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09 January 2012

I am taking a course through RBC Ministries and ChristianCourses.com titled "Ministering to People in Pain". It has been very interesting. One of the lessons deals with helping people develop resilience as the fourth intervention in helping people with pain (PWP).

Resilience is the capacity to recover quickly from difficulties;toughness; recovering readily from adversity, depression, illness, etc.; able to endure tribulation without cracking; strong enough to recover from difficulty or disease.

People with rheumatoid arthritis and other chronic illnesses, especially those that cause pain, need to be resilient or they will not be able to survive in spite of their illness. And not just to survive but to thrive as well. Being resilient is not always an easy thing either.

The lesson discussed a study that may be marks of a resilient person. They are: insight, independence, developing relationships, taking initiative, creativity, humor and morality.

I was struck by the ending comments.

"When we look pain right in the face, and we say, “By God’s enabling grace, I can manage you, because I know this isn’t the end of the story, that the day will come when everything will be changed,” God will triumph and this pain will pass away."
"And resilience comes when we take our rightful place in God’s story as revealed in Scripture. We can do it when we remember that our pain is not a prison that keeps us locked in the past, but resilience comes when we choose to deal with our situation knowing that ultimately God will bring all things together for good. And this gives a different way of looking at our pain."
For some reason, these words hit me as so profound. In the last few years, one could say I've had a rough time. But, I have also learned a great deal in this time as well. Lessons in relying on God to see you through pain. I am thankful for these lessons even though they were learned in extreme pain and hardship. At one point during the time I was in the hospital, I was not alert but was in so much pain that anytime the staff touched me to do care activities, I'd cry. They all felt bad about hurting me and some were troubled enough by my pain that they left the room in tears at times. But, I do not remember any of that time. And while missing a chunk of your life is a very odd feeling, I think it was a measure of God's grace that I was not alert to what was happening and do not remember that time. The pain subsided some and as it did, I "came back" so to speak. I was in an odd state for half of Jan. 2009 through the beginning of Apr. 2009. In that time, my health was bad enough the doctors were questioning my survival. I know it was hard for my family. I was told I may never walk again, that I'd likely be in a nursing home the rest of my life, and so many other things that I've forgotten most of them. One that sticks out in my mind is the doctor who, as we were discussing the options for my next step in treatment after my feeding tube had come out.

I had a feeding tube because I could not keep food down much of the time. It was likely due to the fact my esophagus was a mess of raw places. Those raw places extended through my stomach and into the first few inches of my small intestines. I had NO appetite either. I'd had a naso-gastric feeding tube off and on for months. That is a tube that is inserted into the nose, going down the esophagus and into the stomach. They needed an option that was more long-term. So they inserted a jejunostomy feeding tube (J-tube) is a tube surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The procedure is called a jejunostomy. This is done under general anesthetic. The J-tube is one that if it comes out somehow, it cannot be replaced. Great care was taken to ensure it did not come out.

One day, one of my CNAs was readying me for my bath. She leaned me forward to remove my gown from behind me. I clearly remember watching her make sure that the gown was not on the tube. She arranged the gown so that it was on the opposite side of my body from the tube. I am grateful that the nurse was in there giving me meds as the CNA came to ready my bath and that because the nurse delayed her, the nurse offered to help the CNA with my bath so that it went faster. As the CNA picked up my gown to put it in the dirty linens, the nurse was standing to my left side, where the tube was; with the CNA was on my right. As she removed the gown, we all watched stunned as the tube easily slipped out of the hole and followed the gown across the bed. We all kept looking from the hole to each other in silence. The CNA was upset and worried she had done something wrong. It had not hurt a bit. I didn't even feel a tug really. The nurse was trying to figure out what happened. The only thing she could see was there seemed to be only a few stitches holding the tube in. I was more concerned about the CNA than what had happened. I didn't want to see her in trouble for what happened. I was very glad the nurse was there to help keep the situation calm.



