IV's for me.

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luke

Guest
I have been feeling really crappy lately, but....work has been hectic and my brother got married last week end so I just haven't had the time to be sick. So yesterday I finally got a spirometry done, they were the worst they have ever been. Hence, the next three weeks will be spent with 2 of my closest and reliable friends, tobramycin and Primaxin. I always get upset when my tests suck because frankly I don't want to die. I found myself being mean to the one I am closest to, my wife, out of frustration I guess. I know she will always be here for me and I love her just as much as she loves me. But when it comes to my health declining I ALWAYS feel all alone. I know that so many people care about me and my health but I can't stop thinking that I am the one going through this. I am the one that will be luckly to get just 10 more years. I don't know just ranting I guess... Does anyone get these feelings every time their health declines?

For those who pray, pray, for those who hope, hope....But if you don't mind I could use it today.



luke
 
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JazzysMom

New member
I do understand where you are coming from. I had a checkup on 10/11 & things showed a great improvement since my episodes earlier in the year. Only to be followed my extreme fatigue, weight loss, irritability, increased cough & overall feeling less then I did on the day of checkup. The following days after the checkup were very hectic for me. I was maid of honor in my friends wedding & no matter how much I pace myself, there was still a lot to do & it took its toll. My daughter is having an emotional time which puts stress on me although I think the wedding is catching up with her also. She was flowergirl & was alongside me most of the time doing work for 5 days. My husband is the one taking the heat. He has been neglected terribly this week while I try to hold my sh-- together & not let my health decline. Just as it is for me in the past, I am sure it is for you. Time, Patience & Deligence will pay off. Its always scary & frustrating when we have a set back, but I have faith that you will get thru this little episode!


I cant say I will pray for you, but my thoughts are definitely with you for what that is worth!
 
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anonymous

New member
I am in the same boat. I went to the Dr and had the worst PFT's I have ever had. I cannot even remember what was said to me after that because I was freaking out so much inside. I went into the hospital for a few days and now I am doing the home IV thing. I do sometimes feel very alone as well. My husband is extremely supportive, but it is still me going through it. We all just have to hang in there. We will make it through this rough patch one more time and hopefully be stronger on the other end.

Rosie
 
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nobody

New member
Hey Luke,
You are not alone in those feelings. I am currently in the hospital (one week now) and feel very alone. I get a visit from my wife almost everyday, but find myself getting upset at her for real stupid things. My best 'fix' for this is to put her first when she's here. Sometimes it works. My PFT's - coming to clinic were the worst I've had for 5+ years - but are almost back to baseline. I also will hope and pray!
-steve
 
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cfmom2rt

New member
My son is 3 & I HATE going to clinic cuz it seems like everytime we go he gets BAD news or he has to be admitted. And then your life stops @ least for me. I cant live out of a hosptial, I HATE being in the hosptial & waiting on the nurses to bring his med when Im the one who cares for him @ home!! You know how hosptial visits are, But I think they may be a little dif for younger kids then older ones. Anyway, I dont have CF but I see it everyday living w/ my son & I HATE CF!!!!! Well sorry if I went Off I did'nt mean to, Its just that seeing your baby go through "CF" stuff it breaks your heart NOBODY should have to go through it. Okay now, Luke I totally pray & I will definetly be praying for you, as Reece & I always pray for all the CFers in the world evey night!!! Stay strong!!
Leah~ mommy 2 Reece w/cf<img src="i/expressions/angel_ani.gif" border="0">
 
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JennifersHope

New member
Hey Luke,

I just wanted to say you are not alone... We all go through this... When my health declines and I am in the hospital it freaks me out because most of the time, I live a very productive life with little reminder that I have CF. So when my PFTS go down or I am in an exacerbation it is like being smacked in the face.....

I tend to be very moody with the ppl I am closest to.. I will call them on the phone constantly and then get upset with the things they say.. (I think that has to do with the high amounts of steroids) Then after I hang up, I obesess over the things I said and feel like crap for being so moody.. It is like a catch 22.

From what I have read in your posts, you are mostly healthy, so maybe you can get some good IVS in and flip CF the bird once again....

I do pray and I do hope so I will do both for you.. For me sometimes just knowing other ppl know how I feel brings comfort so I hope the same applies to you....

