Expectations

So, I'm reading a book about a Dr who almost dies and then has to live with chronic illness. It's a really good "both sides of the line" book. An interesting thing she mentions is comparing working toward putting on her socks to when she worked toward an intricate and very difficult yoga pose (pigeon pose). This made a light bulb go if in my head in terms of our perceived notion of whether or not something is or should be worth the effort it requires. Working 12 hour days toward a job  promotion is "worth it" and that person is congratulated and told how hard they've worked and celebrated.
A person working toward getting out of bed to go to the bathroom instead of the bedside commode is not celebrated, not recognized for their hard work but most importantly the person doing the work has very different reactions.

I could go so far as to say in our society as a whole we are ok with working hard toward a perceived difficult accomplishment that others will notice and accolades will be given, we will take the time and map out a plan when it's something we see as worth while and not necessarily expected of us. But, when it's something basic like putting on your socks, standing up, walking to the bathroom or anything else that is accepted by others as a daily part of mere existence it seems to send our brains into confusion and defensiveness.

[Pretty close to an actual conversation I've had]
"How is your training going for that marathon?"

"Man, it's so tough. It's been a month, I've had some setbacks and had to cut back on my distance a bit for a little while, but all in all I'm still on track to run it in 2 months! I'm so excited!"
"Good luck! That's awesome!"

This affirmation takes on completely different meanings in each conversation.... 

Or
[Also an actual conversation I have had]
"How is your physical therapy going to get you to walk all the way to the kitchen without your walker?"

"I'm so pissed and annoyed, I had a setback this week so I had to go back to only going halfway and build up again from there"
"Oh that sucks, I'm sorry. I'll bring you some chocolate and coffee tomorrow."

Does anyone besides me see the huge difference in terms of expectations of ourselves and our attitude toward our accomplishments when it's something we think we should just be able to do, vs something above and beyond what is expected of us? Something we want to do?
I can clearly see why the person trying to get to the kitchen is angry and upset and I see now how that will affect their ability to accept where they are at. Nothing more, nothing less, just where they are at. You can't accept a limitation in your life when your unconscious expectations are so much higher than that limitation. You can't be at peace with a limitation and overcome when you refuse to accept it without anger or frustration or blame.

Huh. So why do we judge ourselves so harshly for working hard to accomplish something expected vs not expected when they may require the same amount of work?
Clearly it has to do with outside opinions and worrying about the way the world sees us right? Because WE know the difficulty level is real.
So is it that by not being able to do something basic we see that as a failing even though it's a legitimate difficulty?

Why is it perfectly ok with me in my head that I can't run anymore when I ran for years, but it's definitely not ok in my mind that I can't walk up a flight of stairs most days? Or walk the entire distance to my daughters classroom from my car? Is this my expectation or society's? Is it ingrained that one is required and one is "optional" and that somehow it makes us weak to need to work harder than others at the required activities of life?
Is that what makes us angry and frustrated and depressed?

I think it is a societal perception thing as well as personal expectations. The question is where do the personal expectations come from? Society? So is it a vicious circle?

This fascinates me now.....

Cold happiness

I made it! I did it!
This morning I got the ok from R's teacher to go on the field trip. I sat in my car at my son's preschool after dropping him off giving myself a pep talk.
"Suck it up buttercup and make your daughter happy. Let's do this!"

So I grabbed a coffee and my pain meds and drove to the field trip they walked to and when I walked up.... I tripped over something and was looking down holding my enormous requisite coffee when I was hit by my little blonde tornado in a huge bear hug.
"You came! You came!" The smile looked like it

would break her face in half.
I was dragged from person to person in the "this is my mom", "that's my mom" rounds and the other parents looked confused as to why this was such a big deal. But it was for us.
It was a great day! It was an outside field trip literally on a beach cliff overlooking San Francisco Bay. Beautiful and very very cold. And very very windy. Two of the worst things for pain for me. The first time I can make it to a field trip and it's one of the coldest days in San Mateo! Luckily in anticipation of being able to go I left the house in layers, a parka, hat, gloves, comfy warm boots and a scarf so it was just fine. I'm starting to get the hang of this "be prepared" thing.
I did learn I'm not the greatest chaperone. I am extremely chatty and very outgoing so I kept getting caught up in conversations with the other sweet moms and losing my kids. Ha! Luckily it's a very small, completely contained place and the three kids I had were my own, my good friends daughter (one of my daughters best friends) and one of my girl scouts 😉 so if any parents of kids in our class are reading this everything was just fine.

