In case I forget.

Forever and ever, amen.
November 19, 2007, 10:16 pm
Filed under: Dr. Neuro B, Husband, Memory, Mental Health, RX, Seizure

That’s how long it feels! Not that I don’t think about you. I do. But I thoughtfully avoid you. On purpose. So. To catch up.

Yep – went and saw Dr. Neuro B lo so long ago. Husband went with. Dr. Neuro B wasn’t thrilled that I had quit the Topomax even though HE had told me it was OK TO DO IT (hello???). He put me on Zonegran. Said come back in six weeks. This was after we discussed “alternative” therapies. And I was pretty clear that I thought cutting open my brain is pretty much over kill at this point. The three of us agreed. Dr. Neuro A insisted that I do a sleep study because he thinks that lack of good sleep in contributing to the ongoing lack of total seizure control. I agreed to do that. WooHoo! Another drug!! Lucky girl, I am.

Sleep study! WooHoo! Glue a bunch of stuff to my head! I have long hair! Make me sleep in clothes! Now my goodness THAT was weird. Make me sleep on a bed with a plastic cover. Oh yeah this is a realistic study of how I sleep. Oh yeah. Results came back that I do not have apnea but that I have hypopnea. Apparently I don’t take deep breaths when I sleep and my oxygen level drops low. So I go back for another study. He wants me to start using a CPAP machine. Oh, this I can’t wait for. I sleep with my face smashed into a pillow. THIS IS GOING TO BE FUN BOYS AND GIRLS!!

I went back two weeks ago for the Zonegran follow up. Not much has changed. He doubled the dosage to 200mg a day. But this time he pretty much pissed me off. I felt like he put me in a box. I had my left ankle wrapped, I was using my cane, and I had a bunch of sores on my foot below the bandage. As he was walking out of the room he said something like “if you took better care of yourself you wouldn’t have that sort of ankle weakness and those lesions are a symptom that your diabetes is out of control”. Hey doc, why not just put me in a fucking big Box of Assumptions??? I told him, no, that actually my ankle is wrapped because I torn a ligament and that the sores on my foot are not lesions, that they are mosquito bites I got out in the woods with my husband using his telescope looking at a comet. He had nothing to say to that.

I think maybe he’s getting to the point where he isn’t happy with me as a patient. You know how some doctors get unhappy because they feel like a failure because nothing they’re doing is working? I wonder if that’s where this guy is. I’m thinking about looking into the epilepsy center over at Baylor. I’m supposed to go back to see Dr. Neuro B in another five weeks and I’ll take his temperature then.

It’s almost Thanksgiving. I’m going in two days to get my CPAP machine. It would be great if it helps. They say bad sleep makes depression worse, and makes seizures worse, and makes memory worse. Would not it be too cool if this would make all that better?

The Ritalin is pretty cool. I forget to take it most days but I try to remember to take it at least in the mornings. It helps with my energy obviously (hey – speed helps me have more energy – isn’t that amazing?) and I think it actually has helped with my depression. The sex? Hmm. Maybe a little bit.

The Husband and I are working together to make the whole “Dump on one another equally” thing work. We had a huge blow up fight a few weeks ago. We never fight. Turns out maybe we should. We said stuff that apparently we should have been saying for a long time. It comes down to  I don’t want to dump my stuff on him because he has so much crap already and he doesn’t want to dump on me because I have so much crap already. He’s afraid that if he dumps on me that I’m fall apart because I’m so “fragile” and I’m afraid that if I dump on him that he’ll just be pissed off at me at that makes me so scared. So we’re working on it. We had our 6th wedding anniversary a couple of weeks ago and it was awesome.

