They also:

• Provide resources to patients, family, and healthcare providers,
• Host an annual Patient Conference,
• Publish materials,
• Raise awareness among the healthcare community to drive interest in this pervasive disease, and 
• Fund research into effective treatments and possible cures!

The Philadelphia Walkabout is the Foundations largest fundraising event in the country!

Sjogren's By the Numbers:

• An estimated 4 MILLION Americans have Sjogren's
• 9 out of 10 patients are women (though both men and women can develop the disease)
• Sjogren's patients are at a 44X greater risk of developing Lymphoma
• Sjogren's patients need an average of 50 TIMES more dental work
• The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)

Learn more about Sjogren's and the SSF at www.sjogrens.org. 

What's It All About, Anyway

We have a lot of expectations in (and of) this life.  

For many of us, those expectations include having kids and building a family.  Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum.  At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one.

This is your first glimpse into how my brain works, isn't it.  Yes, I think in flowcharts, lists, and graphics - so what ;)

That was pretty much how I thought it went for most people, for quite a while.  It was my impression growing up and through the first several months of trying.  But maybe a year ago, I began to learn that a whole lot of people - including us - have to consider a few more things.

Oh yes, for those of you who may not have had the opportunity to explore things at this level, it's just a bundle of fun.  I'd like to add that the monitoring accompanies just about all parts of this process, unless you're fortunate enough to sustain the pregnancy and graduate to abdominal ultrasounds.

But what happens when it doesn't work?

This is when the questions start that have no answers, such as what method is most likely to be successful?  Or the most painful question, why?  And one of the hardest - what does moving on mean for me?

It's within this last box that I've been living.  What do I do now?  Do I keep trying?  If so, which methods are open to me, and which can I handle?  What if I run out of options?  What if I simply can't handle this same path anymore?

And most recently we've confronted the question of what's it all about anyway?  What is it we're really after and why?  It is these answers that are setting us on our next leg of the journey.

Shawn and I are seriously looking into adoption.  But as we discussed today, it's not because we've exhausted everything else, that we think this is the "only way" to have a family.  And we don't care for it when people act like that's why we'd make this decision.  We are genuinely excited at the prospect.  Bringing someone into our family through this process is going to be a great, if trying, experience and this new aspect of how our family will unfold gets us going.  The way we see it, I have other options.  I can continue the treatments I've been doing, for instance.  But the other day I had a realization.  All along I've wondered if I "should" have kids, knowing what I could pass on, and if that's a reason at a bigger-picture level for why it isn't working.  What if the issue isn't so much - or entirely - what I could pass on but what the process might do to me?  Once you get into the heavier treatments, you put your body through a LOT.  Otherwise healthy women struggle with the chemical manipulation, physical restrictions, and side effects of the treatments on their bodies.  You have to trick your body into doing things, even into thinking it's pregnant so it won't reject the baby.  As someone with my kind of complex history, how will my body endure these experiences?  If I do manage to successfully "fake it 'till I make it", I'm almost guaranteed to have a major flare afterward, and as we all know we can't predict the lasting effects of these experiences.  What could this do to me as a mother?  And what would it do to Shawn as a father if he had to care for a new baby and me at the same time?  What if this is really about my ability to raise my children?

What's it all about, anyway?  Why do we want to have kids?  Because we want to be parents.  Once in a moment of guilt I told Shawn I feared how he might feel if I was the reason he couldn't have kids and he pointed out that he didn't marry me just to HAVE kids, he married me because he wanted to be parents with me; it was so we could RAISE kids.  For us, it's all about the family we'll have and not so much about how we have it.  

For as old as I generally feel and while it's true my body is not a typical 28 year old body, when it comes to the fertility world I am still young.  We could get five years down the line, decide we still want to try for a biological child, and have time to work with.  Adopting in no way closes any doors at all for how we'll continue to build our family.  But continuing with treatments right now no longer seems right.  We're not closing any doors - we feel that if I were to get pregnant naturally at this point it would indicate to us that my body would equipped to handle it and we'd welcome that - but we aren't going to try to force it for a while.  But it is still the right time for us to begin raising kids, so we're turning to the adoption world, and couldn't be more excited.

This is an incredibly personal decision, and I absolutely expect that you will each have your own opinions and answer for what it's all about to you.  I completely respect your decisions and know I can count on you to respect ours.

Meat Loaf and I Lay Down the Law

I know I haven't posted in what feels like forever.  I pretty much stopped posting in the spring of 2013.  That's when two things happened - I switched jobs, leaving KPMG where I had been for close to 4 years, and I start trying to have a baby.  Let me summarize for you:
~I worked for the place I went after KPMG for 10 months then switched jobs again - I found something in my field and close to home and was very happy to make the change.
~Shawn graduated college and began working as a nurse.
~I was diagnosed (over time and 3 doctors) with PCOS, Endometriosis, and damaged "fingers" on my fallopian tubes.  I had surgery, take new medicines (which helped me drop 40 pounds), am learning all about the "joys" of fertility treatments, and just this week had a miscarriage.

To be fair, I can't tell you if I'm back for a while or if this will be a one-off post.  I just can't commit to anything one way or another right now, and I know you get that.  But my recent experiences have brought a post out of me that I simply NEED to write today, so here I am.

I'm not sure how often I can say I've turned to Meat Loaf for inspiration, but I've hit on pot, Mater from Cars, and Ewwy Gooey the Worm before so why not.  Nothing's off limits on this blog, right?

