I Just get so frustrated!

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NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 8/14/2008 10:45 PM (GMT -7)   
Ugh!
Sorry, I'm kind of just venting here, but sometimes I just get so frustrated!
 
So I'm a huge outdoorsy person, and I totally love hiking, kayaking, backpacking, all that stuff.
And now, because I'm sick, I'm getting left behind for the 2ND weekend in a row while the rest of my family goes off without me. It's so unfair! But my parents and my doctors have started me on Tobi nebulizer because my health has been going downhill the last few months, but still, I wonder if it would really kill to at least give me the weekends :(
 
It doesn't help that I don't have anyone to talk to. Nobody around me understands what it feels like to have CF, or any chronic illness for that matter. Nobody gets how much it sucks when I go off by myself on our group trips to do my treatments so people don't think I'm a pity-seeking sick person.
 
I just hate being left behind when there's nothing I can do about it. To be all alone and not be able to do the things that I want just because I was born like this is so upsetting, sometimes that I can't even stand it!
 
I just wish that I actually knew someone with CF. My doctors hide us from each other, and sometimes I just want to jump out of my room and yell, "Hi! I'm Emily!" to every CF kid in the  hospital. I would wear a gown and cap and gloves and everything! It's an easy price to pay for a friend who understands.
 
Wow, I'm almost 19 years old and I'm whining like a baby. Oh well, everyone needs some kind of outlet.
 
Ta ta for now!
 
Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/15/2008 3:50 AM (GMT -7)   
Em, your whining less than me right now-so that's still good:)

With regards too the Tobi-are you on one month on, one month off? If not ask your docs why not, as the new month on month off thig is much better for you apparently. Also it means you cn do some planning too ensure that everything fun is happening in your month off Tobi.

With me at the minute-they want me too have these antibiotics, that mean I can't have paracetamol for the 2 weeks I'm taking them, and I can hardley move through pain without paracetamol. I told them I'm just not going to take them, as another thing is, it's 4 doses in a day. I struggle with remembering 2 doses.
Basically they've said that I should be able too manage 4 doses in a day, and that they don't react with paracetamol. I can't understand why it would say on the leaflet "do not take with paracetamol" if their wasn't really a problem. Especially as the leaflet was only revised in July 2007. And, it also says you must not miss a dose, and must tell your doctor if you do miss a dose-jeez, I'd be having to ring eery day. I've never seen that warning on meds before-I've only ever seen it as, move onto your next dose and don't make up for the missed dose. There's gotta be something major problem with these ones if it says that you have too ring your doc.

It's like they promote you to make your own decisions, but then purposely tell you a load of rubbish, and make you feel guilty, until you conform too what they want. Just remember though-they can only advise not order, and should be advising you of all options available. They have too accomadate your needs. Now adays adult care is all about managing your condition, and you can't manage if you feel you can't live your life because what they give you gets in the way.


Friends with CF are in my expericance invaluable. At the kids hospital-we weren't stopped from mixing. They did the sensible things like put us all in seperate bays, and never introduced us. But there wasn't the blanket ban like there is now a days. I remember 2 occasions, where me and other CF patients, along with physios, all went too play football on the park. Our CF teams now would throw a fit, yet back then they just let us. We were going to be mixing anyway-may aswell get some excercise done while were at it.

The silliest thing now, is that my unit even advise that I don't meet with my brother, who also has CF. It is beyond ridiculous. They didn't seem impressed, when I went with him, while he was in hospital on IV's, to a nearby shopping center. They were fine when they thought he was going alone-but going with me suddenly it wasn't good idea.

All CF patients now, are banned from being in the canteen at the same time, yet we are also hidden, and not supposed too know the other patients. I think they must want us all too have "cf patient" tattooed across our heads, so we know who too avoid lol.

Another thing hun-be loud and proud-if you feel uncomfortable with something let them know, it's their job too find an alternative. It should be your choice how you use what they give you. They really only can and should advise you on your options, the decisions should be yours too make. What ever you think is in your best interests.

Love and uncontaminated hugs wink

Gem xxxx


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 8/15/2008 11:43 AM (GMT -7)   
Thanks Gem for all the support :D
I still live at home though, so It's hard when the parents AND the docs gang up on you.... "doctor knows what's best" and all that stuff...
And I'm on tobi 2months on, then 2 months off
Your brother has CF?? You're kind of lucky there, in the way that you're not alone. I have 3 siblings and I'm the only one with CF, my big bro is just a carrier, and there is no CF in my family history (a far as anyone else in my family knows at least)
 
Oh well
 
Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 


rdsknflag05
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/17/2008 4:37 PM (GMT -7)   
Hi! I'm brand new to this forum. I literally signed up today after reading your post because I can relate to you.

I'm so sorry that you feel so frustrated. I'm a 21 year old who also enjoys the outdoors and am now on TOBI as well. I currently also have a picc line in and am receiving 5 hours of IV antibiotics at home a day. I totally agree with you about being frustrated.

I have never realized that doctors don't want other CF patients to meet each other. I never thought about it, but now that I think back I can't remember a time where they have ever introduced me to other CF patients. I wonder why this is. Are you currently attending school or anything? I hope we can communicate somewhat because, like you, I know no one with CF. The first person I met was because he was featured in my local newspaper for going through a double lung and heart transplant. Unfortunately he passed away, which only made it harder for me to feel positive about having CF. I also have 3 siblings, and I am the only one with CF and there has been no previous history of it in my family as well. It's just so irritating. It's also frustrating to hear that we just have to accept this and be ok with it, because some days it's hard to be ok with not being normal. Anyways, I'm so sorry that you're currently having trouble and I hope things start looking up for you. You'll be in my prayers.

