[yokus]

I couldn't make myself go to pulmonary rehab today. Everything seems so futile. I'm embarassed to go out in public at all anymore with my face ballooned up the way it is because of steroids. My hair is falling out. I know they make me more depressed and irritable. I'm still on 20 mg. prednisone a day. Still taking 80 mg of lasix but it doesn't seem to keep up. I still have to keep the oxygen on at night and if I get busy during the day too.

I've considered over and over trying to go to one of the teaching hospitals that specialize in lung disease but it seems so overwhelming that I wouldn't know where to begin. My pulmonologist comes right out and says that he doesn't know, to most things I ask.

This really does sound like a lot of self pity, but I'm slipping and I know it and feel like I've finally just run out of steam. He's tapering down the steroids very slowly but doesn't know if I will have to take them from now on.

When I start to get short of breath I panic. Five times of having ards and being on a ventilator, what are the chances of that happening again? Really good. I am the type of person to "do" something about a bad situation but with this I feel helpless. There's not much that I can do during the course of a day but what I don't feel exhausted.

I sit here in this quiet house all alone and wish that there was someone that I could talk to. I even have an appt. with my counselor today but I don't feel like there's anything I can do. Just wait and wait. I used to be able to get gung ho about doing something like getting a lot of exercise. But now I can't do very much. And I'm just not happy with myself at all. Five years ago I was still playing tennis and working and playing on a softball team, volleyball, wallyball, bowling. Impossible now.

I guess this isn't a post that really requires a response. Just thought that I would throw it out there and throw caution to the wind. It is, after all, who I am. I just don't like that person anymore. The past three years have been spent just recovering from yet another episode. Oh well, enough is enough. I'm so glad that all of you are here on this wonderful site. I don't post much. Guess I'm afraid of saying the wrong thing. Life is not what you make it as the old saying goes. It's more like life has you in a vise grip and you can't control much of anything.

[Rapunzel]

{{{{{{{{{{{{{{{{{{{{Janet}}}}}}}}}}}}}}}}}}}}}

I'm not sure what to say but there's a hug. I'm glad you're here.


<font color=green>"Loneliness does not come from having no people about one, but from being unable to communicate the things that seem important to oneself, or from holding certain views which others find inadmissible" Carl Jung</font color=green>

[nightdream]

I'm so sorry that you were so physically active and that now you are at a stop. Maybe you could find something to do with your mind now like research on the computer on something that interest you. I was a nurses aid and I can't do that job anymore because of work injury but because it is so much a part of me to help others in medical field I always keep my mind going by searching on the computer and upgrading myself on medical ground. Just to complete myself in that field because it is so much a part of me and I can't let it go. So I find this way to help me cope because i can't do the job anymore. What I really want to say is maybe you can find something to keep busy but it will not be physical.

Like you I usually don't say too much in here because I'm also scare to say the wrong words. But I know there is kindness here and friendly people so I keep coming even if I don't say much.

Take good care! (((((((((((((((((Yokus)))))))))))))))))) I care for you!

nightdream

[SeptemberMorn]

Hi This came to mind as I read your post. Please don't be offended by the title. That's not my main point but rather the rest of the poem.

SLOW ME DOWN, LORD !

Slow me down, Lord!
Ease the pounding of my heart
By the quieting of my mind.
Steady my harried pace
With a vision of the eternal reach of time.

Give me,
Amidst the confusions of my day,
The calmness of the everlasting hills.
Break the tensions of my nerves
With the soothing music
Of the singing streams
That live in my memory.

Help me to know
The magical power of sleep,
Teach me the art
Of taking minute vacations
Of slowing down
To look at a flower;

To chat with an old friend
Or make a new one;
To pat a stray dog;
To watch a spider build a web;
To smile at a child;
Or to read a few lines from a good book.

Remind me each day
That the race is not always to the swift;
That there is more to life
Than increasing its speed.
Let me look upward
Into the branches of the towering oak
And know that it grew great and strong
Because it grew slowly and well.

Slow me down, Lord,
And inspire me to send my roots deep
Into the soil of life's enduring values
That I may grow toward the stars
Of my greater destiny.

Wilferd A. Peterson.



<font color=blue>"The winds of change continue rolling and they just carry me away."</font color=blue>

[PlanningtoLive]

I am so sorry that you feel like this.

