This Circus Needs a Ring Leader!

I mean that in all seriousness - the circus that is my current medical condition needs a ring leader - someone who can keep track of all the different specialists I'm seeing, open the lines of communication a little better and be able to point me in the right direction with what to do next.

A General Practitioner.

I don't have a home base to go to inbetween specialists. Someone who can really do the research for me and figure out the next best thing to try. I have essentially been acting as my own ring leader and quite frankly that shit is exhausting. I have a hard enough time scheduling all these appointments with physical therapy, occupational therapy, orthopaedic surgeons and rheumatologists... But now that I'm feeling a little stumped (and annoyed as hell), I'm not sure where to go next.

Hypermobility can be really frustrating. Some doctors will just claim there is nothing wrong with you, others will tell you it's just an inconvenience... I need to find someone who will actually LISTEN and then WORK WITH ME to connect the dots.

I'm going to call the rheumatologist right now and see what he says about getting a second opinion.

I will not settle for "I can't help you" anymore.

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. :)

Starting MORE Therapy (and a bit of an JIS rant)

So while I was at the Rheumatologist last week, he asks "have you started your physical therapy yet?" No. I had just had surgery on my hand and was waiting to get that under control before I started additional therapies. "Ok, well I want you to start. Here's another script for pool therapy. And the flexiril isn't doing anything? Here's a script for a new anti-spasmatic medication..." Took the new meds last night (1/2 a pill as he suggested to start) and I didn't really notice a difference. BUT, it's the first night, I froze my tush off on the couch and I was lamenting the Tiger's losing the World Series. I'm not throwing my hands up in defeat that I will never sleep again just yet.

After my OT today, I swung by the physical therapy office and asked to make an appointment to get my pool therapy rolling. They were very accomedating with my OT schedule and the stars alligned just right as the therapist who will be treating me actually specializes in connective tissue disorders and has JIS herself. I am hopeful that this will give her the best insight as to how to help me. A little voice in the back of my head is chirping "beware!" as one of the draw backs to finding someone else with a rare ailment (unfortunately) becomes a competative pissing match of who's case is more severe and who has the biggest right to bitch and complain. It happens all the time, ESPECIALLY with a group of women. That very reason is why I tend to internalize my shit - especially my medical issues - as nothing is more heartbreaking than having your fears and frustrations completely invalidated by a complete stranger by saying "Why are you complaining? My case is soooo much worse!"

Is it slightly ridiculous that my brain immediately goes on the defensive that I've actually potentially found someone else that suffers from the same shit as me? Ridiculous. I should be rejoicing! In reality, I despise not really understanding what is happening to my body. It's my body, I know it better than anyone. But even with the reseach I've been doing, the resources just aren't there to help me grasp the "why" because, quite frankly, no one knows. I get it, there isn't a dedicated association for this disorder like there is for Lupus, Fibromyalgia, and the other heavy hitters of the connective tissue disorder world. Why? One simple reason - it isn't terminal. Not in the immediate sense. It's more of an "inconvenience" type of disease. "Oh, your body parts pop out of the socket? That's inconvenient." "Oh, your connective tissues are falling apart and there isn't a really valid reason why? That's inconvenient." See what I mean? Echo came back clear, so for now my heart is uneffected. GOOD. So now what can I do to "uneffect" the rest of my body??

We shall have to see what the new jiggley joint therapist says!

Relief and Frustration

Relief - I do not have any of the other markers for Lupus, so that potential diagnosis is out. PHEW.

Frustration - There is nothing they can do regarding my joint instability syndrome. I just have to deal. I can continue to have surgeries that don't hold, or they can fuse my joints so they are no longer an issue, and that is it. No medications to slow it down, and they really don't know much of anything about it.

SO FRUSTRATING.

But I have my dietary focus now, so that is great news. And the Rheum wrote me a script for strictly pool work physical therapy. I asked the doc how he felt about a change in lifestyle and going 100% gluten free (I mentioned some of the research I had done) and he was completely supportive of me trying that avenue. "There have been reports of many people having great success managing their fibro pain and fatigue by cutting out gluten. I say give it a shot! It certainly won't hurt anything, thats for sure!"

So there I have it - an endorsement to take my health and well being into my own hands by a medical professional.

