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Saturday, December 20, 2014

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.

Thursday, November 20, 2014

Why isn't my weight loss program working?

This will take a month to read, so grab a sandwich. If you are needing moral support with a weight loss plan because it sucks plugging in numbers, here you go. I'm your tour guide through what went wrong (for me, that is).

Last month I started a loseit account. I have spent the last 41 days figuring out how to make it work (better phrase- how to correctly use it) and I think I have finally got the numbers set right. One good thing came out of it even though my net loss this morning is only 1 pound- I haven't gained any new weight, yay!

I originally lost 50 pounds in 2011 very simply by stopping at 1500 calories every day and avoiding everything bread, rice, and potatoes, like my doctor told me. Back then I had lots of incentive- I was so disabled I could barely walk across my own house. let alone get  out and do anything on my own. You might get the idea from this that I was absolutely huge, but not so, just simply so ketoned up from diabetes that my fibromyalgia locked up like cement and pain and meds finished me off. All it took was cutting the carbs way down and stopping at 1500 calories to change my life. People hate hearing "changed my life" from enthusiastic newly emerged butterflies, but when it's your turn to hover close to death, let me know how it goes with hating everything instead of fighting to survive.

My problem with a weight loss plan is numbers, forms, and way too much information. You guys have heard me mention my glitchy brain, well, it was so bad last week that I had to call an 800 number for help filling out simple personal info for a billing problem. I explained that part of my disability is cognitive and that I am easily confused with forms and manage to answer the simplest questions wrong. I know that's hard to believe given how I never stop typing, but it's true. I've even written about how the publishing forms for the book I still haven't submitted yet freak me out to no end, which is hellishly ironic.

Ketones have a way of stacking up so that your body can't take out the trash very well, as it were. Diabetics who don't or can't control well always have ketones in the way of everything they do. One of my doctors made a note about my ketone level in 2008 but waved off a diabetes diagnosis. Another doctor in 2011 turned my life around with a diagnosis, but by then my brain fog was so bad that I was a goofball. Even though my blood sugars were never officially caught above 200, I'd already had the breathlessness and fruity breath for a couple of years, to the point of needing a daily inhaler just to breathe, so I personally don't think a low level ketone problem isn't diagnostically assumable to not affect whole body function. The doctor who waved me off just kept throwing prescriptions at me while I felt mired and sinking in tar.

Brains function on glucose. How does the brain use food as energy? Counterintuitively, this doesn't mean that the more sugary soda pop you drink, the smarter you get, as we read in that article.

The brain is an energy-hungry organ. Despite comprising only 2 percent of the body’s weight, the brain gobbles up more than 20 percent of daily energy intake. Because the brain demands such high amounts of energy, the foods we consume greatly affect brain function, including everything from learning and memory to emotions.

Just like other cells in the body, brain cells use a form of sugar called glucose to fuel cellular activities. This energy comes from the foods we consume daily and is regularly delivered to brain cells (called neurons) through the blood. Studies suggest the quality of the foods consumed over the lifetime affects the structure and function of the brain. For instance, the consumption of omega-3 fatty acids found in fish provides structural material to maintain neurons. Studies also suggest omega-3 fatty acids are essential for the transmission of information between brain cells. In contrast, foods that are rich in sugars and saturated fats have been found to promote oxidative stress, which leads to damage of cell membranes.


The food you eat also affects molecules in the brain that support cognition. Some foods, such as those with turmeric, support cognition by helping to maintain molecular events related to energy metabolism. Recent studies suggest lifestyle choices that affect the metabolism of nerve cells, such as diet and exercise, may in some cases provide a noninvasive and effective strategy to counteract neurological and cognitive disorders.


Brain fog is a real thing, and although not medically diagnostic, has crept into a number of medical observation articles related to chronic illnesses. A diabetes diagnosis carries more weight than chronic illness. Is Diabetes Treated as an Acute or Chronic Illness in Community Family Practice? Some of you with diabetes might not be aware that a rapid very high spike or very low drop in your blood sugar is life threatening. It is sensible to assume that diabetics live with some pretty hefty brain fog and have difficulty managing their lives. I know I sure did. Even when we have a healthy day or week  and are able to fool the world and pass for normal, we can experience 'brain fail' in the middle of being our brilliant selves, suddenly our thoughts wink out and we stumble over what we were saying, we must follow a list, and once in awhile wonder how in the world we didn't just have a nasty traffic accident. Diabetes is a big deal on a daily basis because a crippled metabolic process logically cripples a brain completely reliant on smooth metabolic processing.

That's a lot of stuff I've just written to explain this- Plugging numbers into weight loss plans on the internet is hard. Looking up every jot and tittle for calories and carbs is hard. Forcing eyes to work that much harder, doing simple math, keeping track of what we were thinking and doing while we work on the end goal of plugging in a variable IS HARD.

I aced my way through a college algebra class on my first try. If I say using an online weight loss program is hard because of chronic illness brain fog, it's hard.

The people who need help the most must work the hardest to achieve what other people take for granted. It's not fair, no. It sucks, yes. Is it worth it? I can say honestly that any blinking in the light is definitely worth it.

Here's the thing. My first mistake was feeling frustrated with the built in calorie counter and guesstimating my caloric intake because it was easier and faster on my eyes and my brain. My second mistake was feeling frustrated with the built in exercise calculator and, again, guesstimating. My third mistake was assuming I was getting enough nutrients every day and I doubled my original workout schedule. I had originally been walking 30 minutes every other day with occasional stretchy band and other core strength maintenance. When I joined loseit, I started exercising every day.

I lost 2 pounds. Then I went up one pound. Then down one pound. Then back up one pound. Then down 2 pounds, Then up one pound.... I basically got caught in a loop, and nothing I did changed it. After 4 weeks of laughing about being caught in the same 3 pound revolving door I got a little angry and started snooping around the groups yapping and even contacted a moderator. He told me to adjust my calorie calculator and linked me to a BMR calculator. I adjusted. No change. By the end of 4 weeks everything stopped and I laid in bed for 3 days.

I was lucky. As I laid there I realized 1- this didn't feel like the old depression from several years ago where all function stopped and I took to my bed for weeks, 2- my brain is working even better than ever, what is going on???, and 3- it's making me cranky to lay here and I don't seem to be sick, so something must actually be going on. I have many years of experience with chronic illness, and this didn't feel like that. What did it feel like? After some thought I decided it felt like I had very simply just run out of energy.

My beginning plan with loseit was for around 1200 calories. That is what their calculator gave me when I plugged in my height and weight and how quickly I wanted to lose X amount of pounds. I was obviously way under the 1500 calorie plan my doctor gave me in 2011, and this time I was exercising. A lot. Way more than I used to, which I find thrilling after so many years of being a super wimp. Anyway, obviously something was way off if I wasn't losing weight.

