Listen!

"Listen. I can’t stress that enough. Listen. 

Diagnosis of EDS can take years. I showed signs and symptoms of it practically from birth. But because no one would listen to me, or believe that my pain was as bad as I said, it took over 10 years to get a diagnosis." -Christina Gooch (EDS advocate and writer)

This weekend I felt I had to yell to be heard when it comes to some of my EDS symptoms. I had to yell to people I shouldn't have to yell at. People I shouldn't have to explain myself over and over and over to. It was difficult and extremely invalidating. It's hard enough to have to fight the medical community to put two and two together to figure shit out, but it's another thing entirely when people you once trusted, once respected, also chime in on how your realism is a downer, and denial is much more optimistic.

Fuck optimism. Pretending I'm fine and ignoring the issue is more acceptable than actually listening to me and giving me the help I'm asking for? Denial runs deep in some circles. Circles I no longer want any part of.

I'm frustrated and I'm fired up.

July 1, 2016

According to the Social Security Administration, the date that I "allegedly" became disabled is July 1, 2016. Well, on my second application anyways.

I had a meeting this morning at SSA where they reviewed my application and asked questions to amend it, so it would make the most sense. Like, why did I go back to work full time after I filed (and was denied) Social Security Disability Benefits in 2014? Well, the government declared I wasn't disabled, and since I "had another hand" I could work in a different field. So I tried. I tried and it didn't quite work out. So in July of 2016 it became evident that I couldn't work full time anymore.

This particular interview was just about my work history and what it is exactly that I do. When I asked about the medical stuff, my case worker said that it would all be reviewed in the next 30 - 60 days, and that they would mail me a letter of determination. She said it can take as long as 6 months if they have a hard time collecting medical records or verifying my employment. I completed all the information online, but there really wasn't a place for me to explain what it is like to live with Ehlers Danlos. All I can put down are the symptoms: chronic dislocations, hypermobility of my joints, fibromyalgic pain, chronic fatigue... But that isn't what living with this is like.

It's waking up every morning and doing a quick assessment to see what may have slipped out of place while I slept, and figuring out how to pop it back before pain registers. Its having to think about every step I take - willing my body to stay put together, concentrating with each step "ankles in, knees in, don't hyper extend, don't roll." Lather, rinse, repeat. It's looking at a basket of laundry and having to guess how much it weighs, and how likely it will be to sublux my wrist and fingers just by picking it up. It's tensing up every time I am near a dog who jumps up, or has a tail or body right at knee level - even when it's my own dog. It's having to explain to nosey clients, cashiers, complete fucking strangers on the street why I have ring splints all over my fingers, and why my hand looks kinda funny. It's having to make sure I don't wack an already broken fused wrist on tables, walls, chairs, doorways because my brain still registers that hand as functional and I literally forget that I can't bend it out of the way and I'm left not only feeling pain, but feeling stupid for not knowing better. Its waking up with tendonitis in my right hand/wrist and not knowing if today is the day that my other hand is going to fall off... That I will no longer be able to type, to drive, to cut my own fucking food...

So I'm a little frustrated today. With the process. With my body. With the unknown variable of what my body will do next to fail me. I never know what is coming, and that is really scary and frustrating sometimes.

May is Ehlers Danlos awareness month... Yay?

I just feel very small and alone in this moment. I'm running out of options and I'm trying to figure out how to provide for myself and my family. It's possible I may not qualify for anything because I'm still married, and that sucks too.

-----------

On a different note, but also somewhat frustrating... I made a couple more fluid paintings yesterday. They were both quite interesting to me, and apparently they gained the attention of my mother. She knows the process. She knows they take weeks to dry. So why she felt compelled to fucking touch one of them and drag her finger down the middle of it is beyond me. It wasn't just a little smudge in the corner... She dragged her finger across it. She admitted to me when I got back from my appointment that she couldn't help herself and she "touched it because it was so pretty..." but it's wet fucking paint... I resisted the urge to snap at her to keep her fingers out of my creative processes, that she had no right to touch it, and she does NOT have permission to meddle in things concerning me. Those thoughts raced through my mind... But I looked at her face, her body language - she looked genuinely sad and embarrassed and I told her I was a little annoyed, but perhaps she should just refrain from touching the canvases without asking first. She said that was fair... and that she was expecting me to be mad.