Turns out my Occupational Therapist is gluten free, can free, plastic free, pastured grass fed animal consuming, and raw milk drinking. 2 people in the last week have recommended the GAPS book to me, so I think I'll give it a look. It also turns out that a girl I went to middle school and high school with is a nutritional goddess and is very open to talking about health and wellness. My mom is going to go to the gluten free classes with me and she is looking into how much a membership is for us to use the pool at the local YMCA. I feel like all the puzzle pieces are falling into place to get this done right - and to be fully supported by family and friends. :-D

Stalemate...

I had an appointment with the surgeon this morning and it appears we have reached a stalemate. My surgery has basically undone itself already (damn) and she said it would be pointless to attempt another soft tissue reconstruction as my body would just tear it all apart again anyways. She said she wants to wait to see what the rheumatologist says on Thursday before we move forward. She is hoping they will put me on some kind of "biological medication" that will slow down my body's tendency to attack itself. After we get that figured out, we can move forward. Otherwise, she said she would have to fuse the bones in my wrist, and I would basically have to decide what motions I would be willing to give up: either flipping my hand over, or extension/flexion of the wrist.

Not exactly what I wanted to hear, by any means.

SO! Now is as good a time as any to get me back on track from the inside out. To see what I can help/reverse by taking care of myself and really pushing my family to accept the nutritional changes I want to see happen. When the surgeon said "biological medicine" a little trumpet went off in my brain - I can affect my biology through diet. Now, thats not to say that I will refuse medication. I'm falling apart - literally. I need to get that crap under control NOW. But I also know that once I get on a medication to stabilize my weirdness, I may be able to wean myself off should I also get all of the shit out of my diet too. Heal myself from the inside out.

Its worth a shot. It certainly couldn't get much worse...

Food 101 - You Are What You Eat

Having allowed myself a little wallow time, I feel remarkably inspired to get down and dirty with how I can do something about what is happening to me. I've decided to focus on diet. I've always had a bit of a food obsession to begin with (bulemia in my teens/early twenties) and I've tried more than once to do a diet overhaul. I've had 2 factors that always lead to their failure. 1) I didn't completely buy into what they were saying - Yes, a plant-based diet does have many many health benefits... but lets be honest here, I like how tush (animal products) taste. I just don't like how animal products are jam packed with hormones, pesticides, antibiotics... and don't get me started on the treatment of those poor souls. 2) Crappy support. So does this mean I can never eat meat or drink milk ever again??

Thankfully, the answer is no. I don't have to give these things up!

I went to a nutritional class on Tuesday with my mom called "One plate at a time: Eating to beat diabetes, inflammatory disease, and cancer" lead by Lisa (The Cultured Cook). She was AMAZING. I seriously can't wait for next weeks class!! Not only that, but she has a course on gluten-free living coming up next month... I can't wait!! But I digress...

In the class we talked about how diabetes and disease reek havok in the body. We only lightly touched on inflammatory diseases, but the following information was more than amazing. We talked about how the body processes what we eat and how we can directly effect our health with our diet. Omega 3's are anti-inflammatory. They are found in high concentrations in green grass. Humans do not produce Omega 3's, nor can we digest grass. So how the heck are we supposed to get these amazing little powerhouses into our systems? By consuming something that consumes the grass! Lisa then introduced the idea that "organic" milk only means no hormones and no pesticides were used in the cows feed or injected into their bodies... but those cows are typically grain fed, not pasture grass fed...

The old atteche "you are what you eat" is true. But you are also what the thing you're eating has been eating.

For a warm fuzzy example of this in nature: Brine shrimp eat red algae. Brine shrimp are pink. Flamingo's eat brine shrimp. Flamino's are... Pink! Flamingo's kept in captivity that are fed a shrimp alternative are... White! See? You are what you eat. ;)

Now for the less fuzzy example... Store bought chicken. Those chicken are fed corn (sprayed with pesticides), corn meal, bone meal (from other chickens, mind you), and chicken litter (ground up chicken parts, feathers, feces, and corn meal that has fallen on the ground). It's enough to make you sick, isnt it? The chickens too, so they are given an antibiotic to keep infection and disease to a minimum. And since those poor souls can't sustain life in those conditions for long, they are given growth hormone to speed up their growth rate so they can be slaughtered before dying from disease.

Yum yum. Dish me up a plate of THAT.

So I have decided no more regular old store bought meats, eggs and milk. I'm done with that. No thank you!