I found a better BMR calculator. I noticed that it linked to a really good BMI calculator. And that led to this-

Once you know the number of calories needed to maintain your weight, you can easily calculate the number of calories you need to eat in order to gain or lose weight:
Calorie intake to gain weight
Calorie intake to lose weight

AND the number of calories we need to eat doing all that exercise without killing ourselves...

Do all of those in the same order that I linked them. After I discovered I needed more than 1200 calories just to sit around and watch TV all day, I also ran into articles that talked about how when we don't eat enough, our bodies get really good at hanging onto every shred of stuff it gets, so I'm pretty amazed that 3 1/2 weeks of double my workout on way too few calories didn't budge my weight down more than 3 pounds the whole time. That means my body is incredibly efficient. Our bodies are wondrous things, even when we're chronic.

So I went back to loseit and adjusted my plan again, and I noticed this time there there was a tiny embedded link (squint squint) that lets you set your own daily calorie budget after you've set your time schedule, assuming you know your BMR requirements. The inbuilt calculator then automatically adjusts your daily log and from there...

Ug. From there, the only way the calculator can work correctly is if I stop guesstimating. Especially when I find atrocious mistakes in their calorie catalog. Don't know who input this particular data, but evaporated milk does NOT have 150 calories in 2 T, good grief. Time to pull my brain out of my pocket and read labels and create my own calorie catalog, which loseit allows, thank goodness. That actually makes it easier later because it keeps track of the foods you like to eat, and if you eat the same things over and over, just point and click once you've got the numbers set correctly.

But that wasn't enough. Loseit also calculates nutrients, and you can pick and choose which ones you'd like to keep track of. Like protein. It occurred to me that 3+ weeks of heavier exercise on fewer calories probably put me in a severe protein deficit, and I was right. I found an awesome protein calculator and found out I needed way more than I thought, so I started changing some of the things I was eating. Reaching a protein goal without going over a calorie goal is harder than you think, and I learned real fast that even as an aware carb counting diabetic, I was still eating way too many carbs and sacrificing other nutrients at the calorie line. My old habits had snuck back in. Carb calories are harder to lose than any other kind, which is why the South Beach diet is such a success.

So on top of counting my own carbs and calories, now I had to start counting my protein. It's really hard to create your own calorie catalog when the weight loss plan's built in calorie catalog isn't very helpful, but I found this super awesome nutrient catalog site that makes it way easier.

I'm only a couple of days into all this new more correct stuff, but I've already got my energy back. I've been eating my calorie budget and my body is so relieved to be getting more food, especially now that I've added more protein. All systems are going back to normal, my nerves are calming down, and I feel more capable of handling the holidays coming up.

One question- if I was so worn out from a calorie deficit, why was my brain working well enough to puzzle this stuff out when I hit my lowest point? I was very surprised by this. I'm going to guess it's because I had managed to get my ketones down lower than I've had them in a very long time between restricting calories and extra exercise, which made what glucose I did eat go straight to my brain. Ok, truth- I don't know. I've lived with brain fog so long, I'm just really surprised I was able to plug my brain in and think my way through this jam. And now I'm sharing it because I know some of you need a more step by step moral support to stay plugged into a program that isn't making any sense, right?

It's possible to do a weight loss program all wrong and actually hurt yourself, like I was doing. I was getting warning signs galore, like anxiety attacks out of nowhere, blood pressure surges, skippy heartbeats, and weird charley horses moving around all over my body. If I'd gone to a doctor for that stuff I'd have been handed more pills, which would've only masked them without solving anything. I'm lucky my body finally just said stop and I laid in bed for 3 days resting. If your body is STOPPING, that's a pretty big sign that you need to stop doing something you're doing or that something else is going on that needs attention, like illness.

I know people say drinking more water helps prevent charley horses or working out more keeps you from getting sick so much, but these things don't help if you're not getting enough protein to stay healthy or enough calories to even be a couch potato. If you are diabetic and feeling frustrated with an online weight loss program, take a break and spend some time digging a little deeper. If 'normal' people are also frustrated and inputting data wrong, you know it's going to be even harder for us. It's ok. Main thing is that we're all still learning and you're not alone feeling frustrated!



Saturday, October 18, 2014

ebola? panic? human cattle panicking and not learning a thing?

Cool stuff from the last couple of days.

This is cool because I wrote this. Yes, I'm a Burt Gummer fan. Click the pic for more info.


This is cool because I've talked about getting a scalp tattoo if I ever lose my hair. Click the pic to see more info.


This is cool because it's a real rifle and because of the links I found directly afterward about Ebola preparedness in the United States. Click these pix for more info.



The rest of this is me being a cool drill sergeant all over your butts.

See, the first rule of any epidemic is STAY HOME. <-- That preparedness plan is from 2006. It's still viable. If you're really that worried about ebola, don't wait till you think you've been exposed to suddenly bolt and take to the hills, or go on a cruise. Any spoonie who is already a carrier for something like CMV will tell you this is not enough.



Despite having pandemic preparedness guidelines in place since at least 2007, people are still unaware of how disease actually spreads (you wouldn't believe how many people still don't wash their hands) and that running around looking for food and medicine during a fever is the fastest way to infect your fellow man.


Did you know that HIV, MRSA, VRSA, and C diff are infecting people across the U.S. every day? These are just as scary as ebola because DEATH.


Let's don't use this as an excuse to spread disease, please.





I could go on. This is how spoonies see the world. I have lived with this kind of fear for 20 years because people around me think coughing their lungs out and barfing in public is no big deal. What doesn't kill you makes you stronger, right? Or maybe it kills the person you were standing next to in a line at a theme park.

STAY HOME IF YOU ARE SICK. And please, for the love of anything you hold dear, stop asking the general public to look at your sore that won't heal or touch other people's owies without washing your hands first. The rest of the world thanks you.

Thursday, October 16, 2014

I don't know if I'm being brave or stupid

Anxiety attacks are no joke. My blood pressure hit 171/92 at 7:20 this morning because of stuff I was writing elsewhere that kept hitting and pinging some of my worst triggers and took 20 minutes to come back down below the 140/90 line that my doctor freaks out about. I was kinda proud of that, usually takes an hour or two, in the past, even longer, and it's gone way higher than that, too. But my stomach and chest have still been tight all day and I'm doing maintenance workouts in small batches that won't trigger the fibro after all that hooplah.

Some people say "Get a grip." I have to very seriously UN-grip my whole body. It's been an all-day job staying on top of this while I keep working on that other writing, also in small batches. So why am I even doing it???

Because I can. Because I've come this far. Because I want to.