In the "golden age" of music that was the 1990s, we were graced - and sometimes assaulted - by many novel artists including Michael Lee Aday, or Meat Loaf, whose first single to hit number one on the Billboard Hot 100 chart was "I'd Do Anything For Love (But I Won't Do That)".  Today this is was my inspiration.  Infertility and miscarriage are hard topics, and I don't even know what to say let alone what other people should say.  But I do know some things that just shouldn't be said at all.

You can tell me anything you want,
That you've been there too or that you've got my back,
Yes you can tell me anything you want,
But just don't say that.

I'm sorry to take the negative route with "don'ts" but sometimes you just have to.

Please, whatever you do, just don't say:

(For infertility)

• You'll be pregnant in no time.
• Oh good, you have that crystal ball I've been looking for!  Oh wait, that's right, you don't.  You have NO WAY of knowing if this is true, and while it seems benign on the face, it can be caustic to a person working through infertility.  In my case, this riled me to no end because I knew my body, I knew my medical history, and I knew it just isn't usually in the cards for me to have an easy time doing anything.  I knew in my heart of hearts it was going to be something of a struggle, and this platitude can't be said without being patronizing.  Additionally, if someone has been dealing with infertility for a while already, this is just plain old stupid.
• Just relax.
• You can encourage me to redirect my thoughts so I don't become consumed, you can even remind me it won't help to get worked up.  But we're talking about having a baby, the biggest thing that will likely ever happen to any one of us, and it SHOULD be a big deal.  You really want to be my friend through this?  Ask me to do something with you that will take my mind off of it.  Your actions will do far more to help me "relax" than anything you might say.  Not in the area?  Give me a call or send me something to read.  Schedule a time with me where we'll watch a movie at the same time and discuss it.  But don't use the "R-word".
• If it's God's plan, it will happen.
• Here's one that toes the line a little.  Yes it's all in God's hands and I believe that (though be respectful if you're dealing with someone who doesn't - this isn't the time to bring them to God) but this one uses the shortest scary word there is: if.  I just don't want to acknowledge that there's an 'if' about this.  Believe me, in the back of my mind I know it's true, but I don't need you bringing it forward.
• Your child needs a sibling!
• WHY would you say this?  This is directed toward the person who has a child already.  They're dealing with infertility (or could be miscarriage too), the last thing they need on top of the stress and anxiety and inherent guilt is your added guilt.  Do you think they don't know that their child is continuing to grow up while they're working on another kid?  And furthermore, whether they give birth to another baby, adopt a child, or raise theirs as an only child, what business is it of yours to say anything?  Just do not add your two cents unless explicitly asked.  Period.  The same goes for telling someone without kids that time's ticking or their parents would love to be grandparents.  Just don't.

(For miscarriages)

• At least you know you can get pregnant.
• Where do I start with this one?  A) personally, no I do not know I can get pregnant again.  Every medical roadblock I had from the beginning is still there.  This statement is incredibly dismissive of my experiences and my fears.  B) even without my medical history, no woman can be sure she'll conceive.  C) this does NOTHING to diminish the hurt of losing a baby already conceived.  If your five year old was hit by a drunk driver, God forbid, would you be soothed to know you were capable of conceiving and giving birth?  Absolutely not.
• You'll be pregnant again in no time.
• See above.  In addition, this ignores the possibility the I may need time to grieve and compose myself before trying again - or even making the decision of whether to try.
• It's for the best.
• Are you kidding me?  Moving on.
• There's always adoption.
• This one is only a "don't" for timing.  This is true, and many many people will take this option (whether or not they keep trying for a biological baby as well).  I also commend you for letting me know you'll be supportive if I take the adoption route.  But knowing I could remarry wouldn't make me feel better about losing my husband; knowing I can still have children in this way doesn't make me feel better about the baby I don't have anymore.
• At least you were only a few weeks along.
• Since Toby from The West Wing gave voice to the words in my head, I'll quote him: "Pregnancy is a binary state.  You either are pregnant or you're not".  I was pregnant.  A day, a week, or 8 months, I was pregnant and now I'm not.  And I'll go you one better.  This wasn't a positive home pregnancy test followed by a period, I had weeks of positive blood tests and several ultrasounds.  I saw the baby's heart beat.  

These are the "do not, under any circumstances" items.  In my opinion, there's also a "tread lightly" list - things that might go over well or might cause a meltdown.  If you want to say one of these things, consider how well you know the person, maybe how long it's been since the miscarriage (if that's the case), etc.

• God has a plan.
• Leave out the "if" discussed above and any superfluous preachiness (such as "and His plan will be so great it will heal this hurt"), and this one can work.  It will probably be best received by someone who feels a spiritual connection already but might be ok for other people if, again, you leave the preaching behind.  This can also be worked well for someone who's feeling guilt, to remind them that they aren't fully in control of this, God is, and He does in fact have a plan even if we don't understand it yet.  However this probably shouldn't be the first thing out of your mouth.
• I think it will work out for you to be a mother, but I know this sucks right now.
• For the times you want to be the voice of hope without incurring a knee-jerk reaction, this one's pretty good.  It gets your point across - "it'll be ok" - while respecting that the here and now is horrible.  It also subtly tells me it's ok to be hopeful even while grieving which is a surprisingly confusing thought to someone going through a miscarriage.
• Do you want to talk about it?
• Personally, I usually respond well when people ask me questions.  It helps me process, organize my own thoughts, and most of the time that's how I come up with my own plans.  And if I don't feel like talking about it, I'll just nicely tell you that (ask me again at your own risk, though).  But some people won't appreciate specific questions, so you may want to outright ask them if it's a good time to talk about it or not.  Or offer "do you want a distraction right now or do you need to process".  Basically asking before doing is probably good.

