A Rough Time

This is not going to be a happy blog post. Last week was a very bad week.

I had not been doing well mentally going into it - having a hard time with all of the new changes in my life (not working and getting sicker.) Then Todd left for a week, my Aunt died, I was hosting a bachelorette party at the end of the week three plus hours away. Then I came down with some kind of body ache/fevery virus for two days (less than a week after coming off IVs) during which I felt absolutely miserable. To top it all off, my blood sugars were running in the 300-400s because of problems with my pump. It was one of the lowest times in my life.

But, I trudged forward. I don't mean this in an 'aren't I amazing' kind of way but rather a 'I was so lost and downtrodden that I had no idea what else to do other than attempt to put one foot in front of the other' way.

Fortunately, my fevers broke, I started feeling better, I upped my antidepressants, I got tested and was once again negative for the flu, I said to hell with my pump and switched back to shots ... and I made it to the mountains for the weekend, which was a great success and a lot of fun.

But the best part, honestly, was coming home from the mountains to Todd. Problems don't get solved or go away when you can talk to someone you love and trust so much, but they do become something that seems somehow more manageable. Plus, you know how sometimes being able to say something out loud makes it less scary? I felt like that, too.

My moment of truth

My breathing has not been great. And I knew it was going to be even more of a challenge with the altitude of the mountains. It makes a BIG difference. I was running my oxygen basically at full blast up there (5 liters) and still not able to do a whole lot without de-satting. I took a shower and my sats went down to 80 - that's the lowest I've ever seen them at. I really had to go slow and pace myself - I felt the life of a very sick person had suddenly been thrust upon me.

When I was driving home, it hit me: my lungs are failing. They are getting worse and worse, a little at a time. I'm not trying to be negative, it's just something I feel. And the worse my lungs are, the bigger the small changes feel.

I'm scared. I'm not ready to die - who ever is. And it struck me that my brain could be so alive and yet my lungs on their way out...but I guess that is how a body works. It goes until the weakest part fails and then the rest is forced to follow suit. As intellectually puzzling as it feels, it is the way of the world.

So two things are happening. I am trying to reassure my ego with my zen self that this whole process is okay...I don't want to waste any more time or energy - precious energy! - than necessary fighting the inevitable. On the other hand, I want to continue to be the realistic, proactive patient that I am and get to Duke for transplant work-up before it's too late.

This week ends three months of my short-term disability. I can't express how frustrated I am with where I am at, with my lack of improvement. But at the end of the day I know that I have done everything I could have done that I am willing to do to get here. So I am okay with it.

Until later -

In a Funk

Today is my first day off IVs in three weeks. I sleeeeept in. It felt so amazingly good last night to pull out my port needle and take a shower. Three weeks of bathing in the sink and washing hair over the tub can really get old sometimes.

It has been a week of thinking a lot about the big adjustment in my life. I realized that I have gone from a part time job that I love to a full time job that completely sucks: I get no breaks, no vacations. (Though I can't say there are no perks iPad, iPad!!) While I've been a bit down about all of this, I think it's only natural stuff for me to be going through.

*     *     *

On a positive note, here is something that is going well for me right now: my lungs are about the best I can hope for nowadays since IVs (you might not believe it by my cough, but it's true!) I went to the pulmonary doctor last week and my numbers were up from 31% to 32%. "Thank goodness for small favors," as my acupuncturist would say.

More good things? Rehab is going really well. And did I mention I'm off IVs?? Geez, I couldn't wait for this round to be over. I did the additional (third) week since I had come down with a cold (so, kind of preventative) last week, but I'm not sure it ended up doing much. The virus ended up settling in my sinuses as opposed to my lungs. Also good: my back pain has been nary an issue lately. Awesome!

And now for some bad things: This sinus infection is slowly slowly working its way out of my system - in the meantime it is making me super extra tired. Thank goodness the headaches have stopped though.

