Part of being a chronic (fill in the blank on that one…there are so many words that apply), is that I am naturally high maintenance. And there are three of us. I am hell-bent on preventing my children from turning out anything like me. And so, when a healthcare practitioner says, “you might want to try…,” I already have my mobile Amazon Prime app out and at the ready. This coachability is a good thing and a bad thing. It means that I have spent some money over the years trying stuff that doesn’t work. I do my due diligence (and for me, that means I read about 3 Amazon reviews and try to guess how crazy the person is). Most of the stuff I have tried lately has worked. Some, not so much. But I will tell you all about it in the new category of my blog I am naming
$&*% Things I buy.”
Here is an example of this list I bought today for trial and why. Most of these were based on recommendation from Dr.Clair Francomano, Director of Adult Genetics at the Harvey Institute for Human Genetics at GBMC, who I met with yesterday after waiting over a year for an appointment. If you have been keeping up with the EDNF’s posts at all, this is the brand new chosen site for research by the EDNF, and she is leading the way. She is amazing. Truly: if you need a hypermobility consultation and have the ability to travel to Baltimore to see her, please do. it was an incredibly positive experience. She finally gave me a proper EDS diagnosis, after another doctor failed to, even though he is supposed to be an expert in this field. (Please do not go see Dr. Howard Levy at John’s Hopkins. It might be a waste of your time.) But I digress…
1. Compression gloves: These are designed for people with arthritis, but will work to keep my hypermobile finger joints in place while I am doing stuff. Also, my hands are always freezing, and this should improve my circulation. I bought this pair because, well, they were grey and will go with more of my outfits. There is a cheaper pair at JoAnn Fabrics in brown. I have tried something like this before, but the lack of individual fingers and the one attachment between the first and middle finger cut into my skin and was very irritating. I ended up pulling at it all day, and it left an angry, red welt.
2. Compression Socks: Dr. Francomano didn’t recommend these, but “customers who bought the gloves also bought…” and my feet are always freezing! It’s worth a try. I’m getting some varicose veins in my calves that are not pretty, and I’ve already had one vascular doctor tell me he would not touch me unless the varicosities were life-threatening (easy scarring…no cosmetic surgery for me…)
3. Ergonomic writing supplies: This is a very big issue right now, especially for my son. My daughter seems to have little trouble keeping up with her school work, and only complains of mild hand fatigue with extensive writing. My son, the Lefty, wipes out after about 30 seconds, and his accessory muscles take over, according to his OT. It is the source of a lot of frustration and temper tantrums in our house. He now has a 504 Plan and a keyboard he uses to do much of his classwork. The school also bought him this awesome stool to help him develop a stronger core, which will strengthen his neck and arms, which will keep his hands going longer. In the meantime, no one had really talked to us about modifying his writing implements to make it easier for him to grip his pens or pencils. Dr. Francomano (cue shaft of light! cue music!) suggested the Pen Again. I don’t know if he will like it/use it, but I will do a follow up post to let you know. I also have already bought 5000 pencils/colored pencils/crayons for school, so, what to do about that? While I was on Amazon (really, if you aren’t on Amazon Prime, what are you waiting for??? It is the BEST!!!!), I saw this cool looking gripper that will relax his hand and reduce fatigue. Again, don’t know if it will work, but these are not expensive items, so it is worth a try. “Peggy from Indiana” said it really helped her with her arthritis, so that’s got to count for something, eh?
The reason I sound like a walking ad for Amazon (I do hope they decide to advertise here! And give me money…that would be nice…) is because most of these things are not available in stores. Dr. Francomano very innocently told me I could get these writing supplies “right at Staples.” And me being me, I threw my kids in the car during rush hour and drove over there to have the employees look at me like I had three heads. “Maybe you can get them on our website, but not in the store.” Of course not. Why would you sell products in your store that over 50 million people would need? (I made that statistic up based on the number of arthritis patients in the US, plus all of the other people who would need modification. It’s, like, a lot).
So, there you have it. Tune in next time for another helpful (hopefully) installment of
sh stuff I buy.