Wednesday, August 20, 2008

Confession: Baby Blues

I am having one of those "I-want-a-baby-so-bad-I-could-scream" phases right now. I go through more often than I would like, but it does seem like it has been awhile since the last one. I have been enjoying that good things about not being a mom--the quiet, the freedom, etc. But I feel like I am being bombarded with pregnant women and it is getting to me. It is so strange to me how strong these urges can be. I mean, I can intellectually think about the issue and say "Having kids doesn't make sense" or "Look at all the things you can do because you don't have kids" or whatever, but a pregnant woman can walk past me and I nearly burst into tears. It has to be biology. There is just no way around it! My would I want to be pregnant and have all that extra responsibility? It HAS to be biology. But knowing that doesn't make these times any easier. On days like these I feel like I am "broken" because I am not a mother--that there is something wrong with me and I am less than a "full" woman because of it. Again, the mind knows that this is completely not true...but the thoughts still creep in.

Now, please do not comment and say "If it is meant to be it will happen" or "You could always adopt" or something like that. I am not looking for a solution to a "problem" just trying to say what I am feeling out loud in hopes that it helps the phase pass. I know that there are other options and I know that IVF is an option too. We just don't know that we want to have a child (biologically or otherwise) with Gess having CF. It is just really hard to think of bringing a child into that situation. But on the other hand, it hard for me to accept that it will never be.

Thursday, August 7, 2008

the witness

Everyone that is affected by CF witnesses so much suffering. There are so many people with CF suffering right now and it breaks my heart. I know that there will never been anything that anyone can say to make the suffering go away or make it make sense. My heart is heavy, but I can't find the words...

Wednesday, August 6, 2008

Self-Preservation or....

being a bitch. Not entirely sure, but I am calling it self-preservation!

Despite my briefly feeling better yesterday, I am a complete and utter mess! This last round of stuff just really threw me for a loop and I find myself falling back into my old ways of setting ridiculously high standards for myself, which I of course cannot meet. I am not sure where these ideas that I have come from, but basically I get this notion of what a "good wife," or "good attorney," or "good person" means, and then everything that I do falls miserably short of that. For example, in my deranged mind, as a good wife, I should happily attend to my husband's ever need, want, and whim while he is sick without being tired or frustrated or whatever. Also, I should be able to go to the gym religiously, have a spotless house, put in extra hours at the office, take care of all of my crazy family members, take care of my husband and dog, and then still manage to devote adequate time to the things I like to do. Of course, this does not happen and because of it, I have been feeling like an incredible failure lately. I hear myself saying "I hate you" to myself over and over, which is obviously not that fun.

I think that I hit bottom today and just basically felt like a big, fat, ugly, horrible, bad, mess of a person. Thankfully I had a therapy appointment and was able to get a good reality check and reminder that I am being incredibly harsh with myself. She also encouraged me to really try to take care of myself...which brings me to the actual purpose of this entry:

My mother-in-law, sister-in-law, and niece are coming to visit from out of town this weekend. I was sort of looking forward to it since my sister-in-law and I have really repaired our relationship, but then all of this stuff hit me, so I am really tired and just not wanting to deal with people. One of Gess's cousins lives locally with his family so we are all supposed to get together. Gess and I decided that because of everything that is going on, we would prefer to keep the visit semi-short (the last thing that we want to do is to feel stuck for hours--especially since they have a tendency to talk about religious stuff and we just don't want to go there right now), so we suggested meeting at a kid-friendly restaurant for dinner (did I mention that the cousin has 2 kids that are not that well-behaved?). In response the cousin suggested an alternative of going to their house, but said that the restaurant idea was okay. So, I said that we wanted to meet at the restaurant and set the time, etc. Then yesterday I get the email saying, "No we will just have you guys over to dinner at our place" and then gave the reason of wanting the SIL to see something at the house, etc. Well, that made me a bit upset and I really didn't want to go and neither does (and here is the self-preservation or bitchy part), I responded back today that Gess and I wouldn't be up for that but that we would make sure that the visiting family gets there!

