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Sunday, March 11, 2018

I bet a furry cpap would actually work really well

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I can't sleep. 😕 I skipped a benadryl dose today, which you'd think would be a tiny thing since I'm on twice a day zyrtec, but my sinus went into overtime just before bed and now I have one of those throbbing headaches that sharply accentuates my awareness of every breath through my CPAP mask. So now I'm waiting for the benadryl to work, hopefully I'll be able to use that tonight. I'm in the middle of doubling a med dose that can make apnea worse, so if I sleep without the machine I'm risking not only poor sleep, but everything associated with my OSAT dropping into the 70s will ramp up my risk for heart strain and the resulting morning headache, not to mention the nightmares that sets off.

How many people die each year from sleep apnea? Is there any way to determine sleep apnea or sleep apnea related deaths in a year?

Yes, you can die from sleep apnea. Carrie Fisher did.

19 Celebrities with Sleep Apnea

There are different kinds of and causes for apneas, and evidence for mine goes back to a car accident I had at 19. I very likely had concussion and possible brain steam injury, with most of the scarring and pain located at the base of my skull and the top of my spine. My sleep history is alarming. I stopped sleeping more than 2-4 hours a day for about 2 decades because I was so terrified of waking up from the worst nightmares ever to wildly racing tachycardia that finally had to be surgically corrected. I described sensations that had a doctor sending me to seizure testing, which turned out normal. I grew so fearful of medications not letting me wake up that I stopped taking them completely, choosing to live with excruciating pain for several years. I finally reached a point where the apnea became so bad just during a short nap that I was unable to stand and had to crawl for several minutes before I could regain control of my body and orient enough to function. How I never had strokes in my sleep is anyone's guess, because my blood pressure goes insanely high while that is going on, despite regular blood pressure medications and otherwise healthy lifestyle.

In short, I am very high risk for not waking up one day. My CPAP machine cannot force me to breathe with this kind of apnea, it can only encourage it and keep my oxygen levels high enough to keep my brain from failing so quickly, and hopefully make it easier to keep healing. Doctors have told me this kind of apnea can increase brain dysfunction and damage, and even though by regular standards I stop breathing far less than other apnea patients, I simply don't restart breathing as quickly as they do. I literally have reached the point a few times where I was very close to not waking up at all, and my body was fighting as hard as it could trying to get me to wake up and just BREATHE.

I'm really liking 'getting my brain back' this last year, and I'm especially liking sleep nowadays. I still don't usually sleep more than 5-6 hours a night, but it's a much healthier sleep than I've had in decades. I can tell I'm handling more activity and stress than I used to be able to handle, and I last a little longer before I hit my fatigue wall.

It would be easy to just toss the mask aside on nights like this, but I'd rather feel my sinus calm down and airway open back up again, and then start over with the mask. I feel safe with a mask on my face. I don't panic in my sleep very often any more. My general anxiety level has come down a bit, and the nightmares are nearly gone now. And looky that, writing this out gave the benadryl time to kick in. Laterz.


Monday, February 12, 2018

wizard level health management

Tossing this one over here. I probably put way too much of this stuff on Pinky blog.

The Good- I got boosted to moderator on my fave game server this weekend. 😍

The Bad- I think I've overshot my tolerance level for Nick Jr. Can't wait for snow days to stop happening.

The Ugly- Currently overlapping tamiflu and z-pack, doubling all my antihistamines (zyrtec- long acting H1, benadryl- short acting H1, pepcid- H2), requested inhaler, hopefully that gets filled tomorrow. Crazy weather changes and living in cedar/juniper country brought a pollen burst upon all the flu/crud/cold suffering in my area and there are alerts going around now about asthma can kill in these conditions. Lungs are clear but bronchials squirting like lawn sprinklers reacting to the pollen and I'm racing to stay ahead of all the wet in there, crossing my fingers I don't wind up on pred. Can't take cough meds, so I'm doing what I can not to cough, but the resulting upper torso fibro flare is real and today was charley horse hell around my entire ribcage for awhile, literally couldn't move for about an hour and just stood around attempting to stretch some of it out without triggering it worse. Ear pain has reached suckage level. Throat feels punched. Eye slime is starting to dry up, so that's a good sign. Thrilled I never once developed a fever while influenza B was active in my household.