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 8/17/2008 6:02 PM (GMT -7)   
Hey...um...flag05? haha sorry, is there a name I could call you??
 
But yeah, it's way obvious when they separate us from each other. If more than one person shows up to check in at the same time, we're supposed to stand at least 6 feet back, and then once we check in they put us at opposite ends of the waiting room (and its a big room). And then when we're in our rooms, our doors have to be shut at ALL times. It's really annoying...
 
You said you wondered why this was: Well rumor has it that doctors have discovered that with CFers there is a huge risk of cross-contamination of all kinds of bacterias and pseudomonas (spell?) from one patient to another, and so now they just don't want to risk it. At my hospital, just for check-ups, the nurses and doctors have to change into a new gown/ gloves and everything when goging from one patient to another. I'm just waiting for the day when a doctor sees the movie "Bubble Boy" and gets unpleasant ideas... 
 
I live in Washington, and right now I'm sadly only a senior in high school (technically...I started a year late cuz I was sick) but I'm taking college classes through a local community college. I have 2 classes a day on campus, an one online class. So I'm an in-betweenie.
 
What about you? What kind of stuff are you filling your time with right now?
 
And here's my stuff if you wanted to chat another way.  
 
 
 
 
Great meeting you!
 

Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/18/2008 7:21 AM (GMT -7)   
Oh Em, being meaning too post this.
The other day in clinic, they handed me this questionnaire thingy about how good the unit is on a scale of 1-10 etc. With this, they also gave instructions not too write on the envelopes, as they wanted too reuse them.
Me, opening my big mouth like usual, jokingly pointed out that reusing envelops was an infection risk. Can you believe-they took it seriously!!! They've decided they aren't using envelopes with the questionnaires anymore, you have too fold them up instead and put them in a box. It's beyond crazy and way overprotective. Soon we won't be allowed too leave our houses, incase we bump shoulder's with someone else with CF, or incase we grab hold of something, held by a fellow cystic before us.

Cross-infection policies are taken way too far in my eyes.

Oh, and me and my brother have never being able too really talk about CF, he hates talking about it, he hates even having too think about it. We're both really different, though we still do enjoy hanging out, and finding places that do the most highest calorie food ever. It's strange though, because we'll just share a pot of creon when eating anywhere. We get a lot more dodgy looks, than we would just taking creon on our own. There's advantages and disavantages I guess. It's much easier with one of my best friends who also has CF, and has the same bugs as me, and can sympathise with me a bit I guess, but we don't get too see each other often. He's in hospital about the same amount as me though, where as my brother, hardley ever has a problem.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 8/18/2008 2:16 PM (GMT -7)   
Are you serious Gem??
 Haha Well I hope you're happy to know that because of you no one else gets the privilege of using possibly-contaminated envelopes ;)
They are pretty bad at my hospital too. They always close the door. I hate that. Makes me feel way isolated and lonely. So I open them, they close them, it's a never-ending battle of wills. I'll also take walks around the clinic to go to the 'bathroom' (aka just seeing what's going on). I wish I could bump shoulders with another CF kid. I was actually politely turned down at a job as a substitute day-care teacher because a kid in ANOTHER class had CF and the other kids parents weren't comfortable with the risk of cross infection.
Cross infection theories are rather inconvenient.
 
Well, even though you and your bro can't talk about it, at least there is that level of silent understanding. I mean if I have a coughing fit or something in a public place, I even feel a bit weird around my sisters because they are perfectly healthy.
 
 
 
Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/18/2008 11:58 PM (GMT -7)   
Yeah, I'm good at opening my mouth like that. Last year, me and 2 other CF patients went too the pub, just too get out of the hospital really as we were bored stiff. We told 5 members of staff we were going, where we were heading, and that we would be back in time for afternoon IV's. Doing this had never been a problem before. Well off we toddled, 1 hour later I get a phone call asking where I was, and if I knew where the other 2 CF patients were (they were missing us that much, awwww) We said the pub, though quickly explained none of us were drinking and there was a fair distance between us all. Between 4 of us we'd stolen 3 tables lol. The 4th person was the ward clark from kids hospital, me and him still keep n touch, though none of the others have done. Anyway, my CF nurse wasn't impressed, and told us too get straight back there. It took ages of explaining why we went (we were bored, canteen have nothing edible on, you said we could go) But of course there was no written proof.

So, that was when they brought in the red book. Now we have to write down exactly when were going, when were expected back etc. It's all good, except we have too write down also whenever we leave for the canteen, or just for a walk round the hospital.All the other patients seem annoyed at me, can't think why. Now we have a folder too, which says all about cross infection rules. This was brought out the same week, and now they basically say we have to stick too the rules, as there's no excuse not too know them now.

Oh, and closed doors on clinic, yeah they do that too us too. Even though we have different days for different clinics. They haven't quite twigged yet, that I only get upset and can't control myself on clinic days where they insist the door is shut. The rooms are stuffy with no windows, and with the door shut I just end up getting clostrophobic.

Gonna have too shoot off now. Got a numeracy course today, and I'm one of the mentors. Wow, I so don't feel like doing anything today!
 
Take care!


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

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