that cheerful Howdy! hasta stop

(copied from original post on #pinkyblog)

I have done my planning, my shopping, and yesterday initiated my original paleo / South Beach / Rosedale health plan combo diet. The only thing I purchased with Rosedale was the book (used, spent under $2), didn't buy anything else or take any supplements, and the rest I just studied online and did on my own.

Back around 2009 I had become desperate and bent my mind around putting together my own health care team. By 2011 I was cleaning off years of medications and lost 50 pounds in 4 months, but it took a lot of research on how diabetes actually works, how 'nutrition' is skewed into the wrong foods by big companies, how to survive without medications by actually paying attention to what I put into my own mouth. It's work paying attention and keeping track, but it's very easy with all the mandatory food labeling we have nowadays.

This is my public trail through healing.

pill phobia at its finest - coming out of the stupor of medication addictions, poor medication management, over prescribing

my problem with healthy food - challenging the healthy grains concept

Holidays With Diabetes- Easier than you think - An easy way to understand what the holidays do to diabetics

Diabetes and Steroid Meds - Surviving steroid treatment for other chronic illnesses and allergic reactions while maintaining control with diabetes

I've come a very long way since I wrote those articles. I've slipped off my own path a bit, regained a little weight, backslid into pain complications and medication problems, and now I'm very tired of 2017 dragging on like this. Time to get my control back.

Because I keep after continual physical therapies throughout the year, I am still not only maintaining function around my home, but keeping up with far more activity than I ever dreamed I could do. I still can't get on my knees at all without destroying them and have almost continual pain somewhere in my body during everything I do, including reclining and sitting, but it's manageable. However, I've lost my grip on that manageable part a few times this year, and I want it back. Part of losing that grip is because I'm slipping on my nutrition planning, and it doesn't take much for the diabetic headaches and slower healing and stomach problems and nerve pain to pop back in my door with a cheerful Howdy!

It's too easy to grab quick and starchy bites on the run because I have high energy young people in my house now. I must menu plan for MYSELF and stick to it. I work around food allergies, so I heavily depend on dairy for proteins, but some dairy has lactose and lately my glucose spiking is worse on lactose because of my new blood pressure pill. So, I bought an extra dozen eggs this week and boiled them up. One boiled egg a day will replace my second cup of coffee with creamer (canned milk).

I also bought bacon. Bacon gets a really bad rap when it's actually much better for you than cookies and cake and pie and spaghetti, especially when you're diabetic. It's easy to cook up a package of bacon and then keep it on hand in the fridge. When others grab a cupcake, I can grab a piece or two of bacon, and later I can use the bacon drippings to cook up a big load of pan roasted brussels sprouts, which are even more awesome with aged balsamic and grated parm.

Guys, I lost 50 pounds in 4 months one year without even trying just doing THAT and stopping when I reached 1500 calories. I could nibble all day and still dropped 5 bowling balls off. It never really hits home how much we carry around until you pick up a bowling ball and go wow, that was IN ME.

Anyway, I reached a point in 2011 where I felt like a skinny fat person, which was really fun for new clothes (got down to an 18), and I would really like to go past that now. I've been in size 20 jeans for awhile and if I'm going to be having difficulty with pain and possible falling (the klutz is becoming strong again), I'd like to be easier for others to help getting back up, knowhutImean? So I bought butter and bacon and eggs and cheese and brussels sprouts and broccoli and lettuce (I love lettuce wraps around chicken tenders!) and stuff like that, and let's see how the rest of the year goes.

I've been hovering just above 200 pounds for months, I wanna break through that. Can I do it? I've never lost weight on gabapentin before, plus I'm back on low dose xanax and still on daily zyrtec. In 2011 I was NOT on meds bossing my weight/water retention around, because I had spent 3 years cleaning off most of my meds and got into physical therapy. We'll see what happens. I do know that I gained weight this year on baclofen and higher doses of gabapentin, so the baclofen is gone and the gabapentin is back on very minimal pain control.

I. Want. This.

click for more fall gifs

Pinky sent me to my room until I can behave better

One of the fun things I deal with is diabetes affecting fibro, like neuropathies on top of a nerve disorder, which ramps fibro up from the vague chronic to the immediately acute in very specific locations, and the best way I describe how it feels is like mini gout spread out in joints all over my body. I say mini because I'm not wailing and flailing, but definitely limping, easing, and grunting my way delicately around the house as an old sciatica flare suddenly ages me 30 years and every toe and finger joint feels broken and my elbows whine about every move I make with my arms.

That's the kind of stuff that gets me really smart. I dig around in the webs and learn stuff about purines and uric acid and medication side effects and how common a lot of this stuff really is.

Oh, baclofen, how ye stabbed myne backe. Heavenly addictive, cruelly mocking, and secretly cranking up the ol' glucose knob, which over time floods my body with trash that my kidneys can't move out fast enough. What a hilarious thing, right? A pain med that is heavenly actually jacking up my pain more horribly than it was in the first place.

This is nothing new. I've been here before, many times. Years of meds, years of weird pain reactions, years of peeling back off meds and recovering.

