A Litte Less Intensity...and Snow!

Doc (aka Crazy Dog) has a dog version of a snow angel that he likes to do. Here he stops for a moment to pose for the camera.

Sam chewing on a snow ball - literally his ball covered in snow! Doggie heaven.

My last few blogs have been pretty intense but this one's going to be a lot lighter.

It was a good week overall, filled with all of my new normal things - pulmonary rehab, paperwork, appointments. We were pretty much Olympic-watching junkies all week long. I enjoy most everything except for curling - check out this video to find a much better version of curling involving cats.

Is that your final answer?

Monday was a bit of a sad day. It was the day that I told my bosses that I would not be coming back to work. It was extremely difficult, but I know that it is the right thing for me to do. Still some processing to do, but I took that first difficult step. I have given myself a working title of "Stay-at-home-fur-kid-mom."

I am also finding my way quite well with all of the disability stuff. I got some much needed free legal help with my long-term disability and am officially in the queue to get free legal help from another place to apply for SSDI. That is my next big project.

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I am hoping that this round of IVs will only last for two weeks. Things are going really well - my lungs have improved quite a bit, my kidneys are handling the meds well and I think that I managed to not catch a cold that Todd caught mid-week. This coming week I see both my pulmonary doctor and my ear, nose and throat doctor to test my hearing and check in about sinus issues.

Other than that, I have been six weeks without alcohol and it has never been more difficult not to drink than when we were snowed in for two days! But I did it. I have actually been a little tempted since then, just wondering to myself why it is I'm doing this and what exactly I hope to get out of it. I'm not sure the answer, but something tells me I need to stick with it for now. And so I will.

This Is (Explicative) Insane

It's as if I've woken up and suddenly realized how insane my life is, how sick I really am. How did I last this long working and essentially living a normal-ish life?

My days are nearly completely consumed by taking care of myself: doing treatments, refilling medicines, ordering oxygen, going to doctor's appointments, handling insurance issues, boiling nebs, taking pills, going to pulmonary rehab. If going on disability is akin to retirement, this is not seeming very 'golden.'

The Disability Reality

The process of applying for disability really makes you face reality.

Here is me on paper: an incredibly sick 35-year old woman with terrible lung function who may not have long to live without a transplant. Sobering. And quite a different picture than I normally have of myself. The lawyers tell me this means I shouldn't have any trouble at all getting approved for disability. I wish that made me happy.

Where I Am Now

I am trying to come to terms with where my health is, where it is going, how much time I might have...and whether or not I want to pursue transplant. I am having a hard time picturing what life would look like after transplant. What would I want to do that I haven't already done?

Here is part of what I posted in my CF group, Older & Wiser, yesterday.

I can't shake the thought of what if I do it [transplant] and then it goes horribly wrong? And then I am dying all over again. Except that I have no idea what's going on because I only half still have CF. And I've had to go through this major fucking surgery to boot.

...When I think about what I would want to do I think of spending time with my family, especially my little nieces and nephews - OF COURSE I want to be around for them as long as possible. But they are going to lose me eventually anyway. What difference does a few years really make?

I feel like I have already done a tremendous amount with my life. I have traveled all over, I have amazing friends, I am a talented writer and I have had a relatively successful career.

There is nothing (or not much) I am eager to do that I haven't already done...although I would certainly like to spend more time doing the things I already love doing. But that will ALWAYS be the case. There will never be enough time with the people I love - ever. So I'm wondering...is this it? Am I done? Is it greedy to want more when I've already had so much?

I have progressed a little more past what I wrote yesterday. Todd and I sat down and talked about things we'd like to do if I had new lungs. That was nice. There are some things we haven't been able to do, and some things we want to have more time to do.

But the truth is, I feel like I'm running out of time to make this decision. And I'm starting to get a little bit scared.

I'm Sick - Again 

And no, I'm probably not in the best state of mind right now. I'm down, depressed, feeling mopey and defeated. I woke up yesterday with a headache, fever, chills, aches - got tested for the flu just to rule that out. I had been feeling sick/run-down off and on for the past few days. Last night I woke up with a pain in my left lung that kept me up off and on during the night. (When the lungs get inflamed, sometimes air can get trapped in the little air sacs and make certain positions and deep breaths uncomfortable.) Blah blah blah blah blah, right?

I am starting on IVs today - again - I made it a month and four days since last being on them. My doctor is increasingly hesitant to start IVs unless absolutely necessary because of my resistance (I now essentially have two virulent bugs that are resistant to almost everything.)

