Thursday, June 13, 2013

I can drive again!

I had my 6 week post-op appointment with Dr. Roh today, and it was all good news! I am now officially allowed to drive, swim, do low-impact cardio, wear heels, and sleep on my stomach. (Those things might not sound like a big deal, but they are!) 

It was funny because when Dr. Roh saw that my tattoo was just slightly crooked he got all mad at himself and was like "Aww, come on! Your crown! I thought we had it!" And he called his assistant in and he was like "Matt, look at this, it's off by like a millimeter! Man..." Apparently they have a lot of fun piecing together people's tattoos so when they end up crooked they are very disappointed with themselves. Haha. But he said as soon as my incision fades to back to my skin tone that means it is fully healed and I can get my tattoo touched up. So, no big deal. 

Still don't know when I'll be back to work yet. My next appointment isn't until August 8th, so I'm assuming that's when I'll get the go-ahead to go back to work. 

Anyway, without further ado, I got my new xrays! As you can see, I am part robot. I found out I am also apparently part zombie, because they used cadaver bone for my fusion. Gross.


My kyphosis is down to 65°. Not back to normal range, but he said my spine was really stiff during surgery so that's the best they could do. Oh well, it's better than 87°, and at least I know that it can't get any worse now. And my scoliosis is pretty much non-existant, yay! My official height is 5'6.5", so I gained an inch. And the weight keeps falling off... I'm down to 128 lbs. Before surgery I was close to 140.

All in all I am feeling pretty good. I am glad I am allowed to do more things now, and Dr. Roh said in a couple months the muscle soreness will go away and I'll be feeling a lot more back to normal. I got a prescription for physical therapy, so I will be starting that as soon as I call and set it up. That'll give me something to do. Should help get me moving again and strengthen my back and core muscles.

Things are looking up. Just gotta find ways to kill my boredom now!

Bent but not broken,
Robin

Friday, June 7, 2013

Withdrawal


Its been a couple weeks since I've posted. I am 5 weeks post op now. Time is a blur. Day after day of doing nothing. My life seems to have no purpose right now. Most of my day is spent wishing it were bedtime so I could just get into bed and sleep away the boredom. I hate recovery.

Most of this talk is probably spurred by my withdrawal symptoms. I finished my Percocet a couple days ago and had to switch to the Norco. Turns out emotionally I am having some pretty killer withdrawal. Physically I am okay. I may have a little nausea here and there, but mostly what I'm battling is anxiety attacks and depression. I am naturally an emotional person, so having all this extra on top of my regular rollercoaster of emotions is a bit much. It's not a good feeling to not be in control of what's going on inside your head. I know I have no reason to be sad or upset right now. I am comfortable at home with my dog and my fiance and I am recovering from a serious surgery. There is no shame in that. And yet I kind of feel like Rapunzel. I'm trapped in my little tower and I'm being prevented from seeing and doing so much. It may sound sad but I don't remember what it's like to feel occupied and happy. Even though I try to visit family and have friends over and stuff... Ugh.

I don't know what I'm saying. Jon is out getting me a movie so I can have something to occupy my time. I'm just so bored, I feel like my brain is melting out my ears. I hate this. I have no more joy or spirit. This surgery has officially sucked everything out of me.

Bent (and feeling kinda broken),
Robin

Thursday, May 23, 2013

3 weeks post-op

I realized I shared before and after photos from a back view, but I never did a side view! So here that is. I am really happy with the way everything turned out. :)


I am 3 weeks post op now, which means 3 more weeks until my first appointment with Dr. Roh since my surgery. I hope that when I go he is able to show me my post op x-rays so I can share those! I'm sure they look bad-ass. I am part robot.

I'm having better days now. Some days are better than others. I am weaning off my painkillers so it's nice to feel semi-normal again. I still have pain but it's not as severe, and I am becoming more self-sufficient. I actually went to the store with Jon today to pick up Tangled because I feel an intense need to watch that movie. Haha. And Nair because well... 3 weeks of not being able to shave my legs has led to interesting results. At least I have a sense of humor about it now, right?

Anyway, pizza's out of the oven and ready to be consumed. 

