Impatiently Awaiting My Escape

So, I am lying here in my bed, in the living room, trying to distract myself from the pain and another night of not much sleep.  Surgery went well. There was a slight possibility that the battery was the reason that the implant was not working to its full potential.  They had to test it during the surgery. If the battery was the broken part then they would have to sew me up and cut me back open after the insurance decided to cover it.  My doctor did not wanna pay $20,000.00 out of pocket.  To my luck the problem was the wire. While they were in there they tested the other wire and that was broken as well.  So they put new ones in. It is amazing how well the implant works now.  It covers so much pain that I wanna cry from the relief and excitement that my life can improve greatly.

The surgery was not the hard part. It was pretty difficult but what I dreaded most was the recovery. I was OK with lying on the table awake for some of the surgery.  And the IV was a breeze (which is rare for me). They cut open my spine about 4 inches in the center of my back.  Cranked it open and pulled the wires out.  They then opened up the battery area and took it out to test it.  When he put the new ones in I was awake for the testing.  I told them where I felt the stimulation and he placed the wires where they needed to be.  He had to cut away a bunch of scar tissue and re-tunnel the wires from the spine area to the battery in my upper left butt cheek. When everything seemed to be working great they tacked the wires down and closed me up. With everything that he did it has caused me pretty intense pain.  The battery area was where a lot of scar tissue was that he removed and the area where he tunneled the wires hurts because it just got cut open on the inside.  I hate taking pain pills so I am not taking as many as I thought I needed.
 

So, after all of that I still have a recovery that seems to be lasting forever. The wires are not secure tightly, because I have not sealed them with scar tissue yet, so I have to be very careful with what I do so that the wires do not move.  I cannot bend, lift, twist, reach and that leaves me to pretty much just laying here.  I  also can't put my elbows above my head or carry much. Even a plate hurts sometimes.  This all lasts for at least 6 weeks. I can add a little more activity through the 6 month period and carefully get back to doing a lot more things by the end of the first year of healing.  It has been one week since I was cut open and I need it to be over. I wanna go out and do stuff so much. I also miss driving. I feel so free being able to go do things.

The first 3 or 4 days are pretty hard. The crazy thing is that my doctor has me come in to be evaluated 2 days after surgery. It is hard enough going to the bathroom let alone riding in the car and moving around a lot. The check-up went very well. He was pleased with my recovery thus far. He wants to see me in a few more days. It would just be so much easier if he made house calls. But that can't happen.

 It is hard for me but because I can't even go to the bathroom alone, or do much of anything. Mom slept downstairs with me for the first 4 or 5 nights and got up whenever I needed her.  Dad would come down and check on me a lot. i just need the pain to go away.

Even tho accepting it was hard, I have felt a peace throughout this whole ordeal.  I think this last surgery went better than all of the past surgeries.  I had gotten rid of some negative and emotionally draining people. I only surround myself with positive people. I am spending a lot more time with family and I have felt really accepted at a church mom goes to.  I went a few days before my surgery and got so much support and encouragement.  The Pastor and his wife are great and we found out that they lives 2 doors down from us.  He calls me everyday to see how I am doing and to pray with me. 

I feel so loved and now I am eager to have a life that I have wanted for so long. I plan on starting some classes in the fall to work my way towards being able to apply for a amazing job opportunity. I feel so blessed with the family and friends that have shown me that I matter. Opening up like this, and letting people know of my surgery and other medical issues, has been very tough but I think it has been the best thing for me.  Now, I just do my best to heal so that my new life can start.  I am bored but at least I have Netflix, Hulu and a new book I find very inspiring: Defy Gravity by Caroline Myss.  I think I would lose my mind if I did not have these things to distract me.

