Stephanie78
09-13-2011, 03:00 AM
Be forewarned, this is my venting post!
One thing I have learned with John being sick with WG is that it can bring families close together OR futher apart. My family has rallied around us. Granted they are located in the same state/town as us, but still. My parents have taken over as parents for our two kids everytime John has been hospitalized. They have visited him while in the hospital 3 hours away and have helped in any way possible (even with gas/hotel room expenses....That we never asked for OR expected... Just wanted to make that clear)
The only family members I have called on a regular basis has been my parents. Main reason... THEY HAVE OUR KIDS. Everyone else I have texted. Reason 1- Texting is free from my cell and calling is not. Reason 2- I haven't felt like really talking to anyone, I tried that in the beginning and I was repeating everything 50 times a day (therefore I use facebook to update on Johns condition so all the friends/family can see it)
In a recent post I made reference to some of Johns family coming to visit and how I felt attacked by them. I guess it is easy to judge or criticize someone when you can fly into town for a couple of days and then go home to your normal life while I am a permemant fixture who deals with it hourly.
I feel that because they are not here to deal with it they lack the education on how serious this disease really is. I mean Yeah you can google all you want, but I think we ALL on this forum know that the internet is a pile of crock when it come to what really goes on with this disease (Other then from personal testimony like on this forum).
John actually ignores phone calls from one relative at times because he just doesn't want to deal with him. He will finally answer a day or two later because he has ignored several and feels that he needs to acknowledge him. Things that this person says to John is just down right rude and inconsiderate
Example: During one conversation he said to John "I gotta go to work tomorrow, I'm not lucky like you and get to stay home laying around all day". The sad part is, when John told me that, he did not seem surprised. In fact his exact reply to me when telling me about it (Because I was surprised) was "You act surprised that he would say something like that, I'm not" (sad huh?)
So now we go to the current situation. Johns mom has stage 4 ovarion cancer that has spread to many other organs/locations and hospice has been contacted. I know that IF it were my mom I would want to be there. When John found out how bad it had gotten (maybe a couple of weeks ago) I didn't give any opinions on what he should do. When he talked to me about the situation I made it clear that I would respect whatever the Doctors said about him traveling. Do I want him traveling 1200 miles away from the hospital and his doctors NO WAY but was I going to be the one to stop him ABSOLUTLEY NOT! When he went in to see Dr. Falk that week, he asked him about traveling. Dr. Falk explained to him that he understood that it was his mom, he understood that anyone would want to be with their loved one during that time. He also explained how he understood Johns pain BUT that his main goal was to keep John alive and the trip that far alone could put John back in the hospital (from exhaustion). But since it was "sick season" and infection could kill him. He told John that he could NOT travel away from the hospital and that he encouraged him to use SKYPE and phone calls to communicate with his mom for closure. He said that his moms situation was a very sad one, he knew it was hard but that with her situation her life would be shortened definitley. He then followed with his goal with John was to make his not follow the same path and for him to be here to finish raising our kids and grow old.
I hurt that he hurts but I do understand the doctors concerns as does John.
SO...here comes my venting! Although Johns mom understands this and has made it clear to John for him to stay in NC and NOT come and that she understood his sitution.
End of story right? Nope! The pressure to still go to KS is given to him from his dad (divorced from his mom for 20 years) stating that he CAN come for 2-3 days and it shouldn't hurt him. I again explain what the drs have said and he just goes on about 2 days will be fine.
I guess what I'm saying is that I have learned that sometimes families come together and sometimes families show their true colors. I can't imagine ANY families best interest being for anyone OTHER then the one that has the greater risks. We sacrafice DAILY from the meals we eat (depends on what John can tolerate) Where we go (We don't get out as a family other then church because of Johns immune system being blown away) Our kids sacrafice their dad doing things he use to do (Riding Bikes, Playing Football/Basketball, playing video games, swimming etc...) My husband can't take my son out driving to practice for his liscense. Why? Because he can't drive himself! My son has faced the fact that his dad will not be at any of his Basketball games due to germs and the chance of him getting infection before remission. Our daughter had to stop dancing because of the cost. I had to become the breadwinner of the family (which is fine and I don't mind) and John....Well he has made the greatest sacrafice of all by not being able to work or function on a normal healthy daily level.
I think it is time for others to make sacrafices when it comes to the expectations of my husband. I don't care if I hurt anyones feelings any longer. I don't care if you don't like a decision I make, I could give a rats ass in hell if you don't like what I say to you. My ONLY concern is helping my husband get to a HEALTHY remission where all of the sacrafices can go away and he can live more of a normal life.
Is life fair? No. Is if fair that his mom is dying from Cancer? Absolutley not, she doesn't deserve that! But it's also not fair for my husband to risk his health or even as Dr. Falk stated possibly his life is pleasing someone elses expectations.
