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......

Unhappy Drs, Blood and nerves

I know some of you have been waiting for an update...
I finally got my exhausted self out to my rheumatologist. It has gotten so bad that talking to her on the phone didn't make her happy. She said come see me right away.... ok..
So I did, this morning.
And she is very concerned. She did a strength test on my arms and legs and I failed gloriously. It's a routine test I used to pass with flying colors. Apparently my legs are the worst, which would explain them just deciding they don't want to move anymore.
"Please step forward right leg"
"Nah, I like it where I'm at"
"Left leg, how about you?"
"I can't hear you la-la-la"
So now it is apparent that there is a big (and annoying) neurological component to how I have been feeling. In fact a neurological problem is probably the actual cause of the vast majority of my new and alarming symptoms and my new and just frustrating ones.
So being the amazing and thorough Dr she is she wants a nerve conduction test of my legs, took 14(!) Vials of blood and a urine sample and scheduled an MRI of my entire spine. She's really a great Dr.
Now for the fun part. Spoiler alert- You can stop reading now if you want to be surprised at the end when I  get a diagnosis! 😂

He current theories are:
1. Lupus (yep its back again)
2. Neurological damage from my immunosuppressants (a very rare "side effect")
3. The benign tumors I have on my spine have grown and are pressing nerves. I totally forgot about those!
4. Some other neurological disease that we won't go into because they can get scary

If I got to choose I'd go with option 3. It would most likely require a simple surgery on my spine (hey, I already have a great spine surgeon!) To remove the tumors and I'd be on my way.
Buuutt.....That's her least likely scenario and she's only checking on them to rule out EVERYTHING.
Either way we decided I would stop those particular immunosuppressants so if that is the
issue it may resolve itself! Though they can't be certain that the Neurological damage isn't permanent and it'll take 10-12 weeks for the medication to get out of my system before we can even evaluate that one...
So as you can probably tell she is leaning towards lupus. And since autoimmune diseases like to travel in packs it wouldn't be uncommon to add another one to my growing list. I really feel like it should be stressed more that once you are diagnosed with one autoimmune disease your body will change, and probably not in a good way.
For those of you keeping score that would be 4 autoimmune diseases.
  

The good news is she's not giving up until we find out what's wrong. If these tests come back inconclusive I'm off to neurology again for further testing. 

When I got home from the Dr I was beyond exhausted. Simple tasks overwhelm me right now physically and mentally. My son is at daycare today thank goodness, but I had to find a ride home, yet again, for my daughter so I could rest. So that's what I'm going to go do now. 

So, that's how my day went. How was yours? 

What do a dermatologist, chemo nurse and rheumatologist have in common?

They are all on my schedule this week!
Woohoo! Oh wait....

The result of one is that I get to add another autoimmune disease to the list. Vitiligo. (Destruction of skin pigment by my immune system ) Not a big deal, just something to add to the list.
We'll see what the others bring to light. I'll keep you posted.

My vitiligo is currently limited to my arm, but this is an idea of how it develops.

Infusion time

Fingers crossed!

No words

I can't even. I've been absent from here because
I don't have the capacity right now to write. Partly because my physical health is so bad right now it hurts too much and is difficult to type. Partly because I just don't know what to say.

I'm not trying to alarm anyone or be secretive. There's nothing really to report. I'm just struggling. A lot. More symptoms, more specialists, more tests. Lots of time in bed, lots of hours at daycare, lots of take out.
But I'm still here plugging along, and I'll be back with an update soon!