They say face your fears. They never say what to do after that. My biggest fear is my own body over reacting to everything. To me, anxiety attacks are like facing down a dog that is about to leap and bite or getting on a big horse that wants to bolt. (I've actually done both in my life several times, and honestly, I'll take the dog and horse any day over anxiety attacks.)

One of the jokes around my house is that if the world falls apart from some doomsday scenario, I'll be among the first wave to die, if for no other reason than because I won't be able to get my thyroid pills. Ever think about that? Five years ago I was on handfuls of medications, and I very clearly wouldn't have lasted through a major crisis like a nationwide economic crash.

I'm changing all that. I used to be real tough. An accident and a couple of illnesses changed all that for a long time, but I'm changing it back. Because I want to. Some day my anxiety attacks will last only a few minutes while I face even harder triggers, if they don't give me a heart attack first. I'm working on lowering that risk, not because I'm scared, but because I want to.

I used to be able to run. It's been a long time since my sister and brother and I pushed 200 head of nearly wild cattle between woods and hills through 2 miles of pasture to a chute, but we never stopped until it was done, and then the real work began.


I want to be able to run like that again.



Sunday, October 12, 2014

common misconceptions about cross contaminated food allergens


I keep running into these problems, so I thought maybe I should write them down. This is why I no longer 'eat out' or pick up food from a deli or eat anyone else's cooking, no matter how stringent they think they are controlling for my specific food allergens. These are real examples I have experienced with certified professionals, trained food handlers, family members, and the general public. All of the professionals and workers in this list were informed of specific food allergies ahead of time.

1. A top chef in a Japanese steak house assured me he didn't cook with lemon, and indeed cooked my entire meal in front of me with no lemon. I was very glad I had enough benadryl on me to control the reaction I started having with the first bite and on through the meal to the point where, when our meals were all done being cooked, he sliced a lemon in half and cleaned the grill with it. Lemon seared onto a hot grill puts lemon into every bite of food that comes off that grill. That reaction went on for several hours on 150 mg of benadryl, and I was later watched in a clinic.

2. A massage therapist with a doctorate in physical therapy believed it was enough to use hand sanitizer after eating peanut butter before touching my bare skin with her bare hands, even after I had alerted her to intense skin reactions to even the most minute amount of anything peanut. Hand sanitizer doesn't 'kill' peanut allergen. A food allergen is not a germ. Smearing alcohol on anything oily doesn't magically make that oily substance inert. This came up three times between us in three different sessions. I finally had a genuine skin reaction one day that scared several therapists (my upper back and neck turned a brilliant flaming red that looked like a very bad sunburn) and I had to take benadryl before I left the building. It never happened again after that, and she stopped arguing with me about it. I personally wonder if she experimented on me because she thought I was making too big a deal about having such a dramatic food reaction.

3. A pizza place locally famous for making pizzas with various nut toppings (which I was not aware of until I walked in) offered to make me a nut-free pizza on a cleaned off counter, but the cook didn't switch her gloves out. Touching a food with gloves and touching another food with the same gloves is cross contamination, no matter how stringently you have purged and cleaned your work area and use all different dishes for the food. Thankfully I actually saw this happen since the cook's work space was open to the public. It's just best never to go inside an establishment that serves nuts and have surfaces and people all around you coated with what could be toxic to one's self, if you have a nut allergy.

4. I ordered water without lemon in a very nice restaurant assuming that would be safe. As the waitress started across the room toward our table, she suddenly went 'oh' and stopped, set the tray down, and delicately fished a lemon slice out with her fingers, then served that glass to me when she reached our table, thinking I hadn't seen her. Removing a food from a dish doesn't remove the allergen and the risk for reaction. While the rest of you go ew, her fingers, I'm going holy cow I could have wound up in a hospital if I hadn't seen that. I have never trusted anyone to serve me water since then. Same goes for coffee, after watching a woman slice lemons and then grab a clean coffee cup by the rim for me with one of her fingers inside without washing her hands first. Again, if I hadn't seen that happen...

5. I ordered water in a sandwich shop and was handed a cup to take to a soda fountain, which shared a spigot for iced tea with lemon with plain water when switched. When I went back to ask for tap water because of a lemon allergy, the server couldn't understand what the problem was. Running water doesn't remove a food allergen all by itself. Not having any idea how long that spigot had lemon building up on it without being cleaned isn't even relevant. My water being exposed to any lemon at all was unacceptable. That also goes for clear soda spigots that share to plain water, since most clear sodas are a 'lemon-lime' flavor.

6. I ordered breakfast out thinking what problem could I possibly run into just ordering pancakes, eggs, and bacon. As I was shoveling it down (I was starving) and realizing it was happening again, I happened to glance up through a doorway and saw a cook wipe a pan out on his apron. Having cooked professionally myself, I suddenly thought oh yeah, Hollandaise sauce, which has lemon in it. If the pan my food had been cooked in had been used multiple times through the morning and wiped on a common apron (I swear I was in a nice restaurant, not a 'greasy spoon'), then it was likely my food was cross contaminated. Wiping a pan out doesn't remove a food allergen, and heat doesn't 'kill' an allergen. Even though my waitress had strict instructions to keep all citrus away from my dishes and food, a cook in a hurry had me racing to the ER on a Sunday morning because all the walk in clinics and urgent cares were closed.

Other reactions in public places have happened, but those are the biggies where you'd assume that alerting your server and cook would make your food safe. Alas, I have to be much more vigilant than that, as in this next example.

One of my worst hand reactions (puffing, redness, really bad itching) was after I'd been pushing a cart in a store. Either the wipes other people had used to 'clean' the handle were spiked with refreshing lemon, or someone had been eating some of the free food samples while they shopped that I avoid like the plague. I had to go wash my hands vigorously with soap a couple of times and take benadryl. While the rest of you freak out about germs on your cart, I freak out about you all touching everything and me dying from it. By the way, wipes don't 'clean' cart handles. Hospitals use disinfectant wipes that are so strong you have to wear gloves to handle them, so the puny wipes offered by stores for cart handles are only there for your peace of mind, and they certainly don't magically remove peanut butter... It doesn't mean you don't have to go wash your hands after touching things other people touch.

Since I brought up washing my hands, I'd like to ask the public to please stop stocking citrus scented soap in public restrooms. I've learned that not using soap is safer for me in public, which goes against all good advice during flu season. I've thought about carrying my own soap, but I seem to be just as well off never putting my hands near my face while I'm not home, since the point of entry for germs is eyes, ears, nose, and especially mouth. Then when I get home I wash my hands and change my clothes.

