Non-Compliance vs Non-Participants

So I've been giving this post some thought.  And I had to go a bit further and apply to myself because giving it some thought... there is a difference between non-participant and non-compliant. (Pardon the short choppy sentences, I'm exhausted, but want to post this.  It kept me up last night.)

Read my blog you know that I am big believer in being active participant in your own life.  I was not for a long time.  First two ACL's.  I was non-participant.  I was explaining this to husband and he jumped ahead.  Yes, I know where you are going Sweetheart, I'm already there.  I am currently non-compliant.

If I am being honest that is the truth.  As soon as the Synvisc wore off all that hard work I put into my summer when I was working out, riding my bike and walking everywhere suddenly wasn't quite so doable anymore.  My pain has to be better managed in order for me to feel like I want to keep on building on what I had instead of letting it slide.  But how to manage that?  More exercise?  Really?  I know systemically I could be stronger, core especially, however I wonder if that really will provide any pain relief.  Everyone else seems to think so.

Which is why I feel non-compliant.  I am ACTIVELY making this choice to be a lump on a log and it sucks, but I can't see what is supposed to motivate me.  Every time these shots wear off I hurt worse and often differently than before.  That's hard on the heart when your knee continues to fall apart.  I'll give either Synvisc or other hyaluronic acid chance in 6 months again if they let me...   But long short term I have no idea what if anything I am working towards.  If, well, when I have surgery again I know that I am going to have to get into shape for that.  No way would I go into a surgery again weak as I am now.  Plastics was different, but this, no way.  I am active participant and fully realize that I have to hold up my end of the bargain.

As always, I have more BioChem to do. Could you in one page support your opinion with science on why the FDA should or should not grant the Corn Industry's request to change the name of High Fructose Corn Syrup to Corn Sugar?  I'm still at 1 3/4 pages.  I say it's disingenuous.  Like sugar, but not sugar, too many chemicals used in the process.  Too bad your product got vilified...  Alas, I bet the gov't says yes.  Also (science!) while metabolized the same way, where the components of glucose and fructose enter Glycolysis is at different points because of how HFCS is made.  (Fructose is free not linked to Glucose as in Sucrose) This has implications Scientist don't quite understand.  Is HFCS contributing to obesity?  Hard to say, but I think probably a little bit yeah, that processed shit is just not good for you even if they don't know exactly why.

PubGet is my new best friend.  I've just learned of this service.  <3

Shift

I think that radical shift in thinking needs to come sooner rather than later.

It's been a rough couple of weeks... couple of months.  So much of my sense of self these days is wrapped up in how much I hurt.   Trying to separate myself from the pain is difficult.  Pain pills aren't exactly my friend.  I'm a big fan of the Ibuprofen and consequently Prilosec.  I have some Tylenol 3 that can take the edge off before bed but I almost always wake up at some point in pain and so my am dose of Ibuprofen lately has come with Psuedoephedrine.  Like I said pills and me are not always friends.  The temptation to use them not for their intended purpose is what keeps me saying no to most.  Been there-- I remember that ah-ha moment in the summer of 2007 distinctly.

I have Lidocaine patches too but if you've ever tried to use one on your knee you know how well they don't stay on.  Normal activities cause them to become unstuck... and at night unless wrapped up or taped on they roll right off.  I've peeled countless off my sheets in the morning.

Let's see? What else...  ice is my best friend?

I know that what is really lacking from my life is strength and a sense of physical well being.  But how to get that when the idea of sawing off your own leg sounds more appealing than going to the gym?  I know that this one problem shouldn't keep me from working on the rest of me. I had a great chat with a former classmate last week who is now a PT. She had some good suggestions.  I need to focus on overall picture I think.  Knee is what it is.

But I can't seem to get out of my own way.   I'm working on that aspect too... more therapy, not sure if she's helping me make peace with my past, but it does help to talk to somebody.  (Venting this past week was what helped me realize I needed to make amends with secretary not just complain about it.) I need to let go of this guilt that I feel.  As my husband reminded me this evening, no one is blaming me but myself. Right.

