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!

Muffled strength

I need this one today. Some days a smile is hiding more than it is on other days. Some days the shower and bathroom heater fan can muffle the sounds of your crying. 

But then when you get out you wipe your face, get dressed, smile into the mirror and keep going.

Being strong doesn't mean never falling apart. It means that you understand that falling apart is a necessary part of growing from the trials in your life. 

Codependent relationship and a bored prisoner

I reeeaaaaalllyyyy need to be able to get out of this bed. Like really soon. I'm going to go insane.
It's like a bad codependent relationship. I need to just break it off. As soon as I can walk away.

Contrary to what some might think, people who are stuck in bed for physical reasons get really really bored. It's not like when you have a cold or the flu so you WANT to be in bed all day and it feels good to just veg.
No no no, [in my case] your brain wants to go do stuff and your body laughs and says "stop asking to get out of this bed or you will be punished".

So I get bored, yet I am too weak and fatigued (not sleepy) to get up and do anything. Oh my brain and body like to trick me and after resting a while it says "go ahead, get up, what could go wrong?" Oh, lots. Lots can go wrong. And it usually sends me right back to bed, only now in more pain and more symptomatic because I foolishly thought I could do something crazy like take my kids to school and stop for coffee on the way home for 2 mins. What on Earth were you thinking silly girl!?

         

It's quite an annoying conundrum I tell ya. I feel like I'm trapped in my body, sometimes barely able to use my hands enough to type or use my phone. Or to use my brain enough to even do the things I COULD do from my bed. 

Sometimes I'm tired too, usually from the meds. I'm starting to almost wish for those days sadly, because those days I don't mind being stuck in bed as much. But, when your brain is telling you all the stuff you have to do and want to do but your body can't even lift an arm or leg, it is as frustrating and heartbreaking as you think, and also frankly just boring!

Electrodes and Cameron Diaz

Ya know, I can take a lot. But the EEG test they did yesterday required me to wash my hair and put no product in it. Ok fine. But then they put all this nasty gel in it for the 25 electrodes they put on my head! Now my hair is sticking up like

Cameron Diaz in There's Something About Mary! Come on people, a girl can only take so much!! 😂🤣

Anyway, the EEG was uneventful except all the ky jelly, and now we have a lumbar puncture scheduled as well as a sleep test (though even my Dr admits he doesn't think that's it, just wants to cover all bases). Still waiting for the MRI to be scheduled. As a friend put it this morning "Have you had every test they offer at Kaiser yet?".

Almost! I love that my Drs are so thorough but "covering ALL bases" is exhausting 😂

So many Drs: so much nothing

To start on a good note😊 

I went to the neurologist today and when I got out of the elevator this was right in front of me. It made me smile and it made me completely change my Outlook on the appt I was going to. 

Man, it's true isn't it? I'm so thankful for the woman who wrote this on her white board today. 

So neurologist. He wasn't Ryan Gosling, but he was a very nice man who really spent time explaining and theorizing with us. (My darling hubs went with me today! He said he'd hide in the bushes if I didn't let him go. Ain't he sweet?)

Anyway, Dr Garcia. Long story short we left there with orders for an EEG, another MRI, blood tests, an EMG and a new medication to hopefully help the twitching, pins and needles and painful numbness (imagine sticking your foot in a bucket of ice water- numb pain). 

No diagnosis, more confusion, so now we're on the road to testing for "rare diseases", cuz if someone is going to have a super rare disease..... Well yeah. 

But check out the insane instructions for an EEG!!

Yes that does say that I can only sleep tonight from 12-5am, cannot drink any coffee (!!🤬), And have to wash my hair but use no product....

Gonna be fun for those poor lab people who get to see me with big frizzy hair on  5 hrs of sleep with no coffee!! I apologise in advance.

So, until all of these new tests and visits tell us something this is still my status:

        

But....