I had this thing with my back start about a year ago – this sharp horrible pain about 2/3 of the way down on the right. One specific place, doesn’t move, doesn’t hurt except when it hurts. I can be sitting here and it doesn’t hurt at all but then I can move or twist a tiny bit and damned it’s horrible stabbing horrible. When I went to Dr. PCP about it a year ago he gave me Soma and Vicodin and it helped ease it for a while. It’s never gone away but it’s never been that bad again. It’s come back and it’s bad again but not THAT bad. He wants me to do physical therapy and I’m going to go do my evaluation for that next week. Hope that can help some. I’ve been popping a Soma and night and a Vicodin in the morning. The Soma leaves me groggy in the morning. The Vicodin works great during the day but neither are the answer. I got the name and number of a theraputic masseuse from a friend and if the physical therapy doesn’t do the trick I’m just going to go with the massage. Can’t hurt, right? RIGHT?

I’ll try to be a better blogger. I promise.


F. X. Or? Z.
April 21, 2007, 10:36 pm
Filed under: Counselor A, Dr. PCP, Fear, Husband, Memory, RX

Well I can’t tell you how much I hate to say this, but Effexor appears not to be horrible. I have to admit this – it’s helping. I hate that because there is this stubborn stubborn person (me) who, regardless that I know it’s crap, just hates that I can’t will myself not to be depressed. I KNOW depression is a disease and that if my leg were broken (again) I couldn’t will it to get better so it makes no sense for me to expect myself to be able to will  myself to not be depressed but STILL. You know?

So it’s helping. And I’m grateful. But it still pisses me off.

AND. I think that seeing Counselor A. is helping, too. The two things we’re working on are:

1.  Get In and Get Out

2.  Choice: Victim or Working Through

I guess those should actually be in a different order.  A couple of weeks ago we were talking about the choice of going to a therapist to address the crap I’ve got in my head because of this accident and this injury and all the stuff that it has lead to. She talked about two examples of clients she has had who had been raped. She said one had come to therapy and worked through her trauma. The other had chosen to just plow forward and try to deal with it all by not necessarily denying it but by just going on. I don’t remember the exact point in the conversation but at some point I said, “Choosing to not let the rape define her.” I’ve thought a lot and I mean a LOT about that statement. Last week with Counselor A. I asked her – it that what I’m doing? Am I choosing to let this trauma define me and is that why I can’t get past it? Is this something I’m doing to myself? Her reaction was very strong in the negative. She said on the contrary that, by choosing to address what’s in my head and try to work through it that I am choosing NOT to let it define me. She said that she thinks this is a choice of courage. I’m doubtful that that is true, but I’d like to think so. She said that some people, when the trauma is severe, just can’t plow through it. And that if they try, it comes back to bite them on the ass later. We’ll see.

The Get In and Get Out part? I’m adjusting to the thought process. The premise is that I push it all down.  Every time I find myself running this accident and all the crap surrounding it through my head, I try to get away from it. I tend to think I’m dwelling on it and fight against it, and the going theory is that this is why it’s become a “white noise” that won’t go away. Counselor A. has suggested a different approach, which is, when it comes to the forefront of my thoughts to let it be there. To pay attention and look at it both ways. And after a period of time, to choose not to think about it for a while, but to make it OK to think about it for a period of time. Get into the thoughts and then get out of them. Sounded like woo woo crap to me, too.

For example. I was in the shower one day last week and I was washing my hair. The recovery period came into my head. I started thinking how horrible it was to just try to do basic things, like get clean. How helpless I was, and how I depended upon The Husband for the simplest things. Like taking a bath. Before I would have run through the horrible thoughts – the pain and shame of not being able to clean myself, of having to ask for help just to wash my hair. But this time, instead, as I went through the process of bathing, I took each step and looked at how it was and how it is now.

Just getting into the shower was terrifying. There is a lip at the shower door that I had to hop over to get in. My husband had to brace my whole body and hold me by my right elbow. I had to hop over the lip onto the slippery tile with my right foot. It was shockingly scary. I was so afraid I would not hop far enough and that I would fall. I never did, but what stayed with me was the fear. So this time when I thought about it, I focused on the fact that I did it every time. I concentrated and I was strong, and I forced myself to have faith in myself and my husband that we could do it. And we did.

