Sometimes... when you think it can't get worse..

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JennifersHope

New member
I am sitting here sobbing so hard that I can't see straight...I have to fight for everything and I mean everything.... as you know I just got out of the hospital yesterday.... I was in the hospital that I work at... not my CF hospital..which is a whole other story... and NOW a huge headache in and of itself..but I like going to where I work.. I don't get lonely.. lots more ppl come to see me.. I know the ppl well etc etc etc..and my primary is so awesome....

I had been emailing my CF nurse all along and letting her know what was going on right up till I was admitted... Well now that I am out.... I emailed my CF nurse.to fill her in.who is so wonderful but said I should have gone to them to begin with...and so I am going there on Thursday to follow up..

Fast forward.... Now I go to school this am.. I feel like poop but I go.. I am told that I can not be in school without a doctors note period... so I go down to the school nurse.. who was really nice.. I tell them my story.. ( she is new) she didn''t think it was going to be a problem at all.. said have my dr fax this saying I am clear for clinical... which he has done a million times..

I call just now to follow through with my dr to make sure that he did it and also to find out about my antibioitcs..... well he calls back and says.. I am not clear for school.. he asked me how I was doing.. He wants me to be honest with him to tell him the truth.. so I vaguley give him the truth..saying I am a little short of breath..and weak..but I can't handel any more steroids..... he said I am not clearing you for school.. come to my office on MOnday..

I went into hysterics... I have never done that with him before.I was a blubbering idiot..no wonder he thinks I manipulate him.....which makes me feel terrible.. and like a piece of poop but I told him.. How can he take away me being a nurse now that I am almost done... I told him I would go to a walk in clinic to get a note from some dr I don't know just to be clear so I can go.. I threatned to pull my own PICC line.. I told him I hate my life and that this is no way to live.. and wished I was dead.. Real mature....blah blah blah.. ..

I think I really upset him..He thinks I am going to die or something from going to school... I would rather die trying to go to school then to stay home.. Plus I am not that sick so the whole thing is stupid to begin with my normal PFTS are in the 90s hello????????????????????

I went on in hysterics saying that I am doing everything I can to get better.. except going to school today.. i swore myself to bedrest..which I can't do for the whole weekend... but I can for most of it....he told me my CF doctor has to clear me.. and that is it... well me being the genuis hasn't seen my CF dr since OCt.. and he is out of town...

Now My primary called and i think he hates me....and I really like him so much and feel like a complete jerk for being so unprofessional. but he cleared me to go to class for three hours on MOnday... and I am to report to his office first thing Monday after class... no clinical and no anything else...he isn't even giving me an appointment.. he just wants me there.. and he is pissed.... Now I feel like a loser.. . and really can't take anymore..

I can't believe I acted that way....but one lesson I learned for sure.... and I mean for sure.... I am never being honest again... I am always going to feel fine... no complaints....fevers aches or pains...and never spitting in a cup again.. forget ittttttt. period... .. I am not ever taking more then my base dose of steroids again.. the very base i need to stay alive..not the extra to help me ..... Forget it...I feel GREAT...

I swear.. the next time I go in a hospital other than to work will be driving my dead body to the morgue...... Oh and I am going to my CPR class tomorrow and I am going to do it....period.. it is do it or I am out of the program...Gee what would you do..??/ I am the class leader in my class, the class rep.. and I was just asked today to be a big part of the speaking part of the graduation..nothing is taking that away from me.. I have never had anything before.. never and I am not missing it...

I am sorry to whine... I am really at my limit and done...

as I am typing this.. my doctors tech called and said.. he faxed the papers over to my school and.. you have three hours on Monday..but" Miss let me tell you lack of planning on your part does not necessiate an emergency on ours.." I said what??? she said if you knew you needed these papers out you should not have waited till today to get them to us.. she went on to say how upset my doctor is because he didn't want to do this and next time I better be more considerate....I tried to tell her he was upset not because of paper work but because he doesn't think i should go back to school yet...she said.. your not even a nurse yet.. don't you think he knows best...???

I can't tell you how I feel right now.. I am taking a zanex and going to breath and pray I fall asleep and wake up to this being a bad dream..


