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. 

Next Up...

Jaw.

I've officially reached my tolerance threshold for my jaw, so that is the next major joint to be looked at. I've been in contact with 2 tmj dysfunction specialists and go in May 11th to get the scoop as to what the hell is going on in there.

My hope for a year without issue will not be happening.

Day 8

Lets try this again, shall we?

Day 8

This is kinda fun!

Happy New Year

Trying something a little different... a video blog entry!!

Yeah, I couldn't figure out how to imbed my video...

Wow. My hair is getting really long. Now you get to see my face and hear my voice for once. :)

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.

Busting My Butt (In A Good Way!)

I've been pretty quiet lately - mostly because I have been completely obsessed with working out and tracking my calories. I am so determined to loose weight and get fit... and doing it the right way! :)

This week I'm down 2 lbs. I've been tracking everything and thus far I've burned 900 calories. That's this week. To say I'm proud is an understatement! I'm really working hard. My face has even started to slim down already... Thank goodness!!!



Post Op Appt

Just got in from my latest post op appointment with Dr Rohde. Have I mentioned how much I like her? Cuz I do. She gets my weird humor and gives it to me straight. My kinda Doctor!

Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"

It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!

I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!

So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.

Here's my show and tell moment!

Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.

The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...

And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.

There you have it, folks. I'll post pics tomorrow if my splint is finished.

I Dreamed A Dream...

I love this version. Haven't listened to it in a really long time. The meaning is so different now... living with a chronic illness that slowly takes away everything you love about life.

"I had a dream my life would be... So different from this hell I'm living..."

Its a high pain, low morale kind of day.





Then, on YouTube, while sifting through some of my favorite singers, I come across this gem:

 

Ok, first of all, Brian Stokes Mitchell is my favorite baritone (sorry Dad...) and this song really moved me to remember the bigger picture. Plus epic crescendo's always make my hair stand on end. In a good way.

 

 

Speaking of epic crescendo's, this one gets me every time too:

 



My favorite tenor of all time, Luciano Pavarotti. The final stance when he's singing guts out? He's saying "Vincero! Vincero! Vincero!" which in Italian sounds like "vini-cello." Translation?

I will be victorious.

 

 

 

 

I hear you universe... I hear you. Vincero!

Post Op - 2 weeks

Here we are, 2 weeks post op.

I'll be completely frank. This surgery SUCKED. Pain management was really an issue for the first 5 days... but everything is under control and I am completely off prescription pain medications. Yay. There were several nights tho that I really was having a hard time... I feel very lucky that I had one of my best guy friends to talk to at 3am on several occasions, otherwise I may have gone mad.

So this begins my journey of learning how to use my arm/hand all over again. Everything is going to be different on that side... Everything.

Heres a couple pictures for those who are curious. If not, scroll quick. ;)

Shortly after surgery. Very swollen and uncomfortable. 

11 days post op - bandages come off and incision is revealed. Its lovely!

Detail of incision. Internal sutures and dermabond (skin adhesive glue)

I went with a nice black cast this time... Black goes with everything and is slimming, right? ;)

As for the actual surgery... Doc said it was "jacked up" in there, and she feels 100% confident this was the best choice. I'm also her youngest wrist fusion to date. I asked if that earned me a metal... "Why yes," she said. "Its in your arm!"

Very clever... ;D

I was missing cartilage in some spots, had mutating cartilage in others... it was just a mess. Now it will be so much better!


OH! I've also started the application process for disability. No clue how that will pan out, but I gotta give it a try.

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?

Two If By Land!

I've been pretty quiet lately... But today I have something to talk about! Today was my first day of physical therapy on land. I know that doesn't sound too spectacular, since I've been hauling myself around on land my whole life... but it's a little stepping stone for me in this journey, and I'm excited about it. It was HARD. New exercises for me to do at home in addition to my putty hand ones too. We are really getting down to the nitty gritty of why my knees are all out of wack (my muscles being built up so much to maintain stability on one side, completely weak and unstable the opposite way). It's really nice having a PT that "gets it." She doesn't push me beyond my limitations. She questions when things pop or crack, rather than have me "push through it."

Such a blessing.

I see the PCP I adore on the 26th, and the rheumy of doom on the 27th. The PCP actually mailed me an article and brochure about "living with hypermobility syndrome." because she researched it and wanted to make sure I had seen it! LOVE HER. Rheumy of doom just said "thats inconvenient" and wrote me a script for new drugs. Hmph. Guess I know where my allegiance is tied...

