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. 

Wrist Appointment

Well, it didn't go as well as I had hoped... my wrist still isn't fused. The carpals are all meshing together nicely, but the actual wrist (where my hand attaches to my forearm) still has a bit of a gap. I'm having it rechecked in 2 months. If it STILL isn't fused by that time, then we'll probably have to inject the wrist space with more "bone graft material" and see how it goes. I mentioned that I was having a great deal of discomfort lately, and she suggested I continue to do my own hand therapy, but keep lifting things with my left hand to a minimum. Lifting things might be causing little microscopic tears where those last 2 bones won't fuse, prolonging my healing. So I have to cut it's use waaaaaaay back.

 

Sucks, but it is what it is.

 

I'm trying not to feel disappointed and defeated, but it's hard. We are 2 months post-op and I STILL can't use my hand. It's just a little discouraging.

T Minus 3 Days...

3 days until the fusion commences... and of course I get a wicked outer ear infection. I swear I need to do something about my OCD ear cleaning fetish. I started antibiotics yesterday and just have my fingers crossed it will be cleared up enough by Thursday for us to move forward. I've been taking Tylenol and alternating hot and cold compresses. I've also been using garlic oil drops. Stinks like crazy, but is pretty soothing too. Ready for that nonsense to calm right on down.

Ugh.

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.

Another Surgery?

Saw the Orth. Dr today. They took x-rays of both my wrists. The right one looks good - I have a pinched nerve from sleeping on the couch with my arm curled under me. I just have to sleep with it straight and it should clear up.

 

My left hand is a whole other story. She said the xrays were "ugly." The carpal bones are all twisted around and not sitting right. One of the bones that is supposed to sit in a little "socket" isn't even close. SHOCKER! But she said my options are few. Either leave it alone, or fuse the wrist. If we leave it, the wrist will remain unstable and will cause me pain for the rest of my life. It's not going to "get better" on it's own. It just is what it is. With the surgery, my wrist will be ridged, and basically stuck in the same position as when I wear my wrist brace. So I'll still be able to flip my hand over, type, etc... I just won't be able to flop my hand up and down (which I currently can't do anyways).

 

The surgery would be pretty brutal. Longer incision and some permanent hardware. They would strip all of my cartilage off my wrist bones and break a couple to promote bone growth. Then they would all just grow together. It would be similar to the first wrist surgery as far as post-op. It would be out patient and I would have another pain pump post op. Cast for 6-8 weeks and that's it.

 

Maybe I'm crazy, but I'm leaning towards surgery, and sooner as opposed to later. I know it would be another summer in a cast, but with the fusion, I should be able to be WAY more hands on with the kids - as I won't be guarding that wrist and my pain will become zero after the bones heal.

 

Decisions Decisions...

Taking a Step in Any Direction

I'm completely at a crossroads in my life right now. So I took a step. I don't know if it was in the right direction, but it was a step in ANY direction. And now that I've taken it, I'm glad. Glad and freaking the heck out. But it was a step... and I can't be in limbo any longer. I can't hide or lie or pretend to feel something I don't. I had no freaking idea how hard this was going to be...

But it is what it is, and I've taken a step.

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 Hallow Shell

I downloaded a fun little horoscope app onto my phone, as I was curious what the stars had to say about things for me... So far it's been pretty on the money - saying that things are pretty tumultuous at the moment.

Todays said: You know where you are and you know where you want to be. That is the first step and the last step. All you have to do is fill in the middle and you're on your way!

Seems about right.

But there was something else about this app that caught my attention and made me go "hmm..."

The attributes of my sign are: Active, Demanding, Determined, Effective, and Ambitious.

There was a time when I was all of those things. I intimidated people with my determination and my demanding/commanding presence. Where did I go? When did I lose my "oomph?" I can feel little pieces of the old me trying desperately to break free. Pushing to the surface. Trying to catch a breath of air to bolster itself to finally break out of the hallow shell of whom I've become.

I want to get back to me. I want to be the intelligent, vibrant woman I once was. Now, I understand that I will never be completely the same. I know that my body is different now, on so many levels, that my physical self will never get back to the way that it was. I'm pretty ok with that. I've never been 100% comfortable in my own skin anyways, so this is nothing new. But lately I haven't been comfortable in my own head either. It's kind of a shit storm in there...

