middle of the night chronic spoonie lurker jackpot

Pix click out to other sites and sources. Some amusingly have nothing to do with what we're talking about.

I was very ill for about a year before I finally felt desperate enough to seek out medical help. I'd lost 75 pounds and hurt profusely all over, and felt like my spine was being microwaved, as if the spinal cord must have a fever. My first doctor was an ancient country doctor on the brink of retirement. My bloodwork inspired him to let me know I would be in a nursing home by 40, and that there was nothing that could be done. Then he prescribed the biggest jar of aspirin I ever saw in my life and told me to take it every day. About a couple of weeks into the aspirin I went through a full week of hallucinating and 'visions' and should probably have been in a hospital. I never went back to that doctor, and stopped the aspirin. I was in my mid 20s.

A few months after that I dragged myself into a city clinic and saw a real rheumatologist. He asked why I was there. I told him I thought I might have lupus. He asked me ten questions, and I said yes to all ten, including losing my hair, which was noticeable to my family. Without ordering a single blood test, he laughed and told me I don't look sick, and said I was skipping down a rosy little path to a psychiatric illness. I dragged back out to my car and sat there crying for almost an hour. Note- several years later, a doctor sent me back to that same rheumatologist who was now in an even bigger clinic, and after touching my rock hard shoulders exclaimed that I had the worst fibromayalgia he'd ever seen and demanded to know why I wasn't being treated for it.

I was too devastated to try again for another year, until I finally couldn't take it any more. It was a horrible time for single parents on medicaid, no clinic I called would take me. I finally drove back to the city to a clinic I hadn't called yet and dragged from office to office asking if someone could please see me. Finally, on the third floor, one doctor said yes and saw me that day.

From Fibromyalgia- University of Maryland Medical Center
"Fibromyalgia can be difficult to diagnose. It can take 5 years for the average person with the condition to finally get a diagnosis. As many as three out of every four people with fibromyalgia remain undiagnosed."
I was fast tracked to rheum and diagnosed within a week.

From Do I have lupus or fibromyalgia?- Fibromyalgia Information Foundation
"As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically."
I was also dx'd simultaneously and treated immediately for lupus based on positive ANA and high SEDs which refused to come down for several years even on meds. Medicaid wasn't paying for a new drug called Ansaid, so my doctor kept me on samples for five months. I credit him with saving my life. He also dx'd me with Hashimoto's (autoimmune thyroid) about a year later, based on radioactive iodine uptake.

My SEDs hovered between 75 and 100 for several years. I felt like my bones had been crushed and nothing touched the pain, but the Ansaid kept me functioning enough to work on my college degree.

In the years since, photosensitivity called polymorphic light eruption (PLE) was confirmed by a dermatologist, a liver condition called NASH was confirmed by an endocrinologist, and I underwent heart surgery at 38 to correct a rhythm problem that started in high school after I had measles, which I just lived with until it became unbearable. During my worst year I went through nerve fail which caused such severe dry eye (I still make only 3% moisture in one eye, confirmed by an opthamolagist) and dry mouth that I developed cavities all over my mouth. My dentist was thrilled when the moisture finally came back on, and I have had only one cavity in the years since.

I'm also positive for lyme, esptein-barr, bartonella, and CMV, plus I had the measles in high school. What doesn't kill you doesn't always make you stronger. Sometimes it makes you a puny sickie.

Why am I saying all this? Because I still have doctors asking Are you sure it's lupus? (Yeah, they're asking me.) I've never been hospitalized and managed to fake my way through 15 months on a desk job (my last job after years of more laborious jobs) without missing a day before I finally fell apart because when I was growing up, we never went to doctors. I grew up on a farm working like a dog since I was very young, pushing animals 4-8 times my size around regularly, and using my hands so hard that I'd developed carpal tunnel by the time I was in high school (recently confirmed as 'severe' by a neurologist). Then I went on to survive being thrown out of a car crash without any pain meds at all. After living with nasty trigeminal pain from damage for years, a neurologist finally dx'd me with trigeminal neuralgia.

I've come through a whole lot of thick and thin, have been through several epic health crashes, but what started turning it all around was 1- finally being dx'd with diabetes and changing my diet, and 2- slowly weaning off the handfuls of meds that kept me 'drunk' for years. AFTER THESE TWO THINGS, my liver tests finally went back into a normal range. I had elevated liver enzymes for two decades until I changed those two things. One year my liver was so sick that my doctor wanted to test me for autoimmune liver disease, but I felt too rotten to go through a long needle penetration. I still get symptoms once in awhile, so maybe I do, but it sucks so I avoid flaring it as much as possible.

