CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.
Today's diary is by Katie71.
Disclaimer: The diary below has some opinions about marriage and having kids, and even though it might seem like I’m presenting my ideas as facts, they are merely my stupid opinions and reflect how my husband and I tend to think. I do believe we’ve made and will continue to make the best decisions for us as a couple and as individuals, but I in no way think those are the best decisions for anyone else.
I’ve been sick for awhile. My disease and sometimes the treatment, has cost me a lot, my career, what little self esteem I had, some of my hobbies, some friends, not to mention the money it has cost me. Nevertheless, I coped and moved on. But now the latest cost has pushed me too far, now I’m angry.
My husband and I just celebrated our 14th anniversary and I can honestly say that I love him more every single day. We don’t have kids; we wanted to wait until the time was right. We had all the usual reasons to wait: we wanted to be financially stable, we wanted our careers to be on track, we wanted to make sure we knew where we wanted to live, I wanted to lose a little weight first, etc, etc. So we waited.
Neither of us felt like we need to have a family to feel complete, but we always felt like we would eventually have kids. We sometimes had doubts about whether we should have biological children because my husband’s family has a wicked history of colon cancer and my side of the family, while physically healthy has a lot of mental/addiction issues that may or may not be genetic. Then after I got sick, I looked at the information about the medications I’m on and I quickly came to the realization that despite the science that says my treatments are most likely safe to use while pregnant, I was not comfortable taking the risk.
That’s okay, we can adopt, after all, neither of us have a driving biological need to reproduce. Given all the options with adoption, the one that most suits us is adopting through the state, in fact, it was the only option we were comfortable with at all. So we start the process, which is time consuming and invasive. Some of the rules are just ridiculous, but we just comply albeit grumpily. The current item on the list is the observation hours, which is really just spending time with kids already in the foster system, while our adoption overlords watch us.
Before I continue, I have to talk about my meds. I’ve been on Enbrel or Humira for some time now. I know that they suppress the immune system and I’m more careful with germs than before, but not obsessively so. I never really got sick more than I used to, so my countermeasures are working. This disease isn’t going to control me, dammit! I also have to confess that my family has an incredible record of health, with very few sicknesses or cancers, I even have a cousin who was diagnosed HIV+ back when it was still a death sentence and he’s still doing great, so I have been operating from a position of great hubris when it came to my physical vulnerability despite the meds.
So, back to the observation hours, we’re required to do 40 hours by the agency, and less than 10 hours in, I’m getting the sniffles. We nearly get to 20 hours and it’s a full blown nasty cold. That’s okay, I can deal with this, I take to my bed for two days then I’ll be all better. Two days has turned into two weeks. This is a terrible cold, I can’t breathe, my throat hurts, and my ribs hurt from coughing. I finally see the doctor, actually the PA, who I can’t stand, that’s how sick I was, and I get steroids and antibiotics and I think I’m getting better. But it turns out that I’m not. My sniffles have turned into a three week cold and it’s still going.
I can’t bring a child into our home if I’m going to get every cold that goes through the school. I couldn’t be the Mom I want to be and it really wouldn’t be fair to put my husband in the position of taking care of me and the kid and bring in the only income. How do I know if I’m going to keep getting sick? I really don’t, but I’m not the kind of the person who can just roll the dice on something so important.
So now I’m angry at my disease. It’s not that I might not raise a family, but rather that my disease gets to make the decision for me. What makes you angry about your disease?