Disappointing doctor's appointment

Kate1
  • By Kate1
  • Posted August 1, 2008 at 3:25 pm · 10 replies
0 Recommendations

Hi, everyone. I thought it might be good for me to write. I just got back from my PCP and I feel terrible. I went in there feeling positive about the appointment- some things have been better, some things have been worse, but overall I feel like I've been coping alright. I just was following up on everything with him, had a couple new things to talk about and some disability paperwork to go over. I ended up feeling horrible. I felt like because my weight is still stable and I've been able to get some exercise and get out of the house more, that I shouldn't be applying for disability after all. I felt like by emphasizing the fact that I have been working really hard to get as healthy as I can, that I came across as though I'm fine and I just don't feel like working so I've decided to apply for disability. Maybe I should have reminded him about the many hours out of the day that I spend in the bathroom (and how much this interfered with work for years, even before GP), or laying down propped up after pureed food to keep the nausea from getting too out of control. Or the sleepless nights spent waking up repeatedly with abdominal pain from soup I ate 8 hours earlier. Or the aspirating problem I've started having from time to time when I regurgitate food and acid and end up breathing it into my lungs. I also have another viral infection or something- I have a really bad cough and tightness in my chest, along with a sore throat, and fatigue (but he doesn't think it's bacterial). My inhaler isn't helping- it's just making the cough deeper and more painful. And these types of problems happen a lot. There are many different systemic things happening, and I felt like such a lazy person who just doesn't feel like working. I've been trying to keep my spirits up and make the most of this until I can get back to work part time (I was advised not to work at all until the disability goes through), and now I feel like I'm just hanging out, having a good time, waiting for a handout. I guess his reaction just tapped into all the guilt I already feel for making this decision to not go back to work right away and to go this route where I put my health first and everything else comes second. That's pretty much the decision I made. I have life-long, chronic, progressive, health problems, and if I don't just try to do the right things for myself, then I don't think the future looks very good at all. Between the GP and the Cystic Fibrosis (albeit a milder form), I just feel like this is what I need to do. I was getting sicker and sicker trying to work even 37.5 hours a week. I usually managed 25, and with a lot of difficulty, and I really felt like I was running myself into the ground.

Sorry for venting. I just feel terrible. And as usual, so many people on this site are struggling much more than I am, and I feel badly complaining, but I just need to get it out there. Maybe I should be working through this more than I am, but when I look at the big picture, and how sick I still am sometimes and how unreliable my health is, I feel like I'm doing the right thing. I just don't know...

Thanks for listening.

Kate

10 replies

JILL1226

Hi Kate I know exactly how you feel. I have had GP now for 3 years. I have runs when I feel great and think oh maybey its over then like this week I feel like crap. I was out of work for over a year and went back part time. I fill in sometimes when they need me but for me its hard to commit to extra work because I never know how I will be feeling. My doctors wont put me on disability because they say I am not ill enough. It just sucks because when I feel good I feel like I could go back full time. Then when I have a week like I am having this week I dread going to work. It is so frustrating living with this illness. It is also frustrating dealing with people like family, friends, coworkers that just dont understand. I also had to take an antidepressant for awhile to just deal with my life being turned upside down. I was really proud of myself for going off it but when I feel lousy I feel like I need to go back on the medication just to be able to get out of bed. So thanks for letting me vent and always know you are not alone. Jill