Also, my ears are totally lit up (tinnitus/ringing) from all the Tobra I've been on. Went to the ENT this week and my hearing is diminished in my left hear but still technically in normal range. Yay for that. But annoying the stuff I have to deal with constantly now.

Also bad: I have been feeling really down this week, struggling not just with not working but also with not drinking. I don't even know why I'm not drinking. I just know that I can't right now. But when will be the time to start again?? I just want a normal life back and, in my brain, drinking was part of a normal life, healthy or not. I want to escape sometimes - can anyone blame me?! Of course not; that's why no one would ever tell me that maybe I shouldn't drink so much before I stopped.

More bad: I'm tired of not having any energy! I feel like such an old lady. Hopefully some of this is from the sinus infection but it is frustrating nonetheless. My acupuncturist reminds me how much energy my body expends just breathing. Yeah, yeah.

And last but not least: My aunt Inger passed away today. She had an aneurism yesterday and there was too much damage. It is incredibly sad - this was the woman who is responsible for much of my "shaping up" (i.e. learning some manners) as an adolescent, was responsible for me getting my first bra and was key in encouraging me in my writing by being the first subscriber to the magazine I used to create. Inger was a total character. She had the most unique and joyful laugh I've ever heard. She emigrated from Finland as a young woman and never lost touch with that part of herself. I have so many good memories of her and her family. She will be missed by many. A sad day...

L


Picture credit: Empty, publicdomainphotos.net; Owl, mycutegraphics.com; Dead flower, tanyaplonka.com

Crappy week

It's been a crappy week. My positive outlook is nowhere to be seen.

Overall, I'd say that just everything is setting in a bit more with Roger's death and all that we went through with that and then my big health ordeal. I have felt frustrated that my exercising like crazy does not seem to be paying off in terms of raising my PFTs. Oh, I know it's good for me anyway, and it's actually one of the few things that I have really enjoyed and looked forward to this week. So there's that.

This week we found out that someone in our extended family had a suspicious growth that may be cancerous. I am sort of out of the loop, but right now I think things are looking good for it being totally fine, but we will know for sure soon. It just made me so sad, so depressed. It's so much to deal with...

And I woke up on Wednesday morning with a sore throat. Whoopee! I haven't even made it to my 4-week follow up - during which I'm supposed to be doing everything possible to raise my PFTs - and I am fighting another virus. It means I will more than likely be starting another course of IVs soon unless something miraculous happens.

It's not so much the doing IVs that bothers me, it's the frustration I've felt about exercising so much with it doing no good, and knowing that I am only going to lose ground here before I can continue on that path to getting better. (I will say that functionally my lungs felt good before I caught the virus this week, and I am thankful for that even if the numbers don't back it up.)

Todd is doing okay. It has been a difficult week for him. But he is having a really great weekend in the mountains with three of his oldest and best friends and I am very happy for him. Here is a picture of a big fish that he caught. I like this picture because he almost has a smirk on his face. And also because I know that when he is fishing, he is happy.

Todd with big fish on the New River in Virginia, Oct 2012

Busy bee

I've been busy.

I am always busy, but particularly with the soap event we have coming up in a week, there has been more to do than I ever imagined. Not that I am doing it alone. But it has taken more time and mental energy than I thought.

I want to tell you about something strange that happened. First of all, my energy still is not my normal since my cold four weeks ago. It has been hovering around 90% for the last two weeks. It's enough that I'm working my normal hours, but not enough that I've been able to exercise like I would like to. (Sadly, that is the thing that gets dropped after work, errands on the way home (which sometimes seem endless), napping, and doing therapy...by then it is dinner time.)

Starting the week before last, I have found myself extremely tired after work. Like, I'm fine until I leave the office, but starting at that moment, all I can think about is taking a nap. And the 35-minute drive has seemed tedious for the first time since I started my job. It was one such day that I was driving down the highway and felt an incredibly strange sensation wash over me - it started as I-don't-know-what and ended as a panicked type of feeling. I pulled over, checked my blood sugar (which was a bit low but not enough to cause crazy symptoms), regrouped and then continued on. But what was it?