So how long does recovery take? Because I gots things to do. *looks at watch*

Priority is giving my body time to get the trash out without heaping more on. May was a jolly month and full of good food, and baclofen makes it soooo easy to join the fun. SO. Junk food stopped (ketone buildup) *check*. Stopped most of the animal protein (purine backlog) *check*. Exercise is mild and low key (uric acid buildup) *check*. All over hydration (taking out the trash) *check*. Joint pain less acute today than yesterday *check*. But this is obviously going to take a few more days. I used to joke about hitting my wall, well, I'm STUCK IN THE WALL. My body is all wtf how did we get in this wall?

I actually disagree with this pain chart. I'm not a smiley sort of person. I always look a bit 4-5 on the upper row. If I'm hitting a 9, I probably look kinda stabby because people sort of stand back a little.

My blood sugar is coming down a little. Random check on empty stomach today was 102. It needs to be hitting 86-92 range for optimal. That's when I feel really good and have energy. Doctors don't fuss over it until it goes over 126, by then it's affecting organs and you need meds or a very big lifestyle change to slow that down. If I'm hurting all over at a steady random of 107, that's a great big red flag. Took awhile to figure that out. Life grinds to a stop if I'm not controlling. Those of you laughing because it's not something like 140 and you're used to 160+, I'll share that I've clocked anxiety attacks at 140 glucose without fail and nasty headaches by 200. If you are having headaches and anxiety attacks AND you are diabetic and eating junk, I swear that can all stop.

But yeah, I hit that big anxiety out of a dead sleep couple nights ago, and that's when it really got through that the baclofen is no joke and maybe I need to decide just how much I'm willing to get wrecked back up in trade for freedom from a perceived pain level.

living with a med addiction

This could have been miles longer, but I'm learning to cut it way down.

One month on baclofen, and having obvious issues with it. Latest issue is altered mood states, mostly super cranky, underlying issue I found out a few days ago is it raises blood glucose, which might explain the 15 point rise in my fasting glucose and the subsequent pain loop induced as neuropathies worsen with diabetes flares.

First dose was heavenly, but I could sure feel it wearing off, which I didn't realize was a red flag. Second dose (next day) less heavenly, sucked wearing off. Continued one dose per day for a week, which helped with the immediate problem in cervicocranial stiffness and pressure, and decided to half the dose. Wow, only one week on 10 mg a day and cutting to 5 mg was nuts. The next day I took 3/4 of the pill and did that for a couple weeks. Could tell this would be a problem and looked up the med specs.

So I'm a protracted withdrawal benzo patient who cleaned off 2 decades of regular low dose benzodiazaine (and all other meds) for 2 whole years, back on super low dose xanax in lieu of head meds backfiring, also now on low dose gabapentin for a year (higher doses were a nightmare), and now on low dose baclofen "as needed" (right, a script for 3x per day doesn't actually spell 'as needed'. So glad I never did more than once a day in retrospect). Basically, I'm on a cocktail of receptor meds that seem to be locking me back into addiction nightmare, and they're not playing around.

Add to this a swedish massage for neck, back, and shoulders, actually barely touching neck this time, and I'm waking up in panic attacks out of a sound sleep 2 days later, fibro reaction to hands on (even gently) plus med edginess from dosing down, can't even begin to describe what abruptly waking up like that is like. Adding a background of years ago car ejection survivor with unknown possible brain injury (around brain stem at that) and I can't tell if this is just med taper or an actual problem. I'm obviously typing just fine at 2 a.m., so I'm leaning toward protracted withdrawal rearing its ugly head. The crazy heart racing and panic (complete with weird numb and temperature change surges) absolutely would not calm until I got out of bed, got dressed, booted up my laptop, and started typing. Welcome to med addiction 101, where the internet in the wee hours is your best friend.

It's hard to prioritize like this, but seems to me the most recent med is the easiest to get back off, right? Looked up several sites with taper advice, and baclofen is looking worse than xanax, and xanax was hell enough the first go round. Check out this forum asking the question Can Baclofen reset benzodiazepine withdrawal symptoms? That's about the most eye opening thing you'll ever read about patients knowing their stuff. Using these kinds of forums was how I was able to clean off 2 decades of opiates and benzos. And if you don't understand all that big junk, lemme sift it down to *easy* for you- Always go real slow getting off your meds. And if at all possible, best to let your doctor know you're doing it.

I know there will come a point where I will need to stick with the big guns the rest of my life, but I prefer to hold out on that option until I'm actually crippling up and super miserable again. I can't believe I keep getting these big prescriptions for stuff that barely even shows up yet on scans, and actually more dangerous than simply just monitoring me on one receptor med like xanax. Being on 3 different ones while dealing with side effects on top of real life problems seems a bit exaggerating.

Anyway, boiled down, I clearly can't stay on a daily med pulling the ol' alt mood thing on me while it pumps my blood sugar out of my control, so here we go, time to deal with real. I will go back to bed now, fully clothed, knowing that this all calmed down and, aside from tight neck muscles, I'm fine. It's just my nervous system going crazy while my brain receptors readjust.

June promises to be a long month, which seems fitting since 2017 has been a great big grinder all along anyway. And when do I not glory in suffering? I really am at my best when life sucks harder than usual.

I started writing about medication addictions in 2008 on my Bluejacky blog, much of which is now private, so I've got 9 years of medication addiction personal blogging under my belt. So much is out there that I don't feel I need to add more, so I rarely bring it up nowadays. Tonight was courtesy of Pinky, who says it's important to keep integrating #allthethings. Tonight's post was brought to you by super spoonie aspienado.

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.

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.

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.