I'm going to blog during EDS Awareness Month. Im sure not people are writing about their pain, hospital stays, surgeries and that's cool. My biggest complaints about what makes it so difficult to live with Ehlers Danlos Syndrome isn't really all about the physical symptoms.
Before anything else... I apologize that these will be long... i feel like I've hardly had anyone to talk to for months. I haven't seen most of my "friends" in a year or more. I really need someone to talk to, even though I am not up for long phone calls or going to lunch. So this is all I've got.
If you consider yourself a friend, please take some time to read these three blogs. I really don't ask much of folks - I never ask for donations to a charity, I don't sell any direct marketing crap, and I rarely bother anyone with my issues for more than a few minutes .... I hardly get to see many of you, ever.
I do still very much need support from friends, and being in too much pain to talk on the phone doesn't mean I don't miss having someone to listen and to be a friend, so I'd REALLY love some feedback on how I deal with the three hardest parts about life with EDS. This is the first of the series of THREE blogs.
Part One; The people closest to me are the ones making my life SO. MUCH. HARDER. than it should be & I don't know how to change it.
One would think that the people who spend the most time around me see firsthand how sick I legitimately am, and that those people would, as a result, try to make my life easier. And in some ways, they do, they definitely do.
Justin busts his ass, working nonstop, often around the clock, and despite the fact that I'm pretty terrible with money, he rarely has complained about it. He deserves an award for his undeniable work ethic and I would hope that he knows that the only reason I can't stand how much he works is only because I can't stand that he's NEVER around. I'm thrilled that he likes what he's doing now, and that he can make a good living doing it. I'm thrilled that he isn't lazy because we'd really be fucked if he was.
In the same regard, my mom also does so much - for me, for my son, and for Justin too. First of all, the three of us live here completely for free. While my dad was the one that worked most of my life, my mom still works four or five days most weeks, not to mention pays all the bills, keeps several of her sons from self destructing on the regular, and she cares for my father who (although he is completely not) behaves like an invalid. I mean, seriously, she can be doing seventy things for seventeen people AFTER having cleaned a house for eight hours, and he's all "Hey, when's dinner going to be ready, I'm starving...." No joke, and I don't know how she tolerates it.
Beyond letting us live here (because in reality, if we HAD to afford a place for the three of us, we would be in a REALLY sad situation. As it is, it doesn't feel like we have much, and that's MAINLY because of how fucking expensive it is to be disabled. Justin does fix my parents cars, we buy groceries, he fixes stuff around the house and buys things the household needs, replaces things that break, etc. We aren't jut grifters, I mean, we do try to contribute, but we don't pay a specific rent and utilities.
On top of that, over the years, my mother has allowed us to put thousands of dollars worth of crap on her charge cards. Justin has inexplicably terrible credit and mine, well, I had to leave my house to be foreclosed and haven't been able to have a job for going on seven years. So big purchases have always fallen to my mom, with the perfect credit, who has allowed us to use her killer credit score to do things like renovating Kaedin's room and building his loft bed. Nearly all the vet bills over the years for our cats, dogs and rabbits, have gone on the Carecredit account that I couldn't qualify for without her.
Hell, our entire trip to Hawaii occurred RIGHT when he got laid off, and we borrowed nearly three grand so we didn't have to cancel that trip.
Beyond that, there have been countless vehicle rentals, short term loans here and there when it was too far from payday and I had a doctors copay, or prescriptions to pick up... even my entire Victoria secret account in in her name. And while Justin makes a ton of payments, there have been PLENTY she's made, and even more that we wouldn't have paid on time had she not been on top of all the due dates.
I'm sick, have a horrible short term memory, and I've always been bad with managing cash, and Justin is no better. It always seems like our problem is just constantly needing more than we have ...but I'm positive that he and I are both terrible suckers for a good sale, that my Lego collection has a TON to do with our being broke, and that we are equally disorganized and stressed out and we take it out on our bank account. If it wasn't for my moms credit and her staying on top of us, we'd be fucked. I mean, like I never would have gotten a career going in the first place because she already cleaned up most of my credit once BEFORE. It really is not my goal to make her more stressed and to have a ton of revolving credit tied to her name, but I also don't know how we'd survive without her help.
