Facing It, Again
So after reading some of the comments and giving myself some time, I’ve come to realize that I totally wasn’t really facing anything yesterday. As it turns out, it’s pretty easy to face a scary future on a good day, and yesterday was a good day.
Today? Not such a good day.
Today my headache is massive. Today we more or less established that the abdominal binder, one of the two things that we want to try to fix this headache, isn’t the answer, isn’t even helping. Today I’m facing a different reality than yesterday.
And this reality? It totally sucks.
But it’s probably a good taste of a reality I had not anticipated.
I can get by on days when the pain is not so bad, but those days are never guaranteed, and they are not as frequent as I’d like. And frankly, those days seem to be fading away. Each week things seem to get worse, instead of better. Each week I seem to have more days with undeniable pain.
If we’re being completely honest, I don’t know if I can manage all the things I need to manage on nights like this. Especially as these nights become more the norm and less the exception. I hurt right now in a way that defies adjectives, or at least the ones that aren’t just expletives.
Everything feels worse, nothing feels manageable at all.
It’s nights and pain like this that make me consider my life, make me consider if I can even cope.
I’m reaffirmed in my decision to keep looking for neurologists. I am being hard on my current one because she hasn’t figured out the answer to all my problems in two visits. And that said, I also know that there isn’t really an answer to them, but the issues run deeper. It’s not just about whether she can fix me. I need to have a neurologist for the rest of my life (man that sucked to admit) and I don’t see myself having the relationship I need, a relationship where I can feel safe in giving up control, with this neurologist.
I can’t control what happens with my head. I have no say in that and that’s potentially the most difficult part aside from the blinding pain. But I can control who helps me, who directs my care, and maybe that little bit of control is a key to finding a way to manage my life.
If I’m going to deal with this pain, this headache, forever, which is a reality I don’t want to even consider, let alone face, I need to feel comfortable with my caregivers. I need to feel like that doctor might find the miracle. I need to feel hopeful. And though this doctor is lovely and kind and knowledgeable, I don’t feel that hope, that possibility of a miracle cure. I need that, it’s the only way I can keep going, that I can even consider getting up tomorrow morning and trying again.
Maybe holding out for that hope is just further proof that I’m not really facing the realities that I thought I was. But try as I might (and lo, I have tried), I can’t seem to ditch hope.
I can’t seem to not wish for something more, something better than this. Better than these last 11 months, better than tonight.
14 Responses to “Facing It, Again”
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Welcome! I'm Katie, a 27 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 falling over in public to being a doctor's wife. Sit down, get comfortable and stay for a while.
xoxoxoxo
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You know, there is no way to tell if it was the abdominal brace that made the migraine worse or not.
Could you try wearing it for a short period and increasing the time by a bit everyday and then charting everything going on to find a pattern?
I’m still on fire from “Part 1″ which I just finished and wrote a comment on!
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Katie Reply:
July 15th, 2010 at 9:45 pm
@GreenInOC, Well, my doctor said that I’d notice a difference immediately, so that’s what I was assuming (I’ve been wearing it more or less all day since the appointment). And considering how God awful my headache is right now, I can’t imagine the binder is working. But I’ll try again tomorrow anyways.
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GreenInOC Reply:
July 15th, 2010 at 9:55 pm
@Katie,
I missed that tidbit, my eyes were probably still crossed from being so irritated by the first post!!!
Still, I would think that your migraine may have been aggravated by something else so if it were me and if you were asking me (which it’s not and you aren’t!), I’d keep trying but keep a VERY detailed log of time you woke up, what you ate, when you ate, what you drank, when you drank, abdomen binder time on/off and a log of how bad the pain is with each entry.
OMG – I’m still pissed!!!
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I’m glad to hear you’ve decide to keep looking for a neurologist. Your ambivalence about her seemed to be radiating out of the posts on your visits. The reality you’re facing today so desperately needs a doctor who says “I don’t know, but I will find out because we need to fix it” rather than “I don’t know why this is happening, but it is and I don’t know what to do about it.”
The first type? One of my specialists is in that category and he’ll be sending me to Oahu (eventually) for a surgery only 2 doctors in the country do with any degree of accuracy. The second type? There are far too many of those practicing medicine, which is why I went with untreated wrist problems for six years.
