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JennifersHope
11-09-2005, 03:35 PM
Hi,

I am just venting ..... because I am having a bad couple of days and I want to scream, but I don't want to share it with ppl who are live and in person in my life because I will just add to thier worry and that will make me feel worse. I am sure this is a bunch of nothing and that I will feel better about it all soon.... So here is my vent....

First, my body hurts so bad that I didn't sleep more then 45 minutes last night. Every time I would fall asleep, I would roll over onto a joint and wake up in so much pain.. I am maxed out on tylenol and motrin. Narcotics make me throw up. I got a massage yesterday to see if it would help, and today I woke up feeling worse today. FOrget about putting a vest on... I barely was able to walk across campus today it hurt so bad I had tears streaming from my face.. I bought some exercise ball that the massage lady told me about to help stretch my muscles.. I tried that last night.. and when I leaned back.. I got so dizzy I threw up instantly and spent a good hour after that feeling like I was on a merry go round...I can't even bare the thought that the rest of my life is going to be filled with pain like this.... or worse...

Next rant...

I woke up with a cold this morning and sinus pressure like I have never had before in my life....Great because I think I have been off antibiotics about a week...

moving along

I hate school this semester....I have never hated school ever.. but since Sept. I have been under so much stress with my step father dying and taking care of my mother "long distance'... I listen to her cry almost daily and then I had good old OCtober where I was in the hospital.. and then on home IVs.. I have never felt more stressed .. though I am doing good in school I am so burnt out .. many of my friends are failing nursing school now.. and being that I am the class rep. I have to be there for all of it. I don't dare tell anyone I hate school and that I am overwhelmed because my dad is riding one me finishing, and even though I know I am going to finsih just saying how I feel is going to freak him out.. and If i tell anyone friends/drs/ etc they will probably agree with me and tell me to withdraw...

I won't mention my other personal/emotional roller coaster I am going through.. but leave it at my emotions are a mess and I am angry.. which I never even get anrgy...

All I want to do is crawl into my bed (except it will hurt like heck) and pull the covers up and make everything stop spinning out of control. I probably sound like a moron complaining about this kind of stuff .. but I am so overwhelmed and fed up......I just had to vent... and know that someone understands where I am at....


THanks for letting me vent.....

Jennifer

JazzysMom
11-09-2005, 03:54 PM
I am so sorry that you are having such a hard time right now, Jen. I wish I could give you a hug (without hurting you) and make it all better. I cant say things will be fine or I completely understand the pain or stress you are dealing with. I can say I know the overwhelmed feeling & the feeling of "dispair". This board if for support & I am glad that you came to here to vent. I hope it helped a bit & maybe some replies will help a bit more. Hugs/Kisses to you for now!!!!!

Emily65Roses
11-09-2005, 04:04 PM
I don't have a single thing to say to you that will help. So I'm just going to spew the typical "if you ever want to talk, you can contact me" business. I know we all hear that sometimes, but I really mean it. Haha. AIM: Emily65Roses, Email is the same @yahoo and you can always PM me via this site too. I'm sorry things are sucking major balls right now. <img src="i/expressions/heart.gif" border="0">

Lilith
11-09-2005, 04:24 PM
Hey, Jennifer

I understand part of what you're going through. October sucked for me, too. Back on home IV's, for about two and a half weeks, and now I have cold and I've only been off of them for less than a week. Could be allergies, too, but they're so bad I can't tell the difference. I'm sorry you're so stressed out with school and all, and I hope that your pain dulls quickly. Sounds stupid, but maybe it's just the weather...?

I wish I could say something that would help you out, but all I can say for now is that things will get better. Life has a way of working itself out sometimes. Just hang in there!

rose4cale
11-09-2005, 04:25 PM
Jen I wish I had the magic words for you too. Keeping up with your posts and everything you've gone/are going through in the last couple of months, I'm not surprised you're overwhelmed! But in order for you to keep the best you, you have to take care of yourself first! Your family will understand if you have to say STOP for a second to re-gain your strength and stability. They will be disappointed if you let yourself get ill for 'their' sake. The feeling of losing all control over yourself is no way to continue and will only make things worse. You have been such an inspiration to many of us. Please, please take care of you first! I am sure your family, friends and colleagues would agree!!

julie
11-09-2005, 04:56 PM
Jen, I am so sorry to hear that you are feeling so stressed.