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Tomorrow I make two trips into town, which means 80 miles of driving. Really hoping Wed and Thurs are real days off for me. I desperately need to decrust my kitchen floor and reclaim a few surfaces. Have started spring/summer planning aka it's time to watch the super sales and replace clothes wearing out. I'm still in a lot of the clothes I got before Bunny was conceived, which means most of it is over 5 years old, and as frugal as I am, I've been wondering for several months now how a particular pair of jeans hasn't poofed away like dust.

Pain management needs to happen, but I'll be taking it much slower this year. Neuro said I could double gabapentin as needed since it's a baby dose (does NOT work like tylenol or ibuprofen or opioids), but we all know I won't just sporadically do that on whims after what happened last year when he tripled my dose and I had to cut that back down. I'll be touching base with the arm/hand surgeon in March, hoping to wind back up in occupational therapy on arms for another try. Of all the things I've been assessed for, no one has actually looked at arthritis in shoulder, so this could get stupidly painful in therapy. I'm keeping range of motion ok, but losing strength and grip through the range of motion, and the pain is referring like crazy last few months. Will also be assessing feet around that time, although neuro says indication is arthritis coming on in hip joint and referring to feet. This is on top of neuropathies I've had for years from injury and flares, so I'm wrapping my head around getting a controlled burn/crash plan in place for the rest of my aging. Totally dreading going back on full meds. Most of the time I'm too busy to think about this stuff, but experience keeps tapping me for attention and reminding that putting it off too long will mean more work getting control over it later.

Have to stay healthy! I breezed through gallbladder removal recovery and a house full of flu victims last 4 months, so it's actually pretty exciting that I have gotten such good control over my health planning that I'm not the one dragging everyone else down for a change. Water, proteins, raw veg, good sleep, and taking the time to move around and keep up my stretches and nerve glosses, was even able to start walking a bit again this month. Keeping the allergens down in a house full of people has been challenging but I'm a washaholic with anything laundry, Scott compulsively vacuums, and we have HEPA air purifiers in several rooms. I know my CPAP has made a huge difference since I breathe through more filters in my sleep. Pre and probiotics are a big deal, too. Healthy gut, healthy body. As long as I control my glucose levels and keep up all the rest, I can take fewer pills, less impact on my liver and kidneys, faster healing, and now I've leveled up to fewer actual sick days for the first time in a decade, and that's with a small child bringing every germ from school into the house. I worked really hard getting here.


Thursday, December 14, 2017

try not to bend

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I am so hungry. I run into all the horrible things people write on the webs about recovering after gallbladder removal and it's just easier not to eat much. I slipped up last night and had my first 'big' meal (I'm 4 weeks out from surgery), ate 5 homemade chicken tenders and spent the night with a bit of a racy heart, like I was in distress. No pain, no nausea or anything else, but that was uncomfortable enough to slow way down on the food again today.

Oatmeal is a life saver. I eat half a serving because diabetic and carb counting (not on meds), and that pretty much controls whatever bile problems might erupt, guess it just kind of absorbs it like a sponge. I also metered out a rice hotdish for a few days with just 4 ingredients- sticky rice, canned chicken, shredded cheese, and broccoli cooked soft enough to crumble up. Stir it all together and add a little onion powder, get it all hot in the oven, and that is a great way to get a little bit of protein and veg and the rice slows everything down and kind of acts like a sponge like the oatmeal. The key to it all, though, is small portions, hold the work detail way down while my body gets used to a missing organ.


The rest of my body is screaming bored. Now that the overwhelming referred pain and constant localized clamping down on inflammation and staving off possible infection is out of the way, my body is no longer having to work so hard keeping an ill organ under control, so the rest of my cells are getting better shares of incoming basics, like fresh nutrients, fluids, oxygen, rest, etc. No more sacrificing for that crazy inflamed gallbladder, right. Except now, healing makes that area a protein hog and I'm feeling a bit STARVING FOR MEAT, lol. Thank goodness I seem to be handling a little bit of milk and cheese ok. I don't think I'll have any more chicken tenders for awhile...

