not all who wander are lost.

Sunday, August 26, 2012

Moms latest Email Update

What insanity we have been through around here. Poor Paul has been in such pain (arms mostly- also legs) ,that for the first time since this saga began he was depressed. He was also losing faith in me, because too many times he heard me say , "Hang in there Paul, I am working on it." And I WAS working on it, but to no avail.
Anyway I made an appointment with a local Pain Doctor, but we won't get to see him until Sept 7th, possibly sooner, as I am at the top of the list for a cancellation.Since that was the earliest date, I figured I better push a little harder on HUP to give me something until we could get to that appointment. The morphine just wasting cutting it , plus I was pretty sure it was the reason he was so "out of it." Communication was awful , his mobility was questionable, and he was getting more and more depressed.
I pressured them with tears into sending me a script for something new. I also wrote an email to Dr. Desai telling her how "abandoned and disappointed I was the past few months. I was nice, but I was honest.They overnight-ed the script to me ,but when I rushed down to the pharmacy( in between dogs , while Paul was asleep, praying he wouldn't wake up) they informed me I would have to wait until Tuesday to get it. I left CVS, script in hand ,and went to the Acme. Thank God, one of my customers works there, and her and I have become friends over the years. She told me the soonest they could get it was Monday. She could see I was getting ready to crack, so she started calling EVERYWHERE for me .NO ONE had this liquid dilautin (spelling?) in stock. I have since learned a lot of things. Because people are so crazy about getting high, drugstores these days do not keep narcotics in stock.They are too likely to be robbed. If you go to a hospital ,then before you leave you need to get your script filled there.But, Hospitals can only sell Inpatient. For the most part, any narcotic you need will take days to get the first time, and after that they should be able to order it and have it ready for you the next time. But since they keep changing his meds, we were screwed. I left there sobbing, knowing that I would have to tell Paul I had failed him again.It was only Thursday and Monday was just too far away.
The next day his Uncle Paul came down, and his cousin Jimmy showed up for lunch. I had Nellie here to help , so I decided I needed to get some work done. They would let me know if Paul needed me. There are lots of things that Paul will not accept help for from anyone but me. Anyway, during that lunch I could see the discomfort on his face, and he mentioned pain a few times. Once he said to Nellie, "don't tell Doreen, she has enough on her plate." That was it.As soon as everyone left I was on the phone again.I tried our local General Practitioner , but no luck there.I called the pharmacy at HUP and started my story, and ended up crying, and Thank the Lord, I managed to get the nicest woman in the world who calmed me down and said, "This is what we are going to do..." She took the bull by the horns, and even though I told her I had called Karen and left a message, she said she would have her paged. They must need to answer those pagers IMMEDIATELY, because within a minute the Angel from the pharmacy said , "no problem, everything is ordered and we also got you the Fentanly patch." Now all we had to do was get there by 5:30. CAILIN TO THE RESCUE!!!! Cailin had been teaching yoga and giving massages all day and was looking forward to coming home and enjoying one of her only nights off. When I called her she was in Margate. It was 3:30 on Friday afternoon. She never hesitated, just said, "I am on my way." I prayed that she would make it there, drop the car in valet , and find the pharmacy before 5:30.
Here's an inside story about Cailin's rescue.Seeing as how she teaches yoga in some very colorful skin tight yoga pants, she changed into some shorts ( they were rather Daisy Duke-ish , meaning SHORT SHORT SHORT.) She is always barefoot, so when she got the call to go to HUP, she realized half way there that the only shoes in the car were her friends 5 inch heels that she had left there previously.So my brave little girl tottered in on her 5 inch heels looking a tad bit like a street walker , and even though she was getting stares from everyone she passed , she managed to pick up 3 different types of narcotics.
Well at 5:10, the Angel from the Pharmacy called me to let me know that Cailin had made it and was on her way home. Once again proving that there are so many good people in the world.
When she arrived home I woke Paul and I told him we needed to shower, which always is met by a less than enthusiastic response. Its just so tiring for him even with my help. This time though I explained to him that we needed to do it because he was going to get a Patch like Nellie's. That was all I had to say. He was ready to shower. I let Nellie put the Patch on him since she is the professional, and even though it wouldn't kick in for at least 12 hours I think the psychological boost was a big help.He has envied her that Patch for months and looked at it longingly and lustfully all the time. Hours after it was on, he would reach for it to make sure it was really there, and Nellie put his hand on it and he would smile.
That night he was already doing a tad bit better. Pain is so debilitating to both the mind and the spirit. And in this day and age it is so unnecessary. By Saturday we could see a marked improvement. The Patch is a real low dose which I am hoping they increase so he won't have to take the in between meds , but at least its a start, and it keeps the relief in his system for 72 hours.
With feeling better and being off that morphine Paul started "coming back". He was talking better, making jokes , and even though he said his arms still hurt, the improvement in the range of motion was incredible.
The King's made us an entire chicken dinner and came over and ate with us last night, and Paul was right there with us the whole time. He still has his moments , but we just all move right through them. He's not great , but he's better , and for now , better is okay.
Now I will go back in time at least a week to go over some of the thank yous and highlights.
Gary and Linda come down weekly to see Paul. Last week they arrived, as did Billy, and our dear friend Leslie , who is always known as Grape -picking/Survivor Leslie. While they were visiting, someone pulled into the driveway and I thought it was some nut doing a drive-by to have his dogs nails cut or something. I go out to see what the guy wants and Lo and behold , it is John Finnegan. He and Paul used to live together in the "Crystal Palace" a very looooong time ago.These guys had quite a colorful, exciting , funny history, and John really brightened Paul's day when he walked in.He was afraid he had walked in on a party or something, and I explained, "no, its always like this around here." They had an excellent visit and now John has joined Team Callahan and has been added to the update list.
Jay Hallus stopped by to visit with Paul this week and bought him over some Flounder. It was also a great visit and the fish was wonderful.
Of course our "regulars" keep us happy, positive, full, and entertained. Thanks this week to Deb, Mindy, Ruthann, Jude, Megan, Susan , Irene, etc who are forever supportive in so many ways.More ways then I can express right hereNellie and I are gaining weight due to all your efforts. The magic fridge is catching up on us. Trying to keep up with Paul's eating schedule is tough.Its kind of like being on a cruise ship. It is an endless feast.
I think that about catches you up on our lives at Camp Callahan for now. Take care, love, Doreen

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