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10 Annoying things about wearing “The Collar”

10 Sep

The Collar…it’s become a permanent accessory, I was trying to think of the one accessory that I wear 24/7 now and quite honestly, there isn’t one, except for my equally awesome Biomet Spine Fusion Bone Stimulator.

I know, I know…all so jealous, but I must say, I’ve grown accustomed to these two marvelous accessories.  I say that without a hint of sarcasm because I have a strong expectation that these two accessories are increasing my chances of a full recovery.  Nevertheless I have come up with my own…

TOP 10 ANNOYANCES about “The Collar” (and bone stimulator)

10. The Collar clashes with all but 2 outfits

9.  Any time I tell a man that I am wearing a bone stimulator, he laughs.

8. I can’t drink out of a regular cup

7. I can only gaze down, but can’t actually see my feet

6.  When I brush my teeth, toothpaste and what you normally spit out ends up all over the collar pads.

5. I constantly drop food or liquid in the collar that gets stuck or stays wet between my chin and the collar pads.

4. The beeping sound on the bone stimulator that signals that one of the pads has come away from my neck wakes me up at least twice a night.

3.  The collar requires that I sleep almost upright in order to get any amount of sleep

2. The back of my hair is never dry because it is always in the collar

1. I haven’t been able to wash or comb the bottom half of the back of my hair since August 16th

Annoying as it may be, The Collar is forcing me to move at a slower, more intentional pace.  Here’s to hoping that what I have learned thus far really sticks on the back side of my recovery.

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Back to Square One

7 Sep

Yeseterday was filled with frustrations and humbling moments as I realized that when I am finally released to get back to any type of workout, that return is going to be incredibly painful.  I have been trying to walk a few miles each day, if for nothing else, to have something else to look at and to enjoy the fresh air before I go completely nuts from being inside all day.

I dropped something in the bathroom and am not supposed to lean forward at all (you have no idea how many times I have leaned just from habit…they probably should’ve extended my hard collar to a body collar to avoid this mistake), so I squatted down to pick the item up and hit the doorknob with my shoulder really hard.  I screamed, not a pain scream, but that kind of frustrating scream that sounds like, “What the hell!  I am so OVER this stupid collar, and being locked up, and not being able to do anything!” – you know, that kind of scream.  That was my cue to get out of the house immediately.

I had no place to go and no one to see, but I needed to get out.  It was such a beautiful day and I was feeling “adventurous” (intrepretation = going to walk a path I normally run to see if I can get up over this massive hill).  I start marching up our street towards this massive hill that I normally run with great ease (not fast, but with ease).  This was my test – can I at least walk this hill now that I haven’t done any form of exercise in 3 weeks (yep, 3 weeks).

Humbled, but not defeated, I made it up and over the hill (TWICE since I took the same route back).  I had to stop about every 5 steps for a break. WOW – this is what I have been reduced to, walk, pause, walk, pause.  This is hard.  I can’t believe how quickly my fitness level has declined.

Back to square one! Yep, so it seems, that is where I will start.  All of a sudden, I will have to start slow, with modifications and progress slowly.  This is not a place where I am comfortable.  While I don’t have a problem giving this advice to others,  I am not used to take anything slowly.  The teacher will now be the student.  I realize that it is about time to think about daily meditation and doses of daily affirmations and small goal setting.  It will be a long road before I am going at 110%, but perhaps this was the test I was meant to be given.  For so long I have been striving to achieve a better balance in my life, maybe this is that time.  Now is the time to make those life changes so when I come out of my recovery on the backside, life is more balanced.

I often move so quickly focusing on what needs to get done (I am a doer and giver) instead of simply “being in the moment”

Last night, I had the rare opportunity to be alone with my son.  We spent 45 minutes taking turns reading a book together.  At the end my son said, “Thank you mommy for reading with me.  Can we do that again tomorrow?”

Everything in life happens for a reason…I have been waitiing for the storm that is my recovery, when all I need to do is learn to dance in the rain.

 

Kids don’t lie.

5 Sep

The long holiday weekend had such beautiful weather and Saturday morning I was cleared to go out and starting walking ~ nothing fancy or crazy, but I will take it.  Being stuck in the house all day, everyday, with no one to talk to, feeling stuck and frustrated was really getting me down.  I could feel myself wanting to crawl out of my own skin, becoming increasingly more frustrated that I need so much help to do the simplest of tasks.  I can tell you this now, all of us take for granted being able to wash our own hair, being able to open a pill bottle to take your medication, take a bowl out of the cabinet, being able to take warm clothes out of the dryer or being able to get in a car and get yourself where you need to go.

