DORY- “JUST KEEP SWIMMING”

It has been awhile since my last post.  I concluded my last post with the topic of balance. I’m not ready to discuss balance because I’m currently in the process of learning how to apply proper balance into my life. 

The title of my blog site is imnotmyspine.blog   I had a very good friend ask me, “if you do not want to be your spine why are you writing a blog about your spine?” This was a very interesting question. As I pondered my answer, I realized that this blog is a tool to for me to vent, to share, to learn, to accept my current situation.  To discover the positive things in my life that are present because of my spine. Learn to do new things because of the changes I’ve been through.  I’m ok with my title. It works for me. 

For the past 10 years, I’ve been referred to as the lady with the bad back. I bought into it. In fact, I become my spine. I didn’t want to but it happened. Like Dr. Phil has said and I’m paraphrasing, there is a payoff for our choices. I realized my payoff was to remain a victim and people didn’t expect a lot from me.  I had the ability to selectively pick and choose what I wanted to do. Yes, chronic pain is constant but believe me, if there was something that I wanted to do, I would do it. Pain or no pain. 

Now I’m entering a new phase. Recovery from a spine surgery. (T2-S3-my entire spine is fused and I have 3 more surgeries coming up. My neck again and 2 SI joints), I am not new to this process but I must admit, this particular surgery is much more demanding. It requires a positive attitude towards every morning. There are no carry overs. If I had a good day yesterday, that does not mean that today will be the same. I must remain cognizant and patient with my movement and routine. Each day builds upon the last one. It reminds me of the saying, “Another day another dollar, a million days a million dollars”. Exactly. One Day At a Time and there is NO finish line. I believe in my heart, that one day I will be strong and fit. This surgery hopefully has given me back my active lifestyle that I cannot wait to enjoy. Grandchildren, vacations, work, gardening, walking my dogs, water and snow sports, and maybe even my passion of scuba diving. I am certified in ice diving, search and rescue, ship wreck, cave, deep water, night, nitrox, and a Master Diver. Talk about a bucket list, mines full.

I think THE MOST IMPORTANT thing anyone can do that is facing a long recovery of any sort is to not look at what we can no longer do but instead, laser focus on everything we can do and want to do. I do use self-discipline because as of today that does not come easy for

Me. It’s much easier to be depressed and negative.  For me and many others, it takes effort to stay positive and hopeful. Especially with set backs. I expect to have set backs so when they happen, I try to go with the flow. I also surround myself with winners.  I literally have a board of directors in my head where I’ve recognized strengths of certain people in my life. Over time, it’s easy to see who lives their lives in such a way that I aspire to. Each one of them brings something to the table. They don’t even know that they are on this board.  I have friends that offer the following:

  1. Good decision making skills
  2. Responsible financial spending/saving.
  3. Respect of all people. No gossip.
  4. Nature loving and living responsibly.
  5. Medical experience and sound advice.
  6. See’s the best in me and wants the best for me.
  7. Spiritually grounded and willing to share.
  8. Balanced living style. Work / play.
  9. Non-judgmental.
  10. Admire the way they take care of themselves personally. Dress, make up, etc.

This is a living, breathing, and changing list. When something occurs in my life, I go to my board of directors and determine who would be the best to call. I learned this trick years ago at work and it works well in life.

I’ll conclude by saying that my niece and nephew once said to me, when they were very little, “Aunt Donna, you’re just like Dory from Nemo. Just keep swimming. You always keep going and never give up.  They will never know, unless they read this of course, how much those words meant to me. To know that these little kids perceive me as a strong person who never quits has carried me through many a difficult day.  You never know is watching and paying attention. Wouldn’t it be nice to think that you could be on someone’s board of directors one day?

I NEED A NEW LIGHT FIXTURE IN MY BEDROOM


This is the ugly and old fashion light fixture that I’ve been staring at in my bedroom for weeks.  I cannot wait to get past this back surgery and the first thing I’m doing is buy is a new ceiling light fixture.  

