Mr. Toad’s Wild (Medical) Ride

It’s been an adventure…and I use that term very loosely.  To tell this story I should begin at the beginning (a very good place to start).

Somewhere during the first week of May, I had one of the scariest medical moments of my life – I couldn’t breathe.  My nose just stopped working and felt swollen shut.  Otto rushed to get me some Breathe Right Strips, while B10 sat beside me and tried to keep me calm.  I was freaking even HIM out.

Around May 8th, spots began to appear only on the left side of my body.  VERY itchy spots.  We soon discovered I had shingles (yes, at my age), and I found out what “painful” means as opposed to “itchy”.  Hint: it’s not fun.

Mother’s Day was rough, but we made it.

Just as the shingles began to heal (I still have some scars, but not many), spots began to appear on my right ankle.  Followed very quickly by a bright red, itchy rash around my entire lower belly and back, down around both my thighs.  It HURT and it ITCHED.  By May 22nd, my husband had enough and asked me to PLEASE see a doctor, who prescribed a very strong steroid for my contact dermatitis (likely, I’m allergic to some new ingredient in the detergent or fabric softener).

So, for 10 days I take the steroid, and towards the end, I start to get a cough.  I didn’t think much of it (see above allergies), but Saturday, I began running a fever.  I made it home and even to church the next Sunday, but promised Otto if I still had a bad cough on Monday he could take me back to Urgent Care.  I kept my promise, and he took me over at 2:30 pm on Monday.  By 3 pm I was having a chest x-ray done.  First words out of the radiologist’s mouth?  “How long have you been a smoker?”

Um, I’m NOT a smoker.  Never have been.  Awkward silence from the radiologist.

So….by 3:30 pm I’m on my way to the ER for a chest scan, with advice to pack a bag, because it’s not “unlikely” they will admit me.  They didn’t, but I’m glad for the advice, because we were there for almost 12 hours (in the ER) and I really was glad I was able to put on my pajama pants and wooly socks once in the ER exam room.  After 12 hours, they determined it was pneumonia, that had not only infected my lungs, but also they were pretty sure had spread around my heart (which showed a dark shadow in all four x-rays they took).  I was given a breathing treatment, a course of antibiotics by IV, and fluids by IV (plus antibiotics and an inhaler for home use).

On top of that, there are nodules that they found on my lungs.  This, combined with lots of other “mysterious” medical issues (endometrosis, fybromalygia, degenerative eye condition, adenomas, nodules in at least two other tissues), mean that I need to have a full workup done and that starts with a pulmonologist and finding a good PCP for me.  Scary, but we have a great team of doctors at Otto’s work, and Otto is going to really start looking for who is the best person for me to go see.  My eyesight has degenerated since the last test, and pressure is up (really close to glaucoma), and instead of waiting a year, I’ll be back in the eye doctor by January/February of 2015.

Because of all this, Otto decided he needed to take Tuesday off to take care of me, pick up my meds from the pharmacy, and help me get around.  While I was napping, he went outside to trim the hedges, and I woke up to him calling me to come down please, quickly.  Now, Esther has made a new habit of digging out under the fence, romping in our creek, and then trudging to the front door with her muddy paws.  Whomever is home has to then pick her up and cart her up the stairs – not easy when she weighs 65-70lbs.  I crawl out of bed, assuming he’s at the bottom of the stairs and needs help getting her into the tub to take a bath.

Instead, I find him standing over the kitchen sink with blood dripping down his arm.  He hedge trimmed his pinky.  NOT a plan.  One 911 call (and 3 REALLY AWFUL Paramedics) later, and he was in the car with my Mum on the way back to the same Urgent Care.  We were lucky, he didn’t cut a tendon or a ligament, nor did he nick the bone (although that took an x-ray to determine).  He saw the same doctor I saw on Monday, who said “Just so you know, I’m off tomorrow, so if your family doesn’t want to come in either, that would be great.”  Gotta love doctors with a sense of humor.