It occurs to me that in almost every case, the reason these things shouldn't be said is because they are dismissive.  People need their thoughts, fears, feelings, hopes, and concerns validated.  Even if a specific fear is unsubstantiated (which is many times a matter of opinion), you can provide someone with facts about the topic without brushing off the fact they are afraid.  Hell most of the time if a fear really is unfounded, we know that, but we fear it anyway.  Telling us to simply not be afraid makes us feel alone, stupid, and still scared.

So what can you say?  I've been thinking about this too.  Again this is really hard, and I'm definitely not going to suggest there's any specific thing you SHOULD say, but there are some things that I felt worked well.  But be thoughtful - even more than with the "don'ts" and "tread lightlys" above, the "dos" can be extremely subjective so know the person you're talking to.

• I'm praying for you.
• You're not asking me to do anything, you're simply telling me you're doing this for me.  I like that.  Also IMO, it doesn't matter what the person's beliefs are for this one, because you're doing the praying.  Even if I for some reason didn't believe it would work, no harm done, right?
• Can I pray with you?
• IF you know enough about the person's spiritual life, you'll know if this is a good idea.  But please be prepared to do the verbal praying, don't expect me to say anything except maybe amen.  And if I've already lashed out about why God "did this", maybe skip this one for now.
• I've been there too.
• For me, I'm already aware a lot of my friends have been through miscarriages (though seemingly few of them have had trouble conceiving like me, but that's another story).  I also knew posting about mine would bring out more stories, which it did.  But it seems most women don't know people have been through this, and certainly don't know who around them has.  You probably don't want to then launch into a directive of "how to cope" but using the first person you can share your story - "I was completely numb about it for a week; I gave myself two months of not even trying afterward; I broke every plate in the house and passed out from crying".  Good or bad, your reaction was real and it will help me feel more sane for whatever I'm feeling.  BUT, please do NOT say something like "I had two miscarriages but now I have my kids and everything's great".  I'm not at "everything's great" yet, so stick with something more moderate like "you get through it, please know you can talk to me if you want".
• Let me know if you would like any resources.
• Many people in my world have resources at the ready - my boss suggested a book other women she knows recommended for miscarriage, for example.  Support groups, websites (BE SURE to proof them first to make sure they have the tone you want your friend to see), books, personal connections to someone else who's been there.  If you don't happen to have a rolodex of resources handy that's fine, some quick Googling or Facebook networking will work wonders, and someone in my shoes might appreciate not having to do the digging themselves to find support.  I guarantee (sad as it is) that someone you know had a miscarriage - if you can find that person they will almost always agree to talk to your other friend.  Just don't reveal your friend's identify even if they've "gone public" themselves - no one wants to be broadcast on the web.
• There's nothing wrong with you for feeling like that.
• Whatever I'm feeling, whatever I'm doing to grieve or cope, tell me it's not wrong.  If we're talking about this, I'm almost guaranteed to say something about feeling like it's bad that I'm running errands or that I don't want to try again or that I want to try again right away or something.  I'm going to think I'm doing something that's night right or at least looks not right.  Tell me I'm fine.  Even if you don't understand it, go out on that limb and reassure me I'm not a bad person for it.  

Don't exclude your friend - keep inviting me to showers and first birthdays - but give me an easy out if I'm not up to going.  Sometimes I need to avoid the subject but I also want you to know I'm still your friend and these are the things going on in your life.  So give me the option without the guilt if I say no.  Give me a hug.  Offer to help me if you can - offer to drop off food, take me to an appointment, drive me home.  Be specific so I don't feel like I'm asking too much, or so I can say no thank you.  Care about my spouse too.  Let us know you realize we're both hurting.  We're having enough trouble supporting ourselves and trying to be there for each other, so we can use whatever support you can provide.

And thank you for reading.  Because honestly the BEST thing you can do for me right now is to avoid making me hurt more.

St. Mary Magdalen Church 2013 Christmas Concert

This song, "I Was Touched and I Believe", was my favorite of all the songs we performed at my church's Christmas concert this year.

Yes, I have joined a choir.  The last time I sang with a group was as a college sophomore, 8 years ago.  The reason I stopped for so long?  Damage caused by Sjogren's-induced dryness.

Which, at least to me, makes this that much more of a surprise, and a miracle:)

Anyway, I loved this song because it had a beautiful harmony (I sing alto), and the lyrics were just so amazing...
I believe the little child born of Mary, meek and mild, came to touch my aching soul, and by his touch has made me whole.
What's not to love!

MERRY CHRISTMAS AND HAPPY HOLIDAYS!  Best wishes for whatever winter celebration brings you together with your own family, friends, and passions!



(Video is an excerpt from the concert recording by Jon Dorfman, permission is granted to share with proper credit and citation.  Read more about Jon's work at his blog http://aspieepilogue.wordpress.com/)

Empathy: The Human Connection to Patient Care

To all my activist, patient, caregiver, and professional friends, this is something worth a little more than four minutes of your time. 