My friend is going to paint this brown cave of a bedroom to a brand new pretty color that will be calming and relaxing. I happen to prefer a dark color for a bedroom. However, since I’ve been stuck in here, I would prefer a happy, fun color that would cheer me up.  Admittedly, this brown paint served its purpose but it  has worn me out. It’s never a good idea to lay in a room, depressed where the blinds can be closed and literally you can sleep 24/7.

 I have concluded that the color someone paints their room has some type of psychological impact on their personality.  

When I first painted this room, I was happy, busy at work, and couldn’t wait to collapse into bed. I loved to come in here, turn on the soft glow of my chandelier, play my favorite music, and slow down from the outside world.  I purchased an expensive and beautiful comforter with pillows. Isn’t it funny that as my life has changed, the effect of this color has changed. 

Why this topic even matters to me:

Originally, I was scheduled for surgery May 27. One week later, I received a call where my surgery date was moved to June 17. Youch. That was 3 weeks ago and I have another 3 weeks to go. Usually, I try to work a few hours, do something for someone else, or work around the house for a little bit to keep busy. 

Unfortunately, for now I have 2 conditions that are keeping me stuck in my brown cave. If I look “up” at all, (i.e., computer monitor)  my neck will lock and is excruciating. The only solution is to lay flat on back without pillow and “enjoy” staring at my light fixture. 

If that doesn’t get me, I eventually have to get out of bed because my neck needs a break. Upon standing, the fractured vertebrae and hardware plus all other degeneration stings and stabs me in my middle back. If I keep moving, it will ease up and I can do activities. 

Today, I planted vegetable seeds in my pots on my deck. I really want the Tower gardening but that’s down the road. It doesn’t cost a thing nor does it take much time to pause, sit down and listen to nature. 

I happen to live in a country setting where there are coyotes, goats, chickens, horses, honey bees, and lots of dogs and cats. I sit on my deck and choose to enjoy the sounds instead of feeling bad that I chose to let my garden go this year. I just couldn’t bring myself to calling people that either work for us or are friends and ask and pay them to weed and mulch. Forget about flowers, I’m just trying to have a presentable yard. As it turns out, it’s not that important. 

When we have a condition that we can’t control, I think it’s imperative to find things that we CAN DO instead of focusing on what we can’t do. It does take some thought and there may be some activities I choose that I can’t do after all,(beading. My neck locks up) but just keep trying new things. There are so many new hobbies to investigate. 

I like photography. I love walking around my neighborhood or even my own yard and take interesting pictures. I no longer have my  “things to do list” that must be accomplished in a timely manner” That attitude finds me sitting on a pity pot. Not very comfortable. It is easier to sit there but it just isn’t me. 

The answer is very doable. It’s called BALANCE.  We all know what that means but I’ve learned that the definition is different for each one of us. That will be my next post topic. Balance. I need to give this serious thought and come up with a workable definition for myself. It must fit my ability today. 

PERSEVERANCE

Ever since I was a little girl, my dad would remind us that the amount of effort that someone puts into something reveals their true character. Very true. He also would never encourage nor allow us (really) to quit something that we had committed to.  Be it a team sport, chores, personal projects. It’s funny, I never perceived my dad as being strict or unreasonable, just involved and loving. At a young age, I knew he was teaching us life lessons, albeit I didn’t know that at the time.

My dad was funny.   He would make a big deal over the small things and remained calm during the big things.  Allow me to explain:  

If I left a sip or two of milk in the glass at the end of dinner, look out. You finished the milk because we were taught not to be wasteful.  Or standing in front of the fridge with the door wide open as I was deciding what I wanted. Nope! “Shut the door Donna, electricity.”  Then we move on to the biggies. Getting in trouble at school, my dad would calmly call or come to  the school to learn the facts.  With a few of the incidents, I was in the right and my dad  went to bat for me.  He supported his daughter. Or the time, as a high school student I quit Varsity cheerleading. I think my feelings were hurt or something dumb. I showed up at home and told my parents what had happened.  Promptly, my dad and I were in the car driving back to the high school, walking thru the gym past the entire basketball team as we approached 3 squads of cheerleaders plus my coach. My dad stood behind me (offering his backbone) as I apologized and explained to the girls and coach that I regret quitting and could I please continue? Yes I could. My dad quietly left the gym and I didn’t quit. It was the best Senior year ever!

