Yesterday was horrible. He woke up with his right hand so swollen and painful, he couldn't use it at all. He was supposed to watch our 6-month old grandson all day, but I had to go to work late so I could help in the early a.m, and luckily one of our daughters was available to spend most of the rest of the day with him. He's miserable. But, I'm wondering, should a painful hand--just one hand--put a person in that much distress? I feel bad for him, but he's depending on me to do everything, aside from assisting him with his bathroom needs! He was on prednisone for a couple months, but his doc took him off it a few days ago because his fasting glucose was at 140. His rheumy recently doubled his gout med. He started Plaquenil 3 days ago--they think he has RA, or possibly PsA.
He was on 12 various meds before starting the Plaquenil--for blood pressure, high cholesterol, fluid retention, gout, asthma or copd, and who knows what else! Now the Plaquenil, too.
I'm doing okay today, but yesterday my shoulders hurt from lifting the baby too much the day before. But my pain is never--has never been--even when I was untreated for PsA-as bad as his. He expects me to do everything-he basically becomes helpless. I guess I'm a little confused about how a painful hand can totally shut a person down. Yes, he's horribly overweight--I'm sure that causes him distress, but that's something he could and should fix.
I just needed to rant and see if anybody has information about Plaquenil. I have to get ready for work now.
I liked plaquenil but it does take time for it to work, in the neighborhood of a few months.
It’s really hard to know just how bad someone else’s pain can be. Remember also that emotional state can play a real role in how pain is interpreted. I know that there are definitely days where I have different levels of pain tolerance.
Oh GrandmaJ, I can not even fathom the idea of what it must be like with you both having PSA symptoms and pain, or similar diseases. That puts a whole new twist to expectations of each other and I already know how imbalanced they were to begin with.
I would sympathise with your husband in that the swollen and painful hand (which I remember well) is new and scary. The movement of the hand is so intertwined and I do believe there are more nerve endings than in feet but both deliver alot of pain in different ways.
You have to be having trouble contemplating how he can do so little and you so much having such similar maladies. I get it And your feelings are valid. I do think it maybe time for you say enough and expect similar support from him but when a person is used to being aloof to your needs you will need to make yourself assertive and resist “doing it all”. That is probably going to be a very difficult thing on your part and I say that lightly. It’s like advocating for health with doctors unless you really say 'no this is a problem" but only with compassion mixed in, after all he does know how you feel first hand but most doctors do not.
This is going to be a whole new chapter to your lives and I can’t imagine the ups and downs it will bring but I do know you can’t bottle all those feelings in and am so happy you let them out. We are here for you and I personally hope you continue to rant a bit, keeps a person sane! I also think it’s time for a day off, maybe pj’s all day long, that always helps me remember to relax and not do anything when I know I need it. Good luck!
I know nothing about panquil sorry!
Ok, sorry, I guess I wasn’t done with my “book” yet, lol! I also wanted to say it does sound like he is still very much in the gap phase. He hasn’t found his “Enbrel” yet or anything that sounds like a balance, which is a very unfavorable place to be as we all know. I bet once he starts to get closer he will come around or at least be more self reliant. Unfortunately, time goes so slow with disease waiting on diagnosis, waiting on meds, and yet life whizzes by do fast. Hopefully things will get better soon. Take care!
I know what you mean, Stoney. I also know from living with him for 42 years that he has a very low threshold for anything, and before all this illness, as we were raising our kids he was forever crabby and complaining about how horrible life was. If I told him once I told him 1,000 times he shouldn't complain because, just look around, life could be a hell of a lot worse! And it did get worse....
This is very hard on me--we were at odds about everything, it seemed. I would tell him to try not to use so many pain meds because they weren't good for his vital organs. But, he'd thumb his nose at me and tell me I was crazy. I was only looking out for him, but he didn't appreciate It.
It's just so hard seeing his health deteriorate so rapidly, and know it wouldn't have had to be this way!