I'll leave it to you to take from this what you will, but I can say that to me, a patient, it said "SOMEONE out there has their priorities in order, and is trying to teach that to everyone else", and that's extremely comforting.

If you're up to it, leave a comment on this post with your reactions!  I'd love to see what a little crowdsourcing could accomplish with this striking kickoff.

Weeds

Snazzy pot pic found for free, here.

No, not that kind, silly!  Geez, what do you take me for, really?

Although, while I've never tried pot myself, as it is slowly becoming legalized in more states across the country (and is already in use in other countries around the world) for medicinal purposes which may be relevant to our UII community, perhaps it will bear further scrutiny at a another point in time.  I may need to find a subject matter expert on this, though.  Hm....

Anyway, no.  I'm not referring to reefer.  I mean the regular old garden-variety weeds (ha, yes, literally in my garden!) which have overrun my home.  In case I forgot to mention it when I started to blog again this year, we bought our first home at the end of December and until now, I never had much of a garden.  I was aware I don't have a green thumb; in fact I think it's downright brown.  I've frequently joked that when they see me coming, houseplants simply die of their own accord to save themselves from suffering at my inept hands.  (Hey I didn't say I was funny, I only said I try to be.)

Then we bought this house.  With roughly a half-acre of land.  And lots of trees, and shrubs, and bushes, and   over a half-dozen flower beds depending on how you count it.  Which abuts an arboretum next to a state park, further fostering the spread of indigenous flora.  Oh my.  At settlement, the sellers told us a bit about all the planting they'd done and how they picked some varieties specifically for certain reasons, yada yada yada, leading me to the conclusion that I would have some impressive blooms come spring and summer and should probably learn how to tend these gardens.  What I didn't expect was that these beds (not to mention the perimeters of the property) appear to be the most fertile soil I've ever seen, as evidenced by the epic proliferance of weeds that have tried to reclaim the land as their own.

That's right, I'm waging war.
Several times already this season, I've taken the largest sheers we have to the front and sides of the house, where the forests of weeds have all but hidden our front door.  My mother in law, who does garden (whew), came over to help me start pulling weeds and thinning the herds of other plantings.  I recall we spent 3-4 hours at it that day and only got about 85% of the way through one flower bed.  We're discovering that there are only a small handful of actual plantings in each bed but the beds have no mulch or anything and are completely overrun.  Speaking of overrun, say hello to the back 35-40% of my property:

Welcome to wisteria gardens...hey, maybe I can make this a destination and charge admission...!

Because what does a beginner (and bumbling) gardener needs on top of hundreds of well-rooted weeds in her flower beds?  Why, a yard full of very mature wisteria of course!  Let me just add, when these vines intertwined in all the trees and shrubs burst forth with these somewhat grape-scented clusters I took to the Google machine and found out what wisteria actually looks like.  I believe this is Japanese Wisteria which, as you can see, has made an impressive climb into these tall trees across mine and my neighbors' yards.  It is beautiful and I don't want to obliterate it altogether, but holy shnikes people, this is a bit much don't you think?!  Oh, and amid the low-lying vines, there are other shrubs and plants and ... dun dun DUN ... poison ivy.  Which means these two little homeowner newbies aren't going in after the vines on our own.  We're thinking of waiting until the fall when it all starts to die down for the season and hiring professionals to hack it back.  Which of course puts images of machete-wielding treasure hunters in my head...

Another amused gardner commented about the use of machetes, here.

(((Shakes head))) Enough of that!

With all of this in mind, I celebrated our nation's birth on my day off Thursday by venturing out to one of my flower beds to claim my independence from these tyrannical weeds.  To guard against excessive sun exposure, bugs, and contact allergic reactions, I donned long jeans, a long-sleeved t-shirt, and my UII baseball cap, and still only got in about 45 minutes of work before the heat was too much.  I was fairly impressed with myself, though, because I took on the absolutely enormous tall weeds along the side of my garage.  You know how they tell you to lift with your legs and not your back?  Apparently I follow these rules, including while pulling weeds, as evidenced by my strungout hamstrings and bottom muscles for the last day and a half!  I also somehow managed to get six - yes, SIX - bug bites on my shoulder blades (THROUGH my shirt) and two on my FACE in that space of time.  For comparison's sake, I haven't really been bitten at all while sitting around the firepit in the evenings.  Seriously?!

My approach to my weeding has been simple - if it looks like a weed, or I simply don't like it, it comes out.  I realize some of the things I'm pulling may be intentional plantings, but I don't like them and there's far too much going on out there!  And after all, it's MY HOME, so it's my choice:)  (That never gets old, haha.)

But I also made one exception.  As I go around yanking and yoinking, I skip over the clover.  I know they're technically weeds too, but it's this cute kind of clover, growing only in small clusters in the beds, and just as I can arbitrarily rule that some non-weed must go, I can dictate that this weed shall stay!

Cutie pies found here.

Besides, in the otherwise unpleasant task of weeding where I see things I don't like (worms, beetles, spiders, ick blech ack ugh), I get a peaceful satisfaction from scanning the surprise clover patches I uncover for that elusive four-leafer.  Haven't found one so far, but I keep looking.

And afterall, I reminded myself, you can't find a four-leaf clover if you pull all the weeds!

