A long hard road.....

After I got out of surgery on June 7th, the surgeon and his team came in my hospital room to talk to me. The surgeon told me that my fracture was worse than he originally thought, and that he wanted to make clear that I had long hard road ahead of me. I thought I understood what he was saying, nodded my head, and cheerfully said I'd do whatever it took to get better. Looking back, he must have thought I was so foolish, I had NO IDEA how hard this was going to be.

Long hard road indeed! I am still in a lot of pain, I still sleep on my right side, though from time to time I attempt to lay on my left side for a bit - it doesn't last long due to the pain. I do home exercises religiously but still have trouble with range of motion, pain, and day to day inconsistencies. One day I feel pretty good, the next day my arm is killing me. Eight months, I thought by this time my shoulder injury would be a distant memory, but it isn't.

I had a follow up a few weeks ago and they've put me back in Physical Therapy because I was losing range of motion. So, back to 2x per week. I have more pain now than I did a few months ago, which makes me worry about AVN. They told me in the beginning that if I develop AVN I will start experiencing more pain again. So far, doctor says xrays don't show any obvious AVN but they won't know until about the year mark for sure. So, it's a waiting game.

In the meantime, everything is harder than it use to be. I am working on my thesis, but can't give it 100%, focusing (and typing) for any length of time is difficult. But I am plugging away at it and eventually it will be written. I have chosen not to give myself grief over this, as long as I am moving along in a forward direction, I am content.

All in all my pain fluctuates from day to day, some days are not so bad, and other days I am very aware of my injury. My attitude also fluctuates, for the most part I am a positive person and I try to focus on how far I've come and all that I can do now. However, I do have moments where I just feel so sorry for myself. This injury sucked. Recovery sucked. Eight months out, it still sucks. Staying busy and active helps a lot, doing things I use to do, even if I have to modify it, makes a big difference to my soul. I will continue to work hard and to hope for the best - I have heard from people who had similar injuries that it takes a good year and a half to two years before you start feeling "normal" again. So, I hope that is true!!

Back on the bike!!!!

January 27th was a monumental day for me. Seven months and 29 days of torture not being able to ride my bike. I still have a lot of issues with my shoulder, and of course I'm scared to death of falling and hurting it again. So, I decided my first time out would be on a flat canal trail with a friend. We took it slow and I was only able to do a few miles because the position of the arm while holding the handle bars for any length of time is difficult. The good news is that we geocached along the way - so I got to stop and take a break every half mile or so. Here is a video of me taking my first spin around the parking lot, forgive me for the audio - we didn't have a script, this was improv.

"Recovery is not a team sport"

I was watching Grey's Anatomy on Netflix today and this quote literally brought me to tears.

After a trauma, your body is at its most vulnerable. Response time is critical. So you’re suddenly surrounded by people—doctors, nurses, specialists, technicians—surgery is a team sport. Everyone pushing for the finish line. Putting you back together again. But surgery is a trauma in and of itself, and once it’s over, the real healing begins. It’s called recovery. Recovery is not a team sport. It’s a solitary distance run. It’s long. It’s exhausting. And it’s lonely as hell.

The length of your recovery is determined by the extent of your injuries. And it’s not always successful. No matter how hard we work at it. Some wounds might never fully heal. You might have to adjust to a whole new way of living. Things may have changed too radically to ever go back to what they were. You might not even recognize yourself. It’s like you haven’t recovered anything at all. You’re a whole new person with a whole new life.

– Meredith Grey, Grey’s Anatomy

Pain and Progress - Weeks 1 - 12

Week 1 - Unable to do anything on my own really, can't shower, can't dress, hard to get up and down out of the chair without help, on so many meds a little dizzy. I even need help pulling up the left side of my pants after using the restroom.

Week 2 - Much better than week 1, but still in a great amount of pain, still can't shower and dress myself, but am staying home alone much more.

Week 3 - Still in a lot of pain, weaning off the meds but still taking a lot. Finally feeling like socializing a bit, getting out of the house, going out to dinner. I usually only last a few hours before I want to go back home so I can rest. Am starting to really miss my life, my bike, etc.

Week 4 - Still in pain, still on meds, trying each week to take less and less. Started at home passive stretching exercises at direction from my surgeon.

Week 5 - Almost off my pain meds, only taking 2-3 oxycodone per day (a far cry from the 24 per day that I started with on day 1. I try to only take one before bed so I can sleep and then during the day take only if needed.

