I really thought I was finished with the diagnostic tests. Not so much.
I called my Doc today to report a possible reaction to the new medication. I am fairly disappointed in this development. I have been on the new med for almost 2 weeks. I was really hoping to be able to switch and ditch the nasty side effects of the other drug. But, that is not the case. I woke up with a rash on both feet. It isn't bad, but the Doc told me that if I have any signs of a skin rash to immediately stop the medication and call him. This medication can lead to some serious illnesses if there is a reaction. I prefer NOT to have any issues with the title of necro-. I will continue the 500mg of Keppra XR and discontinue the Lamictal. Bummer. But, good that I won't have to worry about the skin on my feet dying. (Dramatic appeal, but still true.)
While on the phone with the nurse, I discovered that her concern was more for another diagnostic test than to deal with this reaction. Apparently, another Doc in the practice reviewed my other tests and wants to have me do an ambulatory EEG. I also learned that the other Doc is more of the Epilepsy specialist. Question: Why didn't I see him first? Or, at least on the last visit? I mean, it was part of my initial visit when I told them I had Epilepsy as a child.
Anyhow, this AEEG did not bother me earlier. But, now that I have a few minutes to think, I find this somewhat unsettling. I also Googled images of this. Not good. So, basically I will go in at 11am on the selected date for them to hook me up. And, by "hook me up" I mean they will attach 16-32 electrodes to my head to record my brainwaves for 48 hours. I do not get to shower. I also cannot chew gum or eat anything crunchy. Oh, and no scratching the electrodes. One more, I can't let anything bump me. Riiiight. I have a 2 1/2 year old. I can forsee 48 hours of hell in my future. I better bring out the good deodorant. Although, logging every moment of my day's activities will be amazing. I have been thinking that maybe I should have Dominic go spend the night with Debbie or maybe I should go stay with my Mom. But, I think it is best to have that thing record my regular, daily life.
Of course, there are those folks who have bad experiences with things. And, those are the ones we read about on the internet. Doc's hate us internet self-diagnosers. Sorry, Doc. It is what it is. With the way healthcare is, we are forced to get our info from other sources. It isn't like I can call up my Doc and ask him myself. It isn't like I can totally trust his nurse (who has proven that she isn't all that responsible for relaying the correct info) to relay important info. I sometimes wonder if healthcare employees are so overworked that they just become numb and complacent? My brain may not be all that important to them. Telling me about one drug, when I actually take another, may not be a big deal to them. But, it is to me...it is to my child. And, THAT is what has me a little freaked out (and kinda frustrated) about all of this.
This "issue" has caused dramatic changes in our lives. It is not easy for us. In fact, it is quite difficult for all three of us. We are all making sacrifices right now. And, we try so very hard to make the biggest sacrifice so that our child does not have to sacrifice his time as a child to deal with his Mother's "issues." But, he is.
I can tell you this. When I am able to drive again, I will be sure to seek out those who have these issues too. A couple of hours out of my day once in while could make the biggest difference to someone and his/her family. I think about those people who have been there to help us. It is hard to accept help. It really is. But, it is much harder to ask for it.
I am thankful for people out there like, Glenn Fenster. He is cycling this country to raise awareness. AMAZING. Check out his Facebook page:
He is a hero to all of us.
http://www.facebook.com/group.php?gid=9505154026
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