Dealing with a chronic illness : a lesson from my dog

If you ever ask me questions about my illness, or dealing with chronic pain… I will always tell you that the hardest part is “finding balance”
Living in bubble wrap & pain killers isn’t really all that fun. But having fun leads to more pain, and more downtime. So… how do you find that balance?! How do you protect yourself AND live your damn life?

I really struggle with this. Always asking myself which I preferred – a healthier (and longer) future, or a more enjoyable right now?

So, hold that thought.

~

Last week I took Zevon to his surgeon for a check up. He’d been limping a little extra the past few days, and it made me nervous. They did some new xrays and poked and prodded him. Afterwards, I was chatting with the surgeon. He was showing me again the incredible extent of the damage to Z’s bones when he was a puppy. At this point, his right knee is barely attached. His left hip is just a weird mess of bone fragments not at all in the shape of a hip.

scritchies

{{look at this teeny baby Z! gah, my heart!}}

His arthritis is so advanced in every joint. He’s a mess. So what now? The Dr. said to me “We could do up to 7 surgeries right now if we were set on fixing everything that is broken. But even then, he wouldn’t be fully fixed, he wouldn’t be fully comfortable. Also, having and recovering from those surgeries would last him the rest of his life! We could do that, or, we can let him enjoy his life. Treat the pain as it comes, prevent it when we can, and just let him be him. He doesn’t even know any differently, he’s always been this way”

I thought maybe he was talking about me.

I asked him for what specifically I should do, and he told me “if he shows sign of distress, rest him, love him, and know that he’ll have good days and bad days. Just look for signs of something more serious, and we’ll address those as they arise.”

Again, dude? you talkin’ to me?

It all sounded so simple.

Just make him as comfortable as possible, make him happy, give him love, and treat the issues as they come.

Duh. And so I realized… I just need to treat myself as I do Zevon. With care and caution, but not by putting a bubble around him. Not by jumping on him with surgeries and trying to cure everything. We both only have this one life. This short, flying-by-way-too-fast life. I don’t want to waste it being too careful, but I also don’t want to put myself in dangerous situations.

It’s not as hard of a balance as I’d once thought. I simply needed to be put in the situation of looking at it as treating someone else. A new application for the old golden rule.

Thanks little buddy. We’re in this together!

Zevon, eating Ben & Jerry's

Camping 2015!

I just got back from my favorite trip of the year! Camping! This year was just as wonderfully uneventful as always! As camping should be!

I took way fewer pictures this year, and decided to soak it in instead. But I took a few for you!

The Big Indian.  This 30 ft dude is a good friend of mine. I like to salute him every time we pass by.

Our trip wouldn’t be complete without visiting the Mt. Greylock summit. I got a homemade cantaloupe lemonade and took in the sights.

We had a couple very rainy moments, so we huddled in the cabin and played games, or piled into the car and drove around. We went to the old Hoosac Tunnel museum, which I haven’t been to in so many years! There’s an antique train car you can climb all around. But you can no longer go inside. This is the sad view of it.

The boys had their tent set up, but when the craziest winds OF ALL TIME came through, they had to abandon ship and come sleep in the cabin with Joel and I.  It was a fun slumber party!

It rained so hard that the boys took their showers outside instead of up at the bathrooms. It was pretty cute. I did take photos of that, but thought it best not to post those ;-)

We ate some of our usual epically delicious camping foods! spaghetti with garlic sauce, hamburgers, breakfast scrambles, fire-cooked veggies, pancakes, and HOBO PIES!

I tried the Field Roast burgers for the first time. Oh. My. Goodness. Officially the best vegan burger yet!

My first hobo pie creation – marzipan and dark chocolate chips in pie dough. I also made one with lemon pie filling! WHOA. The boys made combos of salted caramels, chocolate, apple pie filling, lemon pie filling, marzipan, cookie dough… cinnamon buns… yeah, you name it – it’ll cook in a hobo pie!

This year was one of the best for wildlife spotting! We saw 2 porcupine, 2 deer (one was a baby!), a beaver, snakes, salamanders, a TON of frogs/tadpoles, and I saw a crayfish in the pond! He was so little! The animals are always my favorite part!

