Who'll Stop the Pain

Tuesday July 4th

Jon and I have spent this past weekend praying about and discussing some of the alternatives that we can follow in attempting to find someone who will take a really personal interest in helping Paul with his pain, which continues 24 hours a day, with very little relief. We haven't a clue if the shunt is working and the last neurosurgeon said he would see Paul in 2 months. That is not acceptable to us, nor does it seem humane to make Paul wait that long before the shunt is checked again to see if it is functioning as it should be.

I had gone onto the internet and found a site - Hydrocephalus Association, and got on their chat line and gave a quick summary of where we are in all this and I was able to speak to someone who lives in Savannah and is the spokesperson for the Southeast Region. He has hydrocephalus also, which was brought on by head trauma while he was in Iraq. He has had 4 revisions and was able to have a particular brand put in that has been very successful. He had the brand Paul has right now and said he had continuous problems with it. He said that it is used widely because the company that makes them pays doctors a fee for using them, unlike the one he now has. He said he was able to get relief from his headaches fairly quickly and after about 2 weeks, his shunt calibrated itself to the setting and he has had only 2 adjustsments to the shunt in the last 2 1/2 years. He explained that he also suffered from light sensitivity and hearing sensitivity after he had his first shunt put in. After a couple of years, the sensitivity to light and sound has lessened. He also said that he can't believe any doctor would allow Paul to remain in the pain he is experiencing, because he said that the pain is unlike anything he has ever had to live through. He said that the headaches are excrutiating and he was not able to work or do much of anything until he finally had his shunt functioning optimally. He now helps the Hydrocephalus Association by talking to people who register on the site and who are then referred to him by the woman who heads up this association. He gave me the name of his doctor in Savannah and the hospital where the surgery is done. He said he has referred 3 other people to this doctor and they were helped. We plan on following up with this doctor by phone to see if he would be interested in helping Paul and also if he will monitor the shunt more closely than what is being done now. We also got a reference to another neurosurgeon in Atlanta and possibly a second one. We also have the option of driving to Chicago to work with Dr. Ghaly. One big draw back to that is I may lose my job if I am gone for too long. We will talk to all of them and try to get a sense of how effectve they would be. We will continue to pray fervently to be guided in finding out................Who'll Stop the Pain. Please pray for us as we try to do and follow God's will.

Sunday's Gospel really struck a chord with us. As it was being read, Jon looked over at me and we smiled. It comes from the Gospel according to Mark.
"There was a woman afflicted with hemorrhages for 12 years. She had suffered greatly at the hands of many doctors and had spent all that she had. Yet she was not helped but only grew worse. She had heard about Jesus and came up behind him in the crowd and touched his cloak. She said, "If I but touch his clothes, I shall be cured." Immediately her flow of blood dried up. She felt in her body that she was healed of her affliction. Jesus, aware at once that power had gone out from him turned around in the crowd and asked, "Who has touched my clothes?" But his disciples said to Jesus, "You see how the crowd is pressing upon you, and yet you ask, "Who touched me?" And he looked around to see who had done it. The woman, realizing what had happened to her, approached in fear and trembling. She fell down before Jesus and told him the whole truth. He said to her, "Daughter, your faith has saved you. Go in peace and be cured of your affliction."
We talked about this gospel after Mass and how it reaffirmed our desire to continue with great faith, that our prayers have been heard and that in God's time, Paul will be healed. And while Paul has suffered at the hands of some in the medical profession, we believe that Jesus, in His mercy, will hear and answer our plea. Paul told us once again, that lately he has wished that God had brought him home because he suffers so much pain. But he added that since God let him live, he knows he has something to do for God and he will keep trying to get better so he can do it. I reminded Paul how blessed we all are in that we don't have to try to touch the cloak of Jesus, we can receive Him at Mass each time we go. While we have not seen, we believe. And from Psalm 30:
" Hear, O Lord, and have pity on me; O Lord, be my helper.
You changed my mourning into dancing; O Lord, my God,
forever will I give you thanks."

