Just a means of Venting!

[Stephanie78]

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...

[delorisdoe]

wow...John is lucky to have you.

There are people out there that are jealous of someone who is too sick to work and that will never understand how someone to sick to work prays for the day they can work.

His fathers reaction to him not traveling to see his mother is insensitive. It also reflects a common theme. People understand and get cancer. All other illnesses pale in comparison. When people ask me about my period and I tell them I have not had one for 8 years due to chemo their eyes pop out of their heads and they want to know what cancer I had. When I explain that it is not cancer their reply is always "oh thats good" followed by "lucky you no period". I am not jealous of cancer patients at all but my point is people dont get auto immune diseases, mental health diseases etc. Cancer, everyone is terrified of and for the most part people "get" cancer,

Your strength in dealing with your husbands battle is commendable and you are so strong. He is lucky

[Sangye]

Gosh, I'm so sorry you guys have family stuff to deal with on top of everything. It's terrible.

I've learned that family is where you find it and that for me, it has generally not been through blood relatives. I've also learned that instead of trying to convince someone with an obviously closed mind, I just tell them in a matter-of-fact way, "You'll believe what you want to believe. It isn't my job to convince you. It's my job to take care of myself and meet my own needs." Works every time.

[Trudy]

Stephanie.....I so understand. I was too ill to travel to my brother's funeral and everyone was angry. I decided not getting sicker for my husband and kids was most important.

The other issue....I am sure John would love to be back working right now! My husband was injured at work and home for three very long painful years. He finally got to return and 3 weeks later severely broke his angle. He will be off for 6 more months. I know the anguish and frustration it causes him. I am amazed at how well you have dealt with your situation.

Venting is good! We are all here for you.

[Psyborg]

Sorry about John's family causing waves for you Stephanie. I think, at least based on how it sounds, that they don't get Wegener's. If cancer does have one advantage it is that it's universally feared, and as such is better understood by people. You could even say that in regards to doctors as well really. I don't think he's made the wrong choice. And honestly if his dad left his mom 20 years ago I don't see how it's any of his business at all. If his mom understands (and mom's are generally better about that probably) then I'd say he should just stay in contact with her and blow the rest of the family off. I imagine that is a very hard decision for John.

[Stephanie78]

Thanks everyone! I wouldn't say that I have "dealt" with it in a perfect way, but It is what it is. I have an amazing support system with my family and our friends here in NC. Our kids are amazing! They both help out so much around the house. And they both have made sacrafices and don't seem fair to me but they have handled it so much better then I think most kids would.

So here is todays dilema (really funny of today). John has been on Colace for 3 months. Due to the meds it causes him to get a little constipated (ok that is not the funny part...) So when he went in the hospital on Thursday night, they would not give him the colace. Friday, they would not give him the Colace. Saturday they would not give him the Colace. So on Sunday they made reference to him not having a BM since Thursday morning and that they were ordering the Merilax. I told them he needed the Colace and they said that it was not a laxative but a stool softener and would not work (Drs do know a lot, but a person knows more about their body sometimes then a dr does) John said he really just wanted Colace. So they give him Colace Sunday morning (Bright and Early) He had a BM before I left on Sunday (around 12). They then gave him a laxative Sunday night.
Now everytime he has had upset stomach in the hospital they treat him like he has a disease that is contagious and like he flings his poo at people so they have to wear gloves, gowns and masks. Also it has caused him to stay in the hospital longer (Even though they would have given him a laxative!)
I called him a few minutes ago and he said "I had upset stomach, should I say anything". My reply "Do you want to stay another 2-3 days?" his reply "Yep, I'm not telling them". I feel so......Sneaky! And all because of loose poop!

[elephant]

Stepanie, you got to do what is best for you and John. His health is number one, you guys have your heads screwed on right! Your children need you both, and John will get better in time. Poops and Pees are a big deal in the hospital. I always had to document that every shift. How much did they pee (ml,cc), then came the amount of poop, the color of the poop, was it muschie or firm? Did I gross you out yet?

[Stephanie78]

My dear, I have two kids....poop is a conversation topic in our home (that or gas). It takes so much more to gross me out ;-)

[pberggren1]

I regularly talk about poop, pee, chucks from nose and throat, blood.

Steph, you can always come on here and vent.

[delorisdoe]

when my husband was released from the hospital for a broken leg that required 3 surgeries over 2 years and kept him layed up for most of that time colace became his best friend.