This Beaver Bog always makes me wish I had a canoe there. I bet there are so many creatures to discover up in there! We didn’t make it to Tannery Falls this year, the weather just didn’t permit. But thats OK. There’s always next year!

Everything is so right with camping. It’s smelly, smoky, and dirty yet makes you feel like the cleanest, most stripped down version of yourself. Clean hair and makeup is irrelevant when you’re trudging through the mud and drinking strong coffee with equal parts grounds.

We’ve always timed our trip to coincide with the meteor showers (as we did since I was a child!), so we got lucky and the clouds parted for a spectacular night sky show.  At our park, there is a field in the center, with densely wooded sites around it in a circle. So plopping down in the center of the pitch black field, on the top of a mountain… you feel like you’re really just floating up there, among the stars yourself. You can see the milky way, and all the stars shooting across the sky. I didn’t even have any wishes to make. Life is good.

Returning home,  Adam and I exchanged emails praising camping and what a good time we had. We both expressed how fulfilling it all is, even for such a short trip. Just being together, and being free to be 100% ourselves is the best vacation you could have.

I hope he doesn’t mind, but here’s a little quote from his email that got me right in the feels…

Thank you for making sure we do this yearly because there’s something about you and I together that makes me feel so much more complete. Like I feel like me. I’m more confident. I have more fun. I’m more relaxed. I feel like everything is cool when we’re together. Like back to normal.

I couldn’t agree more. To have each other, AND our loves, AND nature, and still be comfortable and content. What else is there?!

The moral of the story is… I love camping. I hope you liked the few pictures I took, especially Drunk Doug the Porcupine. He was a real character!

Life Lately

This is just a little snapshot of my life lately… if you follow me on instagram, none of this is new. But hey, enjoy anyway, will you? :-)

My hair is purple! It’s been getting a lot of attention out and about, but I really like it. I’m trying to be extra nice to my hair, not washing it often, deep conditioning, all that. I don’t mind if I need to chop it all off sometime, but I do feel like it’s a waste to have cool colored hair if it looks dry and sad also!

I got new sneaks! Same Hokas again, just the next generation. I can’t say they, like, cure me or anything, but if you have knee problems – I highly suggest these sneakers. They are super supportive but very cushioned.

FOOD.

I’ve gotten back into juicing again now that the produce is so tasty. I try to have 1-2 juices a day, and the other meals are Starch-Solution (high carb, low fat)
This combo feels really good to me! Very satisfying and filling, while nutritionally abundant! I don’t know yet, but I also feel like it may result in a little weight loss (here’s hoping!)

Fresh fruit in the summertime is EVERYTHING. I wait all winter for this stuff!

White rice, romaine lettuce, topped with a black bean stew.

Rice tossed with steamed mixed veggies, and drizzled with sweet thai chili sauce.

Oh heck yes. My fave. Mashed potatoes with mixed veggies. Smothered in gravy! (the gravy is from a packet. The brand is Hain, and it’s unbelievable. fat-free, dairy & meat free, super low calorie, and SO TASTY)

Baked buffalo cauliflower bites. The batter is just flour & water and some lowry seasoning. Then rolled in spiced breadcrumbs. Baked. Tossed in buffalo sauce and baked a few minutes more.

Juice!  This is just me recycling a bottle. That’s my own juice. However – the new cold-pressed juices from Trader Joe’s are surprisingly very good!!

Big happenings!

Joel’s parents have successfully moved into the new house!! I cannot believe they are our neighbors! They are in the next town over. It is SUCH a relief and a joy to have them here. This is just one of those situations where it is good for everyone! I can’t wait to see how they settle in and how they like the area.

Just a picture of the new bed we had set up for their arrival. My Mom helped pick out the fixins and I think it looks so nice! 

DOGS!

Chai, enjoying a sunny day.