My back is hurting more these days as well, so I can understand the frustration you feel. I hope the feelings disappear quickly - you are very much loved here.

Mary Alice

[dexter]

Hi yokus

( ( ( ( ( ( ( ( yokus ) ) ) ) ) ) ) )

I relate to so much of your post, through many periods of my life. My "adventure" with prednisone took place when I was in high school so I went from a tiny, skinny little kid (who used to occasionally pass out from my illness and was often sent home from school) and then suddenly I was very large, both from the massive eating and weight gain that the steriods bring on, plus the "moon face". It was a difficult time for me in school, I already was somewhat of a misfit. My illness however made me realize alot about my life and things got much better for me, personality-wise, after that.

As you know my current problem is my arthritis. I just posted something in the new "health" forum. The arthritis is not health-threatening but it is lifestyle-threatening. I also have had several life-threatening, near death experiences in the course of my life from health problems. I did not have to deal with those at the same time as dealing with the depression I have now. The depression makes these kinds of things 1000 times worse. More hopeless, more futile.

The depression makes it so hard to be or stay motivated toward fighting the physical illness, from keeping a good outlook to making and keeping doctor appointments to just having an attitude of fighting the illness, which I have always believed is as important an element in healthcare as is prescribed medicines.

And of course the illness contributes to the depression, hopelessness of a changed lifestyle, continued discomfort and fear.

Classic catch-22

Does your pulmonary doc know about your depression? I hope he is one of the doctors who understands the seriousness of mental illnesses and how they effect treatment of other medical issues.

I also relate to the lonliness becasue I am alone im my house everyday trying to deal with my depression and my arthritis and everything else going on, no family to help or "fall back on" and friends have largely abandoned me.

All I can say is please hang in and keep posting here. I hope talking about it here helps. good luck an d i hope that things in one area will improve soon, and hopefully the other areas will improve as well.

-- The world is what we make of it --
-- Dave
-- <A target="_blank" HREF=http://www.idexter.com>http://www.idexter.com</A>

[yokus]

Thank you everyone for your kind responses. No I wasn't offended by the poem at all. I thought it was wonderful. Since this last episode I think the reality has finally sunk in and I look at things a lot differently than I used to. I do what needs to be done and I say what's in my heart. Because you just never know. My psychologist has an assignment for me before I come back again. I'm supposed to call the national jewish hospital in denver colorado that specializes in lung disease and see if I can't set up a second opinion. Thank you once again from the bottom of my heart.

[inkblot]

Hugs to you! I know it's hard. Up until 2 years ago, I could run and jump and play more with my kids. I can't climb on the playground toys with them anymore, and I have a little one who still needs help. My job makes my problems more painful and worse, too. It really bothers me also when my physical problems affect my abilities. Try to hang in there and take each day one at a time. I know that it's frustrating right now, but eventually it will be easier to accept what life gives us.

[somebodyelse]

Your psychologist sounds like he/she is one smart cookie. I think that the second opinion assignment is perfect! After all you've been through, and hearing your Dr. repeatedly say, "I don't know", you really should have the benefit of that second opinion.

I'm so sorry that your activities have been so severely curtailed by your illness. Of course that makes your depression worse. I understand that, because my mental and physical problems have caused me to be grounded from skydiving, which has been my passion and lifestyle for seven years. Also, I'm limited in what I can do with my grandchildren.

We all just have to hang in there together, huh?!

[(JD)]

Hello yokus. I know exactly how you feel. I had my first "breathing" problem at age 3... they didn't dx me then and no one in my family (including me) knew if what I had or if I would live... it was all caused by allergies... developed into emphysema and COPD. Life isn't any fun when you can't breathe.
I was on prednisone for umpteen years, yet never had the weight gain problem, I think because we were poor and I didn't have access to more food. ? After nearly dying countless times, taken "home" to die, I found an allergist who found I was allergic to everything and had a new treatment that allowed me to live while it immediately desensitized me (duration of shots only). Later I found an herb that cured my 6 month long bronchitus... and I use it whenever I can't breathe.
Anyway... that isn't my problem anymore... but I know where you are... just thought you'd wanna know. : }

Please research anything I suggest before believing...