A Dip in the Roller Coaster Ride

It's so strange how this ride is going. Ray wakes up in the morning & usually feels like it's going to be a good day but unfortunately by afternoon his opinion has changed. A lot of that has to do with the daily trips to the hospital for various infusions & lab work as they monitor his status. Because his feet are still very painful from the swelling, blisters & rashes, being on them doesn't help the matter. And often the hospital visits end up lasting much longer than anticipated. This particular morning Ray did NOT feel like it was going to be a good day. In fact I was afraid that he might be re-admitted to the hospital before the day was over.

This past Monday during the night Ray awoke complaining of joint pain in his knee & in one of his fingers on one hand but he was able to tolerate it. Then Tuesday while at the hospital getting an infusion, his thumb too began to ache. That was very odd. The doctor checked it out but wasn't really sure what was going on. After returning home as the evening wore on, many other joints in his body began to cause him pain. By 1 AM he was hurting really bad in most of his joints (both knees, all his fingers, wrists, shoulder, jaw, etc.) The pain meds were not helping at all so I phoned the hospital. They doubled his pain meds but the pain was still so bad. The poor man was in agony & could barely get up, let alone walk. The joint pain was no longer tolerable.

Today we were at the hospital the entire day getting various infusions & lots of blood work done in an attempt to identify any problems going on. We won't have those results for a couple of days. In the meantime it was determined that a new medication Ray had begun taking just three days prior to the joint pain symptoms showing up, may possibly be the culprit. They immediately stopped that med & replaced it with something else. However it will take a few days for that particular med to clear out of his system before we'll know if that was indeed the cause. Let's hope it was & the pain stops! But dang it, he had a dose of it this morning before we went to the hospital so I suspect the pain will continue tonight for sure. They gave him some meds in an IV today that hopefully will help alleviate some of the joint pain, plus the increased pain meds to see him through. We were glad they did not decide to re-admit him but it may be another long night because it's now almost bedtime & he is still hurting quite a bit.

Other medications were also adjusted. Keeping track of the many many pills Ray must take is challenging to say the least! Mainly because they change daily. Stop this one, start that one, change the dose of the other one, etc. Makes the handy dandy pill box I have kind of a joke. No sooner than I have it all set up, I must go through & remove pills, add pills and/or reposition pills for a different time of day, etc.

The doctor told Ray today that he must work harder to increase his fluid intake. That seems to be such a struggle for him. I'm trying to be creative in the drinks & he's promised to try harder. Otherwise he'll need to continue the IV's to get more fluid into him. A new method we plan on trying, as suggested by the doctor, is for me to set out each morning the minimum amount he needs to drink (3 quarts) & then it's up to him to do it. Ray has agreed to that idea & understands the importance of it & that it will be up to him to get-er-done. I like that idea because then Ray can no longer claim that I'm 'pushing' him too much. All I can do is all I can do...

Ray understands that my 'pushing' is for his own good & even though he may occasionally get frustrated with me, that's rare & he truly is grateful that I'm here for him. He often tells me so. He knows it's out of love & concern that I keep on him to do the things he needs to do to get through this. That's my job.