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. 🎄

controlled crash- holiday spoonie

It's been years since I've gotten through the Christmas season without being in some level of flare up. I usually get validation in the form of a speckled ANA and 80-90 SED in January or February and wind up on prednisone for a week to knock it back down. I've been doing this so long that I can feel about where I'm at day to day, and in order to avoid an ER trip at Christmas over a solid face plant from doing way too much, I have learned to readjust my days accordingly, slowing down more or letting go of something on the list, until I'm nearly down to a crawl, but still functioning.

I've spent a few Christmases completely nonfunctional and unable to even smile and get dressed without being a huge drag on everyone, so it was easier to hide in my house and cry and try to sleep through everything I was missing. I felt too ill to get into a car to go lay on someone else's couch, and I couldn't be nice on the phone if someone was handing me a million dollars. It's very hard to juggle all the extra social expectations on top of the extra demanding physical expectations the holidays bring. Yes, I've done it all- parent president of high school marching band, a variety of fundraisers, as much school support as I could handle while still working, and eventually had to bail on this and that until I was finally just missing everything. I followed all my doctors' instructions, including handfuls of pills, but nothing replaces rest, nutrition, and common sense. During holidays, all three of those fly right out the window.

Most of surviving holidays in flare up is about balance. People think they have to fulfill social obligations. I realized over time that other people would be shocked if they were asked to be supportive of social obligations if it meant risking their lives. Every time I go into flare up, I am risking my life when I do too much and start crashing. I have lived for years with flare ups, and they don't necessarily kill a person outright, but they do cause harm in the form of wear and tear on tissues, and a person must spend quality time rebuilding that shredded tissue if they want to live a good life. Inflammation from a flare up is hard on blood vessels, the lymph system, major organs (especially kidneys and eyes), and can affect the brain to the point of making terrible mistakes in traffic, and we all know how immediately life threatening that is.

Several big things happen in our bodies to keep our balance. Hormones regulate everything 24/7, special organs continually assess chemical and nutrient levels and send reports to the brain, and the constant feedback is how we stay in a good rhythm every day. We sleep, get up, eat, get busy, eat some more, enjoy something, and go back to sleep. When we get out of rhythm we don't feel well and get jet lagged and cranky. People who live with chronic illness of any kind get bumped out of rhythm very easily, the reports to the brain get a little frantic, the brain reacts with attempts to adjust this and adjust that, but when something isn't working very well to begin with, all kinds readjustment attempts can bump into each other, cascade into a mess, and then snowball out of control. Hormones and chemical levels on blood work look more like a first year programmer failing an exam than an experienced machine that evolved over millennia.

Someone with lupus and diabetes, like me, might feel really good one day. It's the holidays! This is fun! We go on an extra shopping trip, miss a meal, grab food on the fly, stay up late with friends, don't sleep well, feel gross and eat all wrong the next day, push ourselves to keep up, shove extra coffee into our systems, take extra pain pills, and before you know it, a couple of weeks of mistakes have crescendoed into the nasty realization that we are way off course and the only way to fix what's happening in our bodies is to stop everything right now and get back on track, or even get emergency medical intervention. Being exposed to flu or strep on top of all this can result in hospitalization for some spoonies. What a dismal way to spend Christmas.

I have learned to do a 'controlled burn' and a 'controlled crash'.

A controlled burn is like knowing you're going to wreck your day, so you pack for contingencies. I take a lunch box with my own food when I go shopping. I limit myself to only so many hours of activity and then GO HOME. I've noticed 4 hours is about my max, and assume the rest of the day is screwed, I don't try to cook or clean after I get home. If I'm stuck in and out of a car longer than 6 hours, I know I'm going to crash hard so I pre-plan my medication safety net. The key to pills is knowing they do not fix anything and don't give me super powers. They are a bandaid meant to transport me more comfortably to the end of my day, they are not meant to 'cure' or make my problems nonexistent. I have dearly paid for abusing medication to keep stubbornly plowing through life, and I'm on full disability now. I would have been smarter to let go of a few things on my list.

A controlled crash is more of a long-term plan. My holiday stress starts in November and goes for at least 8 weeks through New Year's. After that I'm pretty much in crisis and need intervention. If there were no holidays, the changing weather alone would still impact my life, so I can't just blame holidays. But because there are holidays, I know I'm going to destroy myself, and I know it could get really expensive and depressing to clean all the mess up with doctors and then being stuck at home. So since I know this, I can control just how messy it gets. I can keep plowing stubbornly through, or I can map out a plan with contingencies and loop counters for smaller fails. I can let go of lots of little things and make executive decisions to control my blood sugar and my fatigue level, or I can cast my cares to the wind and spelunk straight into hellish misery and subsequent regret.