So I guess this is a big deal. At first everyone was all like yeah, you'll be good in a couple of weeks. A month later I'm still running into stuff in med forums about 6-8 weeks and don't lift ANYTHING over half of what they told me I could lift after 2 weeks. I'm finding stuff like this on everyone from professional athletes to super spoonies at death's door. Rule of thumb is give it a couple of MONTHS and even up to a year (or two) to get back to some kind of normal. O_O


I don't see a lot of people writing out exactly what this feels like unless they're freaking out, so I'll point out that the laprascopic punctures combined with the air puffing up the abdomen combined with the digestive system going into shock for a couple of weeks combined with the body overall readjusting to what is basically stab wounds, organ theft, and possible complications that include little bits of fevers here and there, to me mostly feels like I did too many situps the day before and now I feel like I need to be a little more careful doing things. And if I'm not as careful as I should be, I feel it pretty quick, and trying to power through makes it worse. Like, I mopped my kitchen floor last weekend, and I felt that for 2 days kind of thing, so I laid down a lot in between chores during the week.

I've been able to get out to Walmart for some light shopping, and I'm keeping up ok with laundry and dishes, but I'm very tired most of the time. It's funny because being spoonie, even though I'm actually feeling fantastic having that inflamed gallbladder out of the way after 9 months of croaking off with it, I hit that fatigue wall super fast because recovering from such invasive surgery isn't the piece of cake it sounds like. I mean, it's way better than being sliced open, for sure, and getting to come home right away was definitely preferable, but getting a routine back has been a bit of a challenge. I haven't helped much at all with anything holidays, and I understandably pretty much stopped cooking.


Bending is the worst. Too much bending, like tying shoes or picking stuff up off the floor, is like instant bloat reaction and the rest of the day is very uncomfortable, especially to drive or sit and watch TV. Standing up feels the best, walking kind of helps if I'm not too tired, and laying down doesn't feel as good as you'd think it should. If you have any kind of abdominal surgery, get one of those long reachy clamp on a stick things that help you pick up stuff like a sock off the floor. Bending seems to really aggravate, maybe because it puts more pressure on where it's still a little swollen in there.

If you have pets or kids, they will destroy you just bumping around, even weeks later, so keep your automatic guard up and put a hand or arm up before you get bonked anywhere on your stomach. And seriously, don't lift much. Buy your milk in half gallons, stuff like that. Don't be stupid and lift a frozen turkey or a watermelon. I really don't know how people with small children survive surgeries. And if you live alone and have to walk a dog at all, you probably need to just plan on offering someone some cash or a gift card to help you with your pet for the first couple weeks.


This hasn't exactly been a piece of cake, BUT I am apparently very healthy and healing very fast, compared to the nightmares I'm finding online and hearing about from other people I know. I have been working very hard on regaining my health since 2008, the most improvement coming since 2011, with one of the top goals being to get healthy enough to survive surgeries without complications and hospital stays. I changed my diet, committed to physical therapy, started exercising, got help with my sleep disorder, touch base with mental health regularly, managed to clean off handfuls of meds over several years, and am now passing the test with flying colors. I am exactly where I want to be with my health in time for the real deal. If this surgery was done 9 years ago, I'd have wound up admitted and probably even in ICU and then convalescing for months, so it totally paid off to map out a plan and then commit to the step by step process, even though it took a long time and most of it was pretty hard.

I will be 60 in 4 years. By the time my mom was 65 she was in a nursing home. I will not go gentle into that good night. I will not bow to my fate and call it natural aging after a lifetime of sugar and intermittent bouts of heavy smoking and drinking. I refuse to own the mess I made of myself and accept it as 'life'. I want back everything I wasted and robbed from myself, and it's my job to make sure I don't become the burden I would loathe myself for being.


I am so hungry. But it's a good hungry. It's a very healthy feeling compared to the months of swan diving into any distraction I could trying to ignore the problem. I'd rather be a little hungry than in a  hospital.

Surgeries aren't fun any time of the year, but I can say first hand they suck during holidays. If you are having surgery or in recovery this month, bless your hearts. 💗 I hope it all goes well with you.

this also comes in purple
By the way, if you are looking for holiday gifts for older or challenged people, check out home medical supplies in your local pharmacies and retail stores online and point blank ask them if they need any of that, or would they like a gift card. An easy reacher is an awesome thing to have around the house, just saying. 🎄