The Persistent Irritation

I sit here irritated, agitated and ready to scream. All I want is a break that is long enough for me to enjoy it. The ache that is constant and the burn that overpowers you. The feeling as if your leg is in ice water but your skin is on fire. The inconsistent ups and downs that fill your day with doubt and discouragement. Never knowing if today will be a good day or if all your plans need to be canceled at the last minute. To not plan much because all it would do is hurt those around you if you have to let them down over and over. At times laying in bed and feeling so alone. So embarrassed at the fact that you can't even meet someone for lunch if it has been a really bad day. That you may have a dream but powerless to pursue it. That the dreams you have may not come true. The thought of giving up seems so great at times. But then there are times that through it all you have grown. You find your path, your purpose for the pain and the hurt. That in the end all you can think of is that no one should feel this. Feel this lost and useless. That you could do some good in this world. Do something to help others not feel so alone. Not feel like a waste or a burden. My life is hard but there is no reason for others to feel that way. I have found that that is my purpose. Helping others find the joy that was lost so long ago. Get their dreams and enjoyments back. Relating to them and trying to show them that there is hope. That we can make it. That we must push and push till we realize that our lives can be restarted. The pain may always be there, but we can find a new way of living. I know it is the hardest thing to do. To release and go on. All you need to know is that it can happen. Anyone can restart. All you have to do is let go. Let go of the past and fight. Fight harder than you've ever had to fight. And always remember to never give up. Never surrender.

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."

~Harriet Tubman

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."
~Author Unknown

  

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'"

~Eleanor Roosevelt 


-Rach

The Exuberant Ache

So, today was the 2nd post-op appointment with Dr. Phillips.  It went very well.  I got reprogrammed and I even met the new tech dude for this area.  His name is Sam and the main dude is Brian.  Programs 1 and 2 were working great so Sam just tweaked programs 3 and 4. Program 3 was stimulating my upper body and so it was brought down to the lower region of my right leg.  Program 4 was up in my left side around my stomach so that one got brought down but still covers from my toes to my stomach. I usually don't want it in my stomach because it is a really annoying feeling. But bodies shift and I always have a program set up if the area were to shift.  It helps some of the time. Especially during an intense fare-up where most of my body can hurt. Sam was really cool. He was impressed with me that I could guess the frequency by just the feeling of it.  The frequency is the faster or slower the stimulation goes.  He set it and it felt like a 50.  So I told him it was a 50 and I was totally right.  He was amazed at that. Then we finished up and closed the session and my remote transferred the updated data to the battery. 

 They left and Dr. Phillips came in to inspect the incisions and to remove the steri-strips. He also checked the middle of the spinal incision because, in the last few days, there has been a large lump growing.  It hurts but he is not too worried. He said to inform him if it gets bad but, overall, I am dong good and will see him in 2 weeks.  

In the meantime I am healing.  It has been 2 weeks and I am so sick of TV and laying in my bed for long periods of time. The nausea comes and goes and I am not taking that many pain killers anymore. In the meantime my headache doesn't go away for very long before it starts up again.  At least I am sleeping and eating well. Mom and dad have been getting back to work and they come home early sometimes so that Porthos can go potty and so they can help me make food. Normally they just put everything at arms length so I don't have to reach or bend (which are huge No No's) and so I can do a lot by myself. Also, I have had good support from my neighbors. Some of them have come over to help by chatting with me and taking Porthos out to go potty. It is very helpful. 

What is great is that an awesome friend is coming over tomorrow to help me out and hang out with me. We have not seen each other for quite sometime.  It will be good so mom and dad can get some things done. It really helps having people come over. It helps me not feel so alone. It seems that, overall, I am in a pretty good mood. Especially when I find something new and entertaining to watch on Netflix or Hulu.

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.

