Written 2:35am Jan 16
…Not a tingling sensation, a freezing cold ice sensation, in one localized spot on my head above right ear. Waking up because of that sensation. Seconds before that my mind had made a dream of it. I woke up from that dream because of that feeling. In the dream I was icing my head and I couldn’t get the buffer towel in the right spot. That feeling of having ice directly on your skin is what woke me up. So I awoke, and it was real! There was no ice in bed with me of course, but the feeling of having ice directly on my skin in this one localized spot (3” oval roughly) was real after I woke up! It faded away over the next five minutes after sitting up, but was extremely strong at first. Again, not tingling sensation, but the feeling of ice directly on skin. It was obviously a tingle, I know that, but just to get the point across it felt extremely ice cold.

I think this is another example of the over reacting sore pain I’m getting in muscles from any given minor muscle use. Another example would be just sort of leaning over on my right side to get my phone off my bed table to send a quick message. While leaning on that side for about 10-15 some crazy weird random spot on my arm will start hurt from it. So I adjust right away when that starts but then that pain will last 20 minutes sometimes. Where in most people you would usually feel that pain, adjust your position, and it would start to fade away right away. Is it just the minor things that happen to us all everyday. If something starts to minimally hurt you change your position or stop doing what ever it is you're doing and that pain goes away. I'm talking basic natural instinct, cause and effect type stuff here. Just normal reactions in your body. Mine suddenly seem to not be doing that. Those pains slowly get a little worse after I move out of that position and then stick around for 5 to 20 minutes after. Another example is the hour long exploding cheekbone pains that I still get after eating chewier foods like pizza or a sandwich.

Ibuprofen has no effect on this stuff. I took my scheduled dose a half an hour ago when not much was happening to me. 30 minutes later there’s a lot of pain suddenly starting up. But I take that on a schedule specifically as the doctor recommended. The random (in all due respect) voodoo pains still persist throughout each day. 

Updates on rheumatology appointment to be posted here later. Thank you guys again for everything. All your support and love and generosity will help us get through this.

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Rheumatology visit summary:

Since all prior tests have come back negative, he’s clueless. He’s starting me on methotrexate. Ordered labs (AVISE CTD), and there’s nerve conduction test scheduled for Jan 28. There’s also an appointment scheduled for nuclear medicine on Jan 30 and that looks like it’ll be the full body joint scan. And he wants me to see a neurologist as soon as possible but I could only get an appointment in July. It’s been a pretty serious pain day getting to Baton Rouge and back for this appointment. Daily life, which doesn't include much at the moment is extremely hard. I have plans to try to start making a few skateboards tomorrow to get a few of the first orders out, I know it's going to be extremely hard but I'm gonna try power though it. The nerve and random deep pains suck but every tiny little thing I do has an immense reaction in my muscles as if I have been doing whatever it is for hours on end. That’s it. Thanks for listening to this again guys and thanks for all that you all have done for me.

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