Emotions surrounding the Spinal Cord Stimulator

This is my first time back to this blog in a long time!  So many things have been happening that kept me very busy.  Busy and frustrated!  I didn't have time to write and didn't want to fill the blog with complaining instead of encouragement!  So I just didn't write.  On another day, I will write about these past 5 months!  For now, I want to share with you the process of getting a spinal cord stimulator (SCS) and a few of the emotions that went along with it!  Warning:  it may be long - don't know how to write about the emotions without a little explaining first!  Bear with me!  :)

My husband, Dick was in a horrific accident 14 years.  At the time, he was so banged up and bruised that they couldn't see much on X-rays and scans through all those bruises and damage.  He kept complaining with his hip hurting, and they checked his hip again and again, with no broken bones showing.  Much to our dismay, two years later they realized that his back had been broken in two places and not found.  Therefore, they healed on their own and not in the correct position!  He has gone to a pain doctor since that time.  And has had just about any treatment that they could do to help relieve some of the pain from the arthritis and other problems caused from those injuries!

Finally after many months of going off of blood thinners and other medicines,  he was scheduled to go into the office and have a Trial SCS inserted into his spine. Pain is an electrical signal that travels along the spinal cord up to the brain.  The SCS is implanted in specific areas of the spine that masks the pain signals to the brain.  So the trial is where they insert wires up into your spine and the wire physically comes out and is attached to a "little box" which is the SCS.  They have one stitch holding the wires in for this 4-5 day trial.  You wear the box on a belt around your waist!  The purpose of the trial is to make sure the SCS works for the patient.  Each person is different in their pain and what helps and what doesn't!  After the trial you go back into the office and it is all taken out of your spine! If it has helped you will then make an appointment for the permanent implant which is scheduled within a couple of weeks (hopefully).

We were scheduled for the trial on Friday afternoon, September 19th!  For months we have waited for this and anticipated it!  You can't begin to imagine the hope you have and the longing for this to work!  When you live with chronic pain as the patient and as the caregiver, you pray for anything to help!  So Friday morning, I had to get up early because we had several deliveries and things that had to be done for the business before we left for Charlotte.  When I found myself on the verge of tears, I realized just how nervous I was.  Nervous for the actual procedure and nervous for the end result!  I immediately texted several friends and had them start praying!  Their encouragement was just what I needed at that time!  I knew they would be praying all through the day!  I got myself together some and came home to get Dick and head to Charlotte.

Our appointment was at 1:30 (one hour before the trial).  That was for prep that needed to be done such as vital statistics and starting IV's.  The doc came in and the representative from Boston Scientific.  They answered any questions we had and we were ready to go.  Well, apparently there had been a delay in the operating room, so there we sat!  And Sat....and sat....and sat....for about 1 hour and 15 minutes!  Talk about not doing much for the nerves!  I was trying to make sure that I didn't show my fears or nervousness to Dick.  I was trying to be that calm presence that he needed. But boy was I getting apprehensive!   Finally at 3:45 they took Dick in for the procedure!  I sat and waited in the waiting room.  I answered emails, I made phone calls and tried to keep myself busy! Just as I was beginning to worry about why they hadn't called me yet, the nurse came to get me!
Then the process of programming the stimulator to Dick's personal pain levels began!  We received many instructions!  Things to do - things NOT to do!  As I am standing there, the nurse looks at me and asks if I have any questions.  For some some reason I just asked her if it was unusual for me to be so nervous that I was about in tears.  She looked at me and said, "You are nervous because you are afraid it won't work".  Boy did she hit the nail on the head!  That was exactly what it was!  She gave us some additional information and then told me to believe in the product.  It had helped others and she was confident it would work for him too!

