Struggles

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scottguy

New member
I'm nearly 28, and up to the last couple of years have been reasonably healthy; good appetite, relatively healthy numbers, very friendly, rarely depressed, etc.
Having said that, one of the most challenging aspects (for me) of having CF has been the feeling of being alone. Cheesy as it probably sounds, I hate that I have never met another living soul with the disease. I see pics of peoples online with it or steal quick glances in the rooms at clinic, but other than that...nothing. I know we are supposed to avoid eachother physically as much as possible, so no hope in that changing anytime soon.
Recently I have started having dreams in which I know other people with CF and that has been so incredibly frustrating, waking up and realizing that there's no one like me in my life.
I am married for 3 years, have a wonderful and loving family around me, but still...part of me remains empty and unfulfilled and that is (other than the obvious lung issues) the hardest part of the disease.
What do you go through?
 
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scottguy

New member
I'm nearly 28, and up to the last couple of years have been reasonably healthy; good appetite, relatively healthy numbers, very friendly, rarely depressed, etc.
Having said that, one of the most challenging aspects (for me) of having CF has been the feeling of being alone. Cheesy as it probably sounds, I hate that I have never met another living soul with the disease. I see pics of peoples online with it or steal quick glances in the rooms at clinic, but other than that...nothing. I know we are supposed to avoid eachother physically as much as possible, so no hope in that changing anytime soon.
Recently I have started having dreams in which I know other people with CF and that has been so incredibly frustrating, waking up and realizing that there's no one like me in my life.
I am married for 3 years, have a wonderful and loving family around me, but still...part of me remains empty and unfulfilled and that is (other than the obvious lung issues) the hardest part of the disease.
What do you go through?
 
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Printer

Active member
Scott:

I'm 72 dx at 47 and I have only met 2 people with CF. One at the Annual CF Dinner (an adult). The second was a chance meeting with a parent that I had met prior, this time she was with her 14 yo DD, with CF.

Hope this helps.

Bill
 
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Printer

Active member
Scott:

I'm 72 dx at 47 and I have only met 2 people with CF. One at the Annual CF Dinner (an adult). The second was a chance meeting with a parent that I had met prior, this time she was with her 14 yo DD, with CF.

Hope this helps.

Bill
 
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Havoc

New member
There are several of us on Skype and we occasionally video chat. It might be the closest thing we can get to interaction with one another. I will PM you my Skype name.
 
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Havoc

New member
There are several of us on Skype and we occasionally video chat. It might be the closest thing we can get to interaction with one another. I will PM you my Skype name.
 
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erock77

Member
I knew many CF'ers when I was young and went in the hospital a lot. Before seclusion started. It was really cool, sorry to say for you. However, if you don't have MRSA or Cepacia there's an annual CF education conference & and more importantly Adult CF Retreat in the San Francisco bay area. It's in August. I went for 2 years and it was a life-changing experience. I Highly recommend going, though I hear it's getting a little crowded. I can't go in the foreseeable future since I've had MRSA the last 2-3 years. Non-CF companions are welcome as well, it's at a convent and you can live on-grounds for the week.

As far as your question, I hate coughing in public. And the impending randomness of hemoptysis (I'm a bleeder). And that I don't feel I can work full time anymore and must deny more interesting jobs b/c of it.
 
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erock77

Member
I knew many CF'ers when I was young and went in the hospital a lot. Before seclusion started. It was really cool, sorry to say for you. However, if you don't have MRSA or Cepacia there's an annual CF education conference & and more importantly Adult CF Retreat in the San Francisco bay area. It's in August. I went for 2 years and it was a life-changing experience. I Highly recommend going, though I hear it's getting a little crowded. I can't go in the foreseeable future since I've had MRSA the last 2-3 years. Non-CF companions are welcome as well, it's at a convent and you can live on-grounds for the week.

As far as your question, I hate coughing in public. And the impending randomness of hemoptysis (I'm a bleeder). And that I don't feel I can work full time anymore and must deny more interesting jobs b/c of it.
 
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nocode

New member
Good thread Scott. I think most of us feel similar to you. I often think that it's kinda of unfair that we're not even able to hang out with other CFers - people who know exactly what we go through.

I also hear from different people that the cross-infection risk is not quite as high as some doctors advocate and that we can be together, depending on the bacteria that we have.