The title of this page is, PERSEVERANCE. One may wonder why I referenced my dad and the consequential life lessons learned?  

This bear was purchased for me as a birthday gift from my parents many years ago.  This bear’s symbol represents PERSEVERANCE.  They told me that tenacity and perseverance were 2 good qualities that I had and they hoped when I looked at the bear it would be a reminder that I am tenacious and have perseverance.  I now cherish this power bear.

{ Perseverance is defined:   per·se·ver·ance  noun.  Steadfastness in doing something despite difficulty or delay in achieving success.”his perseverance with the technique illustrates his single-mindedness”

synonyms: persistence, tenacity, determination, staying power, indefatigability, steadfastness, purposefulnes }

Those synonyms are exactly what I have used to get past obstacles that show up and the challenges to goals that I have set.  No matter the outcome(s), good or bad, if I care about something or someone – I’ve been known to act like a tenacious pit bull. Sometimes this asset can become a fault. There have been many times when the opposite of perseverance, tenacity, determination, and staying power have caused me harm.  I think the opposite to these are laziness, apathy, and idleness.  More about this later.

Seeing that my blog is focused on chronic pain of all sorts, for me it’s my spine, I will share with you,  everyday I pray to the Lord to help me remain steadfast in recognizing and having the courage to follow his will for me.  I cannot tell you how many times during the many discussions of all 7 (seven) surgeries, I prayed, should I remain persistent in be willing to try anything and everything I can to get better? Painful procedures were not the determining factor. Stated risks and side effects was not of any concern. Having remaining pain was a given because they told me up front I would not be pain free after surgery. 

Here were my questions in order of priority. PLEASE, NO JUDGING! I’m not claiming that these made sense nor was it logical to have based surgical decisions on the following:

1.  When will my 2 kids be back at college so they don’t have to deal with the ugliness of seeing their mom in a hospital. I never wanted to burden them; although they saw enough to know.  The last thing I wanted to do was worry them. 

2.  My mom offers to come take care of me and of course I want her here with me. I miss her and I love spending time together. When I have surgery, it’s almost undivided attention.

3.  My husband takes work off indefinitely to help me. He’s at home early and is so kind. 

4. My family and friends rally behind me, say prayers, and visit.

5. Is my pain that bad in both my back or neck?

6. What if they slip and I’m permanently altered or paralyzed? No, won’t happen to me.

7. Pain meds are hard on me, but they’ve assigned me my own pain med team so I’m fine. ( wtf)

8. I have a good dr.  He is respected and qualified so I’m in good hands. I never did my OWN diligent research. For the most part, I went on other peoples recommendations and trusted them.  They know more than me.

I noticed a pattern. When it came to the less important factors,(spilled milk) I placed more priority on other people and their needs.  It honestly didn’t occur to me that I placed my health, risk, and outcome at the bottom of the list.

I promise you, I relied on my ability to persevere and remain diligent on smiling and handling these surgeries with determinatio.  I had to convince everyone around me that this was the right thing to do and I’ll be fine. I can do this.  

I did it alright. When it was all done, hospital bed returned, parents back in FL, 3 mths into recovery I began to discover the change in my life style and I had to persevere or rather, endure loneliness, pain, and now what? I trusted family, friends, dr’s, etc. everyone but me. I recently realized that mentally and psychologically I didn’t go into the surgeries with a positive attitude. I didn’t care or believe that it would work. I was convinced that I had no choice. In fact, 3 or 4 of the surgeries I never should have done.  I recently discovered that the last one I had was done 100% incorrectly for my particular condition which has caused me to face 4 additional revisionsurgeries.

So, as I lay in this bed with my surgery date 3 weeks away, I ask myself the same questions but my priorities have switched.

