Monday, January 30, 2012

Desperate Times: A degenerative disease will crush ‘routine’ as it pleases

Sorry this is so short. I have only had a few hours awake each day. I tried on Saturday to go to bed early, being awake just a few hours after sleeping 14 hours. I hoped to wake, to use a prepaid Groupon to go out for lunch, to see daylight, and go to the library. It was based on my routine. It ‘should’ have worked. (oh, those dread words, ho, ho, ho)

I forgot the most important thing: that in a degenerative disease, the ‘standard’ may be mentally what I WANT my life to be, but that baseline of living will ALWAYS end up out of my control, and degenerate at any given time.

That is what happened yesterday, as I ended up sleeping, in distress, for 22-23 hours. So, for the fourth day, I am awake only 6-7 hours.

BAD, BAD NEW: Two days ago, the power connection to the portable concentrator died. This is what I need to keep breathing. It died after warrantee. Linda and I have been trying to cobble the bits and keep them going. My computer for example, was repaired at Xmas as a gift from a computer shop. If I don’t get a cord very soon, I will have to use a 20 year old concentrator which has a cord which only allows me to move about in the apartment. And when that dies, and it will, in weeks or months, or when the weather improves enough so the heat makes it unuseable, then I will suffocate.

We asked the Canadian company for inogen, and they quote $350 for that connector. Linda thinks she has found one on Amazon that will make the connection and is $28 with free shipping. This is it:
Universal Adapter/Power Supply/Charger

It is on the

I am desperate, and if you know about connector cords for the Inogen One and this will do, let me know. Linda has checked and it has all the specs and 10 connectors for all types of devices. I need it badly and I need it order right away, so Cheryl can bring it over. I wish I didn’t have to beg. I am already so thankful to so many people for acts of kindness.

I survive because of acts of kindness.

I know kindness because of the kindness I see from the years of people who helped me live this long. And I am glad, though yes, I struggle to think clearly for hours, sometimes days as the pain, I hope you never, ever have to know any of this kind of pain. EVER. And I survive, through the bad parts to the good ones because of you, and Linda and people unnamed (Who I would name but I assume you want privacy).

Let me explain about the computer (which not only is my internet access, my blog, my world view, and the DVD center.

I have a choice, I can take 20 mg of Dilaudid in order to sleep for 8 hours. And then more along with the Fentenyl while I am awake. This produces constipation and, when I oversleep, like sleeping for 23 hours, it means I wake into the first several hours of detox. And even with pills, it takes about three hours or more to stabilize. So yes, going into drug withdrawl, the very thing they show on police shows is more effective than physical torture. And it happens several times a week.

OR: I can not use Dilaudid, and can simply sleep as I can, trying to make a routine out of it, and have a ‘six by six’ week and day (six hours awake, two asleep, then six awake before a 9 hour or so sleep). I need to also exercise 1 day, and from that day, I am in pain so much I cannot sleep, or function, and then crash the next day. Plus, three times a week, I use the pills, the flax, the prunes, the whole list of six to seven things I take daily, including 2 liters of water per wake period to ensure I have empty bowels. It took a couple months to get that stabilized. But it means that a) I have 2-4 days every seven when I am in intense pain, and if I take more than 1 or 2 ‘breakthrough’ I will end up constipated, and with detox. And b) I have, if all goes well (and oft it does not) a few days a week which are ‘six by six’ and I spend them with Linda. For the four days a week, the ONLY functional pain control I have is the visual and auditory input from DVD’s or reading. To write a blog means I hurt for the hours it takes to write and for the next day.

IF I can use the computer and DVD’s for pain control, it means I can exercise, I can leave here, I can DO things. If I take the high pain medication (extremely addictive, with detox shakes and pallor) then the next step is an IV in bed. It is game over.

I never thought I would see 2012. Some days it is 30 minutes at a time to see how I will survive. But I have the intestines under control (huzzah, a 14 month fight to get a regular schedule), but have lost the sleep pattern. I force myself to exercise, but I want to be able to leave here to do something OTHER than exercise. Besides the hair cut, that has not happened for several weeks.

The higher the pain, the more I need the intensity of my frontal lobe and an enthralling show. I can’t wait 10 minutes for a character to develop when I can hardly sit still three seconds. I am watching some of the UK TV shows. The new Sherlock Holmes season 2 is coming out soon, and I am selling off about 20 region 2 and 3 DVD’s to help pay for that (if I can be awake long enough – that didn’t happen this week). Some titles, like Miranda season 1-2, there is no international seller, so I would need someone I could send the title to who would send it on to me. If you want to be that person, please let me know. If you want to give gift certificates, you just click HERE.

