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.

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.

a plan that works- spoonie survivalist

Yowza, back to start another round of physical therapy yesterday. Ideally, lower back core strength would be pool work, but being around the pool sets off asthma (chemicals?) and winds up counterproductive. I started out that way in 2008 and loved it, but breathing kind of takes precedence.

So yesterday it was back to balance workouts, and then deep tissue ASTYM, which I think actually gets more work done in half the time anyway because it pinpoints and concentrates on problem areas instead of continuing to use general overcompensation while strength training. I work with weights, balls, stretchy bands, and sometimes foam pads that force me to fine tune balance even more.

I am usually the youngest person I see in physical therapy, unless someone else has come in for athletic or accident related injury. Most of the work is older people trying to regain mobility and lower their pain levels. Since I've already been through nearly complete immobility and screaming high pain levels, I have a lot of empathy for them being old on top of it.

I was told by the very first doctor I saw in my mid-20's that I would be living in a nursing home by the time I was 40. Back then, before 'fibrositis' was a thing (now fibromyalgia), it wasn't that uncommon for people to wind up in severe contractures as they grew older, to the point of great suffering and losing ability to care for themselves. One of the focuses we learned in nursing school was how to care plan around patients with contractures. I saw very clearly where I was headed if I didn't get a handle on living with severe fibromyalgia complicated with autoimmune flare ups. Having diabetes with it makes it monumentally worse because ketones further slow down vital nutrient flow through the muscles. I watched my mother disintegrate into 'frozen shoulders' and severe physical and cognitive deficits before she finally died in a nursing home. If everything I'm going through is genetically inclined, I know exactly how it's all going to end.

click this for cute story

But not if I can help it! There is so much new knowledge nowadays. In 2008 I made the decision to taper off medications that didn't improve my quality of life in either function or pain control, and now I'm nearly free of meds. I put together a care team of my own that included my regular doctor (who refers me as needed to pulmonologist, rheumatologist, cardioloist, ENT, allergist, etc), psychologist, and chiropractor. I coordinated all this with my endocrinologist and gynocologist. It helps being in a system like Mercy that is software integrating all my medical info, but I started this self integration before they had that technology in place. It takes some effort and focus, but taking that first step to become my own health care advocate was the beginning of me changing my life. I know a lot of people who still have unsynchronized medical charts between widely disparate clinics and doctor groups, and I can see how this hampers the help they hope to get, especially if they're not very good yet at communicating to every doctor they see. My psychologist helped me learn to communicate my needs and goals to my doctors, and that made a lot of difference.

Disability is an unfortunate part of my life, and I resisted for years. I hid my problems as best I could until I quite literally could no longer function and started making big mistakes at work. It felt like my body and mind were closing down and I was trapped inside, and everything got really hard. It was hard to move around, hard to interact in social settings, hard to think. I even discussed becoming a nondriver with my doctor. My driving got pretty scary.

funny pix when u click

Fortunately, I discovered that Medicare has strong physical therapy support and encourages people to use their yearly programs that are designed to channel the patient's needs through one-on-one assessment and training. I couldn't see how this could help at first, but a new wave has been sweeping the country- ASTYM is all the rage now. I am one of the first in my area to go through comprehensive ASTYM therapy along with core strength training with several different therapists because I'm stubborn and want to get healthy. Because I accept that 1- I must work for this, 2- pain is ok and not to be avoided (many people stop because the pain doesn't stop right away), and 3- it really is up to ME being persistent to properly heal, I have regained not only a world of mobility I had lost for years, but also the strength and endurance to keep moving. I am able to do things again that I held no hope for in my future, and much of it with drastically reduced pain levels.

