This Is Just My Life

I got the MRI/MRV results last night.

I didn’t tell anyone except my husband and a friend. Not because it wasn’t good news, but because it was. They were clean. Nothing showed up.

Nothing showed up.

Please don’t misunderstand me, I wasn’t hoping for a blood clot, I wasn’t hoping for a tumor or something requiring urgent brain surgery. But I was hoping for something. Hoping for anything. Because the thing about a clean MRI is that it’s not always a good thing. A clean MRI does nothing for me. It doesn’t mean that I don’t have unrelenting headaches. It doesn’t mean that I’m suddenly sleeping more than 3 hours at a time. It doesn’t change anything. If anything, it is the opposite of change.

A clean MRI means that we have no plan. It means that we are absolutely no closer to finding a way to slow down these headaches. It means that we are back at square one.

For the record, I hate square one and the fucking horse she keeps riding into my life on.

I didn’t sleep much last night because I kept having dreams about my headaches. Over and over I’d dream about sitting in doctor’s offices and being told that there was nothing to be done. I woke up short of breath, in a cold panic. I realize that this dream may not sound like much of a nightmare, but it is for me. It’s my nightmare, my future.

All day I’ve wandered around in a fog. My doctor told me to call and schedule a follow up appointment, and I put in the call, but have no expectation of being called back anytime soon. (The only way I got the results was to email my doctor and she said that she hadn’t gotten any messages. Yes, that does make me want to scream.) But I also just keep thinking, why even bother?

We know that there aren’t any medication classes that we haven’t tried. We know that we’ve done all the tests. There isn’t really anything left to do. These headaches aren’t going to kill me. They don’t seem to be doing any real damage to my brain (if you let go of that whole brainstem slumping business). There’s just really nothing to be done.

For the last two years I’ve had a headache for every moment of every day. I haven’t had a day off, I haven’t had a night off. There is literally not a moment where there isn’t pain. I know that some of the people in my life think I’m exaggerating. They think that the pain cannot be that bad because I still go to school, because I bake, because I go on vacations. Because I refuse to give up on the life I chose.

I have learned to live with pain. It was not something I ever wanted or hoped to do. It was a necessity. It was the only way I didn’t have to give up on everything I’ve worked for. The pain is very real and if anything, it’s generally a whole lot worse than I make it out to be.

I don’t know what the next step is. I don’t know that there even is one. Right now things feel tired and hopeless. And in a way, I think that’s easier. This cycle of hoping and hurting sometimes feels more exhausting than the pain. Two years of disappointment only intensifies the ugliness of the two years of pain.

I just keep thinking that maybe it’s time we stop trying altogether. Maybe it’s time to stop thinking that this is just a phase. Maybe it’s time to realize that it isn’t something that’s going to suddenly stop.

That this is just my life.

17 Responses to “This Is Just My Life”

  • katy:

    My heart hurts for you. I can totally appreciate how hard it is to have no plan. I’ve never been there, but I’ve known others who have and I do think that it’s one of the hardest things–not having a clue how to fix things. I hope you are able to get some relief, but i realize that it might not be possible. Kudos to you for not letting it get you down.

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  • I’m so sorry, Katie. I was crossing my fingers that there would be an answer this time. :(

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  • I’m so sorry. Having no answer is almost worse than having an answer you don’t like. You’re left with no direction and twisting in the wind.

    I admire your courage and persistence to pursue the life you want in spite of this chronic pain.

    I will continue to hope and wish for your peace and a pain-free future.

    Hugs.

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  • Jess:

    That sucks. I’m so sorry. I will keep hoping that something makes those damned headaches stop.

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  • there is nothing worse than having a problem and no way of even attempting a solution. I don’t know how you manage to be as charming as nice as you you are in person when you have such pain. I will continue hoping that some relief heads your way!

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  • Jodi:

    Katie,

    As I have said before I know what you are dealing with TOO WELL. The only difference is that you are handling it more gracefully than I ever could. My life has completely come to a DEAD STOP.

    How about Mayo Clinic (AZ location)? How about I talk to my Neuro Doc and see if he has any ideas or MD names in your area or any area for that matter? He is considered a HA Specialist and attends/speaks/meets HA Specialists all over the country (and beyond).

    Whatever you do; please don’t let anyone talk you into going to MHNI (Ann Arbor, MI). It was the worst experience of mine (and my families) and 20% of the patients there with me lives. They doctored my records and several other patients so that the state paid them for our care (in addition to what our insurance paid).

    Let me know.