It’s now Saturday, and we’ve managed to make it the rest of the week, without another trip to the Urgent Care. Although, we DID have a scare – and I am lucky we have an ICU nurse as a friend, who made me feel much better when she checked and said I merely had a bad case of phlebitis (irritation of the vein where the IV was).

Overall, it’s been hard.  Medically, this has NOT been fun.  It has been rough, because I’ve not felt 100% for a long time.  In dealing with everything, though, for the last six weeks, I have realized that while I value my health and want it to continue, I have lost something much more precious since May 1st.

Otto and I had been struggling to make sure that we were following God and our family was serving Him in the manner in which we were suppose to.  Somehow, in the midst of all the other things going on, we lost our church and I lost one of the women I thought was a close friend.  I wish I knew exactly how or what I did to ruin the relationship.  All I know is that when you have someone on your iPhone Favorites list, and then five weeks can pass by with nary a phone call or text (or a response to any emails sent), it’s devastating.  I would suffer much greater physical pain, to know what I did to lose something so precious as a friend.

I encourage you, whomever you are, to slow down today and take stock of what really matters.  Your family.  Your friends.  And your health.  Enjoy each moment.

~Mummy Butterfly  )i(

Thank You

My Puppy, Reuben, says “Thank you for reaching out to my Mummy.”
Actually, he says “woof, woof”, but I speak Plott Hound fluently.

Thank you.

Most of you left comments on my Facebook page, and some of you sent emails and text messages.  No matter how you reached out – thank you for doing so.

Most of you said “I don’t know what to say, but I wanted to say something.”

Thank you.  That is exactly what you needed to say, and what I needed to hear.  Grasp onto that.  When you don’t have the “right” words, sometimes, just being willing to show you listened and you care is all the person needs.

This has been a crazy week at my house.  My wonderful mother came over for two days in a row and helped me clean my garage.  Completely!  Over three carloads of stuff went to Goodwill.  We had SEVEN giant boxes of recycling.  Both large trashcans were filled.  It has been so amazing.  My rash hasn’t been quite as bad, but yesterday was difficult on me (I was feeling pretty poorly – not only the rash, but B10 and I have had pretty bad summer allergies that were exacerbated by everyone mowing the grass!).  Otto stayed home from work to help nurse me back to health and take care of the Caterpillars.  My Daddy surprised me and BooSheep by being able to have lunch with us (and all the kids) – so even though I wasn’t feeling 100%, it was still delicious to have some Cajun food and BBQ.

Today was even more insane, trying to watch lots of cute kids in childcare, then dealing with the emotional breakdown between two of my own caterpillars.  (I think the ages of 12 and 5 is one of the most difficult age gaps to have – both are old enough to know better and young enough to ENJOY annoying their sibling with no regard for personal safety.)

So now we are resting.  Preparing for the weekend.  And even though I am tired and still coughing up grass debris, I am immensely grateful to everyone who has been encouraging.  It mattered.  You matter.

Thank you,

Mummy Butterfly

My Puppy, Reuben, likes to hang out and hold paws with me. 🙂

My Illnesses – Uncovered Finally

(Note: My beloved husband read this post and encouraged me to share it.)

I have two illnesses.

I am not defined by my illnesses.

But, at the same time, I am. Even though no one knows much about what is wrong with me.

I have been resistant to speaking out, because I am positive that it is easier to hide what is wrong. Social stigma about Mental Illnesses is really only growing. And I have a wonderful support person, a gentleman who suffers from one of the same illnesses, and while he is “public” with his struggle, I respect his privacy here on this blog. I have been to therapists, three different ones over my adult life, to try to “fix” the disease, and developed my coping strategies.

The most basic thing is that my illness does not respond to any medication. Recently, I was doing more reading on how research had progressed, and found out that the two illnesses I suffer from have been moved to the same category in the 2013 “Big Book of Mental Illness” (that is not the proper name, but it’s close enough for the diagnostic book that is used as a tool by doctors).

In light of that move (I never would have seen the connection myself), my encourager gently prodded me to speak out. To make my illness known, if not for me, then for others who suffer from both.