Compassion and marshmallows

Hi!
Yep, in bed on my left side. My body likes this position and almost no other. I'm in the guest room at my mom and dad's house for the holiday, so at least it's new scenery even if it's the same position!

These are the moments..... My little girl just brought me marshmallows (because she knows I love anything sugar based😁). They are making hot chocolate to drink by the fire outside. She, my little boy, my husband and my

parents are all sitting around the fire laughing and loving each other and being together. I can't get out of bed. I tried of course, but it's just not going to work. My husband and I went for lunch with friends today and a long lunch in a restaurant was awesome and needed, but it completely destroyed any ability I may have had to do anything else today but lie here.

But here is my 7 year old daughter coming in to make sure I'm ok and telling me all about what they're doing. She says she's going to bring me hot chocolate too and if I want she said she will stay in here and drink hot chocolate with me instead of outside. I told her I wanted her to enjoy this time with her grandparents so she did, but not before bringing me more marshmallows.

My constant overwhelming worry as a mother is always how is this all going to affect my kids as they grow up? I feel like tonight I don't need to worry so much about that. I may be sad that I can't physically join them outside, but man am I proud of that compassionate and generous little blonde girl I'm lucky enough to call my daughter.

Ping pong with Ryan Gosling

I love this quote. Sometimes we all need a reminder of what courage and bravery mean. I tell my kids all the time that being brave doesn't mean not being scared or nervous or anxious, it means feeling all of those emotions and doing it anyway because it's the right thing to do.
But courage I think is a little different. To me courage is an ongoing state of mind vs brave being an immediate and temporary action. If I need to do something I'm afraid of that's being brave in that moment. Living life in the face of adversity and trials and keeping your sense of humor and your self worth and identity in tact is courage to me. Obviously these are just my thoughts on the matter, but that's how I see it in my little world.

I'm not sure all that actually applies here but this quote does. Sometimes just persevering and thinking "I'll try again tomorrow" or "tomorrow will be better" can be courageous. One day at a time is my motto of course, and to truly believe that you need to see each day as an individual blessing, and sometimes even a battle, and fight it while keeping the core of you in tact. I think all of us have battles to fight, we are all courageous and we need to recognize that.

Today my battle is just plain frustrating. My mobility level continues to decrease based on the muscle weakness and neurological disconnect. I can function in spurts but then need to lie down, sometimes sleep, but mostly just turn off my brain and my body. My brain gets exhausted from constantly telling my body to do things and meeting with resistance. Kind of like me with my kids!😁

Alllllllll of those blood tests came back normal or "inconclusive". My MRI shows ankylosing spondylitis in my lumbar spine, so it's moving up, but we knew that would happen and frankly is the least of my problems right now. It showed nothing else that could be causing the severe muscle weakness, tremors and twitching. So off to neurology I go....I feel like a ping pong ball.
The neurologist only does the specific tests he wants to do to me on certain days, so I have to just wait now. Until Dec 8th. Ugh. So I'm just supposed to stay in bed until Dec 8 twitching, shaking and itching from pins and needles and going slowly insane? Yup!

For the technical Part- Lupus is not off the table but it did move down the list based on the blood tests, rheumatological causes of these problems are also still in the running, however based on symptoms and blood tests further testing is needed on the neurology end to piece together the puzzle. You may be asking now "didn't you see a neurologist just a few months ago?"
Why yes I did! He did basic 1st level testing and when the "lupus" test (really just a general autoimmune test, and we know I've got a few of those!) came back positive he sent me back to my rheumatologist and did no further investigation. And rightly so at that point in time.
Now, however my symptoms have gotten considerably worse and more serious, so it's time for 2nd level testing- nerve conduction studies and possible lumbar puncture (spinal tap). There's also another type of MRI they can do that is off in the distance depending on these other results. So, we're in a holding pattern until Dec 8. I'm not sure how we will live and function until then with two small children and me unable to get out of bed, but we have always figured it out in the past and we will again!

Now, Dr Garcia is my neurologist and he's a lovely man, but it might be nice if......