Thursday, December 29, 2011

maybe not...

Okay, so I got too excited or simply misunderstood my communication with Dr. Mayo's office.  I was originally told that if I was accepted as a referral then I would come down on a Tuesday or Thursday for the consult and pre-op appointment. Then my surgery would be the next day... So when the lady from Dr. Mayo's office called to schedule my appt - I assumed that meant I was given the green light for surgery. This MAY NOT be the case...

She called today and said she had talked to the Dr. and he stated that he would need to take new x-rays when I come down in February and that would determine whether or not I would have the surgery, but I wouldn't know until then. This has two determining factors: 1 - that the films show that I absolutely need the surgery and 2 - that there isn't so much damage that this surgery is not appropriate.

I am a little unnerved about flying down on an "unknown." There has got to be some indication on the x-rays that I already have that the surgery is warranted. I mean, come on, I can't really just fly down there to chat with the man and go over my history that is already in my file along with fairly current x-rays. I know he will likely do his own but he should be able to tell me something based on what I have already, right???!!!??

So I don't know. I am still going to go. Plan on the worst and hope for the best, right? I just don't know what is best anymore. I am living with a good amount of pain daily. So to go down there and hear that it isn't very bad and I don't need this surgery right now... that wouldn't be GOOD news. Then I would still be suck here, like I am now, with no relief in sight. I NEED next step - a productive next step.

sigh.....

Friday, December 23, 2011

one step closer.....

So finally received some communication from Dr. Mayo's office. He has accepted me as a patient. So that means my file was obviously bad enough to warrant the surgery sight-unseen. o_O

Next she offered me three dates for my visit: the first three Thursdays in February. Yikes! I talked to her on the phone initially and she stated that they were beginning to schedule surgeries he already had booked for February. So again, I am either that bad or just lucky to be coming from out of state and needing his specialty surgery that gets First Class Priority (now if only I could fly to and from in First class...)

I was extremely excited to finally feel like this might be moving forwards but now... I am just freaked out. really freaked out

I need to go back to Hip Chicks and see if I can't send down some of the patient questions from a great resource! I feel like I am zooming forward now, spinning out of control and I don't know where/what I am heading to. I have a thousand questions in my head and I can not contain them until the day before surgery when I get to meet the man who will be breaking my pelvis for the first time. Even with an outstanding reputation... I don't know him from the guy that is now one of my neighbors, since we just moved! AGH.

Feb 16th. Right after Valentine's Day. Sounds fine. Let's do this.

Moving sucks

So... we bought a house. Closed on it December 15th. We have been looking for a house for 2 years. This house is purple and right next door to my husband's brother (and family). It should be fun, will likely have some up and downs, but over... I love being close to family and the kids (my two and their one) will love it! The Dad's are already discussing plans for a snow-machine track through the two properties.  :)

But before all that!!!!!! We get to pack and move. No, I have not started packing. Why? This is like the 6th or 7th offer we have submitted on homes in those last 2 years and we have never been to closing table so I was cautious. That was stupid. Because it did close and now I need to pack - move - unpack with family coming up for the holidays... and the woman moving out asked for a couple days to get out of the house. We gave her til the 19th or 20th... ya know, because we still had to pack too.

THIS SUCKED!!!!!!!!!!!

On the main primary level because unless you are a masochist... Packing up and moving your entire household, that in that very moment only looks like worthless junk you rather light a match to, is torture.

and it hurts... A LOT.

And that woman took forever to get out. we had to do our own cleaning, and we had to make our guests help move us in and unpack... only a little.

Tuesday, December 13, 2011

another day, another drug.

woman runs. woman runs in pain. woman continues on because it is life and running provides a sense of calm. Pushing through Cobra Starship, Ke$ha, lady gaga, katy perry, nickelback, black eyed peas, sublime, the script, the fray... I think there are more songs out there I could find a way to run to than not. But these were the songs that made me feel it. And i ran..............................................until i didn't .............


And now I feel smaller bigger in physical size, but smaller than the runner I once was because of an injury to part of my body that has been almost always. MESSED UP.

So, it's not okay to take the pain medication that my body is most common with, the one it has had numerous time through this ordeal?

No.

Let's try something to let you sleep. right? maybe sleep or do a bunch of other things I won't even realizing I am doing. won't even be aware that I doing them (eat, drive, have sex...) OH MY.


Yeah doc. let's try those sleeping (er sleep sexing) pills for my insomnia... wait, it isn't insomnia, it's just pain that keeps me awake... hmmm....

Monday, December 12, 2011

frustrated...

I am learning quickly that the journey to hell and back with dysplastic hips is super slow. I am actually quite lucky that I have not gone years without a doctor not listening to me, or a giving me a proper diagnosis. I am thankful for that. I have read the stories of many wonderful women than spent YEARS in pain before getting anywhere.