I have OCD: Obsessive Compulsive Disorder. Not the joke “oh, I have to have my closet organized” kind of funny OCD. The kind of OCD that can leave me paralyzed in my bed – only getting up because I HAVE to get GO to school on time.

I have both obsessive and compulsive tendencies.

I cannot walk on paint in a parking lot. Not painted lines, not painted curbs, not those GIANT blue painted handicapped spaces. It’s not a joke, I will have to force back crying and throwing up. I can’t tell you why. Home Depot parking lots FREAK me out – with all the spilled paint on the lot.

I have to wash my hands in the bathroom and then use three paper towels. Not two. Not four. Three. I have to make myself wash my hands in a bathroom with no paper towels (only hand dryers). I actually know the Health Code Regulations (if the door opens inward, so you have to use a hand to pull it, then the place of business MUST offer some time of paper towel, not just air dryers – that is usually why you see both in a restaurant/store). If I have to use an air dryer, I have to count by threes until my hands are dry...3…6…9…12…15…

Those are the two easiest ones to explain. There are so many more. Rituals that govern my every move. I have obsessive tendencies that make things worse.

Most of my obsessions are private, things I am not willing to share – things that can take over my waking moments and creep into my dreams. It is mostly people close to me getting hurt, coupled with my irrational belief that if I do the right thing, I can take on the pain for them. (Like, if I had loved my grandmother more, God would have given me her cancer, and let her live.) It’s not rational, but I can’t make it go away. I think about it on a weekly basis for hours. So many things like this.

I was convinced for years that if I could keep my eyes closed for the entire time my preacher was praying at church, God would heal my mum of her medical issues. I can remember doing this as far back as 4^th grade, if not earlier. The amount of guilt when I would open my eyes was overwhelming. (Especially since I went to a VERY traditional Baptist church…prayers were about as long as sermons. And it only counted if it was the Senior Pastor.)

OCD is a quiet illness. As long as I keep my thoughts to myself, I look like I’m taking a bit longer in the bathroom or at the water fountain (swallows have to be in multiples of the number five), no one really notices.

I also suffer from BDD: Body Dysmorphic Disorder. It is this disorder that in 2013 was reclassifed as a being on the Obsessive-Compulsive Spectrum.

In some ways, that simple reclassification has made a huge difference to me. It makes me feel less crazy, that my problems are not only real, but may have something to do with one another.

Body Dysmorphic Disorder is when you have an unrealistic picture of yourself in your mind’s eye (simply explanation).

I have BDD. I cannot stand to look at myself in the mirror. I believe I have a huge witch nose and a horrible chin. I can’t UNSEE that.

When people act oddly towards me. Or, in reality, are over talking to other people, and not me. My first (and most overwhelming thought) is that they don’t want to be seen with someone so hideously ugly.

I also believe myself to have problems in my waist. Not like other people think they are “fat”, but in my stomach, I feel like people are staring at me and seeing my belly poke out and are horrified. I have to forbid myself to step on the scale. My brain knows my weight is fine (and perhaps even a little low). That does not change what I see when I look in the mirror. I don’t suffer from anorexia. It’s not “fat” that I’m seeing, it’s “ugliness”… I have thrown out clothes, because I feel so grotesque with my stomach making me look pregnant.

I have the incredible opportunity to workout at a World-Class gym, with personal trainers for free, and I am scared out of my mind of what could happen if I allow myself to get involved with an extreme exercise program.

There is a bright spot. When I am pregnant, the BDD basically goes into a type of remission of sorts. I have no problem being a mother and focusing on my pregnancies (and ignoring my weight gain and how my stomach looks). And in that vein, while I still don’t focus on the mirror, I feel less hideous and more as though I am fulfilling my purpose as a mother.

There is no medication. Traditional Therapies didn’t work (I get it – it’s not real, talking about it ad nasum isn’t going to help). More recently, research is suggesting that OCD (and everything on that spectrum) are neurological, not psychological. I am eager to find out where this research goes (and what new treatment options might be in the future).

