Wednesday, March 09, 2011

No, we aren't 'getting by', we keep trying so hard

Things are difficult. Linda had to choose a week ago between food and medicine, and she chose medicine, she chose me, and so our emergency savings was used up. There is no refund from last year, and ALL the money spent on meds because the medicines which are NOT covered in Phramacare, means the amount you pay is not covered also, so no rebate. This is because Pharmacare doesn’t PAY for your drugs, it merely pays a PART of your drugs once you have NO money. And it only pays for drugs that aren't popular. Even if you tried the one drug they offer and have severe reactions to it, that's it, or pay full price. We got free samples as much as we could...and the most expensive we buy overseas. The whole system of this 'helping' people like us seems a bit 'bass ackward' to me.

So, my pain medication being doubled, and doubled again, all in under 12 weeks, each of those prescriptions cost. And each of the ‘breakthrough’ prescriptions cost. And yet, I am still in pain, enough that my hand shakes so bad for the first hour I can’t turn things on, or eat with my own arms. I often cannot move, I daily cannot speak. And that is on the ‘improved’ pain patch. But it is WAY better than before, as for example, I can sleep at least 3 or 4 nights a week now, instead of 20 minutes at a time due to the pain.

I didn’t know she made that choice until we ran out of soap, then laundry detergent, then the toilet paper got low, and no milk, or bread. No batteries, which is bad if you have say, a remote for an air conditioner that I have to turn on, or sound dampeners for sleeping, or all the other types of ways batteries are used, which when you have medical supplies, turns out to be a lot. Then the library fines can’t be paid. Also, I don't have a toothbrush, which is sort of wierd, as I always have one, but the ones which are built up in order so I can hold it and use it cost, and mine is gone (like a bristle or two). It is what it is, and I am working to sell, and also, to give Linda the time to apply. As Linda is apply for jobs, more applications in two weeks than in the first six months and for better jobs. The four temp agencies are now taking applications again.

It has been a long year and I believe a good job is there for Linda. I just need to be stable enough to stay out of her way, to let her concentrate and then recover. We finally had the VIHA RN in. She had cancelled when told I would be sleeping even though Linda has the power of attorney and representation. But she cancelled because as we found out, ‘she wanted to meet me’. Well, that day, I couldn’t speak, and she couldn’t do sign language. I had to point, with the arm that worked to each letter. ‘No deaf clients?’

‘Not at the moment?’ she said in the way people say like they are completely prepared for helping a deaf client, when it is obvious they aren’t.

‘No speech impaired?’

“Oh yeah, many of those.”

“How….” There was a pause as I had exhausted myself, and after a couple minutes I continued, “ you work with them.”

“Um, er…well different ways, you know.” She said, though I didn’t know. She said she had wanted to meet me.

I flipped over to the page to some phrases Cheryl had put in. “How are you?” I pointed to.

“Um..fine, I think I’m going to go work with Linda in the other room.”

I flipped over to, “Would you like to watch some TV?”

“No, just going to work with Linda.”

And so, I was left alone, after the demand be that I had to be there, and be AWAKE. She went to the other room and Linda said she went, “You know, she has gotten a worse that the notes from 2.5 years ago indicate. “

REALLY? I guess they don’t teach what the word ‘degenerative’ means a lot up at VIHA. So after that, and the near months of wait, we have been tasked for….the exact same tasks that we were 2.5 years ago, when they took the ‘task 2’ away – which means we can have an overnight worker.

That is important because right now, I have to be assisted HOURLY through the night, in order to sleep, and to stop from overheating. That means Linda waking up every HOUR, as she has for the last year, only more often in the summer. Which is why I go to bed later than her, and I try to make sure that she gets 4 hours uninterrupted sleep before I come, and that she naps. But now that a worker can come overnight, Linda might be able to get what I got again for the first time in two years when I got proper pain control: 8 hours sleep. For Linda, I am the baby that keeps her haggard feeling, and for me, pain is the baby that keeps me haggard.

LATE NEWS: as we left to go to the ER, the RN from VIHA called to say she could NOT make the appointment tomorrow to verify the Task 2's and would reschedule in a couple weeks, so since it goes from her to the case manager and then to Beacon, then from Beacon to the scheduler, then put into the schedule, it is looking like another 3-4 weeks before that happens.