At the same time... I am angry. I am angry that I have already gone the five months in pain. I am angry that I have a hard enough time getting through the day, let alone work out. I am angry that is still hurts. I am most angry at this point because I feel I am inadequately managing my pain. My new doctor decidedly gave me sleeping pills. Granted, I need sleep. My previous post talked about being tired and heaven knows, I am. But I am tired because I am in pain. I do not sleep for more than an hour or so at a time. I did have a small prescription of pain killers that I hoarded, strictly, for evening use. On good nights this allowed for a partial nights sleep. I have run out.

I know I have a crappy pain tolerance. I am aware of this about myself. OTC meds do very little at this point and I know this is partly my fault because I use them often but... I don't like to hurt.

I take hot baths. I try ice. I try heat. I elevate. These things offer some comfort with use but they do not offer relief.

I did 8 weeks of physical therapy which DID NOT offer comfort. It added more pain.

I am contemplating cortisone shots but I am hearing such mixed reviews... I don't know what to do.

I called Dr. Mayo's office today and they still do not have my file. Which would have been requested to send to them two weeks ago tomorrow. It took a week for my copy to be ready... so maybe that is right...

I want to just scream but what good would that do?

Friday, December 9, 2011

pain, pain, go away...

I am just really tired of the pain. It is constant. It ranges from mild - a dull ache that is just enough to remind you it's there, to crippling. I have threatened on FB (more than once in the past several weeks) that I am going to get a cane. but.... I can't bring my self to do it. That feels like admitting defeat. It shouldn't, because pain is your body's way of telling you that something is wrong. Well, hey, I GOT THE MESSAGE! and I am working on it.

It is hard because right now there is no light at the end of my tunnel. There is just waiting. I have been referred to a surgeon. From my research, he is fabulous. Top hip preservation surgeon on the West Coast. But. He is in Seattle and out right now on medical leave. Dr. Keith Mayo. Names sounds good. Office staff was very nice and informative on the phone. But I have no surgery date yet because he hasn't reviewed my file or given me a level of priority for scheduling.

So I just go on day to day. Glaring at pants in my closet that don't seem to go well with flat shoes. These days I can't wear all the shoes I love - that go nicely with the professional outfits I can't really fit into anymore (I guess that works out in the end, right?). Wearing the same couple pairs of pants that look okay with flats (and still fit). I think twice, or wait til I have more to do before getting up to go talk with a coworker because their office is nowhere near mine and I need to include a bathroom trip, a second stop, or a longer conversation to make it worth it to stand up and walk across the school.

I can't cross my damn legs when I sit in meetings or when I plop down on the couch. 

I ignore the laundry piling up in my room (that I had finally dug out of) because going down stairs hurts. Going down stairs carrying large loads of laundry hurts worse.

I don't want to go outside and play with my kids because the deep snow, the uneven snow,  and the ice all present issues for walking.

I don't like to go downstairs to kiss the kiddos good night in their bed because then they want to snuggle, and so do I but their beds are so tiny and it simply hurts.

It hurts to shave my legs, to bend over, to sit up straight, to lay on my side - I do NOT sleep well these days.

It sucks. and I just want it to go away. It is on my mind constantly. If I manage to think about something else for any amount of time - there is some way it brings me back, reminds me it's there.

I am tired.

Wednesday, December 7, 2011

yoga pants - a love/hate relationship

There comes a point in my day when I have decided that I am no longer caring how professional I look. I want nothing more than to rip on my slacks and put on my yoga pants. One reason for this... since stopping running (and not stopping eating) the number on my scale, staring back me, gets larger each week and my yoga pants FEEL nicer than my less forgiving work pants (and they are just so darn comfy).

So, the first thing I do when I get home? I run hobble to my room and grab a pair and sit on the edge of the bed (because I can no longer bend over to put them on) and start with the left leg. I can still bend that one. So the left leg goes in and I sit and stare for a moment at the bulk of fabric hanging off my left leg and use my mind to try and WILL it onto my right leg.

This does not work.

So I sigh and, with a profound lack of coordination, I hook the waist opening on my right foot. Then, I try and shimmy my foot farther into the leg whole until the fabric covers it. It is at this point I attempt to wiggle the once-thought-comfy fabric closer to my knee. Somehow, my foot appears to be a lifeless appendage at this point and only interferes with my ability to put these pants on. So I stand. This part I hate because the act of standing hurts but then it evolves into the act of balancing, which also hurts. So, here I am, still trying to stop snagging the freakin over-forgiving fabric (that acts like a dang slinky) up the rest of my leg. Come on!!!!  I get it on. Okay, good. So I am finally comfortable. I grab my microwave, clay - heating pack and sit on the couch or bed (whichever has less junk piling up on it) and elevate my legs up and recline back while the warmth attempts to soothe my aching hip....

