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I had to increse prednisone

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Posted 10/1/2008 10:40 PM (GMT 0)
I've been flaring for the past few weeks but have put off calling my rheumy or increasing my prednisone.  My flare finally got so bad on Monday that I called my rheumy who had me increase my prednisone and I can go up higher if I need to.  The increase has helped some, but I haven't had much time to rest, so I'm still not feeling great.  I think my ulcerative colitis is also flaring. It's the same old story for me.  My husband's job is very demanding so he's not home until just before the kids go to bed and my kids are invloved in activities and I do all the daily stuff like supper and homework and baths.  My husband is great when he's home, but he works at least 12 hour days.  I am thankful that his job allows me to be able to stay home and not work. There's just not much of an end in sight for being busy.  My daughter dances several times a week and I love taking her and watching her dance.  She starts physical therapy next week for heel trouble and then we have to take my son to a pediatric rheumatologist next week for his arthritis and the closest one is 3 hours away. Like I said, there's not much I can do, except to make myself rest more during the day when the kids are at school and try not to stress about the house being a mess or about laundry getting backed up.  Thanks for listening to me complain.  I also know that I'm blessed that as of right now, my flares don't involve any major organ involvement.
Posted 10/2/2008 12:38 AM (GMT 0)
*Rosie mumbles under her breath . . . "Ummmmmm . . . your colon IS a major organ." * Watch out Hippi. That UC can perk away w/o telltale signs and could be doing damage you are not aware of. In other words . . . take care of yourself. When my kids were little we had no choice but to limit the number of extracurricular stuff they could take part in. They also participated (even in the lowest grade levels) in finding some means of carpooling and then I would do the telephoning and arranging. It amazes me sometime to think that we were quite far from everything and yet there was a ride-share living near enough to make it work. I just don't want the 'mommy guilt' taking you down with it . . . then the kids will really be stuck. Sounds harsh . . . but its just the truth for us. Sorry you are still in a rough patch. *sigh* I hope you get feeling better before the holidays. Blessings!
Posted 10/2/2008 2:23 AM (GMT 0)
Hippi,
So sorry you're not feeling good right now. I am praying for you! Take care of yourself. Judy
Posted 10/2/2008 3:55 AM (GMT 0)
Hi hippi, well I guess I should have seen this before I replied to the post you left me. Dog gone it! I was hoping you were getting better. I just wish there was someone around to help you more. I know your kids aren't babies but they still need a lot of help. Like Rosie said though no mommy guilt you need to take care of yourself. Do you have someone to help you on the weekend? You have not only been going through this for the past couple of weeks you have basically never not been going through this other then a few weeks here and there. You need to get more rest or different meds. get some other mom's to help out with the dance classes and ball games. Your kids are old enough to understand even if you don't want to. You would tell us all to take care of ourself so you need to listen to your own words! I hope the steroids help but you need more then that.
Ok I'm done witchin!
love you
carol
Posted 10/2/2008 1:46 PM (GMT 0)
Thanks Rosie, Judy and Carol. I know I sound like a broken record sometimes. Whenever I flare, it's usually because my family is going through a really busy time without many breaks. At least soccer is over, so now the only activity my kids have is dance (my son is actually taking a dance class with his sister). On weekends I usually crash and my husband takes over (I feel a little guilty about that too). The prednisone is helping and I just have to make sure I don't try to taper back down too fast. Until this recent flare, I had 4-5 months of doing pretty well with a rough spots here and there, so hopefully I'll get back to that point again. Rosie, thanks for the wake up call about my colon. Do you find that any foods help when your GI stuff is flaring? RIght now I'm pretty much just eating cereal and oatmeal.
Posted 10/3/2008 1:01 AM (GMT 0)
Hippi, The folks at the Crohn's forum have said that while they are flaring they eat non-fibrous foods including white rice, mashed potatoes, bananas, boiled chicken, and meal replacement drinks like ensure and instant breakfast. I find, that when I'm flaring, even water causes trouble. So I really real for you. I just try to eat extremely light. I'm so thankful that things have been quiet down there. *phewwwww* You might stop into the Crohn's forum and peak at some of the posts about food. It varies greatly between members as to what they can eat when flaring. Blessings!
Posted 10/3/2008 1:32 AM (GMT 0)
Again, I hate that you're flaring hippimom -- you might want to plan ahead and take 2-4 mg extra pred when things get busy at home BEFORE you start feeling so crappy? Just a thought & something to ask the doc about .
Posted 10/3/2008 5:07 AM (GMT 0)
Sorry you aren't feeling well, hippimom. And prednisone is such an up and down thing. I pray you get some bursts of energy or that the kids can help you. My mom was in an auto accident when I was eight and my dad HAD to work and he was on the road alot. My sister was eleven. My grandmother helped some, but my mom was paralyzed and had her face wired together so she was really bad off. Anyway, we learned to do alot. Sometimes kids like to help, especially if you can do a little allowance thing. I know they have problems too, but like the others say, if you get bad, then the kids have problems.

Having had one polyp already (I got told I was way too young for this stuff, like duh) I think you should try to get checked out. You might be right, but if you have an infection or something things might get worse. Rosie is right that the colon is a big deal and seems esp. vulnerable. Do we ever catch a break? Anyway, I wish you and your family the best during this difficult time and hope you can rally some help from the kids.

One thing I'm doing is simplifying my house in advance. I'm saving for a side by side frig and stackable washer dryer because bending over is hard for me. I'm also doing low dust, low maintenence, so cleaning is easy. Its a process and I've had to get rid of a lot of knick knacks, but I just can't manage it all anymore and stuff is just gathering dust and creating stress. I made my bf and son do the same thing and they didn't seem to mind. Anything you can think of to simply life and make things easy---cooking in advance and freezing cassoroles, cooking a lot at once and freezing, prepared foods and sandwichs, anything to make life easier. Alot of that stuff is expensive, but there's come a point, at least with me, where my priorities have to shift from home maintenence to living and enjoying life.

So I understand completely. I hope you feel better soon and that everything is okay.
Posted 10/3/2008 10:38 AM (GMT 0)
Hi Hippi. I'm so sorry you're having such a rough time. I think Rosie, Carol, Marji and Lynn have some great suggestions. I have one more: have you tried methotrexate, imuran, or cellcept? I've been on each of them to help control lupus. Just last week, I told my rheumy that I tried decreasing my pred from 7mg to 6mg (the crucial dose when adrenal glands kick in) and I flared. I've been on 2 grams of cellcept daily since January. Rheumy advised I increase cellcept as tolerated until I reach 4 grams daily and then decrease the pred. My point is, prednisone isn't the only drug in our arsenal as long as you're willing to try something different. Regarding the other suggestions, mommy guilt is a hard thing to break. I know you want your kids to have the best life possible. I wasn't able to break mommy guilt and now I'm in sucker parent mode: supporting my 23 y/o daughter and fixing all her problems. BTW "sucker parent" is the term my shrink called it and she said I must force Tory to grow up for her health as well as mine. I'm working on it. Try to take care of yourself Hippi. I'm sending you lots of positive energy, prayers and much love. Butterflake 

Posted 10/3/2008 1:51 PM (GMT 0)
Thanks Lynnwood, Marji and Donna, and thanks Rosie for the food ideas. Lynnwood I like your idea about planning in advance. I know I'll get through this flare. I looked ahead on our calender and it looks like things should slow down a little bit in about 2 weeks. Until then, I'll adjust my meds and get extra rest. I've been doing better about laying down after lunch and resting/sleeping until the kids get home from school.
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