"Well, you did just single handedly ruin my budding art career, but I'm sure I'll figure something else out since it's now over forever and I'm never going to make another one of these things ever again..."

I laughed it off and she stopped holding her breath. I think she was expecting a similar explosion to the ones I have been dishing out to my father lately.

Not today, Mom. I'm too tired. 

Here's the Skinny...

Okay, I think I have my stuff together enough to talk about what happened.

Saturday February 22nd at 5:10pm I got a frantic call from my friend J* (names changed to protect anyone who cares to be protected). He says he can't get ahold of his roommate, Joe, and asks if I can pop over to the house to check in on him. I say no problem, thinking it was no biggy and he was probably asleep on the couch or his phone was broken or something. I drove over, thinking it would be a quick trip.

J* was on the phone with me when I pulled up. Before I pounded on the door, he said "Mer, this could be really bad... Make sure you make your presence known as you go in the house... There are guns in the house." You'd think I would have hesitated or thought differently or whatever, but I just did the usual Meredith "Dude, no worries, it'll be fine!" And pounded on the door.

No answer.

Went to the back door and pounded.

No answer.

I got the spare key out and opened the back door, yelling for Joe (the roommate). No response, but I could hear the dog going ape shit further back in the house. I walked slowly, continuously calling for Joe. No response. I came around the corner.

And that's when I saw him. Joe was propped up comfortably. Almost casual looking... Except that half of his face was missing. He had killed himself with a shotgun and it was a pretty brutal scene. I was still on the phone with J* when I found him, and to hear the anguish in his voice as I told him his best friend was gone... It broke my heart.

In that moment, I realized that nothing would ever be the same. I walked back into the kitchen and started to make a list. I wrote down the address as I knew I wouldn't be able to remember it off the top of my head. I also wrote "911" at the top, as I knew I had to call them too. Thing is... I was so disoriented I wrote 919... But I quickly crossed it off and wrote it correctly. Police were called at 5:36pm.

The next several hours were a blur. The police had me wait in my car, asking me questions I didn't know the answers to. I had to wait the entire time as I agreed to take the animals out of the house (J* was on vacation, the animals couldn't be left in the house). So I stayed. The entire time. The Medical Examiner finally showed up and did their investigation. After Joe was removed, I called D* to tell her the horrific news... and to ask for her help. I knew I was just about maxed out on my emotional stability, and catching cats was going to be the end of me. I went back into the house to assess the damage... I had asked the ME to pick up as much of the brain matter off the floor as they could. They said they would, but I wanted to make sure. They did a decent job removing the chunks, but it isn't their job to clean. I just wanted to immediately start cleaning, but I just stood there and stared at where Joe had been. Marveled at the splatter pattern. I knew it was out of my capability (Blood born pathogens and all).

D* really helped me keep it together. She's pretty freaking amazing.

So now here we are in present day. I'm trying so hard not to let it bother me. I've been counselor to many people about the incident, but I've lost J*. He's hurting so much and I can feel it. I reached out to him and he warned me that he was going to lose interest in everything, including me. I literally sobbed and begged him not to cut me out... In a later conversation, he said that he was avoiding conversations and people that remind him of Joe. Unfortunately I am sort of standing right in the middle of that shit storm in his mind. I told him that I would stand as far back as he needed me to. He said he would let me know. He's moving to AZ soon and then he'll be gone forever. And all I'll have left of our friendship is the memory of seeing his best friend blown to smithereens... and knowing that seeing and speaking to me causes him pain.

It sucks.

SO. To my dearly beloved friends who keep tabs on me via this blog... Please do not take my standoffishness personally. You all know that I will give my life for the people I love... For my friends. I took a bullet that day, guys. I gave up a piece of me that I know I will never get back. I don't regret it. I'm glad it was me. I know we all say we would do anything for our friends.