And as I lay there. Finally feeling less pain and more comfort, which I love. However, in my warm comfort loving state...The thought still runs through my head... that if I was still able to run, the scale issue, which requires the yoga pant issue, which requires the pain and struggle issue, would be long forgotten. And I hate that.



Monday, December 5, 2011

A little background... (okay, a lot)

The year 2011 started off alright... This was my first year (school year) with an actual full salaried position. Heck, I even received a signing bonus! So we spent said bonus, we - being the family (husband and 2 kids - one boy, one girl) on a trip to Hawaii, to dig out of the long, cold Alaskan winter.

We returned with several days left of break and spent it at our cabin. Days full of snow-machining, hot cocoa (with Baileys) and fun. On New Year's Day (this should have been my clue for the upcoming 365), I slipped on the icy stairs at the cabin and landed on my wrist - breaking the scafoid bone in my hand. I went back to work with a cast on my hand and the beginning of a never-ending cold.

After a couple months of feeling horrible and multiple failed anti-biotic courses, my primary care doc sent me for my first MRI which revealed a stupid-crazy-stubborn sinus infection and... An Arnold Chiari Brain Malformation. A random thing where part of your cerebelum, your cerebular tonsils, hangs down too far in the space of your spinal column. It cause headaches... problems with your vision, balance/gait issues... etc...

So now I have a reason for my clumsiness right?  :) Silver lining...

Well that whole ordeal actually took months. I was sick from January to April before the MRI and its miraculous discoveries. I was put on a 6 week regime of painfully large antibiotics and continued on with my summer.

Well prior to this evil sinus infection, I was a runner... Not a great runner, not a fast runner, but someone who loved to put on a good playlist, head outside, and run til her worries seemed less stressful or her legs gave out. I had done several small triathlons (not Iron-Man by any means), a handful of 5ks, and one Half-Marathon. I ENJOYED my running time. So when I could no longer breathe and didn't have an extra ounce of energy, beyond climbing the stairs to my bedroom at the end of the day, it felt crappy, REALLY CRAPPY. Once the antibiotics did their job and I was returning to my old self - I also returned to running. I told myself to train all summer and my plan was to sign up for another half-marathon at the end of the summer in August.

I had to start off a little slow (since I had taken about 5 months off). I very quickly worked my way back up to 3-3.5 miles at least every other day, if not daily. I was getting my groove back and feeling great... until July 19th.

I was running near my house. My hip felt a little achy. This had happened maybe a couple times in the past couple years... so not regularly, more like rarely. I sat down after about a mile to kinda stretch it out a bit. Then I got up and continued to run..........until, mid-stride, I felt a horrible ripping pain in my hip area - which brought me to the sidewalk. I limped my way back home (another .5 mile) and by the time I got to my front door, I was crying and couldn't make it up the stairs. I had to crawl up, dragging my right leg behind me.

Long story short (or trying to be short, this is already long)... I ended up going to a Urgent Care where I was told it was likely a torn muscle - 2 weeks on crutches and here are some painkillers & muscle relaxers.

That visit led to a visit with an Orthopedic Physician's Assistant for follow-up. I also had 8 weeks of physical therapy which didn't help. Although, learning that such a thing as an underwater treadmill exists - is kind of awesome. PA ordered x-rays, an MRI, a diagnostic numbing injection (no cortisone just a numbing agent to help decide if the pain was located in the joint) and an MRI arthrogram (with contrast). The likely culprit - a labral tear. This is a tear in the cushy cartilage that cushions your hip joint, kind of like the meniscus for your knee (this is how it was explained to me). I was referred to a great Dr. for a scope (arthroscopic surgery) to repair the labrum.

When I met this Dr. he looked over my films and ordered more x-rays - weight bearing & false profiles. This led to the shocking moment when he informed me that I had hip dysplasia on my right hip. My acetabulum is shallow and the head of my femur is large so my actual hip joint was not structurally sound or supported by anything other than my soft tissues (ligaments, cartilage & muscles), which had been under severe stress daily and running likely caused the whole system to fail (this = labral tear).

So no scope for me - instead I am the lucky recipient in need of a extremely more intense surgery called a Periacetabular Osteotomy or PAO. This is considered a hip preservation surgery where they essentially break my pelvis surgically, rotate it to better support itself, and screw/pin it in place while I recover, which is essentially sitting around growing new bone. This surgery is supposed to have a great success rate and reduces the likelihood that I will need a Total Hip Replacement in the next 8-10 years (which was my prognosis if I don't have the PAO).

So this blog... it is to help me understand and get through all the information about my body and mind - both which appear to be .... structurally unsound.


Thanks for tuning in......