Ever since I made these changes, which have taken several years (four years since the diet changes, seven years since I first started weaning off meds one by one under doctor supervision), my health has slowly but steadily improved. I have come back from being convinced death was close (using a cane and sometimes a transport chair and daily advair just to be able to breathe, and needing help dressing and bathing), to living a pretty normal life in my own home now. I still have mini flares, I still get SED spikes once in awhile, but for the most part nearly everything in my body is improving as I age after years of immobility and misery.

I still look around for tips and advice from other spoonies on rough weeks, and what I call my rough weeks are still spectacularly rough compared to non-spoonies, but to me now, they're a vast improvement over rough years.

I wrote this down in one place to give other people hope. There really is hope.

If you are a very sick and puny person and are still drinking soda pop and smoking cigarettes, you cannot get better until you stop that.

If you are a fatigued scatterbrain who enjoys a little too much pasta and dessert, you cannot get more energy until you stop that.

If you are overworked and eating salads and and torturing yourself to 'be healthy', you cannot feel healthy until you stop that. Get some real rest and more protein in your diet.

If you are buying extra makeup and putting more chemicals in your hair trying not to look bad, stop that and take a step back- do a real self assessment, prioritize some goals, make a PLAN, and spend the next 2-5 years implementing. It took you years to go to pot, it'll take a few years to come back from that.

I am a workaholic. I'm also an alcoholic (20 years dry now), a very heavy smoker (3 packs a day, 25 years off now), a codeine-benzo-caffeine addict (never cold turkey off benzos, guys, it sucks and it's dangerous, and guess how I know that), a chocoholic (a severe nut allergy popping up cures that real quick, read a few labels and laugh with me about how most of the chocolate in the world is processed in facilities also processing nuts), a sweets junkie (I'm an artist with decadent baking), ok you get the point. All that stuff piles up. And once you've overloaded, it takes years to undo damage to your immune system, your liver and kidneys, your eyes, even your brain. You can't take ginseng and improve your brain power and still do all this stuff.

There are people out there who do everything right and don't get better. Hugs to you guys, I've watched a few friends go down and I know it's really hard. There are other people out there who do everything wrong and live long lives without ever getting sick or cancer. High five on you guys, good on your magic DNA. Trade me bodies sometime. And don't gloat or feel better than other people because we all know it was the luck of the draw, and it's not like you got to pick your body before you were born.

It's not your fault. Yes, we have science and medicine now, yes, you know better than to be ingesting things and not exercising and whatnot, but just because we know this stuff doesn't mean it's your fault. 300 years ago, people died all the time and no one knew why (unless it was murder or some crazy accident). Now we know why, and basically it really is the luck of the draw- you are stuck with the DNA you were born with. Some people are prone to cancers, some prone to diabetes, some prone to autoimmune problems, whatever. You were born that way.

True story. My husband's granny lived to 102 with full blown diabetes. She avoided stuff that spiked her blood sugar. Her daughter (my husband's mother) eats bags of candy and to this day in her 80s remains completely free of diabetes. Eating sugar doesn't cause diabetes, but it will make you very sick if you have diabetes. My husband has been hovering on the brink of 'pre-diabetes' (that's such a joke, just call it what it is) for years because he's a hard worker and manages to keep his fasting glucose low enough to keep the doctor hesitating, even though he carb loads like crazy sometimes. When he does that, his heart races, and we know there is some damage going on at the cellular level, but he thinks he can get away with cheating. He's never yet been treated and he doesn't count carbs, he just works really hard.

On the other hand, I come from everyone going diabetic on my mom's side, lots of strokes and vascular disease kind of stuff, and she didn't make it to 70. I watched diabetes destroy her. She suddenly started wasting away and I thought she had cancer. She said she never felt better in her life. I don't know if that was true, because I also know her feet started going numb, and it took her months to recover properly after a simple gall bladder surgery.

I was going down way faster than my mom. Way faster. Now I'm doing much better at this age than she did. Way better.

I just want to let you guys know there really is hope, but you are the one who has to decide whether to make it possible. Whatever your diagnosis, whether they're missing something or not, even if it feels dire, you can make decisions that change how you feel down the road. Where do you want to be in five years? Make a list. Fewer headaches, maybe. Heartburn gone for good. Bladder control. Less brain fog. A little more energy. You might surprise yourself if you make a decision and stick to it. Just 5 years ago I was using a motor cart to buy groceries. Now I trot all over Walmart.

Little steps over several years add up to really big changes.

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.