Sitting here, holding my nebulizer in my mouth, not with my teeth – God forbid, no one believes me that hours and hours of writing papers while doing my treatment and holding my neb with my teeth couldn’t possibly show a grinding-effect on my teeth.

Being in the know and not in the know – living with a person who has a long-term condition and never stepping through those doors.

I remember when I met Sheila, almost 10 years ago, I said “You don’t know the work, the stuff, the crap, the thick of it all. The bills, the time, the appointments . . . ”

She said, she didn’t care. That she wanted to be with me.

I was going through some old papers, old healthcare records; I found a letter dated in 2003. I wrote a letter to an insurance company regarding my frustration with a bill I kept on receiving. As I was reading, my voice was becoming louder with each line.

Going through those papers – I am like “Oh, the time when my state insurance got cancelled and I had to go on a different special program. The time I had COBRA for 2 months here, 2 months there, one month here and there” – usually to fill in the gap when one job ends and the next begins – that will change if The Affordable Healthcare Act rolls out effectively. I planned and panicked every time I changed a job.

When I page through, looking to see what I can shred, all I truly see is swearing. My head about to burst; me walking to someone’s office, writing letters, writing letters some more, calling, making copies, and writing out checks.

I have said this before, but I want to say again – I never had a problem getting my medications, getting treatment when I was too poor and was on the state health insurance, classified under the “Children with Special Health Needs” program. CF was still a childhood disease at that time.

My enzymes are now between $13,000-14,000 for a 3-month supply – unreal. If I had one day gap of insurance – good luck to me.

I would be an excellent lawyer probably, an advocate; but all that takes a lot of energy.

Today, though, I am truly blessed once again. I have so many blessings, so many people that have worked for me on my side. My advocates for various medicines; recognizing old names while going through those papers; and the conversations I had, them fighting for me to prove I didn’t owe X amount of money because of insurance.

I can breathe again. My lungs developed an allergy to something in our last place; maybe just from shaking up things in our place, maybe not. Our real estate lawyer said three months ago when she moved she developed a rash. But, after being in her new place for a little while, it vanished.

All of this proves once again the universe is taking care of me. Sheila really was the catalyst in this move. I eventually came on board when I started pin-pointing dates and when my breathing became more difficult. I personally believe that after we had insulation blown into our place, it trapped allergens in (maybe mildew or mold) and my lungs literally didn’t have space to breathe.

The last two days before closing I stayed in a hotel. I was hesitant to do so, but I came home from work and my lungs just squeezed. I texted Sheila and said, “I can’t do this.” The medicines helped a lot, but I think they had a limit.

And then there were 2 or 3 days, moments that I said, “This is not life.” I said a few other things, but those things usually people don’t like to hear, a lot of swearing for sure. But, since we moved I have stopped those meds and still working, as always, on mending.

Recently I have come to this awareness that I don’t want to go to my CF appointments alone- I almost can’t. Truthfully, I probably could, but the thought makes me want to vomit. I don’t know if it has to do with the actual process and I am so done with it, or when it seems the line between life and death always seems close, and you see what you want to become but are quite unsure if that is going to happen – it is hard to do alone. When one becomes accustomed to having someone, you want it always.
I look back and over the years I went to my appointments by myself, taking the hits. I just don’t want to anymore.

I was supposed to go to my CF appointment a couple weeks ago, but Sheila couldn’t get off from work, didn’t ask off in time. So – I rescheduled. Part of me is like, “I did this crap by myself for years – always upbeat, always ready to hit it out of the park – f-you, I don’t feel like doing it by myself today.” I can do x-rays, blood work, not a problem. But, I wish I didn’t have a condition where so much is dependent on how I perform. Sometimes I wish my defining diagnostic test was like a Cat Scan.

There is power in having that influence in your health, but at the same time, a lot of pressure. And all the factors are not controllable. So many which are not.

Yet, humans are adaptable. They can re-train themselves to do something or become something else; it takes time, re-wiring, rethinking, re-training. I am positive I could do it, but I don’t want to do that today.

What all this means – no idea.

What I think is that my life will take either of two roads: one in which I quit. I will get tired and will keep refusing exams, because no matter how much you test something, the results are what they are; sometimes more information doesn’t actually give you more knowledge.

The other – my spirit thrives and maybe I will get some help with one of the medication supposedly coming out. Always taking in mind, side-effects and how they can have impact on my liver and kidneys. I had a dream the other night that my creatine level for my kidneys was 5.1. For those you don’t know, that level would put me in kidney failure. Since then, I have started a liver cleanse and an overall detox. I think it is changing something inside of me. Hard to explain at this point; I have to wait for more data.

I have this vision in my head all the time, air behind a bubble – probably an aveoli – and it pushing through, opening, a force. Each step in life I think about pushing through – a force; air inside; trapped and then BAM!

There is a new energy coming, it is arriving soon. I don’t know exactly when – but it is building, this is relative to my health anyway. It has to, because I keep being told I need to get things done before I run out of time. I don’t want to put too much energy in that number, nor do I want to give it that much power. So – my strength has to oversee it. It has to look beyond it. And really, I have to do more for others, because doing more for others and giving that equal exchange between people creates an enormous amount of positive energy. Creating and giving stops the obsessive negative thought process and in-turn pushes through and organically creates harmony – in its essence. I have several ideas, and I am going to enact at least 2 of them at this time. Another challenge – that is en-route to positive change and stable health.

No matter which way, I have faith with plenty of facts to support that the universe will take care of me.

Timing, walking with the rhythm of life; listening to your gut, your experience, and always be open to the possibility of everything.

Never shut the door before it’s time.