Monday, August 31, 2009

Worried about seeing my father tomorrow

My father is in the hospital and is not doing well.  My sister sent me a text this evening and given the description, I knew that I needed to come.  Gess also decided to call and the first thing that he said after hanging up is "he's dying."  Gess was crying (I am still not sure why--he has probably seen my father 3 times ever).  Apparently my dad did ask for me to come, so I dropped what I was doing (which was making peach jam), and made the 3 hour trip.  Gess came with me (against my protests).

You'd think that going to the hospital would be nothing big for me now, specifically since we have practically lived at one this year, but I am worried about this.  For one, I only have bad memories associated with this hospital.  Basically, something "bad" happened with my mother here (and she doesn't know that I know about it) and so just being in the building triggers something with me.  Second, I haven't seen my dad in probably 7 years.  I have exchanged letters with him a bit, but haven't seen him face-t0-face since my last year of law school.  The reasoning behind this is pretty complex...or maybe not complex but difficult for me.  Long story short, my dad was not a great guy (abusive alcoholic) and left my mother (pregnant with three other children all under the age of 7) when I was 7.  I hardly ever saw him in the next 10 years.  I had assumed that he moved away, but found out that he in fact lived in the same little town that I lived in.  He just never cared to see us.  So, that hasn't sat well with me.  

He came back around just as I was graduating from high school and I had a semi-relationship with him during college (mostly at the urging of Gessner).  But he really just made excuses about what he had done, etc.).  So, finally I had enough and just stopped responding to his letters (letters have been our main form of communication).

About a year and a half ago, I wrote him again, worried that he would get sick and then I would regret not trying harder.  So, we again exchanged letters.  He seemed better this time.  I also found out that he was sick...diagnosed with COPD (which is no surprise since he has smoked since he was like 10).  There was an issue that came up because I didn't feel comfortable going to a family reunion with him, so I pretty much stopped communicating with him again.  I was too overwhelmed with what was going on with Gess and some other stuff and at the advice of my doctor and therapist, I really needed to cut out people that were "energy drainers" etc.  He was definitely on that list, so I really haven't had much contact with his for the past year of so.  

Today there was no question that I needed to come to see him even with all of this.  I am not sure why, but my gut told me  I needed to, so I followed.  I am a bit worried about the toll this is going to take on me.  My dad is old.  He will be 69 in just a few days.  He smokes and also drank for many years.  I am sure that his liver is bad, as well as his lungs (which rubs me the wrong way considering Gess's health at the age of 32 not because of stupid lifestyle choices, but because of CF...but that's for another day).  

He has a wife that I think I met once.  And a daughter that he adopted (which is a very touchy spot with me since he abandoned us and yet voluntarily took on someone else) and I imagine she might be there.  I haven't been around and I don't know if that was the right choice...it certain seemed like the right choice and I don't know where I will fit in tomorrow.  

I don't know exactly what is going on, though the explanation given by both my sister (to me) and my dad (to Gess) sounds like it could be a terminal situation.  

Not sure what tomorrow will bring, but I am going to try to keep my wits about me and just be there if he needs me (regardless of the past and all of those issues that cannot be changed).  At the same time, I will not accept anyone attempting to place blame or guilt on me for the past (not that I expect that to happen, but if it does, I will stand up for myself).  And above all, I have to try to keep myself from getting "sucked" into any drama that is just going to be stress causing.

For now, Ambien take me away....

Wednesday, August 26, 2009

Babies

Man, I feel like I am beating the proverbial dead horse, but I want to have kids. I am not sure why this is hitting me so much right now. It might be because I have been around kids a bit lately (I even had a 6 year old explain to me how to have kids!), but it also might be my birthday coming up (I will be 32 *gasp* in a couple of weeks).

