“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!