Life sucks at time...
One thing I have learned with John being sick with WG is that it can bring families close together OR futher apart. My family has rallied around us. Granted they are located in the same state/town as us, but still. My parents have taken over as parents for our two kids everytime John has been hospitalized. They have visited him while in the hospital 3 hours away and have helped in any way possible (even with gas/hotel room expenses....That we never asked for OR expected... Just wanted to make that clear)
The only family members I have called on a regular basis has been my parents. Main reason... THEY HAVE OUR KIDS. Everyone else I have texted. Reason 1- Texting is free from my cell and calling is not. Reason 2- I haven't felt like really talking to anyone, I tried that in the beginning and I was repeating everything 50 times a day (therefore I use facebook to update on Johns condition so all the friends/family can see it)
In a recent post I made reference to some of Johns family coming to visit and how I felt attacked by them. I guess it is easy to judge or criticize someone when you can fly into town for a couple of days and then go home to your normal life while I am a permemant fixture who deals with it hourly.
I feel that because they are not here to deal with it they lack the education on how serious this disease really is. I mean Yeah you can google all you want, but I think we ALL on this forum know that the internet is a pile of crock when it come to what really goes on with this disease (Other then from personal testimony like on this forum).
John actually ignores phone calls from one relative at times because he just doesn't want to deal with him. He will finally answer a day or two later because he has ignored several and feels that he needs to acknowledge him. Things that this person says to John is just down right rude and inconsiderate
Example: During one conversation he said to John "I gotta go to work tomorrow, I'm not lucky like you and get to stay home laying around all day". The sad part is, when John told me that, he did not seem surprised. In fact his exact reply to me when telling me about it (Because I was surprised) was "You act surprised that he would say something like that, I'm not" (sad huh?)
So now we go to the current situation. Johns mom has stage 4 ovarion cancer that has spread to many other organs/locations and hospice has been contacted. I know that IF it were my mom I would want to be there. When John found out how bad it had gotten (maybe a couple of weeks ago) I didn't give any opinions on what he should do. When he talked to me about the situation I made it clear that I would respect whatever the Doctors said about him traveling. Do I want him traveling 1200 miles away from the hospital and his doctors NO WAY but was I going to be the one to stop him ABSOLUTLEY NOT! When he went in to see Dr. Falk that week, he asked him about traveling. Dr. Falk explained to him that he understood that it was his mom, he understood that anyone would want to be with their loved one during that time. He also explained how he understood Johns pain BUT that his main goal was to keep John alive and the trip that far alone could put John back in the hospital (from exhaustion). But since it was "sick season" and infection could kill him. He told John that he could NOT travel away from the hospital and that he encouraged him to use SKYPE and phone calls to communicate with his mom for closure. He said that his moms situation was a very sad one, he knew it was hard but that with her situation her life would be shortened definitley. He then followed with his goal with John was to make his not follow the same path and for him to be here to finish raising our kids and grow old.
I hurt that he hurts but I do understand the doctors concerns as does John.
SO...here comes my venting! Although Johns mom understands this and has made it clear to John for him to stay in NC and NOT come and that she understood his sitution.
End of story right? Nope! The pressure to still go to KS is given to him from his dad (divorced from his mom for 20 years) stating that he CAN come for 2-3 days and it shouldn't hurt him. I again explain what the drs have said and he just goes on about 2 days will be fine.
I guess what I'm saying is that I have learned that sometimes families come together and sometimes families show their true colors. I can't imagine ANY families best interest being for anyone OTHER then the one that has the greater risks. We sacrafice DAILY from the meals we eat (depends on what John can tolerate) Where we go (We don't get out as a family other then church because of Johns immune system being blown away) Our kids sacrafice their dad doing things he use to do (Riding Bikes, Playing Football/Basketball, playing video games, swimming etc...) My husband can't take my son out driving to practice for his liscense. Why? Because he can't drive himself! My son has faced the fact that his dad will not be at any of his Basketball games due to germs and the chance of him getting infection before remission. Our daughter had to stop dancing because of the cost. I had to become the breadwinner of the family (which is fine and I don't mind) and John....Well he has made the greatest sacrafice of all by not being able to work or function on a normal healthy daily level.
I think it is time for others to make sacrafices when it comes to the expectations of my husband. I don't care if I hurt anyones feelings any longer. I don't care if you don't like a decision I make, I could give a rats ass in hell if you don't like what I say to you. My ONLY concern is helping my husband get to a HEALTHY remission where all of the sacrafices can go away and he can live more of a normal life.
Is life fair? No. Is if fair that his mom is dying from Cancer? Absolutley not, she doesn't deserve that! But it's also not fair for my husband to risk his health or even as Dr. Falk stated possibly his life is pleasing someone elses expectations.
Life sucks at time...