And so, I don’t eat, or eat little or rarely, missing a meal a day, two if I can. In case we need money for toilet paper, or an emergency.

My heart isn’t holding on. It isn’t able to cope anymore. I wish I knew why. And my lungs, well the spirometer, which should be reading 600 is reading 140. That leads to feeling like I am drowning. And when you combine that with exhaustion, Linda breathes for me almost every day too. I pass out, I stop breathing, I have no CO2 reflux, I have no diaphram movement or reaction, and so she breathes for me. It seems like two hours have passed each time, when I open my eyes again. Two hours she can’t be applying for jobs. I found she is applying for 5 jobs over the next 36 hours.

And this is living, for now. I know that those who are old and on fixed incomes face this and others on fixed incomes do too. It sucks, always has. We tried calling parents for emergency help: the phone number they gave us was disconnected. Oh well, if you read this: send BREAD, send batteries, and a built up handle toothbrush.

I sent out six postcards, and four small gifts and then had to rest, for a day. It is as close to making a choice as I have now. I don’t think we are ‘getting by’, I don’t think we are even close. But I think if it wasn’t for Linda, I’d be dead pretty quick, about a week if I was fortunate. And yet, we go on, because we are both trying to make the best life possible for each other.


rachelcreative said...

I'm so sorry things are so tight and so tough for you both with the financial/work worries and going without. Good news about getting overnight care and hope that gives Linda some respite and good sleep. Wish things were easier for you both.

Bonnie said...

I just sent some toilet paper money.
I remember those days from when my dad was laid off, but we didn't qualify for any help.

wendryn said...

I'm sorry it's so bad right now. I am very glad that you have an overnight worker, though - that, I hope, will help at least a little.

I wish things were better, too, and I hope that Linda can find work soon.

Baba Yaga said...

Argh! Blogger ate my comment. & it actually was in whole sentences, with connected thoughts. Slightly terser and less connected version:

Be dratted to those who have all the means to communicate but heart.

And - the difference between just getting by and not quite getting by is enormous. I'd wish the latter on no-one.

SharonMV said...

dear Beth,
I'm so sorry that things are so hard for you and Linda. Living with illness & pain is very hard even if you have help & enough money to get by. It must be so hard on the both of you. I've noticed how wearing it is on Dennis now that he has to do more to take care of me. We are lucky that he has a job (still not full-time or eligible for benefits). I hope Linda finds work soon. Looking for jobs & the application process is very nerve wracking.
Wish I could be there. I could help watch over you in the night during my insomnia period. I will hope that the overnight worker is restored soon. Maybe that nurse will remember she has a heart. Please don't deny yourself too much, you need food & liquids.


Elizabeth McClung said...

Linda did 3 jobs tonight, and I was in the doctors up until boxing, after going to the ER yesterday, and three hours to get the heart to hold a steady charge and beat, but I got a release, after about 20 hours without sleep, which for me is like 2.5 days. I managed to skip 2 meals each of those days - huzzah, and other today. Water is good, sadly it looks I will need more heart medication (triple the dose of two types) - so, lose some meals, still end up behind, I waited until Linda was away in order for us to go to hospital ER, so that way there was no taxi fee. Go saver transport tickets!

Neil said...

Won't social services/welfare help you out? That way, you could be listed as disabled for a while, until Linda gets a job at least. Or maybe you're not broke enough yet?

I cheer for the night worker; now, can she PLEASE have a clue about looking after you??? Is that asking too much? (Possibly.)

Prayers for a job for Linda, and less pain for Beth!

Love and zen hugs,

Rose said...

What kind of batteries do you need?

I hate so much that you have to live like this :(

Elizabeth McClung said...

For batteries, the AAA are for the lifeline, the remote for the air conditioner and several other devices, AA for the rest, it is just batteries are like a week's food. I hate living like this too, but Linda is doing an interview now and still putting in applications every day - even on the day I went to hospital, she got one in, and I try to not call her, or disturb her for the main part of the day so she can concentrate.

Elizabeth McClung said...

Thanks to everyone who has helped, or is helping. It is a choice that we are both very appreciative of - tomorrow we get bread again!