We hear people addressing depression and self harm in the form of cutting and whatnot, but we don't hear a lot about depression and freaking ourselves out with blood sugar spikes in the 300s when we reach for the comfort food other people take for granted. And then, if we have autoimmune responses, the inflammation that a glucose spike causes can trigger a flare up, and here it comes, the joint pain, the aching all over, the nasty headache, the difficulty moving around and sleeping and keeping up. And then comes the regret or self pity while our brain chemicals freak out and depression knocks us flat. And then comes over medicating or drinking, waking up with either way too high or way too low glucose levels but we're too depressed and late for work to check, and then comes a nasty morning traffic accident. I know of two morning traffic deaths in the last year directly related to blood sugar levels, both of which left orphaned kids behind. That was NOT a controlled crash. Yeah, now you see what I mean by controlled crash.

Everybody's got something at Christmas. Some people have cancer, some have funerals to go to, some are homeless, whatever. It's normal to go through depression at holidays and feel bad, but we must realize that sooner or later, everyone goes through a really bad Christmas. Or several. My mom was airlifted to a hospital on Christmas day one year. One of my children was in a hospital several hundred miles away on another Christmas having emergency surgery. Other Christmases I've been too ill to shop or wrap presents. So before we start our controlled crash and burn plans, the first thing we must embrace is that part of the PLAN is to plan on depression. Allow time outs for depression.

Normal up and down depression is nature's way of telling us we need to slow down because we're doing too much and then kicking ourselves for not keeping up. Stop that! Plan out a picnic for your depression. Make it a regular date thing. Don't shove it off and pop a pain pill when you've got time to waste a couple of hours. Let go of the world and crash on your couch. A lot of little crashes beats a nasty big one every single time. I have noticed over a couple of years that allowing for normal depression swings has a very positive impact on my more severe clinical depression. Depression, for me, is a lifestyle, so I include that in my self care plan. The key to this working is to let go of all guilt. Guilt is a control mechanism that people and society use to force behaviors. I would never dream of making someone feel guilty if they didn't play the Christmas game right, because I can imagine them crying later if I ran over their feelings and forced mine on them. We see it happen all the time. We also think Christmas day is THE DAY to be with family. What about the other 364 days? Doi. That kind of thinking isn't worth your health, capiche? We love each other every day all year long. Let go of that silly guilt. Enjoy a couple of hours of down time.

-*-*-Side note to caretakers- I know you don't get down time. I was DPA for years for my disabled mother, and my sister raised a terminal child. Find a way to do nice things for yourself. It's ok to ask other people to help you do a controlled crash and burn once in awhile.-*-*-

The next thing to embrace in a controlled crash and burn is forgiveness. If you think something has to be perfect, imagine falling and getting a concussion and not being able to finish making something perfect. Was it worth it? I'm here to tell you nothing brings reality home like a good set of stitches with lots of blood soaking everything. If you think something can't get done without you, imagine this is the year you shock all your friends being the youngest person they know having a heart attack. The world won't stop just because you do. Stuff gets done whether it's you doing it or not. Want to be around to see it get done? TAKE A BREAK. And eat something healthy with magnesium in it. Magnesium deficiency is one of the first things they check for when they do ER tests for possible heart attack. Ask me how I know this. Forgive yourself for not being superman or superwoman, forgive others for not reaching your expectations, and chillax. Just because you didn't die yesterday stressing out doesn't mean you won't have a stroke today over the very same thing. My mom had hundreds of TIAs before the big strokes started. She was right side deficit for years from stress and uncontrolled diabetes.

The next thing to embrace for controlled crash and burn is limits. Set reasonable time limits, glucose level limits, activity limits, and stick to them. I don't know about you guys, but I find it really embarrassing to wind up in an ER on holidays. I feel like I'm ruining other people's Christmas and stressing them out more and I really don't like the extra attention. That alone is usually motivation enough for me to stay on track well enough not to super crash. I've never been hospitalized, even with all my stuff, which seems to amaze a few people. I grew up very independent, raised by a father who still doesn't believe in doctors, and people who see me going to doctors all the time without knowing my history don't have a clue how difficult it is for me to get out of my house and keep trying to find ways to solve my problems with medical intervention. I feel like a guinea pig, I've hated all the tests I've had to go through, I loathe the fear (I usually have to be sedated for a simple MRI), BUT I am very very good at living with autoimmune flare ups and diabetes because I know how everything in my body works. I've known too many people who shrugged odd pain or feelings off and found out later they were in advanced stages of cancer or having severe diabetes complications or suddenly having heart attacks that nearly killed them.

One of the best inventions on the planet is a little tiny flip spiral. You can buy those in packs. Every day I flip to a clean page, put the date at the top, and then write the time when I do glucose or blood pressure checks and every pill I take. Make it a habit. It very quickly becomes second nature, and then you start noticing things. Maybe those two pills shouldn't be taken together. Maybe glucose readings are better at certain times of day. Maybe that headache or anxiety attack or cranky feeling you get starts showing up about the same time every day, and you notice it seems to be happening within so long of certain meals or activities. Or every single weekend. Once you notice a pattern, you can control the pattern. It's very liberating not feeling hostage to chaotic cosmic whim, life going out of control again, freaking out in the wee hours over something. It's very empowering to experiment with data and results over time.