Saturday marked a day of pure frustration that seemed to just consume me.  I got out of the shower, got myself dressed, picked up my keys and was determined to drive myself to the store to do the grocery shopping.  I was tired of feeling helpless…though let’s be honest, I am not supposed to push a shopping cart, pick up anything over 5lbs or reach over my head or bend forward, so I was obviously being completely irrational because I wouldn’t have been able to do the shopping on my own had I actually made it to the store without killing myself or someone else.  Rational or not, I was tired of not being able to just simply “GO” – where?  It doesn’t matter! for how long? until I am done!  I was a caged animal needing to break out.  Don’t worry, I came to my senses and waited for Mark to come with me to the grocery store.  Mostly bexause I wouldn’t have made it two blocks without crashing. 

The entire day was filled with so many frustrating moments where I felt like I was going to explode.  I imagined myself throwing my hard collar into the street and running over it over and over again…I suspect that once I am cleared to bid my collar farewell,  someone will find it flattened out in the middle of our street.  I have no problem admitting that there are so many moments when I am difficult, but I am okay with that right now as this is a difficult time for me.   At one point, Mark said he understood that I was frustrated…I think that there was steam emanating from my head.  Understand?  Really, he understands?  How is that possible!  He has never had surgery.  He has never had his neck sliced open.  He doesn’t have to ask or wait for help for almost everything.  He understands?  Those who know me; know me well enough to know that was just adding fuel to the fire. 

Saturday ended with me getting a pill stuck in my throat and I couldn’t get it to move in either direction no matter what I did.  No one can hit my on the back and the heimlich manuver would undoubtedly land me back in the hospital.  I started to cry out of pure frustration and exhaustion with the realization that I still have weeks to go before this gets better.  After 10 minutes of struggling and gagging, I finally vomit all the water and the pill all over the living room floor.  I feel relief but so defeated.  I am done for the day.

Sunday was a blur.  I can’t actually remember what we did for most of the day.  I only recall that we made it to the pool.

Monday was my first day out for an actual walk.  My daughter and I walked to the pool and while I would have loved to have walked longer as it was such a nice day out, but it was nice to walk and talk.  It is rare that we get those quiet moments and it was nice to just listen to her share about kindergarten and how much she is enjoying her class and her new friends.  The pool was filled with neighborhood families and my daughter was having a blast.

I was just sitting under the shade watch and play, but as I am sure you can imagine, it’s difficult to be inconspicious when you are the only person in the pool wearing a hard collar and have two wires hanging from her neck attached to some electric pad attached to her dress.

A little boy, he must have been 7 or 8 was pointing at me and asking his dad about my neck.  His dad was trying to explain to him about my neck and then finally turned to ask me what happened.  I was explaining what happened and about the surgery and the boy asked, “Can I see it?”.  The dad said it was okay.  I opened the hard collar brace and showed him the scar and the two pads connected to my neck down to the bone stimulator.  The boy turned to his dad and said, “See Dad, I told you it was going to look like someone tried to chop her head off.” 

KIDS DON’T LIE!  All the adults who has seen my scar have been downplaying how bad it looks (duh, I see it everyday, I know it looks bad).  But kids, they don’t lie.  They give you the raw honest to go truth.  I have to say, his honesty was refreshing and actually made me laugh.  If you ever want to know the god honest truth, ask a little kid.  They will give it to you unfiltered and raw.

First 5 Days Post-Surgery

30 Aug

The first five days seemed like the longest and if you’ve read my first two posts, you’ve probably already figured out that there was no way I was being released from the hospital on Saturday.

It all really seems like a blur and if you’ve been in the hospital for multiple days, you know that the actual days start to get really blurry ~ you sleep whenever, you’re awake at odd hours and someone, be it a doctor, nurse or nurse’s assistant, someone is waking you or checking on you every 2-3 hours to take vitals, get blood, give you more medication.

Mark & the kids came to visit on Saturday morning; it was obvious they were scared.  They both stood back close to Mark, one on each leg.  His visit was short as the kids were not thrilled about being in the hospital and I was definitely not looking so great just 24 hours post-surgery.