Week 6 - I am driving a little bit, started out around town, still wearing my sling, luckily I drive an automatic. I am back at work and can only handle half days, am in a great amount of pain but it's a catch 22, if I take meds I am unclear and loopy, off meds I am in pain. Either way, I am not the employee of the month. Started physical therapy - only passive movement, the physical therapist moves my arm around and I don't activate my muscles. VERY painful, but I know it needs to be done so I suck it up and do what I'm told. Home exercises are tough.

Week 7 - No more oxycodone (YAY!), Dr. prescribed me vicodin to transition off meds. Only taking 1 prior to physical therapy and 1 every night before bed. (read side effects of acetaminophin which is in vicodin, kills your liver if you take too much, so I am being super careful to stay at the very low end of dosage!)

Week 8 and 9 - still taking 1 vicodin to sleep - am in a lot of pain throughout the day but want so badly to be pill free that I just suffer through and go to bed at 7pm taking 1 pill so I can sleep.

Week 10 - off meds all together. Still pain, don't get me wrong, but I can get by.

Week 11 & 12 - Physical therapy is really helping. My range of motion is increasing and the PT got my arm to 116 degrees today. When I first started I was only at 80 or so. Making progress.

CHECKLIST

I named this post "checklist" because there were a lot of things I wish I had known prior to my surgery. I am sharing a list of things to think about, it's a long list, and you may not need all of these things but I hope some of them help you plan proactively, instead of reactively like I did. Keep in mind this advice is coming from a 42 year old woman, so you might want to modify some of it if you are a guy, but keep reading, most of it doesn't discriminate :)


1) Bathing and Dressing -

• Prior to surgery, buy yourself a bath seat (shower chair) and a handheld showerhead. Trust me on this, you'll need both.



• I was unable to bathe myself for the first few weeks , so a home health worker came over and helped give me baths. I still ended up getting a skin infection called folliculits because she would come over and help me clean up and get dressed once a day, which left me wearing the same clothing for 24 hours until she came back the next day. Wearing too much clothing causes you to sweat and of course sitting in the same position all day every day doesn't help, so I was instructed by the doctor to just wear a loose night gown with no underwear for the first couple of weeks to prevent this from happening again and also to try to give myself a little sponge bath with baby wipes or a wash cloth and antibacterial (Dial) soap once or twice a day in addition to the showers I was getting. This helped a lot and I felt a lot better when I started doing that. I obviously couldn't reach a lot of my body but did what I could and it helped. The home health worker is a great idea even if you don't want someone bathing you, they will help you do laundry, tidy up, bathe, get dressed, fix food, etc. Trust me, if you live alone you'll want the help, don't burn out your family and friends in the first few weeks because you are going to need their help for a long time after!! Have your doctor write a prescription for it and your health insurance should cover it, just make sure you go with a company in your network, I made a mistake and ended up with out of network, which ended up costing me more money but insurance still paid 70%.
  



• As far as clothing is concerned, I cut the left strap on a few of my sports bras and stepped into them and just had the strap over my good shoulder. As for shirts, buy a few large loose/stretchy shirts and put on your bad arm first then put your head through the hole and then the good arm goes through last. The other option that I tried on week one out of the hospital and prior to my surgery was cutting the shirt from neckhole to sleeve on the bad arm and stepping into it and just having the shirt on the good shoulder side.



• Buy elastic waist bottoms, it will be a while before you are allowed to rotate your arm internally in order to zip and button pants.



• For girls, sleeveless stretchy sundresses and nightgowns are the best!

2) Slings - buy a couple extra slings.

• My favorite was the sling from CVS, it was made of a soft cotton with mesh and padding at the wrist, as well as a cell phone pocket on the inside of the sling. These slings are easy to throw in the washer so you can wear a fresh sling each day.



• I did find that the neckt strap on all the slings were painful so I bought a seatbelt pad (just a few bucks at the auto store) to put on the sling strap. It was a bit bulky and stiff at first but I was able to have someone work it out, wash and dry it, and then it helped a lot, the extra padding was great. I would also sometimes just take a washcloth and wrap it around the velcro area on the strap so it wouldn't rub against my skin.

3) Washcloths -

• I bought a couple packages of baby washcloths, the thin really soft kind. I used them every day to tuck underneath my underarm to absorb the sweat and keep me dry. It took me a while to figure out that I could rub deodorant directly on the washcloth, then tuck it under my arm and I felt so much fresher. The last thing you want is skin on skin contact for a period of time, so do this and you'll be happy. I am 3 1/2 months post op now and never once got any kind of skin rash under my arm. :)

4) Sleeping - This is a big deal. The doctor casually told me that "most patients sleep sitting up for about 2 months". This is no joke, I "slept" sitting up for at least that amount of time.