Hence, a huge part of my controlled crash is data entry in a tiny flip spiral. I can tell you that I've missed taking my thyroid pill two days in a row only twice in so many years and both times I was extremely miserable. That alone snowballed several days into a ridiculous debacle, because thyroid has huge impacts on sex hormones, blood pressure, and diabetes. The headaches were out of this world, my heart thumped real hard, and the fatigue crash was pretty scary, not even going to mention menopause symptoms going off the rails. Yeah, two days was all it took for me. And I know this definitively because if a pill is missing in the spiral, I didn't take it. This has been a crucial strategy for me because I had significant brain fail for several years and my short term memory was a joke. I could have caused myself serious harm taking my pills wrong, and many people do. Medical mistakes are more common than you think. Not all prescription pill deaths are Hollywood actors overdosing. Click this if you think I'm being too dramatic. Prescription Drug Overdose in the United States Yeah, don't want that kind of crash and burn, either. You're seeing more and more why I'm calling my way a 'controlled' crash and burn.

I use my little spiral to help me set limits. If I can see cause and consequence patterns, I can control outcomes. If I can see that my fasting blood sugar is over 100, I know better than to eat sweets for breakfast, which starts the cascade for a really bad day with a nasty headache later and feeling sluggish through the afternoon, grabbing more junk and coffee, and then not being able to sleep, which in turn starts the next day off negatively before I even get started. If I have several rough days in a row going off track, I know it'll take a couple more days to get control back, and if I feel a flare up coming on, I know I need to rearrange my schedule for the week or wind up going out of control and calling my doctor. I can glance back through my little spirals and easily spot the days and weeks that went out of control.

I live on this edge in my body every single day, where things can go out of control real fast. I plan my life meticulously. That sounds like a drag, but it's actually pretty easy when I follow a few little guidelines I've made for myself. Take breaks, set limits, forgive myself, and pay attention to what I'm doing to myself. The easiest way I have found to control the cascade is to count my carbs in the first place, faithfully take my thyroid pill, and assume I'll need breaks even if I think I'm feeling fantastic. For the most part this has worked really well, but I still make some pretty big mistakes.

So a couple of days ago I made eggnog. I know I have to stop at 1/2 a cup and no more for at least an hour, preferably two hours. I wasn't feeling well because I had overdone, my brain fell out, and without even thinking I drank 2 cups of eggnog within an hour and popped my one pain pill for the day (doctor ordered anti inflammatory), then fell asleep on the couch. An hour later I woke up in crisis, disoriented, brutishly nasty headache, blood pressure spiking 187/112, weird things happening like one of my arms being ice cold with nasty spiky nerve pain shooting out my blanched white fingertips while the other arm was hot and my hand was bright red like I had been badly sunburned. My pulse was fine and my arms worked fine, so this was more like a nervous system reaction to something, but it clearly didn't seem to be any kind of allergic reaction. I finally thought to check my blood sugar and couldn't believe how high it still was fours hours after the eggnog (I usually go back into the 90s within 2 hours, so I must've gone really high),so I didn't eat the rest of the day. I'm guessing the glucose spike triggered an autoimmune reaction in my nervous system. This is not a new thing with me. Two days of severe headache and other nerve pain later, I'm kind of feeling ok again but dragging like I ran a marathon. All because I drank some eggnog two days ago.

The rest of my Christmas holiday absolutely must be revised now to a more tightly controlled crash. I feel like I'm in flare up now, my energy level is almost nonexistent, and it's up to me to get my team (family) in on not letting me hit the wall now before Christmas. No extra surprise favors from gramma on top of what I've already mapped out, no more exciting hustle and bustle, the plan now is to coast and stay on track with small meals and lots of rest. NO GUILT.

It's easy to forget all this when I'm feeling pretty good. It's easy for my family to forget all this when they see me feeling pretty good. But I've been kinda cranky lately, which is my typical warning sign that epic fail is ahead. I have to remove myself from the game board immediately. I did pretty good this year getting stuff done up to this point, and I'm going to focus on that and not moan about what I didn't get done. Getting 'done' with stuff before holidays isn't worth risking our lives. Capiche?

I've had years of practice. It never gets easier. It never stops being scary. But at least it's not hopeless any more. It's no longer a crazy scary scream ride that I'm clinging wild eyed through. It's more like a merry go round I can step off of and watch from the sides. I don't have to feel sad about it, because I've learned I can still enjoy it while I take a break. I don't have to be involved to enjoy the holiday. I can be glad I'm still here to see it happen.

