This diagnosis has thrown me for a loop, rather unexpectedly. You'd think that after over a year of daily pain, almost all the time, I'd be relieved to have a treatment plan in place and hope to stop the process of this disease.
But I find myslef, at the same time relieved that the diagnosis phase of it is finally over, while also totally freaked out and terrified of having yet another very rare disease (strikes 2 people per million population). PVNS is characterized by being a benign tumor, but which is very aggressive in nature. It destroys the cartilage and eventually the bone in the joint! This is my hip here... a central part of walking upright.
I found myself crying about this yesterday, and I realized it was fear. I am so scared of surgery, and of PAIN. And of infection. In that area of the thigh/hip, where everything is delicate and traumatized already, I am just so scared. And upset about this whole thing. It was so hard when I came home from the hospital in 2007 (*exactly* two days ago, it was two years) and I was stuck not being able to walk, or do anything with the house or the kids. I was a wreck, as many of you know and remember well. I am so scared of that scenario repeating itself. This time is different, I know; it is a planned surgery, not emergency, and I have a live-in nanny now- a huge difference from being totally caught off-guard and the whole family traumatized last time. But I am scared. I am scared. It's going to hurt... a lot. There is extensive physical therapy afterwards, and that hurts a lot, too. And then of course, the 45% recurrence rate... I can't handle that at the moment.
I haven't been able to see myself through to optimism about this. I see myslef as the one who *makes* the statistic- the "it just doesn't happen" doesn't hold with me. The whole recurrence rate stacked up against this tumor staying away... I can't get optimistic that this surgery will be the end. It seems just that there is no end. I know some of you feel that, too- I've heard you say it to me. Please tell me that there will be an end. Don't get sucked into my defeated feeling about this- I need you to strengthen me.
So, I have a diagnosis, and a treatment plan; things I have been fighting for for a long time. All the pain... it makes sense now. So, why am I depressed?
hi Sare,
ReplyDeleteunderstandably you're depressed, it's been two years of non-stop pain and trauma, with another long stretch in front of you, your guilty feelings of making your health a priority, anger and resignation that your aspirations and career joys have been put on hold, and an unclear resolution of it all given the 45% recurrence rate that you face now.... it's enough to make anyone feel overwhelmed.
I don't think you can force yourself to feel chipper. Finding the things you like to and can do comfortably, and people who soothe you along the way, gleaning wisdom from Torah in small doses, enjoying the adorable traits in your kids and reveling in what they say and do, ... if you keep focusing on the little things that keep you "up", eventually you will start to feel better overall. You've been doing this all along, and it will help you now too.
You have so many people who love you, and yes, you and your family and your loved ones will get through this! Just(Very) L'at, L'at, and day by day, and with the prayers for Sarah Rachel Bas Tova.
LOL, XXXOOO Miss you!
Devorah B.
I would be very worried about you if you were not expressing all the things you are expressing in your writing. All the fears and worries are what make you human. I agree with Devorah that the little things will pull you through; the kids, friends, the upcoming wedding...all those things will help.(Robert is not a little thing so he was not on the list!) One big thing is admitting that you are depressed, pretending to the outside world that everything is fine is one thing. Pretending to people close to you and to yourself that everything is OK is something totally different. You can get through the bad days by knowing the "enemy" and taking the steps to beat it, not by hiding the truth from yourself.
ReplyDeleteHang on pretty lady...there are lots of us hanging on with you. Troubles are halved when shared just like good times are doubled when shared.
luv ya'
brc
I agree, you have to feel these feelings to get through them. I totally understand your fear of surgery. I have it and I've not had the issues you do.
ReplyDeleteDo remember that God has a plan for you. It's just hard to see it through all the things in your life right now.
I am sending up prayers for you for peace and strength to go through this next phase. You can and will do this.
There will be an end! I know you're tired of being strong. Someday (soon!) you'll look back at this and be glad it's all over. And someday your children will look back and thank you for all the gifts you gave them, including showing by example how strong someone can be and how you can get through anything!
ReplyDeleteSarah,
ReplyDeletePerhaps your suffering is part of the pains before the coming of Mashiach.
Perhaps just as Rabbi Akiva could look upon the ruins of the Beis HaMikdash and see in it the reassurance that salvation is coming, you can know, too, that your salvation is coming!
Larry