Fatherjohn Update

I want to try and keep this short so if I leave things out my wonderful friends, just keep asking.

I went to see the PMS as schedlued today. There were two reps there from Boston Scientific, both of whom I have worked with. They were trying to program the SCs and the PMS came in and looked at my staples and then started taking them out while they were programing. So we stopped the programing until he was finished. There is an infection in one of the incisions and then they worked on that until I was good and sore. They think it is surface and not in the deep tissue but I will go back and they will check it again and if it gets any worse they will get me in immediately. As the PMS was leaving the room I asked him to return after the reps were done as I wanted to talk to him one on one. He agreed. The programing went great and we are hoping for the best. They even taught me how to do some minor reprograming myself (not normally done they say).

The PMS returned. I just let him have the reasons for my lack of trust in him and the fact that he is not personal and does not seem to care about me as a patient. i went into detail and he just looked at me and hung his head. As we proceded, I had the feeling this was not the first time he had been talked to. I went all the way through the pre-surgery to post surgery and that I wished I had not had it done with him, the anesth. and the surgeon together. He floored me. He said there was no excuse for doctors allowing anything personal between them to affect a patient. He appologized several times and told me that he respected me for having the guts to confront him. He then told me to write a statement and he would address it further so this would never happen to another patient. He stated that he did have a difficult day that day and that when he was finally with me in recovery, he was exhaused and all used up but stated that was not an excuse, he provided terrible care. He then asked me what I would like him to do and if I was to continue with him, what I expected of him. I told him honesty is always a place to start.  He told me he did not question my pain level. He said that the fact that I work, he has great respect for me. But confessed that he was not sure what to do with me. I have tried so many medications, three surgeries in 18 months, PT and more PT. He suggested me seeing the  Psych. Dr. not to discuss if my pain is real but to see if there is something else that he has not thought of that will allow me to deal with the pain and keep working. He then asked me what I thought we should try regarding meds. I made a suggestion and he said that it was a combination that had not been tried and it was worth trying. He also suggested me having a sleep study done and will follow-up on that. I told him I was seeing my PCP tomorrow and that part of the reason was to look at the PCP taking over. He is willing to have the PCP make suggestions as well if I remain with him. So I will see after tomorrow. The man came off as a Dr. with feeling by the time I left. Whew!

     YOU are so BRAVE! gosh! The conflict resolution with the doctor.... im suprised by this reaction. I had him "Pictured" in my mind as a completly differant person. It is very commendable of him to take such an approach to an already bad situation. Small suprises everyday...  How does your S C S feel? Did you sleep well last night? I got the impression from reading posts from others with an S C S that it isnt turned on at night? Is that right? How does that work? Here I go with way too many questions..  if I bugg you let me know

Hope you start to get positive results soon!

*huggs*

dani

PAlady, Thanks for the encouragement. I did get some sleep last night which was greatly needed. I was exhaused last night and I will admit I was not mentally in a place I need to be. Just with work, CP and all the dr. visits etc. You well know that feeling of being worn out. I have been playing with the SCS and will see how it works.

Skeye, always a joy to hear from you. I sure hope you are feeling better today.  I am approaching the relationship with him as gaurded, I like to see the fruit of a change not just the words.

Edt, along with Skeye's statement of not knowing if she would trust him, I had to weigh the idea of writing him a letter and not knowing exactly what he plans on using it for. The broken trust causes one to question.

Dani, questions are not a problem, I deal with what seems like hundreds every day. I can adjust the SCS in various ways. w different channels, I can turn it up or down to adjust the strength of the shocks, yes I can and have run it at night. If you turn it up high at night to distract from the pain it may be too intense to sleep with. I have tried to turn it down to where I barely feel it as they say that works for some. The SCS does not take any pain away, it is like a vibration going on inside you (electrical impulses) and they are on the nerves that cause the pain. They send a signal to the brain that masks the pain. It can be annoying at times because if you move, sneeze cough etc at can increase with no notice. Also the constant vibration can get irritating. I try and change the channels often so that does not happen.

Sandi, I find it easier to give people a way to graciouly accept responsibility is better than attacking them. We all get defensive when we are attacked. There is a scripture that states speak the truth with love. i try to put that into practice as it opens communication with some who are difficult. They say people don't care how much you know until they know how much you care. Maybe an old saying but if we can get over the hurt we won't hurt others as much. I will add another post in a few.