I can't say it enough. This was just another reminder of how we need

to appreciate seemingly simple things in our child's life. My little girl is so used to me not being able to go places she was expecting me not to come. The surprise was huge and so happy and probably something she will remember in her future. In one way I feel like it's good because she appreciates these things more than other kids with healthy parents, but in another way I really wish she could take for granted that her stay-at-home mom would go on her field trips and volunteer in her class.

Of course, if I was healthy enough to do those things regularly I'd be working and still not actually able to go. Hmmm.... Life is one big catch-22 isn't it?

Bad idea + optimism= mommy

Tomorrow my daughter's class is going on a field trip! It is to a place which is a mini (very mini) "zoo" and a small science museum. It's a local treasure, perfect size for little ones, hands on exhibits and right on the San Francisco Bay. You may be able to tell I actually really love it there.
It is about a mile from my daughter's school so they generally walk there and back, going on this field trip at least once a year.
This year she is begging me to chaperone. Begging. Usually when I say "I'm sorry honey but that's just too hard for mommy's body, I just can't do it I'm sorry" she is disappointed but understanding and resigned.
This time she's relentless going so far as to tell me she overheard two if her friends commenting on her "mom not even being able to get out of bed sometimes because she's so sick". She told me this with tears in her eyes and an imploring look on her face. Whether or not the story itself was completely true, the emotion definitely was.

See I sort of got myself into this mess when I spontaneously decided to volunteer in my son's classroom when I started pulling through the neuro attack. He's in Pre-K so it's a pretty easy volunteer job and was a lot of fun. That's when the begging started for me to volunteer in HER classroom. I actually really do enjoy it and I did have every intention of doing so, but her teacher has still not responded to my email about

helping in the classroom. Then the field trip slip came home and the extreme disappointment and sadness began.

So, mommy guilt strikes again. Though truly she doesnt complain nearly as much as she could. She is extremely helpful to me and her brother when I am stuck in bed and this is the first time this has seemed so important to her. Maybe her friends did mention it. Maybe she's tired of her mom not being able to volunteer or even pick her up from school sometimes. Maybe she just wants me to go and that's that. I don't know what it is but I decided that I will go on the field trip tomorrow. I won't walk to the museum just to be on the safe side, and with her teachers complete knowledge of my health issues I think I will be fine. I know the places very well so I know I can sit if I need to, go inside when my joints start to freeze up and stiffen (being on SF Bay in Feb is gorgeous but very damp and not so warm) and I will have my car if I need to leave early.
So four hours on my feet wrangling a bunch of 7 year olds..... What could go wrong? 

Not without my meatballs

Am I the only one who finds IKEA completely exhausting and overwhelming?
My stamina on my best day is not up to the all day commitment that is the swedish Haven of....well everything. Today was not one of my best days.
We are remodeling our house. Yay! We have already had it painted and are now moving on to built-in cabinets in the living room, among many other things.
To make this "easier" on ourselves we thought we could try some of the DIY hacks that use IKEA cabinets as their frame and base and just fancy them up to look built in. So off we go with both kids to the worst place to take kids to.
Another important point- my husband and I are not shoppers. We both despise wasting time shopping. We don't need/ want/ like "stuff" (for real,  no one believes me, but I love empty shelves and drawers and I truly do not understand chachkes or knick knacks. They are a mystery to me. Why do you have stuff you don't use that just sits there collecting dust? Yes it looks pretty at first, but scientifically we no longer see the things in our house after a while.... But I digress). Shopping also just so boring and frustrating. But, for some reason we were both excited about this adventure. Not for long!
Many moons, measurements, reprimands and time-outs (who knew B could fit in a dresser drawer?) later we called it quits and headed for the cafe for our requisite swedish meatballs reward.
Standing in line I abruptly realized I needed to get home quickly because my body was rapidly