I was thinking about some things that might be done that are able to help, thought I'd throw them out there. About school... have you ever utilized their "disability services" office?? Know that for many, utilizing such programs are a difficult swallow-I practically had to beat Mark with a club to get him to see the advantages. But he gets free tutoring services paid for by the state/federal government combo because he is elgible for the PELL grant and this particular tutoring has NOTHING to do with the disability office. ANY student recieving a Pell grant is eligible. Additionally, the disability services office may be able to provide additional studies suport if you are beginning to feel overwhelmed with studies and responsibility-it's ok to say that you are a little overwhelmed. I can understand you not wanting to share that with your father under the "pushey" circumstances, but there are outlets at school that might be able to assist.

It's worth looking into, if you need some help, let me know and you know I'd be glad to assist!

cfgirl2008
11-09-2005, 06:20 PM
Jenn, Im so sorry that your having a bad time right now. Hopefully it will get better soon. Take CARE!


Tiffany 15 w/cf

65rosessamurai
11-09-2005, 08:28 PM
Hi Jennifer,

I can understand your feeling of being overwhelmed, I've been there, too. The soreness from sleep, I've had that, and it lasted me about six months at least. It was due to a shoulder injury, in which I had only three other positions to sleep, and sometimes were not very comfortable, either. I'm sure yours is in no comparison to mine, so I really hope you get better, quick.
My stress is related to work; can't stand the job, can't stand the boss, can't just get up and quit to find another job so fast. I feel I've been rejected from the applications and interviews I sent in already, and feel I may not get a job soon enough.
Julie sounds like she's got a good suggestion, and I agree with rose4cale, take care of your own body, first. After my injury, that's what I learned to do, too. Before that it was to please co-workers and try to move up in the company, and keep the "wicked witch of the south-east" I call the "EX" now, off my back.
I've still got "new" problems...my new wife's mother is WORSE than my "EX", but I don't have to put up with all of her "shinanigans", I ain't married to this one!
I really hope that the venting and support from people close to you will help your life "spin" back to an acceptable speed for you.
Personally, I think it's great to vent here, so much support from it, don't you think?
Take care,
Fred

(P.S. at least with the mother-in-law comes some good new jokes! That completes MY day!)

Purplelungz
11-09-2005, 08:36 PM
Jen you know my messenger. You can im me anytime hun.
I read an article the other day a friend of mine showed me about acupunture. Sounds very promising for pain. If you have tried everything maybe try acupunture as a last resort. It might work for you...i really dont know though just trying to throw some ideas out there. Is your pain related to the steriods, or are you getting arthritus real bad? If its arthritus maybe the doctor can prescribe an arthritic med? I know they have some.

Im praying for you hun.
Amanda

chloe
11-09-2005, 09:50 PM
Hello JennifersHope...what a great name!!

I hope that you are feeling a bit better...I know that sometimes when we vent...it just helps!! That's one of the things that I feel is so great about this site. It's a place where we can be real...and share our hearts with people who are going through the same things.

Weather you have cf...or...are a family member or friend who loves someone with cf. We all seem to become one big family!! I know that has been a support and an encouragement to me!!

I'm glad that you feel comfortable sharing your feelings with us...but...I want to give you a little encouragement!! It seems that you have an awesome support system...friends and family that love you and support you!! That is something to be thankful for!!

You are blessed to have that! Maybe it wouldn't be a good idea to share these things with your father...but...from what I've heard about your friends...it seems that they would want to know...and would be there for you every step of the way.

As far as how you are feeling...I am so very sorry that you are going through this!!

It might be a good idea to talk to your cf doctor and social worker though. From what you have shared in the past...they sound like wonderful people...who would give you good advice. Advice that would be in your best interest...and not with an agenda!

Venting is great...but...I encourage you to talk to the people who know you on a personal level too...and trust that they will have your best interest in mind...as they share their support and concerns with you.

Your doctors sound great...and in the past you have shared with us how much you trust them...and...how much they know what they are doing...and that they care for you so much!! How awesome...and...how blessed you are to have that!

Also...I encourage you to keep up with your treatmets...as hard as that is at times. Taking care of yourself...is something that you do have control of...and you will benefit from it in the long run.

I am praying for you JennifersHope...and look forward to hearing a good report from you soon!!

