With this post, I'm requesting input from our readers. I generally try and keep things fairly light, and mainly talk about things like the fundraising, and the more serious seizure activity, but Rachel also lives with what was once a very debilitating panic disorder and it still rears its ugly head on occasion.
For example, yesterday she was having some trouble with one of the metal bands she has on a molar, used to anchor her braces and future appliances. We made a quick trip to the orthodontist to have it checked out, and he found that there was some bit of food stuck up in the gum, which couldn't get out on its own because of the band. He had to use a tool to dig up in there just a bit, which was painful, and caused Rachel to have a panic attack.
Now, there are some pretty specific and detailed things that go along with one of these attacks, and they're not terribly glamorous. Fortunately, this one wasn't as bad as some she's had in the past, and was over in about 5 minutes with the help of some meds I carry with me at all times. We both felt bad for the orthodontist, who kept offering water, juice and treats. Rachel bounced right back, but he may be scarred for awhile.
There was a time, just a year or so ago, that she couldn't go into a large store without having a panic attack, and needing to leave immediately, or have a full meltdown right in the store. I can't tell you how many times I had to leave a cart full of groceries, or only pick up the most needed things, just so we could get out of the store quickly.
I guess my question is how much detail do you want about these things that Rachel lives with? Are you at all interested in what it's really like for her when she has a seizure and/or panic attack, as they do often go hand in hand? We very much appreciate your interest in our blog, and your continued support for our efforts, but wonder just how much you really want to know about our life, and Rachel's conditions.
We know that the dog she'll be getting will be trained to respond to the seizures, and we hope that it will also be a comfort to her, and her anxiety will be reduced, but there's no guarantee of that, of course.
All comments are moderated, and I won't post yours if you request that I not, but I would very much appreciate your input on these matters. As always, thanks so much for your caring and support.:)
-Kelly
Of course, the most important part of the equation is 'how much is Rachel willing to share', with the realization that nothing on the web ever really goes away. That being said, it's your blog and whatever is both cathartic to you/her and of benefit to the purpose of this blog is what should be shared, IMO.
ReplyDeleteI will add that there are a lot of people out there that deal with both neuro and psychiatric issues that suffer in silence because they feel like NO ONE else goes through what they do, and therefore they are horrified at the very thought of telling anyone what they deal with. I know this because I was one of them. I went through an extremely severe experience following the birth of my first child that was beyond anything I ever thought possible and never told a soul until 5 or 6 years later. It was horrifying. I thought I was a terrible person. I thought I would lose my children if I told anyone, it I reached out for help. I was NOT A TERRIBLE PERSON, as I finally found out- I had a condition called postpartum depression secondary to postpartum OCD. If I had ever read of someone experiencing symptoms like mine, maybe I would have felt less alone and maybe I WOULD have reached out.
And then I went through the same with the seizures, experiences so bizarre I felt like I had to be losing my mind. Simple partial seizures will do that to you....!!! It wasn't until I started to learn about seizures when my daughter was diagnosed that the pieces fell into place... 'this happens to other people? You mean I may not really be crazy?' Shared experiences of others can be a powerful thing.
ReplyDeleteYou may publish both of my comments, edit the first if you want if it's too long or combine them- I split them up to seperate the mental health from the seizures.... I'm glad Rachel is willing to share so much of herself, I have a hard time with it myself sometimes. Not because of stigma, but because it is so deeply personal.
Rachel has always been very open about her seizures, and panic attacks are very hard to hide, so she's used to people knowing about them, too. Still, I will definitely be talking with her about this, and won't post anything she doesn't approve in advance.
ReplyDeleteThank so much, Harriett for chiming in, and sharing your own experiences. It helps us so much to have friends who have been there, both as young women, and as adults. We need to know that Rachel can live well with epilepsy.:)
Rachel has an incredibly healthy view, one I certainly did not have when younger. Part of it was the times- much has changed, and for the good, over the last few decades. My parents were raised with a VERY different perspective when it came to health issues in general, mental health care was a very different thing and something never discussed, and even my own pediatrician did not recognize my seizures for what they were during the one time my parents saw enough to be concerned. My change in view when it comes to expressing myself and even accepting myself for who I am- and who I am includes struggles with depression, anxiety and epilepsy- has taken a long time and a good deal of therapy, and I don't see that changing anytime soon. But I don't want to raise my children to feel anything like I did back then. I want them comfortable with who they are, and that includes, for all of them, health challenges to varying degree.
ReplyDeleteI spoke with Rachel about all of this, and she said I could share anything that happens, as long as there isn't embarrassing detail. I wouldn't do that, anyway, but I'm glad she's okay with people knowing about what it's truly like to live with seizures and panic attacks.
ReplyDeleteWe certainly hope that by sharing Rachel's experience, somebody else will come to understand that they are not alone. Everybody has their own struggles, and if sharing ours helps, then that's what we'll do. -Kelly
I have to agree with what Harriett said...And if Rach is okay with it then share as much as you feel comfortable.
ReplyDeleteKnowledge is power, and if it helps someone else more the better.
I know Rach would like the idea of helping others.
Thanks, Lis.:)
ReplyDeleteI wholeheartedly agree with the comments above. Coming to grips with one's disablity is hard to do, but in my mind is very healthy. We are who we are, and the sooner we know about it, the better we can deal with it. I'm certain that a service dog will help with both of these issues. Many people with PTSD find a dog VERY beneficial in dealing with their own anxieties. I congratulate not only Rachel, but your entire family on the courage to share personal issues. Someone, somewhere is going through the same things, and your sharing this helps them understand that they are not alone, you'll all serve as an inspiration to them. Keep up the good work, and I hope your fundrasing is going well!
ReplyDeleteThank you, Brian! Going forward with our updates, we will include more of what Rachel experiences with her panic attacks, and how they affect her life. I will continue to keep details general, so as not to make anyone (including Rachel) too uncomfortable.
ReplyDeleteHI Kelly! Kudos to Rachel for agreeing to share her experiences.. and yours as well! I suffered for many years from severe panic attacks.. to the point where I became agoraphobic! Then I was also dealing with Irritable Bowel Syndrome..that was horrible.. one of those "things" that you don't discuss with people. Knowledge is power! What I was going trough, no one really understood because not much was said about these conditions! The more we share, the more we can help someone else deal with these issues! ((((hugs to both of you))))
ReplyDelete(((Kathy)))
ReplyDeleteThank you so much for sharing your history! Rachel was very close to being agoraphobic when we finally decided to get real about treatment, and she got therapy and meds that have made a huge difference.:)