It has been a long time since I wrote on this blog, which some of you may have noticed (although probably not, I don’t kid myself that you are breathlessly awaiting the next installment of my life story!)
There are a couple of reasons I haven’t written. First of all, I majorly overestimated my time management skills and overcommitted. Like a lot. As in I decided it was totally doable to be a stay-at-home mom to twin 3 year olds, run a growing non-profit, write a blog, be on several boards and committees for other organizations, and manage my insane list of doctors appointments and health conditions.
I think that part of the issue was that I felt like my life was on pause for so long, that once I started to feel a little better I cannon-balled into a million activities rather than inching in and doing just a little to see how it went. And maybe that wasn’t the best idea.
And if I am being truthful, which is what I strive to be in this blog, in a lot of ways it was easier to fill my time with tasks I had to do, rather than to turn the focus inward and deal with my own crap- sometimes literally.
My recovery has not been what I hoped for. It is taking a really long time for me to get to whatever my “new normal” will be. I am coming to terms with the fact that I’m missing a bunch of organs, and that means life will never look the same as it does for other people. I am living with the fact that I had cancer and there is no guarantee it won’t come back. I am learning how to keep from yelling at doctors who tell me frustrating and semi-absurd things like I either have some amount of internal bleeding (which they can’t do anything to fix,) or a bone marrow problem (for which the treatment is worse than the problem so they won’t even test me for it,) that is causing me to be chronically anemic and get IV iron every month- probably forever.
And worst of all, I have had this “mystery pain” going on that I can’t trace to anything I eat or do. For a long time, I was always living with the uncertainty that at any moment I could be feeling perfectly fine and then suddenly be wracked with extreme abdominal pain that could last for hours and make it impossible to continue my day. Sometimes I could fight through it, and other times I had to lie on the floor of the bathroom crying and call my mom to come get my kids because I was physically unable to put them into the car and get them home.
I have also been dealing with a lot emotionally. I have discovered that my battle with depression and anxiety is directly tied to the amount of medical issues that I am having. So this summer, when I went through three weeks of extremely invasive and, in one instance, legitimately torturous testing to determine the cause of my mystery pain, I became, well, a big hot mess. It was hard for me to find joy even in the great moments I had with my family. I was just boxing up those yucky, unclear, unpleasant thoughts and feelings and sticking them in a closet to deal with later. I have gotten pretty good at that particular defense mechanism over the years, but at some point that closet can’t fit one more thing and when you open the door it all comes pouring out.
I spent a lot of time the past few months in therapy discussing the fact that part of my brain is always alert for the next thing that is going to go horribly wrong with my body. It’s exhausting. My mom once said to me that it seemed like I was always waiting for the other shoe to drop. Yes. Exactly. Why wouldn’t I expect that, because in the last four years of my life, it always has. Every time I would just barely recover from a major blow, there would be something else to come along and knock me back down.
Boom. Miscarriage. Feeling hopeful because of a healthy twin pregnancy then Boom. Emergency hysterectomy when the twins were 6 weeks old. Start to come to terms with the fact that I almost died and had my uterus yanked out without my permission and then Boom. Find out that all the medicines I have been taking have caused me Osteoporosis, and then come very close to fracturing my spine. Boom. My ulcerative colitis flares so bad I have to have my colon removed. Boom. I have Thyroid Cancer. Boom. Three major surgeries in four months. Begin to slightly feel better and then Boom. Anemia so severe I could barely move and we were considering another blood transfusion.
It just kept coming, I mean how many effing shoes are there?! So when the doctors found a giant gallstone during all of those tests I almost felt relief. I thought, well here it is, the Boom that I can almost count on. One more surgery.
But then they decided that the gallstone was not the cause of my pain and surgery to remove it would be too dangerous with all of my scar tissue. That wasn’t so much of a Boom as a sigh…
So I go to my GI again, and try upping the dose of the medicine he gave me last time that is maybe kind of helping. Truthfully I am not really expecting it to work.
And then a miracle happens…my pain is gone. I realized one day recently that it has been almost three weeks since a major pain attack- I was having them 2-3 times a week. And then I start to feel like I have a little more space, more patience, more light. That’s when it hits me, not with a Boom but with a HAZAA! My background pain is gone too!
See, I didn’t really even count my everyday gut pain amongst my list of things to worry about because it had moved to the back of my brain. The chronic cramping and steady pain was just a hum running through my life that I could manage, it was the acute bouts of pain that I couldn’t live with.
But once it was gone, I realized how freeing it is to be without pain. How much space that pain took up in my head and my heart. How much anxiety and depression and hopelessness that pain caused.
The reason I haven’t written in so long is because I couldn’t. I didn’t want to share my feelings with the world because they weren’t good enough. Because I wasn’t good enough. Because my writing rang false every time I tried. Depression will do that. And some of you reading this who have suffered with depression might understand, all the rational thought in the world couldn’t overcome the ugly, nagging voice that was whispering quietly that I was destined to be sick forever, that I should just get over myself because so many people have it worse, that I had nothing of value to say.
But when my pain eased, and I got on the right combination of medicines to manage my pain, depression, and anxiety, that gloom started to lift. Yet again Xanax for the win!!
I’ll never forget the first time I realized that my hope was back. I was on the floor rolling around with my twins playing some sort of ridiculous game and the three of us were all laughing hysterically. And I looked at the two of them and my husband who was sitting across the room chuckling at our antics, and I felt like my heart would explode. I was hit with an overflow of gratitude for my life, for my ability to be present with my family in body and in spirit. It was a fleeting but absolutely perfect moment.
And with that moment, I started to find myself again…I started to get some of my sparkle back.