I just love it when I sneak a little wisdom in on myself.  Kind of catch myself by surprise, and am reminded of things bigger and greater and grander than me.  I can play demi-god with my flower beds, but ultimately it's not up to me to determine which things should stay and which should go in life.  There are a lot of weeds in my world and in my past, but if all of the negative things went away what kind of person would I be?  I'd have no drive, little ambition, no sympathy, and no purpose.  I'd likely be alone, having run off Shawn and any other worthwhile companions either through my coldness toward others or my blasé approach to life.  Perhaps I'd be living with my parents or worse, in deplorable conditions, never having been inspired to manage money.  And I certainly wouldn't know any of you without a reason to write this blog.

Maybe I am a four-leaf clover.  Maybe my life is the rare find...what are my leaves?  My gifts, my treasures, my capabilities and blessings that make me unique?

1. My husband and family, who are unique because they give me so much support, and not everyone is this lucky.
2. My business/financial perspective, which helps me maintain some level of stability in my unstable life and lets me dream big knowing the small will be ok.
3. My faith, which I know is something every person has a unique relationship with but I have to acknowledge that for my many sickie peers who feel forgotten, I know I am not.
4. My diagnosis, which underlies everything else.  I need my family's support more than I should because of these medical challenges.  I crave stability for many reasons, including as a counterbalance to the uncertainty about my medical situation even from day to day and over time.  My continued faith is, to some, surprising given the unpleasantries of being diagnosed with a chronic illness in my teens and the chronic challenges that come with that.  

To come full circle, this is my weed.  Without it my life may be cute like the three-leafers we see above, but nothing special; with it, I feel like a rare find:)  And don't think I don't "get it" - I don't think we should necessarily pretend we enjoy the weeds, but we do need to take that step back and look at the whole picture sometimes.  I think it's those moments when we think "just when something was going well, this weed popped up and spoiled it" when we're seeing our fourth leaf and just don't know it.  Keep an eye out for those times that show you how rare a find you are too.

You Don't Say

As some of you may know, I recently started at a new job.  Yes, that's right, I've moved out of the world of the frazzled auditor and into that of the in-house accountant.  My new coworkers are very nice, and I get to be part of some process analysis and revisions which are very exciting to my inner dweeb.  But the best aspect so far?  I leave every day before 5:30!!!  That's right, I'm bragging:)  (Ok yes there will be critical times when I have to stay 'late' but that's part of the biz, and late here will mean 6-7ish.  Holy mackerel.)

I've come into the team as a Senior Accountant, commensurate with my experience and the need to complete my CPA (yeah...that didn't die).  The same day I started, another new hire from a different Big 4 firm came in as an Accounting Manager (he had been a manager at his former firm).  I think we need a nickname for him...hm...let's call him New Dude, Too (NDT for short).  NDT and I have found that it was beneficial to start together because we can relate to each other's backgrounds and help each other transition to our new worlds.  None of our direct peers and few of our extended coworkers come from a similar background, making our connection that much more valuable.

There are aspects of the transition to a new role that I anticipated, such as learning to express myself in ways my new team understands and establishing my reputation anew.  Naturally, there are also things I couldn't prepare myself for, like the different approach a small company has to onboarding and training.  Figuring out how to more autonomously structure my days based on the combination of ongoing tasks and special projects on my plate is a surprising though welcome learning curve.  I realize these types of challenges are familiar to most people, but this is my first job change as an "experienced" hire so I find myself marveling at the experience itself!

NDT and I find ourselves on the same page about most things so far.  We like the same people, we note the same peculiarities with others, and ask ourselves the same questions as we learn how the company functions.  Since we are at different levels, we have been asked to take on different tasks, but we've leveraged that too. He's been working on projects related to mapping accounts which he explains to me, and I've been learning the nitty gritty things like how to work parts of the accounting system which I show to him.

I'm aware that as we're each establishing our images with the rest of the company, we are also developing our understandings of each other.  Maybe I'm not supposed to say this, but men at the Big 4 just tend to be more traditionally polite; some might say chivalrous.  They offer to carry things, volunteer for errands, and there are some you will never see walk through a door before a woman.  My observation is a combination of my personal experiences as well as discussions I've had with countless coworkers of both genders.  Perhaps it stems from the emphasis these companies place on classic manners such as which silverware to use for which course and email etiquette   As a pair of X chromosomes, I have to say that this is pretty nice.  It simply makes someone feel good to have someone else take a little extra effort to make their day a bit easier.  And as a clutz with occasional physical challenges, this kind of treatment can really come in handy.  However it's always been my opinion that men don't necessarily OWE this to women, and certainly that women can and SHOULD return the favors from time to time.  I'm just as capable of holding the door for a man or taking a package from an overloaded coworker.  Sometimes it just seems right to take care of my own task or get something for myself, even if it's just for the sake of taking turns.

I suppose this is why NDT made an interesting observation the other day.  It was a particularly nice, warm day and our company has a few tables outside for employees to use as well as a small walking track, and NDT and I like to use our newfound energy and time to make use of these amenities.  On this particular day, we had grabbed our lunches and headed out to one of the tables.  On the way, I offered to hold a door and press the elevator button, but NDT wouldn't let me.  During the ride downstairs he observed "you're a very ... [pause] independent [pause] person.  Like the other day when you wouldn't let me get the chair".

Me?  Independent?  Perhaps to the point of stubbornness?  Tosh.
...Well.  I don't know I'd use the word 'independent'.  Maybe 'empowered' or 'capable'.
...Ok, independent.  But that's a good thing!
...Ok yeah I see your point.