I will admit that I have cried so often in these last 7 1/2 months. But, we have prayed so much more often, always ending our prayers in thanksgiving for our ever increasing faith, for our life in Christ and for God's answer .......which will someday be revealed to us. We will be dancing!

One fun thing that Paul has started to do is to text message me a couple of times a day. Now that I am back at work, he will send me messages. Last night, Jon and I were able to go out to dinner with our friends and just about the time I was wondering if Paul was okay, I got a text message from him. He continually thanks Jon and I for our love and help. Another message he sends often is to see what I will be serving for dinner! He also uses his cell phone to call us downstairs. He will ask what everyone is doing !

He continues to notice very obscure things. I gave him a pill (which is the new prescription given to us by the neurologist who is working on pain management) and Paul said "Mr. Rose works there." I asked what he meant and he said the "A" logo on the pill looked the same as the company that Mr. Rose works for. He was right - Abbott. I had checked out the prescription to see what the side affects were and to make sure it would not interact with any of the other prescriptions and Abbott makes this pill.
I was thrilled that Paul remembered that, and totally amazed he would remember something from so long ago. On Sunday evening, we had Bev and Joe and our neighbors over for dinner and Paul leaned over and said to my sister, "you're missing the bun." Bev had fixed her hamburger, leaving off the bun so it would be less calories. She told Paul that she did it on purpose and explained why. He then said, "That explains why Uncle Joe's is the same." Bev laughed and said that was correct. On Friday, Paul and James came to the office to bring me my cell phone. Paul noticed that Bev had a sweater on and it was missing all the buttons. He asked her why all her buttons were gone. She explained that it was more like a sweater jacket, and it was not supposed to have buttons. He said he was wondering why a sweater would not have any buttons on it. Bev keeps that sweater at the office, since it is fairly chilly and I have to say, I have never noticed that ever! Okay, that may not be saying much, given my state of mind lately (smile) But I was really surprised Paul would even notice something like that.
One other thing that was amusing was when I told Paul I would be bringing his medicine to him. He asked which ones and I told him the red pills. He said, "Oh, the ones that don't do anything. I was hoping it would be some Tylenol." He is right about that. His headaches have not been helped at all with the prescriptions he has been taking. The latest one that has been added is not supposed to help right away. It will take anywhere from 2 - 4 weeks to become effective, if in fact his headaches are caused by post tramatic headaches from his brain injury.

One last thing - I do hope to clarify something that was commented on in the last posting. I truly do not want to mislead anyone by referencing something that has yet to be approved by the Catholic church. I mentioned Medjugorje and the message of conversion of hearts through prayer and fasting. It is true that the Vatican has not ruled on the events going on in that city, as it will not until said 'apparitions' cease. This site reflects our famly's personal faith journey and how we continue to strive to love Jesus more perfectly each day, through our growth in faith, hope and love. My relationship with Jesus and desire to live a more Christ-like life truly began after I heard these messages being given, (which are basically the same as those given at Fatima) in that we are called to conversion through our prayers and sacrifices and participation in the Sacraments. I guess I was 'ripe for the picking' at that particular time. We have continued to share our personal story because we have drawn so much strength from knowing there are people who are continuing to pray for Paul and our family in what is a difficult time for us. Mostly though, it is our hope that those who read this blog will gain as much as we have from reading what so many others have written. The comments are what I consider to be the most beautiful thing offered. This whole event has opened our eyes to how much we need to share our faith with each other and how we are connected as brothers and sisters in Christ, through Christ and with Christ. I know that everyone who reads this blog is not Catholic and while I draw heavily on my religious traditions and experiences, I know without a doubt, we are truly connected and responsible for each other as children of God. I use what is familiar to me and my family as I share our experiences. I will be happy to clarify or correct anything written that causes concern............... after I get some help with the facts from my son who has his degree in theology! He is a blessing to us.

The kingdom of God is within you! (Lk 17:21) Blessings to all of you,
Jon and Rebecca