Back to food. I was once told by a family member that a special recipe had been prepared especially for me at a holiday gathering. As awkward as it was, I asked to see all the ingredients so I could check labels. Something as seemingly innocuous as ketchup with 'natural flavors' had me apologizing for not eating what was prepared especially for me (many acidic foods are flavor boosted with lemon, which doesn't have to be listed as an ingredient by law), and ever since I have instructed everyone around me that it's ok, don't worry about me, eat what you like to eat. I will take care of me, and I will be careful around you and your food, or won't come over if it's a really big deal (peanut butter pie, lol), because I think other people should enjoy their food. I have learned to eat before I visit with other people and I'm working on being a good conversationalist to help distract from being awkward because it's weird when other people feel guilty when I'm not eating, and it makes me uncomfortable that they're uncomfortable.

I no longer order coffee out, or any other drink. I bring only sealed bottled drinks everywhere I go, even if the place I'm in sells them, so other people won't have to handle my bottle. I pack my meal or snack in a Spiderman lunch box and take it into restaurants with me. I wear a medical alert bracelet in case there are questions, and so far no one has had any problems with me doing this. I've never been kept out of or told to leave an establishment because I brought my own food and drinks. I remain aware at all times that allergens surround me, could be on any surface or object, and will probably be on someone's hand when I shake it. I still hug people (I've had reactions doing that) and shake hands, but I'm very careful to wash my hands frequently and never touch the food I bring with me with my bare hands while I'm out in public.

I carry medications on me everywhere I go in case I have a reaction. It's not anyone else's fault I'm difficult. However, sooner or later, we all know someone who knew someone who had a near fatal reaction in a public place, and some of us wind up with kids who have food allergies. It's important that we all become more aware of why protocol is protocol (actual hand washing vs sanitizer, food handling, etc) and that everything we do affects the people around us either positively or negatively.

Something to think about- we know how we feel about a drunk driver killing a child, right? How about a negligent food preparer/server who inadvertently kills a child with a severe food allergy because they were in a hurry and/or dishonest?

For people who still don't get how heart rending it is to never know if your child will come home from school each day, and a question I feel coming on of whether food allergies are the new 'racism' (very first comment)- What it feels like to be the food allergy mom (click) by Katherine Martin. This is also basically how I feel about being the only person on board a plane who can single handedly shut down the snack venue and has to hear angry people demand to know where the peanuts are and why they can't have any. I can't tell you how terrifying it is to feel trapped in a small place jammed full of people who have been snacking on nuts and no chance of escape for several hours and I don't dare touch anything.

I'm the sort of person who is able to stand up and confront in public, not because I'm brave, but because I'm not afraid of looking stupid. There are a lot of people in this world who will never tell you they are having pain or panic or some kind of reaction going on because they are timid and afraid. It especially gets dumb when the public misunderstands what the problem actually is and nearly kills someone trying to 'save' them because they don't have a lick of sense when the person in crisis isn't able to speak well for themselves. It's human nature to be judgmental, and people with challenges live in continual judgement everywhere they go. Your kindness and consideration could literally be life saving. It feels really good to know your presence might have actually saved someone's life. Imagine knowing you saved someone else's child and kept a very bad day from happening for the people who love that child.

That's what food allergies are all about, Charlie Brown.

:edit: 10-13-14 This link was given to me privately.
Vaccines and the Peanut Allergy Epidemic
While I disagree over the origin of autism (I was unvaccinated for the most part as a child and come from a Mennonite family history, which indicates genetics, also based on other family member personality types and behaviors), I am shocked at the prevalence of peanut ingredient as a main vaccine excipient for so many years, and that this was known and unpublished to the public. I have not researched the truth of this article. In personal retrospect, to be fair, my peanut allergy did not begin until my 40's, and by then I'd had a number of shots throughout my adulthood. I also have multiple food allergies (autoimmune reaction disorder), all recent in the last 5 or so years, so I can't blame my own stuff on a simple swipe at demonic vaccinations. Vaccinations do still save lives (I grew up with disabled polio victims and people going deaf and developing heart complications and even retardation from hard measles, among other diseases), and prevent quarantinable epidemics (I remember those, too), so I'm still on the fence with vaccines.

Friday, October 10, 2014

that rug really tied the room together

Some mornings you feel like The Dude just looking for his rug.


All I wanna do is plug in 'coffee, 2 creams, 1/2 sugar' into LoseIt and right away I'm stymied by technology that won't allow for variation in a long list of generic specifics. I finally stumble onto a customize window but now I have to figure my own calories. The whole point to getting on this site is so I don't have to count the calories myself because I obviously have a hole in my head and can't count right.


I keep cycling through this existential 'why am I even on this page' crap, and I keep remembering it's because I thought I kept it at or under 1500 calories yesterday and somehow still put on a pound while I slept. Which could partly be due to the pred rebound OR, as my faulty memory strangely illuminated without any problem whatsoever at 2 a.m. in the dark, I forgot to write down the bowl of cereal that I ate and possibly even the cheese. Which would bump me over 1700 calories, and no wonder the scale went backward. Dang it.

The nutritionist I saw last month suggested LoseIt.com, so this morning bright and early I'm wrestling with the controls and feeling cranky. I have to do math. At 6 a.m. With a glitchy brain. Math used to be such a breeze for me. Bleah. But then I remember I really wanna lose the rest of this weight (I think I've remembered that 3 times already) and I get back to it.

Ok, so coffee the way I make it is 130 calories a cup. Since this chart says I can have only 1183 calories a day on the plan I chose (I'm a free plan person), I can tell already I'll be cutting out the second cup of coffee tomorrow.


I'd keep whining, but I'm recalling that I used to have a whole lot more to whine about, so I'm slapping myself and yelling GET A GRIP YOU BIG BABY and slamming myself against the wall. Maybe that's Walter. If you haven't seen the movie, spoiler alert, he's a big softie with PTSD. I like Walter.


See, prednisone really screws up the way your body metabolizes stuff, even after it's over and done. I've run into this in so many searches. I find a rare guy here or there that remains a stick without trying and says the rest of us are being silly, but it's a real thing, lotta fluid gets moved out and then more packs on, fat storage winds up going to all the wrong places (this is medically documented), and if you're diabetic and hypothyroid, oh well sux for you, just shudup and eat a cookie and buy a moomoo.


I've discovered that a person really can make it through steroids without any weight gain by strictly monitoring carbs while the pred is spiking blood glucose, but once the pred is over, your body will do everything in its power to keep that new artificial glucose default going, and the carb cravings get pretty bizarre even a couple of weeks after the prednisone is over. This is something you don't find medical professionals writing about because they stupidly don't know, most of them not having gone through long rounds of steroids or maybe not as intensely observant of themselves on it, like I am. My body got real used to my blood sugar being 180 through the day, even when I had no carbs at all, thanks to the prednisone, so now that I'm off, my brain/body feedback loop is screaming for restitution and trying its hardest to fight recovery in its own very faulty way. If I weren't diabetic, this probably wouldn't be a problem.