This is INSANE. This is what a person looks like on paper when they are getting to the point of needing a lung transplant. I am what a person looks like on paper when they are getting to the point of needing a transplant. Me. ME. Me??? It's not how I've pictured myself, but here I am.

 

Week of Wow

This past week has been one of the most intense, rewarding, thought-provoking weeks in my life.

It started on Monday with my first appointment with a new, amazing acupuncturist (Lynnea, who is also a medical doctor.) I knew that the visit would prompt positive changes, but I had no idea how badly I needed them.

Here is how it went: I arrive slightly short of breath. Lynnea asks if that is normal for me, I say yes. She right away gives me about 10 needles in my neck and shoulders while we sit and talk for the next 30 minutes, which seems to help my breathing. Over the next 3 hours we discuss my entire life's medical history (illness, surgeries, mental states, drug experimentation - everything!)

When she finds out that I am a regular alcohol drinker, a 20-minute digression ensues into the harm that alcohol is doing to my body - liver, kidneys, brain, it's especially bad for people with diabetes.

This led to a minor breakdown - and I have to say that ultimately it was more helpful than any single session in my years of therapy. Lynnea hit upon very raw and sensitive spots for me - she has a knack for finding those from what I can tell. It's not about judging me, she is speaking up for what my body wants. And, she said, I am sometimes going to hate her for it. Tough love!

There is a Chinese saying:
people with a strong constitution 

tend to abuse it.

She spelled out how my fortitude - which has done so much to help me cope and manage my disease thus far - has also allowed me to 'plow through' some other issues without really stopping to let them sink in. As in, coming to terms completely with the fact that I have a chronic disease that is going to eventually kill me. Not just my brain, my brain and my heart. This stuff's not for amateurs.

It's hard to believe it, but I think that she's right: part of that rebellious teenager sneaking cigarettes outside my bedroom window (I know, right???) is still inside me. Alcohol - not always, I would argue, but more at certain times in my life and recent history is definitely one of those times - helps me to escape. It is my escape button.

How do I know she was right? Now that I have quit for 7 days, I see all of the mental energy it has freed up. Before, I was constantly caught in these cycles of wondering, how much is okay for me to drink today? Should I drink today at all or is that bad? Fuck it, I feel like drinking today! And then...   Did I drink too much yesterday? Because I'm feeling a little dehydrated this morning, maybe it's beer last night, I must drink extra water today!  ...My body feels tired because I have been drinking too much lately - bad me! ...I was good yesterday, I only had two beers. Etcetera, etcetera, etcetera.

All of that was just an illusion - a (very successful) game that my brain had invented to avoid sometimes having to think about how difficult and shitty it can be to navigate life with a chronic disease - in part. In part, it's just that I really really love Blue Moon (and beer in general.) Which is why it isn't my intention to never ever drink again, good lord. I honestly don't know how this is going to play out, all I know is that right now I need to not do it at all.

I could go on and on...  But to wrap up this story, Lynnea had a lot of other good suggestions of things for me to try and/or ask Dr Coakley about. I was impressed with her medicine/supplement/physiology knowledge about everything! After over 3 hours of talking, she finally examined me - taking several pulses, drawing a diagram of my tongue and its various markings, listening to my lungs. I finally got on the table (which prompted a small lung bleed - what a first impression!) for a little needling and electricity. And I rounded the whole thing off with a good coughing fit for which she adjusted my chi and pretty much instantly stopped the coughing.

So back to my opening statement. Now you see how this has been an intense week - a lot of realization and coming to terms with emotions that have been hiding below the surface. It has been rewarding because I have felt better, whether it's from not drinking, pulmonary rehab or all the other good stuff I've been doing - my lung functions were up some at my pulmonary appointment on Thursday which is great!

It has last but not least been thought-provoking not only because of my internal work but also because I am being forced to begin the process of researching my options for further disability assistance should I feel that is necessary. This is not only very tedious in terms of paperwork and bureaucracy, but also emotionally difficult as well. I love my job, I love my co-workers. I am incredibly fulfilled by my work. I do not want to give it up.

There is also potentially a huge effect on my health insurance - I'm not sure all the ins and outs of this yet, but if I were to lose my work insurance (hopefully not!!!) I would be in an entirely different situation when it comes to medical insurance, prescription coverage, and, especially, transplant. So that will no doubt be a big part of my decision. It would be nice to be able to make the decision based entirely on what is best for me, but unfortunately that is not the world that we live in, Obamacare and all.

So yes: busy week, crazy week. I didn't even mention that our dog Sam finally had surgery to remove some lumps, that we are Finally preparing to see a lawyer to get our wills done and that we are FINALLY planning on starting to renovate our bathroom next week!! Stay tuned.