I was recently made redundant at my job and I'm thinking of trying to find work (probably voluntary) helping out disabled kids, or something along these lines. The reason is that I get tired of being surrounded by healthy people and ending up feeling like I'm the only sick one/ different one when everybody else around me enjoys great health!

I think I need to be able to put things in perspective again and not feel like a victim all the time.
 
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nocode

New member
Good thread Scott. I think most of us feel similar to you. I often think that it's kinda of unfair that we're not even able to hang out with other CFers - people who know exactly what we go through.

I also hear from different people that the cross-infection risk is not quite as high as some doctors advocate and that we can be together, depending on the bacteria that we have.

I was recently made redundant at my job and I'm thinking of trying to find work (probably voluntary) helping out disabled kids, or something along these lines. The reason is that I get tired of being surrounded by healthy people and ending up feeling like I'm the only sick one/ different one when everybody else around me enjoys great health!

I think I need to be able to put things in perspective again and not feel like a victim all the time.
 
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scanboyd

Member
I worked in a hospital for 35 yrs., took care of all kiinds of sick patients, aids to pneumonia or what ever. I was no more sick than my fellow workers as far as catching bugs, I diid use mask and gloves when appropriate. Have met many Cfers at the CF walks in yrs. past as well as this yr. . We travel several trips a yr. with my sister who has CF and her husband and to my knowledge have never contimated each other.
I have never been told to stay away from folks that have CF. Read about it only.

Wash hands regullarly, hands out of mouth, now that I am retired, if some one has cold keep my distance, not run away but keep distance.
 
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scanboyd

Member
I worked in a hospital for 35 yrs., took care of all kiinds of sick patients, aids to pneumonia or what ever. I was no more sick than my fellow workers as far as catching bugs, I diid use mask and gloves when appropriate. Have met many Cfers at the CF walks in yrs. past as well as this yr. . We travel several trips a yr. with my sister who has CF and her husband and to my knowledge have never contimated each other.
I have never been told to stay away from folks that have CF. Read about it only.

Wash hands regullarly, hands out of mouth, now that I am retired, if some one has cold keep my distance, not run away but keep distance.
 
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amessofphotos

New member
I feel the same way. At my clinic I have asked about support groups and stuff and they say NO and tell me we are not supposed to meet so that wont work. They dont even have an online forum or anything to get to know others at the clinic which i think is a shame. I have known others with cf but that was back when my health was good and cf was just a diagnosis for me. Now that I want and need the support I can't seem to find it anywhere but online.

The biggest frustration for me with cf is that I have a ton of other random stuff going on with my body (low grade fever, chronic pain, increased shortness of breath/sputum production, random recurring rhabomyolosis) and because of my cf they can't figure out what is causing what and I'm left feeling like crap everyday with relatively good lung function so i'm dreading living everyday of what looks like is going to be a long life, feeling like this.

I also hate the way that hospitals and doctors offices work in general - i hate feeling out of control.
 
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amessofphotos

New member
I feel the same way. At my clinic I have asked about support groups and stuff and they say NO and tell me we are not supposed to meet so that wont work. They dont even have an online forum or anything to get to know others at the clinic which i think is a shame. I have known others with cf but that was back when my health was good and cf was just a diagnosis for me. Now that I want and need the support I can't seem to find it anywhere but online.

The biggest frustration for me with cf is that I have a ton of other random stuff going on with my body (low grade fever, chronic pain, increased shortness of breath/sputum production, random recurring rhabomyolosis) and because of my cf they can't figure out what is causing what and I'm left feeling like crap everyday with relatively good lung function so i'm dreading living everyday of what looks like is going to be a long life, feeling like this.

I also hate the way that hospitals and doctors offices work in general - i hate feeling out of control.
 
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kayers3

New member
I've only met one other CF person, and really we were kept pretty far away from each other. I think we said "hi" and that's about it. My mom had heard about these "CF camps" they used to have when I was younger and asked my doctor about it. The doctor was very adamant, to say the least, about the terribleness of that idea. It is definitely a bummer that it is such an isolating disease.

Biggest frustration: Having to push my body to its limits and still not being able to do the things I would like to do.
 
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kayers3

New member
I've only met one other CF person, and really we were kept pretty far away from each other. I think we said "hi" and that's about it. My mom had heard about these "CF camps" they used to have when I was younger and asked my doctor about it. The doctor was very adamant, to say the least, about the terribleness of that idea. It is definitely a bummer that it is such an isolating disease.

Biggest frustration: Having to push my body to its limits and still not being able to do the things I would like to do.
 
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