So we left the office at 5pm.  We were in Charlotte!  Have you ever been in Friday afternoon 5pm traffice in Charlotte?  Not a fun place!  But as we started on the way home we discussed our hopes and dreams for this product!  I told him that when we left the office he was actually walking upright! He hadn't done that in months and years.  But he was walking straight!  That is the first thing I noticed and the first thing that my son and his wife noticed that night!  At that point he was getting used to the sensations of the stimulator and adjusting it to the right levels.  (Oh, did I forget to mention he has a remote for it?  Yes, he has a remote to turn it up and down!)  Then as he began to relax, Dick went to sleep.  I wasn't surprised.  He never slept much and especially didn't sleep great on the night before a procedure!  As he is sleeping, I am listening to one of my favorite stations, 106.9 The Light!  I was singing along,  praying for this to work and my nerves were still getting the best of me!  Then one of my favorite songs came on.....It's A Beautiful Day by Jamie Grace.  It's an upbeat song that makes you bounce and sing along!  So it gets to the second verse and WOW!  I was blown away!  God was using this song to speak straight to my heart!  The verse goes like this:
     When trouble seems to rain on my dreams
     It's not a big, not a big deal
     Let it wash all the bugs off my windshield
     Cause You're showing me, that in you I'm free
     And You're still the refuge
     That I have to get to...
WOW oh WOW!  Did God just send me this song?  I just need to trust and take my refuge in him! And it was a Beautiful Day!!!

I wish I could say that my nerves stopped then and were quiet the whole weekend!  Nope, that didn't happen!  Everytime Dick moved or looked like something hurt, I was asking if it was his back or his knee!  But praise the Lord, til now the stimulator is working and making a huge different in his pain levels.  Before he received this he was taking anywhere from 2 to 4 pain pills per day!  Since the trail started he has taken one per day!  What a difference!  I have described the feeling we have is like holding your breath!  You are hopeful and think it is going to work, but you are holding your breath so nothing will make it stop working!  We are still apprehensive, but we have faith that God has sent us in this direction to give him some relief and the ability to live life a little more fully!  Pray with us for continued good results!!!

The Best Laid Plans

We have all heard of people who laugh and say they have Type A personalities.  We know people that make lists!  Unfortunately, I tend to be one of these people.  I make plans and I make lists.  If it isn't written down, it is still listed in my mind.  I mentally check that list off!  And most of the time, I actually write it down!

However, when you are a caregiver, that list may fly right out the window.  My husbands pain doesn't know what I have on my list of things to accomplish today.  I admit, I am not always gracious in that situation. I may pout because I have to add things to my list that he was going to handle.  Sometimes I go with the flow. That always means that there are things on my list that remain undone.  Sometimes I don't get the grocery shopping done.  My den floor isn't vacuumed.  The towels stay in the hamper to be folded.  

What I think is important to say to caregivers is this is OK.  The efforts you make to take care of your husband, child or parent is important.  Sometimes even critical to be done FIRST.  Sometimes, I tend to beat myself up for not getting all of my list finished.  Even if I added 10 things to it.  You feel failure.  What we need to learn is that we probably put way too much on our plate.   I need to learn that as a caregiver to two people, I need to limit my lists.  Most days, something will occur that sends me a different direction than my list.  For example, one day not long ago, I was going to clean my house.  But a minor problem with my Mom's oxygen took me to her house.  Since I was going that way, I needed a few things from the grocery store and decided to go today instead of tomorrow.  I was gone much longer than I intended and when I returned it was almost dinner time.  So instead of going out like we had planned, we just grilled out.  And guess what - my house did not get cleaned.  Yes, I was disappointed.  Yes, I was a little frustrated.  But I need to learn that my Best Laid Plans aren't always what need to happen.  I needed to be there for my Mom's need.  I needed to sit tonight after dinner and listen to something my husband was working on.  He needed a sounding board.  Those are the things that are important.  Those should be my LIST.  As caregivers, we need to give ourselves a break from the failure of not getting it all done.  We have given a much bigger gift to the one we love.  Give that gift to yourself, as well. 

Change of Scenery

Have you ever been sick and just wanted to get better so you could take a drive in your car? You just wanted to get out of the house and stop looking at the same four walls.  Or walking down the same hallway to another four walls?  Imagine that same situation if you are in chronic pain or have a life long illness that keeps you inside or from going many places.  It would be hard!

This weekend we were blessed to be able to go to our daughter and son-in-law's in Raleigh! This was the first time that Dick went to see their apartment and went with me for the visit!  No, he didn't feel the greatest! He actually never left the apartment once we got back from dinner on Friday evening, but it was a wonderful change of scenery for him!  He was able to watch basketball with Tanner and spend some time with them before they move to NYC.  He is totally worn out today, but it was totally worth it.