failing on me. And yes it happens that fast.
What does that mean exactly you ask?
Well, let me tell you!
It starts as an almost tingling all over my body. Not a pleasant tingling but an ominous one that threatens things to come. My brain begins to get extremely overwhelmed with activity around me and can't process things very quickly. Hello crowded IKEA cafe with two small children!
I told M, my hubby, that I needed to go home. Well versed in this sudden change of mood and direction he asks "do we need to leave the meatballs and leave now, or do you want to try to go sit and I'll finish up getting the food?" (It is cafeteria style).
I love that man. For so many reasons but this intuitive, knows exactly what's going on and what choices to give me moment reinforces it yet again.
"No. I want my meatballs. I walked all around IKEA. I deserve meatballs. I'll get us a table."
The 4 yr old and I wandered with him looking for a table and guiding me holding my hand.
When our meal was over I walked like a zombie around the winding path that is the "exit" from this giant warehouse full of everything you could ever want. I couldn't correct (yell at) my kids, I couldn't focus on anything and I was concentrating so hard on putting one foot in front of the other that I tuned out the world around me. I vaguely glanced at the curtains "oh I wanted to look at curtains", I strolled past rugs "oh M mentioned he wanted to look at rugs. Wish I could do that", "it's a Shame I can't look at picture frames and maybe new bowls"..... Flitted through my head as I repeated "left foot, right foot". My body melted into the passenger seat of my car, my ability to drive on hiatus for now, and I grabbed my medicine bag. I don't remember much after that, but I can almost guarantee it involved me crawling into bed.

And in the end we decided not to buy pre made IKEA cabinets and to go completely custom from scratch.

Girls with bow and arrows

My daughter's girl scout troop (that I am a co-leader of) is eligible to go to a weekend camping trip the Girl Scouts put on for all Girl Scouts of all ages in Northern California. It's in June and it's called Camporee. (I feel like I need to cheer or something when I  say that.... 🎉). I have been looking forward to this for 2 1/2 years! We all sleep in bunk beds in cabins. The girls get to go canoeing, do archery, swim, do crafts, climb rock walls and sit around a camp fire at night making s'mores and singing Girl Scout songs!! I mean how can you not want to go!? I really really really want to go. Aside from the fact that it sounds incredible (I get all excited when I think about trying archery for the first time!) this is a big "mother/ daughter" bonding weekend ... I think you can see where I'm going with this.....
My daughter once wrote that her favorite thing was going out to lunch just her and mommy. She requests "mommy/ R days" all the time and Mondays after school is our time while her brother is still at daycare. Last week we had a girl scout meeting at another leaders house and she was over the moon excited when I said I was going....it's been a while since I've felt up to going.
By now you have figured out that my little girl would love nothing more than her mommy going with her, without our boys, for an entire weekend to camp and have an amazing amount of fun. So, when I got the email invite I was excited to sign up and instantly said "we're in!".




And then reality set in. Huh. Can I physically do this? How can I do this? I asked a co leader who's been there for her opinion and rundown, so we met for coffee this morning. But first, last night I texted my good friend who seems to know me so well in this capacity and who has been to Camporee many times.  This is the text I received back....

So now we start with the hard questions. Why do I want to go? (Well duh) Do I REALLY think I can do it? What would be the plan for the day we get home? (Most likely in bed all day) What can I do while I'm there to make it easier? What is my emergency plan if my body fails me? 

I'm determined to figure out a way to go over the next few months so stay tuned! 