There are many other things... She does do ALL of our laundry (even if we've repeatedly insisted that we can do it ourselves. She doesn't believe in once a month laundry binges, and so what goes in the hampers (Or in Justin and Kaedin's case, what lands on the floor) - she washes, folds, and then drives us crazy piling up clean clothes on every available surface endlessly harassing us about putting them away somewhere. It's a vicious cycle.
And although we mostly buy our own groceries, and my mom does cook far less than most of my life - she does make or order food with Kaedin in mind, probably five nights a week. A few times a week she makes enough or brings home leftovers that she offers to me or Justin or that she plans for us to eat in the first place. She knows what both of us do and don't eat, and keeps us in mind when she's making food, and even when she orders out, about half the time, her leftovers are left for me or the kid.
And there's no denying that she has taken over the care of nearly all the animals. Despite the fact that I've insisted that the hedgehog, Kaedin's hermit crabs, Rosie the disabled bunny I'm providing hospice care for, AND the new kitten are **NOT HER PROBLEMS** - she still MAKES THEM her problem, checking on them all, and feeding, watering, giving meds to, etc etc etc. She's the only one up early, so she feeds all six cats breakfast. She also puts Yogi out, takes Justins dog (Benji) out, and then walks Kai most mornings too. And feeds them. And then if Kaedin doesn't move quickly enough, she's giving them all dinner at 6pm too.
Last but not at all least, she manages ALL the cat litter boxes for the five cats (all five of whom Justin played a part in bringing into the house.. ) Not to mention the fact that she *completely* took over the feeding and cleaning for my (now 6) rabbits and (4) chinchillas when I was pregnant and then in and out of the hospital so sick... she cleans all those cages every week by herself.
But this is what brings me to my point. With all that my mom does for our family...you would think that Justin would be very appreciative and hard at work to keep from butting heads with her... wouldn't you?
But no. Nope, it's bordering on World War Three around here at all times. Don't get me wrong either... I'm not blaming Justin soley. There's definitely a complicated dynamic at play in this house. My mom and I fight like cats and dogs too...it's definitely NOT just him.
You would think that these two people, my mom and my husband who SEE how crappy I feel all the time, would come together in some way, right? After all, these are the two people who KNEW ME, and SAW ME, when I was living life and enjoying myself and working hard. So they know, first hand, how little I go out and do anything. They both realize that I hardly have any friends outside of the Facebook variety, and both of them would probably agree that I shouldn't be writing this blog and both would probably rather I just deleted my Facebook all together...but again, remember... that's my whole point here.
How can the two people, who see me in the same clothes for days on end, barely moving from one spot... how can these people be at constant odds with one another, ALWAYS putting me in the middle?
If it isn't my mom going on and on and on about some LOOK Justin gave her, or some smartass comment he made or about how he left something unlocked, or clothes on the floor, or crap on top of the clothes hamper, or boxes on the landing, etc etc etc etc. And on the rare occasion that SHE isn't fuming mad about somethin Justin did, didn't do, or said.... then HE is talking my ear off about whatever SHE had the nerve to say to HIM.
I swear to god, ninety percent of it is ridiculous communication issues. Justin can't stand the way most of my family communicates. That's no secret. He's blown up at me for the **exact same type of things** that she says, and I think, most of the time, that he's being overly sensitive and weird about the way he handles NORMAL human conversations.
For example... if my mom wants her brakes done, and she wants Justin to do them, she may bump into him getting ready for work in the morning and say something like "Are you working today?"
Now, IMMEDIATELY, with that one question, Justin is up in arms. Seriously. Like with that one question, he becomes all combative and pissy and irritated. The eye rolling begins.
Now, she's probably asking if he's working both to make small talk, and to know if he's in a big hurry before she starts a longer conversation, but he IMMEDIATELY wants her to get to the point. He literally wants her to walk into the room, see hi and say "Can you fix my brakes on Saturday?" At least, that's what it certainly seems like he wants...mostly I think he wishes that no one would talk to him unless he talks to them. That's how it feels anyway. She's not wrong at all- there's not a damn thing that is safe to ask him. He gets abrasive just about any time anyone tries to talk to him, ESPECIALLY if you're asking him questions. It really feels like he's on the autism spectrum when this starts, because he REALLY gets uncomfortable with what seems like the most BASIC of small talk.
