Something more than this
I know that many of you will be shocked to read that the morning after I typed up the blog about how the blood patch had reduced my headache pain, that the 7 month old headache came roaring back. And it has stayed at incredibly painful levels ever since.
On the one hand, I was prepared for this. I knew it was a possibility and I wasn’t really surprised.
But on the other hand, I am frustrated. After having 5 full days of diminished head pain, I’d be lying if I told you that I’m not disappointed right now. That getting to have those less painful days didn’t make the return to pain just that much harder.
I have been struggling with what to do now. What I didn’t really mention a few weeks ago after my last doctor’s appointment was that I was given another treatment choice. But the other treatment involves several days in the hospital, would be incredibly expensive and force me to miss more school than I can afford to right now. But that said, it also is potentially the only option that we have left.
I can’t afford to spend that many days in the hospital or miss that much school. I can’t afford the bills that will come with this treatment.
But as I sit on my couch in so much pain that I can’t study for either of the quizzes I have to take tomorrow I just wonder if I can really afford not to.
More than anything right now, I want to kick myself for getting my hopes up. I know that many of your are ardent believers in hope, but so far it’s gotten my nowhere. It’s gotten me to disappointment, tears, frustration. It’s gotten me here, on my couch, feeling like shit and wishing that I’d never had this blood patch in the first place.
I know that I can function like this, I know I will be fine. But I also know that I want more than that. And maybe that’s selfish and wrong, but I want more than this life I have right now. I want more than lying on my couch night after night, feeling too tired and in too much pain to spend real time with my husband. I want more than having to skip days of school because I just can’t manage through the pain.
I want the life I had a brief glimpse of last week.
I just don’t know how much I’m willing to sacrifice. The truth is that I’m drowning in school a little. I am passing everything with As and high Bs, I’m in no danger of failing right now. But my concentration is so diminished because of the pain, because of the sleepless nights, that I worry that at some point failure isn’t just going to be a fear, but a reality.
But I just don’t know if missing a week of school for this test/treatment my neurosurgeon suggested is worth it. If it doesn’t work, I’m not at square one, I’m a week and thousands of dollars behind square one. And I feel like this is an impossible decision.
And it’s one that I’m not prepared to make today, but one that I can’t get out of my head either. It plagues my thoughts, my conversations, many of my waking moments.
I’m terrified I will make the wrong one. I’m scared that the procedure won’t work, that I’ll waste time and money. I’m scared that it will work but the time sacrifice will be too great. I feel like it’s a no win situation, like no matter what I choose, something will suffer.
I’m scared.
And I’m tired of fighting.
15 Responses to “Something more than this”
Leave a Reply
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 don’t blame you for not wanting to try another thing that you suspect will probably not work when nothing else has. I’ve been doing this for seven years, and I feel the same way every time I do a drug, treatment or surgery and get my hopes up only to have them crushed and be left with nothing but another huge bill.
I think the only thing you can do is to discuss the option with those who love you and know you best. Don’t do it just because they think you should, but try to keep an open mind. And if you decide not to do it, that’s okay. It’s your body, your pain, your life.
[Reply]
*hugs*
I’m here for whatever you need.
[Reply]
Easy for me to say but the money is well spent if it means a possible end to the pain. What are the odds that the additional treatment could be effective? Your quality of life sucks…School will still be there after you get out of the hospital. I know it is easy for me to spend your money. I just know that the pain is intolerable now and will become increasingly so since at some point your pain tolerance gets lower. One can only stand so much pain and then it is impossible to ignore.
[Reply]
Does your doctor think it’s worth it…that there’s enough chance of success? What does your husband think…from a husband’s point of view and a doctor’s point of view? I think if the potential benefits outweigh the risks to your health then it’s worth it. If you don’t try, you’ll never know and you’ll always wonder. Have you looked into other medications that aren’t traditionally used to treat headaches/pain, such as beta blockers or anti-depressants (tricyclics or others)? I know these obviously wouldn’t cure your headache, but maybe they would help lessen the pain. Whatever you decide, please don’t sacrifice your health when there are still potential treatments available.