I am planning to talk to Gess again about the issue, but those talks are always so emotionally draining (for both of us). He says that he wants kids, but feels like it would be irresponsible because of his CF. I do understand the argument and can agree with it on an intellectual level sometimes. But there is a part of me--a huge part of me--that just cannot accept that I "can't" have kids. I might feel differently if I were the one with CF. But I'm not, so here I am, wondering what to do. It seems so ironic that I have done everything "right" in terms of what society says you are "supposed" to do for starting a family: I went to college and graduated, and then married a great man that I love, and then went to law school and worked on my career so that I can have a good job and financially care for a family, waited until I was older and more mature, etc., etc., But here I am, only 32 and the possibility isn't looking good. I feel like an adolescent that just wants to stomp her feet and scream "It's not fair!" at the top of my lungs.

I wish there was a way that Gess and I could be on the same page about this, but really I don't think that it will happen. And that really hurts. I sometimes envision myself as a young-ish widow, all alone with no kids and no family (since my family is not supportive). That seems like such a bleak and lonely future.

I know that there isn't an answer. I also know that a lot of people have strong feelings about the whole CF-kids issue. So, I am not wanting to start any sort of debate. Just trying to get out my feelings, so hopefully I can move on to an "I'm okay" phase.

Saturday, August 22, 2009

Physical Limitations

When I met Gess he was very active.  Really I think that he was so determined to not let CF define who he is, that he pushed himself a lot to be active.  He did martial arts as a kid and he still does demonstrations (which unfortunately ends up with broken hands sometimes).  We used to hike a lot and do a lot.  And I love to be active.  I have a long list of things that I want to do and a lot of them involve pretty intense physical activity.  

So...here is the dilemma--Gess has not been "up" for doing much physical activity right now.  I totally understand--he has been so sick and the bleeding, etc.  But I don't know how to deal with this on a day-to-day basis.  For now I have just been casually mentioning things and seeing how he responds.  Like a group of friends was going on a pretty easy 4-mile hike today and so I mentioned it and he said that he would like to go.  So last night I asked if he thought that he would still want to go and he said that he had bled that night, so he wasn't sure.  So...we didn't go.  It is fine that we didn't, I'm not complaining about that.  I am just not sure how we should deal with this on an ongoing basis.  We are supposed to go kayaking next weekend.  Gess set it up with a friend of his...but given his health and the recent track record, I don't know if we will be going or not. 

I guess what I really need to do is just have a talk with Gessner about this.  It will not be a fun conversation....but it is something that we need to do.  We just need to have a discussion about where he is and what he feels capable of doing.  Going on as if everything is the same as it used to be is not doing either of any favors.  It probably makes him feel badly when he has to cancel because he isn't up for it and it makes me frustrated that we are canceling plans, etc.  

I also don't know where is leaves me. I am an active person and want to continue to be.  If my shins ever get better I will be training for triathlons again.  But is this going to hurt Gess?  Is he going to feel like I am leaving him behind?  

Wednesday, August 19, 2009

Been a very bad blogger...

There hasn't been a lot going on lately.  Gess seems to be feeling okay.  He has had some bleeding, but nothing major.  No more sudafed or demoral, so no more loopy days.  I am struggling to write anything else about his health.  I guess it is because I am really tired of CF.  I have to deal with it (obviously), but I don't have to write about it :)  It is hard having a husband with CF and sometimes it is just exhausting. 

Thursday, August 6, 2009

Vancouver and Chicago

I posted the details and photos from my trips on my other Blog.

Family Blues

I am so frustrated with family right now. Our society values family and commitment to family so much. So when you feel like breaking from that expectation, it feels like you are committing some cardinal sin. My family has been a continual source of stress and drama for me. I recently told my sister that I had to limit my contact with her and step back. This was really difficult to do, but was on the advice of my doctor and therapist. Basically I need to try to minimize the amount of interaction I have with those people that are "energy suckers." I am trying to recover from all of the stress. My body is telling me that if I don't do it now, something very bad is going to happen. Even knowing this, it is so hard to do. I can't even explain the knot in my stomach when I told my sister that I had to limit my contact. The other thing the really irks me is that my sister told me not to long ago that she knows how "easily" I get stressed out. WTF!! It's not like I am stressing over a a chipped nail! My life is full of big, stressful things. It pisses me off that my family would view me as just "easily stressed," particularly when I feel like I have done pretty well in the face of everything. I mean, maybe I am giving myself too much credit, but I think that I have done a pretty good job of keeping my sanity in the face of a lot of crap.

