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Seriously losing my mind

M

Mommafirst

Guest
Jennifer -- I'm really happy for you, but I can understand how emotionally upheaving this must be. Since it is not Cf, have there been any attempt to explain the cultures of PA and MRSA? Is this why you had IVs in the past? I'm glad you don't feel that any hospitalization or IV was unnecessary -- that would be a very difficult way to live, looking back with regret.
 
J

JennifersHope

New member
They really can not say for sure about the PA or the MRSA. The Mrsa they can more likely say because health care workers sometimes carry and culture that just from being around so much sickness.

The PA, they wonder if I got because for one my lungs are not normal lungs they are weaker, and for two, I have been on so many steroids and so immune compromised that I may have picked it up that way.

We dont' know, I do not feel the IVs were not necessary I was very sick, at one point I was on O2 and Bi Pap, but I just kept getting better after each sickness which is not really consistant with CF, plus my lungs on x ray didn't look bad.

One thing that is hard on me is that I was on Pancreatic enzymes that were very, very expensive and sometimes I paid out of pocket for them, and not only did I not need them, what they called DIOS at the time which caused me to have a ruputured bowel was most likely caused from taking enzymes when I didn't need them. THat part and the part about chosing to not have children STINK but I am still numb with periods of totally freaking out elated to feeling guilty.

Today for the first time ever I bought a Christmas tree, my dear friend John that died of CF loved Christmas decorations and lights. Not only did I buy my first tree that came with lights, I bought tons of extra lights and put them all over the tree, in his honor.

My dad cried today when I told him, this was the first chance I had to tell him, he kept saying over and over again that he was so fearful he was going to outlive me. I just feel spent, overwhelmed and elated, while I can put this behind me for me, CF has been a part of my life for 10 years and I have made some special bonds so I am not giving them up...

I don't know that we will have a real dx for me, I am very badly asthmatic, and deathly allergic to a few things in the environment and when I get enough rest, don't work and eat right I feel okay

Thanks for caring and letting me vent. I don't know where I fit in right now
 
J

JennifersHope

New member
They really can not say for sure about the PA or the MRSA. The Mrsa they can more likely say because health care workers sometimes carry and culture that just from being around so much sickness.

The PA, they wonder if I got because for one my lungs are not normal lungs they are weaker, and for two, I have been on so many steroids and so immune compromised that I may have picked it up that way.

We dont' know, I do not feel the IVs were not necessary I was very sick, at one point I was on O2 and Bi Pap, but I just kept getting better after each sickness which is not really consistant with CF, plus my lungs on x ray didn't look bad.

One thing that is hard on me is that I was on Pancreatic enzymes that were very, very expensive and sometimes I paid out of pocket for them, and not only did I not need them, what they called DIOS at the time which caused me to have a ruputured bowel was most likely caused from taking enzymes when I didn't need them. THat part and the part about chosing to not have children STINK but I am still numb with periods of totally freaking out elated to feeling guilty.

Today for the first time ever I bought a Christmas tree, my dear friend John that died of CF loved Christmas decorations and lights. Not only did I buy my first tree that came with lights, I bought tons of extra lights and put them all over the tree, in his honor.

My dad cried today when I told him, this was the first chance I had to tell him, he kept saying over and over again that he was so fearful he was going to outlive me. I just feel spent, overwhelmed and elated, while I can put this behind me for me, CF has been a part of my life for 10 years and I have made some special bonds so I am not giving them up...

I don't know that we will have a real dx for me, I am very badly asthmatic, and deathly allergic to a few things in the environment and when I get enough rest, don't work and eat right I feel okay

Thanks for caring and letting me vent. I don't know where I fit in right now
 
J

JennifersHope

New member
They really can not say for sure about the PA or the MRSA. The Mrsa they can more likely say because health care workers sometimes carry and culture that just from being around so much sickness.
<br />
<br />The PA, they wonder if I got because for one my lungs are not normal lungs they are weaker, and for two, I have been on so many steroids and so immune compromised that I may have picked it up that way.
<br />
<br />We dont' know, I do not feel the IVs were not necessary I was very sick, at one point I was on O2 and Bi Pap, but I just kept getting better after each sickness which is not really consistant with CF, plus my lungs on x ray didn't look bad.
<br />
<br />One thing that is hard on me is that I was on Pancreatic enzymes that were very, very expensive and sometimes I paid out of pocket for them, and not only did I not need them, what they called DIOS at the time which caused me to have a ruputured bowel was most likely caused from taking enzymes when I didn't need them. THat part and the part about chosing to not have children STINK but I am still numb with periods of totally freaking out elated to feeling guilty.
<br />
<br />Today for the first time ever I bought a Christmas tree, my dear friend John that died of CF loved Christmas decorations and lights. Not only did I buy my first tree that came with lights, I bought tons of extra lights and put them all over the tree, in his honor.
<br />
<br />My dad cried today when I told him, this was the first chance I had to tell him, he kept saying over and over again that he was so fearful he was going to outlive me. I just feel spent, overwhelmed and elated, while I can put this behind me for me, CF has been a part of my life for 10 years and I have made some special bonds so I am not giving them up...
<br />
<br />I don't know that we will have a real dx for me, I am very badly asthmatic, and deathly allergic to a few things in the environment and when I get enough rest, don't work and eat right I feel okay
<br />
<br />Thanks for caring and letting me vent. I don't know where I fit in right now
 