Feeling good with my mom guilt

"We have to go home and do valentines today! Mommy you can help me! Except..... Do you feel good today mommy?" Said in the sweetest 4 year old boy voice you can imagine broke and swelled my heart again today. Just when I start to think I have a handle on it..... 

As a matter of fact, after dropping off my daughter and carpool this morning, dropping off my son, coffee with a friend, an errand for my son's Valentine's day party, talking with/going over everything with our painters, picking up my daughter and carpool and picking up my son I really wasn't feeling good. I did feel ok this morning, but the days just destroy me still. I  wanted nothing more than to lie down and rest for a few minutes, but how do you say no to big blue eyes and the sweetest 'almost boy but still baby' voice?

The answer is you can't. Seriously U.S government you need to use cute 4 year olds as interrogators because you just can't say no to them. 

Anyway, we did 32 valentines (with stickers and tattoo inserts! Because I'm a masochist apparently), and laughed and chatted and had snacks and it was fantastic. Yet another day I need to remind myself these moments go fast. 

So so fast. How many more years will this sweet little boy want nothing more than for his mommy to sit with him and help him with his valentines? I'm so glad mommy guilt kicked in today. Sometimes I guess it can be a good thing....😉

How to do sick correctly

So you'd think after 8 yrs I'd have this whole illness thing down right? I'd know just how to deal with it and it wouldn't destroy me emotionally anymore. Ha!
My psychologist friend told me once I need to grieve the old Kim and accept the new one. A mature 41 year old woman should surely be able to accomplish this, right? But, when someone tells me this is my "new normal" (oh yes, Drs will tell you that and just to "get used to it"), or that I need to accept that this is just who I am now and accept the limitations, I get immeasurably angry. My inner child turns petulant and defiant and stomps her feet saying "no!". My Drs see this as annoying and bothersome to them because I won't leave them alone. I don't know how my family and friends truly see it. I see it as pure unadulterated stubbornness. I am a taurus after all.
Is this the "correct" way to deal with this? Is this

emotionally and mentally healthy? I'm not sure of the answer to those questions, but the thing is I don't think anyone is.
One of my personal pet peeves is helpless people who give up easily. Those people who say "this is just the way it is so I'm just going to take it and not fight it". The ones who instantly say "oh this is hard" and throw their hands up in surrender without truly trying. Those who complain about something rather than trying to fix it. This pet peeve contributes to my attitude toward everything in life, so why should this be different?
This is also why my Drs find me annoying and bothersome. I just refuse to accept this life.
Now, that all sounds well and good and "woohoo you go girl" BUT I'm starting to think this is not a good thing or the healthiest way to deal with this. I'm starting to think that what this stubborn attitude does, at least partially, is prevent me from enjoying where I am as much as I could. I don't mean the little things, I'm very good at recognizing and appreciating the moments, but I mean as a whole. In life.
Is this true? I don't know, but this is what I'm exploring right now I think, and I think this might be the reason for this funk. I told my husband the other day "I just don't have anymore fight in me today. Maybe tomorrow it'll be back". But it hasn't come back. Do I not have any fight left because I'm giving up? Because I'm just too sick and tired to find it buried in my soul? Or because my brain is finally giving in and accepting all of this crap? My body and brain have called a truce?
I'm sure you can tell I don't know the answers and I don't know how to "deal" with all of this any better than I did 8 years ago. I wish I did, maybe then I wouldn't still be at war, because I gotta say it's exhausting 😉

What does it mean to be Kim?