I digress for a moment because while the surgery and my recovery has been challenging on me both physically and emotionally, when you have a family, it takes its toll on them too.  My kids, ages 5½ and 7 are not used to seeing their mom immobile and needing help with some of the simplest of tasks.  They are scared to talk to you, come close to you and touch you.  It takes time for them to adjust and a 3-month recovery seems like an eternity when you are that young.  Equally taxed is a spouse.  Even if your spouse is used to sharing the load, it is different when they have to carry the entire load PLUS help me with everything.  Mark packs lunches, does baths, laundry, puts dishes away, reaches for anything I can’t do, runs errands, gets the kids to school in the morning, coaches soccer all while still juggling his full-time job.  I know that parents have all had to take on a heavier load for periods of time, but rarely does that extend out for weeks and weeks.  I suspect that by the time I am able to start taking on some of the load, my entire family will need a well-deserved break.

Saturday was eventful for a few reasons:

  1. I found out that my bladder was temporarily paralyzed from the anesthesia.  What the heck does that mean?  It means that I could not feel any urgency to pee!  At around 11(am) my nurse (awesome, his name was Christopher) came in to ask if I had gotten out of bed yet – NOPE, not yet.  He asked to check the catheter – PROBLEM – it was already out.  He asked if I had been to the bathroom yet – NOPE again.  Concerned, he took and ultrasound of my bladder….low and behold, nearly a liter full.  Out of bed I go and off to the bathroom.  It is very weird to try and go to the bathroom without feeling any urgency.  From then until I was released, the nurses had me on a regular schedule to visit the bathroom every 4 hours.
  2. I did my first hallway cruising…with a walker and a nurse side by side.  Holy crap!  Just 3 days prior, I had been out on a 10½ mile run and now I was struggling to walk the halls of my hospital room floor.  Humbling! Seriously Humbling.  I was asked to cruise the halls several times a day.
  3. I tried to drink a cup of Peets coffee via straw and take sips of water.  I had been challenged ever since the surgery to swallow even my own saliva.  I was given a suction tube to remove saliva from my mouth.  I Imagemanaged 3 sips of coffee and 3 sips of water but gagged every single time.
  4. I developed a low grade fever of 101.5 and was at risk of developing pneumonia…just what I need.  I get this really awesome little lung machine to exercise my lungs and I have to stay upright to sleep so the fluid doesn’t settle in my lungs.

Not so surprising, my doctor decided to keep me in the hospital until Sunday.

Sunday my doctor came in first thing in the morning and took me off the IV drip, so now it was up to me to intake enough fluids and soft foods, plus be able to take medication in pill form up until I went home.  Cool – no more IV, I can get up and move around and FINALLY – take a shower!  I felt so gross and was so happy to get into a shower…until I actually got into the shower.  I have to keep on my lovely hard neck brace while showering and I am not allowed to lift my hands over my head or bend forward.  This makes showering a very interesting balancing act.  The shower was definitely the highpoint of my day. Why?  Well, without the IV, I was struggling to stay hydrated as I could barely swallow sips of water.  Over the next 24 hours I only managed to get down ½ cup of water and no other food or liquid.  I couldn’t get down pain medicine either.  Each time I tried to swallow, I would start gagging and the pill would come back up.  This definitely was not going to be good and I wondered how quickly I would worsen or show signs of dehydration if I am sent home without being able to drink a minimum amount of water or take pain medicine.

I am still not sleeping well as I am having problems swallowing or sleeping with my mouth closed.  What’s worse, with my mouth open when I am sleeping, my mouth is drier than ever, but I still can’t swallow liquids.  To add more fuel to the fire, someone is always waking you or checking on you to take your vitals, give you medication, trying to get you to eat or reminding you to go to the bathroom.  On top of the problem swallowing, my trapezius muscle on the left side feels like it is on fire.  Why?  Well they move this muscle during the surgery; guess that would do it.  Apparently this pain is really common with this surgery.  I know that in the end, it will be worth, but wow wee, my burning traps keep on muscle relaxers around the clock.

Monday morning is here and I am now 4 days from my surgery and wondering if I am going home.  My doctor comes in and announces that I am not going home.  My water intake was too low and my inability to swallow pain medication means I am not going anywhere today and I am back on the IV drip.  Also, he made the decision to start me on 3 rounds of low dose steroids to reduce the inflammation so I will be able to swallow.  I have a genetically narrow opening, so the inflammation from the surgery is enough that it is next to impossible to swallow.  The steroids are meant to reduce the inflammation so I can swallow and hopefully get my voice back.