Since then, I have been getting feelings of panic from time to time throughout the day - especially when I am driving. It never escalates into a panic attack, more an underlying sense of unease or nervousness about my well being. I have noticed that it happens more often when I am tired. Afterward, I decided that I was doing too much, and that I needed to reprioritize: not work over my 5 hours per day; make sure I was getting enough rest at night and napping after work if needed; and really trying to exercise, if I had the energy.

Basically, it's how I get when it's time for IV antibiotics, only my lungs are doing great right now. I'm ready for the world to stop, or at least slow down, while I take a rest and then rejoin when I'm feeling up to it again.

My week of reprioritizing had mixed results. And let me tell you, it has been really hard to slow down. Almost like I am addicted to stress or busy-ness - how un-yogic is that! Anyway, I did manage to get more rest (napped every day after work - very unlike a healthy me) and worked less, but my anxiety has continued, and my sleeping seems (while I don't allow it) to be somewhat insatiable.

So what's going on? Yes, life is busier than usual and I have personal and family health issues I've been dealing with. But I feel like with my dad having been sick, and the pending decision about gallbladder surgery, my body is just now catching up to the emotions I've been going through for the last month...and it's not handling it well. I've also found myself feeling depressed.

I wonder if it's time to talk to a councilor - or even begin a spurt on an antidepressant (while I dislike the idea in general, I also used it before to get through a tough time in my life.) And I also wonder, if something has to give, what is it?

I know one thing for sure: I can't go on like this. And if I do end up going through gallbladder surgery, I want to have all of this unusual emotional stuff as sorted out as possible.

My goal for next week is basically the same - I'll let you know how it goes.

Sunk

This post is kind of depressing, so I thought I would put a cute kitty picture at the top. This is Lucy lounging on a beach towel. Lucy lives at Todd's aunt's house at the beach - a house with no permanent residents. I think his aunt across the street feeds her. Lucy is like her mother - Chatterbox - who was also very vocal. I love her! She is my kitty at the beach. :)

Anyway, I've been a little depressed lately. That's really not like me, normally. But it makes sense - there has been a lot going on - and so I have just been letting myself feel it. I hate to act all put-upon, but I have kind of a lot going on with just my normal life, health-wise. How much can one person take? For the past week,it has felt like a sort of breaking point. I'm honestly not sure why, I know things could be way worse, but they are just really getting to me right now.

It's hard to say when it started, but I know that when I visited my dad in Cleveland there was a sadness there about my dad's health that hasn't been there before. It is so hard to watch your loved ones struggle. Shortly after that, we learned of - yet another - one of Todd's family members coming down with cancer. And it's bad: stage four, spread everywhere. It's so sad. With both Todd and I's dads recent health problems, and then hearing about Todd's cousin, when my gall bladder issues started happening, (and the sick kitty) it made it seem much worse than it ordinarily would.

There has been a bit of good news this week: Gus does seem to have responded to the antibiotics. And I had a hida scan to follow up from my ultrasound and it came back normal. That same night, while having a grilled cheese in celebration of my good test results, I had gall bladder pains again. So I'm not at all convinced I won't still have to have it out, although it's nice that it isn't urgent and/or incredibly painful. I'm going to ask to be referred to a GI doctor to discuss what all of this means.

And there was more sad news, too. This morning I found out that my dad had to go to the ER earlier this week because of another escalated panic attack. It doesn't sound as bad as the other times it has happened, but it scares the crap out of me.

Adding to my morning, Todd and I had a stupid argument last night (I'm sure my stress added to my irritability) - things are fine, now, it is very unusual for us to fight - but it left me feeling awful this morning. Must. Not. Fight. About. Dogs. Again.

So yeah...I've been better. Today I was so stressed I was actually feeling dizzy - not good.

However, I came home from work, took a nap, and then had a really enjoyable evening with several of my oldest Raleigh friends. It isn't all bad, I know.