I feel I need to clarify what not being able to get out of bed means, because I feel like I'm coming across as lazy or apathetic or overly dramatic. While I haven't not been accused of being dramatic before, it's been a while since those days. My 30s and 40s have brought with them more of an inner peace, or some would say "I'm too old for this bullshit", so really not a lot gets to me. For me this blog is very overly dramatic and whiny, but for those of you who don't know me very well let me just say this is not the me I was for the first 33.5 years of my life.
I used to travel for one job while working two jobs. People used to ask me why I didn't work one full time job and my response was always "I like the variety". I planned my wedding, a baby shower, worked two jobs and took classes at night, all at the same time, while still jogging to the gym for my hour long workout 4 days a week. After I had done my pilates that morning. It's true, just ask my husband. I used to tell people I couldn't drink coffee because I already had enough energy for three people.
I backpacked alone around Europe two times and with friends another time. I took off solo once and just drove around the western US by myself for a month. When I met my husband we used to say our motto was we "live life like we're on vacation" and he would get made fun of at work because we were gone every single weekend. I visited friends and relatives, I even volunteered. My brain was constantly moving a mile a minute and I didn't need more than 7-8 hrs of sleep to recharge. I drank wine and went dancing. I played tennis after working a full day and was always up for anything.
Now granted some of that has changed just because kids, but most of it is because of this illness.
When I was first pregnant I still worked out almost daily, until the morning sickness got so bad I wasn't eating enough calories per day to allow me to burn any extra off. I worked until I literally couldn't stand up anymore and then I was ordered to the couch for partial bed rest by my OB and here I am almost 8 years later. Yep. Life can change that quickly.

I've learned that the body and the mind truly are two separate things and they can work together or against each other. You can fight it and fight it and it's exhausting. My wise cousin once said "my body doesn't play for my team" and boy does that sum it all up. I have laid in bed truly feeling trapped inside this broken body more times than I can count. I have fought the urge to give in and give up because I'm not "me" anymore. And that is such a heartbreaking thing to feel.
I had visions of being an active working mother. I wanted to work part time while my kids were at school, but remaining working was never a question. And we had orchestrated it just so. I was working a flexible part time job, we had bought a house, time to add babies. Yeah, make a plan to make God laugh right?

So, now that you know who Kim is inside this broke ass body, when I say I can't get out of bed it means I've tried and failed. I've stood up and crumbled or fallen over, or the 7 step walk to my bathroom has left me in pain or feeling too weak to stand up. I have never woken up and said "I want to stay in bed today". I wake up, take my meds, and go through my "to do" list like everyone else, then I assess how many spoons I have and begin removing things from the list or shuffling them around accordingly. Sometimes I get up and use up my spoons doing my to dos, having coffee with friends, running an errand, doing anything I can to lighten my husband's load, making dinner and putting the kids to bed though never all of that in one day. Sometimes I use all of my spoons making coffee. And by using all of them I mean either the pain or the weakness has gotten so severe that I cannot take a step without consciously telling my legs to move, hunching over or shuffling back to bed. Sometimes the cane comes out to support my weak legs. At that point I have to go back to bed and begin trying to crisis manage my day- essentials are to find help to get my kids home from school, do whatever activities are absolutely essential- homework or things for school, things I've promised other people.
The first thing I scrap are always things for fun or for myself (no coffee with a friend, no doing fun stuff for the house, no dinner with the neighborhood girls, etc etc), little things get scrapped during  the day always (no showers, making what I wear easier to get on and off, hair in a clip, kids eating in bed with me what they can prepare, phone calls, emails and texts, making coffee, wearing no socks or slip on shoes, any sort of cleaning up, you get the picture), next I scrap time with my husband and go to bed when the kids do at 7pm. Last to go is always dinner and bedtime with my husband and kids from 530-7. This is my ultimate goal each day and is important to me. So, I feel like a good gauge of where I'm at is whether I've gotten to eat dinner with my family and put the kids to bed, because I've scrapped everything I can possibly scrap at that point, except things I've committed to other people. So, if I'm not making it out to the table for dinner you can be sure that absolutely nothing else is getting done. If I'm flaking on important commitments to other people (bringing something promised to school, taking other kids places, etc. Not just cancelling a coffee date) then we are in like Rambo survival mode. I've never, in the 8 years dealing with this, missed as many family outings and dinners and bedtimes as I have in the last 6 weeks.