I still have rough days, weeks, even months, but I know now that I don't have to backslide to darkness and despair. It's up to me to be a vital person. It's my choice to work hard so that I can continue to be useful in this life. It took quite a lot of grit with no promise to cling to when I first started out. It's been 6 years since I began my first physical therapy. I've been able to avoid several spinal surgeries, many cortisone shots, and have probably reduced my fall risk by at least 80%. I'm not pain free and probably never will be, and every time I take a break from physical therapy the old stuff tries to creep back up on me. This isn't a cure. But it has become a lifestyle, and I'm grateful that I stuck through it this long because I'm reaching a place where life feels better, I feel happier, and I actually have hope for my future now.

I'm writing all this down because I remember how I used to search through the night for other people like me- how does one survive? How does one get through this hard stuff? How does one hang on when everything utterly sucks and life looks so sad? Especially in the wee hours of the night when there is no one to talk to.

I am drawing a road map. I'm finding my way through this jungle, and one day I'm going to make it easy for all of us to follow the map. In the meantime, this is me checking in on another prednisone taper and another round of physical therapy.

lol

the shock of feeling normal

Kind of in a o_o place, but I'm liking it. Highest prednisone dose I've ever been on and actually feeling pretty good. I forget what it's like to actually feel good grinding through several months of rough.

And apparently I'm getting the hang of this, fasting glucose this morning was 88, blood pressure 134/80, ongoing food reactions and hayfever allergies finally seem to be controlled, and I'm SLEEPING. Huzzah!

In the past I've had some real love/hate relationships with steroids, and since it's only my third day I'm sure I'll run into something later as I'm tapering. This is also the longest taper I'll have been on, 12 days. Actually 15 total since the reaction breakout and the restart. I've known people who literally just live on prednisone for months at a time and always wondered how, because in the past I've been fairly miserable on it, but that was mostly before I understood how to control my blood sugar, I think. I've also gotten the bone pain that comes with steroid use, which I can very honestly say is THE worst pain in the world, including childbirth, kidney stones, migraines, and being thrown out of a wildly flipping car during an accident. Bone pain is its own speshul thang. This list of side effects is a bit excessive, but yeah, always risks. I've been on and off prednisone at least once or twice a year for nearly 25 years, thankfully in shorter bursts, but it's cumulative over time and I'm very lucky to be in as good a shape as I'm in.

Guess we'll see how it goes. In the meantime, such a relief getting past the last two months of packed ears and sinus and the resultant losing battle with continual histamine spikes. Histamines affect body systems in all kinds of ways and impact other health problems, and suddenly sent me cycling through a series of pre-crash scenarios because system overload. Of all the things I've lived through, I think the most ironic way to croak off would be my own body overreacting and shutting itself down during cytokine storm.

So this week is all about getting back on track, workworkwork, keep slamming through as much as I can while I can, and actually enjoy it because I feel so much better! Yay!

medic alert tattoos

As per yesterday's wheat allergy post, really tired of phenergan for awhile. I've had 2 IV pushes in 2 weeks and the most common phrase associated with that drug for nasty side effects is 'corrupt the vein'. Same vein, same place, second person was young and impatient, it went in fast and hard and hurt like crap. I asked her to stop several times. Wonder how many patients she has 'corrupted' being impatient. We're talking necrosis and surgery to fix this kind of stuff when it's done wrong. (Bet you guys didn't know there is a whole branch of science about how intravenous meds affect veins.) So far everything is looking ok, but my whole arm ached for 24 hours. Not to complain too much because I know people who've been through far worse, but that same vein has been blown out during pre-surg prep, ripped open tearing out the IV on a handicap bar in a bathroom, ripped again Thursday getting the IV out, blood everywhere... I'm about ready to get a tattoo down my left arm that says DON'T USE THIS VEIN. There are a bunch of medical tattoos on pinterest, click this if you want to check it out.

nutrition is taken for granted

This post is a desperate attempt to rip myself away from twitter on my phone. I've been up since 2 a.m., thank you solumedrol, and now I need to pull all my focus into getting out my door in a couple hours for an appointment with a nutritionist, which cracks me up. Gonna be fun meal planning around nut/peanut (includes mangos bcuz in the pistachio family), all citrus (pervades all things that taste good, avoid 'natural flavors' that spike flavor in prepackaged foods including salad dressings, sauces, and condiments), the bananas-avocado-potatoes trio because of latex, and now wheat. Which I'm really not supposed to be eating anyway because I'm controlling my diabetes without meds, and wheat in everything spikes glucose as badly as sugar does. I'm looking forward to a very interesting meetup, and it had better be for $84, because insurance isn't paying for this one. I figure I need the moral support right now, though.