I've proved that I would.

I'm just reassessing things over here a little. Figuring out what my boundaries are. I'll be back up for air soon...

Day 8

Lets try this again, shall we?

Day 8

This is kinda fun!

Fusion It Is

June 27th I go back under the knife, hopefully for the last time for this body part. I can't believe my surgery is only 10 days away. I'm a little excited, but mostly terrified right now. I made the mistake of researching the surgery further and watched a video of an actual procedure.

This is going to hurt so bad initially... So bad...

I'm sitting here trying not to cry at the moment. I'm just feeling so overwhelmed, yet I feel like I can't say anything to anyone. I've hinted that I'm nervous to family and friends... but this is more than just nervous. This is it. This is the absolute end of my massage career. There is no turning back after this surgery. Granted I can't do massage NOW, but with my wrist fused, I have to look at alternatives to everything going forward.

Driving (won't be so bad, I drive that way now)
Eating (will be tricky. Try cutting your food with one hand immobile at the wrist...)
Typing (until my hand is fused AND I can pronate my hand again, I'll be typing one handed.)
Showering (I HATE bathing with a garbage bag on my arm... but it is what it is.)
Grooming (since my elbow will also be immobilized during the cast process, my hair will be an absolute mess. Which reminds me... I should think about dying it next week so I don't have horrible roots right away)

I'm nervous.

The Universe Has A Frying Pan...

Ever feel like the Universe has a frying pan? And just when you're losing your shit and acting crazy, you get that *PLANG!* up the side of your head? Sometimes the universe whispers sweetly in your ear, sometimes you get the frying pan.

I was cruising around on Facebook and was struck by this quote:

"However capable and skillful an individual may be, left alone, he or she will not survive. When we are sick or very young or very old, we must depend on the support of others. There is no significant division between us and other people, because our basic natures are the same. If we wish to ensure everyone’s peace and happiness we need to cultivate a healthy respect for the diversity of our peoples and cultures, founded on an understanding of this fundamental sameness of all human beings."

~ Dalai Lama ~

 

I have such a hard time with this concept. When I'm sick or hurt I just want to be alone. Asking for help is SO HARD.

**EDIT**
A friend had this posted on his gmail chat status. The Universe is definitely talking to me today...

 

One of THOSE Days

You know the ones... Where it feels like you can't do anything right and the world knows it? That you just can't quite get a handle on what exactly you're supposed to be doing at any given moment? I'm having one of those days today. And it's not because I don't know what I'm supposed to be doing - I know exactly what I should be doing. I even have a prioritized "to do" list!

I just don't want to. Any of it.

I just want to shrug off all my responsibilities and head back up north, waving my middle finger as I go. Not helping with ANYTHING, just dumping everything at everyone else's feet and saying "here, you deal with all this - I'm done for now. Oh, you don't know how to take care of this? Well guess what, I didn't either until you initially dumped it at MY feet and asked me to take care of it. Did I bitch and complain? NO. I made some phone calls, asked some people, and FIGURED SHIT OUT without whining and complaining the whole freaking time. You know why? BECAUSE THAT'S WHAT ADULTS DO. No one is going to hand you things on a silver platter, that just isn't realistic. Sometimes you have to work hard and figure things out all on your own. Here, take all this and give it a try." (shove shove shove)

Yeah... It's one of those days. I should go outside and sit in the sun for a bit. Get my Vitamin D on and just soak it up.

Can you tell I hurt my wrist this morning? I did. Totally got bashed while trying to get a temper tantrum induced toddler dressed. It hurt. A lot. Got my wheels turning that I'm not sure how much of this I'm expected to actually take. I'm not feeling very strong right now. Quite the opposite. I've feeling exceptionally fragile and vulnerable. So I'm putting up my normal front when things are spiraling out of control... "Everything is just fine and I'm happy to just be alive!" It's a front... I'm losing control over here...

I want bacon... <3

A Break

I mentioned I was going to head up north to my parents house for a bit of a break - a little reprieve of my life to just relax, heal, think, and be.