chewy1

Kate,
You don't need to apologizing to us for venting. We all take our turns at it and we all have a perfect right too.
I hate that you came away from your doctor appt feeling so upset. It really hit me hard because I have done the same thing so many times. I go to the doctor and when they say "how are you doing?" My automatic response is always "Fine". Or the question...is the nausea and vomiting improving...even if I have thrown up three times while out in the waiting room, I catch myself saying "yes, I think it's a little better" Of course, then when you try to back track or explain they have zoned out.
I'm so fortunate now that I have a doctor who has been with me through 7 years of this and now he can read me like a book. He knows when I'm sugar coating things and will listen to my first "positive" answers and then say .."o.k., now, how are you really".
I know it's hard to do, but you need to just quit worrying about what others may think, or even the "guilt" feelings about applying for the disability.
I've told you before that I'm not near as bad as many people either, but there is no way that I can work. I have tried the route of working just a few hours a day as a volunteer but I have never managed to go more than two days in a row before I'm knocked down again. I catch every virus that goes around too.
I have people who will suggest that I work as a substitute teacher (I'm a teacher) but I try to explain to them that I would be very undependable. I never know from one day to the next how I will feel and even if I actually went in to sub, I never know when I will start throwing up and need to leave..then they would have to have a sub for a sub!
I still go through the days of self-doubt and guilt. I have finally realized that is a good thing though because it does make me realize that I would be working if I could...otherwise I wouldn't think twice about being on disability.
It also helps me to remember what the judge and the occupational expert at my disability hearing said...that there are no jobs available for people who have this condition. That we never know when we would miss work and sometimes it could be a week or more at a time and that employers wouldn't want employees that will need to run to the restroom several times a day or that would need numerous rest breaks.
Knowing that the judge actually understood that fact has helped me so much with the "questioning" myself.
I know that it doesn't make it easier to accept and I wish your doctor could have seen through your effort to be so positive.
Try to quit worrying about what others are thinking. I know that is really easy to say and I need to listen to myself sometimes but you are not doing the wrong thing in applying for disability.
Take care,
Judy

mphotographer

Hi Kate-
Thanks for sharing your feelings. As Judy says, you never have to apologize to us. This is what we are here for friend! I can only begin to imagine what you must be going through, with the guilt and difficulty making decisions about work. I have been feeling so good
lately, but...I am still not eating a lot of solid food (out of fear that I will get sick again) and I have not been work. Like you, I too have been working so hard at getting healthy and stronger, exercising, etc. But I have no idea what I am going to be like when I start back to work, listening to you, Jill and Judy. I feel so hopeful that this is all going to go away (and of course that's what my mom says :-))...but....you all know that story.

I agree with Judy that you really need to try not to think about what other people think. I think you are so smart to be focused on taking care of "you", above and beyond work, etc. especially when you have multiple health issues going on. Even though you feel better at times, as you said, it sounds like working wore you out and made you sicker. Please listen to your "gut" (pun intended!!) and take care of yourself. Now I have to give myself that same advice (and I don't have the multiple issues that you have going on) when I start back to work.

I sure am thinking about you lady. Have you thought about getting a more supportive doctor? Maybe I am wrong, but it sounded like you aren't real happy with him. Please keep your chin up and keep us posted. This illness has so many different facets to it-it just sucks! Hang in there and no that we are there, as Whispper says so well, by your side as always-mphotographer

Kate1

Thank you for your responses. It helps a lot to get the support. My parents and my boyfriend are also very supportive (in fact, they have been pushing me for a while to apply for disability because they've been worried about my overall health), but it's different to hear from people who have similar problems. I know I've been stuck on this issue for a while, but I can't quite seem to let go of the guilt, especially when I feel pretty good for a couple of days. And, to be honest, I just really miss my work and getting out every day to do something that means something to me that I can be proud of.

Jill- thanks for your response. It sounds like you can relate to some of the ups and downs that go along with this illness. I'm sorry that you are unable to work but haven't had support from your doctors in applying for benefits. Have you got a second (or a third??) opinion? I don't know the details of what's going on with you, but it certainly sounds like you've been putting in your best effort, but you just can't maintain a regular job right now. I really hope something works out for you...

Judy- thanks for continuing to support me through this process. It helps to hear from you because I feel like you can really relate to some of the struggles I have been through in making this decision. I can also relate to what you said about always telling your doctor you're "fine" even when you've been feeling awful (and throwing up at the office??- that's pretty extreme!!). I always say I'm doing "pretty good" when they ask. I don't know why I feel this need to make it sound better than it is. Maybe I just want to seem like I'm strong and I'm not a complainer or something, although that really shouldn't matter. Ultimately, the doctor should be there to help me, not to judge me, I guess.

Mphotographer- thanks for your encouragement. I definitely need to be reminded from time to time not to care what other people think of my situation- especially when they don't really understand what's going on. Of course, my doctor should understand it better than most, but he doesn't always seem to get it. Luckily, my GI doctor is usually much more understanding and supportive (it was my primary care doctor I was seeing the other day, and I tend to have mixed experiences with him- not bad enough to change doctors yet, but I really dread seeing him most of the time). I think it's going to take me a while to come to terms with all of this, and this is just part of the ups and downs.