Until then, I am grateful for a fellow sufferer of OCD, who gave me the courage to speak out and step out. To my previous therapists, who have all prepared me for being public with my struggles. And I am infinitely grateful to my husband, who understands (or at least listens and wants to make it better, even when no one can).

~Mummy Butterfly )i(

For more information check out the links below. While I don’t always advocate Wikipedia, it does provide a helpful overview that isn’t bogged down with medical terms:

OCD: Obsessive Compulsive Disorder

BDD: Body Dysmorphic Disorder

Mary, Beloved Guinea Pig

Normally, I don’t post as much about our older Caterpillars, for their privacy.  It’s hard enough being a preteen/teenager, it can only be worse if your Mum is constantly putting everything you do on her blog.  However, CW came to me and ask me to post about Mary so there would be a memorial to her online and so that other boys his age could see it is okay to cry and be upset if you lose a pet.

I felt strongly I needed to honor his request, so this blog post is about Mary.  We let CW choose how to deal with her death, and he was very adamant that he wanted to build her a coffin.  I am grateful to the older gentleman at Lowe’s who didn’t talk down to CW or make him feel like his request was stupid, but instead took the time to help him choose the best lumber for the job.  It was very important and meaningful to me to see this adult treat my son with such respect.

CW wanted to bathe Mary, himself, and spent a lot of time drying her coat and taking care of her, while crying on and off.  (He has asked us to not yet move her cage out of his room, but says he will ask Papa to move it soon.)

Placing Mary in her coffin.

Mary’s Coffin (made of Aspen Wood).

Otto finished up his work early to get home as quickly as possible to help CW, and sat beside him when CW just wanted to talk.  I found an old piece of yellow fabric to line the coffin with, and CW wrote a beautiful letter to print out and go in the coffin with her.  His letter is below (and I haven’t changed anything for grammar, other than his name):

Mary

I wish you were back with me right now. I will and always will miss you forever. I think you will have a good time up in heaven, I wish I could be with you now. We will have lots of fun when I go to heaven and come home. I will pray for you always, and I hope you meet lots of people. You will love all the treats that are up in heaven. Go meet all our family and love them a lot. I hope you get to move in to our house or your house and put up lots of pictures.

CW

love you mary.

CW knows about heaven, but was asking lots of questions – after explaining that I can’t speak truth from Scripture, I can tell him what I think happens.  I believe that animals are in heaven (and will be on the New Earth), because I don’t believe God will reject the creatures who never rejected Him.  I also believe that all the people on earth who were allergic to animals – they aren’t when they get to heaven, and I believe that Mary is being well loved and taken care of by those people, until CW arrives.  I believe my grandmother, Mimi, is spending time with her great-grandson’s guinea pig and loving her lots.  I believe that God sees a child’s heart and allows it to grieve and heal.

CW saying goodbye.

CW asked me to seal the lid of the coffin, so he wouldn’t have to nail the top on.  While I was doing that, he and Otto went to the backyard to dig a grave, below a tree that CW particularly loves.  Otto said CW did most of the work, and after he placed the box in the grave, he wanted to cover it up himself.  We quietly stood by and respected his wishes.

It was a horrible day, and I know my son is devastated.  But I am grateful for a husband who hurries home to help take care of the *heart* of our child and that I have a son who trusts that we, as parents, will stand by him and respect him and love him.

~Mummy Butterfly  )i(

(This post was written with permission and encouragement of CW.)

31 Days

I did it.

Not that it matters to anyone else, but I did it.  31 Days of Blog Posting.

31 Days of Transformation.

Some was here.  Some was elsewhere.

I’m not “better” when it comes to my depression.  But I’m coping, with some great skillz.

For November, I have our entire meal planning done, and my Mum (Cookie) came yesterday and helped me do ALL the grocery shopping.  Otto helped me prepare the next week’s worth of meals for the fridge/freezer to make this easier.

I managed to do a good bit of Christmas Shopping.  That is HUGE to me.  I kept it in cash and rocked it out.  I love the holidays, but I know they can sink me back into a deeper depressed place if I am not careful.  Less stress is better.

I am moving forward.  Every little accomplishment is a success.

And I did it.  31 Days.