We took Z on his first hike since his surgery! I can’t even tell you how pleased, relieved, and overjoyed I am by his recovery. We’ve nearly lost this dog multiple times in his short life… and he just keeps on bouncing back!  He is walking and running better than ever! He was nearly paralyzed… and now RUNNING. What a trooper. We took it slow on the hike, but he was loving every sniffin’ second of it!

HEALTH.

This pretty much sums it up 100%.

Overall…

Life is good as always. Busy, for sure. Some majorly bummer things happening… like my parents losing their best doggie friend Sammy, my Mom’s health doing poorly, my body giving me a lot of grief… and you know – the major injustices of the world… lol, but all in all. We do what we can, and we might as well enjoy it! So yeah, life is good. I’m SUPER excited about camping soon (in a few weeks) and its getting into busy time at work which is always fun in its own way.

Well!

I hope you enjoyed my little update! I hope everyone is doing well and enjoying the summer!

 

The Great Closet Clean Out.

“But, when I am XXX lbs, this will fit and look SO cute…”

Such is my thought nearly every time I entered my closet. Clothes hanging up, clothes piled up, clothes in bags auspiciously marked with goal weights that I think I will be when they will fit. Talk about surrounding myself with unattainable goals and blatant failures. It was a combination of attempting to motivate myself, and self punishment. Some clothes… well, they used to fit. They fit for that couple month period when I was at my lowest weight. But most of them had no excuse. Most of them I bought without trying them on. I saw them on the hanger – imagined in my mind how they’d look and I brought them home.

The problem is that when I try them on in my mind I try them on someone else. Because even my mind doesn’t want to see these adorable clothes being wasted on my plumpy lumpy body.
I decided recently to get realistic about it. To be just brutal in my sorting through of these clothes. I had to start fresh. Anything that does not fit me RIGHT NOW. TODAY. Had to go.  No hanging it back up with a “in 10lbs though…..” caveat.

(Approximately 1/3 of what I am selling!)

I went nuts in there. I have sold (am still selling) over 110 items. I gave 3 full garbage bags away to friends. I donated 5 garbage bags to charity. I threw 3 garbage bags away.

(I’ve never seen so many empty hangers in my life!)

What a glorious purging.

But what I’d like to actually discuss is this….

Stop projecting your dreams and goals onto physical items.

I opened a bag marked “170” and I took out clothes I feel like I’ve never seen before. Keep in mind – I’ve NEVER been 170lbs. I’ve never been near 170lbs. How the hell would even know what would fit me at that weight?  And if it did, when would that even be? Would these clothes even be in style then!? What if it’s never?
If I got to 170lbs, and these clothes still didn’t fit – did I fail?!

Whoa.
Right?
Why was I putting so much into a bag of fabric and buttons?? I was letting all of these meaningless items decide how motivated I was, how committed I was, and how much a failure I have been. But that is not for my closet to decide! Don’t you judge me, adorable pencil skirt from 2009!

Getting rid of this stuff was really cathartic. Truly slate-clearing. I was making room in my closet, but I was making room inside of myself for new goals and dreams—ones that didn’t rely on fitting into something to be validated.

Don’t keep things around for “someday”. All you are doing is reminding yourself that THIS day is not as good as that mythical someday will be.
So, there you have it. Clearing out my closet not only has made my everyday vastly easier, it has also lifted a heavy burden that I didn’t really know that I had. I am free and open to new versions of the future, new goals and ambitions… and the joy of buying new things when new things are warranted. I’m pretty sure if I do ever hit 170lbs, I’d much rather buy shiny new things anyway!!

Labyrinth+Junk+Lady

(pretty sure this was where I was headed)

 

 

 

Farm Sanctuary Visit

Hi! This past weekend I visited Maple Farm Sanctuary in Mendon, Massachusetts.
A Farm Sanctuary is a place where abused, neglected, or saved-from-slaughter farm animals can live out their days safely. A few examples would be Cassie, the dairy cow who was being retired from dairy (meaning, sent to slaughter), she launched her 1,200lb body over a 6ft high fence to escape the slaughterhouse. Because she drew some attention for her stunt, she was spared and found a home at the sanctuary. (read her whole story HERE it’s very touching!)

