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...)