Acceptance
I know some of you have been waiting for an update on last week’s blood patch and if it stopped the headache. I haven’t really intentionally withheld an update, but I haven’t written anything substantial about it yet for a number of reasons.
First, my back has been a disaster. This blood patch was done higher in my back and more blood was inserted than last time, so the recovery has been harder. Today is the first day I haven’t been in near tears levels of back pain, so in that way, it’s been really difficult to actually determine my head pain in comparison.
The other reason is because I don’t think I really know what is actual effect of the patch and what is the psychosomatic effect of it.
All that said, since the blood patch, my head has been noticeably better.
As much as I want to tell you that I’ve had pain free days and am living a headache free life, that’s just not the reality. There’s a small part of me that is a little disheartened, but mostly, I am thankful for the improvement I’ve seen.
A lot of people have asked if it’ll get better as time passes. The truth is, probably not. This may very well be as good as it gets.
Ever.
And that reality is a little tough to face. There are a few other treatments, but they are more involved, more painful, more expensive, and not necessarily more effective.
And so my attention now gets focused on learning to live this life. This one that may or may not be filled with pain. This life filled with blessings and challenges. I have no other choice but to keep fighting, keep pushing, even with and through the pain.
I’m not going to give a big speech about how I’m not going to whine ever again. Or how I won’t have pity parties. Because let’s be honest, I will whine. I will have pity parties. But what this week of reduced pain has shown me is that I can manage. Even at my worst, I was managing, coping, functioning.
And so that’s what I’ll continue to do now.
I may not ever feel better than I do tonight. I might wake up tomorrow and be back at the most extreme levels of pain. There is no way to know, no way to predict, no way to prepare.
But for the first time, there is acceptance.
I’m Katie. I’m a 26 year old graduate student. I’m married, I live in Southern California.
And I have chronic pain.
13 Responses to “Acceptance”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
I’m Sarah, I’m 28, I live in the Bay Area. I work as a public health educator and a youth health education coordinator.
I live with chronic pain, too.
You are not alone.
*waves south to you*
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I’m Kristen. I’m 29. I’m a mother, wife, writer, student midwife and I also suffer from chronic pain.
No speeches from me either – just more of Sarah’s message – you are not alone. That, and also that I am really proud of you for realizing that though this pain may be a substantial part of your life, it is not even close to being WHO you are. It has nothing to do with who you are. It will affect what you choose to do, but who you are… is whole – and really beautiful. xo
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I have a friend who is in grad school living with pretty aggressive RA. Your ability to live with chronic pain and be able to be successful truely amazes me. You are an inspiration!
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I’m Sandi, I’m 40 years old. Mother of 3 and business owner. I live on the Gulf of Mexico and am learning to accept my new life which includes chronic pain.
Your absolutely not alone.
“waves west to you”
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I am 44 and am living with chronic pain. I am trying to do it successfully to. Venting on blogs and twitter is a lifesaver. But really, I just want to live my life as best I can and getting to that point with chronic pain isn’t easy.
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so very proud of you.
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Well said.
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Me too, Katie. Chronic pain, every day, since that 1978 car accident. And now with the R.A. You just do the best that you can do, as you have been doing for all of the years I’ve known you. All I can say is…on the days it really gets you down, just reflect back on all that you have accomplished already, while dealing with excruciating daily pain. And then give yourself credit for that, along with a little pat on the back. Then carry on, just as you always do!
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I’m Liz, I live in Waterbury, CT, I’m 21, and I live with chronic pain, too. It’s a bitch. Some days, I want to scream and scream. Others, like today, it’s hard to believe I ever suffered any pain at all.
I’m so glad to have found your blog, because as much as it sucks that we deal with this shit, it’s nice to know I’m not alone. Different situations, different illnesses, but it all boils down to trying to live with it.
I recently saw an episode of Mystery Diagnosis where this woman had a CSF leak in a spot right behind her nose. She had dozens of patches done and finally one seemed to stick. She just can’t go in high altitudes or it’ll leak. Sometimes it leaks a little anyway.
Anyway, I thought of you when I saw the episode. This woman was unbelievably strong and possibly a little stubborn — kinda like a certain Katie I know
— and continued to do every. single. thing in her daily routine, mind numbing headaches and all. At one point she couldn’t get out of bed, she was saying, but she still just seemed so strong to me.
Stay strong, Katie. I’m here for you; even though we don’t talk much, feel free to email me any time you want to whine or talk or whatever.
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I can totally relate. Last week I found out that my disease has progressed quite a bit. I knew it because of the amount of pain I have on a daily basis. The hardest thing to accept is that 20 months ago they gave me 1-3 years. I am half way there. I don’t accept that they know when I’m going to die, but I have to accept that every day is going to be harder. And I have to accept that severe, chronic pain is part of my life. And I have to hold on to being the mother of a precious 7 year old son and the wife of my soulmate. I wish you the best of luck. Your blog has helped me to see that I am not the only one fighting my body to live my life. I wish you peace and comfort every day.
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Hi I’m 26 and I have chronic back pain. I am close to accepting this because I won’t be able to afford more testsand treatment. Today I just had cervical and lumber xrays and MRI scans done which I will pay for out of pocket. I lost insurance at 25. I was fired from my job preventing coverage there and am just scraping by while going to school. I feel your pain. You aren’t alone.
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I have to say, completely selfishly and with the utmost kindness and respect for you in my heart, that your acceptance of this fate is hard for me to swallow. When I read your blog, in regard to the health/brain stuff, it’s like your just rehashing my life and my pain – it’s just SO frighteningly similar. So for you to accept where you are at now is a bit tough for me to take for your hope for a pain free future was my hope for a pain free future. So if you don’t mind, I’m just going to hold out a little bit longer and hope that one day you will post blog that announces that the pain is gone. That this blood patch DID work and your low CSF is fixed. Failing that, I hope for, like your good self and others who have commented, for the courage to accept what might just be my fate too.
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I live with chronic pain, and I’m in my early 20s. I also hold regular pity parties where I serve fake wine (can’t handle it, unfortunatly!!) and lots of chocolate.
You’re all welcome to come along.
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