I liken it to childbirth.
When you are actually in the throws of giving labor, in the most severe agony of your life, hollering, screaming and praying that this pain will end you would commit yourself to a state asylum before ever doing it over.
You would walk over hot pits of burning coals with bare feet. You would banish your entire sex life for celibacy so long as the terrible event that has caused you so much pain never ever happens again.
Then, somehow, magically with time, the memory of all that suffering fades.
Its images are replaced by those of your new loved one and all the fabulous events and memories you experience.
You may even do things that contribute to you going through labor again, that could wind you right back where you started, at ground zero.
You forget to the point that you even convince yourself, "Hey, that was easy enough" until, ultimately, you convince yourself into thinking, "I could do this again."
And then maybe you do. Some people have kids and suffer through labor more than a dozen times. People have started giving birth by the litter with seemingly no reverence to the minimum 18 year aftermath of love, dedication, and commitment they are signing on for.
This is how I I made it through endless chemotherapy and radiation treatments with two bone marrow transplants on the side.
I get little breaks. I have periods of relative health where I experience the world again, almost as if I am experiencing it for the first time.
Food has never tasted so good until after you have been denied its pleasure for months from nausea and vomiting just like the best warm spring day is the first one after a long winter.
Then, if I'm lucky, I keep getting those good days. I start having fun and experiencing everything like it is both the very first and the possibly last time.
With each one of thee events I grow farther away from remembering the suffering of my disease and how close I have come to dying, even how I started to almost beg for it.
I'm starting to think, "Hey, I could do this again."
That's a good thing. It keeps the fighters fighting.
However, as the memory fades the hope, or delusion, that maybe, possibly, the past was all a mistake, that all my health issues have been a big misunderstanding and have actually really resolved creeps into my being.
I begin to believe that if I can do it again, maybe it will be easier.
I think maybe if I let that cough go a couple more days, it will resolve itself despite how severely immunocompromised I am. Then I think, Well, if it develops into another pneumonia I won't spend a week in the hospital and six weeks recovering.
This is where friends and family intervene and push me into seeking treatments I really don't want or think I need or that I've been outright avoiding due to the hassle of deciding which Doctor to call whose orders I am going to have to abide by before inevitably ending up as an in-patient or in line at the pharmacy for an hour, which I think if you reread Dante's inferno is a circle of hell, where the insurance will either deny me completely or charge me a $50 co-payment for antibiotics needed to keep breathing.
The important thing for caregivers of us to know is when to intervene.
My friends and family do.
After the week we had I thought I'd probably be getting sick.
Stress causes immunosuppression to the point that during treatments I would sometimes jokingly accuse anyone of causing me stress of trying to kill me. It's like licking the slide at a playground. Stress flings open the door to allow opportunistic infections attack.
I was stressed over the probability of both Jon and I being disabled. I was stressed with his appointments and the fact that I had chosen last week to actually accomplish some WORK for the first time in a long time with a deadline.
Jon didn't have his surgery. The MRI showed a 25% tear in the middle of his achilles but the swelling and fluid interfered with the image too much to proceed with a surgery.
He is in a boot for four weeks until a repeat can be done. If surgery isn't recommended at that time then he'll start rehab.
It's going to be a difficult four weeks, especially since with the small decrease in prednisone i am all ready experiencing shortness of breath.
I emailed my pulmonologist last week but with no signs of infection we thought it was just me adjusting to the change in medication.
Well, finally Friday I started to feel sick with a head cold. A little cough kicked in Friday night, of course.
As usual any signs or symptoms waited for the weekend when it is almost impossible to access treatment, especially if your me.
By me I mean someone highly specialized with a rare, life threatening illness. Nobody that hasn't all ready claimed responsibility wants it.
I, personally, don't want to drag myself out of the house on valentine's day for the blood cultures and chest x-ray that are standard orders accompanying the levaquin I need to prevent the pneumonia that's coming. I know I have bronchiolitis obliterans. I know the pattern, but I still need the testing.
Why, again, are people questioning why health care costs are so expensive?
At least I wasn't allowed to completely forget the consequences of ignoring my body's messages. I did seek treatment. I am on levaquin. I will be contacting my team tomorrow when they are back in the office
Right now, I'm feeling beat by both reality and my mortality. I had lost touch with the world in a way I never have before this fall. I lost all concept of time and money. I didn't understand basic organization. My thoughts didn't, couldn't, extend into the future.
Now, I feel stuck between my habits of this world and the possibilities of the next, and I'm wondering how to proceed with my new experiences and understanding with reality mixed in.
Maybe, I'll just get better and go back to that blissful, ignorant place where I forget the suffering, but I'll do that after I finish emailing my team.