Peace...Hope...and Love...Chloe

EB24
11-09-2005, 10:01 PM
Here is a big hug. Hope it helps.

farbeyond1
11-09-2005, 10:48 PM
Hi Jen, I don't have much time to type right now... but if you would like to chat through emails sometime feel free to send a message my way. I'm a 27 year old male going through some really rough times right now too. My lung function dropped down to 20% over the past few months, now I am in need of a double lung transplant... which I am hoping to get this winter. I'm scarred to do much this winter, getting a cold for me at this point may lead to death. Hearing this news from my doctors was quite frustrating. I am doing well with it at this time, but we all have our days. On my spare time I do enjoy trying to help out others that are in need of someone to chat with. The CF community doesn't have much to help us cope with living with this illness, hopefully some day that will change.

My name is Mike, email: [email protected]

Hope you are going better,
Mike

JennifersHope
11-09-2005, 11:09 PM
Hi,

I can't thank you enough for all your input and support.willingness to chat and hugs..... It does help me so much to be able to vent. being gut level honest is not something I am good at in person, I tend to worry about what I am going to say and how that is going to affect the other person which is totally my own fault.no one did that to me but my self ..but I still feel bad..... but on here I just let my emotions rip for some reason...

I instantly got tears in my eyes when I read all the responses of love and understanding... I just want to be heard is all, I know their isn't any answers and I so appreciate you guys not trying to fix me...


Some of your posts made me crack up laughing (EMily) and some of them made me cry feeling so understood and cared about...your well wishes made me feel so much better...at least emotionally anyway...everyone of them meant a lot to me.....

Julie... thanks again for your help.. I don't really need a tutor because I am doing really well in the class esp compared to how others are doing.. I didn't know about being able to get Pell grants because of disability.. I am going to look into that.. I already get some FIn aid but this year I didn't get as much as I usually get. I just am burnt out with school is all...

I do have wonderful support and I am blessed for that and would be lost without it.., including my dad, family/friends and drs.. I am not real comfortable to talk to my CF dr or social worker because my stress is not CF related nor is my bone pain (more steroids induced from the addison's) as far as I can tell.. and my CF doctor said I am doing so well that I would feel like an idiot complaining to him..He sees ppl who are much sicker then me and I have no right to complain... Esp cause he just told me.. my lungs are in great shape.. I should be happy and feeling good...but instead I feel like I have broken glass in my joints that cuts and burns me everytime I move and I have yet another sinus infection.. As far as sharing with my family .. I am not going to put them through any more emotional drama.. esp since nothing major is wrong......

I am tired of going to the doctors, I am tired of everything with me health....I am doing ALL my treatments minus my vest today.. it just hurts to much.... and since my lungs are fine, I am sure it isn't going to hurt me to miss one day. I feel like a jerk for complaining about my health because I don't have it half as bad as many of you, and yet you guys are all troopers.....and I sit and whine...

My primary doctor gave me flexirel today to take for the muscle pain.. and so far it has just made me real tired....but still when I go to lay down.. OUCH.

Thanks again for so much support I am really blown away..... Like I said I am sure I will feel better soon....


Jennifer

LoveShines4Austin
11-09-2005, 11:14 PM
Jennifer, I know you may not want to hear this, but I cried when I read your post. I'm sorry but I just wanted to climb right through the monitor and hold you close to my heart.

I was in denial for so long. Now that my son is sick, I can no longer hide my fears. I will admit that the reason I stayed away from support groups and forums, was because I just could not stand to see anyone in pain or hear about the progression of this disease. I saw my son's future and I couldn't stand it. I saw MY future without him, and it broke me. I also could not see my son at the support groups, witnessing the pain that was most likely going to consume him someday.

When I spoke to a wonderful lady named Jennine at the pharmacy and, over the phone, she told me about his Tobi and that they were going to deliver it to the house, she also told me that she has a daughter that is 20 months old with CF. She told me that she understood what I was going through. She sent me an email with some information about a local support group. I still haven't made that phone call. I'm not ready. This forum is my "baby step" towards acceptance.

I want to thank you for venting your frustrations. I am so sorry that you are suffering. Reading what you have written has prepared me for whatever the support group may bring into my life. I wish the best for you ~*~*softest of hugs~*~* Please try to stay as strong as you can be.

Purplelungz
11-10-2005, 05:16 PM
Jen Jen Jen

You have every right to complain. I doubt anyone care what the numbers say on how bad someones health is. We all have something thats worse than the others. We all have troubles, we all need to vent. Doesnt matter how small you think it is because you think someone has it worse....we are here for you regardless. We know your in pain, we know what its like to be in the hospital, to be frustrated at needing ivs. We are here to listen to you. We love you.