So I have to retrain all over again. I have to give my body time to readjust back to having blood sugar levels below 120 all day, preferably in the 90's, and exercise regularly to let my body know I want to USE the food I eat, NOT store it. It's a contest of wills, my conscious self over my unconscious automatic faulty programming. Who will last the longest?

This is my rug. Gotta go walk that second cup of coffee off now.


:edit: I've made my LoseIt profile public, in case anyone wants to join me or check on how badly I'm falling on my face, lol. You may need a community account before you can see it, sorry.


Wednesday, October 8, 2014

for whoever can't sleep at 2 a.m. because their blood pressure is freaking them out

I really hadn't given a lot of thought until this last week to how experienced I am with monitoring blood pressure compared to a medical professional on the other end of a telephone call, like a nurse or a pharmacist. They are good people and undoubtedly well trained, and particularly wonderful to talk to when we are scared, but this week I was privy to a family member adapting to a new blood pressure med and grew very concerned about the 3 big M's going out of control- misinformation, misunderstanding, and medical mistakes.

Medical pix give me anxiety, so I'm going to put funny pix in this post. They all click to original source.


I'm sure this is a common scenario- a newbie takes a blood pressure reading, experiences a little panic about the numbers, calls a pharmacist or nurse and expresses their fear and concern, and that person almost automatically responds with a consequential action, in this case, changing the dose of the blood pressure med. Over the phone. Without a doctor being aware of what is happening.

Thanks to having so much experience with me in the house, Scott was able to help our loved one with repositioning the arm cuff which then led to much more pleasant numbers, and no need at all to change the dose and/or drive in to urgent care or call an ambulance.  Having been through two decades of my own arm and wrist cuffs and also being trained to take a blood pressure in nursing school, one of the first questions I asked when I got the call was- did you get the cuff positioned right, because those numbers don't sound right at all. I'd never heard of a systolic/diastolic combo as weird as that one, which usually means the cuff isn't reading the pressure properly. I couldn't believe that neither a pharmacist nor a nurse had even thought to question that before dispensing medical advice.


Even though taking a blood pressure reading is very easy, especially with today's techy gadgets, it's also very easy to mistakenly get a bad reading if you haven't been trained or don't take the time to read the instructions. It also helps to practice every once in awhile, and then write down what you get at what time throughout the day or night. Over the course of several days you'll find that 1- your blood pressure naturally goes up with movement and/or worry, 2- your blood pressure normally goes up and down all day and even all night, 3- you can make your blood pressure numbers better by pooping first or staying hydrated or simply just not caring what the numbers will be. It's very nerve wracking to shoot for a target number and then try to hit it on the nose, and even more nerve wracking when a new med makes you feel funny so your body responds against it and then you think the pill is killing you because your blood pressure went up instead of down.

My doctor is happy when he sees that my blood pressure isn't over 140/90. I have all kinds of tension driving into town and then sitting in his office, and my blood pressure pill can't force me to hold at 120/80 for beans. But after I get home and piddle around, I'm back down to 115/75 or something like that. It's hard not to believe your blood pressure pill will stop your heart from beating when dose time comes around and your pressure is already really good, and then you can go through another panic reaction if you go ahead and take it and suddenly your BP surges up to something like 180/110. Many people don't realize your body can override your BP med and that changing a dose based on panic causes even more problems down the road.


You don't know all this if you don't take your blood pressure. Ignorance is bliss. However, if you have diabetes or heart disease, you need to be checking it at least once a week to make sure you're on track with your meds in between doctor visits. The thing is, most people don't catch their blood pressure actually behaving well, even if it might be. That's why it's good to take a few readings at different times through the day for about a week when you first start taking your own readings. Find out what your normal really is. Your normal is an average of ups and downs, and your target for normal is around 120/80.

I have learned over the last 20 years that I can still function at 90/60 if a time release calcium channel blocker gets metabolized too quickly (even aced a college exam in that state), but you definitely don't get into a car and drive until you get over feeling like molasses dripping slowly down the furniture. My doctor pulled me off the time release after I got that reading and called him, and eventually switched me to a beta blocker. I've also learned that just switching to different kinds of blood pressure meds don't automatically solve problems IF your body doesn't or can't respond correctly or over responds while it's still fighting the sudden withdrawal of the one before, so jumping from a beta blocker or calcium channel blocker to an alpha blocker might bring one person relief and another person more problems. I went through a pretty rough month one year trying a different kind every week and finally on the fifth week came back to a beta blocker, which isn't ideal for me because I have multiple allergy issues and beta blockers exacerbate histamine levels and aren't necessarily top choice for diabetics, BUT I'm used to it, I tolerate it well, and with as much experience as I have with it, I am able to adjust my dose while I monitor over several days if there are any changes, like when I'm on prednisone (big blood pressure drop) or experiencing any kind of inflammation or autoimmune flare up (blood pressure goes up and stays up when I'm sick).

Types of Blood Pressure Medications - It really does help to know more about the med you're on.

Choosing Blood Pressure Medications - Having more knowledge also helps us relax, and relaxing gives us more accurate pressure readings.

High blood pressure is a scary thing over time, but it's not something that's going to outright kill you right now today just because you took a blood pressure reading and scared yourself silly and it keeps going up every time you take another reading. Walk away from the cuff. Don't start popping blood pressure pills trying to force it down, and I'll tell you why with this example about the antihistamines Benadryl and Zyrtec- They're basically the same thing, only Benadryl works immediately to bring histamine reactions back down in the body during a crisis, while Zyrtec works more over time to help keep them down in the first place. Taking Benadryl doesn't prevent new reactions from happening because it mostly works the first hour or two you take it, but Zyrtec does if you keep it in your system by taking one every day, and the antihistamine effects are continual. Blood pressure meds are kind of like this. Some are more immediate, but most work best over time. When you start a new BP med or change your dose, it can take a few days or maybe even a couple of weeks before you see a steady lower reading, with others you might have a more immediate response. The last thing you want to do without supervision is pile on more medication to do something immediate that might actually have adverse longer term affects.


Any kind of pill that causes change in the body can feel disturbing. Your body is used to a certain way of doing things, it's got its own default set, and a pill is forcing it to change how it does things and set a new default. The first few days you're on a new med or dose change you might feel light headed or sluggish, and it will get even more confusing real quick if you start taking readings and panicking, because then your body will think you believe the pill is poison and it will fight against it trying to 'save your life', even though that pill might be what is saving your life in the long run.