Stoney said:
I liked plaquenil but it does take time for it to work, in the neighborhood of a few months.
It's really hard to know just how bad someone else's pain can be. Remember also that emotional state can play a real role in how pain is interpreted. I know that there are definitely days where I have different levels of pain tolerance.
Thanks, Rachael. I appreciate your kind words. No matter what, when you've been in a relationship for over 40 years, there is concern about the spouse despite a lot of difficulty in the marriage. And you know we are working on getting along better. For others who didn't know, our relationship has not been good. It got to the point where 2 of our adult daughters (30s) came to us and begged us to try to get along with each other. One of our 11-year old granddaughters was actually so worried we were going to get a divorce, she was crying about it. :-( That's when we decided to "grow up" and work on getting along. So, we're trying, and it has been going better.
I appreciate you being okay with my ranting. I really feel like this is the only place I can do that. Dave hasn't a clue half the pain I had from PsA or half the pain I have now. I usually don't bother to tell him much because he doesn't treat me like he cares at all. He isn't afraid to complain about his stuff, though. And I tend to be overly sympathetic and a natural worrier with a guilt complex. His hand was starting to feel a little better later in the day.
We'll see what the future holds. It won't be too bright if his health continues to spiral downward. I'm hoping we can fend off anymore flares and get his gout and whatever type of arthritis he has under control.
Rachael said:
Ok, sorry, I guess I wasn't done with my "book" yet, lol! I also wanted to say it does sound like he is still very much in the gap phase. He hasn't found his "Enbrel" yet or anything that sounds like a balance, which is a very unfavorable place to be as we all know. I bet once he starts to get closer he will come around or at least be more self reliant. Unfortunately, time goes so slow with disease waiting on diagnosis, waiting on meds, and yet life whizzes by do fast. Hopefully things will get better soon. Take care!
GrandmaJ, I hope you understand I had no intention of diminishing your concern about his condition. You have many years over me and John at only 15 and of course you worry about him. " Overly sympathetic and natural worrier with a guilt complex" now wonder we are friends! I am just concerned that you confuse working on getting along better with doing everything. I see you two like a fencing match, classic dueling, dancing around each other until someone makes a jab. It’s beautiful in some ways and painful in others. As long as you dance and move smoothly you can anticipate the lunge. You said what I was trying to convey so perfectly when responding to Stoney, you see how quickly he is deteriorating as preventable as if you are responsible for it. He is responsible for making those changes you can only offer support and you do that above and beyond! I know things are rocky and it was hard for me to candy coat my response some somewhat so that everyone didn’t think I was being rude since I knew the story you shared already from our private conversations. I love that you have so much concern for your family and just hope you can try to balance your needs, even just a little, so that you can continue to be the strong person so obviously are!
Rachael, not at all! We'll be OK. I think I "mothered" him from where his own mother left off. And, that was great for him. It was a huge mistake on my part. But, anyway, about his being on Plaquenil and stuff, I'm trying to read up all I can find about it. He's so different than me that way. I had PsA for 6 years before I agreed to treat it with Enbrel--I read and read and looked into all of the meds--Dmards, Nsaids, biologics, and tried all the natural stuff first. It was really hard for me to start putting strong meds into my body. For me, I think it's been a good outcome. Yeah, I have some damage, but he has terrible damage--liver, kidneys, joints, now gout from bad kidneys....weight problem, potential diabetes. He's not afraid to take any med--he never knows what he's taking, and has a few times even had adverse reactions from combining the wrong meds (a perfect example was the grand mal seizure from tramadol and bactrim).
Oh well, I'm sure deep down he knows he's done many things over the years that contributed to his poor health now. I'm not going to put salt on his wounds by reminding him of that. We need to move forward and get him feeling better. I'm going to encourage exercise--we do agree that's important. But, its so difficult when you don't feel good. :-( Neither of us has been to the gym for 10 days! So, we're gonna need to make an effort.....