Some young roosters were dumped at their doorstep in a box.

A sheep was being brutally tortured in someone’s backyard. She was saved by the police and brought to the sanctuary.

These are beautiful animals with wonderful personalities all their own. I was excited to tour such a loving place that takes in these creatures and lets them just LIVE. Un-abused.  Maple Farm Sanctuary runs entirely on donations and volunteers. Talk about running on passion alone!

Vegan, Animal Activist, or not – I encourage you to visit a local Farm Sanctuary near you! Its really fun to see animals doing their thing… being cute, demanding belly rubs, and living happily.

Here’s a few photos! I didn’t get to take many good clear shots, it was really raining and I didn’t want to sog up my camera!

Over 100 acres for cattle to roam freely!

Cassie, was SO beautiful. She gave me a good lick on the hand!

This mini horse tried to eat my sneaker!

Chance the pot-bellied pig!

Jonathan the 500lb pig! He was so massive, and so massively adorable!

Lots o llamas!

I have never touched anything so soft as this chicken! Like a clucking cloud!

The petting line starts here!

We met so many more animals than this, and there were still some that we didn’t get to meet. I definitely plan to go back another time on a sunny day!

Recent Eats

Of all the variations of the Vegan diet, I like the Starch Solution the most. I’m pretty sure I’ve done posts on it before… but the gist is – your body literally runs and thrives on carbs. Everyone knows that by now, I think! The Starch Solution is based off of the extensive research of the China Study – in which it is proven that societies that live off mainly starches (for example – “all the rice in China”!) are living longer, healthier, and less obese lives. If you’re interested at all in it, I highly recommend reading the China Study, or the Starch Solution books.  I have actually read them myself, but I seriously hate reading, so if you do too, you can get a remarkable amount of the same information by watching any talks by Dr. McDougall on YouTube.

Ok, the point of this post is not to educate you on the science of the Starch Solution, but just to show you a selection of meals I’ve been eating lately.

To fit into the rules of the starch solution, you basically just want your meals to be high-carb, low fat. Little to no processed foods (I have occasional breads/crackers, myself). The bulk of your intake should be starches, any and all veggies—especially greens, and some fruit.

Anyway, people ask me often about what I eat, and if you don’t follow me on Instagram, you may never know! :)
So here’s some examples – Not pictured are lots of salads. I like salads, and I feel that its important to get your greens in, but they are boring and I rarely snap photos of them before shoving them into my gobbler.

Pani Puri. This is an Indian appetizer that I’ve always been obsessed with when I go to Indian restaurants. I recently found the shells for sale in an Indian grocery store, so I make the filling and the sauce at home and just go to town on them! I’ll have about 20 as a meal. The filling is similar to samosa filling if you know what that is.  It’s mashed potatoes with chick peas, peas, cilantro, and assorted masala spices. The shells do have a small amount of oil, but it doesn’t break the bank for me.

With the abundance of leftover filling, I made some samosa burritos. This is just a tortilla, stuffed with the potato mixture, and I dipped it into the tamarind/mint sauce. So filling!

These are another exotic find I ran into at an Asian market. They are called Rice Cakes. They are just SUPER thick rice noodles, made of literally just rice & water.  Imagine a very chewy gnocchi, that’s how they taste.  I heat these until soft and then toss with kimchi and devour!

Fruit is still very important! Eat all the vibrant colors!

A tasty breakfast.  This is some fat-free seeds & grains bread, topped with Engine 2 hummus (Engine 2 is a brand you want to know if eating Starch Solution!), tomatoes, and sprouts.  Side o banana.

Potato topped potatoes!

This is some thinly sliced red bliss potatoes, baked to a crisp and then topped with potatoes I had mashed with mixed veggies.

One of my favorite meals!  Rice noodles topped with tofu, and assorted raw veggies. I will toss this with a low-fat peanut sauce (made with PB2!) or some rice wine vinegar.

Quinoa tossed with sauteed onions, mushrooms, tomatoes, and lemon herb seasoning. Side of celery for crunch!