I think that I am still a bit in shock that I did that since I am usually so willing to bend over backwards to make other people comfortable and totally putting everyone else's desires before my own. But, I really think that it would be stressful for us to go, so I think that it is the best thing. So there, family deal with it!

Tuesday, August 5, 2008

Breaking Out

I feel like I am coming out of my shell a bit today.  When something like a hospitalization happens, I draw into myself.  Part of it if self-preservation.  I am like the cartoon turtle that springs into his shell when danger comes near.  When Gess is sick, I do what I need to do to get through that situation.  And I find that when I do that I tend to isolate myself.  I really thought about it this week and with some other posts that I wrote, and some of the isolation related to CF is self-imposed.  I think that part of it is because if I see people, I have to explain what is going on and what is happening and how I am doing, etc.  The simple fact of the matter is that sometimes I do not want to think about it.  If I am not standing in the hospital room, I don't want to think about it.  I want to zone out--and act of self-preservation--and that means pulling away from friends.  

Today was the first day that I felt like "I" was back again--if only for a bit.  A friend saw me and said that I was "perky."  The mood didn't last the entire day, but I definitely felt better. It is a process...a journey.  One step.  One moment.

Monday, August 4, 2008

The Voices Inside My Head

The voices inside my head just won't stop today. I am a thinker--and no, I am not full of myself or calling myself an intellectual or anything pompous, I am just pointing out that I devote a lot of energy to thinking about things--and often over thinking things. I will get something in my head, and then every time my mind can break away from the what it is supposed to be doing (mostly likely work), it will race right back to that subject. I play out scenarios, analyze every minute detail, and stew over things. In sum, I am neurotic.

Anyway, today has been particularly bad. There is nothing specific that is eating away at me. I just keep thinking about things. I feel like all my thoughts are internally focused and I find myself just "inside" a lot. It is annoying because I do have work to do. Also, none of my usual "tricks" are working today. I turned on the music. I shut my office door. I turned on the music and shut my office door. I smelled my essential oils. I took a walk and got a little bit of sunshine. I wrote out a short to do list and crossed everyone on it off. I wrote in my other blog. Still, I can't seem to keep from getting drawn back in to myself. It is like daydreaming, but not. It is like I am writing a memoir in my head. I recall things that happened and I tell them to myself in prose form. I am writing a book in my silly head.

Today it is not CF focused, which is actually a nice break. All of the hospital visits over the past weeks and also starting some fundraising, etc., has really kept CF at the forefront of my mind. But it is exhausting and it is nice to have a break, even if unintentional and if it is caused by my idiosyncrasies (let's just say I am "quirky" that sounds better than "clinically insane).

Sunday, August 3, 2008

A breakdown

Thursday night I had a breakdown.  Thursday itself was stressful--running around to work, get Gess after discharge, pick up Beauty, etc.  I was exhausted, but couldn't go to sleep.  As soon as I put my head on the pillow, my mind would start to race. All I could think about was everything that I needed to get done.  I got up and did the things that you are supposed to do to combat that type of insomnia--do a few things, make a list, meditate, take a warm bath...but nothing worked.  Finally around 1 am I tried to go back to bed, but soon after laying down, I started to cry.  And not the little tiny tears---but the big, sobbing ones where your whole body shakes.  All I could think about is how Gessner is sick and how he has only been really "well" for about 2 weeks during the entire year.  It was a completely selfish moment--where I wonder if I can actually handle this day after day after day.  And then my thoughts quickly went to the fact that I need to make more money.  Because if I made more money, then Gessner could quit his job and just focus on his health.  Of course, he says that he has no desire to quit and I actually think that it will be really hard for him when he hits that place.  But on the other hand....if he wasn't working, could his health improve?  I put so much pressure on him to do things--I schedule dates with our friends, or get tickets to the opera, or like right now, I am decorating the house and trying to get it done before his family gets here next weekend.

So...I feel like a complete failure.  I cannot do my job well enough.  I cannot be a good enough wife.  I cannot even keep my house in order or get myself to the gym, or to lose weight.  I cannot do an of the things that I need to do.