More later. :)

Bent but not broken,
Robin

Monday, May 20, 2013

Cabin fever!!

photo from Tumblr

I. AM SO. FREAKING. RESTLESS. I don't know what to do with myself lately. I don't feel well enough to actually DO things like crafts or coloring or even reading magazines or watching movies. All I do is lay around and then get on the computer for awhile. Then lay around for some more and get on the computer again. It's so frustrating. Deep down inside me I know better days are coming soon. I can feel it. I can feel it when I pass the time to take my painkillers by like an hour at a time without noticing. I can feel it when I am taking a shower, that I know I would not have been able to do these things last week or the week before. Recovery is so slow you hardly even notice it. I have lost most of my steri-strips now. All that's left are the ones on the far bottom of my spine where my drainage tube was inserted. My scabs are starting to come off. Everything is really looking how it should. So how do I know if I am feeling how I should? It's frustrating. I want to feel better. I want to do things. I want to have energy and life again. 

Someday soon these things will come. Right?

Right. That's what I'll keep telling myself.

Bent but not broken,
Robin

Thursday, May 16, 2013

I've seen better days

I am just over two weeks post-op now, and this whole experience is so mentally and physically exhausting. Some days are really pretty good, but most days I feel like I need to put on a brave face and tell everybody that I am okay even though I'm not, so that nobody worries about me. I don't like making people all scared and concerned when they don't really need to be. It's just so hard to put up that front all the time and I keep having mini meltdowns. Today was definitely one of those days.

Being on so many prescriptions is not fun. I'm on narcotics, muscle relaxers, nausea medications, laxatives, supplements, you name it I've got it. It all makes me feel terrible. I know they're necessary, but they're terrible. It's like I'm damned if I do, I'm damned if I don't. If I take my painkillers I feel like I'm going to float away and throw up at the same time. If I don't take my painkillers, I feel like my body is tearing itself apart. Trying to find a happy medium seems almost impossible. I am trying to wean myself off of some painkillers to try and regain some semblance of normalcy. I don't like not feeling like myself. Today that caused me to have an anxiety attack. So I cried, took a shower, ate some soup, took some painkillers, passed out for four hours, and felt better when I woke up. I'll probably be repeating that cycle soon.

Most of my steri-strips have fallen off of my back. I think it's a combination of me finally showering, and me rolling around in bed that is loosening them up. Now that they are mostly gone I can see my tattoo is quite a a bit crooked now. Boo. I am disappointed about that. I am hoping my tattoo artist will be able to fix it a little or make it look somewhat more normal somehow. I don't know if that's possible.

I'm gonna go nap or something now I guess. I took my meds and I'm feeling weird now again. So goes my life.

Bent but not broken,
Robin

Saturday, May 11, 2013

10 days post-op

I can't sleep for the life of me right now, so I guess it's probably a good time to write a blog entry!

As of yesterday (Friday) I was 10 days post-op. Every day leading up to this so far has been filled with meltdowns, tears, restlessness, lots of pain, and fudging around with medications to figure out a combination that would work for me. I was started on Norco, which wasn't doing much by itself other than making me sick. I have been wearing anti-nausea patches since the night before my surgery, and in they hospital they started me on anti-nausea pills as well. Once I determined the Norco wasn't working for me, I called my surgeon asking for a new prescription and he put me on Percocet. That alone still was not enough so I called again and had to add Valium as a muscle relaxer to the mix, which I think is finally the magic combination. I just started the Valium yesterday on top of my pain and nausea meds, and I was able to do SO much more than I had been in previous days! Yesterday I think I spent more time up and about than I did laying in bed. I am now able to do most things without the help of my walker. I can get in and out of bed as I please, walk around, get myself snacks (that are within reach, anyway) sit at the computer, and I even cleaned the kitchen a little bit! Everyone is saying that moving around is the key to recovery, so I've just resigned myself to the fact that I need to do more of it. I will try to do the same tomorrow. I might even take my first shower tomorrow! We'll see. If not tomorrow, then Sunday. My incision isn't looking as gnarly as I thought, and the only actual part of the incision that causes me pain is at the very bottom where they had plugged in my drainage tubes. Not a pretty sight. I also have to take laxatives daily because the narcotics slow down your digestive tract. And on top of that I am also taking Prilosec for heartburn, and Calcium pills to help my fusion heal more quickly. I am so sick of swallowing pills by now! 

I have to say though I am really pleased with what I can see of my correction so far. My scoliosis seems to be completely gone (since it was pretty minor to begin with) and my kyphosis has been reduced considerably. I still have a bit of a hump at the top of my back where it meets my neck, but I am hoping that is a postural thing that I will be able to work on with exercise and physical therapy in the future. I don't have an appointment with Dr. Roh until 6 weeks post-op, so it'll be awhile before I can see my xrays. But for now, look at the awesome before and after that I do have right now! 