It was wonderful.

I sent an email to the bestie describing what I did, and I shall paste it here... Since it perfectly articulated what I did, why try to recreate the wheel. ;3



What I Did on My Summer Vacation

1) Ate Bacon

2) Ate Candied Bacon

3) Ate Smores

4) Ate Candied Bacon... ON a Smore (struck culinary genius with this one)

5) Printed stuff on tank tops

6) Made some crappy art

7) Took a (mostly) naked nap in the sun on the deck

8) Went for a hike with B'scotch

9) Ate Bacon

10) Played fetch with B'scotch for hours

11) Went for a 2 mile walk with B'scotch (walking in sand should count for 3x the activity)

12) Thought about who I've become - and that I don't care for her very much. Also thought about finally being honest with DH about who I feel I am - what I've been twisted into, and what I've done in the past. This TERRIFIES me, but I can't move forward with my head firmly wedged up my ass in the past. "You gotta put your behind in your past." 

13) Slept in a huge snuggley comfy bed.

14) Woke with the sunrise, went to bed when I was tired

15) Meditated

16) Did some gentle yoga poses/stretches

17) Laid in the grass and just listened...

18) Ate Bacon

 

Next time I will go up for more than 44 hours.

 

OH! I also took a couple baths... in the ginormous Jacuzzi tub. Just me and Buddha, chillin.

I suspect he's up to something...

Pay It Forward

I did something today I haven't done before. Not to this extent anyways... I paid it forward. And it felt GOOD.

I went to Michaels to get craft supplies for a fundraiser I have in mind for the 3-day. As I walked to my car, a young woman, who looked lost, scared, and overwhelmed approached me. "Excuse me ma'am... I am so embarrassed to do this, but do you have a couple bucks? Our car is out of gas and we have a long way to go. I'm so sorry to bother you..." She looked down in shame. Her clothes looked like she had been in the car... for a while. I looked at her, smiled, and said "do you have enough gas to get to the gas station?" She looked bewildered and stammered "I... I think so?" I nodded and said "Ok. I'll follow you to the gas station and put a couple bucks in your gas tank..." It was at his point one of her travelling mates got out of the car. "Heather, what are you doing?? We'll figure it out, leave that lady alone..." I smiled again and shook my head. "Its no bother... Can you make it to the gas station?" Her jaw dropped and she nodded. "Ok. I'll follow you."

It was as if the traffic Gods were smiling. During rush hour we had a perfect opening for both cars to turn left on a busy street. The lights cooperated and we were able to coast into the gas station just as their car ran out of gas. I walked up to the car, swiped my car and asked where they were headed. Heather chimed in they were heading to Alma or some such city. They mentioned they weren't from around here (the car had a Maine plate) and that they were literally stranded in a city they weren't familiar with, with no friends or family anywhere nearby. I nodded as I listened, thoughtful to what they had been through. "When was the last time you ate?" They looked at each other, then to me, then down at their shoes. "Its been a couple days..."

I looked to the driver. "Ok. Here's the deal. You, fill up the car. And Heather, come inside the gas station with me and pick out a couple drinks and snacks for your trip." Heather followed after me, thanking me profusely and praising God. We got a couple items and the other girl came in with my receipt. As I was purchasing the food, they both told the cashier that I was an "angel from heaven." He looked at them like they were crazy. When he looked to me, I smiled and gave him a wink. When we got back outside, the girls both gave me several hugs, thanked me profusely, and again said I was an amazing person. I smiled and said "I'm not an amazing person. I've done plenty in my life that I am not proud of. Plenty that would categorize me as far from saintly... But I have one stipulation to my generosity today..." They both looked so scared... "I only ask that you pay it forward. That if you see someone else who is struggling, you give them a leg up if you are able. That is my only request."

"Ma'am, you have a deal. You've saved our lives today... and we will never forget you." Another hug and they were on their way. I wish them well.

Random acts of kindness... They do exist... and I'm proud I was able to participate today.

Hiding Doesn't Help...