Fr. Anthony Messah describes what's it like to be an "independent-aholic" with this graphic, here.

So I tend to be a bit strong-willed, empowered, enabled, self-propelled...so what?

We could go with an old-fashioned childhood experience psychology here if we wanted.  I have strong, distinct memories from elementary school of teachers asking for a boy in the class to carry a heavy box.  The funny thing was, I was larger and actually stronger than most boys in my class at that age.  I was simply more capable of carrying the box than they were, but the teacher only asked for boys.  I usually challenged the teacher (yes, at the tender age of, oh, 6 or 7 until 11); some would acquiesce and ask for any student capable of carrying the box, but others would still insist to my face that they wanted a boy to do it because it was really heavy or a girl might get hurt.  It wasn't until well into my 20's that my strength began to fade.  I may have always been a clutz and accident prone, but I was also particularly strong in my younger life.  And those memories stayed with me.

But we could also acknowledge the effect of a chronic diagnosis on my will.  My strength as a child was sometimes dismissed, but on top of that it was threatened by chronic diagnoses as a teenager.  It's well established (in my mind) that this was the point when I developed the mindset that I don't know how long I can do any given thing, so I'm going to do anything I can as soon as I can, because I don't know how long that opportunity will last.  Maybe this same mindset led to this "independence".

Or you could ask my parents, who would say I was born that way.  There's a legendary story in my family about the L&D nurse who observed during my first bath that I had a "worried, worried look" and my innate perspective for simultaneously respecting and questioning authority.  I never took any explanation at face value, though I wouldn't exactly violate it until I was sure it was flawed.  It is said I was born middle-aged, with an independent questioning mind and a will that considered other people but didn't automatically agree with them.

And so between a natural inclination, a childhood perception, and an adolescent encounter, I stand before you today, "independent".  This is one of the first traits a new coworker noticed and went so far as to comment on to me directly.  Well, you don't say ;)

Enervated

I learned a new word this morning: Enervated.

Image found on a very cool Visual Dictionary site from Manhattan Prep GRE Blog.  I relate to this hippo.

I was a voracious reader as a kid.  Remember those summer book lists they put out for each grade level, and you were supposed to pick one or two books - depending on your level and just how far the school board had that stick up their collective butt that year - which you would read over the summer and report on at the beginning of the next year?  And inevitably, it would be two days before Labor Day and your mother would be hanging over you threatening not to let you enjoy those last few days of freedom if you didn't read that book already even though you both knew she was bluffing because unlike the school board your mother's butt was stick-free?  I loved those lists.  There were summers where I read the obligatory books from my list, but they had posted the lists publically so I went through the ones for other grades which were always 10 times cooler than my list and read a bunch of those.  One year, I think I knocked out the entire list for two grades.  And yes, I did other things, but no, I wasn't much of an outdoor person and I think in retrospect we can be glad I didn't spend more time in the sun at that age!

Anyway, as a result of reading so much I've always had a pretty respectable vocabulary.  Of all the "nerd" things I did, I never really minded being mocked for using "SAT words" because I liked being able to say precisely what I meant.  But when you're a smarterish kid and go to a smarterish kid college (Villanova) and work with smarterish people in a professional setting, it takes more than compulsory school reading lists to maintain this reputation.  It also doesn't really help that my best friend from school is an English major and my best friend now is a Journalism major with an unimaginable flair for all things peculiar and unusual.  And I'd NEVER want to let you, my dear readers, get bored with my basic and unenlightened language when I write!  I still love to read, but don't have the time to take down the volume of literature I did in the good ol' days, so now when I need a word to make my point or to do so in an engaging way, I leverage the wonder of the internet and hit Thesaurus.com!

So how did we end up with "enervated" today?  Well, all week the husband and I have been trying to take down some household projects which involved a significant amount of time running errands and traipsing through stores to find just the right thing at just the right price as well as drilling, assembling, moving, and arranging several rooms worth of goodies.  I've hung curtains in two rooms and a ladder on the side of the garage, made a truly manic pass or two around the yard with an imposing set of hedging shears, and assembled furniture.  In the process, I learned a few things:

• Sauder brand furniture is gorgeous and of a delightful quality, but heavy (each of our two dressers weighs as much as I do or more) and when they say "assembly required", they ain't kidding!  
• Left in the wrong hands (mine), even a moderate pair of shears can be leveraged to take down several bushes not to mention weeds, overgrown flower beds, and some God-awful plant by the AC compressor.  Also, with shears in hand I feel like a lady Paul Bunyan, felling microforests of weeds with one pass of my blades...but I digress before this gets creepier.
• My favorite weather is that which keeps me in a very mild sweat, and this makes me feel invigorated and up to taking on physical challenges, but also obviously makes it crucial to hydrate myself carefully.  Because of my combination of Sjogren's Syndrome and Dysautonomia, managing hydration levels involves a balance of taking in the right quality and quantity of liquids as well as the right volume of salt at the right times (I use a high sodium diet to avoid Beta-blockers).

And so, after yesterday (the apex of my physical activity for the week as performed on the hottest day) and without having consumed a drop of alcohol, I awoke this morning feeling remarkably hungover.  It took me a few minutes to piece together that it was really straight dehydration.  Guess I didn't quite hit the magic combination and timing of fluids and + salt yesterday after all.  I also went to bed last night with significant arm and shoulder pain from overuse, so at least it wasn't a surprise when that was my worst symptom again today.  