I also have an appointment with the pharmacologist at the suggestion of my therapist. Cymbalta maybe for a bit?  FDA approved it in early November for osteoarthritis pain as well.  I don't expect miracles but it seems like it could help.  I've read all sorts of studies about osteoarthritis pain and depression.  It's just such a nasty pain... makes me sick to my stomach.  That could also be the Ibuprofen though too. /blogress  See how easy it is to get distracted by the ouch?

I'm no stranger to sadness.  There was a time in my life when I took Zoloft and it did help.  It's no coincidence that when I was no longer weighed down by sadness I was able to change my life.  I don't expect the path I followed to lose the weight to be the same road I travel to make peace with pain.  They are similar yet different.

Regardless, I need to get moving.

How did you get back here?

It's a food holiday!  We had a nice low key meal, I blanked the dessert but otherwise it was lovely.  Things I'm thankful for include my husband and my sister and satellite phones that let me talk to my Mom in Sierra Leone for a few minutes.

I'm also thankful I can still put one foot in front of the other.

But I wish it didn't hurt so damn bad.  I'm still waiting... and hope is fading... that this Synvisc shot is going to kick in.  On my miserable scale I'm currently a bitch.  I hate being like this and when I hear some of the things that come out of my mouth?  Yikes! I cringe just thinking about it.  Pain makes me a not so great version of myself.  I know this and yet I feel powerless to do anything about it.  I already feel like I am pushing my limits of functioning as a non-crazy person.  Fixing me is going to require another radical shift in the way I think about myself... again.  But for now I guess I just acknowledge, be aware and try to keep it in check.  Not always easy for me.

I stopped by my Orthopedist office yesterday.  I need him to sign off on another form for my handicap placcard but I did it in person because I had an ulterior motive-- I really wanted to meet his secretary.  Unlike in past offices, patients (as far as I can tell) don't have any face to face interaction with the doctor's assistant (secretary, admin, whatever you want to call her).  Contact only via the phone makes it hard to get a sense of who you are dealing with without knowing what exactly is on the other end of the line.  Since her office is not in the clinic area we had never crossed paths in person.  I like to think I'm pretty likable but she and I were having some definite issues (that started earlier this year) and it was my hope that meeting in person, putting a face to the name and voice will help my cause down the road.

Although she started it (she did!) I know I was pretty awful on the phone a couple weeks back.  I haven't gone into the details but after the October fuck up and then having my appointment cancelled with no notice, I'm sure one could imagine I was not in the best frame of mind. Hysterics could be a good word here... but basically I bitched her out. She being who she is had no trouble dishing it right back.  I know now why our conversation about the cancelled appointment devolved as quick as it did.

I can small talk anyone, years at the coffee shop working mornings and being the over compensating fat girl for so long gave me the gift of gab.   Weather is my favorite but I can talk anything, religion and politics included but in this case it was vintage and antique jewelry that provided teh common denominator.  She noticed my pin, it's Weiss and I thought eureka! An opening...

But I should back up...  She greeted me (of course) with a "How did you get back here?"  Umm, I followed the signs that say Suite 11x until I came to the door, where I knocked and the nice girl behind the desk directed me to your office?  Being greeted this way kind of threw me but I recovered quick, I'm well aware by now that her default is abrasive.  I introduced myself and immediately apologized for my bad behavior. That was a genuine apology, pain can make me mean and my tirade was uncalled for.

So the pin, I always find wearing jewelry is a good way to 1.) get compliments which leads to 2.) having something to talk about.  She showed me her pin, Irish tourist jewelry with marcasites and some sort local marble that I didn't quite get the name of.   I learned that she used to be a metal smith she likes to travel and loves beads.  We talked about the warehouses in Providence where you can buy bulk vintage rhinestones, fittings and the like and about parking in the city when she owned a Pinto!

We also chatted about my knee.  It was important to me for her to understand who I am and what I've been through.  I freely acknowledged that these past experiences make me the pain in the ass patient I am now.  It's been a while since I've gone into my history and I think she was mildly impressed.  I name dropped my former surgeons, she had similar impression of ACL Doc #3 which was nice to hear.  She also reaffirmed that current Doc is a really good guy and encouraged me to check in with him if I don't get relief with this shot.  That was also nice to hear.  Hopefully she'll remember me the next time I need something not as that crazy girl on the phone but as that woman with that great not rock crystal necklace who's been through more than someone my age should.  My care is important to me and I really want it to be as hassle free as possible.