Therapy Round 2 this past Monday. The session itself was pretty mild, the conversations after were a bit more indepth.

Then the 24 hours lag it takes hubby to process set in and it's been a whirl-wind since, to say the least. He's panicing, scrambling, smothering me... He doesn't understand that by doing that he is pushing me further away.

And I've been hurting. My whole body just hurts... and I'm not sure how to tell him I can't take anymore. I am having a really hard time hurting as much on the inside as I do on the outside. It's getting to be overwhelming. I can't make the physical stop or go away... I'm stuck with that for now. But I just want a break from the emotional hurt and pain too. I just want a little time away for myself to just breathe a little, regroup, find my footing again...

But even if I ask for it, I won't get it. I'll have to demand it, take it regardless of hurt feelings and tears, and power through.

This sucks.

And now he's acting like everything is fine. Hiding in plain sight...

Interesting Side Effect...

Went to couples therapy Monday night. It was originally meant to be for us to work through our issues and learning to cope with the "new normal" together. But as I was seeing the councellor separately first, it kind of morphed into what can I do to make myself more comfortable, more stress-free, and the topic of me "taking a break" from my family was discussed. I had a breakdown and told hubby all about the things I had been thinking/feeling (wanting to leave, having everything planned out should I "accidentally" parish, not feeling happy, etc) and he was actually excited to go to therapy. I was so uncomfortable the entire time I was there, but I had some very moving moments of opening up about my past relationships - of what has brought me to where I am today.

I had an enormous breakthrough of letting go of past hurts... I have always been very envious of the relationship my mother and sister have, and as long as I can remember, my mother has always said "I don't want to hear it" when I would attempt to be closer to her - to share my life with her on a deeper level. I thought for years it was something I had said or done that caused her to have no interest in a deeper relationship with me. It wasn't until this therapy session that I realized it's not because she doesn't love me - it's because she loves me so much that when I share hard times and pain, it is just too intense for her. I can empathize with that completely. Its her defense mechanism that I had been misunderstanding as lack of interest/lack of caring. I felt a great sense of relief, a weight lifted from me when it finally dawned on me.

The rest of the session wasn't quite so warm and fuzzy (not that the previous realization was what I would call warm and fuzzy to begin with)... Hubby admitted he knew I wasn't happy, that he doesn't think I've ever really been "happy," nor does he really believe I'm capable. That was hard to hear, but mostly because it's true. We talked about how I internalize EVERYTHING and never really let things out. It was good to have that acknowledged.

But the strangest thing happend on the way home. I started to hurt... All over. And intense ache through every tissue in my body. I suspect I've not only been internalizing my mental pain, but my physical as well. I was not prepared for such a flood of physical pain. I am NOT a fan of that... If opening up and being a better person means being in chronic pain all the time, I'll take being an introverted hag over the alternative any day...

Feeling a Little Lost

Depression has not been my friend lately. Yesterday I spent 80% of the day in bed. Not moving, just sleeping or crying or just laying there, staring off into space.

It was a bad pain day, both physically and emotionally.

My daughter was inquiring if the dogs are going to die. Hubby handled it pretty well, telling her that yes, someday they will... That dogs just don't live as long as people do. She cried. I wasnt even there, and it completely triggered a shut down for me... I'm not going to live as long either. How am I supposed to explain to my children, my babies, that I'm not likely to see them have children of their own? I know anyone can go at anytime... I know that no one knows how long they have. But I'm also tired of living in limbo. I'm not "happy" and haven't been for a long time.

We start couples therapy next week. I'm excited and soooooooooooo nervous. Tools for coping...

Taking a Step Back

My last couple posts have seemed pretty bleak, which is appropriate, as I have been feeling that way lately. I have had more going on then just my body falling apart. My family life is a little shakey right now too. I've been trying to vocalize my needs, and I am simply not being heard. Or I'm being heard, and then deliberately ignored - which in my opinion is so much worse. I mentioned couples therapy to the hubby and he was confused. "Why would we need that?"  Oh I don't know, so that you hear and maybe acknowledge what I say? So that we can BOTH be armed with tools for coping with the "new normal?" So that we can figure out a game plan for moving forward?