Contradictory reactions

I am pissed off. I'm really angry today at my body, my brain, my life, my diseases, my medications. All of it. Some days I do get angry and I'm in a crappy mood. I have gotten much better at pin pointing where and why it's
happening, but still I can't always stop it. And I don't really think I should completely.
Today was a great day. Since I was so ill for so long I had to flake on my baby girl a bunch of times, cancelling things I promised I'd do. True to form she handled it like a champ showing disappointment but also understanding. (She is wise beyond her 7 years at times). So to attempt to make it up to her now that I feel 70% human again we had a mommy/daughter day on Wednesday. It was just her and I at the mall spending her birthday gift cards! (Looong overdue.... Her birthday is in June). It was a blast. Truly a fantastic memorable day. She kept saying "you didn't have to do this mommy, I understand why you had to cancel our other plans, but I'm really glad you did because this is the best day ever!". Heart, melt, tear, pride. Man I love that little girl.
So, because I have two wonderful children, today was mommy/ son day. B and I went to lunch at our spot (the kids and I always go to the same restaurant when it's just us for lunch:). He also had birthday gift cards for a toy store around the corner from there, so after lunch we headed over to pick something out. That toy store is amazing and we had so much fun walking around playing with things and looking at all the unique stuff they have. He decided on a fire station with fire truck and we were on our way. A new ice cream store had it's grand opening today and I told him about it asking if we should go pick up his sister from school and go or go just us.
"It's your day" I said.
He said, in his super cute 4 yr old voice, "I want it to be yust [he doesn't pronounce the j] you and me mommy". Heart, melt. So we got ice cream and walked around the little courtyard and swung on the wooden bench swings and just hung out. It was magical and lovely and it's been forever since I've been able to do these things!

When we got home I was not feeling well. Exhausted and I'm still having a lot of trouble eating. I get extremely nauseous at the drop of a hat and can only eat small amounts of food, plus I am still a little on

the "rundown" side of illness. Getting better slowly, but yes I let the infection go on way too long.
For some reason needing to lie down really made me mad. My little boy wanted me to play with him and I tried, I was just so tired. But, here's where it went from bad to worse. Tonight is our neighborhood movie night. They show a movie outside on a big screen at the end of summer. Our neighborhood rocks! Anyway, I wasn't feeling up to going at all, but did have a moment of "hmm maybe if I brought the comfy chair and my big blanket....". Then I suddenly realized my entire family had already just assumed I wasn't going. No one even asked me if I wanted to or could go. Have I gotten to this point now? No I didn't want to go at that point feeling poorly, but I still like to be included.... This made me edgy, combined with not feeling well and being frustrated that a simple fun day could destroy me so completely. I started to think about my family and what they have to put up with and thank goodness my kids have such an incredible dad. And how must he feel being married to a broken shell of what used to be his full of life wife, having to constantly take the kids to things by himself? This pushed me over the edge into full blown anger.
And of course rather than do anything that made sense I took my anger and frustration at not being able to be with my family more and participate in their lives, and my wonderful husband being married to an invalid, out on the very people I was feeling bad about letting down by being snippy and impatient.
Makes perfect sense doesn't it?
So here I am in bed, unbelievably exhausted and sad, nearly crying as I watched him pull our kids down the street in our little wagon. The pisser is I can't even drown my sorrows in chocolate because I'm so nauseous, or wine because of my meds. I'm too tired to even focus on a movie and physically have trouble holding a book to read.
So, good night. I'm off to listen to a book and fall asleep. At 845 on a Friday night.

I really really do try,

but some days I
Just can't. I just get overwhelmed. It's not even a conscious thing, I don't realize what I'm doing until I've had time to say "what the hell is wrong with me right now?"

Hopefully I'll be in a better mood tomorrow.

If not.....

Or more fitting....

Which came first...

Day 3

Day 4- hey I made it to the couch! AND ate dinner. Big day! 

(See the minion?)

As days 5, 6 and 7 came and went and I was getting worse rather than better I started to suspect something else might be going on. By day 8 a message was sent to my Dr, and day 9, through desperation and circumstance I ended up in the ER with IV antibiotics and fluids.
I don't know when the kidney infection started, but it ended up with me sleeping 20 hrs in a row and still unable to wake up and move. I was beyond exhausted, it's almost indescribable how weak I felt. I told M something was wrong and 4 hrs later was snuggled up sleeping in a bed in the ER with an IV, BP cuff and Oxygen sensor.