I know all this because I have lived through some monumental panic attacks that sent my BP soaring to 240/130. I'm high risk for blood clots and strokes (family history), so you can bet that scares the crap outa me, but I'm still here, not one sign of even a mini-clot yet (yes, I've had brain scans), and I'm getting tired of panicking over it. Just a note here- I've only twice ever been given something to bring my blood pressure down and I hated it. I've had nitroglycerin spray under my tongue in an ambulance when it wasn't even that high, and another time I had it intravenously, probably more to force me to calm my nerves than anything so they could send me home. I wound up with throbbing headaches both times.


If you think you might need emergency help because you see a high reading, do this checklist- Am I breathing ok? Is my chest hurting? Am I dizzy? Am I moving around and functioning and thinking normally? If high blood pressure is the only symptom you are having and it's happening while you are in an alarmed state, then it's most likely temporary. I'm not advising you to sit at home with a pile of nerves and screaming high blood pressure, but I am saying that it will most likely come down after the adrenaline (fight or flight hormone) is filtered back out of your bloodstream and tissues, and even in an ER it has taken up to 6 hours for mine to come down. They mostly just watch it. If there are no other emergency symptoms, they generally don't treat, because if they treat and you really didn't need it because you're already on a blood pressure pill, your blood pressure will really drop when it does come down, which will scare you all over again. It's a fun little roller coaster that winds up getting really expensive really fast. So if you aren't having any other symptoms, try distracting yourself with ice packs and TV or a book (never do heavy exercise with your blood pressure already up real high) or maybe talk to someone on the phone or something, and then later you might notice the readings coming down.

Having said that, if you've got a history of blood clots, heart attack, or strokes, don't wait 6 hours if your blood pressure is staying high because I said to, because I certainly don't. I expect mine to come back down in about an hour or two, and it's always been back down in six without much intervention.

Also, if you have a jumpy spouse or whoever in the house that doesn't know how to help you stay calm and relaxed and actually kind of makes it worse with their attitude or their own panic or crabby reaction, it's your call whether you're going to sit there and let that dictate whether you go into some kind of overload and have a heart attack or something, which is one reason I have so much experience going on to the ER. People who don't have their own experience with how scary it is feeling their heart pound or simply just fearing death in general can be counterintuitive to blood pressure coming back down if they can't help being snippy or snarky or just plain mean, even if they don't mean it. When their turn comes, they'll be a big baby, too, but in the meantime, anger and hurt feelings only make high blood pressure worse, and feeling sorry for yourself in that kind of situation and not going in just to make someone pay if something really does turn out to be wrong is a stupid game to play. I've watched people play that game. No one wins.


Ok, back to basics. If you take readings at home, it's important to practice on other people besides yourself, it's important that other people learn how to take your blood pressure for you if you need them to (kids love this), and it's important that you NOT take every single reading so seriously that you wind up sending yourself to the hospital. It's ok to see weird numbers. The first thing you do is check whether the cuff is placed correctly, whether it needs a battery change, whether you might need a new one if that one has been dropped too hard or is getting old, and whether you get crazy numbers on anyone else in the house. Never assume your first reading is written in stone or that it means death, ok?

In all my years, I've also discovered that there is such a thing as too much blood pressure medication. Logic would seem like the more you take, the more your blood pressure goes down, and then at a certain point you just don't take any more because you've reached your goal. Wrong. Blood pressure meds don't work like that. Your body will always try to keep your heart beating until it simply can't any more, and your fight or flight hormones will always try to boost your heart rate up if your body feels like it's getting too low until it simply can't. I didn't know for years that one of the reasons I was waking up with a racing heart out of a dead sleep was because my heart rate would drop low enough that my brain would kick it back up, and this didn't stop until I lowered by blood pressure med dose, even though my daytime blood pressure was staying above 120/80. It's actually pretty normal for blood pressure to drop and spike while you sleep, but mine was getting a little ridiculous about it. I seemed fine while I was up and moving around, but the second I went to sleep, boom, racing heart. I went to sleep clinic, no signs of apnea, wore monitors, no signs of any problems once my SVT was corrected, but I ran across an article at Blood Sugar 101 called Why is Blood Sugar Highest in the Morning? 

Taking a bit too much blood pressure medication can also cause your blood sugar to go up first thing in the morning. That is because if your blood pressure drops too low at night, the body will also secrete stress hormones to raise the blood pressure back into the safe zone, and they have the side effect, as we've seen, of raising blood sugar.

Again, the tip-off that this is happening is that you are likely to wake up at 3 or 4 a.m. with your pulse pounding, sometimes you will think this is because of a vivid nightmare, but it is more likely that the nightmare was a response to the surge of stress hormones that raised your blood pressure.

If you measure your blood pressure after waking, the main thing you'll see is a faster pulse. The blood pressure will be back in the normal, or even slightly high zone. If you raise your medication because the blood pressure is too high first thing in the morning, you may make the situation worse!

If you are waking up with a pounding pulse in the early morning hours and see your morning blood sugar rising, too, talk to your doctor about whether your blood pressure medication needs adjustment. 

That one article has saved me so much grief. I'm on less than half the BP med dose than I was on when I first read that article, and I feel so much better! Part of that is I've discovered other things that artificially raise blood pressure. The biggie for me was my birth control pill. My blood pressure had been high for years and I never thought to connect it with my birth control until I went through menopause and my blood pressure just went insane and nothing we did could control it. A doctor finally pulled me off my birth control and voila, blood pressure suddenly dropped and I had to cut my blood pressure medication dose in half. Then suddenly it went up again because (try to follow this, it's just ridiculous) stopping the estrogen suddenly sent me super hyper thyroid because evidently estrogen blocks thyroid hormone uptake and I therefore had to take a higher dose of synthroid for years, and suddenly the whole dose was being used without the birth control pill in the way, so my blood pressure surged again. (That's a whole lot of suddenly.) My doctor stopped the thyroid pill until that leveled out, then started a lower dose, and suddenly my blood pressure dropped again. That was two really interesting months, and I was a mess. But I've never since gone back up to as high a dose of blood pressure med as I was on previously.


I've had another pleasant surprise lately. I have discovered, as I am cutting all wheat from my diet, thanks to another dumb food reaction that took 2 1/2 weeks of prednisone to control, that cutting my carbs way down again is also having a very positive impact on my blood pressure, and I'm once again having to cut my medication dose and monitor every day. If my body winds up defaulting down to this new blood pressure default level, I might even be able to wean off my blood pressure pill (never cold turkey off a beta blocker). I'm very excited about that. In case you are on the fence about wheat and/or carbs and fighting your own high blood pressure battle, check this out. It's a bit of reading, but if you are desperate for relief and nothing is working, you can always try it. Sure worked for me.