But I digress... She'll ask if he's getting ready for work, he'll get all pissed off and shrug with his back to her and mumble "yeah." -or something equally short and abrasive. (Now in her mind, she'll be all "wtf is with his attitude, all I asked is weather or not he is getting ready for work." And she will IMMEDIATELY save this interaction to tell me ALL ABOUT, the ..second he leaves the house weather it involves WAKING ME UP to tell me or not. And I'll get her version, high definition DETAIL about 'WHAT A JERK MY HUSBAND IS TO HER'. I could play this conversation back on a loop because this happens at least twice a week.)
Anyway, so she'll ask. Hell mumble a short, shitty answer, so she'll try to cut to the chase and say something like;
like "Uh...okay... So I was wondering if you guys are going to be around on Saturday...."
By question number two, Justin is like, seething mad. Again... CANT SHE JUST GET TO THE POINT?! (Again, I feel like there's not a damn thing wrong about asking if someone will be around before asking a favor of them, but, I digress.)
It's generally at this point where he puts up a wall and decides that he's going to be as disagreeable and miserable as possible to anything else that she says. Now, if she starts to talk about her work schedule, or something about Kaedin or about how her sister called forty two times that morning, he cools off. He's fine. I've heard multiple conversations in the morning go on, perfectly pleasantly, some of them even going on for so long that he's been made late to work (moreso back when he had an office desk job, not really anymore)- but she would chat about my brothers, her sister, the people she cleans for, and he would casually chat back. But my god, as soon as you ask him a question, the tides turn.
So anyways, when Justin gets all shitty and mumbley - he really acts like a giant prick. Hell say and do things SPECIFICALLY passive aggressively, many of which he'll do JUST to bug my mother, and I know this, because he's done the EXACT same to me. He gets all snarky and sarcastic, short tempered, he'll snap at you, mumble, talk with his back to you, or walk out of the room right in the middle of the conversation. I don't know why he is like that, because I've only ever seen him do it to me and my mom.
He seems to have INFINITE patience for anyone in his own family (except his sister) and when it comes to his friends or work people... forget it. He'll chat with them on the phone like a teenaged girl and their bff. He's always been a little more on the quiet side around people that didn't know him well, like my friends or at the rescue around the volunteers... but Justin has always been a pretty damn social person who has no problem getting lost in conversation. Like my brother Wayne will stop by, and Justin can talk to him for hours.
You would think that these two, who see me in pain all the time...these two people who know I get horrible sleep, not enough of it, and that other times, I'm COMPLETELY helplessly exhausted and can't do anything BUT SLEEP... often for days on end... well, one would think that they'd both make some kind of effort to NOT constantly get into these little bullshit spats about nothing, and then INVOLVE ME.
Like honest to god... it's always annoyed me that my mom has a habit of waking me up, or rather, talking to me weather I'm awake or not, by coming to my door or into my bedroom, and giving me a rundown on who's been fed, what time it is, weather or not anyone needed to be walked, fed, etc. She'll also give me HER schedule for the day, followed by anything she expects or at least hopes, that I'll do that day. And then she finishes it with things like "Kai hasn't been out, Kaedin needs lunch, and the hedgehog needed water."
Sigh. Yes, it annoys the hell out of me when my mom gives me to-do lists. Especially when they are things that I've always made perfectly clear that I'd like to do, or that I hope to get done. I can't stand the house being a mess either, but considering how infrequently I feel well enough to do much of anything... her endless to-do notes and her "morning meetings" are aggravating. No, I don't like having her tell me that the clothes on the couch that she washed and folded have needed to be put away for two weeks straight. But I also didn't ask her to wash them, or to put them on the couch. She could have JUST AS EASILY stuck them in my bedroom somewhere. Or not have washed them at all. But when she does this and Justin is around, it makes him five times more angry and annoyed than it makes me. And she's not even usually talking to him.
Yes, I wish that on days where I have barely opened my eyes, that she wouldn't parade in and out fourteen times, even if a few of those times were to feed kai, take him out on a walk, to remind me that the cell phone bill is due and that the credit card needs to be paid by 5 or we'll get hit with a late fee... but the reality is, I'm generally NOT REALLY AWAKE and I don't remember anything she's said ten minutes later. With the frequency of things I've forgotten, you'ld think she wouldn't bother. The number of times she's left notes that I still haven't even SEEN by the time she gets HOME form work is just as bad.
