Thank you, Dab and Barbara! I don’t get emotional but you guys make me want to tear up because I am so used to being dismissed and never receiving support from people. *Internet hugs!*
I’m trying to learn what I can and Dr. Driscoll as well as all of you lovely folks are such a huge help.
I’m on my second day of Zantac 150mg and it is going well. I have been able to actually lie down and attempt to sleep at night when I typically was kept awake all night with horrible burning and being stuck in an upright seated position. Fingers crossed it continues to go well. Nexium started out okay but definitely was not the right medicine for me so I hope that, since Zantac approaches stomach acid in a different way, I will have more success with Zantac.
I also got one of those travel pillows that wrap around the back of the neck and oh my goodness that has had a bigger impact than I thought it would. The back of my head and neck having support has seemed to (at least slightly) ease the constant headache I have back there. It reminded me of when I was younger and I would sit on a bean-bag chair. I would settle into this super comfortable position that would support my neck and it would cause me to pass out for a good hour and a half. I never could take naps and yet that bean-bag chair would cause me to knock out for a full REM cycle no matter what. It was the best rest I had. I keep trying to find a way to recreate that. If I sat in a bean-bag chair now I would probably not be able to get back up.
I came across all of this EDS stuff by chance just a couple months ago when I was looking online for finger splints. I can have absolutely excruciating pain in my finger joints that require them to be completely immobilized. All of my fingers bend farther back than they are supposed to and without any effort at all. I didn’t realize that I have always held my pens and pencils more tightly than “normal” folks. The tip of my fingers can bend back over 60 degrees so, in order for me to hold on to anything, I have to have a very tight grip on it. It even resulted in a big corn or callous type thing on my middle finger from the constant pressure and rubbing. I recently started wearing Oval 8 plastic finger splints made by 3PP. What a difference! My joints are actually held in place! I put one on the end of my index finger and it completely alters how I hold a pencil. It’s like I have to learn how to write all over again.
In my newbie research, I see over and over and over again how many people suffer from the same issues. I know I am preaching to the choir when I say I just don’t understand how doctors don’t see it or are not willing to look deeper. That first neurologist I saw screwed me over too because 3 other neurologists refused to even meet with me after that. I tried to go with what I thought was an easier path since I so obviously have Essential Tremor and tried to meet with a neurologist who specializes in movement disorders and Parkinson’s and ET specifically. His office didn’t even bother to call my doctor back and an entire month went by before my husband and I were able to get a hold of them on the phone directly. The receptionist said that doctor refused to see me because he “really only works with Parkinson’s.” And yet what do I find on Youtube? A video posted only 4 months prior of that doctor discussing Essential Tremor. They lied to me. And if he didn’t want to treat me then okay that’s fine but they could have given me the courtesy of saying so from the beginning. I spent a month researching doctors and picked him and then another waiting. Two months spent on that man when I could have been trying to find another doctor who isn’t a butthead. 😛 Fortunately my PCP is pretty decent and seems somewhat familiar with odd conditions. That first neurologist definitely did not help my concerns about being dismissed. It took a lot for me to ask for help. But I shall not be broken! I haven’t broken yet and I am not going to start now. I know I deserve to be treated better even if other people don’t seem to agree. And all of you lovely folks in this community contribute to making the world a better place every single day. Giant internet hugs for everyone!
du