That being said my visit illustrated to me why I had to drop off this form again. On original application it's just a box that needs to be checked, but no doubt the Doc didn't and I'm sure she didn't look it over before she sent it out.  There were piles everywhere!  Filing, maybe research? and who knows what...  I would drown under that much paper. Stepping into her office and seeing all that it was immediately clear to me why it's oh so difficult to get shit done quickly and correctly.  But now I know and it won't change how I interact with his office.  Well, I'll be the kinder gentler version of myself after making that personal connection but I was reassured that I need to continue asking questions and following up.  The system, alas, is ridiculously dysfunctional... Think poorly trained weekend staff resulting in a need for blood work before a rescheduled MRI or poorly trained staff who don't know they don't do shots in Foxboro.  Secretary is unfortunately the gatekeeper to all this dysfunction.  If she does her job well I don't get that far, if she doesn't I end up wasting my time and even worse the doctors, her boss.

We had a guest lecturer in my US Healthcare system class last week a local woman who is the CEO of Portsmouth hospital.  She really pressed the kids in the class that you have to love your job and have a passion for helping people if you go into healthcare.  I'm pretty sure this woman is not exactly passionate about her job and to me that's evident in how she performs it.  She also said something during the conversation that made it sound like where she's at now is literally just a job to her, fine, good to know. That doesn't make her a bad person (I'd actually love to pick her brain about beads and jewelry and all that good stuff) it just means that the patient expereince is not important to her. There may be people out there who can over look that when it comes to their care and the quality of it,  but I can't.  I'm thankful that I have developed a sense of self that pushes me to be proactive.

Happy Thanksgiving!

Oh Internets! Part II

If you've read my blog you know that I pretty much went up and then down, then plateaued, then down again.  It took over four years.

I'm about to climb up on my soap box.  I know my way isn't everybody's weigh but it did work, so draw your own conclusions.

It's actually pretty easy to lose weight right?  I had success in high school losing 40 pounds over a summer but eventually it came back on and from there it was just up and up.  No secrets to that one regain, I just wasn't ready.  When I had my ah-ha moment in 1999 I was in college and had no real stress in my life.  Sure there was "drama" but nothing like what would come in 2007 and nothing like what had caused me to gain even more weight starting 1997.

All life has drama and stressors though.  At all times.  It's just relative.   I find that when people perceive their life to be stressful (wether or not it actually is I don't think is terribly important) or when everything is a major catastrophe then weight loss becomes a way of feeling in control. With everything else spiraling, changing yourself for the better is so appealing.  So righteous, "Look what I can do even though my world is falling apart."  But what happens when your world is done falling apart?  (Admittedly for some it never does, there is always more drama.) You are left with this foreign body and nothing to motivate you. Maintenance is not about control, it's about living.  If you don't give yourself the tools to keep it off along the way then why even bother?

On the other hand are people who are just sort of bumping along with no real hindrances.  Their weight loss is only sustainable as long as life keeps it nice and easy.  They are also in control but like the above it's an illusion.  As soon as they must cope without food, they often can't and the weight comes back on.  

So what is one to do if they want to lose weight and keep it off?

Realize that this is not a zero sum game.

When things are overwhelming the best thing that you can do is take care of yourself.  This does not mean starving yourself to keep on losing weight.  Or jumping into a bag of cookie head first and saying fuck it. MODERATION is required.  This is not easy to learn and comes only with much practice.  Weight loss is about patience and making peace with ourselves.  The end will come someday when you get to a happy weight and the tools you acquire along the way, especially when life is beating you down will be crucial in maintaing a loss.  Getting to goal shouldn't mean you start living then.  You should be doing it all along.

Puffy Post Plastics

So what's it been... a year and half since my tummy plastics?  This cold I have/had comes with this awful cough that had me all puffed up.  I was uncomfortable in a way I hadn't been in a long time.  The skirt I have on today I could not wear last week, too snug in a way that I couldn't quite figure out.  Scale was showing water weight but knowing what I had eaten I couldn't figure out why.  Must have been the muscles involved with the coughing.

Interesting the way the body works

My own Metric

I give one point for each.  Scale ends up being 1-10 this way.  It's never a zero.

