The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!


Acupuncture & GP Visit

On Tuesday I had my first acupuncture appointment. It was an interesting experience to say the least. The acupuncturist was the cutest old lady, and she was very sweet. She truly believes in the power of acupuncture which makes me (a skeptic) feel better.

I had needles put in my face, arms, and legs, and none of them hurt. Then she attached wires and sent an electrical current through four of them. I sat for 45 minutes while the needles were in, and a tape called “Six Bridges” played. I didn’t love the tape, it was basically a breathing exercise. I think meditation can be a good thing, but I’m not so sure it’s for me. When the acupuncture was done, she did fire cupping and then acupressure.

That night I had a migraine, felt super dizzy, and nauseous. I don’t think the acupuncture caused it, but it didn’t seem to work. Acupuncture is a process though, so I’m going to continue to try it for a little while, and if it doesn’t work, at least I tried.

Yesterday I saw my GP who I love, and we talked about whats been going on the past few months. She ordered some blood tests, which I have to get done later this week. I went right after my appointment to the lab across the street to get them done, but they stuck me four times, and didn’t get anything. They blamed it on me being dehydrated (not surprising) but I had drank a bottle of water before I went in there, and I don’t think I was dehydrated. I’m a really hard stick, and I understand that, but it isn’t impossible.

Hopefully these labs show something, although they never do, but I’m trying to stay hopeful. I’m continuously gaining weight even though I’ve been more active and have tried to change my eating habits. The weight gain has been SO rapid, there has to be something wrong. But, I guess we’ll see.

What’s going on in your life? I’d love to hear about it!

Lots of Love,



Neurology Update

This morning I had my neurology appointment with a new doctor, and it was a very positive visit!

I had mentioned in a pervious post that I was looking into starting Botox, and this doctors office is going to file a request with our insurance in the new year. She doesn’t think it will be the “miraculous cure” that Botox is for some people, because I don’t have much stiffness in my neck and shoulders, and that’s what Botox helps with most. It is however something I haven’t tried yet, and I have attempted to use the majority of migraine relief therapies available.

She was concerned that my resting heart rate is so high, and wants to start me on Propranolol.  I have been on it before, and it lowered my blood pressure a little too much, but hopefully my body won’t be as sensitive this time. In addition to the new drug, she wants me to lower the amount of Amitriptyline I take, which is fine with me since it doesn’t work anyway. I also got a referral to see a Cardiologist, which is a specialist I have not seen before, as well as a referral for an acupuncturist. In the office today my pulse was 137 bpm, which is way too high for anyone, especially someone as young as me.


I really liked that she brought up the fact that exercising is nearly impossible with a pulse that high. Instead of shaming me for not being more active she was actually sympathetic, which is not a trait most doctors I have seen have. I don’t need or want anyones pity. I just want adequate medial care from people who are understanding. Is that too much to ask for?

I’m hoping I will be able to use her as my Neurologist long term, because so far I really like her. I needed some positivity in my life, so I’m grateful that this visit went well. I am also feeling pretty good today, minus the sinus infection I have, so hopefully I will continue to feel okay for all of our Christmas celebrations.

Love of  Love and Holiday Wishes,