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?