Thanks for letting me whine

Jennifer
 
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jimhigginsCF

New member
Jennifer,

I think your working at a hospital and going to school to be a nurse is really kewl! I know there will be days when CF gets in the way of day to day living. Don't depsare, you can't know the good days without the bad ones to compare them to.

I know that the people here are one hellofa lot stronger then me. Everyone needs to rant off from time to time, and that's kewl too. I'm here if anyone needs a ear or a chat.

Thanks,
Jim no c/f
 
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julie

New member
Jen, I am so sorry to read this story. I hope the doctor can come to the realization that besides the CF you still have very valid and reachable dreams and aspirations. Him not clearing you to go to school just seems a bit wrong to me and I think you have EVERY right to be mad at him. Sometimes when were really ticked we don't handle things in the best and most mature way (been there, done than x 1000) but everyone has days like that and it seems to me that you doctor might understand your frustrations.

Mark had doctors who use to do things like that to him and he finally ended up telling them "Here's the thing, this is MY LIFE and my CF isn't jeporadizing anyone elses health. I am a grown man and if you keep putting limitations on my activities (school, work, need to stay in bed...) I WILL STOP SEEING YOU, or any other medical professional". From that point on, his doctors would *recommend* activities or a reduction of them but never imposed anything on them. They need to be made to understand that CF does not make a person stop living, regardless of how sick they might feel or actually are.

And that nurses comment, "your aren't a nurse yet dont you think he knows best...." You could be a highschool dropout and you would still know your limitations and health better than any nurse or doctor. They don't live with CF daily, they don't know what it is like, she has NO business making a comment like that. Maybe you need to be respectfully frank with her next time, "Knowing my own body and wanting to return to school has NOTHING to do with me working on my nursing degree and has EVERYTHING to do with me knowing my own body and handling my own CF for xxx of years".

I am so sorry for your frustrations but I hope venting helped you feel a bit better.

Take care of yourself,
 
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nickandlivsmom

New member
Jennifer-
I'm so sorry you had a bad day. Some people can be sooo rude. Don't let anyone stand in the way of your hopes and dreams. You worked so hard to get where you are. People just don't get it. Doctors included. Just try to take care of yourself the best you can.maybe you can Say NO to all other commitments and just go to school and rest on your free time. I know how hard it is. I never finished college even though i only have 1 year left. I give you a lot of credit!!!!!!!! Nursing school is 1,000 x harder!!!!!!! I hope you have a good night sleep and feel better tomorrow and have a much better day!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Emily65Roses

New member
The stuff Julie said is pretty much what I was going to say. You're not a little kid in effing kindergarten who needs permission to go pee pee. *bashes head against the desk* You are an adult and can make your own damn decisions. The doctor needs to understand that and you need to tell him so. That you will always thoroughly take his advice into consideration, and will be cooperative when you're able. But you will NOT risk the one thing that you still love doing in your life just to make him happy. You are what... 32 years old? I think you're a big enough girl now (even new to CF, you're still not an idiot -- and he's treating you like one) to make your own decisions. And if he can't understand that... then quite frankly, in my opinion, you need a new doctor. Whenever I came across any doctor that treated me like I was stupid and didn't know my own disease, couldn't think or decide for myself, I immediately informed any reception staff that I would outright refuse to see them again. And this was when I was 10-12 years old. They respected it regardless of my age. They respected it when I was 10!!! They should learn to respect you when you're three times the age I was then.

In all seriousness, if a doctor can't accept that you are NOT just CF, that you're also a person that has goals and hopes and all that junk... and that you're a big girl who can decide for yourself, then you need to find a new doctor who will understand all that. They do exist. I happen to be lucky with one of the best frickin doctors ever (a rarity, I must tell you!), but you can still find one that suffices. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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Starfall99

New member
I'm so sorry!! Want me to beat the nasty people up for you? <img src="i/expressions/devil.gif" border="0">

I emphatically agree with what everyone else has said -- this is your life and you have the right to live it! My CF doc and I have our disagreements (and I love my doc, he's great), but he's pretty much acceppted that he can tell me whatever he thinks is best and I will take it under advisement but in the end will make the decision that is best for ME not necessarily my health. I've always said the most important thing is not quantity of life, but QUALITY. If we were to do what was absolutely best for our health we could spend every waking hour doing nebulizers/chest PT/airway clearance/exercise/eating properly/getting enough sleep/etc. And we probably would hardly leave the house to avoid all the germs and dangers. But WHAT WOULD BE THE POINT of living a long healthy life if you did NOTHING with it besides making sure it was long and healthy?! I'd rather lose a little health and actually ENJOY living! And I think this is a decision we all make, and the doctors need to be able to accept it.