I honestly couldn't have cared less where I was as long as I could lie down and close my eyes.
They started IV fluids, took urine and blood and let me sleep. Eventually the nurse came in with a bag of antibiotics- Cipro, one of the most hard core of all antibiotics.
I remarked "Wow, Cipro, he's bringing out the big guns."
"Yeah, and it's 300mgs so it must be a really bad infection"
Uhhhh.....
"The Dr will be in to talk to you in a few minutes."

One and a half hours later the Dr did indeed come in and give me the rundown of Kidney infection and bladder infection. I was given anti nausea medication and more antibiotics to take for 14 (!) days because my kidneys are involved and with immunosuppressants that's very risky.

IV antibiotics work more quickly than pills because they go directly into the blood, and between that and the fluids I do feel slightly better today. I still feel tired and want to rest, but I CAN get up if I want to. Yesterday that was not the case. Progress!
Hopefully, as the days go on I'll feel human again soon. And hopefully this means all if this wasnt a bad reaction to the remicade that I get to look forward to after each infusion.
Wooh I'm tired now, back to bed.... See day 3 photo because I look just like that right now😊)

Recovery damnit!

 

Day 1 pretty self explanatory

Day 2 cuz yep it was our 10 yr anniversary

Day 3- just me and my bucket!

So sometimes remicade does this thing where it makes you really sick for several days after an infusion. It doesn't always do it, but I had the golden ticket this time and have been sick in bed for 3 days.

The kicker is that today was my sister in laws birthday party. I showered, feeling very much like I would pass out so I used my trusty shower chair! I got dressed, though at that point the dizziness was so bad I told M "I've never fainted, but I would imagine it feels a lot like this right before it happens", so my outfit ended up being cut offs and 2 tank tops because I didn't like the first one but didn't have the strength to take it off. Despite this less than stellar beginning to the evening, and having eaten nothing but bananas and gluten free donut holes in 2 1/2 days, I was determined to go. M walked me to the car fearing I would pass out (tried to shake him off but he laughed because I'm so dizzy/sick), and after he grabbed me a bucket and towel (I think he's traumatized by the time I decided I was fine to go to the dog show with my kids and him the day after remicade and ended up puking on the side of the freeway...... but maybe I'm wrong) We were on our way! Aaaand I threw up before we hit the bridge which is like 3 miles away. He drove me back home with both of my kids crying that they wanted me to go and they didn't want to go without me (knife meet heart). I had to walk away from their tears because I was just so sick. Yes that does suck as much as it sounds.

I spent the rest of the day tucked in bed with my bucket friend. As long as I don't eat and lie perfectly still not moving any more than necessary the stupid dizziness subsides and I don't puke.....

Can't wait to see what tomorrow brings! Usually 2-3 days is my recovery time in these instances so as long as I can get some food in me at some point tomorrow should be fine. I really hope so because we're supposed to take the kids to the pool and I really can't handle breaking their hearts twice in the same weekend. 

And today was an example of why I hate this so much and what is the very worst part of this disease. I let down people I love left and right. 

I think that about covers it today. 

Finally!

Thank you thank you thank you!! I've never been so excited to sit in a chair in a cold room with poison running into my veins!

I'm currently stuck in bed, once again on my left side since that seems to usually be the most comfortable. I can barely breathe my rib cage is so tight and muscle relaxers are doing nothing.
Every time I move it feels like someone stabs an ice pick in my back and it runs down the back of my leg, but even lying still it feels like there are hard tight balls of muscle all along both sides of my spine from my mid back down to my butt. I'm honestly surprised when I put my hand back there that I don't feel hard baseballs in my back. It is swollen but only mildly. It's amazing what the body can take.
So, cross allllll your fingers and toes that remicade takes the edge this again cuz it is less than fun! 😬

