Assessment, Anxiety & Christmas

I've written 1 or 2 new blogposts since my last. I can't seem to finish them. These spells of iv's followed by crashing right back down to where I was pre-ivs are taking their toll on me. I think I would do better to not go in at all. There was a time when I would think/say that simply because I didn't like the hassle. I can handle all of the hassle now. All of it. Even missing my hubby, as hard as it is.. for the greater good to have ultimately more time with him.. I can do it. But thats just not how it works. I seem to only lose time.

To top it off, having the completion of my assessment looming is becoming harder than I anticipated. I was and am looking forward to having it "complete". I will rest easier knowing that if I have a quick downfall I can be listed quickly. What disturbs me, though.. is going into this lower than I had expected and hoped. I'm scared they are going to want me listed now. I'm scared of how everyone, and especially I, would deal with that. I'm sure all of this is very common, and I know its eventual.. but I just don't know how I'll get by with the whole process of waiting, or, conversely... If I get to wait, and then get super super sick like some of my friends have suddenly.. I don't know how I'll deal with THAT.. I really don't know which option I'd rather have...And that is the bottom line of how I feel. Trapped between two terrible options.

Anyone who's had anxiety issues knows its hard. But I think the ultimate is having anxiety about being sick, when you ARE sick.. thats frustrating. I've always been logical and scientific in my thought processes, and when I'm feeling short of breath, or my hearts racing, or i feel weak or want to faint.. i can't separate CF from fear. The only clear scientific evidence I have is that these feelings occur more outside of my home than inside. They do happen here, just way less. Which proves at least 50% of it is in my head. I've officially decided to plead my case to my doctor and see what she can offer me. I only hope I am not treated like a crazy person, or someone who is "sad" or "depressed". I LOVE my life.. In fact, I love it so much, it breaks my heart that I'm losing it piece by piece.. and SCARES me.. Its all fear here, and its all about CF. I really hope theres something really good that can be done.

Finally, with all this going on in my head, we've got Christmas. The most magical and most stressful holiday of them all. Some of my worst skills are exercised at this time of year. Buying people meaningful gifts (on time), going out in crowds, bridging the gap between families and having little nit picky fights about things that really shouldn't matter. I'm praying the best will overshadow the hard this Christmas season.. I have tons to be grateful for, tons to look forward to, and a beautiful family to share it all with. I just have to focus on that, and that alone.

Role reversal

So the oxygen-at-home thing is a couple weeks old now. I've been all over the map with it. Indifferent, contemplative, upset, angry, scared, etc etc etc. . I didn't expect so much out of something I requested myself (and for exercise alone). Regardless, I wear it when I do my wii fit or my exercise bike. I wore it once walking my dog in the park, and once speed-walking in the mall. I find I feel different about it depending on who I'm with, not so much how many strangers I'm around. With my mom and sister I don't really care about wearing it, I feel safe and strong and like I'm doing good for myself. With my husband its a bit different. I feel like a burden, and like I don't want to be seen publicly with him and with O2 because it makes his life appear less 'normal' at 27 years old... He, on the other hand, doesn't seem to mind at all. He is the one who encourages me to bring it everywhere and anywhere we have to walk. I'm a lucky girl is all I know. I've just got to work on my own perspective.

This oxygen thing has got me thinking overly about transplant too. I worry a little more, and everything relates in my mind to 'what if I'm listed at that time..' whenever I'm thinking about any kind of distant plans. You would think this would have been plaguing me for longer than this, and I guess it was but it's emphasized now. It will never be easy to make the transition to 'waiting for a transplant' but I'm grateful to get some sort of acceptance over with mentally. I guess its just how I like to do things, in steps.

Finally, my grandmother has been having some heart problems as of late especially. Tonight I went to visit her in the hospital. Its been a really long time since I visited anyone else in the hospital. I had been avoiding it her last few admissions (for obvious reasons) but felt it was time to show my support, carefully. There was something extremely powerful about being the visitor instead of the visitee. Its like I needed that for myself. Maybe because of the recent implications that things are on a downturn for me, or maybe just because it made me feel like I could do something a little more helpful and important with my time while Mike's at work. It was a win-win for Gramma and me, and I hope (but doubt) she felt as refreshed and positive as I did after our visit.

Odds and Sods

I feel like I've had a busy couple of days emotionally. Nothing too extreme, really.. just feels it.

Yesterday I had clinic. I've been working a bit more consistently at my wii fit for a week or two, taken the time to drink a few more ensures, and it showed. Up a % in lung function (which still is 2 or 3 % away from where I feel comfortable) and up a pound in weight. Yay me.

I had a plan to ask about getting home oxygen. We might be flying somewhere on vacation in the next couple months so the absolute only way I am willing to do that, is with O2, since on our honeymoon my usually-generous oximeter said I de-satted to 85 on the plane. yikes. Well, as it turns out, I COULD have used the bloodgas I received during my admission to qualify me for home O2 so long as it was within a month of getting it done. I asked someone back then, and they said that ABG's taken when you are on iv antibiotics are invalid because they are not representative of the baseline value for a patient. Apparently, however, that person must have actually meant that if you are uncharacteristically sicker during an admission, its not a good idea.

ANYWAYS, so I swore (the staff in the pft lab encouraged me to) and sucked it up and requested yet another bloodgas to be taken. I got a different person this time and WOW.. I thought last time was good.. I didn't even feel the needle go in! I sat there holding my moms hand and shaking while waiting for it and as I sat I felt the characteristic chu-chug of my blood at my wrist. At that moment, E asked 'are you alright?' and I said 'yes, just hate waiting through how long this takes' and she said 'oh, well I'm just waiting for your blood to flow out enough, but I'm in there'. I was shocked. I felt nothing other than the creepy chugging thing. Actually I find clotting it up afterwards feels worse than any other part. Its icky imagining letting go of the dressing and seeing blood squirt a metre across the room. At least thats what I picture based on how it feels.

After all of that, well... technically before all of that... my nurse did her usual thing, but started with 'have you been assessed for transplant?' which I've been getting alot lately from the nurses. It frustrates me because shouldn't it be written somewhere? And why ask me so much now all of a sudden? So, I got assertive and asked the doc. She mentioned the obvious fact of my lung function (though its been relatively stable for 4 years as she later pointed out) and the conversation led all the way to her saying that she thought it was time to at least book a referral to the transplant hospital. I didn't really know how to take it. I knew all of this was nearing, but it baffles me how it had to be me asking to make her say so much. I worry for my family and how this will make them feel. My mom was there with me and she took it really well, but I told the doc that I didn't want her to send the referral right that minute, because I needed time to let us all absorb this much. She fought me, but when I reminded her that if I hadn't have brought it up she wouldnt' have suggested it, she gave in. I will allow her to book the initial meeting with the tx hospital in a months time when I next have clinic, and I think I'm goign to aim for spring for the 4-day assessment.

I've been assured that more than likely, I will not be considered ready to be on the 'active' list just yet, and that I should think of getting assessed as 'insurance'. Good, because that's all I'm ready for, but I think its healthy to get moving on this.