Lateral (split between Tibial and Femoral so each location gets .5)
Medial (Tibial/Femoral again split same as above)
Patellar
Bakers Cyst
General Edema
Stiffness
General OA Achy Joint

Then it's +1 for any sort or worry or thoughts...
+2 if I act on any of that worry.  So for example.  I add one point I think about pain and add two points if I cut short a shopping trip because of it.  Tears are an automatic 2 points.

Currently I'm a 7 with both tibial and femoral lateral pain, patella pain, bakers cyst pain, edema, stiffness and tears.  Lots and lots of tears today.

It's amazing to me how many different ways my knee hurts me.  Intensity should probably be a consideration but I think I capture that with +1 and +2.  This works for me.  I'm hoping shortly to be back down to 4 or hopefully even a 3!  I expect the stiffness to fade, the lateral pain to ease off and if I don't hurt I don't think about it so those three points go too.

Still waiting for the Synvisc to kick in and trying not to fret that it hasn't yet.

Entitled

That's a loaded word.  But when it comes to my knee it's how I feel.  I'm uncomfortable saying it however because I still struggle with my own culpability with regards to how I got to this point.  I know what happened to me is NOT my fault.  No teenager really understands the implications of surgery and the long term consequences.  I came across this article last week and sobbed for an hour after reading it.  It's about the adolescent knee and the risk for osteoarthritis.  I've said it before but just so I am clear.  I don't think that docs should be operating on 240 pound teenagers who have no hope of rehabbing properly.  Just because you can doesn't meant that you should.  I truly believe that I would be better off today without any of those ACL surgeries.

But I did do them.  And the doctors did too.  I often wonder if the last doc who told me I would lose my mobility by 40 considered any of my past history.  What was his motivation for recommending surgery & using scare tactics?  I think he was more interested in my cartilage than repairing my ACL.  I wonder what it was that he saw in there that made him do a 180 after the procedure about the state of my cartilage.  Clearly it had been roughed up, but having done all sorts of reading now... I don't think my problems were good for the technique he was working on at the time.  I wasn't a patient needing help in his eyes I was a potential research subject.  And when I wasn't useful... well, it took more time than it probably should have to catch that Staph infection imho.  Talk about being a pain in the ass patient.

Which brings me to what is still aggravating me.  Really, I feel I've suffered enough because of that one arrogant doc.  I'm not keen on suffering because of inconsiderate office staff.  I have no use for rudeness, for having to do everything twice and least of all I can't stand being second guessed and scolded.  I'm the consumer here but as a patient this is MY LIFE that your actions are affecting.  I pay attention to my own care because I have to.  I have learned the hard way that even those who should be paying attention often are not.  They may also not have your best interest at heart.

At this point I am just about making my life a little easier and I think I deserve that.

And to say again... I really like my current doctor.  He won me over the moment he said there is nothing I can do for you right now.  He got all the information he needed first to make that call... and I respect that immensely. He's as close to perfect as you can get for a doctor but unfortunately he comes with a b*tch of a secretary.

That was me?

I have this cough that rattles my chest.  It physically hurts to breathe and I'm exhausted.  At 165 this is a hard cold to have.  I can't imagine all that extra weight sitting on my chest.

But just an hour ago I was reminded of how hard it must have been to cough when I was heavy.  I was walking behind a girl on campus whose size I recognized.  I couldn't help but watch as she coughed and the serious physical effort required.  That was me.  I tried to remember that physical discomfort and I couldn't imagine feeling worse than I already do.  Huh.

I still have a few, "Oh I don't miss that from when I was heavy..." type moments but for the most part I do try to NOT contrast and compare life at this weight and that weight.  It was novel at first but I prefer to think of myself as just this way.  Sure those experiences make me who I am, but I want to be just this girl who lives with food.  Clearly, I'm still dwelling on maintenance success thoughts.  I think its okay that I can't recall that life much any more.   I find motivation in living.  Dwelling on what that was like and being motivated by it no longer apply to me.  I have my own new and different issues to deal with now.  Some a result of being 345 pounds but some not. 

That's a relief actually.

Time heals all wounds right?  

You're no Meredith

Had Synvisc shot last week but not without more bullshit and drama.