Discharged From OT

It's hard to believe, but as of today I've been discharged from OT. My most sincere thanks and gratitude go out to Marilyn and Kelly, my compassionate, brilliant, amazingly wonderful OT's. I've already friended one of them on fb, and I'm sure I'll be keeping in touch with the other. I feel overwhelming gratitude to these women, who have been so instramental to helping me achieve the tools I need in order to be successful. They have been nothing but 100% supportive along this leg of my journey, and I can honestly say they have been a blessing.

Marilyn and I were discussing today ways to make splints and braces more "beautiful" and I think I may be on to something... I came across a really cool bracelet on Etsy that I may be able to incorporate into my bracing. And it appears it may be easy enough to make on my own. Marilyn even gave me some extra foam and told me to give it a try - and to come in and show her if it is a success!! :D

Here's the bracelet I was looking at:

 I was thinking I might be able to wrap it on top of my already existing brace, or incorporate it into becoming an actual brace itself. I may have to check out Michaels to see what clasps they have, and possible medallions. Maybe a new calling?

Silver Ring Splints

Someone got a Christmas present early... My silver ring splints arrived!! We somehow managed to miss ordering my left thump DIP joint, so that one has been re-ordered... but the rest are in my possession and on my fingers. I'm typing with them on RIGHT NOW. And I have to be honest... My fingers feel AMAZING. I cried at OT today as I zipped up my jacket to leave - I could actually zip up my jacket without any knuckles buckling. They didn't hurt. It was AMAZING. I feel so blessed to have these tools!!

Now to that I feared would be the tricky part... I needed to figure out a way to store them when I have to take them off! There are currently 17 of them (soon to be 18) and they are all different sizes. Well, technically 3 of them are the same size, but I just have to learn/memorize who goes on what joint! So I mentioned this to hubby and he suggested something really quite helpful! He went out and purchased a foam core block that has sections that punch out - it's originally used for storing miniatures - but it worked out just great for the rings! I punched out individual homes for each ring, and there was enough room left over to also create spots for my wrist brace and both thumb braces. Yay!!

And now, for some pictures!

What they look like from underneath:

 

Fingers all braced up and ready to go:



 My fingers look really really swollen in this picture:

Storage container, with all rings and braces inside:

 

Silver rings looking all sparkley and pretty:





Seriously??

Dislocated a toe tonight. That was NOT fun. Apparently my body didn't get the memo that we are only blowing out one body part at a time. That was really annoying. Taped the toe to the next one over for stability. Perhaps I should look into toe splints too as my toes tend to bend over backwards...

And now I'm going to bed.

Annoyed...

Finger Splints pt II

Got the rest of my knuckles measured for my finger splints. Now the battle begins to get them ordered/paid for by my insurance company. I have a back up plan if that doesnt work out, but I would rather not go down that road. So fingers gently crossed for insurance coverage. Orthopaed is 100% in support of the splints and said she will write the prescription for them. I may have picture updates in a couple weeks of my newly splinted fingers!

She has also given me the recommendation of a couple other rheumatologists whom she feels would be more appropriate. One of which is the same name that my moms PCP recommended (the same PCP I'm meeting with on tuesday!). I'll give this new guy a call and see what he says. Hoping he's more supportive and less of a shit than the last one.

Told both the PT and the ladies in OT about my verbal boxing match with poopy-rheum. They were all so proud of me for speaking up and not settling. I'm pretty proud of me too. :)



I also talked with the PT a bit today about the different types of Ehlers Danlos. She suspects I may have type I or type II, in addition to hypermobility type, but as she's not an MD, she can't diagnose me (which I knew, its just been nice to pick someone elses brain who knows a lot about it!). I think I'll do a couple posts on just the different types, just for knowledge sake.

Boxing Gloves Are ON

Last night I finally got a hold of my rheumatologist and really gave him a piece of my mind. I was polite, yet firm that "Oh well, nothing I can do" was not acceptable to me as a patient. I reminded him that he works for me, and that through my own research, I was not willing to let go of the possibility of Ehler's Danlos just because I don't have excessively stretchy skin. That is ONE symptom of many... ONE. He attempted to blow me off again and said "Even if you do have it, you don't have the terminal form and the treatment is the same - physical therapy. What does it matter?" I told him it matters to me to put a name with the face I've been dealing with for the last 20 years - that I wanted closure and to seek support from others with the same syndrome. That I wanted validation that there really IS something going on other than just a classification of a possibility. Joint Instability Syndrome is a classification... I want to know WHICH ONE. I also said that I wanted to know if this is genetic, if I should be watching for signs in my children, and WHAT I could/should be watching for. I wrapped up my piece by saying that I am young, and being told "nothing I can do" takes away hope and invalidates my fears and concerns as a patient. "Nothing I can do" means YOU'VE given up looking into it further. Sometimes all people have is their hope, and by saying that, you strip them of that hope. If you're not willing to look into it further, have the respect for your patient to tell them so. "There's nothing I can do, but lets look into who can" would have gone WAY farther with me, and I would respect you more as a doctor for admitting your limitations. There's no shame in not being a specialist in my weird anomaly  but for heaven's sake don't just blow me off!