It's so tricky. I too think the way forward, the obvious way forward, is to let him get on with it. But that's not so easy when you've developed a certain way of relating over 40 years or so, especially if there's reason to think he might lose the plot with the meds and endanger himself. It's so worrying for you. He's a lucky bloke though.
You won't do this, I don't think you'll do this .... but what I might do is take myself off on holiday for at least a fortnight, preferably longer. Doing that is very, very different from getting a divorce. Your husband's an adult with a courageous missus and I wouldn't mind betting he'd step up to the mark after the first week during which he'd probably sulk (well, I would in his shoes!)
Anyway, back to probable reality, I think it's very positive that you both agree on the need for exercise. It must seem to you that there's a long way to travel but for him to even think that way, with all the physical challenges he faces, that is progress and kind of impressive.
Thanks, Sybil. You are so wise. Figures you were a teacher!
Well, the holiday is something that will happen in a few months--March or April. Our youngest daughter is graduating from her internship and she landed herself a job--in South Carolina!!! She'll be the only child of ours that took such a bold step and accepted a job in another state--it's about 21 hours from us by car!!! So, already Jamie and I and her 4 kids and maybe her husband will be going on vacation to SC during spring break!!! :-) There's no way Dave will come along-he's had his fill of long road trips, and he won't fly there. Thank God for facetime!
But, anyway, yes absence really does make the heart grow fonder. When we're away from each other we always get along better by phone haha!
I think he'll be dropping weight fast now. Since he started Plaquenil he doesn't feel hungry at all. We did go to dinner at our favorite restaurant tonight and we both ate like pigs, but that's because the food is superb and we all but lick our plates clean when we eat there!
Maybe we'll exercise some of it off tomorrow--after the football game, that is!
Sybil said:
It's so tricky. I too think the way forward, the obvious way forward, is to let him get on with it. But that's not so easy when you've developed a certain way of relating over 40 years or so, especially if there's reason to think he might lose the plot with the meds and endanger himself. It's so worrying for you. He's a lucky bloke though.
You won't do this, I don't think you'll do this .... but what I might do is take myself off on holiday for at least a fortnight, preferably longer. Doing that is very, very different from getting a divorce. Your husband's an adult with a courageous missus and I wouldn't mind betting he'd step up to the mark after the first week during which he'd probably sulk (well, I would in his shoes!)
Anyway, back to probable reality, I think it's very positive that you both agree on the need for exercise. It must seem to you that there's a long way to travel but for him to even think that way, with all the physical challenges he faces, that is progress and kind of impressive.
I'm still marveling that South Carolina is only 21 hours away from you. I mean, you're near the top, and S.C. is getting near to the bottom, of what to me seems like an enormous country.
Good luck to you both.
Grandma J said:
Thanks, Sybil. You are so wise. Figures you were a teacher!
Well, the holiday is something that will happen in a few months--March or April. Our youngest daughter is graduating from her internship and she landed herself a job--in South Carolina!!! She'll be the only child of ours that took such a bold step and accepted a job in another state--it's about 21 hours from us by car!!! So, already Jamie and I and her 4 kids and maybe her husband will be going on vacation to SC during spring break!!! :-) There's no way Dave will come along-he's had his fill of long road trips, and he won't fly there. Thank God for facetime!
But, anyway, yes absence really does make the heart grow fonder. When we're away from each other we always get along better by phone haha!
I think he'll be dropping weight fast now. Since he started Plaquenil he doesn't feel hungry at all. We did go to dinner at our favorite restaurant tonight and we both ate like pigs, but that's because the food is superb and we all but lick our plates clean when we eat there!
Maybe we'll exercise some of it off tomorrow--after the football game, that is!
Sybil said:
It's so tricky. I too think the way forward, the obvious way forward, is to let him get on with it. But that's not so easy when you've developed a certain way of relating over 40 years or so, especially if there's reason to think he might lose the plot with the meds and endanger himself. It's so worrying for you. He's a lucky bloke though.