1. What are my expectations?

2. Make a realistic pro/con list.

3. I attended a class that the dr’s office offered explaining the procedure and what to expect.

4. What are my pain med options?

5. Researched my dr. every way possible. I’m 100% confident in his plan and ability.

6. The surgeon, upon my request, went vertebrae by vertebrae.  Showing me on the MRI the fractured vertebrae, broken hardware and why it happened and how to fix it properly.I’ve always been afraid to bother dr’s with dumb questions. I don’t want to be “that” patient, I want them to like me. Can some of you relate? I’am quite certain many of you can not relate to that statement and that’s ok. I’ve changed. It’s ok to ask questions and take my time. It’s my life!

7. Is work covered?  Is my husband clear to miss work?  Are both of my kids in a good place personally?  The best part…I told my mom to stay in FL for surgery and to come with my dad once I’m home from hospital.  I don’t want my mom to sit in a waiting room for 8-10 hrs. and then see me the 1st few days.

8. I’m going to pack my husband a waiting room survival kit in advance. ( snacks, drinks, reading material, pillow, phone charger, thermos of our good coffee, etc.). It’s going to be a very long day and that is the right thing to do to show my love and gratitude. 

The theme of this post is perseverance. I have my moments of doubt and fear but I’m practicing positive self-talk.  I continue to pray and meditate everyday.  My sister suggested that I begin to read the bible with the simple request of wanting to hear God’s voice for me.  He loves me and protects me.  I will continue to embrace my asset to persevere, stay the course and believe that this surgery will work.  

I’ll do my part and I welcome any words of encouragement or experiences. For this particular post, please try to share hope, faith, success.   There are many more topics to be real.  This one demands perseverance for positivity.

Pain Medicine

This is a very personal topic and not too many people know my true story with pain medication.  When I say that my 1st back surgery was in 1988, one can assume that I’ve run the gamut with pain medication.

Back in the day, they used Demerol. That was my favorite because it didn’t make me sick and it worked. Apparently, too many people misused and/or died while taking it. I was shocked in 2006 when I had my 1st neck surgery and I was told they no longer use Demerol.

Morphine,  Fentanyl, and Dialodid, was the choice for immediate pain relief after surgery.

Morphine makes my head and face itch so then I would  need Benydryl to combat that side effect. It also gives me a headache and makes me nauseous. Fentynal and Dialadid do not have anywhere near the more lasting effect that Demerol does (for me).
While in the hospital, they assigned a pain mgmt team to my case.
In between surgeries (7 surgeries alternating neck and lumbar) I was seen by pain mgmt dr’s. Their motus operendi was to do epidural injections, rhizotomy injections (burn and disable the nerve root at the facet end),facet joint blocks, and sacrum injections. I didn’t mind doing these because I chose twilight sedation which prevented me from feeling most of what they were doing. Not to mention, twilight was the real pain reliever if only for a few minutes.
There were always those few macho people across the hall from me, sitting upright in a chair getting their epidurals without twilight. Why would they waste a perfect opportunity to get high?

Along with the injections, I had a smorgasboard of prescribed pain meds. A-Z I had it. Back in the earlier days, I would wake up and immediately go to THE cupboard and decide what I wanted to feel that day? That was the beginning of the end for me . Rarely did I wait and see if I even needed the pills. After sometime went by, I eventually stopped using the pain meds.

Then in 2006 the string of 7 surgeries began. I felt like I lived at Dr offices. Then it turned into never missing that monthly pain mgmt appointment. I would cancel a lot of spots. But never that one. Not because I liked the feeling. I just didn’t know another way to live. Eventually the pain meds stopped working. The dose, variety, etc. began to increase and therefore, I would “feel” relief. Needless to say, I reached a point where I had tried everything. Norco, Vicodin, fentanyl patches, Morphine, Percocet, Lortab, Nuerotin, etc…

I moved onto considering a pain pump. I met and was approved by the psychologist, I took the classes, had the testing, and even had a date set to do this. Something inside me resisted this. I didn’t want to live on a pump because what if I didn’t get the medicine timely for some reason? I would get sick. I didn’t want to live like that.