I wanted to come on here, share with you this tale of exertion and dehydration, and describe how my arms feel...but I needed just the right word to describe it:)  Unable to come up with this adjective myself, Thesaurus.com provided this gem:

Enervated: adjective; without vigor, force, or strength; languid.  

Example of use- "He had come in dehydrated, with sunken eyes, too enervated to even cry." 

(How ironic!)

Child, after my own heart, cited as Funny-potato.com but sourced from this vocab study guide.

I think that says it all.  Most of my body, and particularly my arms, are enervated.  I'd love to soak in a tub but it needs to be cleaned first and I don't have the strength to do it right now.  On top of it, my mother-in-law may come by to help teach me to garden (perhaps with a little less destructive yet cathartic abandon) and my Journalist friend offered to hop over and go on a trail walk with me.  I know that when my body feels like this I should really give it a FULL day truly recuperating, but I can feel my energized spirit fighting my enervated body on this one!  Perhaps I can try to limit myself of bouts of activity interspersed with couch-floppage?  I'm sure my friend will be just as happy to veg with me, the puppy, and a glass of iced green+white tea with mint, right?  Cause that sounds mighty good to me...

All-too-realistic comic strip by Chris Spain, found on his blog from 8/20/2012.

Solar Flares and Sjogren's

In a recent post of mine, I told you I was participating in our good buddy Julia's competition to design an image that symbolized Sjogren's Syndrome (or my experience with it).  Since Julia has now posted her finalists, I can reveal my full contribution (and I use the term loosely) to her effort.

As a visual thinker, I hoped the inspiration for this piece would come to me easily, but alas it wasn't that easy.  The only symptom that every Sjoggie I know has in common in fatigue, and nearly all experience brain fog, but I have no idea how to visualize these experiences.  I'm also not aware of any test, treatment, or device/tool that would resonate with all Sjoggies.  So instead, I thought about what having Sjogren's means to me.  To me, knowing I have Sjogren's frequently calls to mind the biggest, baddest trigger I have - the sun.  Sun exposure is what kicked my disease into an active state when I started high school, and even mild exposure or God forbid, a burn, can send me into a flare now.  The extreme, months-long flares I had in high school were much worse and it took a long time to learn how to manage my sun exposure more effectively.

That's when it struck me - the sun...causing flares...a solar flare!  That's a sufficiently sardonic and yet punny symbol if ever there was one.  It symbolizes both a burst of energy which people would usually consider a positive thing but which for a Sjoggie can precede a disease flare, and a destructive and essentially unpredictable force outside of our control.

Dear Lord, it looks worse every time I see it - I swear, it's less embarrassing in person.  Ok not by much, but still!
(PS- I gave Julia permission to use the image as she sees fit but since it was contributed for her use, I ask that you not use it but rather link to her or my site...you know, if you want to share an entertaining example pathetic adult artistry in crayon.)

Unfortunately, I must have been out sick the day they taught reasonable artistic skills in school (hey, I was out a lot, it's possible).  It is PURELY out of my sense of obligation as a health activist to you and my fellow sickies that I forced myself to create my embarrassing image and submit it to Julia.  Naturally, in True Julia Form, she couldn't let my humiliation go quietly into her files - no, she included it in her post today about the entries for her contest, Creative Challenge Finalists Revealed.

Fortunately, though, her post also contains submissions from truly gifted and exceedingly clever individuals.  I am quite content to leave this type of imagery in their far more capable hands.  Head on over and check out their handiwork - it's really quite touching!  I think you'll like it....

Boldly Going Where No Crayon Has Gone Before

...and that would be into my hands for an art project!  (Trust me, it's a fate no art instrument deserves.)

As you know, my good Blogger Buddy (and general Sjoggie-extraordinaire) Julia always has a unique idea up her sleeve.  A recent favorite was her plot to procure a small 'fainting goat', but trust me when I say that's just the most recent and relatively mundane idea to come out of her dangerous noggin'.

In fact, one month ago she undertook a particularly risky enterprise.  She opened a contest for designing an image around which Sjoggies can rally.  A mascot, a logo, or a symbol, if you will, and encouraged all her readers to participate.  Now, my family can testify that for all the traits I inherited, I was spared any and all artistic skills.  But Julia, being as persuasive as we know she can be, made me an offer I just couldn't resist - the opportunity to attempt to put an image to the invisible world in which we live.  Come on, now, how can I pass that up?

Clearly, I can't.

Photo courtesy of my dear husband.  Who was beyond amused by my undertaking.

Yes, ladies and gents, I dug out (ok, had my husband dig out) my big 'ol box of crayons and give this a go.

What?  You want to know what I'm drawing?  HA, can't tell you that!  It's a killer idea - can't let anyone snag that;)  But fear not, I'll reveal my entry and rationale after Julia's deadline.

In the meantime, why don't you join me?!  Here is Julia's original post about this competition (oh, did I forget to tell you - there are prizes?!).  You'll see the original deadline was this past Monday, but she has since extended the deadline for slow-moving art-eests such as myself, and you now have until THIS Monday, April 29th!  Here's a short summary of her criteria and rules, but check out her posts for all the details:

1. Email your image, drawing, concept of an image, sketch, or model that you think universally represents sjoggies everywhere. Use of a word or alphabet letters will disqualify your entry.
2. You may submit as many entries as you like.
3. You may email your submissions to: juliaschulia(at)gmail(dot)com.
4. All submissions must be received by April 22nd 29th, 2013, midnight. 
5. Judging panel includes: John, Terese, Greg, and D#1. 
6. If judging panel is unable to make decision, I -- yours truly -- will cast the deciding vote. 
7. Finalists will be notified via a post on Reasonably Well and their mailing addresses will be requested. 
8. Winner will be announced by on or about May 1st 13th, 2013.