I know about the freak outs too. My best was when I was inpatient, had just had a G-tube put in a day or 2 earlier and was still VERY sore, and was also probably PMSing. Some new resident had asked if I was afraid to cough, and of course I said yes because when you've just had a hole punched in your stomach your abdominal muscles get REALLY ANGRY when you cough. He then offered to get me more pain meds, and I was like "OK sure;" if I'm in pain, and he's offering pain meds, why not? Next thing I know my doc comes in and basically tells me to suck it up and stop being a baby, I don't need more pain meds, and I need to force myself to cough and clear my lungs even though it hurts. Oh man did I lose it! Who was he to tell me this -- let him poke a hole in his abdomen and then deal with bronchitis and see how HE handles it -- and I never said I WASN'T coughing, just that I was scared of it -- and I never even asked for the stinking pain meds in the first place! So I yelled and hollered and let him have it, and ordered him out of my room. And that night I'd had enough of being poked and prodded and bothered for 2 weeks, and was sick of all of them, so I stuck a note on the door stating clearly that I was refusing all treatment until after 8am the following morning, signed it, and shut the door. Nobody came in until I think after 10am when I finally opened my door and took off the note, it was beautiful, I think I scared them! Hehe! <img src="i/expressions/devil.gif" border="0">

So, while I don't recommend the freak outs, sometimes they are inevitable, and make sure you share the blame for them around where it's due. And I DO recommend sticking up for yourself whenever you need to, because it's your life!

Stubborn CF patients UNITE! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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anonymous

New member
Holy crap what a nightmare.
Is is SSSOOOOOO horrible when the dr./nurses don't listen to me. I am a bitch and I mean bitch. I try not to be mean to them but I am direct and assertive and I stand my ground.

Just b/c a nurse realizes you aren't a nurse YET doesn't mean that you don't know your body. You know it 100% more than she or anyone else does.

I'm not always honest either but I can totally hear where you are coming from.
I hope you are going to be an amazing nurse since you know how NOT to act. You could teach that nasty woman a thing or too!
Stand your ground sweetie!!!
~KELLI
28 w/ CF
 
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JennifersHope

New member
Thanks guys for your support... I just got home.. I had to go to a CPR class today..Mandatory ........ or no clinicals for me next week... My boss thought she could get me in and out but it didn't work..but I DID IT... I got my renewal..... and am good for two more years...and it FEELS SO GOOD>>>>>> I wish I could have waited but I had no time left......I made six copies of the card and I hung it up on my refridge..at home and also on my bosses refridge at work.... She was so proud of me for doing what I had to.....even though it was hard.....


I got a funny voice mail from the school nurse today... and when I called her back she said..."Gee we got an odd fax from your doctor that clears you for school till MOnday am at noon.. ONLY...... So of course she went on to say....I need another note..... for Tuesday...... I can't get to my CF doctor till Thursday but I am seeing my primary on MOnday.. He is seeing me on his lunch break and he is pissed.......Well at least I am still in school till MOnday at noon.... That is something.... The funny thing is, having Addison's disease, the worst and I mean worst thing in the world fo my physical body is stress... and seems like that is all I get...


I was talking to a wise friend today..someone going through more crap than you can imagine and I was saying how sorry i was for acting the way I did with my doctor... and what they said to me has helped me so much.... they said

Think of me as a bear.... and my schooling as my cub... I have been nurturing and growing this bear cub for five years...and dreamed about it as a child....I Have protected it..fought for it..and gave it my blood sweat and tears for years... Literally putting up to 50 hours a week of study into...then with just 15 weeks left to be done, they said how else would a Mama bear act when someone was about to try to shoot and kill their cub.....??? And you know what??? I feel understood.....that is how I feel....I feel like I would die to protect this..to finish this...to complete one thing in my life.. to not be a failure at one thing........ to not depend on any human being....so they said they understood and it made perfect sense for me to react so strongly....No need to commit myself to the shrienk hospital... I am not a bad person or a bad human or immature I am human.....and THANK you guys for pointing that out..as usual


And on that same note and with all the passion I have for school, I have that same passion for the ppl who love me and my doctors.... so to disappoint them..to not follow what their advice is..is so hard..... somewhere somehow I have vowed to be able to finish school and be able to take care of myself...and at the same time, my heart is torn...because that ppl pleaser in me wants to do what I am thought I should

Thanks for letting me work this out here....If you pray, please pray things go well with my job... I should be getting hired soon as an RN and also that things get worked out with school... I have to be able to stay.....