Incompetence and Stress

So, by having the Spinal Cord Stimulator implant it means that I have to have a technician that works with me.  They reprogram me when needed and are there to help me. Well, my favorite people left. I got to know Ariel very well. She was great and tried to always be there when I needed her. I worked with her since before I got the implant installed which was about 3 years ago. About 4 or 5 months ago I had heard that she quit.  I was sad but am happy to hear that she got an even better job. While I was working with Ariel, I was introduced to Chris.  We worked great together and he trusted me enough to let me take over on the computer and reprogram myself.  It was so freeing being able to fix it on my own and not rely on another person.  Unfortunately, a few weeks ago, I found out that Chris had quit, as well, and we do not know what happened to him.  The reason I know a lot of things is because I have gotten very close with my doctors nurse(Teri). I have spent so many hours at Slocum that I got to know some of the people. She is very cool and helps me any way she can.  So now that I have no technician I trust, I must go into surgery with a new guy I already don't trust.  I was supposed to see him on Thursday but he forgot and was out of town.  He also was 3 weeks late on taking a implant tack-down thing to show Phillips because Boston Scientific had just put out new ones.  So Phillips is already peeved with the guy.  With all of this, I gotta get to know him enough to feel comfortable having him there in my surgery.  I meet him on Monday. The day before I get cut open.  This guy better not screw up because I am not scared to turn him in for doing an inadequate job.  Plus, he got fired from Medtronics and Boston Scientific hired him. I'm wondering if they are just so low on staff that they are desperate. But it makes me stress because there is only one technician in this area and the range is pretty far on how many places he has to cover. It is scary to know that he may not be there when I need him. So, all in all, my appointment yesterday was a waste. Teri( the amazing nurse) got the charge for the doc visit reversed. And now I just pass the days as best I can. Distracting myself as much as possible.

Falling Apart

As the days go by the empty feeling of doom takes over.  The fear of what I know will happen becomes a reality.  Being in chronic pain can cause emotional pain to the point of wanting to end it all. Wanting to be done.  I continue to push on even though most of me wants to give up. Here is something I wrote when I felt like I was losing it, both mentally and emotionally. I will post some more of my writings as time goes by.

Falling Apart:

It tears me up inside to the point I feel sick.  The hopeless feeling of needing something more but no ability to find it.  Of wanting so much to be different but not able to change anything.  Of life continuously falling apart.  I do my best to hide everything.  Every tear.  Every frown.  I hide from the world the insecurities and embarrassment.  The scared girl wanting to be free of the hurt and pain of life.  Of the non-ending feeling of being completely out of control.  The one thing that is needed to feel like one can live and not even being able to grasp onto it. So that all that is left is a scared little girl that tries to hide the pain. Hide the hurt. Hide everything from so many people. Try to hide it from myself.  But all it does is tear me up to the point I feel sick.

  

~Rach

April 5, 2011

Pain Doc Appointment

So, yesterday I had a doc appointment with my pain specialist.  We set up for the surgery to be on the 19th of April.  Now that it is set up, I am super nervous. It's not the lying on the table, awake and chatting, as he fixes the wire. It's the after. The almost month of no activity and a year of limited activity.

He will cut me open about 4 inches.  Located down the middle of my spine. Crank open the area and pull the wire out. He also has to open up the incision on my upper left butt cheek and take the titanium device out to test everything.  If it is going well he will test on where I feel it, then tack it down and close me up. If it stays in its place, as he closes me up, than it is all done. But if it moves (like the last time) then he will have to go back in.  It is hard to accept but I fully trust him. This is my 4th time having him mess with my spine, so the fear gets less and less each time I get cut open.

But first I have to have my pre-op appointment on the 11th.  That is usually when they bring in the Boston Scientific Technician and they test everything to clear me for what has to be done. Unfortunately, the 2 techs that I liked are gone. They quit and got replaced with a spacey guy. I am gonna have to train him. Chris always let me reprogram myself and Ariel let me do most of it. It was fun getting to mess with the programs and not having to hear "where do you feel that?" every 3 seconds. 

The way it works is that I have a remote.  It connects to a device that connects to a laptop computer.  Then you sync them and pull up the 4 different programs and the history of whats been working or not working. Then you change the frequency and stimulation focal point.  The way you do that is that you change the electrodes to on or off. If on then it is either a positive or negative.  Then you can change the numbers to change where you feel the stimulation. Then you save it and you disconnected the remote and hold it by the implant. It uploads the programs, then I am able to control it.  After that, it typically helps for awhile but sometimes it can change just by walking out. There are times that I can be reprogrammed every 4 or 5 months and other times I need to change it a few times in a month.  The people at Slocum work with me to help me stay as comfortable as possible since the pain never fully goes away.

Remote on the left,
Battery charger in the middle(that is charged by a base and then that is stuck on the outside of the titanium device),
Implant on the right(wires go down from upper spine to titanium device in upper left butt cheek.