So there you have it, folks.  You have 5 more days to try to out do my design magic...if you dare...(mwahaha).  GO!

You Can't Finance Energy

Illustration by Tim Bower, originally published with this article in Vanity Fair.

Well if that doesn't look like the way I feel on the inside most days....

Tell me if this scenario sounds familiar to you:
It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer.  Not because you're comfortable - in fact, you may be in pain.  But because getting up requires moving your body and that requires energy and you don't have any.

But you do it; you get up.  You have to.  You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up.  Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy.  How are you supposed to do something with nothing?

What's that?  A resounding chorus of "YES, THAT'S MY LIFE"?  Thought so.

Which of course means the next part will sound familiar too.  The way so many of us get through this is by doing what I call "financing energy", but I don't think this is a very good idea.

When we say we're going to "finance" something like a car, house, or even an education, we mean we're going to borrow money for the purpose of making a major purchase and pay it back over time.  We agree to give up a smaller amount of our money each month for a period of time so we can have something bigger & better right now.  Usually, at least if we do it right, we first consider how much we can handle giving up each month to make sure we don't "over extend" ourselves and if we were right, this works just fine.

The problem is that energy doesn't work that way.  You could say that we give up some money to get energy when we buy and consume coffee, energy drinks, even high-sugar items, or any  other device or trick we can buy that results in what appears to be energy.  But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while.

Oh and the way we pay interest on purchases we finance?  Where we pay a little extra in total for the luxury of spreading out the expense?  Our bodies didn't forget that either.  If you expend more energy that you really should have used, you won't just be out of energy tomorrow, you'll feel worse than you started today.

Financing energy is a dangerous, if common, practice.  It almost always ends in the bodily equivalent of foreclosure...or one might say, forceclosure.  (I know, I'm slipping into Jen Pun Land, but this one's actually pretty logical.)  An attempt to obtain more energy now than you should have will probably result in a total loss of all energy for a period of time and cause you some level of suffering.  So, we have to find alternatives.

Obviously, the best solution would be to space out tasks to respect your energy limits (much like credit card limits in this case), but this is obviously difficult at best.  If this can't be done, we can try some less ideal options that might still save us the pain and regret later.  A difficult but effective solution is to learn to say "no".  No, I can't run that errand today.  No, I won't be attending that event this time.  No, you will need to wait for us to go over that.  It's a fine line, because sometimes saying no leaves us feeling controlled by our diagnosis but it's really the other way around, we're in control because saying no now means we'll be able to say yes to things later!  We have to remind ourselves, and each other, and those around us, that it's ok to sometimes say "I will be happy to do that tomorrow" or "please let me know next time that comes up".  We fear missed opportunities, perhaps even more than the average person.  But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.

Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means.

Ironically, as I was about to hit publish on this entry I saw the following post on Facebook.  Seems I'm not the only one with this train of thought today!

Just Another Day

Drama masks found here.

As any good Sickie knows, there are times we just aren't doing well.  Times when we're run down, experiencing increased symptoms, and may be having heightened disease activity.  These times are unpleasant and, especially as an activist, I spend a lot of time and effort trying to convey just how severe these bouts can be.

Among ourselves, we often discuss the way our society encourages us to suppress this reality.  We're supposed to put on a smile like the face on the left even when our bodies and souls feel like the face on the right.  If asked "how are you?", any answer other than "fine" is considered impolite.  Naturally, this adds to the feelings of isolation we tend to have and can an even contribute to the phenomenon where those with invisible illnesses begin to question their own sanity - and sickness.  It is necessary for us to have ways to explain what we go through that resonate with "the outside world".  This is why diagnoses are so important - a name, given by a doctor, means it's real, right?  Medications and treatments are only given for "real" problems, of course, and having unified terms for hard-to-describe symptoms, such as flares, help us unite ourselves as well as demonstrate the validity of our experiences to others.  And this is important.

On the other hand, at the same time that we are trying to validate ourselves, we also have a singular reality to deal with - we are sick.  Every day.  Not always to the same degree, and affected by a myriad of factors, but still "sick".  And if we were to get worked up every time we hurt, are weary, or experience some other common symptom, we would eventually cease to function altogether.  And so we develop our own sense of scale; our own perceptions of what's worthy of some emphasis and what's par for our own course.  We simply do not want to live in a constant state of drama - it's bad for us and it can suggest to outsiders that we are drama mavens rather than reasonable people going through unreasonable challenges.

But these two facets - validating the severity of our situations and moderating our own daily sense of peril - can come into direct conflict.  After all, it's rather hard not to sound dramatic when the word for a burst of illness is called a flare, don't you think?

Yet another reality, one I discovered while trying to write a laid back-sounding email requesting information so I could reduce my stress and avoid making myself sick.  Oh bother, one battle at a time, I suppose.  I think I'll channel Eeyore while I head off to bed and leave the problem of refining the English language to someone more qualified.  Good night!!

I'm considering having this made into a sign for my bedroom door .  In the meantime, you can see the original site, here.