Life, Death, and Everything Inbetween

About six weeks ago, in the lead-up to being admitted to hospital, our family suffered a painful loss.

Our family is small. Sure, I have cousins and aunts and uncles, but I could walk past them on the street and not even recognize them. Those I can truly call family are rare and precious. For the most part, it's just the three of us, but there are a few extended family members who I consider truly a part of my family - not just strangers I'm related to.

On the 11th of March, my Great Uncle passed away.

Mum lost both of her parents as a teen, so her aunt and uncle became honorary parents, and in turn, honorary grandparents to my brother and I. Her brother, supposedly my uncle, was already married with kids, and they lost contact while he went to live his life and mum was left to pick up the pieces. Even at the funeral, she barely recognized him, and he was taken aback when she eventually recognized and went up to speak to him.

Apart from my Great Aunt and Uncle, I had grandparents on my father's side. My Grandma passed away when I was a baby, just a year or two before my dad. My Pa passed away when I was 16, and since then, I've feared the day my Great Aunt and Uncle go.

The guilt is nagging. It's got to be at least a year since I saw him. Ever since I was diagnosed with COPD and Bronchiolitis Obliterans, I've had near-constant infections, and not wanted to risk getting him sick when his health's been so fragile.

The worst part, is that I couldn't get to his funeral. It kills me. I put off hospital as long as I could, hoping I'd be able to get there, but on the 21st of March, the day of his funeral, my breathing was so bad I couldn't safely stay at home any longer, and couldn't walk for long enough to be able to push myself to go. I posted a couple of pictures on the online tribute though, and I wanted to share them with you guys.

I'm planning to go visit my Aunt this weekend. I feel terrible that it's taken me so long to get over there, but the past few weeks seem to have just been hectic. I'm worried I'll crack and start crying on her, and I really don't want to upset her. There are so many tears that haven't been shed, and I'm worried I'll breakdown when I see the empty corner where his armchair once sat.


As for everything else, I didn't want to bring down the positivity the last post seemed to have, but I hadn't gone to an appointment in two weeks - including the psychologist appointment and MRI I was supposed to have. When I saw the dietician this week, it was the first thing she asked about as she clicked through my notes.

  "Oh! And your appointment with the psych's this week?"
I covered my face with my hand  "It was last week"
  "How did it go? Did you go?"

I shook my head, and told her that was the main reason I didn't see my GP either - because I don't want to deal with anything, or think, or talk. I don't want to hear her disappointment that I cancelled the psychologist again, I just want to close off and hide away. I mentioned that the psychologist was also a financial strain, and she said she'd talk to my GP, let her know what's going on and find someone who bulk bills.

I ended up forgoing my regular coffee beans, and instead spent the money on a big jar of instant and the appointment with the dietician instead. Otherwise, it would've been a month with no appointments with anyone, and I couldn't make it that long without support.

As for the MRI, I found out last week that the 'sedation' they offer is just lorazepam, and I'm to just take my own meds since I take it every day. I'm hoping when I do see my GP, she'll be able to offer me something a bit stronger, since I don't think lorazepam will be enough (or at least, not at my regular dosage). Being stuck with my head in a tube with loud noises for 40 minutes with little-to-no sedation, having to stay perfectly still? I cannot see that ending well.


Tomorrow is my birthday. 23. I'm really not too sure how to feel about it. I don't have any plans, except for maybe going out for dinner with the family, or even just having a few quiet drinks at home. The joys of having an entirely online social life.

My dear Great Uncle

As a baby, he was the only one who could instantly
stop me crying as soon as he'd pick me up

xxBella

Bushwalking and Baking

It's been a while since I've gotten out and about in the great outdoors. So when my brother mentioned heading out to the You Yangs for a walk this weekend, I decided to keep him company and go along. It has been over a year since I've been on a decent walk (this sounds terrible, but I just don't get that much walking in around the house).

The three of us headed out, and spent a little over 90 minutes doing a trail walk. Mum threw in the towel at halfway, and waited for brother and I to come back with the car after we were done.

And for once, I actually managed 10,000 steps in a day! Most days, I'm lucky to make 500.

I've also done a bit of baking this week, for the first time in ages.

In hospital, most days there would be fresh scones for either morning or afternoon tea. When I got home, I found I really missed having my scone with jam to look forward to, no matter what the other meals may be like. As far as baked goods go, scones are probably one of the least scary, so I decided to keep them as an occasional part of the plan.

I bought a few scones from the bakery for the ease of having nutrional info provided, while I brainstormed how to get an accurate count on homemade ones. Kneading, sprinkling with flour, even just touching dough, all make an accurate calorie count difficult. Then I had the brainwave to use our Magimix food processor. I could weigh all of the ingredients straight in, dump the dough out onto a baking tray, and just pat it together gently with gloves on to shape it, and I could weigh all the dough that got stuck to the food processor, gloves, knife, etc..

I also made ANZAC biscuits, which went down very well. For you non-Aussies (a.k.a, 99% of you), ANZACs are popular biscuits dating back to World War I (supposedly sent to soldiers by their wives) made with oats, flour, coconut, sugar, butter, and golden syrup.


Tomorrow is ANZAC day. I was considering going to a dawn service for the first time, but given my lack of outings in the past couple of years, it might be a bit full-on with all the people (tempting as it is to drink booze at dawn).


xxBella

The Ultimatum & Sleep Deprivation

On Wednesday I had another EEG done, as further investigation into the seizures. This time, it was 3 hours long, and required I stay up the night before so I'd be in a sleep deprived state with a higher chance of abnormalities in the results. They stuck electrodes all over my head, and I just leant back in the recliner, pulled the blankets up, and killed the time reading.