Before & After

Look at the difference! I finally have a normal waistline, everything is more even, and I don't have such a large hump anymore! I am so excited. I can't wait until the swelling goes down and the steri-strips come off so I can really see what I am working with now. I even had Jon measure me. I started out at 5'5.5", and when he measured me yesterday we got around 5'7.5". I think I grew two inches! I'll know for sure at my 6 week visit when they measure me and everything.

Even just looking at that picture I would say that all the shit I've gone through in the past couple weeks has been totally worth it. I know it's not over yet, but I am starting to really think I made the right decision. :)

I'll keep updating as things progress.

Bent but not broken,
Robin

Monday, May 6, 2013

Nighttime, nurses, and needles


Surgery and hospital are over! My surgery went will with no complications, yay! I felt great the night of my surgery once I got into my room. I was soooo high on anesthesia and everything, I was like "Hey, this isn't so bad!" And then the next day was a brutal awakening. The nurses woke me up at like 8 a.m. for x-rays, which meant I had to get out of bed and get wheeled down to the xray department and then stand to have xrays taken. So not fun. The rest of Thursday and Friday were pretty bad too. Totally got no sleep because nurses kept coming into my room like every hour overnight to check my blood pressure, heart rate, circulation and movement in my feet and hands, give me pills, flip me over, fix my IV, blah blah blah blah blah. I got unhooked from my catheter, drains, and IV yesterday, and after I got on a good pill schedule, they let me go home.

All in all this experience so far has been really crazy. I never thought I would be in this much pain. I guess I thought modern medicine would make me feel great and I wouldn't have moments where I want to cry because it hurts so bad. But really there are moments where I want to cry because it hurts so bad...

I know there is a light at the end of the tunnel, but I'm not seeing it yet. 
I still haven't seen my new x-rays either!

I feel like I'm just typing nonsense now because my meds are kicking in and they make me drowsy, so I guess I should stop. I'm sure I'll be updating frequently now that I'm home all day for a long time. So yeah. 'Til next time..

Bent but not broken, 
Robin

Monday, April 29, 2013

Two days! :(



Gah, it's sneaking up so fast. Friday was my last day and my friends at work threw me a party since I won't be there for 3 months. Today I did a lot of cleaning and running around doing last minute things. (And getting attacked by a devil dog while walking Lyla, but that is a story for a different day..)

Tomorrow is my last pre-op appointment with Dr. Roh, then after we get home Jon is bringing Lyla to his parents house for a few days. Wahhhhhhhhhhhhhhh. I'm going to miss her so much! I have to keep reminding myself that it's not the end of the world and that I will see her again soon. And that she will be with his parents who will take good care of her and she likes being at their house and it won't be a big deal. She'll miss us, and we'll miss her, but when we get back home we'll just be really excited to see each other and have lots of snuggling to do.

My mom's coming tomorrow too, so that she can go up to the hospital with us in the morning. The next couple days are going to be so weird. Well, to be fair, I guess the next couple of months are going to be so weird. Normalcy is over for awhile.

Sigh. I'm nervous. But soon I won't have to be nervous anymore and the scary part will be over.

Bent but not broken,
Robin

Wednesday, April 24, 2013

One week. (Eek!)

Soon my back will look like this!

Well, that week totally flew by. Holy shit. At this time next Wednesday my surgery will be over and I'll be in my room at the hospital!

I had my pre-anesthesiology appointment and lab work done last Friday morning. It wasn't too bad. Jon went with me for moral support, which helped a lot. I had to do a lot of stuff at the hospital, but it really didn't take too long. Signed forms, anesthesiology interview, blood pressure, heart rate, EKG, chest x-ray, urinalysis, and blood work. They had to take so many vials of blood, I thought I was going to pass out. The nurse was like "This vial will be to test your clotting, this vial is to test your antibodies, this vial is to check your blood type, this vial is to check your nutrients..." and the list went on. I felt really icky afterwards, but it passed quickly. Then Jon took me out for a delicious breakfast and made everything all better!