You won't do this, I don't think you'll do this .... but what I might do is take myself off on holiday for at least a fortnight, preferably longer. Doing that is very, very different from getting a divorce. Your husband's an adult with a courageous missus and I wouldn't mind betting he'd step up to the mark after the first week during which he'd probably sulk (well, I would in his shoes!)
Anyway, back to probable reality, I think it's very positive that you both agree on the need for exercise. It must seem to you that there's a long way to travel but for him to even think that way, with all the physical challenges he faces, that is progress and kind of impressive.
I wish you could come visit this enormous country sometime, Sybil! But, it's probably like me visiting the UK--not gonna happen! :-(
It's fun planning a trip. We'll rent the 12-person van like we did for our Black Hills trip. Minus Mr. Crabby we'll have a blast with the kids. If you remember, he made that trip a horrid experience for all--so bad that little 6-year old Sunny refuses to go places with us anymore. The only thing I worry about is a sore back, but as long as I get out and stretch every couple hours I'll be fine.
Gonna miss our little girl and her 4-year old daughter, Finley. That's why I say thank God for FaceTime!!! They've been staying here weekdays the past 6 months while Anne was doing her internship so we could take care of Finley--she only has half-day preschool and Anne had long days. My life will change a lot after they leave!
I reckon it will happen, I've always wanted to travel to the US. New York, I suppose and New Orleans .... I think I might find Utah interesting, is that where Salt Lake City is? And I'll turn up on your doorstep ....
Isn't it past your bedtime, Sybil??? Or are you like me--up all hours of the night???
I've never been to any of those places. I'd be interested to know why you choose New Orleans and Salt Lake City. I have some suggestions for you, but Idk what you're mostly interested in. I'd love to visit NY, too, my daughter said it's awesome, but wouldn't want to live there.
When we went to the Grand Canyon in AZ, there were more foreigners than Americans! But, there are other places just as beautiful as the Grand Canyon. I tend to think the Black Hills are quite scenic. I'd love to see the English countryside--I imagine quaint beauty.
It'll be fun seeing the Atlantic Ocean, maybe swimming in it, too! She'll be 3 hours west of it, but we'll definitely go to the beach!
So he asked his doctor for prednisone and he's been on that for 4 days now (2 x 40mg and 2 x 30mg so far) and it doesn't seem to be working, the hand looks horrible. He started plaquenil a few days ago, too, plus his doctor had doubled his gout med. He's taking tons of ibuprofen, and none of these meds are helping!
The orthopedic hand specialist supposedly told him a few months ago he'd need surgery in that hand. He had kienbocks disease in his left hand years ago, so maybe this is keinbocks, too. So he made an appointment with him--unfortunately he can't get in until December 4. This is just crazy. The pain is limiting him so much. It's not going to be a very happy Thanksgiving this year--at least not for him. :-(
I spent almost the entire day (again) trying to figure out what medicare supplement to choose for him. There are so many choices, it's mind boggling. Listing his meds--he takes 12 different meds each day, some 2 x a day--7 YES 7 of them are cardiovascular meds!!!!!!!!!! To me, that is just nuts! I would tell my doctor to figure out what 2 or maybe 3 of them would do the job! The co-pays for all of these meds become astronomical (okay not quite--but really a lot) during the coverage "gap", the man on the phone told me. The gap starts mid-year for Dave and goes through December. It's depressing. And, it was so sad just looking at that list of meds he takes--IDK how he can keep this up!!!
As far as the supplement, I was sold on the Blue Cross/Blue Shield Platinum Blue with Rx "Complete", but then I started having doubts about that. It's one of the top choices so we wouldn't have any unexpected medical costs, but the monthly premium is higher than the others. I guess it's worth it for the peace of mind. I went through a whole day about a month ago of trying to decide whether or not to take him off my insurance--that was stressful enough--I can't wait til this decision is behind me!
Anybody have any background to share about Medicare supplements, I'm all ears!!!