Warmth, confusion; humidity and heartbreak

My husband is a rockstar in so so many ways. He's patient and kind, compassionate and funny, smart and sexy, aaaaannndd he's a rockstar at work! This last one comes with rewards! This year that reward came in the form of a free trip to Cancun, Mexico for 6 days without children. Yeah, I know.

So this was me, for 6 days. It was heaven. It was relaxing and warm, we got to swim with dolphins, swim and hang out with wonderful people from his company.
Most important of these for the purpose of this blog was the warmth. The temperature hovered around 86-89F and the humudity stayed at 80% or more the entire time we were there.
For some reason this combination was magic for my body.  My pain level that is usually a 5 or above (See chart) and prohibits any sort of non
essential activity, was at a 3 the entire time. This may not sound like a big deal but it is the difference between "no I need to lie down", "I just can't move today" and "I'm so exhausted" and "Yes, I do want to walk along the beach with my husband in the moonlight", "yes, I do want to play pool volleyball"(!) and "Yes, I do want to swim with dolphins". I even said to M on the flight home "I felt like the old Kim again".
It was incredible and confusing and heart breaking.
Let me explain.
I am not complaining about our trip, quite the contrary, it was perfect. It couldn't have been better. I was more relaxed than I've been in maybe years, and we actually got to spend time together as a couple and not parents for the first time in years.
What I mean when I say confusing is the obvious "Why do I feel good?". It's confusing. Is this the power of suggestion? is it just because I am relaxed? the sleep? the weather? and on and on with the worst being is it really as bad as I think it is normally? I would wake up in the morning waiting for my body to come awake and let me know where and how bad the pain would be, but the usual "Don't even think about getting out this bed sister", was merely "here's a little achiness and a bit of stabbing in your back, but if you get up and move around you'll be ok".
I would go to the beach figuring that would be my only activity for the day, planning to go back early and rest while M spent time with the others, but that didn't happen (until the last night, but that was more just desire to stay in the room honestly). I went to the beach for hours when M was in morning meetings, then moved to the pool where we spent hours talking to friends laughing and sitting on an uncomfortable lounge chair with no back, then we went back tot the room where I showered, did my hair and makeup, dressed up in my new dress and high wedge heels and we went to the big banquet, where I sat next to his boss and chatted like a normal person unphased by the day's activities. In my real world, one of these things would be all I could do for the day; one would knock me down for at least half of the day, if not the next day too. In my real world I would have been doomed by the time I hit the lounge chair just walking down from the room. Walking in sand is generally a challenging and destructive activity for my body, this trip it was not even a small issue. Lying or sitting in one place for too long is avoided at all costs at home, here it was my activity every single day as I listened to the surf and read an entire book from cover to cover. Reading traditional books takes an extremely ridiculous amount of time at home because the body positioning required limits how long I can read in one sitting.
It was a glorious glorious time.

Heartbreaking may not make sense, but it is because of that simple phrase, "I felt like Kim again".
At the time I didn't think about or acknowledge the gravity of this statement, and even when it hit me I tried not to dwell. I wanted to be able to tell myself that it was just a phrase and it meant nothing other than what it said. I did feel like my old self again. The old Kim loved lying on the beach reading, probably as much as anything in the world. The old Kim loved being active, playing games like pool volleyball. She loved exploring, like we did when we drove, in torrential rains, to the town of Cancun to wander sopping wet through the streets. Many of you may not see the significance of the statement. You may think I'm reading too much into something innocently said. But remember, we are in the world of chronic illness and pain now. Words have different meanings here. Phrases said in the world of the "typical" carry new weight in the world of the chronically ill. And yes, just in case you were worried,I will tell you why.
"I felt like Kim again" doesn't merely express how I felt in Mexico. It shows that, as much as I thought I had, I still have not come to terms with this being my life now. I haven't accepted that I am never going to be that Kim again; that my life has a different look and feel now. I had actually begun to think I had accepted this new life and believed I was in it making the most of it. I falsely believed I wasn't longing for the days before I got sick, I wasn't secretly holding out hope that one day it would magically disappear; that the treatments were going to eliminate the diseases despite what my Drs and education told me.
Apparently I was wrong in these beliefs. At least partially. This made me realize that I do still harbor those hopes, and that I am still not 100% in this new existence and this new (but definitely not improved!) body. And true to form, this glimmer of hope I experienced in Cancun has me once again looking for a solution just like I did in the beginning. I have now looked up and charted the weather and pressure in Cancun while we were there and compared it to the weather where I live. I have seriously considering moving somewhere I can feel like that again and more often. It's delusional to say the least, but hey it happened then, why can't it happen again?

I enjoyed Cancun as much as humanly possible, and I am extremely grateful that I did feel good truly enjoying the vacation and taking some of the burden from my rockstar husband for a few days.
I am thankful I could remind myself and my husband of the days before this endless stream of Drs appts and tests.
But, with that came the caveat that I would take a step back in my constant pursuit of acceptance of this Kim. Believing there's a purpose to these challenges and being truly happy in this new body is apparently still beyond my reach.
The psychological aspects of chronic illness still rear their ugly head, and just when I think I'm on my way to beating them, or at least living with them side by side, they pull ahead in the race and I'm left standing here wondering what the hell happened. It's difficult to realize and accept that not looking back is much much harder than you think, and moving forward is painful, causing acceptance to always be just barely out of your grasp.
So.....is there a sideways?

My lungs felt left out

So, little man has been coughing for a while (several times in my face) and suddenly I lose my voice on Sunday. By Wednesday it's clear it's getting worse, not better, and I call my nurse to get an inhaler for what I know is asthmatic bronchitis. I've had it before, usually once a year. This time, however, I'm on the famous, duh duh duh, immunosuppressants. 

So, like everything it seems lately the complication and PITA factor goes way up. Wednesday night is spent in urgent care with my ever present and supportive husband, while our amazing neighbor sits at home with our sleeping babies. 

This Dr at least gets it. It doesn't take a lot of explanation and clarification to get us where we need to be. Anything involving the lungs they immediately freak out and check and watch for pneumonia, and any sort of illness is treated to the Nth degree. But, at least he agrees to wait on the chest x Ray since I  reached my max radiation dose like 2 x-rays and a CT scan ago. An hour later we bid farewell to sweet, funny and compassionate Dr Peterson with antibiotics, an inhaler, prescription Mucinex, narcotics to suppress the cough reflex and prescription Tylenol for the chills and sweats I'm lucky enough to be experiencing as well. I don't get fevers, my body indicates infection with chills and cold, clammy sweating. It's very attractive. 

And here we are again, spiraling down and out of control because of a tiny little thing called bronchitis. Anyone else could stay in bed a few days, take some cough medicine and move on. I get antibiotics, ordered to rest, get much sicker than a normal human with an immune system would and suddenly lots of Drs pipe up with opinions and questions. Do we stay on this immunosuppressant? Change to another? I must be monitored closely until my next dose in two weeks. Am I getting better or worse on these particular antibiotics? Drs check in daily to make sure I'm alive. No joke. 

It's a big ol pain, but I can be grateful for my wonderful and watchful team of Drs. We've been lucky in that area for the most part. 

And once again I'll beat this stupid germ causing me spastic coughing. I just wish once I beat one thing down nothing else would pop up for a little while! 😋

Until then though, I'll be right here. Again. Because man this bout of bronchitis is making me really really tired. And, you know, I live in this bed. Good thing it's comfy!