Category: Health

Infertility, Stevens-Johnson Syndrome, Pregnancy, Hormones, PMS & Kids getting sick. Fatigue. What to do with a sick husband? Death. Mental Health.

Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…

by CrazyUsFamily / Health / People I know / Stevens Johnson Syndrome24 Comments on Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…

I shake my Fists at You!

Kyle in the hospital

Over the next few weeks I want to share our story, the story of how Stevens-Johnsons Syndrome came  into our life (twice), burned our house down and changed us forever.  Our world completely turned on its head, I honestly do not know how we made it through. Truth be told, we are still not out of the woods and sweet Kyle will be dealing with the physical complications (like a very weakened immune system)  for the rest of his life.  Just this week he is getting over the combo-illness-package of Hand Foot & Mouth, Strep Throat & a nasty Staph Infection on his upper thigh. I am so glad he did not have to go back in the hospital. That’s how he rolls — now.
Continue reading “Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…”

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I’m an idiot Part 3: Dooce and Crazyus

by CrazyUsArchives / Family / Health / mommy blogs / People I know24 Comments on I’m an idiot Part 3: Dooce and Crazyus
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I’m an idiot Part 3: Dooce and Crazyus

 

 

The idiocy of this post. Here is deal. When I decided I wanted to actively blog again, a well-known blogger told me the following:

“Beth, if you ever wanted to become something again, or even be excepted into the blogging community,  you owe your public an explanation. They need to know what happened between you and Dooce.”

The ridiculousness of it all, is that for some reason I feel like I  (owe you an explanation, that is). Hmmm. Still working on that.

So . . .

Here is my first conundrum, and probably why I find blogging a most paralyzing situation. See, I have not been sure what to say or how to say it. Likewise, I feel weird sharing. I am also terrified of the backlash. I have experienced gas-lighting, and it ain’t fun.

That being said, it is true. For me, 2006 was horrific! My fertility was heartbreaking, my late miscarriage nearly ended me, and dealing with the rise of the mommy-blog-nation FREAKED me out.

Instead of pushing back, or holding my ground, I fell apart. I make no excuses. I am a real human being. Fertility hormones are crazy. Late miscarriages suck! Dealing with other mommies (in such a new and public way) was difficult (at best). Was it hard for you?

Many folks in the blog world understandably associate me (or long ago did [wink wink]) with Dooce and her wildly successful website, DOOCE DOT COM.  Of course they do. For a time, Dooce often chose to write about me and my family in a public format. That is it. In private-friendship world, I would not chose to air this story. BECAUSE this WAS NOT a private friendship, I feel compelled to address it publicly.  And because the world’s most famous and most successful mommy blogger chose to write about me, my husband and my sons, I feel obligated. Isn’t that weird? I think it is.

I also think that is why I am feeling the pressure now. Dooce can remove the posts about me from her website (has she?), and I can take my blog down (I did), YET those posts will always exist — somewhere.

I keep trying to wrap my head around it and to push myself through it.  I also realize that Dooce has written about many, many people.  I think it is her formula and it is brilliant — drama online (where she casts herself in the role of victim). Her relationship talk completely draws the reader in. I think at some point I ceased being a human to her and  simply became character in her online story. And for a time, she often wrote about her BFF, Beth of crazyus.com.  I was on display and I was not certain what to do with all of it, would you?

I hope you will cut me some slack.  I don’t think many people in the industry have. Yes, I benefited from the light Dooce cast on me, but I also have felt the dark and uncomfortable shadow of my association with her.  See, because she publicly wrote regularly about me, when Dooce had an opinion, my world assumed I thought the same.  Behind the scenes it was different.  I was always walking on eggshells, fearing that I would upset her. I always did. It was absolutely crazy. I have never had a friendship quite like this. I could do no right. It was creepy. I learned and felt her cold and unforgiving wrath: no one crosses dooce.

Oddly now and because she wrote about me, and because people still associate me with her,  I feel (and have been told) that I owe you an explanation. Do I? I am not sure. What I do know is that our relationship was prominent in a public forum, so maybe the public is where it needs to be worked out. Thoughts?

Of course my foray into blogging and dooce’s super world was strange. And by strange I mean exhilarating, fun, weird, and horrible. And yes, I liken this particular friendship to a low-rent form of Oprah talking publicly about her friend, Gayle. However, there is one big difference. When Oprah and Gayle fight, they seem to work it out. In contrast, Dooce and I had a falling out. The end. Then I took my blog down, and you never heard form me again.  Here is what I got out of it. A former neighbor of both mine and Heather’s told me this:

“Beth, Heather is telling everyone you up and moved to Park City because of her.”