Despite seeing me, unable to move, unable to sleep, in constant pain, barely eating anything for days on end... it VERY MUCH FEELS like she doesn't believe that I'm sick at all, because the way she speaks to me, it very much comes across that she thinks Im just lazy and why can't I just do the things that she wants me to do. She doesn't seem to understand that if I scraped together the energy to make Kaedin peanut butter and jelly... I then didn't feel well enough to MOVE for the next eight hours. So yeah, sorry the clothes still aren't put away, but that didn't make the short list for today. Or this week.
The other huge issue with my mom is that she takes on EVERYTHING. Like, everything weather or not she needs to. She feels the need to inform me of what time Kaedin got up, weather or not he had a drink, weather or not he ate, what it was, and when, weather he's dressed and what he's doing currently. If she comes home from being somewhere... she expects the SAME RUNDOWN. On every living thing in the house. Did Rosie get her meds? Did Justin make the capital one payment before five? What did Kaedin eat for lunch? And when? (And the WORST PART of this insane nonstop endless questioning is that she JUDGES US NONSTOP, HORRIBLY for whatever the answer is.)
-Kaedin didn't eat lunch until four thirty? Eye roll.
-Kaedin never had breakfast? Why not? Sigh, huff.
-If you don't get that payment in before FIVE there's going to be a late fee. (Mind you, I was SLEEPING/half asleep and didn't hear the first reminder that morning!!)
And worse... most of the time I CANT REMEMBER half the things she wants to know. How many times was Kai out? Did he pee AND POOP? When was the last time he was out? Has he had water? (His bowl is empty, she says, sighing as she fills it). Everything she says to us is tinged with the attitude of "you people never do ANYTHING RIGHT..." and she passes judgement on the way we raise Kaedin NONSTOP.
It doesn't matter if he hasn't been on the iPad all day and we are doing reading words... "Doesn't he spend enough time not that thing?" She'll ask what he had for lunch... chicken nuggets and dip, and yogurt. "chicken, really? He had children for dinner last night." If he's eating a snack, it doesn't matter how many meals he's had, it's the wrong snack, the wrong amount and the wrong time of day.
She can't stand that Kaedin goes to bed near midnight even though it's just what naturally seems to work for us. It doesn't matter that even when Justin and I ARENT HOME, he still ends up in bed close to midnight. It's still wrong when WE DO IT. And he's only up that late for them because it's what we've gotten him used to.
It very much feels like my parents (especially my mother, but my dad is just as judgmental, bossy and nasty about it)- believes that Justin and I are COMPLETELY incompetent. Despite the fact that most of her own children have not turned out too well, my mother has some hard and fast rules about how children are supposed to be raised and because we don't agree and we don't follow those rules... she will NEVER EVER EVER let us forget about it.
Similarly... Justin is a huge asshole to my mother about certain things. Like the fact that my mom started warming up Kaedin's milk when he was little and now he likes it and asks for it that way. He LOATHES that Kaedin likes warm milk,especially at bed... like, he gets, unrationally upset about it. Similarly, Justin can't STAND the use of sippy cups. No matter how many times I've pointed out that I used silly cups well into my childhood, because it minimizes spills around the house, Justin HATES THEM WITH A PASSION for no reason that he can possibly explain, and this must be my mothers fault... so when she complains that she can't if she any of Kaedin's cups (a daily complaint)- he snarks back that Kaedin is six and shouldn't be using them anyway. "He should learn how to drink out of a real cup," he says. Never mind that Kaedin CAN drink out of any cup, just fine thanks. When I point out that I don't want drinks spilled, his reply is that ALL DRINKS SHOULD BE HAD ONLY AROUND THE TABLE THEN. This from the man who carries MULTIPLE quarts of iced tea EVERYWHERE HE GOES and drinks multiple quarts daily. But how DARE Kaedin do it.