M

Mommafirst

Guest
I was thinking back to when you were making the children decision. If I recall, you were really sick and had other non-cf issues that led you down that road. Does this open the possibility for adoption in your life?? ((((HUGS)))) none of this is easy, that's for sure, even when you can escape the diagnosis, it still has been a long 10 years for you.
 
M

Mommafirst

Guest
I was thinking back to when you were making the children decision. If I recall, you were really sick and had other non-cf issues that led you down that road. Does this open the possibility for adoption in your life?? ((((HUGS)))) none of this is easy, that's for sure, even when you can escape the diagnosis, it still has been a long 10 years for you.
 
M

Mommafirst

Guest
I was thinking back to when you were making the children decision. If I recall, you were really sick and had other non-cf issues that led you down that road. Does this open the possibility for adoption in your life?? ((((HUGS)))) none of this is easy, that's for sure, even when you can escape the diagnosis, it still has been a long 10 years for you.
 
J

JennifersHope

New member
Thank you so much for understanding, and Yes it is amazing to remove the dx, like I said and my doctors remind me, it doesnt change anything about how sick I have been, how sick I get etc. What changed is the reason that I get this way.
which really didn't change anyway, just the reason we thought.

It is scary, because if it wasn't for the Nasal PD we would never know, since I test positive via sweat tests and have two genes.... So weird.....

Before I consider adoption, which I do not have the money for, but the truth is, I don't think I can handle having a child now, I get worn out easy, sick easy, and it is hard enough to deal with my dog when I am sick... Maybe 10 years ago it would have been easier, plus at that time I was dating someone that really wanted to have biological children... He was adopted and just wanted his own children, when I was dx, I left him against his will, but he moved on and how has three beautiful children and I am so happy for him. His wife honestly is an amazing women and perfect for him

I am not bitter, my doctors in NJ did the best they could with the information they had, in addition I really was sick with PA and MRSA and they needed to treat that. They are amazing and to this day I still talk to them. I adore them.

I am grateful and feel guilty all at once.

Thanks again
 
J

JennifersHope

New member
Thank you so much for understanding, and Yes it is amazing to remove the dx, like I said and my doctors remind me, it doesnt change anything about how sick I have been, how sick I get etc. What changed is the reason that I get this way.
which really didn't change anyway, just the reason we thought.

It is scary, because if it wasn't for the Nasal PD we would never know, since I test positive via sweat tests and have two genes.... So weird.....

Before I consider adoption, which I do not have the money for, but the truth is, I don't think I can handle having a child now, I get worn out easy, sick easy, and it is hard enough to deal with my dog when I am sick... Maybe 10 years ago it would have been easier, plus at that time I was dating someone that really wanted to have biological children... He was adopted and just wanted his own children, when I was dx, I left him against his will, but he moved on and how has three beautiful children and I am so happy for him. His wife honestly is an amazing women and perfect for him

I am not bitter, my doctors in NJ did the best they could with the information they had, in addition I really was sick with PA and MRSA and they needed to treat that. They are amazing and to this day I still talk to them. I adore them.

I am grateful and feel guilty all at once.

Thanks again
 
J

JennifersHope

New member
Thank you so much for understanding, and Yes it is amazing to remove the dx, like I said and my doctors remind me, it doesnt change anything about how sick I have been, how sick I get etc. What changed is the reason that I get this way.
<br />which really didn't change anyway, just the reason we thought.
<br />
<br />It is scary, because if it wasn't for the Nasal PD we would never know, since I test positive via sweat tests and have two genes.... So weird.....
<br />
<br />Before I consider adoption, which I do not have the money for, but the truth is, I don't think I can handle having a child now, I get worn out easy, sick easy, and it is hard enough to deal with my dog when I am sick... Maybe 10 years ago it would have been easier, plus at that time I was dating someone that really wanted to have biological children... He was adopted and just wanted his own children, when I was dx, I left him against his will, but he moved on and how has three beautiful children and I am so happy for him. His wife honestly is an amazing women and perfect for him
<br />
<br />I am not bitter, my doctors in NJ did the best they could with the information they had, in addition I really was sick with PA and MRSA and they needed to treat that. They are amazing and to this day I still talk to them. I adore them.
<br />
<br />I am grateful and feel guilty all at once.
<br />
<br />Thanks again
 
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