You totally deserve to find the first type.
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I don’t want you to give up on the brace quite yet. As you’ve said before you haven’t fit into any “norm” up until this point so maybe you still won’t. It’s possible your normal is feeling better after two days of wearing the brace. It’s too soon to tell. And because you haven’t fit into the norm I don’t think you can ever give up hope. The more you read and the more you research you might happen upon some weird and random thing that helps you out. Don’t give up hope! You’re just having a bad day and we all have those. AHA! You’re NORMAL!
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I’m so sorry that this new Dr. hasn’t been much help. I really do hope you find one that not only you like & are comfortable with, but also one that has the answers that you need. Hugs.
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I don’t think I’ve ever put this in writing before, but my highly recommended OBGYN never sat right with me. And he missed the rather obvious fact that my child was dying inside of my uterus. Now days, I don’t waste five minutes with a doctor that I don’t feel warm and fuzzy about–even if that means looking around for a while. Also, I’ve fully accepted that I am Charlie’s primary person and everyone else is just supporting me in that role. I don’t even try to explain myself any more–I just say, “bad vibes” and move on. Call me crazy, but when you’ve ignored your gut and gotten burned–well–I’m not going there again.
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Katie Reply:
July 17th, 2010 at 8:32 am
@Katy, See, and that’s it. I don’t expect any doctor to know all the answers to anything. I live with a doctor, I know that there’s just no chance of that. But, I expect a doctor to try to figure some things out for me. I expect a doctor to go home and do some research, maybe not the first time they meet me, maybe not a ton of work, but some research to make my care better, much like how my husband does almost every night for his patients. I know he’s not the only one who goes home and tries to learn more for his patients, but so far I’ve found maybe one doctor who has ever done that.
I’m willing to deal with not warm and fuzzy if the doctor is good and focused on my care.
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Hey
This is my first comment here. I stumbled on your blog and something about it really caught my attention. I have been reading for a few months now but never really knew what to say. I suffer from chronic migraines. The last few nights I’ve been having a severe one and I could not stop thinking about you.
I have not back-read on all of the treatments you have tried but I thought maybe I would throw a few things out that you have probably heard before. I just want to help you so bad because I know how awful and crippling a headache is.
Have you tried a chiropractic adjustment?
Acupuncture?
Hot stone or deep tissue massage?
I have noticed that my worst migraines are always around my ‘monthly gift’. I don’t know if the loss of blood has anything to do with it. But maybe get your iron levels checked?
I read that low blood pressure may be a suspect? Maybe try a no or low salt diet?
Also what about exercise? It increases blood flow?
I am not sure I just want to give you some suggestions.
I know that when I get my awful awful headaches I can feel the blood pumping through my temples. When I apply huge amounts of pressure on my temples or on my eyes it helps.
This is me really going out on a limb. I really really hope you find a doctor you can trust and who is also willing to help you and put in the extra time to research and find solutions that may help you out.
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Hope is there. Close your eyes and embrace it. Take comfort in it. It’s there . You’ll be okay. Prayers, sweet one.
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[...] Katie at the Overflowing Brain writes about the very real difference doctors can make in a patients life — or not. [...]
I believe that you have to find a doctor that “fits” w/ you, and that is a huge priority. I had a rheumatologist that was voted Atlanta’s Best, and he decided to ignore all my medical records and take me off my meds so he could actually see for himself my joints swell! WTF! How is that one of Atlanta’s Best DOCS?! It took me 5 months to find another doctor, so I was screwed for a while, and yes my joints did swell, but unfortunately not for him to see…I went to the ER to have them make a note of it for my new rheumy, who I am still seeing and love very much!!! Keep looking, and you will find that neurologist that “fits” w/ you just perfectly!!! I just hope that you don’t have to suffer like I did in the process of searching!
Check out my story in my blog post, “Connnecting the Dots.”
http://gavertarm2bambidextrous.blogspot.com/2010/07/connecting-dots.html
Blessings,
Dana
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Oh man, I’m so sorry that you’re having a hard time. I wish you all the luck in the world tracking down the doctor that fits with you. I know it’s hard work, but it has to be worth it, right? Just to find someone who tries. Who you know is doing their best. It’s really not too much to ask for. Hope you are finding relief soon!
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