As I stood under the hot water spray I remembered how I had to sit on this plastic shower chair with my broken leg sticking out of the door. I remembered how hot and sticky my skin would get under the plastic and tape we had to wrap around my leg and arm so I could bathe. I remember again the total helplessness of my husband having to scrub my skin and wash my hair, how he had to lift my feet to clean them, and how he had to rinse me off like a baby. I was grateful but I felt weak and worthless. At first I could barely sit up in the chair long enough to get through it. I was exhausted by the time it was over and had to sleep for hours afterward.

This time I thought about how I got stronger. I remembered the first time my husband helped me make that hop into the shower without the chair in it. That was the first time I stood and tried to scrub myself. I was only able to scrub my chest and the front of my thighs, the top of my right arm and my face. I was able to sort of wash my hair with my left hand.  By the time we were halfway through I was leaning against the tile wall and my husband was basically holding me up. I was exhausted. But I got stronger. Eventually I was able to stand by myself. Then one day, I was able to be in the shower with the door closed and my husband sitting on the bathroom counter outside just so he would be there to help me in and out or if I got too tired. Finally, I snuck in there and took a shower by myself when he wasn’t home. He was upset when he got home and found out, but I felt very proud. I hadn’t told him or asked him because I just wanted to see if I could do it. It was scary and I was so tired when it was over, but I was very proud.

So as I washed my hair this time, I concentrated on how good it felt to have both of my hands working the shampoo into my scalp. When I washed my feet I thought about how far I have come that I can stand on one leg and lift my foot up to clean it, then do the same with the other. I am strong enough to do it, I have my balance so I don’t have to lean against the shower wall. Hell, I can even shave my legs!

I have come so far. I had incredible help from so many people, but I am the one who chose to make progress. The other night my husband and I were laying in bed talking before going to sleep. He was telling me about a guy who is in a sport club that he participates in. He had been out with the club that morning and the guy had asked about me – I’ve never been out even though a lot of other member’s wives have. My husband told me that he replied “She is the most incredible person I’ve ever known.” He told me that he went on to tell the guy about the accident and how badly I was hurt, how hard I worked to come back from it and how well I’ve done. I was embarrassed by all of this but also very proud that HE is so proud of me. I told him that I didn’t feel like I had done anything that anyone else would do, and that I was able to do what I’ve done because of his support and help. He said no, that he doesn’t think that if it had been him that he would have tried so hard. He remembered how much pain I was in, and how I pushed and pushed and just didn’t give up. How I kept saying “It will never be easier that it is today.” He said that if it had been him that he thinks he would have just stayed in bed feeling sorry for himself. I told him I spent a lot of time feeling sorry for myself. He said yes, but that I did it sitting up in the wheelchair working for 12 hours a day to bend my hand or in physical therapy making my legs strong so I could walk again.

I told him again that I couldn’t have done it without him. He said that he wouldn’t have done anything he did if I hadn’t asked for it. He said that every time he helped me to the toilet, or helped me into the wheelchair, every time he stood beside me as I used that one hand to wash my hair, it was because I was pushing to get better and asking for help to do so. He said that he told that guy repeatedly, “She is incredibly strong.”

So I’m working on letting that be OK. And the Effexor is helping me feel good about it.

Avoidance Is A Skill
December 22, 2006, 2:00 am
Filed under: Counselor A, Dr. Neuro B, Memory, Neuro

Yes, it is. One I have perfected! Every time I turn on my computer I see the little icon up there for this blog. And I think – I need to write there. I need to get this stuff down. You know. In case I forget? But I have been avoiding. Because it’s easy to when I’m not in a crisis, when my every waking moment isn’t spent with my head in this thing.

It hasn’t been so terribly bad the last few weeks. I’m still at Lamictal at 400mg a day. Some days seem better. Some days are very bad. The bad ones are the worst I think but then I think the good ones are the worst. The bad ones, because I feel like nothing is ever actually going to work. I feel like the whole last year plus has been one big circle of useless stress, pain, and terror that will just keep circling around and around until I decide none of it is worth fighting anymore. And the good days? They almost seem like false hope. Because every good day seems like a lie. With every good day, in the back of my mind, I am thinking, it’s just a tease. Maybe not tomorrow, and maybe not the next day, but surely the one after that will again leave me gasping for air because the burping won’t stop.