~Mummy Butterfly  )i(

Pain; Anger; God

Sometimes, I get so sick and tired of this world, I just want to escape it.

I’m tired of the fighting and the arguing and the bickering and the anger and the pain.  My heart and head feel heavy and drained.

I have baby presents sitting on a shelf in my kitchen.  Five of them.

Two will never be delivered to their recipients.

That’s a harsh ratio.

I don’t understand this world.  I don’t understand why it has to be women I know.  I don’t want it to be ANY woman.  I ache, and my arms aren’t even the empty ones.

I get angry.  Angry at my Facebook feed, where I have women-friends arguing for their right to abortion, alongside posts of women-friends who have wombs emptied by this evil world, against their wishes.

It doesn’t MATTER how far along a woman is.  It doesn’t hurt less.  It doesn’t magically get “all better”, because of how many ultrasounds she did or didn’t have.  Or who was able to feel the baby move.

Perhaps it is easier on those of us outside the circle.  We have spent less time wishing, preparing, hoping, loving – talking to the child within.

We didn’t put time into choosing a name.  Or time into choosing a method of burial.

It’s not suppose to be this way.  It’s just not.

I know, I KNOW, life is not fair.  But why can’t life be unfair for the adults who have made choices?  Why does it have to be so damn unfair for babies?  And children?

I know God hears the cry of the hurt.  I know He opens His arms to the children who come to Him far to early.

But that doesn’t make it less lonely here.

I personally hate the phrase “lost a baby”.  “Lost” – if something is LOST, I should be able to FIND it.  Lost makes me feel like I’ve just misplaced it.  The babies gone from my body weren’t my fault, but I reached a point where I couldn’t handle trying for the parents anymore.  I couldn’t “lose” any more of their babies, even if I gave them one beautiful girl to take home with them.

October is a beautiful month for so many reasons, but I spend the month in sadness for so many more.

Oliver, Sam, Nathaniel –

You are loved.  I know your Mothers (and some Fathers) and your Grandparents – they WANTED you.  They prayed for you.  They clung to you.  You helped make them Mothers (and Fathers and Grandmothers and Grandfathers).

You are not forgotten.  I promise.

~Mummy Butterfly  )i(

Depression is Real and Lives at My House

I’ve been depressed.  Not sad.  Depressed.  That sinking feeling where it feels like there is a weight on your chest and you can barely take a breath without it hurting so badly you want to cry.  I know it has stemmed from multiple places – the most basic of which is that Went still nurses every 3-4 hours during the night.  He has slept longer than 5 hours exactly twice in his life.

Guess how long it’s been since *I* have slept longer than five hours straight.

“Hey There, Camera!”
(Gotta admit he’s a cute alarm clock, though…)

To say I’m exhausted is an understatement, which has made everything seem so much worse.  GO being in preschool has been a blessing, because it means I have to get up and dressed and move four days of the week.  And Otto is home on the weekends.  Mondays are generally the worst.

I’m overwhelmed.  I look at my to-do list and can’t figure out what to do first, because they all seem so important.  Everything is *big* and *huge* and *the-most-important-thing-ever*.

Even when it’s not.

I’ve tried to implement a few changes in October.

1) Blogging daily.  Even the silly posts help me reach out and do something for myself.

2) I rearranged my house.  Last Wednesday morning, my house had a formal living room and a den.  By Wednesday night, I had a den with two sofas, a comfy pretty chair in my bedroom, and an office.  A downstairs office with giant windows and a place for my computer.  Now, when I’m on my computer, I’m forced to be with the family and sunlight.  Tomorrow, I will post pictures and reveal the gloriousness.

3) Taking care of small projects.  I have had a few small projects on my plate, and with the help of a couple of friends – they are done and returned.  I had to make 60 bags of fruit loops and yarn for the Fall Harvest Fest, and recover musical sandblocks with fresh sandpaper.  Things that took less than 45 mins, but finding that 45 mins seemed impossible.  So they just hung over my head.  Twice a week, my goal is to take care of a small project.