Since my parents didn't believe in doctors and I was so terribly aspie (failing to communicate well) through most of my adulthood, it took a really long time for me and my medical team to figure out I'd been living with food reaction induced asthma for several years. I lived on cough drops for a decade before I got an inhaler, and then lived on advair for 9 months before it dawned on anyone I might be having deeper issues. When I finally found out I'm diabetic and changed my diet, a lot of that went away because I was severely curbing the carbs, and I discovered a carb rich diet was also causing other problems like IBS and bad headaches. Lost 50 pounds and started feeling a whole lot better.

Then the airway problems ramped up. Cashews were first, and it was nasty. I'd been eating cashews for years, so that was a big surprise. I was already suspicious of peanuts and had stopped eating anything with peanut butter because I was tired of the itching, but that blew up along with the cashews, and now I can't even touch something else that has touched something with peanut in it without itching and actual swelling. I purged my house. Then came the lemon. I'd already cut out orange juice for severe heartburn and limeades because my mouth went numby and tickly, but I love everything lemon. When that finally scared me with airway, I was almost devastated to give up lemon juice sqeezed on crabcakes and the rare piece of lemon pie, my fave dessert in the whole world. It's terribly difficult to purge citrus. Lemon isn't legally bound to be listed as an allergen and can get away hiding in ingredient lists in the form of 'natural flavor' in everything from salad dressings to condiments and sauces. I started making my own salad dressing. I was thrilled to find Annie's condiments and dressings, I can finally eat ketchup again without a reaction. Click this pic to go the to Annie's site. It's my way of saying thank you to them for helping me enjoy eating with all this going on.



So. Now it's wheat. This is my second round of steroids in 2 weeks and I got the rash this time along with the itchy tongue and croup. My allergist told me last year to take 2 zyrtecs twice a day and eat anything I want, and if I have a reaction then throw in some pepcid and claritin, crank benadryl round the clock for a couple days, and if I decide I can't live with the reactions, go in for steroids. Well, besides no one being able to live on that much zyrtec (my regular doctor pulled me off it after 3 weeks because I was such a zombie he was afraid I'd have a traffic accident), it's actually kind of dangerous to just keep putting your body through continual autoimmune reactions. And dumb. And sucky. Very, very sucky. No food on this planet is worth the suck I've gone through.

Let's put this into perspective, for those of you without food allergies. I can't walk into a bar without risking my life thanx to nuts and citrus. I can't eat anything out of a deli, fast food, or restaurants because of cross contamination with allergens. (Believe me, I've tried.) I can't enjoy other people's homemade goodies or potlucks no matter how diligently they try to cook for me because they don't realize how cross contaminated with allergens their kitchens already are. I check every single package before I handle what's inside or eat any of it. I'm braced for a reaction 24/7 everywhere I go because people naturally eat candies and foods and touch everything without washing it off their hands. And NOW I'm facing no birthday cake or nibbling on holiday goodies. Not even an oreo, which is peanut-free if I stick to the regular Double Stuf.

I hope you guys appreciate how much I really don't whine about this. And I hope I never ever EVER become allergic to chocolate and dairy because Hiland chocolate milk and packaged cheese is my go-to on the road.

Ok, those thoughts are organized and pushed out of the way now, time to wash my hair and get ready for the nutrition counseling.

human error, medical records, and making our own decisions

Loving the new centralized medical records I have access to now online. I can see that just before Christmas in 2010 two inches was temporarily added to my height, and right after New Year's in 2011 a hundred pounds was suddenly added to my weight. My highest recorded blood pressure over 4 years was 194/92 and my lowest was 99/66. My slowest recorded pulse of 60 was on Valentine's Day of 2013, so I apparently wasn't a hot date that day. I can also see that my CMV test came back negative for reactivation, but you can see I am a positive carrier.