Tomorrow morning I have to go to my GP to get a medical release for surgery I guess. And then Friday is my last day of work. We might be going down to Jon's parents on Sunday to visit, then Monday I'll have to get my stuff together for the hospital. Tuesday I have my pre-op appointment with Dr. Roh, Jon is taking Lyla to his parents house (this is the part I'm most upset about! ugh! my puppy!), and my mom is driving up to our apartment and will sleep over so she can come to the hospital with us in the morning. At the ass crack of dawn. My surgery is at 7:30 a.m. and I have to be there at 5:30. Ugh. At least I'll be sleeping most of the day so it won't really matter? Hah. Optimism. 

I'll have to remember to take some before photos, because I don't know if they're going to do that for me at Dr. Roh's office or not, and I'll definitely want to have before and afters!

Bent but not broken,
Robin

Wednesday, April 17, 2013

Two weeks.


Sleeping has been horrible. I don't think I've gotten a full, comfortable, restful nights sleep in at least 3 weeks. I have anxiety dreams all night and wake up exhausted. I am tired every day. I can't get to work on time because it's so hard to get out of bed. My head aches. My body aches. I am so over it.

My surgery is 2 weeks from today. 
It's all starting to feel real and I'm starting to feel scared.

I got a call from my surgery scheduler today, who gave me a list of dates and times of pre-op appointments that I need to go to in the next couple weeks. I actually burst into tears tonight at the thought of not seeing my dog for 5 days. Is that normal? Haha. Probably not... I don't even know how long I will be in the hospital. It could be 4 days, it could be a week, it could even be longer if there are complications. 

I hate not knowing. That's probably what makes this so scary. I don't know for sure that the surgery will go well. I don't know for sure that I will be in less pain once I am healed. I don't know what my body will look like. I don't know if my daily tasks will be helped or hindered by this surgery.

I just wish that living in pain or fusing my spine weren't my only two options in life. I hate that some people are acting like I am making a bad decision. Just because it's not something that they can see or recognize as a serious problem, they don't think it's a big deal and that I should just be able to live with it, or that there are other things I can do to fix it.

This is not something I decided to do on a whim. I tried physical therapy. I tried pain-killers. I thought about it for about a month before I finally arrived at my decision to schedule my surgery. This surgery is life-changing. It's not an easy way out. I will be in pain. I will be out of work for months. I will have to learn new ways to move and do things. I will basically have to re-train my body. There is no going back after spinal fusion surgery. But I know deep down that this is my best option, or else I risk my curve getting worse, and being in increasingly more pain over time.

I just want it all to be over.
Two more weeks...

Bent but not broken,
Robin

Friday, March 29, 2013

Body image issues

I need to have a girly moment here...
 
This might sound crazy, but I think my spine may be sparking a bit of an identity crisis.
 
I've always loved dressing up and buying clothes. It is so annoying to go shopping and pick up things that I love, only to find out when I put them on that they look terrible on my body. Therefore, I no longer know what I like, because I no longer know what size I really am or what shapes look best on me (if there are any..) I am actually a 5'9" girl squashed into a 5'5" girl's body. It's frustrating. I hate shopping. I hate trying on clothes.
 
Things I would like to wear without feeling self-conscious about something;
 
I would like to wear a flowy top without it awkwardly hanging down from my shoulders in the back and making it look like I am fat and have no butt.
 
I would like to wear a high-waisted skirt without the waistband getting all scrunched and hanging crooked on my hips.
 
I would like to wear an open-back dress without exposing my rib hump and feeling like Quasimodo.
 
I would like to wear a bikini without worrying about my lopsided waist or my ribs sticking out.
 
I would like to proudly wear a bodycon dress.
 
Hopefully the surgery will not only lessen my pain,
but also help with the body image issues.
 Blah. I know everybody is self-conscious about something.
I'm not the only one.
 
Bent but not broken,
Robin
 
P.S. 33 days!
 
 

Friday, March 15, 2013

May day!

It's done. I scheduled it. May 1st is the day. Now I get to deal with my nerves for the next 46 days. And damnit, if I'm not just a little bit excited... It'll be nice to someday be mostly free of back pain and to stand straight and tall, which I have never been able to do. It seems scary now, but I hope it's worth it in the end.