Potatoes and gravy!! Who isn’t jealous of that!? I mash some mixed veggies into the taters for some brightness. The gravy is from a mix by the brand HAIN. It is fat free and vegan. If you ever see it – GET IT. Even if you’re not vegan or eating low-fat, you’ll like it.

Kale chips! Self explanatory :-)

Summer rolls. These are rice paper wrappers filled with rice noodles, assorted raw veggies, and pineapple chunks. Sometimes I do tofu as well.

An epic breakfast sandwich!  That same bread, with slices of tomato, tofu, and a patty of Gimme Lean sausage. Mmm I wish I had one right now!

Stuffed grape leaves, and a side of quinoa with onions and kalamata olives.  When I do add some fat in, its usually olives or avocado. I end up eating more fat when I go out to eat, because thats just how restaurants roll. So I try to keep it really low when I cook for myself. Hoping it all evens out!

My most typical foods, however, are not pictured here. Like I said, my staples are pretty boring and not picture worthy! But I’ll tell you that my most common meals are –
• oats w/berries & cinnamon. I’ll add maple syrup for sweetness. • salad w/any veggies I have on hand, and a low-fat dressing or hummus
• rice. Sometimes just plain (I love rice!), or I’ll top with soy sauce, salsa, beans, steamed veggies, duck sauce, kimchi.
• potatoes. Same thing, just plain (seasoned with herbs & spices) or covered in roasted veggies, a dressing, gravy, etc.

Ok, whew, I’m hungry now!

YOLO vs. LL&P

For most people, the way you eat is a reflection of how you want to live your life in general.

Do you scream out YOLO!! and eat anything and everything you want? I mean, you could die any day… should you eat what makes you happy in the moment with little regard to health?

Or do you want to Live Long & Prosper; eating for health, fitness, and longevity; in hopes of living to an old age?

How can we possibly decide?? I want a little bit of both!  It’s similar to my weight loss conundrum. Do I drop focus on the other things in my life to dedicate everything I have to losing weight and getting as fit as possible, in a sense – sacrifice a year or more of my life to achieve a body I want to live in for the rest of it?
Or, do I go the YOLO route, and just embrace being heavier and not care if it kills me earlier, because I’ll have enjoyed the time I had… as I am?

Do you see what I’m saying? This seems like an impossible decision. And though I agree that a balanced compromise is the ideal stance—for someone who is all-or-nothing like myself, that’s a near impossible task.

It is true that we only live once. It’s also true that we have a good chance of living a long, healthful life if we strive for it.  The problem is – what if we choose wrong? But maybe either option contains it’s own chance for regrets in those final moments.

Personally, I vacillate between these two principles. At times I am rigid and focused, prepared to sacrifice so much for my health and appearance. Other times, I feel content in my life and simply want to experience all the foods in whatever quantity pleases me!  The problem with going between the two is that it amplifies each one. When I am strict, I am extra extra strict because I have at times been less so.  When I am eating whatever I want, I eat MORE than I want, because of those times I was extra strict! It is such a psychological (and physiological!) trap.

I tend to feel happier on a more strict regimen, over all.  There are definitely some feelings of self-punishment, and exclusion from society. But not much, really. I do thrive on structure, so it allows me to feel more in control and safe. I stopped dieting so strictly because I simply wasn’t losing weight. So it seemed to be a bootyless treasure hunt. I see now, though, that maybe feeling like I was trying was a prize in itself. There is no pride in not getting anywhere because you’re not trying. Not getting anywhere whilst trying may be futile, but at least there’s a sense of pride in doing your best and not giving up.

So… hmm… having written it all out it seems I’ve answered my question about which I prefer.

Live Long & Prosper – it is! I’ll keep a little YOLOing for vacations and holidays. ;-)

 Anybody have a stance on this? Are you more YOLO, or more LL&P with your diet or fitness routine?

Survey Update : Nearly May!

Making: Cards! CKC Manchester (scrapbooking convention) was last weekend and Melissa and I had an awesome time as always!  We take classes and shop our wallets off. All the new items and ideas really make me flood with inspiration. So I’m anxious to get in my craft room and make more stuff!