Rambo survival mode is where we've been living since Nov 8 when I was hit by whatever this is that they can't figure out. We are coming out of survival mode slowly now so if you go backwards you can assess what is getting added back to my day in what order😁 I will fess up to a coffee date in the last week as I'm feeling better, just to keep my sanity and remind people I'm alive. But they have to be at the place right next to my son's school because they have comfortable chairs and is close, it must be right after I drop him off so I don't have to leave the house multiple times. There are always extra requirements to be my friend which is why my friends are doubly amazingly awesome.

So, hopefully that clarifies where we are at and what it means a little clearer than "I can't get out of bed" and we're "hanging in there!" Which basically means hanging by the skin of our teeth.
😁

Lumbar punctures with Dr Frankenstein

Large needle in your spine anyone?

As it turns out lumbar punctures are not as fun as you'd think. Actually the procedure itself was no big deal but the complete surprise of the "lie flat for 6-8hrs, drink lots of Gatorade and coffee, no more driving today and you'll have a headache for about 48 hrs" instructions when I was finished left a lot to be desired.
Being the irrational optimist I am, and also maybe not so bright, I assumed it would be no big deal and I'd just go about my day picking up my kids at school, etc.
Fast forward to me frantically texting my mom friends to beg for someone to pick up my daughter. I had elaborate plans in my head at one point, but lucky for me my fabulous friend H saved the day AGAIN and simply brought R home to me where she watched TV in my room next to my pounding head. I guess having fluid removed from your brain and spine is a slightly bigger deal than I anticipated.

So it's been about 30 hrs and I can keep the headache mostly at bay now, as long as I don't move my head. Also my head does not feel like it will completely explode whenever I get up to go to the bathroom now, it just feels like I'm wearing a really really tight hat and like that "slept wrong, can't turn my neck" feeling. So we are making progress. Assuming my Dr is correct in his estimation we are planning to go to a movie tomorrow as a family.

Next week I will have the results of all of the tests, but so far they are really showing nothing, so the frustration level in our house is inching up higher and higher.
Plus, it's just sad when you've had so many tests your husband says he wants to celebrate now that you've had the last one.
I swear I won't go back to the Drs or that hospital for a really long time if they can just figure out what the hell is going on with my body.
I feel like I've heard this somewhere before....

Oh, on a side note check out the super cool/scary ass door to the procedure room.... He liked my joke about Frankensteins procedure room but it turns out it used to be used for old school x rays. Crazy!

 

Smiling because of a 7 yr old dreidel shark

So, it's Hanukkah! For those who aren't aware my husband is Jewish and I am not, so we celebrate Hanukkah AND Christmas. Translation: our kids are insanely spoiled at this time of year.
Every night we light the menorah and the kids open a gift, for Hanukkah they are usually small like a game or book, we eat treats and latkes and say the prayer. I love this tradition and I love that my children have the experience of both. I don't love listening to it all happen from my bed.
For obvious reasons we can't light the candles in bed, and a couple of the nights I have not made it out for that, the gift opening or treats.
Watching my 4 yr old light the menorah and say the prayer in Hebrew with the Christmas tree in the background and a blue and white Santa hat on my husband's head is a sight to behold and one of my favorites.
But this post isn't about how sad I am to be missing it, it is just about appreciating the little things at this time of year. And always. Appreciating how special and precious our kids memories of this time will be and the simplicity of a game of dreidel on a Friday night (when your 7 yr old takes you for all your Hanukkah gelt!). I think my situation has made me see and appreciate little things more because they have become so difficult for me to do. It seems so simple and easy to go out to a dining room chair and sit with my family for our traditions, but it's not. And I'm not the only one for whom this is true by a long shot. But even if I have to just listen from my bed, I am working hard tonight to remember that I have these seemingly small things to smile about and they are actually the sum of what life's about. 

So, I lie here trying to pull myself out of this funk I've been in the last two days and choosing to focus on the smile.

Happy Hanukkah!