Sorry so long, but I got to thinking about how I wish I could find more people just talking about their experiences with this stuff when I was younger and searching the webs for stuff in the night. I mean, not freaking out in forums or whining on blogs, but just talking about stuff, you know? Well, this is me talking. You are going to be ok, but you've got to want to get better bad enough to make changes and stick to them. In the meantime, learn about your blood pressure meds, practice taking your blood pressure, and don't feel guilty when it gets scary. You're not alone. I've been dealing with blood pressure pills for 20 years and it's still scary sometimes, but mostly because I hate the way my body feels and reacts when things change.

Pills are like bandaids, they are temporary patches to help us manage what should be temporary problems. Sadly, they've become lifestyles, and now it's all about managing our medications. Popping pills to fix things isn't the answer, but while we're having big problems, they are a relief, and they give us time to figure out what is going wrong and find ways to get our health back on track.


Sunday, September 28, 2014

I have this hair thing- spoonie hair probs

I have met many women of all ages losing hair. This is something that has been happening since my grandmother's time, and her grandmother before her, yet it's still not really openly talked about and still rather looked upon as not only a mortifying deformity, but a shame, as if it means we've lost the essence of our womanhood. It's becoming more acceptable nowadays to live with hair loss, thanks to women standing up to cancer, but one day I hope it can be more of a lifestyle choice and not a losing 'battle' that defines who we are.

Ever since I was a little girl I have dreamed of having blue hair. I never saw people with blue hair except in a Cat in the Hat book. Click this pic to shop for cute little Halloween outfits.


I see pictures like this nowadays and nearly swoon with delight. That clicks to a pin on my pinterest board.


I have always struggled with my hair. I was born puny-ish with very thin delicate hair, so I struggled mightily through perms and colors over a couple of decades in adulthood. The first thing I tried to hide, mostly by parting my hair differently, was part of my bangs having been incinerated to the skin on one side and it took a long time for them to grow back properly, even in my pre-medication days. Funny story- I was on a date at Pizza Hut, had one of those giant fluffy perms, leaned a little too far over the candle and *poof*, my hair was on fire. Yep, I am the girl that caught her hair on fire in Pizza Hut  in the 80's and the next day all the candles were gone across the land. Your urban legend lives and walks among you. Anyhoo, thanks to the chemicals in my hair and the flash blaze, the scalp where those bangs were singed right off refused to cooperate for several years and I just got used to covering a minor glitch and mostly didn't worry about it. Everybody was going punk back then.


I started losing hair in my late 20's during my first big flare up. I grew up not going to doctors, so I spent 9 months in low grade fever and getting really skinny before I finally got scared enough to see a doctor. The first doctor was really old and on the verge of retiring and knew nothing about the new 'fibrositis' and lupus stuff showing up in the medical journals. He basically told me there is no cure, that I'd be in a nursing home by 40, and prescribed a giant bottle of aspirin. My SED and RA scores were pretty high, my core body temp refused to go any higher than 94 on a thermometer, and I could barely walk. The last thing on my mind was my hair.

A few months later with new determination I saw a rheumatologist in a city clinic who told me I was skipping down a rosy little path to a psychiatric illness because I told him I was losing my hair and hurting all over, but apparently what he saw was a normal looking college aged young lady. Young female bodies can hide a lot of problems, especially for men who can't see past "You look fine". He never ran tests. I was so crushed that I couldn't go back to a doctor for awhile. I have no idea how I managed to hang in there, but I'm one of the most stubborn people I know. Other people have mentioned that my intensity frightens them a little.

In the meantime, I started making jokes about the scalp tattoo I'd be getting if I lost the rest of my hair. I wanted a treasure map, with sea monsters in the water part and a real X marking the spot on the land part, with a dashed line leading to the X. I pored over pirate maps picking out what would look cool on my head. Honestly, I couldn't see myself wearing wigs because I'm so aspie I can barely even tolerate wearing a ballcap or a knit beanie in the winter. I grew up with headscarves like you see in old fashioned pictures of third world mountain women, but I'm terribly resistant to the whole head covering issue for women, and I can't imagine me keeping a scarf on, either, even for aesthetics. Why should my head not be as free as any man's? My rebellion runs very deep, not against God, but against the silliness of the human race. If I were to lose all my hair, what better way to live with it than with an awesome treasure map on my head?




A year later I was so desperate again that I dragged from office to office in a different big city clinic begging to be seen until a doctor finally took me that day, and after saying "I hurt here, here, here.." in all the right places (I had no idea at the time) I was immediately sent for tests and on to a rheumatologist who confirmed severe fibro and autoimmune flare up, and after that they handed me a giant sack of medication samples and started experimenting on me, which I believe saved my life. By this time I was shuffling very slowly everywhere I walked, couldn't open doors or carry anything, and could barely write my name on a check or grip a steering wheel. I was 28.

Through all this and then through treatment, my thin hair grew thinner, but as I was still able to hide it, I simply did my best to not draw attention to it. As the years rolled into my 30's and I was able to slowly increase my activity level, I tried perm after perm and several colors, and my hair always looked ok, although hairdressers continually expressed shock when they saw my head up close.


I was in my late 30's when I decided I couldn't get any more perms without seriously risking killing out the rest of my hair growth. I scared a poor hairdresser silly when the perm rollers started detaching in her hands with my hair still rolled up in them. She freaked out and started moving faster, and the only way I saved the rest of my hair was to make her stop and back away, only looking on as I bent over the sink very carefully removing them myself. I'm pretty sure I'd have walked out of there bald that day if I hadn't been so bossy. I tried to reassure her that it wasn't her fault, but I imagine she had a few nightmares about it.

Somewhere in my 30's my eyebrows also started falling out little by little, looking patchy and odd enough to have to experiment with pencils and plucking. Oddly, I've never lost hair anywhere else, but at the time I remember thinking alopecia wouldn't be so bad if I never had to shave my legs again. I didn't realize it's more complicated than that. None of my doctors have ever addressed my hair loss. I think it is taken for granted in the medical community that women with medical conditions lose hair on meds and if we have a problem with it, there is a thriving wig industry to save the day.

Think about it- wigs and head scarves have always been there for women. Why? It's never been acceptable for women to lose hair, even though it's not uncommon. Hair loss in women is such an abomination that we close our eyes to it, cover it up, pretend it isn't happening. I hear men talk about their suffering through hair loss- well, at least it's socially acceptable. Men are 'allowed' to walk around with patchy hair and balding scalps without that much recrimination. Women? Cover it up- fast.

I continued to color up until 40, even though I didn't need to (I've still never gone gray), as my hair color grew more dismally 'flat'. Years of medications and illness took their toll and I felt like I was on my last leg hiding my hair problems. This was my 40th birthday. Little did I suspect that my long hair days were nearly over for awhile.


