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...

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.

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...

No News is Good News?

Still no word back about my labs or my echocardiogram. I see the rhuematologist again in October, so I'm sure we'll just go over everything then.

Anyone else out there feel like Autoimmune diagnosis is a huge game of "hurry up and wait?" Get these labs done! Now wait... Get your heart scanned! Now wait...



I knew a diagnosis would be time consuming, but I hate the feeling of not knowing.

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!

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...