Ok, I've started to write a book here, so I'll wrap it up! Hope you are all feeling (relatively) well today.

Thanks :)
Kate

Trixie617

Kate - Thank you for your honesty & as Judy said, we have all taken our turns venting here... that is what friends are for! Although I have not considered applying for disablility (yet...) I do struggle with working vs not working. I took 5 months off after surgery & was very motivated to get myself as healthy as possible. I recently went back to work at the hospital (just weekends) & I do my very best to schedule what I eat/drink etc. to be "ok" on work days. Sometimes it works & sometimes it doesn't. It is a constant struggle to manage our nutrition, a battle to maintain weight, & symptoms -- And I feel like you that our MDs don't quite get it. We have all left our MDs feeling unheard... when they start offering the antidepressants I feel as though they have at that point written us off! I have been depressed & taken meds for depression -- but if I come to you as a doctor complaining about my stomach - (pain,bloating, nausea, constipation) -- don't offer me psychotropics!

Anyhow, all I really wanted to say is that you are not alone. You have permission to vent to me at any time. And although they went to med school, you are the only one who knows how you feel. Trust that.

Hugs -- Trixie

chewy1

Kate,
I think you got it right when you say that the reason you will try not to complain at the doctor. I always worry that I will have complained so many times that eventually the doctor will just think I'm just a number one complainer and not take me seriously anymore.
I am lucky to have the PCP that I have because he has learned to read me. He tries to remind me before I go to one of the specialists though that I need to tell things like they are or they won't take me seriously.
It's still hard to do though!
Hope you are feeling better.
Judy

Whisperingdays

Kate,

I know it is easier said then done to not question yourself time and time again about your illnesses and your reasons for applying for disability in the first place. You have every right to vent and be frustrated. I think that it just shows how great your character is and there are so many of us that are like that where honesty, but yet the longing to just say we feel great that when we do have a decent day we suffer with guilt.

I don't think you are any different then any of us here when we go to the doctor. I just had a conversation with Judy about this the other day. As I was going to go see the surgeon and I had told her that I had hoped that I would have a bad day when I went to see him as I have a bad habit when I go too see any doctor on a day that I feel somewhat normal that I tend to play things down.

I knew that if I was feelng better that day that I wouldn't be able to be as honest about how I feel and what goes on with my body as I would probably feel guilty because I might not be able to push the fact that I am really sick.

As it turned out I had a really bad GP day. So I guess I should be careful what I wish for.

I think that our longing to hold on to whatever normal part of our lives that we have left is a good thing. I know how you miss working but you are doing the right thing. You know in your heart that you can't work so please don't be so hard on yourself.

I to have problems about worrying about what other people think when it comes to my illnesses and I need to stop that as well. I feel that that is a normal feeling to have. But like all of us it can be so hard to do.

Kate you are such a great inspiration here and know that you are loved and no matter what we support you.
As I always say, I am by your side. Please hang in there you can do this and get the disability you deserve.

Big hugs,

Whispper

spook1986

Dear Kate,

Sounds like your doctor lost track of your history. Should you, perhaps, see someone else with more objectivity? Whatever you do, good luck. Let go of the guilt. You sound way to sick to try and work.
Linda

Kate1

Trixie, Whispper and Spook- Thank you for writing. I can't tell you how much it means. I know I'm still going to be hard on myself from time to time through this process, but it helps to get all of this support. It means so much to be able to come here and just put it all out there- from talking about the stress of the disability process to the stress of the illness/es in general.

I can't say enough about how wonderful you have all been. Thanks so much for being there, and I hope my support is helpful to you as well.

Kate

KathyG

Kate,
Honey take care of yourself and get the disability. You deserve it as much as anyone and don't feel guilty about it. On your good days since you are not working find yourself a hobby. Something that you really enjoy. We have talked and you know all about my grandson. You have to take care of yourself that is the number one thing that you need to do. I just put up a new post about my grandson he is getting worse. I have lots of faith and hope. As long as I can breathe I will keep searching for him. It sounds like you have a great family support team behind you. God Bless You.
KathyG

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