Last week I purchased an 1/8 of a pasture grass fed cow. I currently have just over 50 lbs of assorted cuts of meat in my upright freezer. That should last me a little while. I'm also joining a co-op for my milk, eggs, and poultry. These are all pastured, grass fed animals. Oh, and no antibiotics or growth hormones for these bad boys. The milk is raw whole milk. I know, I know, poo poo me on that one... but is your milk full of Omega 3's? Nope! They've been cooked right out with pastuerization, along with a slew of other vitamins and minerals. Is it a little pricey? Sure... but so are all these freakin medical bills!! If you're in the Metro Detroit Area, check out Family Farms Cooperative We are talking SUPER reasonable not to mention supporting local Michigan farmers. I'm also doing away with canned veggies and plastic bottles for my milk storage... More on that later. ;-)

I'm excited!! :-D

Fun fact for the day: Did you know that if you buy 1 gallon of whole milk and split it between 2 seperate gallon jugs and fill to the brim with water, you now have 2 gallons of 2% milk?? How's that for stretching a dollar??

Falling Apart... Again

Todays therapy did not go well. Tendon is subluxing again which would lead one to believe the internal tissues that the synthetic tendon sheath were adheared to are too unstable to hold. The wrist is crunching again and I'm trying so hard not to fall apart emotionally too.

I'm disappointed.

I'm in pain.

I don't understand what the hell is happening to me.

To top it off? My right wrist is starting to hurt too. I'm feeling useless and broken. I haven't been really helping out at home. Granted, I'm technically not supposed to... but I've been sticking to it as I'm physically unable.

I'm getting frustrated with being in pain all the time. Its starting to affect my relationships with people. I'm typically a very quiet person when it comes to my personal life. At times, getting me to open up and share is like pulling teeth. But lately, I feel myself withdrawing from everyone. I guess I'm tired of people asking "how's the hand?" and me not having anything positive to say. When people ask, they don't want to hear anything other than "things are going great!" I admitted things were not going well to a patient at work the other day and the look of pity she gave me...

I don't want anyone to pity this shit I've been dealt. I do that enough for myself, thank you very much.

Tonight is a rough night for Keeping It Together...

Pushed Too Hard?

Had my 5th session of OT on friday. It did not go well. I had pushed myself pretty hard the day before with my home exercises and was pretty sore. Get into OT and my wrist was very stiff and swollen. The therapist starts to do a gentle stretch and...

*POP*

We both froze. I looked at her. She looked at me. Neither of use moved a muscle for a good 3 hard seconds. I swollowed. Hard. It started to hurt. She backed off the therapy for the day and taped my wrist. Told me to take a break from home exercise and just rest my hand/wrist the rest of the weekend.

"The tendon slipping has me concerned... I'm hoping that doesnt happen again."

Me too, lady. Me too.

I'm too depressed to say much else today. It was a bad pain day.

Therapy?

I finally called to schedule my occupational therapy for my hand. I still havent called or started my physical therapy for the rest of my body as, quite frankly, I can't afford the extra $60 a week on top of the $60 I'm going to be spending weekly on OT. This "taking care of yourself" is some expensive business!!

Not to mention still being down to one car with no end of that in sight. I have a dead car in my driveway and no way to get to therapy on my own. So I have to rely on rides from friends and family. This is definitely a lesson in humility if ever there was one. I really struggle with asking for help, and this has been a difficult week for me.

My mom, the incredible individual that she is, brought over Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD. She has put little slips of paper in it, marking points of interest and adding little notes here and there. While I am still reading it, one of the biggest things that sticks out is An Open Letter from Patient to Spouse/Partner. I've been feeling really hurt and resentful lately, and I think giving annoying hubby this letter will be the big break through I've needed to express. I've been completely withdrawing from him, mostly due to resentment I feel towards him. If this doesnt work, then I'll know what I need to do.

Sleep...

Everything I have read lately regarding living a healthier lifestyle is pushing "get plenty of sleep." I understand that during sleep is when your body resets and repairs. When your own system uses all those healthy nutrients you've been supplying it with throughout the day to repair the damage you caused it while you were awake.

Sweet. Let me get right on that. I LOVE to sleep!

Oh wait... I can't sleep through the night. I can't get comfy, can't tune out annoying hubby's snoring, can't turn off my brain...

So I tried cutting out caffeine last week. I ended up being crabby AND exhaused all the time... and still not sleeping through the night.

Rheum prescribed flexiril as a sleep aid. I wake up groggy and am still not sleeping well through the night. I just want some coffee... And pop... And SUGAR SUGAR SUGAR!!!!!

I admit, I totally have a sugar addiction. Yeah, I've been toasting marshmallows almost everynight on my stovetop this week. Healthy? Not even close... But tastes so good!!

I know my nutrition and lifestyle needs an overhaul. Starting is the hardest part, right?