First, I have no idea if his gossip was true, but it makes a great story, doesn’t it? Second, what the what? We were building a house for two years before I took my blog down. Ah, but third, the actual truth is not dramatic. And we mommy bloggers love the drama, don’t we? It is more compelling for people to hear that I ran and hid from dooce than my actual realty:  I moved and was sad because I had a late miscarriage. I chose to get myself healthy and took my blog down to focus on my dudes and to cope with my sorrow. Well, I would have been smart if I did run and hide, but that just isn’t true.

Likewise, after I moved,  I assume you never heard Heather talk about her BFF friend, Beth again.  But because she talked about me publicly before I took my blog down, and because people keep asking (publicly and privately), I keep feeling (like my blogger friend suggested) that I owe you something.

So I ask you,

“Why do I feel this way? Why do I feel an obligation to you?”

[insert soothing, gentle and peaceful chorus here] MY ANSWER: At this point I believe history has adjusted reality. I do not think any of this really matters, does it? In some ways it really doesn’t.

Then again…Wait. It kind of does. I, not, you, have suffered the extreme dark-side of Heather’s anger. As a result of falling on the wrong side of dooce, I have been shunned, ostracized, lost opportunities, called an embarrassment, someone who invaded her life, a kiss-ass trying to earn favor with dooce, blah, blah, blah. For instance, I love how common friends say that she and I are only friends because of blogging, omitted the long history Heather and I share. I am continually contacted regarding her. Recently I was told where she lives and asked if I could go and take pictures of her trash can. Another friend emailed me to lecture me on her divorce.  As far as I know, she refuses to make amends with anyone she gets angry at. In contrast and from my own experience, when you make amends, you have to look at yourself. I like to tell myself that she cannot look at herself because it would be too much. If she did make amends with all the bridges she burns, she may collapse, or better, may actually heal, forgive and realize that we can share the world together, that we are all cool, troubled and of value.  I have no idea, but perhaps thats the zone she thinks she needs to exist in for her success. It does make me sad. I really liked her way back when. I am a good and loyal friend. I was a good and loyal friend to her. It is too bad that stupid neighbors and stupid internet people perverted our relationship. It sucks that so many folks tried to use me to get close to her. It totally is lame that she can trust me for the person I am. Why can she write so openly and not give the rest of us the same platform? I never quite got it. I did not like she constantly telling me that she was convinced that I thought she was the bane of my existence. Sorry for using the word, “retarded,” here, but that is just retarded (very foolish or stupid). Really.

Moving forward, taking deep breaths, and oh thank God — I am glad I am here where I am now. I am grateful for what I have learned. I forgive myself for not getting it.Who did? Blogging was new. I never anticipated I would be walking in those particular shoes.I only wish I wasn’t such a pussy. I am learning to be better about standing up for myself instead of letting myself get caught up in the crazy.

Now I live in Park City. When we moved here I did not know a soul. It was terrifying and exciting. I did not have to talk about my blog so I didn’t.  Consequently, no one I see has any idea that I blogged or that I knew Dooce. People here care about skiing, raising an Olympian, money, age prevention and exercise. And if they do know who Dooce is, they do not know she was ever my friend. Here, I am known as Kyle and Eli’s mom, Dave’s wife. We are known as the family who built the green house next to Rob’s. We are the family that took our kids to Hippie Pre-School, and the crazy family who travels the world. These days the fact that Kyle nearly died and was bitten by a copperhead snake is what people in our offline world want to talk about.  Of course, it has been nice.

Here it is. If you want to read my stuff, I would love to have you. I am inconsistent. I no longer know dooce. I am certain she no longer wants to know me. Yes, we still have several close friends in common. And yes, I think it is bizarre. I would think by now that we could move past this. I have. I sent her a letter when Kyle was sick. I have sent good wishes her way. Namaste even to her. Seriously, I can’t give this situation any more power (if that makes sense).  And because I am an eternal optimist, I hope everything will once again be right in this world (yes, including a peaceful resolution with Heather). That being said and because I am getting way too old to believe in happy endings, know that I am not holding my breath.

 

PS I may keep rewriting this post until the end of time. I am ok with that. That was one crazy ass time of life!

 

[to be continued]

part 1: blogher 2006

part 2: 5 year run down

Part 4: the summary

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Eww and I Promise I Would Tell You

by CrazyUsFamily / Health / Travel7 Comments on Eww and I Promise I Would Tell You
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Eww and I Promise I Would Tell You

A few minutes ago I looked in the mirror and noticed to my extreme horror the dried spot of blood on my face. On the right side of my cheek, about an inch to the side and a little to the right of my lip, there it was, a giant, hideous glob of dried reddish blood. “Eww, and how did that happen?” My guesses are that either some super human soul stealthily shot me with a Fiberglass arrow, only grazing my skin or that I walked into something, acquired temporary amnesia and spontaneously began to bleed. The blood was dry which also led me to believe that it had been sitting on my face, in full view, for some time. “Gross and Damn it!”

