Where to begin, eh? Has definitely been awhile and for that I apologize. Life's been.... interesting. Word on the prednisone front was that I was down to 5mg before last week. Not too shabby having to cut back down from the 40mg again. Now, though, we're on 60mg. Long story short is I ignored a cough for a week and a half and found myself in the ER and then checked into the hospital for a couple of days; totally not recommended. Post bronchitis lungs are at half capacity of what they were two years ago per my allergist so he re-upped my prednisone to a crazy 60mg for 5 days to try and get them jump started along with doing a crazy inhaler twice a day. Between the two it seems to be helping though the latter I found keeps me wide awake at night; at least if I do it right before bed. So, tonight I took my nice deep breathe inhale of it around 6. Is 11pm CST now. Sleepy as I didn't sleep a wink last night despite NOT doing the inhaler and best efforts of tossing and turning proving about useless on the nap time front. Really hoping to get in some good sleep tonight. Not sleeping is one of the bad things on my cardinals rules and tends to lead to my being overly goobish and emotional. Totally not fun. At least the crazy 60mg thing has brought my appetite back after a couple weeks of nauseousness from the whole bronchitis/not enough oxygen/migraine headache thing. The last two were heck on the tummy and trying to eat. Ugh. Thankfully, going to drop back down to 5mg of prednisone tomorrow. Then... well, I'm debating just cold turkey and forgo the 1mg/week thing I'd been doing to get down to 0. I'd like to think 5 to nothing isn't that big of a jump since I'd done 10mg drops before to get down to 10. Don't know. Still have a day or so to think about it. Just want off this stuff so badly. Should have seen me when the allergy doc, Dr S, told me that he was going to have me taking 60mg. Yeah.. those were tears. He looked at me like I'd grown a second head. I explained to him that I'd finally gotten down to 5mg... and it's taken me SO long... since May 2009 to be exact, to get this far. He said it was only for 5 days, but I know what that can do. Especially since that was 20mg more than I'd ever taken at once before. Only took 4 weeks last summer to gain 20lbs at 40mg. Was terrified what 60mg was going to do to me. Yes, now that I have a drug induced appetite again I'm eating which is better than the not eating I was doing before thanks to tummy issues from yucky migraines from lack of o2, but still not happy. Was at 208 this morning. Was at 202.5 when I got out of the hospital before. Think that was the 20th. The lung doc at the hospital who was kind enough to sign me out and also told me I didn't have pneumonia but instead bronchitis had me on Levoquin (sp?) for 5 days after I left the hospital. Cleared up the last of the bronchitis, thankfully. Never know how much you need o2 till you don't have it anymore *shudders* Anyways, lowering the prednisone. Think I'll try cold turkey. If it hurts, can always take it again. Have plenty left and found some more of the 1mg's the other day in the bottle that's expiring end of Sept; will use them first if I have to. If I can hack being off the prednisone, going to approve Dr P and see if I can drop either the plaquenil and/or methotrexate and see if I can do without one of both of them and let the Rituxan be enough. Please Lord let it be enough. Though I believe post-hospital bills will take care of my deductible for the rest of this year so shouldn't have to pay for more medications, still would like to have less to have to fill the cabinet with and have coursing through me, ya know? Points for effort. Some day I won't be a walking pharmacy. I keep telling myself that. Really want it to be true. Really wish my hair would stop falling out too from the methotrexate, but that's another rant. Next time the spare change fairy hits me and M are going to have to come up with a new hairstyle for me. Current one just doesn't work with how thin my hair's gotten the last 8 months. I dread making it shorter, but it's so obvious how thin its gotten even just at shoulder length. ... Worries for another day.
Lots of details left out. Know I've had the blog in an effort to take down everything in lots of detail, but this is what I get for putting it off. Promise myself now I'll take more time to post in the future. Barely walking into the ER a couple weeks ago wasn't quite sure how many more of these I'd be making. Note for self-preservation: when you're not getting enough o2, GET IT CHECKED OUT. Totally not worth waiting till you can't walk/talk/breathe/sleep/eat in any combination. Bad juju. I have reaffirmed that I know my body better than anyone else out there. Next time it tries to tell me something is wrong, I'll listen earlier and get it seen earlier instead of waiting and hoping it goes away on its own. Cause thanks to this whole 'lowered immune system' thing from the Rituxan, it's likely to not go away and more than likely get worse the longer I let it go. Don't do as I do, do as I say. *grins* Least that's what mom always said. Except from now on think I'll take my own advise and get checked out. Hooray insurance. I've discovered that copays are nothing compared to what the real charges are before I get the post-insurance bill. Thank God for insurance. Which reminds me, won't have Humana next year. D's getting rid of it as an option and leaving me I believe with Aetna that I've heard horrible things about and United Healthcare Choice Plus or something like that which I currently know nothing about. Things come open for choosing beginning of Oct so waiting to get info from D. If anyone's got an opinion one way or another about either could use any insight that can be provided. Hate the thought of changing as I KNOW right now what I have to pay to who and who takes what and have had no problems so far with Humana the last two years and claims going through insurance. No fuss, no fighting, nothing. Can only pray whomever I choose for next year I have as good of luck with.
Otay, ended up being a crazy long update after all and mostly my rambling again. Thanks for listening. I'm sure there will be more soon. World's probably going to change either for really good or really bad here really soon; next couple of weeks. Here's hoping for the really good.
*hugs*
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