~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Sunday, September 28, 2014

I have this hair thing- spoonie hair probs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This was Halloween last year.

Glue in my hair after an EEG.

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, September 20, 2014

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.

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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.


Tuesday, September 16, 2014

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!

Saturday, September 13, 2014

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.

Friday, September 12, 2014

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.

Tuesday, September 9, 2014

If you got a terminal disease what would you do?

Originally posted 9-23-08.

We’re *all* terminal in the end.  I’m a ‘slow’ terminal.  I’ve already lost a niece who was born terminal but lived to 20, in spite of all medical odds.  So define terminal here.  I was diagnosed 20 years ago, I’m lucky I’m still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body.

So someone is asking, what would I do if I found out I’m terminal.  Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn’t go into organ failure first, what would YOU do?  I went to college and got my degree.  I went on to grad school.  I raised a child as a single parent and then remarried and helped raise another child.  Every day I prayed that I would live long enough to see my children grown up.  Every day I did laundry, made meals, and somehow made it through my day.  Recently, just this last winter, I faced that I might die from liver involvement.  But here I am, I’m still doing laundry and making meals.  Slowly, with lots of rest.

What did I do?  I faced it and kept LIVING.  I didn’t ask ‘why me?’, because statistically, why not me?  Everybody’s got something, right?  I didn’t blame God, I didn’t hate my body, I didn’t go on big campaigns to fundraise for a cure for my disease.

What did Stephen Hawking do?  He helped flip the world of physics upside down.  And dang, he’s still alive, too.  Some of us just won’t die.

Being diagnosed with a terminal disease isn’t a license to feel sorry for yourself.  It’s not a ‘get out of responsibility’ card that says you are now free to smoke and drink and do whatever you want to your poor body.  It’s not a sign over your head that says you get to go to the front of the line for a free meal.  In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don’t know how to deal with it, and that you won’t be able to keep up with the fun stuff any more.  So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you.

If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it.  Have a good cry, have another good cry, and keep moving ahead.  Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you.  Communicate with your medical team, talk to a counselor, and don’t be afraid to ask friends and family for favors, and tell them thank you.

Oddly, for those on the brink and about to step over (I’ve seen this a few times), some feel the need to reassure the ones they leave behind it’s ok, even though inside they are scared out of their wits.  They can walk up to the bridge with you, but you step out alone.  I think that’s what we fear most, unless we’re so sick that we’re glad it’s finally over.

Live your lives.  ‘Terminal’ doesn’t mean you’re done yet.

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