Over the next few weeks, they went back to using the NG-tube while deciding what the next step would be. I will NEVER forget the day one of the doctors was there for rounds. She wanted me to know that the ethics committee would likely be coming to visit me so that they could decide what to do next. Then she told me that I was a terminal patient and they had to decide whether more procedures would prove beneficial or be wasteful. Had I been myself, that doctor would have gotten an earful! But, I was not myself at all. I had NO fight in me anymore really. Later I was thinking that we are ALL terminal in a way. In healthcare, terminal is defined as: "predicted to lead to death, esp. slowly; incurable". Life is a terminal thing. We are all going to end in death (barring the return of Christ before we die), and for most of us, it is a slow process to lead us there, giving us decades in which to live our lives. But, I did not think of that until much latter. I did immediately call for the head nurse on the hall to tell her what happened and see what needed done so that I NEVER had that doctor in my room again. I think that was a turning point for me. I was angry enough that the doctor said that in such a cold way. I was going to show her. I'd make it and lead a wonderful life, even if it was vastly different than the life I had before the illness started in Dec. 2008. I don't recall speaking to anyone from the ethics committee but, two weeks later, they decided to insert a percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

Shortly after that tube was inserted, I began to have an appetite again. I slowly got more movement in my hands and arms. I was alert more, sleeping less, remembering things better, in less pain and able to tolerate being touched without crying. I even was put in a wheelchair and wheeled around the hospital at times. As I progressed, the decision was made to move me to a nursing home. That was a concern for my family members as one family member is a paramedic and has seen some of the horror stories of nursing home care. But, there was no other option.

The nursing home I was transferred to was exactly where I needed to be at that point. The staff there, from the administrator, director of nursing and all the higher ups down to all of the non-medical positions like housekeeping, dietary, laundry, maintenance, activities, social services, and business staff were all extremely caring. The nursing staff and therapy staff were wonderful. Most of the CNAs, nurses, therapists and therapy aides were so supportive, caring, friendly and made you feel like family. In the two years I spent there, I got to know many staff members fairly well. I miss them in all honesty, but I do keep in touch with many of them via Facebook. I also still go visit the nursing home now that I am home. I go as part of a ministry group that I got involved in as a resident. During the morning, we visit residents in their rooms, reading a short devotion and having a time of prayer. Then in the afternoon, we have a Bible study for a small group of residents, I grew to care not only for the staff members but also many of the other residents. I still keep in touch with them during our visits and even through occasional phone calls and text messages.

Had I not had rheumatoid arthritis and the other pain causing issues, I would not have had the problems I had that landed me in the hospital. Had that not happened, I wouldn't have needed to go to a nursing home. Had I not went to the nursing home, I would not have met a number of people that I am so thankful I got to know. I also don't know if I'd be walking yet. It was predicted that it'd take 2-3 years of daily, intensive therapy to stand let alone walk, if I ever walked again. The physical therapist I worked with at the nursing home did not work me intensively or daily. But, he came up with a way to get me on my feet before my leg braces were ready. Then he had me walking less than a month after I stood. All in all, I started PT--- working for an hour a day, 3 days a week--- on Jan. 5, 2011. I first stood on Mar 29, 2011. Then on Apr 18, 2011, I took my first steps in 3 years. I had my son behind me, literally, and the rest of my family and friends emotionally behind me. My son was visiting me while on spring break. He especially wanted to see what I did in physical therapy.

Before that PT session, we had been in a church service that morning. As the service ended, the pastor chose "Victory in Jesus" to end the service. I didn't think anything of that until the next day. I led a devotion time on the Alzheimer's unit of the nursing home. The activity leader on the unit chose a song for us to sing. It was then that the second verse of that song hit me. The line is "He makes the lame to walk...". I almost broke down in tears there. I realized God had done just that in effect. I was lame, I couldn't stand, couldn't walk. But through the hard work of my physical therapist and the prayers and support of my family, friends, their extended circles and churches as well as the support I received at the nursing home, God worked a miracle in me and I was able to walk after doctors didn't think I'd walk again.

God worked my pain and health problems for good. He had a plan the whole time. I am now home, walking with crutches most of the time. Able to do many things for myself now. I still need quite a bit of help at times from my husband, son and a good friend of ours that we live with but that's ok. I am home! I am where God wants me. And He got me through the rough times to bring me here. I think I am to use my experiences to help others with their pain. Exactly how, I am unsure. There are so many possibilities. I worked with an RA support group prior to being hospitalized and am back with the group. But I also think there is more in store for me when the time is right. My last three years have been an example of the verse in Romans 8:28, "And we know that all things work together for good to those who love God, to those who are the called according to His purpose."

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