Thanks so much
 
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Faust

New member
For me, i've learned to expect things to get worse, because more times than not, they will get worse. That way when things do indeed take a turn for the worst, I don't freak out, because I was expecting it. That applies to everything for me, from your favorite sports team, to your health, to relationships, jobs, your car, debt...Just expect it to get worse, and continue to enjoy the happy times. When/if it does get worse, you saw it coming the whole time and you won't have such a bad reaction to the adversity.
 
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JennifersHope

New member
Sean if I had that attitude I would not be able to get out of bed.. I would be too depressed.. The sad thing is that you are probably right to some degree.especially if I think about it and think that the reality is I am not going to get better only worse.....or maybe I will get better... YOU JUST NEVER KNOW....I think I am at the point in my life where I am prepared for the worst but pray for the best... I have faith in God.. which I don't think I would be alive with out..and somehow..now matter how many freaken times I get kicked in the face by life... I just know in the end... I will be in a place where suffering does not exsist.and I will be with the Creator who made me..... and that comforts me ...
 
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JazzysMom

New member
I have been thru times of "could things get any worse" and you know what they did....and some how I muddled thru it. I will admit that some of that time I was existing & not really living, but I was alive to get thru it & start living again. I know you are dealing with a lot & I wont pretend to completely understand. I will say that I actually envy you & the drive/determination that you have. Thru it all you keep plugging away striving for your goals & somehow with a happy attitude in general even if it is thru the prednisone attitude. You are a fighter Jenn & a great inspiration!
 
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anonymous

New member
Jennifer stick with it. The idea with the bear is perfect and I'm glad that you have a friend that is so dear to you and also so good and understanding what you are communicating. You are lucky to have that person.
Good luck to you and fight for what you believe in, explain to your docs that you are so close and you ARE going to finish. Not a year from now, but NOW. You've worked too hard to let this slip thru your fingers at the last minute.
You're going to be a GREAT nurse!!!
~KELLI
 
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Faust

New member
Keep keepin on Jennifer. My feelings are my feelings, but that doesnt take away anything from anyone. I have me beliefs, and I understand how people work under pressure...Keep on keepin on. If you can and will be prosperous under crappy circumstances, have a blast and live every heartbeat.
 
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JennifersHope

New member
JUST WANTED TO GIVE AN UPDATE.......Since I got so much support...

As it would happen I had a snow day today and didn't have classes anyway today.. I got up did all my treatments for an extra long time.. Got ready got in the car... I prayed my butt off and then I started to go over in my head what I was going to say to the doctor.. how I was going to apologize for being the worst patient in the world.. I was going to give him all the rationales of how I Have to stay in school... why I don't listen to him.. only so that my dad can retire... I was going to tell him that my parents spend $12,000 a year... on my medical expenses alone... I was really prepared.. but still felt stuck..because I had to stay in school but I was really sorry for upsetting my dr...

Anyway... I get to the waiting room.. and now I have it in my head for sure everyone is pissed at me.. so of course.. in my head I think it.. so I am justifiying why no one is talking to me like they always do..but the time the nurse calls me in..... I am fighting back tears....

The nurse is a sub.. who I have never seen before.. anyway

IN walks my doctor...

I start saying how very sorry I am for my immature behavior.. that I know I suck as a patient.. I apolgize telling him I was sick about it all weekend.. and he looks at me and says, " what are you talking about?"


