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The weather the last couple of months seems to reflect how the trigeminal nerve acts; the weather changes, the pain changes. Then, the weather changes again, and the pain changes again. It’s a vicious cycle and much to my detriment and the detriment of others, the weather here in Southern Louisiana does this quite frequently during the winter months, or I should say fall/spring months because we don’t normally have much of a winter down here.

I am not experiencing the T1 and T2 pain that I had before the gamma radiosurgery, but the Supraorbital neuralgia is rearing its ugly head and has been with all the nasty weather changes. The sinuses on the right side of my face put pressure on the nerve right above the eyebrow and the pain extends to the hairline above and to the right side of my face (1/4 of my face). When this happens I can only wash 3/4 of my face and it makes washing my hair difficult, as you might imagine.

While showering I hold a folded washcloth above my eye somewhere around the hairline. I approach my head carefully because any movement near my face or movement of my hair causes excruciating pain so it takes a delicate hand to do this. Although my husband installed a gentle rain showerhead, the water and any trickle of water down my face will cause loads of pain, so I have to be very careful. There is no such thing as hop in/hop out of the shower for me. Once I have figured out this step (because the pain can shift overnight and what worked one day may not work the next) I wet my hair. Then, I take the cloth away to grab the shampoo and wash my hair as gently as I can. The pain caused by the mere movement of my hair over my scalp/nerve is enough to make a grown man cry so I have to be very careful. After I wash my hair I place the cloth back on my face and rinse very carefully. It takes a while.

Last year when the pain was bad, I found it impossible to wrap a towel around my head, even loosely. I was looking at Instagram and came across a turban-type towel and ordered one from Amazon. It has been a lifesaver. It is soft and barely there and has helped tremendously. Have you ever had an itch you can’t scratch? Yeah, me too. On my forehead and more times than I can say! That itch just doesn’t get scratched and that can drive you crazy!

Because my sinuses aggravate this nerve, my doctor told me to double my sinus meds which I wasn’t too keen on doing. The pain won out and I decided to double my dosage. The first time I tried one pill in the morning and one pill at night and I didn’t find it helped so I stopped that nonsense. When you have to take as many meds as I do, one more can just irritate you. This week I decided to add 1/2 pill to my normal nightly dosage and I’m not sure if it’s helping my sinuses because I’m still in pain, but I sleep like the dead so at least I wake up rested!

The only other thing I can teach you about Supraorbital Neuralgia is you can’t be very active most of the time. While walking, when my foot hits the floor, no matter how softly I try to walk, it will send shock waves to my face and I sometimes have to stop mid-stride for a second or two or three. Oh, and the wind is not your friend. It’s been windy here as of late and I’ve been stuck inside on a few beautiful days. It’s frustrating and what is more frustrating is I’ve had people tell me, “just put a hat on”. Yeah, you can have my pain and you can put a hat on. Then, let me know how that works out for you (facepalming here, well, thinking about it, can’t do it – pain.) And, (didn’t realize how many more things) I can’t wear a mask, not that I go very many places. It just so happens, my husband has had a few doctor appointments lately and Ochsner Hospital has gotten really strict with their temperature/masks mandates. I have been able to hold my mask to my face. I put it on last minute, step up to the little screen for a temp check and then take off the right side and just hold it up. Once we are in the doctor’s room, most will understand and let me take it off. Due to having Leukemia, I stay isolated so I am not much of a risk. They are to me and they seem to be comfortable with me not wearing a mask. Thank goodness.

What is sad is the fear that some people have when they see me without a mask. I use our Ochsner Pharmacy because I can drive up and call them and they will bring my prescriptions out to me. The little guy who brings them out (I’ve done this twice) has such a look of fear on his face and almost throws my meds at me. I don’t know if I should laugh or what. By rights, since I am the one with Leukemia, I should have that look on my face. He has a mask on.

I don’t like the fear factor that is being used by the media and some politicians, and let’s face it, other people who get downright violent about it. I know the virus is real and it has been really bad and deadly for some people. Most of my close friends are either nurses or physician assistants and I hear the stories. But the flu has disappeared. Mind-boggling. I trust God to keep me safe and when it’s my time, it’s his plan. I don’t go out of my way to expose myself to anyone and my husband is very careful. He quarantines my mail, he washes all the groceries, and then still quarantines some of the products. I find him wiping down chairs and doorknobs and no one has been here. I am as safe as possible.

We traveled to Colorado for two weeks last July and I did not come in contact with anyone. We have a travel trailer and we are self-contained and the only time my husband got out was to gas up. Even the campgrounds had remote check-in. We skipped the crowded hikes and found little out-of-the-way places to walk. We drove on beautiful highways and up mountains and down and had a lovely time and we never felt unsafe. I refuse to live in fear. I am cautious, but I will not be controlled or live in fear. I lived like that for many years and I won’t do it again. Everyone needs to make decisions for themselves and I feel that common sense rules. So be safe, be cautious, be smart, but don’t live in fear. We are going to die at some point, but until then, live.

Have a good one!