After that he was quiet for a moment, then thoughtfully asked me what he could do for me. "If you come across a specialist or geneticist, you let me know and I'll get a referral written up immediately. If you need any changes to your PT script, please let me know and I'll do it. If you come across alternative medicines that you'd like to try, bring in what you've found and we'll discuss if it's appropriate to try or not. Also, who is your PCP? Make a list of all your symptoms and weird stuff in chronological order and lets get your recent lab reports over to her. You still have concerns about vascular type Ehlers Danlos in addition to hypermobility type? Your echocardiogram looked good. But huh, your blood pressure is really high, isn't it? Make sure you bring that up to her - we'll need to get that under control."

I feel like I was finally a part of my medical team. You know why? I was rooting for me and DEMANDED that the doctor start rooting for me too. I've been very lucky - My Orthopaedic Surgeon is a saint, my Occupational Therapists and Physical Therapist really listen to my concerns and offer suggestions - it's a shame this rheum was not as excited to be on my team as everyone else. I'm hoping my new PCP (I see her Tuesday) will be as excited to work with me as my current team and maybe she can offer a referral to a different rheum who will be more attentive and I won't have to do his job for him and pull teeth to get the care I need.

Finger Splints

Today was another day of measuring/sizing for my finger splints at OT. She gave me a set of cheapy plastic ones to try on one finger to see how they feel and see if they are effective for me. The difference I feel already is SIGNIFICANT in just the few knuckles I have braced. So now I just need a script from my Orthopaedic Surgeon (no prob there, she knows I'm an anomoly and will do just about anything I ask to make sure I am comfortable) and to run it by my insurance company and convince them it is a medical necessity. I think I'll send them the following pictures and see what they say...

Without Splint:

With Splint:

Do you see the difference? Because I sure as hell do. Plus I FEEL a difference. Typing right now doesn't hurt in that finger. I'd forgotten what not being in pain felt like... If this is it, sign me up. I'll start selling my plasma NOW to get my hands taken care of.

Pool Therapy

Today I went to OT and discussed silver ring slints for my fingers. The therapist was more than enthusiastic about it and got me sized for 4 fingers. She said she would discuss it with my other therapist and get them ordered for me. I think I'll have them measure my pink fingers on Monday. They sized my ring and middle fingers. We shall see Monday what the other therapist says. If insurance doesnt cover it, they are $81 per knuckle.

All I had to do was ask.

All this time I haven't been advocaing for my own health. All this time I haven't been complaining because I just figured it was "normal" to be in pain... in pain to the point I don't feel it anymore. Not good. And I hate being the center of attention. I didn't want

But I'm on the right track. I am not accepting the rheumatologists "there's nothing I can do for you" to mean this is the end of the road... it just means hypermobility disorders are out of his wheelhouse and I need to look into a second opinion, or find someone who knows more specifically about hypermobility. Someone who won't just shrug and say "you're skin isn't stretchy, can't be Ehlers-Danlos." My physical therapist was encouraging me to really push for more information/answers and not to accept "Sorry, nothing I can do" as a final answer. I told her I didn't even know finger splints existed until I saw her hands and a lightbulb went off in my head. She seemed genuinely pleased that I asked for them in OT.

Finally. Some people on my side.

Physical Therapy

Met with my new physical therapist... and I couldn't be happier. She confirmed my hypermobility in my fingers, wrists, elbows, shoulders, knees, and ankles. She asked me questions that no one ever had that made complete sense. I nearly burst into tears at the end of our evaluation and thanked her for getting it - for not treating me like a hypochondriac and understanding my body. She smiled and nodded and said "I get it. I know how frustrating hypermobility diseases are. Thats why I'm here to help."

She was wearing these beautiful finger splints. As I'm typing, my hand is actually hurting and I'm watching my fingers buckle over backwards. I will ask her for her opinion on finger splints and see if they help her - and if she thinks they may benefit me...

Productive introduction. I'm thinking I'm on the right track here.

She recommended getting a referral to a geneticist. She doesnt want me to accept "joint instability syndrome" as my diagnosis. "So there is a hypermobility syndrome... but which one?" I hadnt even thought of that. So I want to ask the rheumatologist about testing for EDS. I will give them a call in the morning.

Feeling pretty positive. :)