So where do I start? No more proccessed sugar? No more gluten? No more caffeine? No more dairy? And how do I convince my family to hop on board with this? Annoying hubby has already stated that he will not give up pasta and bread. Flat out. Not giving it up. Period. I know I can swap out with GF options, but will the stubbornness and lack of support drive me to give up before I've even started? All I can do is try... Decide my life is more important than giving in to whining and kick my own butt into gear!

Wait, What Do You Mean I'm Not Super-Human??

So in my last post I mentioned a little bit about myself. One aspect was my annoying husband. So while I have been laid up with my most recent "put body parts back on" episode, I had been counting on him to step up his game around the house. Even before my surgery to get my hand put back together, I had been trying to prep him...

Me: You know, I'll be back in a cast again after my surgery... which means I won't be able to do jack. No dishes, no laundry, no changing the small boy's diapers...

Him: Yeah, sure, no problem babe. I've got this!

Here we are 3.3 weeks post-op and he clearly doesn't "got this!" The house had grown more cluttered, toys and stuff everywhere, dog hair in the corners, dishes piled in the sink, dirty wet towels on the bathroom floor... and annoying hubby comes home from work and complains about the mess, yet doesnt do anything about it. So yesterday I had had enough. I am not supposed to be using my left arm at all - so I attempted not to use it too much. The cast isnt waterproof, so that makes for a good reminder not to use it.

Let me tell you... if one handed dishwashing becomes an Olympic sport, I am headed for GOLD baby. Tho I admit, it was intensely awkward and I can only imagine comical to watch.

Kitchen? Cleaned.
Bathroom? Cleaned.

I even began sorting through childrens toys to be put away in their rooms.

I was a Domestic Goddess. A cleaning Super Hero, if you will. I was... a complete idiot.



While my family is basking in the glow of a little corner of cleanliness in the house, I am paying for it today. I hurt. My surgery arm burns like blazes and the rest of me is just sore. I over did it. I knew when I did it I would pay for it later... but I was just tired of listening to the complaining. And I know that all I did by giving in and getting it done was enable annoying hubby. Squeeky wheel gets the grease. Complain enough and bum-arm wife will do it for me.

I'm not Super-Human. Right now I don't even feel sub-human.

THIS is the hardest part of dealing with FM, JIS, and whatever auto-immune goodies I have brewing in my lab results... Not being able to do it all. I read an article about "Living with Lupus" and it did a beautiful job explaining how you only have so many spoons to spend per day. Each activity of the day takes a spoon and there are only so many to spend in a day. I'm not ready to admit I have a limited amount of spoons.

Joint Insta-what-now?

Ok, here's the low-down on me.

I'm 32 years old, female, 176lbs, have 2 small children, an annoying husband and we eat like crap. I know, not exactly "healthy." I've been battling dislocating body parts since I was 11. Mostly it's my kneecaps that blow, but I had my left knee reconstructed back in 2003. My hands and fingers are hypermobile as well. All was well until 2007. That is when I had my first baby and all hell broke loose. I essentially undid my surgery with all the fun pregnancy hormones that make your connective tissues go wonky (relaxin, to be more specific). Then in 2009 I had another baby. 18 months apart. WHEW! More wreckage as now I have diastasis too (seperation of the abdominal wall, giving me that always pregnant appearance. HOT).

In 2010 I started to notice something wasn't "right." Moreso than just my wonky joints. I was tired. REEEEEEEEEEALLY tired. All the time. I went to an internist. He thought I might have sleep apnea and sent me to a pulmonologist. Then that jerk of a doctor said "Um, maybe you're tired because you have 2 small children at home..." Gee, thanks. So I let it go.

February 29, 2012. I dislocated my forearm and part of my hand... by taking towels out of the dryer. Clearly this was bad news... Went to an orthopaedic and was put in a cast for 8 weeks. Cast came off and... hmm... somethings wrong with my hand. Sent to a hand specialist! She schedules me for surgery and strongly urges me to see a rheumatologist. I heed her advice and one week after my hand surgery, I am in to see the rheum. He is the one who hands me the mystery diagnosis of Joint Instability Syndrome. Oh, I also have Fibromyalgia to boot. Not to mention having an abnormal ANA blood test, so I just got all my labwork done yesterday to rule out Lupus. I'll keep ya updated when those results are in. Also had an echocardiogram to make sure whatever is causing my connective tissues to be "wispy" isnt doing the same crap to my heart.

Piece of cake, right? Shit...