So it's been an interesting week, in the ancient Chinese curse form of the term. So if you're interested in the ramping up of medical issues, join me over the jump. If not, You can just hop down to comments and tell us what your plans are for the weekend.
As you can see by Itzl's concerned look, this group is for us to check in at to let people know we are alive, doing OK, and not affected by such things as heat, blizzards, floods, wild fires, hurricanes, tornadoes, power outages, or other such things that could keep us off DKos. It's also so we can find other Kossacks nearby for in-person checks when other methods of communication fail - a buddy system. Members come here to check in. If you're not here, or anywhere else on DKos, and there are adverse conditions in your area (floods, heatwaves, hurricanes, etc.), we and your buddy are going to check up on you. If you are going to be away from your computer for a day or a week, let us know here. We care!
IAN is a great group to join, and a good place to learn to write diaries. Drop one of us a PM to be added to the Itzl Alert Network anytime! We all share the publishing duties, and we welcome everyone who reads IAN to write diaries for the group! Every member is an editor, so anyone can take a turn when they have something to say, photos and music to share, a cause to promote or news!
Ok, we do have a diary schedule. But, when you are ready to write that diary, either post in thread or send FloridaSNMOM a Kosmail with the date. If you need someone to fill in, ditto. FloridaSNMOM is here on and off through the day usually from around 9:30 or 10 am eastern to around 11 pm eastern.Monday: BadKitties
Thursday: art ah zen
Saturday:Dave in Northridge
I started having some major seizures Tuesday night during dinner, but they settled down a bit towards bed time. Wednesday I seemed to be doing ok, until we were on the way to the grocery store and they started again. But still, they were just my 'normal' twitch for a few seconds then stop for a while before they started up again. We got home from grocery shopping, got everything put away, and Caedy went out to lunch with a friend. Bit and I got the dogs fed and walked and settled. My other half was reading at his computer (or at least that's what I thought, turns out he fell asleep), Bit went to her room to read, and Draco had finally gone to sleep after a long night of insomnia and pacing. So I settled at the computer to browse DKos and watch some videos.
That's when things went sideways. Suddenly I had a Sophie plastered to my legs and the seizures began. This time it started with an absence seizure, I was here, but I couldn't move and I couldn't focus my vision, I was just staring blindly at the Dkos article on my screen. Then the full seizure kicked in, my mouse and several other things went flying off my desk (not my laptop, thankfully). Morgaine thought the desk banging was someone knocking on the door and started barking. FlDad had his headphones on with his book playing and was half asleep and just shushed her. He can't see me when I'm sitting down here at my desk.
I don't know how long later I finally came out of it and managed to half walk, half crawl over to the sofa and get myself tucked against the back of it in a safe position on my side. Which was a good thing because I seized mostly constantly for the next hour or so, with only a few seconds break in between. I was completely non-verbal at this point, I couldn't make any noises though I thought them a lot. Sophie stayed curled up against me, afraid to leave, since she was keeping me from falling off the sofa. Morgaine kept going and 'tagging' FloridaSNDad's leg, but he was asleep by that point and didn't wake up enough to figure out why she kept nosing him. He's going to have to learn to listen to her signals better!
Caedy finally came home from lunch and found me on the couch. (It was almost 2pm at this point I was told, which means I was seizing for over an hour) I was still seizing and unresponsive. She thought I was asleep and having seizures while I slept. I wasn't. I could hear her.
A little later, the breathing issues started. My asthma has always had an exercise induced component, and the seizures had started stealing my air by this point. I wasn't able to catch my breath in between. Sophie became more frantic, scratching at me, nosing me and whining. Caedy and Dad couldn't figure out how to get me to take the inhaler while I was seizing and I finally got control of one hand. I managed to spell sign "call sos" and they got the message and called the ambulance.
We're going to have to work on a better alert to get someone's attention when these things happen. I'm not sure what that's going to be yet. But for a while there I was honestly afraid I was going to die on the couch before anyone noticed anything was wrong, or while they were discussing what they were going to do. This is new for all of us at this point, and unfortunately I'm the one with the good "emergency head" and they're used to relying on me to be able to tell them when I need to go in. It seems that isn't always going to be the case any longer, and they're going to have to develop some new skills.
By the time the Paramedics arrived I was starting to come around a little more. I could talk, very softly and with little air because I was still wheezing a lot, but I could respond more except during the seizures themselves which were spacing out a bit. They got here just before 3. We managed to get me into the ambulance, and they even got an IV in between seizures. They started a breathing treatment and we were off to the hospital.
Two more breathing treatments there, ativan to calm the seizures, solumedrol to kick the copd in the behind and get my lungs opened up, IV fluids, a CT scan, an EKG, and an Xray later... interspersed with several seizures that had nurses and doctors running into the room frequently... The ER doc was shocked that everyone had been passing the buck on putting me on a seizure med of some sort, despite the fact that I'd seized before in front of several other doctors from PCP's to ER docs to Pulmonologists. Granted I have an appointment with a Neuro... in November.. .that was set up last April. But still, she said they should have been trying something in the meantime. Especially as they've been getting worse and I've been losing the ability to speak and sometimes breathe during them.
So, at 4:30 I was home again. Diagnosis reads: COPD Exacerbation, Acute Bronchitis, Epilepsy. So we've got to go to the pharmacy today for antibiotics, more prednisone (to come down off the solumedrol), and an entirely new pill called Carbamazepine (Tegretol) XR. I called the medicaid hmo yesterday and they DO cover the seizure med in full. I didn't want to get there and be surprised by a bill I couldn't pay (though goodRX has it listed at $62 for the dose I'm on, still that's money we do not have right now). So if there's any trouble I have them call the insurance, because I have it pre-approved.
On the bright side this drug is also used to reduce nerve pain, which means it may help with the fibromyalgia as well. I can hope, right? The down side is the list of potential side effects are huge, with a couple of big warnings thrown in for other more serious (and rare) reactions. So I'll have to watch it, monitor for things and be prepared to deal with crap if it comes up. Hopefully it will work and do what it's supposed to do at least. I know finding the right med can be hit or miss. She also only gave me a 30 day supply and I can't just 'go off it' when I run out because that can make the seizures a LOT worse. SO... I'm going to have to find a way to get to the clinic, same day appointments or no. Caedy is off next on Tuesday after today, we'll hope for some cooler weather so we can walk up. I really don't want to pay for a cab up and back, much as I love our cab company.
I've still been up and down seizing all night, enough to keep me awake but not enough to bother going back to the ER about. Hopefully I can catch a nap later, since I only slept about 4 hours here and there. I'm writing this on Thursday morning in case I can't get back on the computer later. I'll update for you on Friday if I'm able.