These thoughts causes a lot of sobbing, even wailing.  Gess wanted to know what was going on, but I knew that the thoughts there were inside my head would not be good thoughts for him to here.  Finally I blurted out "You're sick!  Your lung functions are 43 percent.  You are sick every day and it isn't going to get any better."  It all just came out.  Those are my fears.  My fears that 43 is now the new baseline and wondering when the slide will start.  I don't know how I will deal with it when it comes.  Will I be capable of giving him what he needs?  Right now I feel woefully inadequately in all aspects of my life and my care of him.  I put too high of expectations on him and push him.  Why can't I push him to do less?  Why? 

And there are days when I can't stop thinking about the "when" and the "after."  It will come.  Come before it should.  My life will end as his does.  But I will be expected to carry on.  But how one does that is so unclear.  My whole life for the past 10 years has been intricately entwined with his.  We are a pair.  That is not to say that we aren't our own people as well....but we are a pair.  When are a couple and we have couple friends.  So when that day comes I will no longer be a couple and the dynamic with them will drastically change.  They will invite me because they don't want me to be alone.  But it won't work.  I will be lopsided, or missing a apart.

These thoughts engulfed me and I couldn't stop crying until I vomited.   Even then, I continued to cry....finally collapsing when I could not feel anymore.

Friday, August 1, 2008

Letter to moderator

I have found myself increasingly frustrated with the situation on the board and then I get angry that I am so upset about the situation. Something in me wants to scream! So, I wrote a letter. I am hesitant to post it. I don't know if I should. I don't know if I should send it to her. I don't know if I should just keep my mouth shut and move on. But there is something therapeutic about publishing your thoughts. It is like giving yourself a voice. So, for at least now, I might try to speak.

Dear Moderator,

I joined the forums at about a year ago. Although I have been an active participant since that time and have followed the "rules" of the site, my access has been terminated and my blog has been deleted, all without explanation. I tried to give you the benefit of the doubt and sent numerous emails requesting an explanation and allowing you to fix the error. But I have received no answer. Banning me from the site was without justification and is contrary to the stated mission of the forum, which is to provide support for those affected by CF.

Perhaps this was simply a business decision. You decided that for whatever reason some members of the forum were no longer welcome and that it would not hurt your business to simply delete their content and deny them access to the site. You may think that we will just go away and that new people will happen upon the site, taking our places and that your sponsors will not notice.

The truth is, however, that your decision to ban people from the site has personally affected people. People went to that site for support. CF is a difficult and very isolating disease. The forum was a great place for persons with CF and their families to share information and get support, when that is so hard to do in the "real world." Perhaps you cannot appreciate that as you are not affected by CF. Or maybe you just don't care about the people that your site is allegedly designed to support. I still cannot understand how the people that you have banned could have negatively affected your business--they were the top contributors and visitors to your site. The banned members were active in chat, and often the only members there. Look at the posts and the blogs--a lot of the information and support is provided by those people you ousted. So, even on a business level, your actions do not make sense.

I did not see the original posts that are rumored to have caused the bannings. But I saw posts that apparently caused bannings of subsequent members--including myself--and there was nothing offensive or inappropriate about them. Perhaps even more disturbing is the complete lack of explanation for your actions. Accounts and blogs were simply deleted. Emails are left unanswered. No rationale or justification is given. I suppose you hope that we will just all go away quietly, or sign up under a different alias, or beg you to restore our access. I suppose you see us as usernames that can easily be deleted and that a replacement will come along soon. But there are people behind those usersnames. People that are already dealing with a difficult disease and now are spending energy dealing with being ousted from a source of support.

I don't care that I am not part of your site any longer. In fact, this situation has proven to me exactly why no one should be a part of your site. But what bothers me is that you advertise your site as a place of support and refuge for people, but in reality it is simply a tool for marketing--a commercial enterprise. You clearly do not care about the members of the site, yet attempt to paint yourself as doing so. There is nothing wrong with being a business, it is your job and part of that job is controlling content on your site. But you have crossed the line. Your actions have hurt people and those actions appear to be deliberate and without any sort of justification or even discernible rationale. As a business that might not matter, but as a person you should be deeply ashamed.