Now, if you follow my rants you know the remicade didn't help as much last time as it used to, which is part of why I stopped it, but I think this time may be different. Why yes I will tell you why! Whether you want to know or not😉. I was off of my remicade (immunosuppressant- TNF immunity blocker) for a year for my two spine surgeries. Obviously the last thing you want to do when cutting your body open and planting cadaver bone grafts and drilling screws around is suppress the thing that heals you!
Anyway, when you start remicade they do what's called an "induction period". This is a "loading" period. Meaning that they flood your body with these meds to shock and destroy your immune system, then the infusions every 5-6 weeks are maintenance to keep your immune system idle/suppressed so it can't attack you anymore. This over-loading period is important to really flood your body and make sure to take out the immune system completely rather than just diminishing it a little bit at a time with maintenance infusion doses. Make sense?
Now, after the year absence of remicade I went back on it in March 2017 and.... they didn't do the induction period! I thought it was odd and even asked about it, but I had a different rheumatologist back then.... nuff said about that.
So my new, wonderful, genius, caring rheumatologist decided that even being off for just 14 weeks is enough time to do the induction period again. (!) I mentioned my theory about that being why it wasn't working as well and she agreed that could definitely have messed things up.
But, here comes the scary part. After a time on these immunosuppressants you can build up antibodies to it. Antibodies fight and kill things in your body (anti-body). This means that sometimes after being on these meds your body will essentially build up a resistance to them through these antibodies, which essentially destroy the medication when you put it in your blood stream.
So all those fingers and toes you haven't crossed yet, cross them now and hope that I haven't built up antibodies, because the solution there is to either 1. add a chemo drug or 2. change immunosuppressants completely from the TNF blocker family (which has been successful for me for periods of time) to the interleukin (IL) blocking family, which is a newer class of immunosuppressants to the medical community and to me. So, a big ol unknown.

Buuuuuut, all that aside let's focus on the "yay!" And be excited that I get my remicade back TODAY and that it will hopefully get me out of this darn bed!
(I love you bed, it's not you it's me, I just feel we need some time apart...)

Experiments with broken glass

The irony of a disease like mine and a blog is that on your worst days, when you need to vent and write the most on your blog, your hands are too painful to actually do it. Here I am though and I'll give it my best shot.

In my great wise, pseudo scientific mind I decided to stop my immune suppressant infusions. I have been on these medications for over 3 years so I was questioning whether they were really still helping. I have been feeling awful lately, so honestly rather than my scientific mind it was probably more of my petulant child mind saying "if I'm going to feel like shit anyway why am I putting this poison in my body?".
These medications are no joke. They are extremely dangerous and can create unforgiving situations where people die within days. That's not drama, just reality. So, you can see why I wanted to verify their efficacy.
I have had very good experiences with these medications (known as TNF blockers) all along. My first medication felt like a miracle. I was in absolutely terrible shape at that point having been misdiagnosed for 4 years and simply have a 'back injury'. So, the improvement was remarkable. Sadly, that med stopped working, which is fairly common, so I switched. The second medication was inconclusive in it's effects, but the third was awesome yet again, and that's where we landed until 12 wks ago.

Now 3.5 years later I seem to be suffering from "worsening severe fibromyalgia and myofascial pain syndrome". The flare ups have been getting worse and worse over the last 6 months and were genuinely confusing matters in terms of symptoms and treatment.bit all cane to a head about 12 weeks ago when I had been amidst a, seemingly neverending, flare up and having a lot of trouble dealing with it emotionally this time. I have had a positive attitude all along and generally can handle whatever comes, but for some reason this one was really getting to me. So, finally I told my Dr as I cried in her office that I wanted to stop treatments. "If I'm going to feel like shit anyway, I don't want these medications".

Fast forward 12 weeks later and I am in bed in intense pain and unable to walk much more than you the bathroom. It feels like there's

broken glass in each joint between the vertebrae and like someone is grabbing handfuls of muscles and twisting them as hard and far as they can. The ice picks in my SI joints are getting worse and worse again.
I think the immunosuppressants might have been working.....
I spoke with my Dr today and she is ordering my infusions again. I start next week. Thank goodness.