That, my friends, is a controlled crash and burn. It is my Christmas gift to you if it's still a big crazy ride for you and you are alone screaming through the night on the internet looking for answers and feeling like your Christmas is spiraling in flames. Take a deep breath and put 'tiny flip spiral' on your shopping list. You're about to change your life.

If you're still in the mood to keep reading, I found this forum convo very helpful.

Is Having Blood Sugar in the 400's Dangerous?

This one is more techy.

Lupus and Diabetes
"People with lupus or diabetes – or both – can improve overall health and relieve a number of symptoms just by making healthy choices. A plant-based diet with lots of vegetables, legumes, and plant oils is critical. Adequate rest is also important. And exercise is crucial, both to control weight and insulin levels and to increase energy and improve mood. A healthy diet and a commitment to a treatment plan will strengthen the body and help the immune system return to a state of balance – and will make the treatment plan itself more effective."

One more thing- I can't repeat enough what a difference getting more protein in my diet has done for my overall physical and emotional health. Your tissues cannot heal properly without adequate protein and you will always feel 'off'. Pills can't fix that.

Get that spiral!!! Good luck.

haters gonna hate

Let's be honest. Holidays do a pretty good job bringing out about as much stress as anything on the planet. For some reason the pressure gets cranked up and everything comes under not just a spotlight, but a microscope. It's the season for charity, for giving, for selflessness, and for media driven haters. And I think we're all getting tired of it. I've run into several posts and comments this last week pointing out the redundancy and stupidity of grouping up a hatefest on haters. I mean, it's ok to vehemently hate the little stuff, right? It's ok to group shred a person for having a bad day and saying something stupid. But it's not ok if someone blows up and starts shooting little kids. I'm not understanding where the difference lies. When is it ok to HATE in the first place? Where do we draw the line at stomping on people's heads? I think what's bothering me is that the haters hating the other haters think they're the good people and it's their duty to hate the bad haters as long as we're on the good haters side.

One thing that's kind of bothering me is famous people doing this. They have huge loads of followers favoriting and retweeting everything they do, moving along like a synchronized school of fish. If a famous person designates someone to group hate on, the whole school of fish starts chiming in, even if it was just one comment from a hit and run person who normally doesn't follow the famous person to begin with. It's important to establish that we HATE ANYONE who dares to speak their mind about something they don't like, regardless of where that person is coming from. It's important to GROUP HATE and make sure we're all on the same side PROTECTING OUR FAMOUS PERSON. *wow*

Grow up. I just want to say that to everyone in the media who has a bad day getting a little offended by a tweeter or commenter saying something not as nice as you'd like. So it got to you, so you blew up. YOU are affecting a LOT of people by responding to it. YOU are TEACHING people to GROUP HATE. Even if you do it in the name of all that is good and holy and justify all your reasons for crashing down to their level reacting to it, it is still HATE. I'm really tired of seeing that. We want our superheroes, but we can't be superheroes ourselves on the internet. We can't just walk by a few pissy words without having to make a huge deal out of them.

I see famous people talk about having depression, and I see them make big deals out of making sure to post that you should help family members or friends get the proper help they need for depression every time suicide or grisly crimes or whatever pops up on the news, but I don't see them actually say anything substantial about how they themselves are surviving real depression DAILY, or how they are themselves helping real family members and friends cope DAILY. They don't talk about how emotionally exhausting it is, or how we keep ourselves going, or the little things that help us keep it all together when our worlds fall apart. In fact, those very people with the big schools of fish following them don't seem to notice how much they rely themselves on those schools of fish to keep them going. Must be nice. Where can *I* get a school of fish to follow my every move and support me through every minor crisis and shred any haters that cross my path? I know, you earned that because you did something that makes money. I could play the same game, actually the ultimate in gaming, right? Become successful, gain a following, build your private army, and Be Someone in blogs and on twitter. I'm all for that, I just think the group hate thing sux.

Haters gonna hate. If you can't deal with one or two little haters popping up in your following of, what, 20,000 or more (millions?), DANG. You've got a problem, famous person. Because the rest of us deal head on with haters while the lurkers cower and hope we are the superheroes who can walk on by and not be phased. I have been learning how to be a superhero. It's not pretty or easy. It's a really lonely way to live. You don't get paid, and most of the time no one publicly cheers you on. You famous people can feed your schools of fish on your crumbs while they group hate for you for free (internet body guards, what next?), but that makes me sick, and I think I'm so unimpressed that I'm going to just keep doing what I'm doing and stop using you guys as role models. I watch other people suck up over that kind of stuff and I just reel away wondering when grown people stopped noticing their playground mentality is what isolates the very people they CLAIM they want to get help for. Is it any wonder we see the kind of stuff on the news that horrifies us.

Piranhas. Barracudas. Pretty schools of fish.