My memory was shot, my relationships with my children had changed, and my work life suffered to the point where I had to step down.  I wasn’t a bad person. I didn’t mean to hurt anyone or forget important dates.

I was a functioning patient dependent on meds and decided to check myself into a local rehab center. I stayed there for 28 days and they put me on 24 mg of Suboxone. I felt no pain relief and as a matter of fact, I felt nothing at all. The other patients were on 2, 4, 8 mg of Suboxone and didn’t understand how I was able to take 24mg?

I was frustrated that I left a treatment center still on a medication. What I didn’t know is that Suboxone has a negative connotation from other Dr’s and society as a whole. It’s a drug used to withdrawal from heroine and other types of opioids. I was using it as pain relief and felt very uncomfortable explaining this. Because it was not working as a pain reliever I decided to detox myself off of it and see exactly what amount of pain I was really in.  I heard that once I got down to the 2 mg amount and stopped completely that that was the hardest part. Some people I knew claimed that they were unable to quit for years. God was helping me and my desire to be pill free was such that I was off the stuff in 2 months.

Today I find it interesting to hear the drastic difference in how family and friends describe my personality at the end. Some said I was horrible. My personality and moods were unpredictable. Others said they didn’t know I was on heavy meds. Who do I believe? How do I forgive myself? Where do I go from here? What about the pain, because now that I’ve been off meds for awhile I knew that the pain was real. Now what?

Narcotics ruined my life, Suboxone doesn’t work and has a horrible connotation, and physical therapy wasn’t cutting it, injections were a waste of time and money and meanwhile back at the ranch, my marriage was suffering and apparently I has said something to a family member that I don’t know what I said but it caused years of resentment.  One thing is for sure, anyone who knows me knows the last thing I would want to do is offend a family member.  I gained a lot of weight (over 20 lbs) worrying about this and lost sleep.   That was all from 2006-2013. 2013 is where everything came to a head.  Luckily, most of my family still supported me.

Fast forward 4 years, 2017, and I’ve now attended a chronic pain program which deserves it’s own blog page and I’ve done reasonably well without any meds at all. Motrin not included! I’m taking too much of that so they’ve limited me due to elevated kidney and liver numbers. Crap.

It is now May, 2017.  I could tell over the past year that things were changing in my thoracic area.  It was hard to believe so I did my best once again to not participate.  I now have 2 grandchildren who I love more than life itself and another one on the way.  Medication is not an option.

Because I know to stay clear of meds. I began to pray and meditate. Asking God for relief and support.  I also ask for guidance on a daily basis. I admitted to him that I was becoming concerned with my back again but didn’t know who to talk to?  I don’t have an existing relationships with doctors regarding my back and the thought of starting this over again was more than I could stand.  Then something happened to remove any/all hesitations that I had on looking for help.

Back in December, 2016 my kids asked me to babysit in June so they could attend a wedding.  I think we all knew this was a bad idea but they respect that I love spending time with them plus they needed someone who was able to spend the night that they could trust.  As frustrated as my husband becomes when I commit to babysitting, who knew this was important for me to follow thru and he left me alone.  He actually purchased the plane tickets.  Well as time went on, come April 2017 I knew there was no way that I could safely babysit.  I definitely would not be able to lift my granddaughter who is not yet walking and that right there made it a game changer.  I had to cancel and call them to let them know but how and when?  It needed to be done right away but I just didn’t want to accept that change has occurred and I was about to confirm that they can no longer count on me.  Call it selfish, but it bothers me that they have 2 other sets of parents that are healthy and able to do whatever is asked. No longer the case here.  The conversation occurred and it wasn’t the greatest talk.  I hung feeling deflated, broken, and a failure.  I hadn’t even started the true process of finding out what was wrong but for me the worst thing happened.  I had to disappoint and change the plans.  Story of my life.  No matter how many friends, family, doctors, etc. tried to reason with me that was my bottom.

