Apparently my daughter is a lost cause...

At least Blue Cross, Blue Shield seems to believe so. I am bitter to say the least.

I had written our PT a long list of questions after our Dr. appointment last week, asking about how to handle our PT from here on out, including his recommendation that her other ankle needed PT. I had brought in his script last week and dropped it off, because I knew we were almost out of sessions. While in the office, they told me I needed to call my insurance, so I did. I spoke to someone very high up, who is in fact a Dr. and a physical therapist and familiar with EDS. She told me that she would need to talk to the PT, not me, which was fine. I did ask her about my coverage, and she told me that PT NOT the orthopedist decided how often Bug should be coming, and that my policy would only cover PT that was showing improvement, and would not cover any maintenance. She really stressed the improvement part...

Fast forward to today. Today we went to PT and our PT informs me she spoke with the same insurance person I had, and that we would need to talk at the end of the session about things. I at this point knew how it was going to go, so I wasn't caught off guard. Our session was spent teaching Bug some extra exercises for her posture, as well as for her shoulder, plus more for her ankles. The PT gave me lots of printouts on these exercises to take home to work on. (see where this is going?) She also checked her ankles, and agreed that the left ankle seemed much weaker than the right (the one we have been working on). She had the student who was shadowing her also feel how loose both ankles were.

As this is going on I went ahead and opened the door knowing what was coming. The insurance lady had spoken to her several times, and basically told her that they would not continue to cover work on Bugs ankles past the 24 allowed yearly visits (we are on 23 today). That she should send us home with exercises and "see what happens" from there. She stated that while they could approve more sessions for another issue, it would be very unlikely it would be many (PT seemed to think about 5) so it would be in our best interest to "save" some. That with EDS there is only so much you can do, because it's the nature of having Ehlers-Danlos Syndrome.

I am so pissed. The PT was really conflicted, because like me, she knows that without improving these things now that Bug will have a hard time as she grows. She mentioned puberty, and how things will be worse for us then. I know that, but I hate to think about it. After all, we've been through 23 PT sessions for 1 ankle in 4.5 months. I don't want to think about it getting worse yet!

She was worried that something might happen to Bug and we need serious therapy and we won't be able to get it. Unfortunately, I have to agree after what I've heard from the Blue Cross Blue Shield lady, and from what she said about her conversations with the BCBS lady. I know I will fight if that did happen, but in the meantime, what about working to keep it from happening? I can't fight over every single thing - the odds are too high that at some point I will need these people. But the attitude that "it's just how EDS is, so we aren't going to waste our resources and money" really makes me SO mad! This is my daughter - she is not a number or a faceless person to me. It's already totally unfair that she has to spend her life with this degenerative disorder that no one can cure. But now we have to deal with the fact that our insurance sees the PT that is helping stabilize her some as a waste because it doesn't fit neatly into their timetable for healing, and it won't ever "fix" the problem.

I asked the PT about the other ankle, and what we should do for it besides our home exercises. She grimiced and said she'd recommend bracing it too in light of this. Nice - so now Bug can wear two itchy unattractive ankle braces around. Thank you BCBS - I really like how the solution to my daughters problem is all about being cheap even if it's costing her emotionally.

Bitter. I am so freaking bitter right now. I suppose the good news is that it frees a lot of time up from appointments. On the flip side of the coin that means an increase of personal time invested daily. How to keep Bug motivated on an ongoing basis to do them all is beyond me...

I hate Ehlers-Danlos Syndrome. I hate that this is likely just the beginning, and that no one seems to believe there is a point to trying to stop what is going to happen in the future. I believe that we should fight it as long as we can - but I can't do it alone. That's the problem.

Oh well, I'll just have to try to keep the PT up at home as best I can, and hopefully that will be enough. Right??? I guess I shouldn't just assume that because everyone says her ankles are loose, and she has times where they feel like they will "fall off" that it won't all be ok if we work hard at home. Right???

Time to put my positive hat back on, and stop complaining. It won't do any good anyway. ;) Plus, Bug needs me to be strong, because I'm the one she is looking to as an example on how to react. If I am depressed and bitter, she will only feel sorry for herself instead of learning to overcome this. My vent is over for now, and I hope that our PT at home is successful! There - that sounds much more positive, right?!


Mackenzie said...

I hate to hear that she is going through this! I cannot imagine going through this at her age! I struggle to get through some days, and I am 18! My EDS didn't get really bad until I was almost 17! I always had dislocations and weak joints that I was in and out of PT for, but it didn't hold me back or prevent me from having a "normal" childhood.

I see that Bug is a very strong girl and is going to be one strong woman! God has something amazing planned out for her life, and I am excited to see what it is! He is in control of all of this! Yes, I HATE EDS too! But without having to struggle with EDS, I wouldn't be the strong girl that I am and I wouldn't have been blessed and encouraged by Bug's strength because I wouldn't know her! There is a purpose to all of this, even though this is very difficult!

I will continue to pray for Bug and your family!


BubbleGirl said...

Bug's mom,
I wish I could give you a really big hug, and tell you to keep your chin up.

All I can say is keep fighting, because it'a people like you that make this world a better place.

So... *HUGS* to both you and Bug, just a light squeeze for Bug though, don't want to dislocate anything. Keep finding things that make you smile.


Vegan Danielle Davis said...

hi there!! i have an EDS blog i thought you might be interested in following:

I am so sorry to hear about the insurance issues. I know all the drama with them - I went through it for years and just had to give up going to any PT or chiro or any other appts that they deemed not covered because they weren't showing improvement. improvement is relative, when your body is going to fall apart by the day, week, year if you don't do things like preventative maintenance. but, our health system sure doesn't see it that way.

i lost my insurance cause i can't afford it, but just to see for the future if they would cover me, no one will take me due to all the medical past. so, now i am uncovered and uncoverable!

hang in there. keep up with the exercises at home. it is so good that you know now, at an early age, so that you can do things to prevent more damage yourself (unlike me who danced through high school and made things way worse, all while dislocating things left and right). the physical therapy will help, if you can keep up with it. something that has helped me is a tens unit at home.

my PT, a while back, gave me one and applied to the insurance to see if they would pay for me to keep it. they paid some and the company determined i needed it so badly, they donated it the rest to me - so i walked away with a free tens unit! :) this helps build muscle around my joints without any impact. i use it all over my body, but specifically was told to use it on my wrists and knees. see if they would do something like this for her.

hang in there and keep your chin up! it is one day at a time. the sun does shine!! :)


EDS type 3, POTS, bipolar disorder

Achelois said...

I have your blog in my reader. I have EDS as does my 19 year old daughter. My heart goes out to you. I understand the frustrations so so well, you have my empathy. The anger is natural but emotionally exhausting. Please keep posting it helps in some small way to share. Take care.

Anonymous said...

I've been in much the same position.

My back, shoulders, and hips recover...but only so much. And then I'll re-injure them in the same way, but because I already had PT for that particular type of injury, I can't get another round of it. Drives me CRAZY!

I get 60 calendar days to have PT per injury - usually ends up meaning about 16 sessions, which I'm sure you can understand are often enough to somewhat manage the immediate trouble, but not enough to actually stabilize and strengthen to the point where it won't happen again.

Good luck. I've been fighting my insurance tooth and nail to attempt to get the kind of care I need, but still only getting so much.