Tuesday late morning ~ 5 days post surgery and guess what – I HAVE A VOICE!  Wow, swallowing is still sore, but I can swallow water!  Yes, that means I get to go home today!  I am so excited to be able to go home.  My sister and dad come to the hospital to help home and settled.  Now remember, I can’t wash my own hair, so I use this opportunity at the hospital to get some help from my sister.  I am starting to wonder how I am going to manage at home when I am by myself.  My doctor removes the bigger bandages from my incision area, but the remaining bandages need to stay on until I see the nurse to remove the ends of my dissolvable stitches.

Five days in the hospital and pretty much a great experience at Marin General.  I had some really amazing nurses (I had other nurses and assistants that were not very nice or helpful, but that could’ve been my experience at any hospitals).  My two favorite nurses were Christopher and Michelle (but French spelling); both were absolutely amazing senior nurses who were thoughtful, knowledgeable and incredibly helpful.  The physical therapist, occupational therapist and the nutritionist were all also wonderful.  The nutritionist came in to see me daily since I hadn’t eaten any food while in the hospital.  She gave me some really helpful tips on making sure I take in enough liquids to meet all of my nutritional needs during my recovery.

Phase One, which I have labeled as Hospital Recovery is over.  Phase two ~ home recovery is next.

The Surgery

27 Aug

August 17, 2012 was the surgery date.  I was so exhausted on this date and the days leading up to the surgery were filled with stress and anxiety over trying to wrap things up, worrying about work and worrying about how everything was going to get done at home and with the kids. 

Given that I was only expected to be in the hospital overnight, I hadn’t planned or arranged for help with the kids beyond Friday…MISTAKE #1 – read on to see why.

So the actual procedure was 3 Level Anterior Laminectomy with removal of bone spurs at C5.  I was to be fused from C4-C7.  My surgery was expected to take about 4 hours and was scheduled for 7:15(am).  This is SO lucky for me as the longer I was awake without food, coffee or water, the grumpier I would become.

I had to be at the hospital at 6(am), so our awesome neighbor Michael came and stayed at our place so the kids could keep on sleeping.  I check into the hospital (lucky me, I pre-registered the day before) and am immediately taken upstairs to be prepped for surgery.  Two awesome and surprisingly cheerful nurses at Marin General started taking blood, starting an IV and got me wrapped up in some warm blankets…those flimsy hospital gowns don’t offer much in the way of warmth or comfort.  In came the neurologist who would be monitoring my muscles and nerves throughout the surgery…I would have loved to have been observing my own surgery to see how my body responded throughout the procedure.  Next came the anesthesiologist (whom I had spoken to the night before) and finally my doctor just to say good morning and give a quick recap of the procedure and how he intended to cut the incision (wait until you see the pictures folks.,.holy cow).

I said goodbye to Mark as he wished me luck.  All I could think about was how badly I needed to pee, but they asked me to wait because it is easier to insert a catheter with a full bladder.  Guess what?  The urgency to go to the bathroom is even stronger when you get into a cold surgery room and are transferred to an equally cold and narrow surgery table.  There were a total of 7 doctors/nurses present for my surgery.  All I remember is them putting the oxygen mask on me and out I went.  I don’t remember anything beyond about 30 seconds after the mask was on.

ImageI remember hearing voices, doctor & nurses, lots of voices.  I heard them saying my name, but I couldn’t open my eyes.  I couldn’t move my body.  Apparently this was around Noon and I was in recovery.  My surgery only took 2 hours.  The doctor said that the surgery was easier and cleaner than he expected.  My time in recovery was double the amount of time I actually spent in surgery.  I don’t remember hearing anything after the voices and I apparently was transferred to my room at about 1(pm).

I opened my eyes and saw the clock in front of me for the first time: 3:40(pm).  Holy cow, how long was my surgery, how long had I been asleep?  Where is everyone?  Why isn’t anyone in my room?  My importantly, I can’t talk and I am struggling to breath.  I started to panic and couldn’t find a button to call for the nurse.  There was another patient in my room and she had a lot of guests and they were very loud, so no one could hear me.  I am still struggling to breath and I can hardly move.  Finally, I must have pressed the correct button because a nurse came in?  I can hardly whisper so why the heck isn’t the nurse coming closer to hear me.  Surely there have been other patients in this hospital who have had this surgery!  In fact I am certain of it as my doctor does this procedure several times a week.