I’m about two weeks out from going back to Dr. Neuro B. I know he will up the Lamictal again, this time to 500mg. I have as much faith that it will work as I do that there will be peace in the Middle East. Baaaaah.

The one good thing going on is the new counselor I mentioned earlier. We’ll call her Counselor A. Because the three that I tried earlier this year were so horrible they don’t deserve their own letters. I’ve seen Counselor A about six times now. She is kind, empathetic, and patient. She does not presume to know what I am going through, but is interested in listening and learning. She doesn’t seem to feel like she must push me to a solution, but rather is willing to simply be there in the room with me. I told her the first time we met that I wasn’t even there for any specific reason. I told her that I know that most people go to a counselor with a goal. I want to figure out if I should leave my husband. I can’t find happiness in my job. I hate myself. That sort of thing. But I explained to her that really, I just need someone I can whine to. Yes, I have my husband. He will listen to anything I need to say but in the end, he will try to fix it and of course he can’t. So then he’ll start to feel bad because he feels that he can’t help me. Yes I have dear friends who I can talk to. One in particular is open to all of my needs and asks nothing in return because she is just that kind of soul. But there are only so many times you can cry to a friend about the same thing without feeling that you are a broken record of self pity and imposition. I tell Counselor A this and she smiles, she understands.

Now don’t get me wrong. She does try to isolate specific stressors and give me suggestions on how to approach them, asks me to consider things. For example, we talk a lot about the fear and sometimes panic that I experience trying to drive on freeways. They never ever ever bothered me before the accident. And the accident didn’t happen on a freeway. But the danger is so real, the speed is so out of control, the vehicles are so big, and the drivers are so aggressive. Even though I don’t consciously remember the accident I know my lizard brain does. When an 18-wheeler is coming at you at 80 mph, determined to be in the lane you happen to be in, and your lizard brain remembers what it felt like and sounded like to be crushed in a small metal box, to be torn apart, to have your bones broken, and your mind shut down, your lizard brain reacts when your conscience brain wouldn’t normally. The instant flush of adrenalin . Palms sweat. Heart races. Ears ring. Breaths become short and fast. It’s panic. And the truth is, it is more dangerous than the 18-wheeler.

Driving on a freeway in Houston is sort of like facing a pack of wild dogs. If they can smell your fear, you’re doomed. So we talk about that sort of thing and she gives me suggestions. Her strongest one, the one I am considering, is that I take a Xanax or two and purposely head out to the freeway. Freeway driving presents a particular problem when you are trying to use a desensitization tactic. I mean, really, you’re either out there or you’re not. So the theory is that if I can do it with the Xanax, that I might be able to train my brain to think it can do it without it. But I hate the Xanax. It is a total crutch, an admission of weakness. But I’m thinking about it.

Yeah I’m still here.
October 25, 2006, 11:06 pm
Filed under: Dr. NeuroPsych A, Memory, Neuro, RX

I know you all thought I had moved to Costa Rica, changed my name to Juanita, and started selling bananas at the docks but no, I’m still here.

I’ve seen Dr. NeuroPsych A a couple of more times. Last time we talked about neuropsych testing and I questioned what the point is. I know what is different about my cognitive/visual/etc skills now -v- pre-brain injury so I don’t see the need for my insurance company to pay $1,500 dollars so I can be told I have verbal problems, memory problems, comprehension problems, visual processing problems…

Dr. NeuroPsych A brought a bunch of dice to our last meeting. The dice were multi-sided like D&D dice. We played a game where she rolled the dice. One die had a big number on it and I was supposed to figure out how to add and subtract the numbers on the other dice to reach the big number. She demonstrated and could do it almost without thinking. I tried four times and, had I been a six year old, I would have thrown the dice at her out of frustration. Instead I just tried and tried and couldn’t do a single one. Not even close. It was like reading Sanskrit.

