Tried posting this before, but I'll try again...
I had my RD appt last night, and not a moment too soon. The past two days have been some of my worst for pain and I was crying in his office.
I am not going to wait until November to start the Rituxan. RD is confident that I won't have problems with it, so I'm trying to schedule the first infusion for the week after next. I'm scheduled to go on vacation to Florida next week, but I'm not sure I'm going to go for two reasons. One, I'm feeling miserable physically and the plane ride, heat and humidity aren't going to help. Two, hubby and I are having a serious fight...we haven't talked for days, and when I tried to talk to him about our trip last night, he said he was going with or without me and he'd prefer to go without me.
Anyway, back to the appt. Since the Percocet wasn't touching the pain, he gave me Dilaudid which is helping better. But for some reason he gave me the 4 mg tablets and told me to take a half a tablet each dose....problem is the tablets are tiny and aren't scored. When I broke one apart last night, I got 60% of the pill on one side and dust on the other. I don't know why he didn't prescribe the 2 mg (maybe there's a limit on the # of tablets he can give me?) but the pharmacy is going to try to fix it with him today so I can get the 2 mg tablets.
RD also gave me the scripts I requested for aquatic PT and an updated bone scan.
Overall, I feel better that I have a plan. Now I just need to decide between now and Saturday whether I'm going to Florida. If not, maybe I'll move up my infusion to next week and then rest at home with some real peace and quiet.
Oh Suzanne, I can so relate to where you are coming from. When my hubby and I fight the pain flare is so intense. It reminds me of a few years back when we were going on a holiday to kangaroo island to visit my hubbies sister. Well I was in way to much pain to go, but he was going regardless. So he took our two boys and my daughter and I stayed home. No sooner he was away he was calling me all the time to see how I was. They do care, but sometimes they really make us wonder. I hope you figure out whats the best thing for you to do and all the best with your first infusion. By the way the break did us wonders. we realised that we dont like being apart.Suzanne - huggles and good luck ~~ Cathy PS That was weird about that Forum post - maybe you had EXACTLY the same subject line and it duplicated? Beats me.
Suzanne, I'm glad that you're starting the meds sooner than later, especially since the flare has worsened. Sometimes life goes on hold until you start to feel better...believe me I know. My life is on hold right now till I'm on the right course and feel as good as it's going to get. Each day is better for me and I figure by April my life will be back on course and we'll head to Mexico. We should be getting ready to leave in 3 weeks but not this year.
Can't help you with your spouse, all I can say I'm sorry that it's reached the silent stage. You have to do whatever will make you feel better. Lindy
You know my father used to tell me about his first wife (before my mother) and how she wouldn't talk to him for days and I couldn't even comprehend that. Now that I'm living it, it seems even stranger. In my family, no matter what kind of fight you have, it blows over fairly quickly, or at the very least, you keep talking (if only to keep making snide remarks
If there is a time apart, I hope that it ends up being a good thing, like it was for ally. I know one of our issues is that I never have time alone at home...he works a flexible schedule, so he's always there when I get home and he doesn't have any appts, activities, etc. It's interesting that generally I tend to need some quiet and time alone while he tends to need more togetherness and talking, but when he's upset, he goes to the opposite extreme. By the time we make up after a fight, he's saved up days of talking and can't stop!
Suzanne, I am so sorry about the fight, and can relate. Maybe time away is just what you need. You need to feel better and he needs to think.
Just know that we are here for you. I am excited that you will get your infusion earlier. That is wonderful. I hope it helps. Stress does help a flare along...I am so sorry!!!
Take care...shel
I think if you can manage it physically you should go on that trip. A different environment and a bit of relaxation might do wonders for how you feel physically, and the shared experience will likely whittle away at the stress in your relationship, put some plain old fun into it, and make happy memories.
But, since I don't really know your situation, maybe I'm all wrong about it. It just seems like if he goes without you, you'll both regret it, and then you have regret added to the mix.
I agree with Linncn. Unless you know you'll be absolutely miserable with pain, I'd try to go. The change of scenery might be a good distraction for your physical and marital woes. Since your husband seems to be supportive most of the time, I don't believe that he would really rather go without you. I think that was anger talking.On one hand I agree that not going itself might become a problem for us, but on the other hand, I am very leery to go if he is going to continue acting this way. Here I have the comforts of home, my own car, and my parents 20 minutes away if I really need help. There I will have a "foreign" bed, not much space to put between us, one rental car (and he drives like an idiot when he's upset), and no prospect of help if he isn't cooperative.
It's scary, because the other night, for the first time, I didn't think I was going to be able to undress myself. It always hurts, and he usually helps, but it took a lot of tears before I was able to get that darned painful bra off. He was just lying in bed saying/doing nothing.
I am hoping in the next 48 hours he will decide he's had enough, since I apologized for my part in the argument days ago.
Oh, Suzanne, I am sorry you have extra stress at home, it's never good for our bodies apart from anything else.Big boy pants...I should buy him some of those!
Honestly, I believe part of it is that he is very, very sensitive (both a good and bad thing), but the other part is his uncontrolled and untreated diabetes. He has not gone back to the dr and is no longer taking the medication, which at best was not very helpful with his glucose level. I believe this combined with his trouble sleeping is severely affecting his mood. I was reading about a study, particular to older men with diabetes, that suggest when they go through andropause (male equivalent to menopause...shouldn't it be womenopause?) and they have high blood sugar, that their mood swings can be come severe and they can display unusual aggression. I wish I could get him to work as hard treating his medical conditions as I do mine, but...you can lead a horse to water but you can't hold his head under!
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