Part of the autoimmune challenge is the impact regular viruses can have on body systems. I got slammed hard one year and lost so much hair that I had to cut it off just to stay ahead of clogging up the tub drain and hair finding its way into my cooking, despite keeping it put up. Hair was everywhere. I was afraid to brush my hair, so I bought a big-toothed comb and barely even combed it after shampooing. I made sure nothing stressed out my hair. All it took was a clip or soft scrunchy to inadvertently pull more out, so cutting it short seemed like a logical way to at least keep it attached to my scalp. This is one of my last pictures with long hair before I chopped it. You can see my eyebrows were already gone. I've experimented for years with pencils and different colors, never really satisfied, but whadayado.


This was one of the hardest haircuts I've ever gotten in my life. I transitioned to short slowly but it was still a shock. I still hate looking at it.



Here I am in the same shirt as a couple pictures back, but here is a couple years later. I was feeling very sick the day I took this, you can kind of see it in my eyes.



Me on the rebound about a year and a half after the last pic, starting to feel better. I learned that if I kept my hair super layered all over and didn't try to do anything with it, no one seemed to notice how patchy my hair was. The second I tried to style it or pull it back, very noticeable. I have to note that if it weren't for my sister insisting on dragging me into a salon and getting professional advice on caring for my hair while I was ill, I might have given up and just never tried to be cute again.


It's been 8 years since that midway haircut in the purple shirt. My hair kept getting shorter and shorter until I almost didn't have hair. I still can't bring myself to make those pictures public. I looked so bad during my sickest year that store employees would offer to get me wheelchairs and bring me things. That was harder to deal with than being sick, so I stopped shopping for a couple of years. Is it any wonder people become psychologically homebound? If I learned anything from my personal experiences it's that constantly having one's hair problems noticed can have disastrous personal repercussions in private later. My greatest asset during this time was having Asperger's, but even with the cushioning of a general lack of self awareness, I still had to face people reacting to just seeing me. After a year of curling up and crying in my cave I decided I'm done with that and proceeded to get very good at helping other people feel more comfortable around me, which is a huge social leap for someone like me.

What's interesting to me in retrospect is that I never was the sort for taking selfies until I got sick. I have loads of pictures of me with horrendous bedhead and really bad hair after I cut my hair off because I thought it was so funny. As I've begun feeling better, I keep taking really oddball pictures because I still think it's just so funny to be silly. I guess after going through the scary sad stuff for so long, it's a relief to come through to the other side and realize life is way too short to take that seriously. Here are some of my favorites.






This was Halloween last year.


Glue in my hair after an EEG.



I was prepared to live the rest of my life with icky and maybe even no hair. I reached a point where I was feeling better enough a couple of years ago that I realized I no longer care about my hair. I could lose it all right now and still be a happy person because there is just so much more to life than hair, especially when you've nearly lost everything else, too. I know that's hard to fathom, but it's kind of like realizing that the thing I was most unhappy with my entire life no longer had power over me.

I've talked in another post about getting healthier with diabetes and autoimmune problems by getting off unnecessary meds and changing one's diet and what a drastic impact that can have on skin health. I'm not here to say get off your meds or to tell you what to eat, but I do have to share my surprise- a hairdresser noticed a couple of years ago that I have new hair growth. Whaaaa???? Guess what. This came after a post I wrote called my problem with healthy food. Ever since I changed my diet, I have been growing new hair. It's been really slow going. I didn't notice it myself for a long time, but eventually I could tell it really was getting a little thicker, and best of all, had stopped shedding! I had become so accustomed to shedding hair for years on end that I couldn't believe it. I stopped being careful and started yanking my hair around to see what would happen- it stayed in!

It's been almost a year since I first posted about growing my hair back out. I didn't say much at the time, mostly because I'm not holding my breath. I know at any time I could plunge back into the black spoonie abyss with a flare up and more meds, and that every time something like that happens my tissues must recover from a lot of damage. Recovery and rebuilding tissue are two separate things. Recovery goes on all the time. Rebuilding can happen only when I have enough good nutrients coming into my body to spare for it, otherwise it all goes to sheer daily survival. The fact that I can actually grow healthy hair after twenty years of hair loss is stunning. It means something is working and maybe I'm on the right track. I hope. It means I'm finally on the winning side of inflammation going on all over my body, including at the roots of all my little hairs.


I know better than to assume my hair is 'back' and will continue. Yes, I hope it does, but if it doesn't, I don't want to wind up in a bitter puddle on the floor. I've been given a little time to enjoy my hair again, so I'm growing it out. I really missed having a french braid. Unfortunately, in recent years I've become too allergic to hair products to ever get it colored again, but I still love looking at other people's photos of them having fun coloring their hair vivid purples and pinks and greens and stuff. I love that it's becoming more acceptable to have fun with hair, and that people are so creative with their hair.

Now that the internet is so prolific and making everything easier, I'm finding all kinds of ways to have fun with hair. Too bad I didn't know about eyebrow toupees when I was younger. I get hives with adhesives now, so that one is out. And of course, now you can find every kind of wig style and color imaginable, so who knows, I might eventually wind up playing. Knowing me, I'll have more fun with it than most people, but isn't life too short NOT to have fun?


Click this next one to see a lot more blue wigs.


I made a huge mistake last winter and cut my hair off again after Christmas, on the advice of a new young hairdresser who insisted it would help my hair continue to get healthier. Sadly, I have wound up on prednisone a couple of times since then, and also had to change my thyroid med dose and start another med, and my hair growth has slowed down in response. I noticed my fingernails and hair are pretty synchronized on the ups and downs, so as I get a little shedding again, my fingernails also suddenly started peeling again. I know this is a protein problem and I need to stay on top of getting enough protein in my diet, but meds make it hard to eat right. If I want the hair, I have to give it a solid chance. If I don't want the shedding, I have to cut the junk food and keep it as easy as possible for my body to sort through the nutrients and use them well. If my systems are distracted with sorting through junk that slows everything down, the protein winds up going to continual recovery instead of rebuilding tissue.

This is my hair ~right now~. I never dreamed I'd ever see it like this again. This is the healthiest my hair has been in a very long time.


I'm going to get real brave and show you why this is a big deal, and why I'm ok now with losing all my hair if it comes to that. And I want all my friends and family to know it's ok to keep showing off your own wonderful hair and colors and perms and styles and all the fun you have with your hair, because I'll still love looking at it.

This picture is for all the women who are sad about losing their hair because of illness and cancer and hormones and stress and accidents and whatever else happens.


And this is me saying Don't despair. Maybe spray paint your scalp with glow in the dark and glitter and I'll be right there with you when the time comes.


If I ever lose all my hair, I'm going to have a ball and post selfies like crazy. I'm not going to cover it up or hide it, and I'm going to be happy that I'm still around to love my kids and grandkids. Well, ok, I'll wear a hat in the sun and bitter cold wind, but you can bet it will be a ~fun~ hat.