Today we are headed to Forest City to see our newest Grandchild on ultrasound and find out the sex of the baby!  We are all really excited.  Afterwards we are having a Gender Reveal Party (apparently the newest thing).My mother doesn't drive anymore and doesn't get out very often, but I will go and pick her up and make sure she is there with bells on to find out the gender of her newest great-grandchild.  Yes, she will be worn out, but this too, will be totally worth the time and effort for her and for me!

The point is when you are not well and are inside your home the majority of the time, you need to occasionally have a change of scenery!  I know that some people are not able to get out of bed, but if you have any sort of mobility, use it til you can't!  Get up and look out the front door, walk out on the porch, go out and sit on a deck!  Do anything that changes your routine.  If you are blessed to be able, get in the car and go for a drive.  As a caregiver, try to not see this is a chore!   Look at it as a change of scenery for yourself as well.   And think of it as a blessing for you!  You get out of the house, too!   Along the way, you blessing the other person with an outing, will become a blessing to you!

Pain

Pain! Webster defines it as:

¹pain

 noun \ˈpān\

: the physical feeling caused by disease, injury, or something that hurts the body

: mental or emotional suffering : sadness caused by some emotional or mental problem

: someone or something that causes trouble or makes you feel annoyed or angry

Yes, pain is a constant in our home.  In 14 years since my husbands wreck, it has gotten worse and then much worse. I believe for him this takes the form of each of the above definitions of pain.  He has physical pain caused by injury. Then the pain causes emotional suffering and feelings of anger and resentment.

As his helpmate in life, I endure these feelings with him.  I try to encourage him when he gets sad or discouraged.  I remind him of our blessings and such.  But for those of us who are caregivers, we also feel some of this pain.  We sometimes are crying inside while we encourage them. Often we are crying with them over the unfairness of the situation and the pain that never goes away.  And we may both handle it better on different days.

As caregivers, we sometimes have "pains" as described above, but have not been injured.  Sometimes we don't have the physical pain, but definitely have the sadness, the feelings of being annoyed or feelings of anger.  I want to say to you that this is normal!!  I really need to say to myself that these are normal!  Don't beat yourself up because you get mad at the situation!  No, it is not fair! Not fair that your loved ones are hurting, or that you have to help with it.  I encourage you to talk to someone!  Anyone that you can.  Tell them that it makes you so mad sometimes!  And that you are tired.  Take an evening and go to eat with a friend!  Visit your son or daughter if you have one.  Talk to someone at church.  Go to a counselor.  You need someone that hear your frustrations and let you have tears if you needed.  We need to admit to ourselves that these feelings are normal and healthy.  You should not feel bad about having them.  Just speak it out loud - to yourself if you have to and you will feel better!  And I will be glad to listen to you scream if you need to!  Call me, email me anything you need!  But remember, I may need to scream too!  :)  

Guilt

This morning is a "me" morning.  It is a fun morning.  I always love the little things in life and one of those things is having my nails done every three weeks.  I get to have a little time for me.  I get to be pampered.   I get to chat with a friend or two for an hour and a half. 

Today, however, it is a trip of guilt that I'm on as I go to the nail salon.  A call from a customer with an emergency order and an unexpected sick trip to the doctor wit my mom, are all on my mind.  These things are giving me that awful feeling of this is unnecessary!  This is taking time when I need to be doing something more important!   My husband is disabled from a wreck 14 years ago.  He does still help me in our business when he can.  On my nail week, I make sure that I have everything done the day before.  But today, no amount of pre-planning could help with the much needed item for a customer.  My husband graciously agrees to handle it - there comes the first twinge.  I know he can handle it, but I also know he is hurting this morning.   Then as I leave for my appointment, I get the call with the doctor appointment time for my Mom.  She has heart problems and breathing problems, so when she gets sick, they see her right away to keep away hospital stays!  So there comes the next twinge….I have to be there to take her as soon as my nail appointment is over.  No time to head home, check on my hubby or customers.  But this is something I have to do!

Now, after saying all of that about guilt, let me say that it is self-induced.  My husband assures me he is ok and can handle it.  And he can handle it and will.  Things with my Mom pop up from time to time and my sisters and I handle that as well.  Somehow in my role as caregiver for my husband and Mom, I forget about myself.   So today, I keep telling myself there is no shame in taking a little bit of time for me.  I will go and enjoy the time to just sit!  I will push the guilt away!