All admins and support staff get compared to Meredith.  It's a fact that I have these experiences with which to contrast and compare.  It's also a fact that all of these experiences have lowered my tolerance for bullshit.  I have no problem asking direct uncomfortable questions when you are rude or not doing your job.

Anyway, Meredith... She was support to Dr. Donaldson at Tufts NEMC and awesome at her job.  A rare combination of both competent and courteous.  Not exactly warm but that was okay.  She always made the Doc look good, I never had to chase for anything and she didn't second guess me.  She set the bar high.

The experience I've had with the support staff in current Doctor's office? Sucks.   Do I get to blog the bad with the good?  It's my experience, my POV but I wonder if it's appropriate.  What happened last week was enough for me to ponder quitting this Doc. Maybe I'm just coming from place of pain or hyper sensitivity based on my US Healthcare System class...  Maybe.

Fact: Appointment was cancelled and doctor's office failed to notify me about it.

Sigh.  While situation was obviously remedied the emotional energy I wasted was too much.  It shouldn't be this difficult to get good care!

Checking in for Six Years of Maintenance

I'm under a pile of work so I'll stick to the highlights of the past year:

I am no longer afraid of gaining back the weight.  That has been the biggest difference between five and six.  The fear is just gone.  This year threw some challenges at me but here I am, admittedly at the high end of my range, but comfortable.  165 and all my clothes still fit and I'm able to live with food.  Maybe I'll get motivated and take off a few pounds of pain that I seem to gain with every Synvisc cycle.

The Dr. Oz experience where I got to meet some of my favorite ladies.  Hi Lori and Jenelle!  It also kind of sucked as you'll see if you click the link, but that's okay.  I'd do it again.

I had a thigh lift but NO knee surgery and found a new orthopedic guy who is on the same page as me.  I'm hoping to be surgery free for a few more years now.

I decided on a school and am well on my way to completing my coursework to become a Registered Dietician.  It's a process but everyone up at UNH has been kind and helpful.  I feel like I have found a home up there and am excited for the future.

Back to the BioChem.

I'm jealous of Dara Torres

I think this is a neat neat procedure.  But when you read about it... contraindicated for those with no ligament and history of infection. Sigh.  Working up courage to ask Doc what exactly my future hold prior to swapping out my own parts for something shiny and new.  Where the worst pain is he can't visualize.  MRI is clouded with arcs as a result of leftover teeny tiny metal fragments from my past experiences.  I would love to know what the cartilage looks like on the the lateral condyle of my femur.  Alas, it'll be a surprise until they actually go in and look. Been wearing heels lately to shift weight to medial side...  Can't do too much of that though, I hurt there as well.

Still torn about the shot on Thursday.  Pinged the Doctor... I hate being such a worrier but I'm not feeling great.  Past history makes me this way...  Paranoid?  Over thinking?   I recall my first plastic surgeon telling me that I was his little worrier.  Aw.  And then I broke open.  Or when I KNEW that something was desperately wrong after that 3rd ACL attempt and it took weeks for the surgeon to finally listen.

I hate being a nag but I know me, I know my body.  You don't go through DRAMATIC physical change with out being aware (or in my case it almost feels hyper aware) of what's going on with you.  When you ignore your sense of physical self for so long when you start paying attention decisions about your health and your care become that much more important.  I take this seriously now.  I have too, even if it means driving me (and my Doc maybe?) crazy.

Damnit, I hurt.  A lot.  But as I have blogged in past the shots hard on me systemically and I have concerns.  I'll make a decision tomorrow.

Such a mental mind fuck the chronic condition is.

Be nice to your knees

I'm sporting a nasty viral rash.  Pain included.

Thankfully it's not like the knee pain.  I'd NEVER!  But sadly there has been a rash of stories in my Google alerts lately about people taking their own lives because they can't deal.

I get it.

Shot happens on Thursday.  

Judgement

School is a lot of work.  Good happy work.  Amazing though the judgement that just oozes out of some of these girls.  Really, this is EXACTLY why I want to become an RD.

I have so many thoughts on ADA and the profession... trying to bring it all together in my head, but not quite comfortable blogging about it yet.  Stay tuned.

After today I can only hope that with age will come awareness.  I forget what it is like to be 19.