Let’s see, in the time that the blood was most likely coagulating, I went out to lunch with Dave and did a bunch of other things. At at our local Good Karma restaurant, I sat across from my dear husband for nearly an hour eating my citrus glaze covered Chicken Kebob while Dave ate his yummy Lamb and Chicken Coconut Indian Curry. Not a word. Not one word. We talked, we smiled. I think we even held hands, and nothing. I ate a bunch of his spicy chicken curry. Nothing. Not even a slight notice of the giant splotch. When I assume my face was compromised and before we began to eat, we learned from our waitress that we actually needed the two for one coupon, instead of just telling the waitress about the ad in the paper. Dave’s office was close by so decided to we walk back and retrieve the coupon. At his office I met his new intern. In fairness to this young and fresh employee, I am guessing it would take a lot more than seeing blood on my face for him to speak up to his boss’s wife. What would he say, “Ah, um, Dave’s wife, um, your face is bleeding.” I’d think it would be a little weird too.

As Dave and I left the office, I said hello to his business partner’s mother and exchanged a smile with another woman I almost went into business with. Not a word, not a word from either one of these ladies. You would expect something from a fellow female, wouldn’t you? We made it back to the restaurant. We spoke with two waitresses. At this point the closest indication that anyone was trying to tell me that I a had a glob of dried blood on my face was the funny look I received from business partner’s mother, if it even was a funny look?

After finishing lunch and before I even arrived to pick the boys up from school I had encountered six people directly, including Dave. He and I also walked by another company’s barbecue on our way back to my car. In fairness to the barbecue folk, I am sure they would not blurt out to a complete stranger, “Hey, lady, you are bleeding,” would they?

For me the most shameful-blood-on-my-face moments would have to be all the other mothers I engaged when I picked up the boys. Today not only did I say hello to the moms in the pick-up line, I also went inside the school. How many women and children do I see daily that also saw my deranged face?

Once home, not knowing my predicament, I looked in the mirror while flossing a random piece of something or other out of my teeth. There it was, the BLOOD and that is where all my retroactive panic began. If I have blood on my face, food in my teeth or toilet paper dangling off of my feet, I would greatly appreciate the heads up. Now if you notice the gap between my teeth, I know it is there too. That, I am stuck with.

Stevens-Johnson Syndrome: Beginning to Process

by CrazyUsArchives / Family / Health / mommy blogs / People I know / Stevens Johnson Syndrome22 Comments on Stevens-Johnson Syndrome: Beginning to Process

(and there is a long way to go)

I have so much to say and I want to say it. There is just not enough information about this terrible disease. I need to share our story.

Indulgent is what I feel. My Brandi Carlisle Pandora Station is on. The song, “You belong to me,” plays in the background. I hear the words:

Oh I’ll be so alone without you
Maybe you’ll be lonesome too

Fly the ocean
In a silver plane
See the jungle
When it’s wet with rain
Just remember till
You’re home again
You belong to me.

Years ago my friend Katie died way to young of Leukemia. She was much younger than me. I often visited her in the hospital and became close to her and her family. When Kyle was in the hospital I felt Katie everywhere, especially in the hospital playroom. Right now I am in the middle of responding to an email from Katie’s mom.

As I try to respond, my throat tightens and tears fill my eyes. I feel indulgent and self-consumed as the sweet, sappy music plays. I feel weepy and breathless as my fingers click away.

I have to stop and write before this moment leaves.

. . . It was one of the many long hospital days. Gratefully, as they often did, one Kyle’s very best friends and his mother,  came to spend time with us. His best friend was still recovering from a brain injury. Kyle’s friend empathetically had this uncanny ability to comfort Kyle in ways I simply could not. My mom was at the hospital that day and we all made our way to the hospital playroom. Kyle was walking with his mobile IV station, tubes and IVs attached. As I talked to my friend, Kyle and his friend built model airplanes. As we sat, I looked around at all the sick children, some dying and some about to go home. I was completely deer-in-headlights overwhelmed. I watched Kyle and his friend, Kyle’s face so swollen from steroids, wearing a tan baseball cap. Somehow when he wore this one tan baseball cap, given to him by another friend, Kyle’s face seemed to look even more swollen, his lips more bloody and sore, his eyes more profoundly injured. He looked to me like a Cancer patient. My thoughts went right to Katie and coincidentally so did my mom’s. I remember the many times visiting Katie when she came to Minnesota for Cancer Treatment, her face swollen from steroids, her sweet and hopeful enthusiasm. I told my friend about Katie and that she had died of cancer. I choked up and forced my feelings down. I was completely caught off guard with emotion. Maybe it was because my heart was wide open. Maybe it was because there really is something beyond this life. I am not sure. What I do know is what I felt next was a gift. I felt Katie, as if she were alive and sitting right next to me, hanging out and helping me let my guard down, something that has not been easy to do.