Reflex Sympathetic Dystrophy

Reflex Sympathetic Dystrophy

At the age of 17 I fell and snapped my right ankle. As it healed something was wrong but nobody could figure out what it was. As time went by the pain remained. I knew people who broke bones but they never experienced the pain that followed me. So the doctor appointments started and I got to the point that I could barely walk. The doctors had ideas of what it could be but they could not find what they had hoped was there. Something to show why I am in constant pain. The bone scans and x-rays showed nothing. CT scans were pointless. One doctor thought he saw something, that he thought may be contributing to the pain and discomfort, but it ended up being nothing. But, before we figured it was nothing, I had to endure a steroid shot between he bones in my right lower limb. That was a huge mistake because from then on I was confined to a wheelchair. The symptoms escalated as it got to the point that my skin burned and nothing could touch my lower limb. As the days went by my fear did not cease. The more doctors that said they could not figure it out raised my stress level. I finally gave up hope and came to the conclusion that it was something that I had to suck up.

When all had failed I was transferred to a new specialist at Slocum Orthopedic. I had never worked with a pain specialist before so it was a new experience. The day of the appointment made me nervous but I was ready to get the help I had hoped for. The first appointment was so much easier that I had expected. The Doctor talked with me for almost 2 hours. I told him everything. And it blew me away when he listened like he actually cared. Like he wanted to help me. He examined my lower right limb and was pretty positive that the unending pain was because of a nerve disease called RSD(Reflex Sympathetic Dystrophy).

Just knowing what it was was so comforting. He explained that the nerves never reset after the break and that means that I must live with the feeling of my ankle being broken 24/7. It was nice to know that it is not all in my head. That there is something that can help.

Complex Regional Pain Syndrome:

Reflex Sympathetic Dystrophy

Symptoms:

~The main symptom is pain but that may also include the feeling of your skin burning as there is nothing that can be done to aid that pain.

~The disease gets worse as time goes by and is typically caused by an injury.

~The disease has a big chance of spreading and may take over the whole limb and possibly the whole body.

There are 3 stages of RSD.

The First Stage lasts typically for about 1-3 months.

~The skin temperature changes and can change rather quickly to warm then cold then warm again.

~The hair may grow faster.

~Then comes the muscle problems and joint pains.

~There is a severe burning feeling and is sensitive to any touch including water or a breeze.

~Skin becomes purple, blotchy, may sweat more and gets swollen.

The Second Stage lasts 3-6 months.

~The changes continue and don't subside .

~Nails be become brittle.

~Pain intensifies.

~Hair may drastically slow down its growth.

~Joints become still and weak.

The Last Stage is when the disease has become irreversible.

~There is very limited movement because of the muscles and tendons tighten.

~The burning intensifies and continues most of the time.

~Muscle becomes weak and simple movement may be increasingly difficult.

~Limb may turn purple more often and can become deformed as the swelling gets worse.

~The entire limb has unending pain and may continue to spread throughout the rest of your body.

I am in the last stage(Stage 3) of the disease. The pain is chronic and there is no hope that it will get better. Luckily some of the pain is manageable. I have a SCS(Spinal Cord Stimulator). There are wires in my spine that consist of 8 electrodes on each lead. 2 leads stimulate the nerve endings and help block some of the pain signals to my brain. The pain is still there and has a very large chance of causing the person increased depression and anxiety.

Unfortunately, I have had some complications regarding the disease. It has spread throughout my whole right leg from my toes to my upper right hip. The pain is excruciating but I have been able to get out of the wheelchair and attempt to have a life.

It is something that I must live with and I have been able to suck it up so far. At times you may see a tear roll down my cheek as I try to hide the pain.

Unfortunately, I will be cut open next month because the implant has malfunctioned again. The lead has a kink and is electrocuting me in my back. The recovery lasts up to a year and sometimes many years till the tissue holds the wires in place.

Because of this I have ended up in the psych ward twice. It just becomes too much and hard to bare. I don't get upset as much as I used to. It is hard but I have learned to deal with it. That doesn't mean that it is easy or that I am fine. I just know that, no matter what, I must go on. I can't let this stop me. I will try my best to not let this stop me.



“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
~Kahlil Gibran