My hospitalization is scheduled for this Sunday. I will be going in for a tune up with IV therapy and an embolization. I'm excited and scared at the same time. Excited that I may be freed from this bleeding that has become such a part of my everyday and scared on a lot of levels...mostly infection control related. I mean seriously I bag up all of my belongings (purse, coat, etc.) when I go to clinic and now you want me to spend the night (at the adjacent hospital) and eat there? I only hope the nurses aren't like the other people in the service industry here. Rude, ignorant and mean. I'm also a little worried to do with the embolization. And of course leaving my son for the first time won't be fun....or will it?!
I'm trying to think about people like Amy and Melissa who I respect who have stated in the past (not sure if this is how they feel now but that's a moot point) that a trip to the hospital allows them the rest from life that they need. I have too much going on in life right now and this is part of the reason I have failed on lung clearance at home. Don't get me wrong I'm 100% compliant with my Vest and I use the acapella 3x/day but since having my baby working out 3x per week is not enough. I know I need to workout every day but it's been very hard to fit it in. Also I probably need to be doing a mid day neb (that's a big commitment).
I finally gave up my cool gym membership and joined the rehab center in the bldg. that I work in. The toss up is I no longer go to the classes that motivated my workout to beyond my capabilities on a regular basis which was so good for my lungs. Now I can squeeze in a 15-20 min workout between conference calls.
I'm afraid I'm just trying to do too much. And as much as I try to control cf like everything else on my checklist ~ it just doesn't always like to be scheduled like that. I'm hoping by taking this agressive jump I can regain control and get on a routine that keeps me feeling good like I've balanced in the past.
I look forward to being on line with you all next week and working on my taxes in the hospital (strange as that might sound). Anyone else get scared of the thought of all the free time? I'm bringing books and other stuff but it's sort of daunting and again germy.
My doctor who knows I'm a bit of a control freak said to me Monday night. "Lauren this isn't going to be on your terms and by your rules." WTF is that supposed to mean? Shucks and I was thinking about making a "Get Well Plan" sort of like a labor & delivery "Birth Plan." J/K. And a few other statements that drive me bonkers when I replay them in my head. Such as this one, "What is it you are so anxious to get home for?" he says. I pause thinking...."Is he kidding?" After all we've had many a conversation about everything to do with cf. So I say, "No offense to your hospital inparticular but hospitals are dirty and it isn't a place I want to stay any longer than I have to." I was blown away when he responded that "they have more to worry about getting from me than I should them." which I know he must have said out of emotion and defense because he knows I could have a much worse culture than I do. After all most hospitals are swarming with mrsa right? Damn! I wish I didn't ave mrsa but I do. Maybe this will clear it. That's one of my hopes for sure. But in the meantime I don't want to get some crazy panacea, mac, bc or what have you.
He definitely had his panties up his butt about something when we chatted Monday evening. I could go on with more examples of what he said. I think if he acts like that in my room I'll have to ask him to leave. It seriously raises my blood pressure and who needs that. I keep reminding myself if this doesn't work out I can always disconnect the PICC and walk out but then it would probably be difficult to get htem to authorize the filling of the home IV balls. I need the drugs so I need them. I know I definitely need to follow the rules of staying still for 6 hrs. post embolization and I will.
Well I just wanted to update everyone on the embolization and also see if anyone had any advice for me with my anxiety around germ issues. Also how to deal with nurses working on their own schedule. Do I need to accept that my drug might be infused 15-30 min later than the designated time. Is that okay? because my intuition goes off like an alarm that I'm constantly being f'ed over in the hospital. I try to hold back my thoughts then the pressure builds. It's a viscous circle that can't be good for getting over infection.
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I have been bumped until the 19th when I will be admitted for PICC and then embolization on the 20th. Maybe by then they'll be more in control to treat me with the respect I deserve.
I'm trying to think about people like Amy and Melissa who I respect who have stated in the past (not sure if this is how they feel now but that's a moot point) that a trip to the hospital allows them the rest from life that they need. I have too much going on in life right now and this is part of the reason I have failed on lung clearance at home. Don't get me wrong I'm 100% compliant with my Vest and I use the acapella 3x/day but since having my baby working out 3x per week is not enough. I know I need to workout every day but it's been very hard to fit it in. Also I probably need to be doing a mid day neb (that's a big commitment).
I finally gave up my cool gym membership and joined the rehab center in the bldg. that I work in. The toss up is I no longer go to the classes that motivated my workout to beyond my capabilities on a regular basis which was so good for my lungs. Now I can squeeze in a 15-20 min workout between conference calls.
I'm afraid I'm just trying to do too much. And as much as I try to control cf like everything else on my checklist ~ it just doesn't always like to be scheduled like that. I'm hoping by taking this agressive jump I can regain control and get on a routine that keeps me feeling good like I've balanced in the past.
I look forward to being on line with you all next week and working on my taxes in the hospital (strange as that might sound). Anyone else get scared of the thought of all the free time? I'm bringing books and other stuff but it's sort of daunting and again germy.
My doctor who knows I'm a bit of a control freak said to me Monday night. "Lauren this isn't going to be on your terms and by your rules." WTF is that supposed to mean? Shucks and I was thinking about making a "Get Well Plan" sort of like a labor & delivery "Birth Plan." J/K. And a few other statements that drive me bonkers when I replay them in my head. Such as this one, "What is it you are so anxious to get home for?" he says. I pause thinking...."Is he kidding?" After all we've had many a conversation about everything to do with cf. So I say, "No offense to your hospital inparticular but hospitals are dirty and it isn't a place I want to stay any longer than I have to." I was blown away when he responded that "they have more to worry about getting from me than I should them." which I know he must have said out of emotion and defense because he knows I could have a much worse culture than I do. After all most hospitals are swarming with mrsa right? Damn! I wish I didn't ave mrsa but I do. Maybe this will clear it. That's one of my hopes for sure. But in the meantime I don't want to get some crazy panacea, mac, bc or what have you.
He definitely had his panties up his butt about something when we chatted Monday evening. I could go on with more examples of what he said. I think if he acts like that in my room I'll have to ask him to leave. It seriously raises my blood pressure and who needs that. I keep reminding myself if this doesn't work out I can always disconnect the PICC and walk out but then it would probably be difficult to get htem to authorize the filling of the home IV balls. I need the drugs so I need them. I know I definitely need to follow the rules of staying still for 6 hrs. post embolization and I will.
Well I just wanted to update everyone on the embolization and also see if anyone had any advice for me with my anxiety around germ issues. Also how to deal with nurses working on their own schedule. Do I need to accept that my drug might be infused 15-30 min later than the designated time. Is that okay? because my intuition goes off like an alarm that I'm constantly being f'ed over in the hospital. I try to hold back my thoughts then the pressure builds. It's a viscous circle that can't be good for getting over infection.
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I have been bumped until the 19th when I will be admitted for PICC and then embolization on the 20th. Maybe by then they'll be more in control to treat me with the respect I deserve.