And then today, I felt Katie as I wrote her mom. Sweet Katie is one of the many unexpected gifts in this whole crazy mess. Each and every time I have thought about her since Kyle became ill, I am completely overcome. I don’t think anyone has any idea until now that this happens. Somehow Katie has been one of the only things that can propel me passed my stoic and frightened exterior. My heart opens wide and somehow I am able to allow those raw feelings and memories of me helplessly watching Kyle suffer surface.

For months I have been scared, confused and completely out of my depth. The indicator of how serious this has all been is that I am holding my usually unguarded feelings tight and close.

Today, and thanks for me finally taking the time to respond to my email, my heart is open once again. For how long, I do not know. I will take the moment and let myself remember. And now with some distance I am beginning to look back and see how absolutely horrifying this experience was. The moments are opening up and revealing themselves to me and I am grateful. These moments have patiently waited to show themselves and I am sure they will continue to do so.

In the safety and silence of my home, I can now see Kyle attached to his mobile IV standing in the hospital hallway, wearing sunglasses and screaming, I mean screaming at the top of his lungs,

“MOM, MOM, MOM, IT HURTS SO MUCH,” followed by, “MOM YOU ARE WALKING TOO SLOW,” immediately followed by a, “I CANNOT BREATHE! MOM, DO YOU HEAR ME? I CANNOT BREATHE! MOM!”

In a state of shock I stood there, in a random hospital hallway, burned out, watching my boy, helpless, his face, his eyes, falling off from the inside, feeding tube inserted down his nose, IV attached in his arm and irritating the hell out of him. And then the gentle Med Tech touching Kyle’s arm, softly pleading,

“Kyle, Kyle you need to be quiet.” With Kyle responding even louder than before, “I CAN’T! I CAN’T! I DO NOT UNDERSTAND! HELP! HELP! HELP! HELP! MOMMMMMMM, HELP ME!”
She gently continued, “Kyle, you have to. You are scaring the other patients.”

We made our way across the floor to the hospital patio. Kyle screamed, spit and continued to flip out. We grabbed a box of Kleenex from the Coffee Cart Lady. Thank goodness for those boxes of Kleenexes. They were everywhere. He tried spitting on the floor. He spit outside. He did not stop spitting. He was mad and he spit. The blood and tissue he spit were so gross. They looked akin to Zombie-Flesh. At that moment I could not see how absolutely bad it was. I could not anticipate the months he would suffer; the months he would continue to lose massive amounts off skin tissue. I could not. What I could see. What I could see in that moment was that Kyle was out of his room. It had been almost two weeks since he had been out of his room. That walk, as brief and crazy as it was, was the first time Kyle had moved, had left his bed, the complete darkness and silence of his room.

And in that moment, that is what I could see.

Women Who Snub

by CrazyUsArchives / Family / Health / People I know / Travel7 Comments on Women Who Snub
FDR Memorial

Snubbed.

And by the way,

Ouch!

For me, and I am assuming most women, feeling snubbed is one of the most immediately painful reactions we ladies can have. As my husband beautifully stated, snubbing is one of the most effective ways a woman has to punish another woman. The deep sting and simultaneous hurt of someone else purposefully invalidating and rejecting us is a pain like no other.

 

To be snubbed can actually be a gift. It was for me.

Namaste.
Peace.
Huzzah!

 

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Stevens-Johnson Syndrome

by CrazyUsHealth / Stevens Johnson Syndrome16 Comments on Stevens-Johnson Syndrome

We are on Day Eight of Kyle’s hospital stay. So much to tell. So much to say.

Stevens Johnson Syndrome
Stevens Johnson Syndrome

What is Stevens Johnson Syndrome?

Kyle had a rare form of this disease. It attacked his internal organs, the inside of his mouth, nose, throat, eyes, eyeballs, lungs. He required a feeding tube. They want to do a PICC line instead, but strong Kyle refused. Because he did not have the usual outside sloughing of skin, the Stevens-Johnson Syndrome was really hard to diagnose. Because they assumed he was sick from Mycoplasma pneumonia he currently had. The hospital continued to give Kyle Toradol for the pain. Eventually, they surmised that Ibuprofen (Toradol is in the same NSAID family as Ibuprofen) was the most likely cause of Kyle’s SJS. Consequently, Kyle had two cases of Stevens Johnson Syndrome.

Stevens Johnson Syndrome
Stevens Johnson Syndrome
Stevens Johnson Syndrome
Stevens Johnson Syndrome
Stevens Johnson Syndrome
Stevens Johnson Syndrome Photo Credit: Mike Sumsion Photography

PS. Kyle also burned from the inside out. That being said, heis so fortunate. It could have been so much worse.