Keep us posted....

Jennifer
33 w/CF and Addison's
 
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Diane

New member
Hi Luke,
I can certainly relate to what you are feeling. Any time i get sick i get severely depressed and find it hard to get myself out of the depression till i start feeling better. What i found odd when i found out i had cepacia 8 -1/2 years ago was.... I was going thru a divorce at the same time i found out i had b.cepacia, every time i had to have an iv or go into the hospital i missed my soon to be ex-husband. I couldnt figure out why, because any other time i liked my time alone and independance. Then it hit me one day....i dont miss HIM, I miss a time that he represents to me.... a time i was healthy. The whole time we were together i was very healthy with no real health problems. Once i came to that conclusion i dont miss him anymore when i get sick i just miss being healthy. None of us wants to die, and when we go on an iv its kind of a reality check and we consider it almost a setback. I remind myself i can only do so much and will do the most i can to fight this illness and try not to think of the negative. It isnt easy to not think negatively when you are on iv's but i kind of like what my doctor said once....Its a bump in the road and you get over it and you will pass it. Ill keep you in my prayers............
 
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WinAce

New member
Here, have some good thoughts. And the best part is, they only cost two cents worth of commentary!

I try to take solace in the fact that my wife (hopefully) will never have to experience CF, first hand. And it's no small comfort that those we loved would take the disease from us, if they could. But I understand what you mean. I think Keats expressed it best:

<i>When I have fears that I may cease to be
Before my pen has glean'd my teeming brain,
Before high-piled books, in charactery,
Hold like rich garners the full ripen'd grain;
When I behold, upon the night's starr'd face,
Huge cloudy symbols of a high romance,
And think that I may never live to trace
Their shadows, with the magic hand of chance;
And when I feel, fair creature of an hour,
That I shall never look upon thee more,
Never have relish in the faery power
Of unreflecting love;--then on the shore
Of the wide world I stand alone, and think
Till love and fame to nothingness do sink. </i>
 
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Allie

New member
Oh, Luke, you poor thing, I wish I could tell you something that would change it all for you and make you not feel the way you do. But the only thing I have is that others are going through it. Whenever Ry would get sicker and have to be on Iv's, he always got edgy with me, which in turn made me edgy, and it was a lovely cycle. lol. But I realized, in time, that he wasn't really mad at *me*, he was mad at CF and the unfairness of it all. I'm sure your wife will come to the same. And at least you do realize that she loves you, even when you are being cranky. <img src="i/expressions/face-icon-small-wink.gif" border="0">

It's always that moment of reality that so many us try to avoid that causes all this 'deep' thinking. Believe me, for a good number of years I was Cleopatra, Queen of Denial. And unfortunately, when you get sick, you have to cash the reality check. BUt there's always hope for a better tomorrow. FIght for you, fight for your wife, fight because the sun comes up each morning.

I will be praying for you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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luke

Guest
I am starting to feel a little better going into I.V. day IV (sorry I couldn't resist the Roman numeral relation). I am doing pretty well on not focusing on my crappy PFT results. Last time they went down I went into a month long depression so I have been working hard on staying positive. I was relieved to get my meds running and "mentally" felt better the next day. So much of this disease is mental toughness, occasionally these tests get the best of me (as they do most I guess) and I lose my cool. I suppose one of the things that separate us from the general population is our ability to regain our composure and start kicking this disease right between the eyes again. So 14 days and 15% (the amount I dropped) to go. I have been focusing on gaining 1% a day, I will get them back to baseline!!

Thanks to everyone for your thoughts and prayers, I appreciate all of the support.



Luke
 
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abloedel

New member
I hope you are feeling better Luke! I caught some bug this summer where I didn't really feel "bad" in the overall scheme of things, but initially I lost 25 pts of my PFT's, now it seems to have stablized at a loss of 15.

I too, feel like I treat my husband like crap sometimes. I do wonder if on some level if it's not because I don't want him to see me die or be burdened with that aspect of CF. I try to be nicer to him, but also, I think that sometimes I am "mean" to him because he's the only one I talk to about this. Not fair, I know. Just wondering if any of this was the case with your wife.

Hang in there. IV's (day V will be just around the corner) will kick in soon and increase your PFT's!!!

Amy
36 w/CF
 
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