I wish I was in the US, with the netflix and the streaming but Canada has FEW titles that do that, and they are rather dull. I even tried to rig a ping to watch HULU but no go. I try all angles, but right now, finding a pain control, and using it, one that doesn't have immediate detox and addiction (though some series are addictive) is all I can try. I have trolled the library and have 50+ titles on hold (anyone in Victoria, put 'The Eleventh Hour' on DVD on hold - it is a pay to print to disc by WB of a Jerry Bruckheimer TV show that the library has for some reason, with only 1 or 2 people on hold - 3 episodes per disc, don't need them in order - they helped me for 3 or 4 days).

Please understand that I am, for several hours, almost insane or insane with pain. I have to scream a little, I cannot recognize people, I simply hang on. I hold on for those days when it is not like this. I don't know what people with cancer do for the pain, or how they try to keep a toe or hand in the outside world. I NEED to exercise or I will die, very rapidly. So I hold on, thanks to you. I want to survive, I just need to hang on, and also somehow do nice things, postcards, more gifts, after I have the sale. I don’t know if any of that made sense, but I have, at the computer, by the toilet (Where I spend WAY too many hours keeping ‘regular’), by the DVD’s, there are postcards and letters to remind me that people helped me, that people have been there, are there, that I am not alone, and that I MUST hang on so that I can make sure they know they are not alone either.

For those 2-3 days a week that are ‘middle days’, with books and what I have I hold on as best as I can and write, even when it seems to not make that much sense. For me, something like Game of Thrones (Amazon wishlist) or the upcoming US series like Chicago Hope or Franklin and Bash (canadian series), Eternal Law (uk) or The Practice 1 and 2 are the beacon in the wasteland between here and April.

It has been a sucky week. Suffocation is not a fun future. The pain has come too high, I have to go.


Lorna, Bob and Liam said...

Beth, we just ordered the connector. It's actually a laptop adapter, right? 'Cause that's what was linked on your wishlist.

It should arrive at the PO box late next week.

Sorry things are so awful...

Lorna, Bob and Liam

Linda McClung said...

Lorna, Bob & Liam - thank you so much for ordering the adaptor. Yes, it is for laptops but all the specs are right so it should work. Definitely beats the $365 US plus tax and shipping that we are supposed to fork over. Taking advantage of the most vulnerable is what it is.

I had a panic when the adapter stopped working. I thought for sure Beth would be stuck with the ancient non-portable one, but then remembered we have a battery charger, which is slow, but works. Beth can't work it when she's in the chair so she's kind of stuck after about 3 hours when her battery dies.

Beth, thanks for trying to express your pain. I honestly don't know how you manage it, even with the distraction of movies and books. Sometimes all you can do is moan and be hunched over. The slightest touch or the slightest noise is sensory overload. I admire how well you put up with it.

We'll keep working towards getting you outside on a sunny day.

SharonMV said...

Dear Beth,
I'm sorry the pain is so bad. Wish you could take the pills without the negative effects. So glad that Lorna & Co, have sent the adapter for your oxygen!. The sleep thing - must be very difficult for you. Right now I', going to sleep around 4-5 am & sleeping 2-5 hours. Not fun, but it's not killing me. My Lupus causes insomnia. I would rather be sleep deprived than go for hours without being able to wake up. I had a few days last month where I slept all day & also days where I dropped off constantly. I remember waking & trying to stay awake, knowing that I couldn't. It was like struggling out of a bog, then just sinking down into it again. It upset me & scared me (and dashed my schedule). I can't imagine how terrible it is for you.

Having that schedule to hang onto - that's important. And the distractions are important too. Two of my sisters gave me a kindle a few months back. I can find lots of books for 99 cents or &1.99. It really does help me on bad days.

I wish I could be there and hold your hand, read to you, be your friend.

Love, Sharon

PinkPhoenix said...

I experience this kind of struggle with routine going out the window because of my Fibromyalgia and can relate to the doing exercise only to be in bed for three days and in excruciating pain. My docs won't give me pain meds, serious ones because most of them don't work on Fibro anyways, being they now consider it a Central Nervous System disorder, so I usually just tranq myself out and sleep through the severe pain because it gets so bad that I get delusional and really do start thinking suicide is a logical form of pain management.

My lung disease isn't like your disease in the sense that it won't degenerate so fast, but I struggle because I could be alive and relatively healthy for forty more years or catch a cold and die tomorrow. Not to mention how the air outside, and air filtration systems in a building or restaurant can have me fine one minute and gasping for air the next. Still, I'm not on oxygen tanks as of yet, so grateful for that.

Its rough what you are going through that is for sure. But I had to chuckle to myself when you posted on this post or maybe its the next one and I'm confusing them that it was a "short," post. LOL People are always complaining that my posts are too long! *chuckle* But your short posts really aren't that short. *wink* Not that I'm complaining. *gentle hugs*

liz said...

Pain sucks. I am so sorry.

For $5 a month I have a VPN that gives me a US, a UK, or a French IP number. If you get one with a US ip, you could use netflix streaming.