Bent but not broken,
Robin

Tuesday, March 12, 2013

Ignorance is not bliss


One night a couple weeks ago I was having a really hard time getting to sleep because I was in so much pain. It was making me super stressed out and upset, so I called my sissy-poo for some support. I cried to her on the phone about how all this surgery stuff is so overwhelming and that I just didn't know where to start. She offered to help me put together a surgery "To Do" list. She made a Google document and e-mailed it to me, and it has actually really helped motivate me to start getting my shit together. I've spent the past couple days making phone calls on my lunch breaks. I talked to the nurse at my surgeon's office and asked her some questions. I found out my in-hospital recovery will only be 3-4 nights, not an entire week, which is a relief. And my out-of-work recovery will be a minimum of 8 weeks. She also had their financial department work up some numbers for me, and I found out that after my insurance I will only be paying a maximum of about $4,800. That is SO much less than I thought it would be! I thought I would owe like $20,000 and be in debt for the rest of my life. I really feel a lot better asking questions and getting answers than I did worrying about it and trying to come up with things on my own. Ignorance is not bliss. I have been in a ton of pain lately, to the point where I now need to take TylenolPM just to fall asleep at night. I don't want to put this surgery off any longer than I need to. I think want to get it done and over with soon. Fuck waiting until September, and fuck being in pain all the time. If I'm going to be in pain, I might as well be healing and not just sitting here getting worse, right?

Bent but not broken,
Robin

Sunday, February 10, 2013

Diagnosis


I'm a 25 year old female with kyphoscoliosis. I was diagnosed at age 15 with a scoliotic S-curve (I don't remember the degree of my curvature). I was told by my doctor that I was too old for a brace, and that my curve wasn't severe enough to require surgery. He told my mother that we should just keep an eye on it. For about 2 years I got an x-ray every six months to check out my curve. Never got worse, never got better, so my mother decided she didn't want to keep putting me through pointless hospital visits and we stopped getting x-rays.
I remember having problems with it all throughout high school. There were a couple times that I had to get a doctor's note to sit out of gym class for a couple weeks because my pain was so severe. One of my best frenemies took to calling me "Hunchy", and my self esteem started plummeting.
For the past few years I have tried to ignore it, but my pain keeps getting worse as I get older. I have pain in my neck, shoulders, upper, and lower back almost all day every day. I'm not comfortable standing, not comfortable sitting, and only sometimes comfortable laying down in certain positions.
I hate how I feel, and I hate how my body looks, so in early January I made an appointment with a spine specialist for new x-rays, and to discuss treatment options. I was told my largest curve was at 36°, and prescribed physical therapy to reduce my amount of pain. I agreed to the physical therapy, but was unhappy with my diagnosis and requested a referral to a spine surgeon.

x-ray of my 36° scoliosis curve

After a month of once-a-week physical therapy appointments, my pain wasn't getting any better and I was frustrated. I called to make an appointment with the surgeon. At my appointment, they took some new x-rays before I met with the doctor. When the doctor came in, he asked me if I was only seeing him for my scoliosis. I said yes, and asked why, and he told me "You don't only have scoliosis. You have a condition called Scheuermann's kyphosis. Is this the first time you have ever heard this?"

.....What? How is it possible that I had gotten at least 8 x-rays as a teenager, and 2 recent x-rays which were looked at by a spine specialist, and NOBODY NOTICED THAT I HAD THIS CONDITION. My mind was blown. And suddenly everything made sense. All my pain made sense. Apparently my kyphosis measures 87°, which is more than double what a normal spine should be (between 20°-45°), and it is caused by the actual shape of my vertebrae. Mine are wedge-shaped, instead of square or rectangular, which causes them to fall forward on each other, and causes my spine to curve or "hunch" forward. Since my "natural" position is curving forward, I over-correct with my lower back in order to stand up "straight", which is what causes my exaggerated posture and my outrageous back pain.

x-ray of my 87° kyphosis curve

I was told my condition is fairly rare, quite severe, and will continue to degenerate over time. Which means I require spinal fusion surgery. I don't know quite how I feel about this. I have yet to settle on one emotional conclusion. I'm relieved that I finally have a real diagnosis and a plan for treatment. I'm terrified because I've never had surgery before (not even wisdom teeth!) and this one is fairly serious. I'm excited to finally have a straight spine, to love my body, and to no longer deal with excruciating pain on a daily basis. I'm nervous about how much it will cost me, how long my recovery time will be, and having to re-learn how to perform daily tasks.

So many feelings, so little time to sort through them all. I need to do some research, figure out stuff with work, part time disability, and my insurance, and then call to schedule my surgery.

I made this blog so I can document this process. Partly because it will help me sort through my thoughts and come to terms with everything that is about to happen to me, but mainly because I know how hard it is to find good resources about this online. If someone else with this condition finds this blog and finds some comfort in it, then my mission is accomplished. :) More soon!

Bent but not broken,
Robin