In response to me leaving and spending the night at my parents the other night (again, I was not being heard or deliberately ignored) he booked a long weekend where we spent our honeymoon... A thoughtful gesture, only we are also bringing the kids, and quite frankly we don't have the money to GO on vacation right now. So not only will it not be relaxing, as I'll still have to be Mommy and watch my kids like a hawk at a water park (they can't swim yet, so my anxiety will be through the roof - plus my instability in the water is pretty bad - all my braces have to come off) but then I'll have to worry about how this is going to effect our finances for the next couple months too.

His mother brought up that she heard we were going on vacation, and that she was excited about it. I told her I wasn't so sure about it, and she looked shocked. She rattled off the list of all the fun things there are to do and I just clinched my teeth and said "You're absolutely right, Hubby and the kids are going to have a great time." She sighed heavily and said "You know Mer, sometimes you just have to go along for the ride." I got so angry, I practically shouted "No, sometimes I have to be the only fucking fiscally responsible adult in the house and it is utterly exhausting. If we can't afford to go to Disney in the spring with the rest of you guys, we can't afford to go on a long vacation anywhere else either! Maybe I can schedule to have our heat and electricity shut off while we're out of town, since they are about to do it anyways..." She just looked at me like I had slapped her (well, I verbally did I guess) and my sister-in-law chimed in that it was time for a topic change as the tension in the room had gone through the roof. I said I was sorry and just looked at the ground.

I am ALWAYS the bad guy.

My father-in-law quietly said after "you know, I agree with you." It was a little validating to have someone on my side, but it was also so uncomfortable being there after my little outburst. I left shortly after.

Running away on a mini vacation is not going to make "this" go away, nor is it going to make it any easier for me. And undoubtedly, Hubby will set some deadline that the house has to be "completely clean" before we go anywhere, adding additional stress to what is supposed to be a fun thing. But since I'm the one saying this is a bad idea, or that we should think about rescheduling or something, I'M THE BAD GUY.

I'm not the bad guy, I'm the adult in this situation. In every situation.

I really need to take a huge step back from my life and really take a hard look at what is adding ridiculous stress to my life. If it's something I can change, I'll change it. If it's something that is unwilling to compromise or listen, maybe its time to let it go. Something has got to give, and I'm just tired of feeling like the only one who is bending/breaking.

Asking For Help

I've never been very good at asking for help. Ever. It's just not something I'm comfortable with - which I know is just one of those ridiculous mental flaws that I have.

But now that I literally am having a hard time doing what used to be normal everyday activities, I'm finding that I can't do things alone. As much as I think I should be able to...

So today I am single parent as hubby is off in California for the weekend being a good sport. Long story - not worth explaining. It just so happens that I have just about zero food in the house and need to head to the grocery store. With both kids in tow. AND I'm having a wicked pain day today after washing ALL the dishes yesterday by myself. So I asked a buddy yesterday if he could help today. Yeah, sure, no problem. Well turns out today that he is spending the day with the new girlfriend, so he won't be available to help until after 5pm. I was hoping to be starting dinner by then... So I told him no worries, I'll ask around.

Asked newest buddy and she is repainting a room in her house today, so she won't be available. Wanted to ask super bestie, but she just got home from a work trip herself and it was her first time away from her little baby. I don't want to intrude and bug her - especially because I think she might be at work today anyways.

Now I know beggers can't be choosers, so if I want someone to help me, I really need to be flexible to their schedules. Only... it's not just me - I have my little peoples schedules to tap dance around too.

I just hate feeling rejected when I already feel low. I know it's not intentional, but yeah... This is why I don't ask for help. The rare times I do ask I try to ask in advance, then when the person I was counting on bails, I'm screwed trying to find a replacement last minute. And then I end up having to take care of shit by myself anyways. So why bother asking in the first place?

Maybe I'll call my dad. See if he can at least meet me at the house after I get home to help bring the groceries in. Or my brother...

(sigh)