Father John,

I understand you questioning whether you trust him enough to keep him as your Dr.  I would have trouble with this as well.  Writing him a letter will do 2 things it will be an additional tool to help release the trauma this situation has caused for you.  Since he did admit his lack of care, it will serve as a reminder to him to think before he does this to another person.  I remember an situation with the first Dr. I worked for, he was a very caring man and always listened, did testing indicated and so on.  We had a patient who complained of fatigue and flu symptoms for 2 mos.  The Dr.s father died 2 wks before this man started coming in....he treated this man for the flu, 2 more visits and he did not do the usual blood work he would have and it turned out to be Acute Leukemia, the man died, he probably would have anyway BUT 2 more months had passed by since his 1st visit.  This family called and then wrote a letter.  This letter changed him and he left his personal problems at the door from then on.  He always was very caring as I said but he listened before he dismissed a more serious diagnosis.

SO even if you decide not to continue with him, do it for the sake of the next person who chooses to see him. 

Just wanted to let you know why I said what I said.   I remembered this situation during my entire career and obviously still to this day.

XXOO
Patti

Susie, Patti, PAlady, Anice, Golitho and others, I am home from another day. The center was fairly slow so I got so much done. I tried to post here when I first walked in the door but it dissapeared. I wish part of my life would dissapear. Any Ideas? I have been trying to figure out what felt like a tear yesterday. The place on the back that is sore is between the spinal coluumn and the transmitter so it seems to me that is where they stitched the wires in place to hold them. The SCS still works fine so I will watch and I see my Drs on Monday and will have it checked out. The new med mixture seems to be working as I have not been up the last few nights. I can't remember the last time I had three nights without getting up. Good news indeed.

On the home front, my son who just arrived home from Boot Camp just received an invitation to join the 182 Air Borne in Iraq. It is a little stronger than an invitation. There is part that he is not fully aware of as he is not being sent to training with the rest of the unit but will just meet them in Iraq. He will fly there and not know one person there or in his unit. This is a new unit for him even though he has been in for about 8 months. Part of his unit are to work with the Marines as special forces.  All I can say is that he and I are dealing better with it then his mother. She is not sure why the Army does not contact the mothers first to see what they think. I am not sure that policy will get taken too seriously. My pain issues are now going to take a back seat at home as we spend as much time as possible before he flys out. That date has not been set but he knows it is soon. Hope all of you are getting ready for a restful weekend. I have to work tomorrow but will have Sunday off hopefully. Then on Tuesday, we are to head to Arizona for a week for work. I did try and put a couple days together just for us to relax. I will keep in touch.  

He won't go with us but will still be here when we get back so I will be trying to take some personal time after we get back. The CP affected him more than the 2 other kids. He said that was part of the reason he left before was he could not stand to see me hurt like I did. We have worked through those issues and knows it is part of life. When he heard what the PMS did after my surgery he wanted to go to my dr. visit with me. He has enough of his dad in him to make him determined.

How is the change in eating habits going? I get an upset stomach after taking my meds and often have had a bowl of cereal at night to settle it. Just the order not to eat for three hours before bedtime makes one think of nothing else except when I can eat my last snack. You are as strong as anyone I have met on this site. Have a great weekend.

I will try again. I guess you spoke too soon when you said that you have been sleeping better. I see you posted about an hour ago! I do hope that you can get to sleep soon.

I am really glad that you felt comfortable enough to share your story with us. You sure have come a long way. I see how dedicated you are to your job. And maybe that explains it too. You have been down some difficult roads yourself. You are teaching your students some of the very things you know they need in life. I am so proud of you. Don't be modest with us for your accomplishments. I think you are awesome. I have a great deal of respect for you. And so often you put your pain and problems aside so that you can help others.

I am sorry your son is being deployed to Iraq. I know this is a hard blow to you and your family to say the least. And yes, I agree with your wife, I think the Army should  have asked her permission for him to go! If you are okay with it, maybe you could give us his first, or middle or even a nickname so that we can pray for him while he is away. If you don't want to do this, I completely understand. I will simply pray for FatherJohns' son. God knows who he is. I know you don't want him to go either. And then again I am sure you are proud of him for going to defend his country. We all need to remember the men and women who put their life on the line everyday for our country. They are someones' son,daughter,husband, wife, etc. I will certainly make sure that I do this, especially now and that I do it continuously until each one comes home!

I am glad you are going on a little trip yourself. I don't know how far it is for you. Do you plan to fly or drive? Is your wife also going? I do hope so. And I am glad that you were able to take a couple days freed up to do as you wish. You do deserve a get away, even if it is work related. Maybe you can relax and take it easy on the days you were able to set aside. You certainly deserve it. You work so hard. Your students are lucky to have you!

Continue to keep us up to date as much as you can. I do like to keep up. I hope that you are able to get some sleep. I am wide awake. That is okay. I don't do it as much as I had been. I started the medrol dose pack today. And I have a horrible migraine headache. I think that is from the steroids. I'll be okay. And my son is coming home today. I guess I am excited about that too. When my head lights up, I'll go back to bed.

Anice