I then made a few phone calls to friends who I trust in the medical field and within days, I had the referral to Dr. Soo.  I did make a trip to the ER where pills were offered and a few other dr’s for opinions where pills were offered.   I declined but this time I felt so bad about everything that I almost took them up on it.  Yes, give me all you got.  Not because of the pain but because I don’t want to feel anymore.

I am not limited to working a very few hours per week which effects my income, I’m back in this bed which I don’t need to say much about that, and my husband is a saint but how long can he deal coming home to this?  I honestly reached a point where I thought, it may be better for me not to be here.  My kids all have beautiful lives with great kids, they have the support of the parents they like, and my husband can move on without a broken, broke, and fat women who needs more major surgery.  Hey, I’m just being honest.  This is how I felt.

Then my daughter posted something on fb that was so kind and caring that it stopped me in my tracks.  She had always told me that for her, it was so hard to watch her mom go from being so involved and active in her life to laying in a hospital bed.  She admitted that she was angry and didn’t know what to do with that emotion.  All of a sudden, after she found out about this next surgery she posted a call to prayer and good thoughts.  It was a detailed post that told me she did understand what has been happening.  The one thing I noticed is that there was not word mentioned of pain medication.  I don’t think it even occurs her to anymore.  She remembers how I was, but today she has let it go and respects me.  My son is still working on it.  I’m not sure how to help him understand the big picture.  He doesn’t live close by so he misses a lot of the day in day out drama of having a bad back.  This is a good thing but puts him at a disadvantage to understand.  Can you tell how important my families support is to me.  My parents are super hero parents.  Especially my mother.  Each and every surgery, she flies in and stays here for months helping my husband with the house and me.  I truly could not have survived this without her.  She prays with me, makes me laugh, and nurses me back to health.

So here I am facing the biggest surgeries of all.  Actually I’ve committed to 4 surgeries to make it all right and I’m aware as are my doctors that I have a problem with pain medication.  I will be prescribed and given what I need but we are a team now.  We won’t let happen to me this time what happened last time.

 

 

TRUST

 

New information from a dr. does not mean that I react and change what I’m doing.

It all comes down to trust with my doctor. I finally met a surgeon that I trust and believe in. Dr. Trek Soo has come into my life and he has offered me an ounce of hope.

I had none and I’ve reached the point where I am willing to consider additional surgery now that this dr. has  confidentially offered me a happy, stable life. I can’t say pain-free but he understands my expectations.

One of the main reasons I was able to relax and trust in him was due to something he said to me. He looked me in the eye and said, when a patient has cancer, the dr. sees it on the scan, operates, and the patient either lives or dies. With an advanced spinal deg. disc disease,  its a slow death. Most days, I lay in bed looking outside watching the world go by.  I don’t have a fulfilling life.

I cried. He understands. He told me that he has been doing this for 30 yrs and he would only offer surgery if he believed that he could and would do the same surgery on himself. If the answer is yes, then he offers a solution.

He explained to me how the prior surgeries were not done correctly; therefore, I now have broken hardware and fractured vertebrae.  The 2 prior surgeons, who shall remain nameless, did the typical fusions that fused a few levels and the last one fused the entire lumbar. Just not done effectively.

A spine like mine requires an aggressive procedure that uses steel rods and fuses tip to stern. Sounds scary and it is. But it makes sense. I’ve committed to 4 surgeries and Dr Soo is confident that he can improve the quality of my life. I can be the type of grandma I’d love to be.

I’m being fused T2-S3. Then we are re-doing C3-C4. His speciality is revisionional surgery.  The last 2 surgeries will be with each sacrum.

My original surgery date was May 27 but now I’ve been moved to mid-June. My immediate reaction was disappointment. Then I decided to go with the flow and trust.  I let it go. Much easier then stressing over something that I can’t control.

My next post is going to discuss my belief in pain meds and what I’ve chosen to do.

The theme of today’s post is TRUST.