[Reply]
Katie Reply:
March 30th, 2010 at 5:47 am
The only category I haven’t tried is beta blockers. And that’s only because I have very low blood pressure and the fear is that if they put me on a drug that lowers it, I’ll pass out with reasonable frequency. Though I’d try it if it stood a chance to work. In a heart beat.
[Reply]
Can you finish this semester and then have the procedure in the summer?
[Reply]
Katie Reply:
March 30th, 2010 at 5:46 am
Sadly, I don’t really get a summer. I have a week off at some point in June and two weeks off in August.
[Reply]
As others have said it’s ulitmately your decision. I know nothing about chronic pain other than what I read on your blog – and even then I still can’t fully understand. That being said here are my two, meaningless cents. I think you should try it. If you had less pain you could put more into school, have less pain, be able to be more available for your husband (meaning hanging out because of less pain). I think it’s possible that if you try it everything might be a little bit better. Is a “little bit better” worth it? That’s something I can’t answer.
I wish I could take some of your pain away, though. You could always try holistic medicine to see if it does anything (if you don’t think it’s all hocus pocus). I don’t think it would make it worse but there is always a possibility that it could make it a little better…
Katie – I’m so sorry!
[Reply]
I wish the decision was easier. I understand the school thing, but I especially understand the money thing. It’s hard to decide, I would say maybe take a semester off school (can you do that?), get the test/treatment and see where you are.
HUGS
[Reply]
Katie Reply:
March 30th, 2010 at 8:15 pm
I sadly cannot take a semester off school. I can take a year off or I can keep going. There just isn’t any sort of middle ground.
[Reply]
I hate to ask another question about your school schedule since it seems like you’ve thought of everything and your program is relatively rigid, but is there some sort of medical necessity you can file to be considered “full time” taking part-time hours? A roommate of mine took a medical drop for a few of classes one spring and returned to school the next fall “full time” while taking six hours. Of course, that was undergrad, and I don’t know how your program works, which is why I ask.
I’m so sorry your facing so much pain and disappointment. I am a believer in hope, but I also know the downside to hope is the crash on the other side.
I can’t help but wonder, if you get the other procedure and it helps, if you won’t wish you’d done it sooner?
There I go with the hope again.
[Reply]
Katie Reply:
March 30th, 2010 at 9:49 pm
I can drop down to part time and keep my insurance and all of that. It is an option. BUT, that option means it’ll be a full extra year of graduate school, and I just don’t think I can do four years. It’s probably a stupid decision and it’s one I’m sure I’ll revisit more this summer, but for now, the only feasible options are keep going full speed ahead or quit altogether. Time will be the real test.
[Reply]
As you know, I sometimes look at things a little differently than other people. And you didn’t ask me anyway, but you know me well enough to know I rarely wait for an invitation to state my opinion.
School? So. Expensive? So.
If there is a chance that you can have some of your pain alleviated or even be pain free, there is only one thing to think about…
You’re worth it!
There’s a difference between living and surviving. You know it, and you know I know it.
Do what’s best for you in the long run.
[Reply]
Elizabeth Kaylene Reply:
April 1st, 2010 at 10:34 am
I agree with Sue, Katie. I don’t know you any further than the words i read on this blog, but YOU ARE WORTH IT, and I think it’s worth a shot. I completely understand wasting time and money on things that may or may not help. I’ve been through hoop after hoop with possible cures, so I know how frustrating it can be. But I’ve also promised myself that I wouldn’t down anything, because you just never know.
You deserve to feel better. You deserve to live life without pain, or with as minimal pain as possible. I feel like you’re completely beaten down at this point — and believe me, I know that feeling, I felt it all day yesterday — but you’ve got to remind yourself that it’s okay to want more. It’s not selfish. Maybe hope isn’t in your vocabulary right now — I so get that, too — but don’t give up just yet, not when you still have an option.
[Reply]
I don’t have anything to say but *hugs* I was hoping and wishing the blood patches would work and you’d be magically cured. *more hugs*
[Reply]