• The first few weeks was straight up in a chair


• After a few weeks I moved to the couch and was able to pile pillows on one side of me, and just lean to the good side.


• After about 6 weeks I moved to a bed and piled pillows in the corner so I had support on both sides. Still sleeping upright, but much more comfortable.


• about 2 1/2 months I was finally sleeping laying down, but only on my good side and a little on my back.
  


• At 3 months I am still unable to sleep on my "bad" side.

5) Pillows - I bought a lot of pillows, hard ones, soft ones, one called a "boomerang" pillow. You'll need all kinds. I have a very soft down pillow to support my sore arm. The hard ones you'll need to stack and support softer pillows and the boomerang pillow was a life saver when I finally moved into the bed, it is shaped like an L and it's nice because it doesn't slip and slide.

6) Medicine - I was on A LOT of pain meds for the first few weeks. I bought myself a pill case and labled each section for a 3 hour time period, my father filled the pill case with the pills I needed for each time, and I was glad he did because I was so loopy that sometimes I couldn't remember if I took my pills for not. It's good to have someone else monitoring your meds.

A couple of friendly reminders:

• Any medication with Acetaminophen in it can be deadly if you take too much - my Vicodin had 750 mg of acetaminophen in each pill, and if you take 4000 mg in a 24 hour period your liver can die (some say only 3000 mg) but the instructions told me to take 1-2 pills every 6 hours as needed. If I had taken 2 pills ever 4 hours I would have been taking 6000 mg in a 24 hr period and I may not be here. Read the fine print on your meds!!
  


• Oxycodone caused me really uncomfortable constipation, if you are taking this add Mirolax to your daily list of things to take to keep you normal. You'll be glad you did!

7) Family and Friends - ASK THEM FOR HELP!!

• Don't be shy, when your friends ask if you need anything, tell them! I have a friend who comes over once a week (still at 3 months post op) to help me change my sheets and shave my underarm! In the beginning I was really careful not to put people out, and then at about week 3 I was calling all my friends and asking them to just come get me out of the house, to take me to dinner, or to the drugstore for something. I just needed them to help me feel like myself again.
  

The Surgery

Nine days after the accident I was finally having surgery, the delay was partially due to being ambulanced to a hospital in the mountains that didn't have orthopedic surgeons, and also due to the fact that when I was I could go home and see a surgeon in a few days, the doctor who saw me was booked up for surgeries for 6 more days and assured me waiting would not be a problem. My doctor had decided that he would do the ORIF (Open Reduction and Internal Fixation) and hope that the bones would heal, but discussed the high risk of AVN (Avascular Necrosis) which could lead to a future full shoulder replacement. The surgery took a few hours, I'm not exactly sure how long I was in but I had surgery scheduled for 7am and I believe I was being wheeled to a room by about 1pm (this was after waking in the recovery room and having to stay there for a while). The pain was unbearable. They had a nerve block in my neck, and I was getting Dilaudid and Oxycodone I think. The meds would sometimes help ease the pain, but I was never comfortable, and the first couple days were really tough. The pain would rollercoaster from a level of 5 to 10 and back and forth. They switched me off of Dilaudid and started giving me Lyrica which had good results, I only found out later that Lyrica is really a seizure medication so in the long run I had to wean myself off of them because it would be dangerous to just quit, however, it did help with the nerve pain so I guess it was a good idea.

Getting out of bed to use the restroom in the hospital was horrible. Every tiny movement was very painful - especially bending over and/or twisting my body at all. Sleeping was all in an upright position, leaning back was very painful. On the 2nd and 3rd day, I tried to get up and walk down the hall a little bit.

I was in the hospital for 3 nights, they originally thought I'd go home after 2 but they wanted my pain level to stabilize before letting me go home.

The Injury

On 5/29/2011 I was having the time of my life. I was on a weekend camping trip in Virginia, it was Sunday afternoon, and the weather was beautiful. I was on my second day of biking, and was going down hill on the Virginia Creeper trail. Going a bit faster than I should have been, I hit a rut in the dried mud, and that was the moment I knew something horrible was about to happen. My bike jerked to the right, I flew to the left, landed hard, and body surfed along the trail until I came to a stop. My left arm was underneath me, and the wind had been knocked out of me. I tried to move but felt excrutiating pain in my shoulder. I won't bore you with the details of the next few hours but the result was a fractured proximal humerus. I had no idea what I had gotten myself into.....