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!