I was reading up on Green Tea. Its known to help ease pain from headaches and arthritus. Worth a try if you like green tea. Seriously I want you to look into acupunture to. You know me and how cautious I am, especially about alternative medicines. But i think its really promising and if done correctly it could help lesson your pain alot. If you like I will research acupunture for you, and you can decide for youself if you should try it (which you do that anyway). But if it works it would be better than more medications and doctor appts right?

Amanda

Emily65Roses
11-10-2005, 06:16 PM
<blockquote>Quote
<hr><i>Originally posted by: <b>JennifersHope</b></i>

I feel like a jerk for complaining about my health because I don't have it half as bad as many of you, and yet you guys are all troopers.....and I sit and whine...<hr></blockquote>

Blah de blah, Miss Jennifer! We ALL complain sometimes (and I might add - we ALL have the right!). My lungs may be crappier than yours (and mine are still pretty good, I might add, so I also often feel like I have no place to complain), but my joints aren't nearly that bad. I have some pain in my hips and knees, but only if I sit the wrong way, or walk for hours on end. I can sleep without waking up in pain. --- In short, it's all relative.

As "small" as a complaint may be, if it's bothering you, it matters. Besides, it's not like you're annoyed with school and that's your *only* problem. You have CF and you're dealing with all that crap, and then ON TOP of that, you're annoyed with school. The smallest most meaningless things irritate me to no end sometimes. It happens. Especially when you've got so much crap to begin with. Everything you add to it isn't just another small problem, it's one more thing on the GIANT HEAP of crap you've accumulated already.

This place is good for support and I'm glad you found it. You've got plenty of "ears" (eyes, really) here to "listen" (read, really), and that's a great place to start. And if nothing else, I just wanted to tell you that I'm glad I'm good for a laugh. Mwahahahaa. *snort*

JazzysMom
11-10-2005, 07:40 PM
Emily my dear
I think you need to be more honest & open in your replies. LOL

JennifersHope
11-10-2005, 07:58 PM
Thanks again...All your support means a lot to me... thanks for validating my whining as well... I am almost done whining....you might be sorry you said it was okay for me to whine.... This will be my last whine post... at least for today..hahah but since you said I could.

You know how I said the dr gave me Flexaril for my pain..... it is a muscle relaxant....I DON'T RECOMMEND IT....It has been 18 hours since I took my last dose and I am still loopy from it . It made me so tired, but of course sleeping hurts..so that made for a fun night...and for some reason, my body can't get rid of the effects of the med. That always happens when I get anestheia. as well... no one ever knew why it took me so long to get the effects gone.. I looked it up in my drug guide book and it says Flexaril can last for 36 hours... Lovely.. I wouldn't mind if I could just stay in bed because it kind of made my mind numb..which felt good.really good actually....and very relaxed... I forgot what relaxed feels like but anyway it is not pracitcal to sit through a lecture and try to take care of patients with a high feeling. Thank goodness my friends took good notes....and I didn't do patient care today... just paper work.

My sinus infection is getting worse.. so I am going to my primary dr tomorrow after school..I can't tell you how good NOT it feels to be at school/ work and have everyone say."Geez Jenn your sick again" Did you call the dr?? I JUST WANTED TO DO MY CLINICAL.....but that is what I get for being around drs and nurses... I know they care..but gosh it is so embarassing.. I just wanted to do my school work.... Everyone keep telling my teacher to send me home... I am doing my clinicals where I work, actually in the same department where I work oddly enough...so everyone knows my history... and I am sick of being embarrassed...

I am beginning to wonder if their is truth to this muscle pain before an infection because this is the second time this has happened to me... I also had a bone scan today to track the bone trouble and with the week I am having.... I don't know if I want the results or not...


Anyway, thanks for you eyes and ears....once again you guys really know how to make my poopie day better...


Love and so much appreciation...

Jennifer


I wanted to say to laural, I didn't post for you to feel bad for me..... I was just venting... I really am okay.... I have lots of ppl who love and care about me a great deal..... I really do have a good life.when I am not feeling sorry for myself.. ..I don't know what kind of support group you are going to....but just so you know, CF doesn't mean a gloom and doom life.... I have a very mild form of CF, I just have a bunch of other medical conditions that make things worse for me... You are so sweet to want to take care of me though.. I really am okay.. Just finding some freedom in venting....I know it is hard to accept CF trust me you are talking to the queen of denial here... but good for you for joining this group..