I have my niece with me this week (my sister's daughter), so the family situation has come up. I feel so badly for her. My sister is a mess (and I am not exaggerating) and I really worry about my niece. My sister's husband is a total loser. She recently left him after he hit her and my niece, but she is now back with him, insisting that he has changed. I seriously doubt it. I just hope that she can keep up in school and get the heck out of there as soon as she turns 18. Ughh...

On top of this, we are having major issues with Gess's family right now--particularly with his mother, which is just making things difficult. Why she needs to make an issue right now when Gess has been so sick, I don't know. Basically, over the years his mother has said many, many inappropriate things and has just not dealt with Gess very well at all. He has been pretty tolerant and forgiving, chalking it up to her just being out of touch or something. I had enough of it after the last comment that she made to me about being glad that we deal with the CF so that she can have her own life. Gess talked to her about it and she got mad at him. Seriously! Then things have just went downhill from there.

Apparently while I was out of town, Gess talked to his mom and these issues came up and he had a long, difficult talk with her. Basically he told her how the things that she did when he was a kid were so hurtful (like when he had to take care of all of his own medical stuff and she appeared like she didn't "care" about him being sick--his words). Gess was hopefully that it would move toward a better relationship, but it seems like it has done the opposite. Apparently he invited her to "talk" to him about the stuff via letters and she has done so; we get something in the mail from her almost every day. He kept them all and didn't open them at first. Instead, he brought them to his therapist's office to read them there, as a "safe" place. He didn't tell me much about what was in them, except that they were what he expected, and not in a good way. Also, in one she made a statement that "Lisa settled for you, even knowing you have CF." I cannot wrap my head around that statement. I can't think of any possible scenario in which a mother would tell her child that someone else "settled" by being with him. And I just can't imagine how that would feel.

As much as I am troubled by my own mother, there is still a part of me that wants acceptance and love from her. So, to have your mother make such a derogatory statement, in such a clear and direct manner must be devastating. It breaks my heart that he has to be dealing with this on top of everything else. I think that it shows amazing strength and character for him to try to communicate with her and I am so saddened that she responds like this. I really don't know what her issue is, but I just want to scream, and tell her to stop being so selfish and be a mother to her son. I know that she has went through a difficult time; I can't imagine what it would be like to have a son diagnosed with a disease such as CF. It would be utterly devastating and incredibly difficult. So a lot of leeway has to be given on how a person deals with that sort of thing; but that can't excuse this type of behavior and mindset. And really, what it is doing is ruining any chance that she has of a relationship with him. I really wish for his sake that this wasn't going on. I see how much it hurts him and how difficult it is. It makes me so angry that his emotional energy is being spent on this, instead of on getting healthy and fighting CF. I wish that she could see how her attitude affects him (and me) and how damaging it is. We deal with the CF alone, not because we choose to, but because that is the only choice. She isn't available or able to help deal with it, and from his perspective, she wasn't able/available long before I came into the picture. I wish that we had more help in handling this. It is exhausting and incredibly difficult to do on our own. And as it is now, involving "family" at these times seems more like an additional stressor than help. (There are some exceptions, this doesn't not apply to all of the family--for example, his Dad has been great in helping. He has been to the hospital with Gess many times and I know that he will always back me up in dealing with the doctors or even in talking with Gess when things are difficult, etc.).

I wish that it were easier to turn away from family. The concept of family is great. I love the idea of having a group of people that are there for you no matter what and who love you unconditionally. People that you call if something happens, and you know will be there. People that support you and carry you if you need it. I would love to have that sort of family. In generally that would be so great, but especially in dealing with a disease like CF. Unfortunately, with a few exceptions, that has not been the case for us and I hate to see the toll that is taking on Gess. Which of course makes me want to stand up and fight for him even more. I want to protect him from this hurt, but I can't. I wish that he could focus on his health and have more support. Also, I wish that I had his family as support. My family is completely worthless when it comes to any of this, so I wish that I had them as backup. I wish that I could talk to them about what is going on and have them a part of our life. I really just wish that I had a "family."