Cooking: I’ve been a little too into peanut sauce lately. I never ever liked peanut sauce, but since I discovered that I do LOVE my own homemade peanut sauce… it’s dangerous. So… summer rolls with peanut sauce, tofu with peanut sauce, rice noodles with veggies and…. peanut sauce. It’s so bad, and I’m definitely cutting the cord on that, cause ain’t nobody need THAT much fat. (its so GOOD THOUGH)

(I take this vibrant bowl of noodles and greens… and smother the crap out of it with peanut sauce)

Drinking: I’ve had two Green Tea Frappuccinos w/coconut milk from Starbuck’s recently, and they are SO good. Again, not the healthiest, so I don’t want to  make them a thing. But on a hot day (if we ever have a hot day), one would really hit the spot!

(THIS just opened up near my house. Talk about dangerous.)

Wanting: To get my hair re-dyed. I do have an appt, but its still like 2 weeks away! So now my hair is just in that ashy sad faded phase.

Looking: Pretty decent! I organized my makeup table last weekend, and when I do that (much like my crafty stuff) it makes me feel very inspired to play with it all! I watch makeup tutorials and all that, and still have close to zero skills.  But its fun to try!

Playing: Can’t Deny My Love (and the other 2 new singles) from Brandon Flowers. ON  LOOP. Especially in my kitchen. While I shake my booty uncontrollably.

Wishing: For true Spring weather to arrive. It’s nearly May, and its still freezing cold and cloudy!

Enjoying: My Gwynnie Bee subscription! It’s been really fun trying new pieces and I’ve even bought a couple!

This is one of my fave tops I got from Gwynnie Bee. I’m wearing it today!

Waiting: To close on a house! We’re buying a house for Joel’s parents, and we had the inspection yesterday and all is progressing perfectly! Just a few weeks now and we should be done, closed, and ready for them to arrive!

Liking: That Game of Thrones is back on. It’s not my all time favorite show, but since Justified just ended (forever, BOO), and Vikings just concluded the season… its really nice to have something else that Joel & I both watch together.

Wondering: why I didn’t make a smoothie for breakfast this morning. I really wanted one, and I had the ingredients and the time. Yet, I didn’t!  What a mistake!

Loving: That Zevon is all healed up!!!!!!! I am so soooooo grateful to have my little buddy back to healthy and happy. The miracle of medical science! Amazing.

Hoping: I think of some more blog posts for y’all! I miss this.

Marveling: I’m gonna say Zevon again for this one! It honestly blows my mind how much a body can go through and still come back to good.

Needing: To get more strict about my diet. My schedule was just crazy the past 2 weeks and I let my diet get sloppy a bit. It’s Ok… but I’m over it and ready to crack down a little.

Smelling: My own coffee breath. Cinnamon Hazelnut Iced! Yummy in the tummy, a little stank in the mouth.

Wearing: Ha! That same shirt in the picture above! But purple jeans with, and my usual Hoka sneaks.

Following: Still pretty hooked on YouTube. Haven’t made any recent discoveries worth mentioning, but I tell you, it’s a trap! :-)

Noticing: So many split ends in my hair. Its like, once you see one, you can’t stop seeing them!

Giggling: Over sending a short video to Adam of me lipsynching to Bootylicious in the car this morning. It had to be done.

Knowing: That I have to poop. But I don’t feel like getting up right now. #livingontheedge

Thinking: About how I really do have to poop. Damnit, poop. YOU CAN WAIT.

Feeling: So much sympathy and fear for the people in Nepal. What a beautiful place, rich in history… just in crumbles. So many tragic deaths.  Mother nature is so incredibly cruel sometimes.

Ok, thats it for now!  It felt good to think about whats going on RIGHT now!

What are you wearing, thinking, or giggling over today?