Finally she understands – please raise my bed so I can breathe.  Bed is up and I can breathe shallow, quiet breaths.  I ask the nurse if anyone is waiting to see me and she says no.  WTH?  Everyone should be waiting to see me, right?  Right?  Wrong!  Why?  Everyone had been at the hospital for hours and they all came into my room and saw me, but I didn’t wake up.  That still counts, but I am thinking I would like to at least see Mark before the end of the day.

When I looked down, I saw that had my legs wrapped in these plastic wraps connected with tubes that would inflate and deflate regularly.  These were put on my legs to prevent my muscles from atrophying too quickly from being immobile for so long.  Image

 Also, the catheter was still in and I was on an I.V. drip lots of little bags of fluid…pain medicine and muscle relaxers.  The nurse handed me a button that I could press every 10 minutes to dispense pain medication…guess what, you better believe I was pressing that button every 10 minutes.  I spent the rest of the day in bed, in and out of sleep, wondering how the heck I was going to be released the next day.  The surgery was over and now I was on to the recovery.Image

The Diagnosis

27 Aug

For those of you who have known me over the past 4 years, you probably remember me teaching with two wrist braces, no weights and going through the motions.  It wasn’t until July of this year that I learned that I have spent years of one misdiagnosis after another, tracing all the way back to 2000. 

After spending 9 months with nagging shoulder pain and after seeing an SF Orthopedic doctor as well as a physical therapist, I decided to see my husband’s doctor at Tam Orthopedics.  Within 5 minutes, he ordered two MRIs – a new one for my nagging left shoulder and the other of my cervical spine.  He also referred me to the cervical spine specialist in their practice.  I already knew that the doctor won’t go into a diagnosis or treatment without a new MRI, so I didn’t question the spine MRI or the referral, but I walked out thinking to myself, “I don’t have any pain in my neck, all of my pain is in my shoulder and forearm.”  Three days later I had the two MRIs and 5 days later, on July 3rd, I went back to see both doctors to get the results of my MRIs.  I saw the spine doctor first (I now realize that this was likely intentional…hit me with the bad news first and save the good news to soften the blow).

The diagnosis ~ severe spinal cord damage and degeneration.  This was causing the pain running down my arm; causing numbness is my hands and feet.  Holy cow, I don’t have Raynaud’s (misdiagnosis #1 back in 2000), this is all stemming from spinal cord damage.  The knot I kept getting under my scapula and pain in my traps…all my cervical spine.  As I am sitting in the doctor’s office feeling shell-shocked, I am wondering why no other doctor I have seen over the years has caught this until now. 

How did this happen?  Based on the damage, it looks like I took a major blow/hit to the head/neck.   We trace it back to when I was hit by a car back in 1996.  The ER doctors took a lot of x-rays and I eventually had to have knee surgery on both knees based on the impact and how I hit the pavement, but my cervical spine was missed.

Recommended treatment?  Surgery, 3 level anterior fusion with bone grafts from the donor bank.  Listening to the doctor describe the surgery, it sounded scary and intense.  The alternative?  Modifications of everything: no amusement park rides, no outdoor cycling, no driving without a neck brace on, no lifting anything heavier than 25 lbs and no lifting overhead at all.  The risk? If I take a fall, I have an 80-90% chance of permanent paralysis.  If I have the surgery, the recovery is about 3 months and then I can start working out again modified and by 6 months, I should be fully recovered provided the surgery goes well. 

Now for the good news!  Should MRI shows prior slap tear and dislocations, but the rotator cuff is completely intact.  All that is needed is 3 months of shoulder PT, but not until after the cervical spine surgery….should I chose to have the surgery.

My case went before a panel of surgeons, neurologists and physical therapists and the consensus was clear: 3 level fusion was the best course of treatment.  I spoke to another doctor and two prior patients and within a few days I decided that the surgery was what I wanted to do.  I am going to be on this planet too many more years to try and be that careful for the rest of my life.  I want to be able to do what I love, pick up my kids, take them to Disneyland, Legoland and Waterworld.  I want to be in Tahoe with them for ski week next year.  I want to work on my overhead squat again.  I want to be able to do simple tasks like putting dishes away without asking for help.

There is a downside: the damage that has already been done is pretty much irreversible.  I have lost fine motor skills such as being able to open jars, door knobs and button small buttons.  The upside: once the surgery is over, the damage will not get any worse.  If I elect not to do the surgery, the next thing to go would be loss of balance and then loss of control over bowel function.  Within 5 years, I would display the same symptoms as someone with MS.  With all this in mind, I would be completely nuts not to do the surgery.  I know myself too well to know that I would rather do the surgery and shift my focus to the recovery.

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