I said come on.. he said lets focus on how you are now..blah blah blah...He told me that it was water under the bridge.. that he admires me deeply..and that I do suck as a patient but that it is okay for now....H told me he understands how hard it is to be chronically sick... I tried to tell him about the money and how I want my dad to be able to retire..... he laughed at me and said " I am sure your dad doesn't mind paying all that money for you.. He told me that the day I don't argue with him.. he will worry...He told me me he loves being my doctor... anyway my point was I fretted all weekend and he didn't give it a second thought..... UGGGGGGGGGGGGGGGGG MEEEEEEEEEEEE

He said I am doing better.. He wanted me to stay longer in the hosptial.. but I look okay now.. no wheezes.. air moving better..not great but better... anyway I AM CLEAR FOR SCHOOLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL>> THANK YOU LORD>>>>

Then afterwards when I came out of the room, all the partners in his practice 7 of them total came out, I think they were all in a meeting and gave me hugs.. and the final count down with school.. They just surrounded me with love......encourgament and all kinds of stuff.. I chatted and caught up with a few of them...and went to work to drop off paper work.... and again I was greeted with so much love....

Right now between going to church yesterday where I was surrounded in love more than I could ever express, the doctors office and work today..having this website and others, I feel like I am the most blessed person in the world to have so many wonderful ppl who love and care for me... I am really humbled..and grateful....I didn't do anything to deserve it... but I am so grateful for it.

Thank you guys for always being there to listen to me and give support and advice,

Love

Jennifer

PROUD TO BE READMITTED BACK TO SCHOOL 15 WEEKS TO GO.....
 
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JennifersHope

New member
JUST WANTED TO GIVE AN UPDATE.......Since I got so much support...

As it would happen I had a snow day today and didn't have classes anyway today.. I got up did all my treatments for an extra long time.. Got ready got in the car... I prayed my butt off and then I started to go over in my head what I was going to say to the doctor.. how I was going to apologize for being the worst patient in the world.. I was going to give him all the rationales of how I Have to stay in school... why I don't listen to him.. only so that my dad can retire... I was going to tell him that my parents spend $12,000 a year... on my medical expenses alone... I was really prepared.. but still felt stuck..because I had to stay in school but I was really sorry for upsetting my dr...

Anyway... I get to the waiting room.. and now I have it in my head for sure everyone is pissed at me.. so of course.. in my head I think it.. so I am justifiying why no one is talking to me like they always do..but the time the nurse calls me in..... I am fighting back tears....

The nurse is a sub.. who I have never seen before.. anyway

IN walks my doctor...

I start saying how very sorry I am for my immature behavior.. that I know I suck as a patient.. I apolgize telling him I was sick about it all weekend.. and he looks at me and says, " what are you talking about?"


I said come on.. he said lets focus on how you are now..blah blah blah...He told me that it was water under the bridge.. that he admires me deeply..and that I do suck as a patient but that it is okay for now....H told me he understands how hard it is to be chronically sick... I tried to tell him about the money and how I want my dad to be able to retire..... he laughed at me and said " I am sure your dad doesn't mind paying all that money for you.. He told me that the day I don't argue with him.. he will worry...He told me me he loves being my doctor... anyway my point was I fretted all weekend and he didn't give it a second thought..... UGGGGGGGGGGGGGGGGG MEEEEEEEEEEEE

He said I am doing better.. He wanted me to stay longer in the hosptial.. but I look okay now.. no wheezes.. air moving better..not great but better... anyway I AM CLEAR FOR SCHOOLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL>> THANK YOU LORD>>>>

Then afterwards when I came out of the room, all the partners in his practice 7 of them total came out, I think they were all in a meeting and gave me hugs.. and the final count down with school.. They just surrounded me with love......encourgament and all kinds of stuff.. I chatted and caught up with a few of them...and went to work to drop off paper work.... and again I was greeted with so much love....

Right now between going to church yesterday where I was surrounded in love more than I could ever express, the doctors office and work today..having this website and others, I feel like I am the most blessed person in the world to have so many wonderful ppl who love and care for me... I am really humbled..and grateful....I didn't do anything to deserve it... but I am so grateful for it.

Thank you guys for always being there to listen to me and give support and advice,

Love

Jennifer

PROUD TO BE READMITTED BACK TO SCHOOL 15 WEEKS TO GO.....
 
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anonymous

New member
Congratulations Jennifer! Feel better, and the best of Luck to you for the rest of the school year!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Congratulations Jennifer! Feel better, and the best of Luck to you for the rest of the school year!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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