 

I've been worried about CMV reactivation since I got home from vacation in the middle of May, thinking maybe I got too run down. It hit me a few days ago that part of this weird bloating and pain and super fatigue *might* be the pain medication my doctor had me try last April and then take on vacation in May, which, yes, was a lifesaver, but now that I'm back home I can tell that it's a crutch and taking it every day might be causing some very unhealthy side effects. (I'm always the person who gets the rare side effects, and I seem to be hitting a jackpot this time.)

I was diagnosed with a liver condition called NASH some years ago after one gastroenterologist strongly advised me to stop taking Ansaid, which I'd been on for ten years, so I imagine it could be likely that a similar medication might irritate the crap out of my poor innards. So I stopped taking it, and whadayaknow, my tummy is deflating, eating isn't hurting any more, and my increased heart rate and blood pressure are coming back down. I was feeling so rotten that I even wondered if maybe I had a kidney infection, but I never got a fever or other symptoms for that.

I have to give serious consideration to weighing the pros and cons of meds since I have an inch long spot they watched on my liver for a couple of years, so here we go, time to wing it again, off the meds and just dealing head on with whatever hits me again. Beats living with feeling like I have pancreatitis. If you've ever had that or know anyone who has, you know it SUX. I'll take fibromyalgia and trigeminal neuralgia any day over that and my liver swelling up again.

So now that the big drive to Houston and back is over, I'm back in ASTYM therapy and menu planning around higher protein intake and lots of raw veg and salads, hoping to get past this fatigue wall I keep crashing into. Crossing my fingers that stopping the med solves the problem. Stopping meds has worked wonders in the past.

I don't advise cold turkey withdrawal for anyone who has been on meds for years, and I strongly recommend you don't do it without your doctor's knowledge. I've been through some nasty backlash withdrawals that had me going back for 'rescue' meds, but in the long run, I've been much healthier getting back off meds than staying on them.

Meds are awesome for short term rescues, but when they become bandaids they turn into epic fail, and a body can become so dependent on multiple meds to keep functioning that suddenly cutting them off can result in catastrophic events. It takes a lot of grit and planning to untangle and extricate oneself from handfuls of medications and find ways to get healthy despite being in very dire straits to begin with, but it CAN be done, if people wanna live bad enough. It's too easy to medicate and let stuff roll over you till you finally just die, but either way, you die in a lot of pain. Handfuls of meds do. not. stop. that.

There is a lot of pressure to take medications, and sometimes they really do help. I grew up mostly without doctors, partly a religious or belief choice my parents had, but that was replaced with gimmicks like you wouldn't believe. I still can't walk past certain sections in health food stores without feeling ill and nearly throwing up because of all the stuff that my mom poked down my throat as a kid. None of it cured illnesses, and none of it prevented more illnesses, especially diabetes.

Our bodies are very good at handling problems if we make sure they have the materials they need to do that. Science has already confirmed that good hydration, plenty of good sleep and rest, excellent nutrition, moderate exercise, and finding ways to lower our stress do more good than anything, whether we are on medications or not. It doesn't matter how much you wax your car, if you don't change the oil once in awhile it's going to start wearing down. Likewise, we can put on all the makeup and pretty clothes and lotions we want, but if we're not eating good food and running around half dehydrated from sugary drinks and excessive alcohol, we get gunked up inside and our bodies have a harder time working right. We call that growing old, but I have been reverse aging since I weaned off my meds and changed my lifestyle. No gimmicks.