I've had a terrible time sleeping this week, not helped by withdrawing from synthetics and insane coffee consumption. Last Sunday, I stayed up all night, slept Monday night, stayed up Tuesday for the EEG the next morning, slept Wednesday and Thursday night, stayed up Friday night marathoning the new season of Unbreakable, and slept last night. So essentially, I've only been sleeping every second night, and staying up all through the day.

On Tuesday, the dietician weighed me for the first time in a couple of months. At home that morning, I was 44.3kg (97.6 lb, BMI 12.8), and 45.2 clothed on her scales. Even though I've gained back a couple of the kilos I lost in hospital, where it got as low as 42 (92.5 lb, BMI 12.1), it's actually the lowest weight on record. Before AN, the only time I remember being weighed was after my big OD just before I turned 13, which is over ten years ago now.

She asked how I felt about it, and I told her I probably don't want it to drop much further, as my GP would intervene, but I also don't particularly want it going back up.

I also took my full set of measurements, so I've updated my stats here. I tried to use my body fat percentage monitor, but it said I was outside the measurable range (which is bullshit, because it's supposed to read from 4.0% - 50%).

I mentioned before that my coffee consumption has been slightly insane. After being on instant for nearly two weeks in the hospital, I hit it hard when I got home. I'd been drinking up to 20 cups a day in hospital as a substitute for smoking. Whenever I wanted a smoke, I'd make a cup of coffee. When I came home, I went through a kilogram (2.2 lbs) of coffee beans in seven days. Usually, it'd last twice as long. But I've been drinking lots of coffee and smoking lots of cigarettes, which has kept me off synthetics for over a week now (which mightn't sound like much, but it's the longest I've gone in... probably a few years now, with the exception of hospital) and keeping the natural stuff (mostly) to after dinner.

I've had a hard time motivating myself to do much these past few weeks. It hasn't helped that, when I left hospital, I was taken off the PRN oxazepam, which had been my lifeline without smoking. My GP gave me some when I caught up with her, after much begging and pleading, but only once a day. She also wants me to choose between the lorazepam and the oxazepam, when The Lung Doctor Man had me on, and recommended to my GP, both.

She said the benzo situation might change when I start seeing this psych, but I don't know when that will be. It was supposed to be this Wednesday coming, but being the day before payday, I don't have that kind of money just sitting. So it was cancelled.

I'm absolutely dreading facing my GP on Thursday.

Mum said  "Move forward or move out."

But frankly, my health is no more of her business than her's is mine, and I don't really care to discuss my health with her at all - mental or physical - as it just leads to arguments.

This weekend, she's gone away to visit her friends for a couple of nights, which is a much-welcomed break for both of us. I've just spent it quietly on the couch, marathoning Disney/Pixar movies and re-playing Terranigma for the millionth time on SNES.

This week, the dietician is away, and then I see the GP on Thursday for our regular catch-up. Next week I need to see the nurse to get my tongue frenulum piercing taken out for the first time since it was pierced 6-7 years ago (because going to my piercer in the middle of town is out of the question), because it's in too awkward a place to get my hands in, and I have a MRI next week.

The GP mentioned bolt cutters.

Eek.

Billy and Misty actually sharing a chair when I got home

xxBella

Follow-Up

I've been home from hospital for a little over  week now. I've been trying for write for a few days, but it took me until this afternoon to even get started.

When The Lung Doctor Man gave me the all clear to go home, he said he'd talk to my GP about increasing my dosage of lorazepam. He told me about how, in the old days, that' why people smoked cigarettes - to deal with their anxiety, the same reason I smoke both tobacco and other things. Then benzos entered the scene, but no, they were bad because they're addictive and you become dependent on them. But, as he said, it's better to be on a higher dose and risk addiction/dependency than be to bee to anxious to function (or smoking to deal with that anxiety).

But when I saw my GP this week for follow-up, she didn't seem too keen to raise my dosages. I had to beg and plead for her to give me a script for PRN oxazepam like I'd had in hospital, just to try for the next two weeks until I see her again, because I feel it'll be a huge help in cutting back my smoking. But she wants me to choose one or the other, lorazepam or oxazepam, because otherwise I'm going to start pushing it with the government. Which sucks, because ideally I know which combination I'd like to try.

Maybe things will change when I start seeing this new psychologist. I was supposed to go with my GP to meet her last week, but due to obvious reasons, it had to be postponed. Now it's set for the 20th. It was going to be this Wednesday, but I'm already booked in for a 3-hour sleep deprived EEG (follow-up on the seizures), and so may not be in finest form by the afternoon, and the week follow it is a MRI (again, because of the seizures).

I also saw the dietician this week. She let me off the hook for weighing for one more week, which I'm thankful for given I was bloated and blocked up since leaving hospital and no longer having IV antibiotics constantly flushing me out.

As for food, breakfast and lunch fell off the cards as soon as I got home, though I'm trying to keep up with lunch, dinner, and two snack. I'm struggling to pick up the supplements again since getting home. In hospital I was at least having a little 150ml Milo with breakfast most days.

I'm slowly settling back into routine at home. I'm really struggling without the extra PRNs, but I'm just taking things one day at a time, one hour at a time, one moment at a time.

For now, my focus is just on getting through each day, preferably with the least stress possible. Keep food going in. Try to do some sewing. If I can get through until after dinner without smoking, great. If not, then at least I tried my best, and will move onward and upward tomorrow.

tl;dr, I'm not dead. Thank you guys who checked in.


xxBella