(Also, Justin leaves said tea containers everywhere. There's at least ten in our bedroom and my car, and he rarely puts them in the recycling bin....yet another complaint I hear from my mother that he makes ZERO EFFORT to fix. )
There are other f*d up things that I SWEAR Justin does JUST TO PISS OFF MY MOTHER. Like his habit of dropping all his shit on top of the hamper outside our bedroom door and then leaving it there. She can't take the wash out, and half the time, I can't put laundry in (usually his, that he leave son the floor in the bathroom and bedroom.. I get that he's busy and works a lot but his household cleanliness / helpfulness IS abysmal)... so the more it gets mentioned, the more I swear to GOD, he's doing it just to piss us both of. I've found mail, packages, envelopes, shopping bags full for, Walmart or Wawa (including bags of his damn bottles of tea!!!!)- I've also found a PRINTER, his phone, other wires and work tools... I mean, you name it. If it's in his hands when he gets home, it goes on/in the hamper. And he NEVER EVER MOVES THE SHIT. And god forbid my mom say something ...because he snaps "No one asked you to do the laundry. Just leave it alone." But she just moves the stuff, he gets mad, and it goes in a circle.
Similarly, he brings home bags form stores, puts them down in the hallway or kitchen and doesn't touch them again. Now, the MOMENT someone gets sick of looking at the bags of food or other items and actually puts them away, the moment he notices, I hear "ARE YOU KIDDING ME!? Nothing is safe from your mother. I JUST put those canned tomatoes/boxes of toothpaste/piles of papers down yesterday/last night / two months ago and she's got the bags gone, and I can't find my stuff. If I put it away, he grumbles and asks where it is. If
SHE moved it, I swear to god he puts a strike in some notebook and saves up his sass for the next time she dares to ask him a question. Sigh.
Listen... I am **eternally grateful for*** (and very much in love with) my husband. For more than twenty years, he's been the person above anyone else, who has always been there for me. Long before we became a couple and had a kid (over a seven day period, but that's a story for another day, for the few who don't know it.)- Justin has always been my rock, my backbone, my biggest supporter and the first to call me on my crap. There's a damn good reason that we were best friends for fourteen years before we fell in love.
It makes me very sad that I never got the opportunity to be a functioning, career-focused, bad ass cop while he and I were together. I feel terrible that he missed out on being with me when I actually felt that i had something to offer. I was auditing real hard for a while- running a successful nonprofit, owning a house, working many years at the same department where I was happy and hardworking (well, at least until the shit that went down resulting in my being transferred to District 4, but anywho...)...
By the time Justin and I got together, I was an emotional mess, nine months pregnant and about to give a baby up for adoption. I was not the healthy, perky, put-together 20-something with blonde highlights who loved to cook, who rode her motorcycle and went horseback riding every Sunday.
Nope... by the time he and I got together, the stalker was fully invested in destroying my life, the rescue was struggling financially, I was 180 lbs and COMPLETELY ready to be done with being pregnant, and I was in CONSTANT severe pain like I'd never experienced in my life. My back and hips hurt so bad that I never wanted to be awake. I was desperate to get the baby adopted and get back to work, but I was emotionally drained. Instead of having all these great things to offer in a relationship, I was back living with my parents, driving my falling apart piece of shit car, completely overwhelmed with everything going on in my life and I was beyond broke. I also had a freshly broken tooth and a nice case of the flu. I was just gorgeous, let me tell you.
When Justin and I fell in love in January 2011.... the cheerful social butterfly that hung out at OMaddys seven days a week was LONG GONE. And I definitely wasn't the confident, skinny chick that shaved her legs and wore makeup and dyed her hair constantly like I had been when I was throwing myself into the mess of a relationship with Mikey for almost three years. As a matter of fact, when Justin suggested that we name the baby, get a car seat, and bring him home and be parents.... I was coming off the worst year of my life, and I had never looked or felt worse - inside or out. I have no idea how he didn't seen me as an utter train wreck and run run run.
When he told me (days before Christmas, driving in his car to the rescue) that he thought I looked beautiful 8 months pregnant, I swear that he must have been out of his mind. My gross skin, swollen ankles, greasy hair, and I was SO FAT... there HAD TO BE some magical voo-doo at work... because I mean it... I had never looked or felt worse, inside or out. It took me years to reconcile that Justin really DOES love me and that he didn't just save my life (and Kaedin's) because he's forever the nice-guy best friend.
For all the amazing things he has done for both Kaedin and I, from paying for and keeping me insured, to paying for all my medications, paying off the IRS First time homebuyers loan from my house (8 grand), bailing out the rescue financially for many months not to mention killing himself to go and clean and care for things while I was often in the hospital or at home too sick..., for keeping me sane and supporting me endlessly during the years of stalking and harassment (despite it getting him dragged down into the drama too)- I can't possibly ever repay him or thank him enough.
