Monday, October 15, 2012

You don't know if you don't try.

I'm pleased to say that the girls reached a couple of milestones last month: Deirdre learned to ride a bike, and Bernadette is potty-trained. They're both doing quite well, and are thoroughly enjoying their new found "freedom".

We didn't intend to tackle either of these issues last month, as we certainly had enough on the docket already. But after Johnny popped the tire on Deirdre's balance bike (our pre-cursor to a big girl bike) when he was pumping it up, and because Bernadette had been going on the potty two and three times a day since August, it was just time.

I had my reservations, mind you. I thought Deirdre might be a little small to ride a big girl bike...and I wondered if I was ready for her to be so mobile. And although Bernie seemed ready, I was worried that if I pushed for potty-training too soon, she'd resist, and eventually revert. And I didn't want to jeopardize the progress she'd made on her own. But in both cases, I figured we wouldn't know until we tried. So we tried, and they succeeded. Thank goodness!

This concept of not knowing until I try seems to be a recurring theme in my life with lupus, too. I can think of several instances over the years when I've uttered those exact words - or someone's uttered them to me - in regard to my options for living well, despite lupus.

One of the first came when I was deciding whether or not to start Cellcept. Back then, I was worried about the known side effects, about postponing my plans to get pregnant (because the drug isn't safe for pregnancy), about starting a drug that, in my mind, was a big gun, and about whether or not it would even work for me. But in weighing the decision, I decided I wouldn't know any of the above, if I didn't try it. If I passed on the drug, it would always be a "What if...", and I already had enough of those in my life with lupus. So I tried it, and had great success. It was, in fact, a miracle drug for me, and served as a real turning point.  I'm so glad I took the plunge!

Another time I recall these words coming into play was when I contemplated a reduced work schedule at the office. I was incredibly reluctant to approach my company about working less. First, I had no idea if it would  have any impact on my quickly declining health or not. Second, I didn't know if a reduced work week was even allowed, given the management position I held, and I was nervous about losing my job, not to mention the insurance they provided. Third, I struggled with what it would mean for my career, my long-term goals, and my identity as a successful, driven young lady. Who I would be? What would I do if I couldn't work? Would I like it? I decided I'd never figure it out if I didn't try. So ask, I did. And accommodate, they did. You can read about my work history here, but long story short, asking to work one day from home was one of the best moves I've made in attempting to live well. It gave me the perspective I needed to separate myself from my working identity, and to once and for all, admit that less stress, less commute, and fewer hours were better from my health.

One of the last times I recall uttering these words was in regard to starting Plaquenil for the second time. I'd stopped the drug about three years earlier because I'd experienced that rare retinal issue with the drug. That was the primary reason I came off of it. But secondarily, my doctor and I agreed it was time to try something different, since the combination of Plaquenil, prednisone, anti-inflammatories, etc, etc. wasn't enough to keep my lupus under control. Thus, I started Cellcept, and you know the rest.

But after three years on Cellcept, I was ready for a new phase - a family phase, in fact.. My health was so good, I felt it was the right time to start trying for a baby. As always with lupus, I had some precautions to take and changes to consider, one of which was finding an alternative to Cellcept. My doctor recommended we try Plaquenil again, but I had reservations. Sure, my eyes had returned to normal, and my opthamologist felt it was safe to try, but my eyes weren't my only concern. The last thing I remember about being on plaquenil was that my disease was out of control. I'd worked so hard to get healthy  - the last thing I wanted to do was jeopardize that stability and ruin my chances of even trying to have a baby. What if I got sick? What if it meant I had to postpone pregnancy even longer? I decided I wouldn't ever know until I tried. And try I did, again, with great success. Five years and two babies later, plaquenil is still doing the job. And my eyes look great...at least, as of today. (I've learned not to get too cocky with lupus!)

4 comments:

  1. I just wrote this post:

    http://gettingclosertomyself.blogspot.com/2012/10/lupus-and-ra-deficit-and-finding.html

    And then read yours. So this really resonated with me. Any advice you have would be greatly appreciated!

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  2. Hi, I have had Lupus for the last 19 years and my husband and I are currently thinking about me getting pregnant. There are all the medication issues to think through, but also how are we going to look after a child if i do become pregnant. How did you and your husband manage, and did your husband have to take time off work to look after the children if you became sick?.

    Thanks
    Michelle

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  3. Michelle - I'm so sorry for my late response. Sometimes, these comments get lost in the shuffle! Child-rearing with lupus is definitely something that should be considered carefully, and I think it's great that you're already thinking through the process. My husband and I decided that hiring a babysitter would definitely help my chances of staying healthy, so we made it happen. It was expensive at times, tricky to manage, and difficult to find the right person, but it most certainly made it easier on me to get the sleep I needed! And yes - Johnny did (and does) have to take off work when I'm down and out, but I found that having consistent help really helped us manage things. If I felt sick one day, but knew that our babysitter was coming at 1pm...both Johnny and I could count on the fact that he could go back to work at 1pm, and I could rest easy knowing that our routine would go back to normal. Please feel free to email with any other questions - I'm happy to chat! sara@despitelupus.com

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  4. And Leslie - looking at your post right now. Stay tuned for comments!

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