…And it all started with headaches

“Sometimes your heart needs more time to accept what your mind already knows.”

So many of  you have been so wonderfully kind with your emails, texts, calls, etc checking up on me and my headaches. I haven’t really known how to write about it. I mean, I have friends who are dealing with things that are so much worse than what I am dealing with  and they are my heroes. They are fighting for their lives. I’m just fighting for normalcy and answers. Ironically, every answer I get sends me to a new “ologist” with new questions. And it all started with headaches.

It actually took me nearly two years to get an official diagnosis of “chronic daily headaches” and “chronic migraines” on my medical records. (Why, yes, I am a little bitter towards the careless asshat GP doctor who shall not be named who  I was going to for nearly 20  years who couldn’t take the time, effort, or have the ability to figure this out. But then again, he probably doesn’t know his ass from his elbow so that might have held up the diagnosis.)

I’ll keep it brief because let’s face it, no one wants to read the medical woes of someone else unless it’s gory (it’s not) or scandalous (it’s not) or it is worthy of good gossip (it’s not-though some have asked in hopes it is).

So here’s the confusing low-down. My internist ran a lot of tests on me. Some of the blood work came back indicating a need for me to go see a rheumatologist. (Still no headache answers but attempting new meds to help.) Now armed with new meds and the rheumatologist, we did many, many blood tests. I asked if she was checking to see if I had an autoimmune disease. She said with my history and previous blood work, it wasn’t an “if” it was more like a “which one” situation.  From those we discover autoimmune issues with my blood and my thyroid. (The thyroid has me heading off to an endocrinologist.) Because that is so normal and boring, the complete Lupus panel came back with super high inflammation numbers that would indicate Lupus but without the inflammation and results you’d see in other organs that are present in someone with Lupus. (Not normal.) So we are just in wait and watch. (It is sort of like receiving a box in the mail stamped all over with “Fragile: Broken Glass Inside” and you open it and it is full of unbroken coffee cups. It makes no sense. But, you are careful with those cups and check them often for cracks and chips.) Was the mistake in the results? A freaky blood thing? No idea. One possibility that is being tossed around with all of this crap is that Fibromyalgia is at work and messing everything up. A lot of those benchmarks are showing up. (How rude!)

And still? No headache answers.

However, I have FINALLY found an amazing neurologist. In fact, she is one of the top neurologists in the state at one of the top neuro clinics in the country. I hit the motherlode with this one. Now, instead of another doctor throwing another medication at me, I have  a doctor who listens to  me and seems to connect the dots. In fact, I now have a team of specialists working with  me. It feels amazing to be working with traditional medicine, biofeedback, physical therapy and accupuncture all together with one person leading them. I knew from the reputation that I was going to one of the top places in the country but to experience the level of care has been a huge relief.

My first appointment was nearly 3 hours long. A lot of talking and background information. I also received some injections. Eighteen to be exact. Yep, I had the big fun of 18 lidocaine injections in my neck, temple area, and forehead. And, yes, it hurt like you’d think it would. But it did give me relief. Next up we’ll probably start botox. It just depends on the frequency and severity of my headaches and migraines as to what path we take next.

We still don’t have answers. I still am in a lot of pain but we are all working together to figure it out. I will admit it gets frustrating trying to juggle all of the specialists dealing with all of the crap but my neurologist has been amazing in taking charge of all of them. Even the ones that usually take point, are listening to her.

I’ll be honest. It gets frustrating. I’ve had some recent changes that have thrown us a curve ball so we are staying on top of it.

It sounds like a crazy cruise through WebMD. I wish. But? This is what I am dealing with right now. That is one of the reasons I have kind of shied away from the blog. I shared this with someone  (though I should’ve known better) and already received a snarky remark about it. This is not what I want. This is not where I want to be. I don’t like sharing my health issues. I have lost some online opportunities because someone in charge thought I couldn’t handle it. (I know what I can and cannot do and I *will* tell you. Trust me. I know the price I will pay if I don’t and I do not want that.) I’ve had snarky comments. I’ve had people tell  me that if any one person had that much going on they would be nothing more than a curled up, weeping, ball of crazy– that it was impossible. (Hello! Have you met me?) I keep to myself for the most part. In fact, I have even pulled away from those who love me because it’s too hard to be “that person” who has issues. So, it is so much easier to bury the pain and issues. Well, not as much easier as I feel like less of a burden. And at this point, that’s the best I can to for those around me until I can get all of this insanity under control.

PS- Sorry I didn’t keep it brief. If you made it this far, thanks for hanging in there with me.

PPS- No this will not become a blog about health.

PPPS- Do you have any chocolate? I could really use some chocolate. Thanks!

todo

 

11 Comments

  1. Totally understand my lovely, I am living something similar.

    I have got to the point that even if I am in terrible pain I just say I am tired. People understand tired. They tell you that they are tired too. You can swap tired stories. They don’t understand chronic unrelenting allthedamntime pain.

    Sending all my love, ignore the idiots. x

    • Oh, Kelley, you SO get it! I use the tired one as well. It is easier. There is also the “I’m fine” response because always answering “I’m in unrelenting allthedamntime pain” makes me feel so weak and worthless. I’m sorry you are dealing with something so similar. Though, “I get it” are three beautiful words.

      Sending you love right back.

  2. The internet is a weird place. Even though we’ve never met, or corresponded, et cetera, I feel connected to you. I am grateful for how much you have shared with us over the years. I’m always so glad to see a post from you in my feed…Ignore the whiny people. Know that for all the whiny people there are probably ten lurkers (Like me!) out there who keep you in our thoughts, even (especially?) when you’re not posting. I’m glad to hear you’re seeing a good set of doctors that are making progress and will hopefully end up with you feeling better.

    • Jennifer, thank you so much for your comment. It truly means so much to me. You brought a huge smile to my face. Thank you for that. I’m happy you’re still hanging out here. I hope you stick around. Be well and happy!

  3. What a treat to hear from you today!

    I’m so thankful that you are getting answers-even if those answers are slow and weird. And few and far between. There are plenty of us out here that will be supportive.

    xo, my friend

    • And what a treat to hear from my headless friend. 😉

      I’m glad to be getting some answers. (Sometimes too many answers, thankyouverymuch. lol) As always, I appreciate your support.

      xo to you, my dear friend!

  4. I love you. I am here. Always.

  5. WHO GAVE YOU SNARK??? HOLD MY EARRINGS.

    I’m so glad that you have found a doctor who makes you feel heard. That is soooo important. I’m glad you blogged this and don’t freaking know how I missed it (so thanks for sharing it again). I love you; you’re number one! xoxoxo

  6. OMG, you are living my life. “We know you’ve got *something* wrong, we just can’t put our finger on it. But I’m up here in crappy WF with no good docs to go to. Just “Here, try this. Oh, it wasn’t working? Well, then double the dose.” I guess so now it won’t work TWICE as much? I don’t understand.

    I hope you get some relief. It’s comforting to know that someone might find some relief. If you do, I might take the chance & drive the two hours south and see. Hang in there. 🙂

  7. Neurologists? A good one is worth her weight in gold – or more than that, if she’s petite and slender, like my favorite neurologist. I looked at my mom after my last hospital stay and said, “Aren’t we supposed to switch roles, and I start taking care of you?” She didn’t laugh. But the neurologist? When she turns up in my blog, she’s Dr. Shoes because she has an awesome and amazing shoe wardrobe.
    I hope you’re making progress and feeling better, even if little by little.

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