It’s Official! EDS diagnosis

I have known (assumed) for 3 years now that I have a genetic disease called Ehler’s Danlos Syndrome. But a few weeks ago I went into the Brigham & Women’s Adult Genetics Center in Boston to meet with some Genetic Specialists to get my official diagnosis.  The appointment was easy, and mostly painless. They took a long verbal and written account of my personal and family medical history followed by a physical exam. I still have an echocardiogram looming, as problems with the heart valves are very prevalent with EDS. I’ll be having that, along with a bone density test done in the next few weeks.

The doctors were very kind and delicate in telling me that I do indeed have EDS. I imagine for people going in blind, being told you have a debilitating hereditary disease with no cure or treatment is devastating.

Luckily, I already knew. And the thing with EDS is – you’re born with it. You’ve lived with the pain and its very apparent that it will be there your whole life.  There was no surprise.  Still… having it be official does feel different somehow. Though I was 99% sure I had it, moving that number to an absolute 100% does change things slightly.  I feel like I am being forced to actually acknowledge that nothing can make it better. And also forced to realize that I can’t ignore it. I do need to protect my body more than I have been.

What most people consider to be one of the serious struggles of EDS is that it is an “invisible illness”. Unless you’re really limping that day, no one can look at you and know there is something wrong with you. It’s hard to be suffering silently. However, for the most part, I think I prefer it. I’m not sure I want everyone to know that things are hard for me. I prefer to be a mostly positive force in the lives of those around me. The hard part, personally, is not feeling helpful. I can’t really help friends move anymore. I can’t lift heavy packages into the house or pile a ton of groceries on my arm. I can’t shop for a long time, or walk a few blocks in the city with my friends.  I have to be a burden on other people,  which is the last thing I’d ever want!

If you clicked on the link to the EDS foundation above, then you likely read about what it is, and the common symptoms. If you didn’t, the basic gist is that EDS is a connective tissue disorder. Connective tissues being the glue that literally holds your body together – I’m missing that glue! Due to this, my joints are chronically loose and hypermobile. What that means for me specifically is that on a daily basis my joints are subluxating and dislocating. Hips, shoulders, elbows, jaw, knees, toes, fingers, ribs – everything – are constantly coming out of their sockets or just wobbling around in there! Sometimes its very painful, sometimes they just feel loose and I can wiggle them back into place.

Because of the joint problems, this causes severe arthritis, as well as chronic muscle spasms and tears. I have over 60 small tears in my rotator cuff and shoulder muscles! Swiss cheesey! There are a myriad other symptoms like my very poor and degenerating eye sight, dental problems, skin and healing issues, possible heart problems, and all kinds of other things. That connective tissue business? Yeah, it’s EVERYWHERE in the body!

As for the future – its just more of the same.  Treatment for EDS is simply just managing the pain.  There are no medications that can help with the connective tissues. There will be joint replacement surgeries, for sure, in the future. But I’m going to hold out as long as possible for those. There are splints for some joints that help (I have a few finger ones, they look like rings, so thats cute!), and canes and wheelchairs are always an option.

I’m making this post because a few people were very curious about the condition after I received my diagnosis, and in person, my answers are very minimal. Not because I am uncomfortable talking about it… just that I don’t want them to feel uncomfortable about it.

Anyway, if you’d like to learn more, on an easier & more personal level, here’s some really great videos from other people with EDS.

Bunny Hopkins EDS FAQ : https://www.youtube.com/watch?v=fgMg4nr8q0Y

Rei Haycraft : https://www.youtube.com/watch?v=8Q4juCB2GeU

Kraigisonfire : https://www.youtube.com/watch?v=6Sdn9Xs9yJw

Cheyenne Love : https://www.youtube.com/watch?v=GlO6U4rScmo

Kristin Means : https://www.youtube.com/watch?v=9aVDHi0Rsec&list=PLbWHn0hRBhlSyYSeNGhy0i9faz5jtivmj 

 

Well. Awesome.

I just clicked PUBLISH on a SUPER long post. And it got lost.

Thanks WordPress, you dick!

I love you all, but I’m not typing it up again.  But I’d like to say HI!  I’m still here, and I’m feeling motivated lately. Ready for Spring, and ready to start actively trying to lose weight again.

Still formulating a plan.

Wow. Losing a whole post just sucks! Sorry!