You know where you are. Yep. I know exactly where I am. A broken, faded, reflection of who I once was.

You know where you want to be. I want to resurface - to breathe - to rekindle the love affair with myself. To embrace my Active, Demanding, Determined, Effective and Ambitious self.

All you have to do is fill in the middle and you're on your way! Of course they make this part sound so easy... so whimsical, haha. Falling in love with me again means admitting I've falling out of love. With myself, with others... with life. I had forgotten what passion felt like. I had forgotten what inspiration feels like as it tingles its way through you, guiding you, proding you, encouraging you onward.

This week someone said to me "You are wise beyond your years. I almost feel dumb around you. You don't make me feel that way.. but you are just a smart girl." It was the nicest compliment I have gotten in a very long time... and it kinda felt like the old me was making an appearance again.

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)

I Think I Need Help

Today has been really hard. Every once in a while I'll get smacked with the idea that what I am going through isn't going away. It isn't going to "get all better." THIS is how my life is going to be.

How the hell am I supposed to cope with "this?" Granted, "this" isn't exactly new. I've been dealing with "this" nearly my whole life. But it just seems that "this" has gotten SOOO much worse in the past year. I mean really - who the hell dislocates their hand/forearm taking towels out of the drier? Who the hell tears muscle by simply being, or sneezing? Me. I do. And it's only going to get worse???

Today's depression tailspin is brought to you by a former massage client of mine. I haven't seen her in a year, and she came into the office today looking for me. She wanted to book a massage with me, and book one for her daughter and I had to inform her of my change in career.

Broke my fucking heart.

What's worse? SHE burst into tears and lamented that she could never go to another therapist - that she didn't want anyone else. God damn that was painful to hear. Amazingly validating that I did good work as a massage therapist, stab in my heart that "this" took it away from me.

I mentioned my blah-dom to my physical therapist and she gave me the name and number to her psychologist and the therapist that she sees. She strongly recommended I call them. She said that she probably understands better than anyone what this chronic illness/syndrome can do to ones mental state, and she really wants me to call them and see them before I really start to get antsy. I think I'll take her up on it.

Somethings gotta give. :-/

Ka-CHOO!

One of my kids favorite Dr Seuss books is All Because A Little Bug Went Ka-Choo. Its a whimsical story about how a tiny little bug sneezed and ultimately sets off a Rube Goldberg of catastrophe in a nearby city. One of the last pages shows a parade and a circus colliding downtown, animals and instruments everywhere. This usually illicits hysterics from the small boy - he does love silliness.

What does this have to do with anything?

Well, yesterday I went to Michael's with the fam to pick up a family craft for the afternoon. As we were checking out, I sneezed. Ka-Choo! It wasn't a very big sneeze, in fact, quite puny on the sneeze scale - but here's the thing. I hold my sneezes in. I've been told for years I'm going to hurt myself doing that.

They were right.

During said sneeze, I felt a pop... in my abdomen. My PT checked it out this morning and thinks I may have just ripped my diastasis more, but she wants me to get it checked out. So I'm going in to see my PCP this afternoon to have her mash on my tummy, to make sure I haven't created a new hernia (I already have a small umbilical hernia). From there she will be able to make a recommendation where to go next.

It REALLY hurt after I did it. To the point it doubled me over in line... and I couldn't get upright right away. I've had lingering pain that spikes when I sit up, or engage my abdominals. I also have this lingering feeling of "gotta pee" in my lower abdomen, so I may have just strained one of the ligaments that supports my bladder. I've had no issues with urination, or holding my urine, so that is fabulous! Just one more weird thing to tack on the list of bizarre-o happenings that my rheum claims is unrelated.

We shall see what the PCP says.

Fingers crossed for a strain and no more surgery!!

Wait... Disabled?? Who's Disabled??