4) I opened up to friends and family.  Seriously opened up.  Sometimes, I think it’s easy to see someone is upset or quiet or sad and it becomes normal.  I had to open myself up and say “Friends, this is different.  My depth of sadness is different.  I need help, please.  Please help me.”   I know I am loved, even when I can’t see it in the moment.

5) I’ve tried to spend more time in Scripture.  I love to read my Bible, especially the parts everyone else finds boring.  Leviticus is my second favorite book.  The order and detail of God comforts me.  (I know, I’m weird, that’s okay.)

6) I am trying to embrace myself and my quirks.  I am who I am.  And I am who I am in Christ Jesus.

7) Coffee.  Enjoy it.  I’m trying to enjoy it with friends this month.  Reaching out and building relationships takes time, effort, and commitment.  I want firm foundations.

I’m still depressed.  But every day is a battle to get better.  One day, I’ll wake up and not remember the last time I felt sad.  And that will be a good day.  But, I’ve found, that I can have a good day even when I’m depressed, if I just look around.

~Mummy Butterfly  )i(

Sick GO – Great Big Brother!

GO wasn’t feeling well, and had been running a fever/throwing up, so had to stay home from school today.  Her big brother, CW, came to her rescue and “built” her a fort to snuggle under.

I’ve got some pretty amazing kids!

~Mummy Butterfly  )i(

Forgetting Fear

It’s almost worse when you forget what you’re afraid of, then it appears again, and for a moment you feel as blindsided as you did at the very beginning.

I nursed Went today, held him close and then when he fell asleep, I moved him up to lay him on my chest, wrapped in his little dot blanket.  He has the sweetest smile in his sleep.  That contented happiness of new people when their tummies are full.  His sweet breath and the way he wiggles as he lays happily passed out on me.  I love these moments, always have with all my Caterpillars.

But it hurt.  It hurt a lot.  I moved his head a little, trying to find a place that was comfortable for me.  Then I realized, what was painful was the fact that his head was right on top of Penelope.  I guess the lumps have become more prominent now – the doctor said it would happen, but to be honest, I’ve been a bit preoccupied to notice/check.  I want to forget the reason so much of this started in the first place.

I want to focus on the precious little caterpillar God has given me.  I want to be able to lose myself in the baby moments that won’t last long.

I had anger, now it’s almost fear – robbed of that moment, because Penelope invaded it.  And I don’t know how to get Penelope out  – I know life’s not fair.  Don’t get me wrong.

But this part sucked.

~Mummy Butterfly  )i(

Today I Snuggle & Rest

Nap Time ROCKS!

I’ve pushed myself too far, which people kept saying – but I felt like I needed to be at school for GO this week, and at church for B10 and the youth, and doing stuff with CW.  Plus, poor Otto has not only been sick, but he’s been getting up at 4 am to get a full days work in before leaving at noon to come home (and help with Went, after picking GO up from school everyday).

So, while I’m not against co-sleeping as a general rule, I do have a beautiful bed for Went.  But this week Otto and I agreed it was just easier to keep Went with us, so he (Otto) could get 4-5 straight hours of sleep a night.  Poor Went, he’s just long enough that when he nurses, he kicks my incision.  I KNOW GO did it, too, but I can’t remember how I solved the “problem”.  So I’m not getting the best sleep at night, and not really taking time for naps during the day.  The pain isn’t like it was before Went was born, but I’m pretty uncomfortable and I know I’ve pulled the wrong way on my incision more than once…

Today – today I am snuggling and sleeping.  I ate a good breakfast, took my pain meds and nursed Went until he feel asleep.  He’s now in his Moses Basket – and I’m about to take a nap.  B10 is in charge of GO (CW is taking a hike with his friends).  My goal is to get 3 hours of sleep, even if I have to do some of it snuggling with a sleepy Went.  If I can just get enough sleep for the meds to kick in, I think I’ll be good.

And when I wake up – I’m cleaning something.  ANYTHING!

Then I’ll crawl back into bed and nurse Went skin-to-skin, and snuggle.  Because he won’t be this tiny for long…

~Mummy Butterfly  )i(