    Take care,

    Jodi

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    Katie Reply:

    @Jodi, I appreciate the suggestion. I’m definitely going to give my current neurologist a bit more of a chance before switching around again. She’s a headache fellow at UCLA under some pretty good headache specialists, so perhaps I haven’t seen everything they have to offer.

    I definitely will keep Mayo in mind if this neurologist doesn’t pan out. Thanks!

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    Jodi Reply:

    What about having another radiologist or even the Neurologist look at your MRI/MRA scans. Maybe they will see something this radiologist didn’t.

    How long did the Chari go unnoticed because they weren’t looking for that? Did the radiologist know he was ruling out or in a very small spinal leak?

    What about the MD that presented a few months back; do you think he would read the scans and give you some feedback?

    I am just desperate for you to get some answers.

    Also, you may have mentioned this before but have you had your B12 and Vitamin D levels checked recently? Mine are checked every three months and my B12 is less than 150 and my Vitamin D is less than 5—both of which are DANGEROUSLY LOW and my body is not absorbing the shots or medication.

    When do you go back to the Neurologist?

    Good luck tomorrow!

    Jodi

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  • You put into words exactly how I feel.

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  • Oh dammit. Are you absolutely sure ithe MRI was clean? I was so hoping… Hell. I’ve been in pain for over five years now. If you have to be in pain, I hope you learn to accept and live with it soon. I’m still trying and it’s holding up my life!

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    Katie Reply:

    @Kathy, I got the actual copy of the radiologist’s report via email. Nothing except occlusion of my sinuses that has been there since I was 12 (and is not the cause of the headaches). Everything else was unremarkable.

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  • Al_Pal:

    Well, frack a quack! I was going to say %uck a duck, but I wasn’t sure about this being a place where I should swear with impunity…but if ever there was a time to swear…
    Big hugs to you. I’d rub your back if I could.
    xo

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    Katie Reply:

    @Al_Pal, You feel free to say fuck here whenever you want. :)

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  • Sue G:

    Isn’t it “funny” that you pray for an MRI that shows something in your life and I pray for MRI’s that show nothing…and neither of us gets what we want. But we learn to live with the lot that we are given. We move forward as gracefully as we can, given the circumstances, and we constantly have to remind ourselves to take back our lives.

    It can be daunting. But it can be done. And we are living proof.

    Don’t give up.

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  • kellye:

    so sorry.
    i hope you find the strength and determination to keep on keeping on.
    one day, you will be pain free!

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  • Sarah L - UK:

    Hi Katie, my first post. I’m new to your blog but I found myself nodding the whole way through this. If it’s any comfort to you, I know how you feel. I was only diagnosed the week before last but that is exactly what my life has been like since the beginning of August. Obviously that pails into insignificance compared to what you have been through, but if it helps me to know I’m not alone, perhaps it helps you to? S x

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  • Hilary:

    Dearest Katie,
    I feel your pain and frustration on a daily basis. I’ve been trying to deal with my Migraines for almost 12 years. I lost my job because of them. Everyone always asks, oh how are you? I always try to smile, shrug, & say I have good days & bad days, I try to make the very most out of my good days. I commend you on your determination & strength!! I saw some really BAD doctors for the first 6 years. I trusted that they were telling me the truth, clean MRI/CAT/EEG/EKG/Sleep Lab/Blood draws/Allergist/Spinal Taps/Bi-Laterial Cervical shots/Every drug class they could think of. I had to file for disability due to the horrible debt from Dr’s/Clinics/Pain Doctors/Neurologists/& Hospitals. I feel guilty on the ‘good’ days, but the bad days just SUCK! I’ve vomited so much over the years, that my stomach acid ate over 1/2 my teeth, I would be passed out on the bathroom floor for hours from vomiting & pain. Things have gotten a little better for me since I started back up with MHNI in October 2010. I had to stay @ the pain clinic @ Chelsea, MI Hospital for about 2 weeks. They don’t believe in any kind of narcodics, they try to help you deal with the pain, and they haven’t stopped trying with me. I have to go once a month, but the pain has lessened a little. I know it’s not a solution for everyone, there were several people with different migraines that didn’t get any relief. I just know that they care enough to keep trying. I have to take medications for other conditions also, and having a neurologist who knows what drugs can & can’t interact together is somewhat comforting, I’m not scared that someone could accidently kill me with the wrong drug anymore. I’m sorry for anyone that they couldn’t help, my heart goes out to both them & you. I also just can’t stop hoping & praying that someday, someone will find something to make them stop. You are in my thoughts & prayers. Much Love, Luck, & Hope to you.

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Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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