While I was at physical therapy yesterday, I mentioned to my PT that I drive with one hand. Having only one hand that is completely attached at this point will usually do that. She asked how I steered, and I demonstrated how I do a flat palm "Dukes of Hazzard" spin around the wheel. She shook her head and pointed out how this may not be the safest way of steering my car - and she's right, one slip and I have no contact on the steering wheel. Danger, Will Robinson! Danger! Tho more likely... Lawsuit, Will Robinson! Lawsuit! So she made the suggestion of getting a steering wheel knob that I can grasp with the good hand and properly maneuver my vehicle.

"And did you get the device from Bed Bath and Beyond yet that helps you open jars?" Oh yeah, I need to pick one of those up too.

So I started looking online for proper steering wheel knobs and other "assisted living devices."

And it hit me.
Like a Mack truck.



I am disabled.



This isn't going away. None of it. The rest of my life will be spent within varying forms of disability. I was always embarrassed or ashamed after a dislocation when I was younger, but the light at the end of the tunnel was that I would grow out of it. That I would have the massive reconstruction to my knees and the pain, embarrassment, and shame would go away with it.

But it didn't.

Now before anyone attacks me for being embarrassed or ashamed of my disabilities, please keep in mind that I am not embarrassed or ashamed of others who have disabilities. Not one bit.

When I was younger, I would get teased for constantly being in and out of an immobilizer for my knees. Kids can be pretty cruel, and I tried pretty damn hard to fade into the background, to fly under the radar of the "popular kids" who had previously caused so much emotional harm. Having an "invisible" affliction is HARD. People can't SEE what's wrong with you, so they either have to ask, or just make assumptions and judge. I don't look sick.

The finger splints help as a visual marker to others that something is different. Most people assume they are jewelry, but are always amazed when they ask where I got them. I haven't had a single cruel comment about them yet. But I'm bracing for it. That scared, hurt little kid in me can't help but brace for a rock that might be coming.

I know I'm rambling, and jumping around. But when learning what the "new normal" is, it can be a bumpy road. Getting out my fears, concerns, sadness, and upset/anger are all part of the grieving process of losing the "old normal" (which oddly enough wasn't all that "normal" to begin with - but I wanted it to be). It isn't easy to admit that things are different... and aren't going back to the way they were before, no matter how badly I want them to.

My PT also recommended that I seek out a counselor to talk to. She said that coping with an invisible illness can be very stressful, especially when half of the medical community will tell you it's all in your head. I may heed her advice and look into it. I'm not very good at coping. Not by myself anyways.



In other news, saw the rheum of doom this morning. He refilled my script for more PT, and prescribed a mild antidepressant in an attempt to get my sleep pattern back on track. I am cautiously optimistic that it will help me sleep better at night. The kids also picked out a memory foam mattress topper for hubby for Christmas. We put it on last night and I woke up with the least amount of pain in my hips in months. Yay. Fingers crossed the combo of new meds and new comfort in bed will be the right cocktail for more restful sleep. See? Positive outlook at the end, in spite of myself. ;)

Happy Holidays!

This time of year is always so hectic... And this year was no exception. I had a lovely holiday tho, surrounded by family and friends, and I got some pretty sweet gifts too!!

Unfortunately I did not make it through unscathed. I managed to partially tear one of the heads of my bicep. In the next couple weeks, it will either heal, or tear all the way through.

Goodie.

So other than my arm randomly trying to fall off, I had a great holiday. My little girl turns 5 tomorrow... Hard to believe she's getting so grown up so fast!

Head, Shoulders, Knees and Toes, Knees and Toes!

Things had been pretty uneventful over the last several days. I took the day off of PT yesterday as I was feeling under the weather and now I'm regretting it. Last night I got the strangest pain in my shoulder. It was definitely a pulling/tearing sensation. I tried putting my arm in several different positions, hoping it would release. Nothing worked. Today it does feel a little better, but oddly by bicep is completely sore and my arm feels "heavy." Almost as if I can hardly lift it on my own. Normally my shoulders are pretty compacted, but this one seems to be sticking out slightly further today, and it's also sitting a solid inch lower than the right.

Of course it's on the left side.

What the hell is happening to me?? I get the why, I do. I was just hoping for a break... Is there no such thing as a break when your body tries unravelling and tearing itself apart?