This is hard, and I'm going to miss my crutch again. It's nice having a few hours a day where I don't feel so rough. But I have to be honest with myself, it's also scary to think I could slide back into that complacence where I pop a pain pill instead of getting up out of my chair to do my stretches and then move around getting a little exercise because I don't hurt quite as badly when I'm moving around. Pills make it too easy to be still. Medications make it too easy to accept less than optimal conditions for my body. One little pill every day is making me lazy and sloppy, and I'm watching all that hard work to better health slip away again.

It's a choice. I don't blame anyone for wanting relief in their lives. But I want to win the game. I'm going to be the one crawling out of the muddy ditch and capturing the other team's flag while the rest of you slobs laugh it up getting wasted. 


My way of whistling in the dark.

pill phobia at its finest

I have felt like this the last couple of years thanx to zealous overmedicating by my doctors.  Coming out of my stupor now.  New year, new things, feel like a new person.

Briefly, it's pure and simple medical mistakes.  I was already on 3X the blood pressure med I really needed (ironically, that can force your heart to freak out and go into panic mode, making it look like you still have high blood pressure), was put on a daily inhaled steroid after no one caught that I had an allergic reaction to my rarely used rescue inhaler last spring and assumed instead I had asthma, those two meds wreaked enough havoc to spike my blood sugar into crazy mode and now I've been labeled diabetic, and in the middle of all that, my thyroid went beserk and they bumped up the dose.

In January, after months of this cascading domino affect with no supervision because my old doctor left her practice in September and all her patients dangling, my body exploded.  It felt like the worst anxiety imagineable, and urgent care only told me they don't handle anxiety.  Finally got in to a new doctor after the new year and he had the wit to ask if NO one thought I might be allergic to my rescue inhaler and sent me to a pulminologist.  Went to PFT lab-- no asthma.  At all.  It's all med-induced.  Then we started trying new blood pressure meds, that went absolutely nuts and I went through 5 changes in 3 weeks.  Wound up back on the original-- only a third of what I'd been on before.  That was a horrible experience, 3 solid weeks of super high BP and racing pulse, only to find it wasn't necessary.  And after I got those meds figured out, my blood sugar started adjusting back down.  By itself.  I wasn't even taking the meds the doctor gave me for diabetes.  I used a glucose monitor and just watched it, studied online what to do, made lifestyle changes, and I'm nearly back to normal now.  Now I'm getting test results back that I've gone hyperthyroid since everything else is settling back down.  Once again, time to back off on a med.

How many people on this earth spiral into 'natural aging' through overmedicating?  I had reached a point of near immobility, severe disability, unable to function even cognitively.  Now?  I'm able to do daily walks without gasping for air or collapsing from severe fatigue, I can think again, and I even started doing things like cleaning out drawers.  I hadn't cleaned my house beyond dishes and laundry for two years.  Can only wonder where I'd be if even just one doctor had looked at me holistically, the whole body responding to all my meds, systems affecting other systems.  Everything medical nowadays is so standardized, you get this test result, you tweak that med, you have a problem, you add another med, usually something like an anti-depressant to calm the patient down, and then those are a real biatch to get off of because some of them are more addicting than heroin (so I've read).

I don't recommend that people just start getting off their meds, but after that wild cascade I went through over time, I can see why our society is so full of chronically ill people.  I have spent my adult life in pain and fibro and autoimmune problems that started with a bad car accident and damage to my spine when I was 19, but the resulting over medicating through the years with anti inflammatories and steroids crashing me slowly into organ damage and despair and nearly complete immobility was ALL MEDICATIONS.  Once you are taking meds to fix side effects of other meds, you are on a downhill slide, and there is no coming out of it.

I can't say enough for a good chiropractor with a physical therapy staff, a kind psychologist who gets to know you well, and attempting to eat healthy and get a little exercise.  Study your meds, observe your own body, don't assume doctors will 'save' you from your own ignorance.  And bless those that actually try not to hand out easy meds.  I'm done being a guinea pig lost in the medical maze.  If all I have to do is stop drinking pop and eat some salad to save tens of thousands of dollars in medical bills, huzzah!