Then there are the incredible, amazing and life-saving thins that he's done... like, i dunno... being handed a baby one day and deciding "Hey, sure, I never wanted kids, and had no girlfriend just a few days ago, but sure, let's get married, name this kid and Ill sigh the birth certificate and we'll be parents..." - there are plenty of other insanely kind things that he's bailed me out of, like getting me into pain management when I was literally hanging by a teeny tiny thread that was sooooo close to snapping. He has EASILY spent 3/4 of his income on me and my son for the last SIX years.
He put out thousands of dollars to reverse the tubal ligation that he told me not to have done in the first place (and then responding to THAT surgery's failure with "It's okay, we'll find a way to afford IVF eventually..."... I mean, the man deserves sainthood just for putting up with my mood swings, there's no doubt about it...
But... when it comes to dealing with my mother, It is CLEAR that she is his kryptonite. She is also the one HUGE problem that I deal with constantly for which he not only can't help make things better, but he actually CONSTANTLY makes it worse. Like.... way worse.
When Justin gets busy at work, he gets REALLY BUSY. LIKE, I barely see him, for days, sometimes weeks on end. This means that I'm basically a single parent during that time. I have zero help. He MAY run the dog out before or after going to or coming home from work, but mostly he may as well be in vacation, because he even sleeps in his truck at the office if it means getting an actual nap between work days, rather than driving home just long enough to turn and go back.
This month has been exactly that way... I haven't really seen him for almost three weeks or more. Many times, I haven't actually laid eyes on him for more than ten minutes in two days.
So when my mom is demanding to know when he'll have money for xyz that we owe them- and she know so haven't been out in two days, let alone had a chance to sit down with Justin and discuss our currently budget... it really is lots of fun.
Or when my parents berate me for whatever attitude he gave them before leaving for work, or whatever he left in the sink, or whether or not he took the dog out... they never really give HIM attitude, not along with an earful about what they are pissed about. Nope, that gets saved for me, for the first moment Justin isn't around.
I love the fact that I have to listen to my moms constant attitude about Justin, when it's clear she doesn't appreciate that without him- who would be supporting Kaedin and I? You know, paying the two grand plus a month it costs to keep me alive? You'ld think she'd be a little more grateful for all that he does for us. And that without him, she'd really be in a hole financially... I mean, six years and STILL no word on disability.
And Justin- yes, I know you can't stand my mother. But his CONSTANT passive aggressive bullshit with her never ends.
If I'm not lecturing her like "JUST ASK HIM WHAT YOU WSNT TO ASK HIM!"
Yes. She'd rather dance around a question for fifteen minutes. So instead of "hey, do you think you can fix woodys brakes on Saturday?" Shell ask him fifty questions about his schedule, weather or not he's working, weather he's got plans, if the weather is supposed to be good, does Kaedin have anything going on...etc etc etc. yes, it's fucking maddening... but as annoying as it is... he's also completely insane in the way he expects people to talk to him. And I'm so sick of both of them.
I put up with his mom's crap for nearly five years before blowing up and giving her an earful once. I have had nothing but a thick guilt trip laid on me about how I'm destroying his entire family by basically freezing out his mother. (Mind you, I did not do that. I have been absolutely nothing but civil since I blew up at her for being such a bitch on Christmas).
Now, granted, he lives here, so he has to see my parents far. more (and NO ONE is arguing that either of my parents are lovely people who are easy to get along with)- but Justin makes literally ZERO attempt to keep the peace for my sake. Not once, not ever.
I just wish that these people would stop and think once in a while about how hard it is to be trapped in your body, feeling like crap nonstop 24/7. I'm not disabled because it's fun or convenient feeling like a giants fucking burden on everyone... so I REALLY REALLY REALLY wish my husband would stop snapping at my mother and rolling his eyes at small talk and I REALLY WISH my mom would stop trying to micromanage both of our lives and our schedule and I wish she'd just come right out and get to the point when asking Justin something...
Because as much as I appreciate everything they both have done for me and Kaedin and as much as I love both of them... I wish they would both just shut the fuck up and stop putting me in the middle of their crap, because the stress is
NOT making my already difficult life any better !!!!
TL/DR.. My mom and my husband are both assholes.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.