As miserable as I am at this moment I am glad I did this. When the the risks are discussed with me, which they are every time I go in, I will start least be able to tell myself that it's working and worth it. Once again quality of life vs quantity, but at least I know now that I am choosing correctly.

11 year old lifesaver

No, not the candy kind, the kid kind.
Since my return from Maui my body has not been my friend. I seem to float out of flare ups only to crash back into another one. This time the flare up has been at it's worst for 3 days, which also happened to be when my daughter started school.
I've talked before about the guilt factor and how this effects my family more than me, and this is a shining example of that. My poor almost 4 year old has been relegated to my bed for tv shows, games and movies and occasionally to the backyard while I sit huddled under a blanket on the big cushioned chairs watching him play.
Another thing having him home during bad flare ups does is prevent me from resting. Rest does help the flare up end sooner sometimes, but it always helps my ability to deal with the pain and fatigue while it's happening.
So, as I drove home with my 4 yr old boy, 7 year old daughter, her friend and her friends sister one day discussion began about a playdate. The older sister is 11 years old and my boy B absolutely adore her. He's been in the car carpooling with her for 2 of his 4 years, she is the daughter of a close friend and a helper for our girl scout troop. So, as you can see she's spent some time with him.
As discussion of the playdate escalated B chimed in wanting a playdate with this 11 yr old girl, M. My first response was one of "4yr old boys don't have playdates with 11 yr old girls". But as M stated she'd be happy to come have a playdate a huge lightbulb lit up, albeit dimly, over my head. Would this amazing and responsible 11 yr old who I'd known for 2 years be able and willing to come babysit while I was home so I could rest?
Why yes!! Genius! I told her I'd pay her a little, though her mom told me not to, and it is a bargain for my baby boy to have someone who can physically play with him and keep her eye on him (and the 7 year olds)!
B had a blast, she got to be in charge (heaven for an 11 yr old girl) and make $10 and I got to rest. Win win win!
I feel like the world has opened up with this new possibility of having inexpensive in home help!!
Saved by an 11 year old.

Hope and the land of aloha

 

Vacations are stressful for people with chronic illness. The pressure we put on ourselves is massive. Our constant struggle at home may be Sisyphean, but for some reason we get these crazy ideas that maybe new places, beds, weather, stress levels, food and everything else that goes along with vacation will somehow get that boulder to the top, at least for a little while. In my personal experience this generally creates a situation in which nothing can go right and no one can win. 

A recent vacation with my family showed me these facts in bold clarity. I had gotten my hopes up that I would miraculously feel fantastic the moment we touched down in my favorite place, so when I didn't my heart and mind were bruised and confused. Lucky for me we were on this amazing vacation for 16 days (!) with kind and helpful family and friends so I really did get to enjoy the majority of our time. But, initially my hopes seemed dashed as I felt my [lately awful] normal. 

I'm not here to moan about my first 3-4 days on vacation being miserable for me and how poor me couldn't participate in family fun times. In my view how many people go on vacation and catch a cold or something random and end up in bed the first few days, right? 

What I'm here to explore is why on Earth we continue to build up these expectations of our body's reaction to various situations? Logically, I know that for me when I get my hopes up or my projections out of whack and they don't play out the way I wanted I get frustrated, sad, depressed or devastated, depending on the situation. These emotions do not manifest themselves in happy healthy ways in my (anyone's?) world. I tend to lash out when I'm frustrated or reality doesn't conform to my expectations. I also tend to withdraw when I'm sad or depressed. As you can imagine the worst time to do these things is on vacation, however it happens anywhere I am. Anywhere I set unrealistic expectations of my body and health. Which even after 7 years is still a ridiculous number of times.

I know people talk about hope when it comes to illness, but sometimes I truly wonder how much 

hope is a good thing. You need 

hope in the big picture because without it the 

will to live is severely

damaged, but hope when it spills over into individual circumstances and situations seems to walk a very fine line between expectation and disappointment.
Is this all still intricately intertwined with acceptance? Or can you have acceptance and still experience unrealistic expectations? What do you think?