The burping has really improved over the last few weeks – I’m down in the 15-10% range most days. The last two days have been in the 25% and heavy range so that’s worrying. After my experience with Lamictal earlier this year when it quit working I am hypersensitive to its ongoing effectiveness. I don’t know where I’ll turn if it quits working again. Scary stuff.

Thanks to the two folks who have sent emails checking in on me.  Mainly just trying to be patient until my next appointment with Dr. Neuro B in the middle of November.

Thinking about rebuilding
October 13, 2006, 11:29 pm
Filed under: Brain Bits, Dr. NeuroPsych A, Memory, Neuro

A report on Dr. NeuroPsych A.

A pretty darned positive experience. A striking physical environment, which I might tell you about later. For now, just imagine piles of papers and magazines and file cabinets. And bright colors. Like yellow. We talked for about two hours. It was a focused, good exchange of information.

She is of the school that believes the brain can regenerate connections that are damaged because of various events, including traumatic brain injuries. She’s been at it for many decades and I liked her. We’ll talk next week about neuropsych testing. It’s something I’ve been asked by many doctors, etc., since the accident but no one has said “do this”. I’ll talk with Dr. PCP about it before I do anything of course.

The most surprising and exciting thing about my time with her was when she said, “When you see Dr. Neuro B in November, please ask them for a release form so they will send me their records on you.”

I said I would and added, “The records I REALLY want are those from the injury – the transport, ER, surgery, and inpatient records.” She said that of course they’re mine for the asking. But – I told her that the hospitals charge a lot for those records – to patients and attorneys. But if a doctor is treating a patient for the problem the records pertain to, the hospital will fax them directly to that doctor for no charge.

She said, “Great. Let’s see if we can get them.” I signed the release and am excited at the prospect of reading this stuff. Like the pictures that came to me a few months ago that answered so many questions for me, and gave me so much perspective that I couldn’t have gotten any other way, these records hold the truth about a vital event in my life. They are the only source of this information and I am itchy at the thought that I might get them. The best part – I told her I wanted to read them, highlight them, and then have someone explain to me what I don’t understand. She patted my arm and said, “Let’s get them.”

But I was THINKING the correct word!
September 17, 2006, 12:31 am
Filed under: Brain Bits, Memory

And….here come the cognitive side effects again. The last post I wrote? I proofed it four times. It wasn’t until the fifth read that I saw I had written “that that” instead of “thigh that” and “is is instead” rather than “it is instead” and a couple of other such mistakes that I can’t even remember now (yeah, there goes the short term memory).

Now, if I would start thinking food looks GROSS and get horny like a lizard, I’ll have some side effects that I LIKE.

Less Is More Better
September 14, 2006, 10:07 pm
Filed under: Brain Bits, Fear, Husband, Memory, RX

Oh oh oh I have all my Lamictal taking fingers and toes crossed. I’m at 125 mg a day now and have had about a week and a half of not horrible days burp-wize. The appetite suppression and horny like an armadillo still hasn’t kicked in but I’m hopeful!

I have noticed little tickles of cognitive problems starting to come back. I’m dancing around a little bit of short term memory problems, and I’m definitely leaning back towards over reacting to stress. I’ve had a few of the exciting electrical shocks again, this time through my right wrist which is pretty disturbing because there is a lot of metal in there and it feels hot for a while after the shock sensation. Also, the visual thing is coming back – where I’m looking at a word but not seeing it, having trouble pronouncing things I know how to say. But it is very very mild compared to the “Put Me In A Rubber Room” state that I was in on Keppra and Trileptal.

I’m thanking the big guy in the sky a lot for the improvements I’ve made, and for the great medical care I continue to be so lucky to receive, and for my husband who for some crazy reason things I’m the shizzle.

If none of this gets much worse and the burping continues to get better I’m going to try my knees out for a happy dance. Thanks to all who take the time to comment and lend support. This stuff is so freaking scary.