Wednesday, December 31, 2008
Randomization will occur shortly. (That's where I go in and the programmer either pushes On or Off). I'm looking forward to getting started - whether on or off; let's get r done.
On a healing note, the wounds are all coming along well. The generator still moves around a lot and though I suspect it is normal, is currently a little annoying.
After reading a couple of the comments, I began to feel dizzy.... LOL - kidding. Apparently some readers don't understand why I shouldn't post my thoughts about being On or Off. I can't say I completely do either, but this is a gift and if the gift givers asked me to not blog - I wouldn't at all. For now, I'll keep you updated on the physical aspects. Probably boring. But that describes my life right now anyway. Pretty withdrawn and boring.
As I mentioned before, I did turn on an email, so anyone who wants more detail can write.
Have a safe and wonderful New Year. I WANT 2009!!!! Badly!!!!
Monday, December 22, 2008
No, they won't "turn it on" for a couple of weeks and even then I won't know for sure whether it is on or not.
My fatigue - and mental slowness is back to where it was before the week before surgery. Plus there is anxiety when I think about what I've done - looking in the mirror has always been tough but it is worse now. And I wake up with a headache. I didn't take any of the prescription pain meds last night to see if they were causing a hangover effect headache. But alas, no. Just a dull headache to add to my lethargy. Hopefully that will go away after the staples come out later this week.
I'm combating the normal "sadness" by trying to stay busy on a couple of projects - none of which pay $, so I need to focus on some of that as well.
I can only imagine the attention I would be receiving if people knew the real story. I've received a lot of well-wishing e-mails & calls from people who heard about the cover story. I have to chuckle about how many of them would be recoiling away from me if they knew I signed up for an experimental depression surgery. I know - I'm probably not giving them enough credit - but having depression used against you for work and child custody tends to make you shy away from being an open book. I do look forward to a year from now when I feel like my old self, in being able to let the people who care the most about me know why I feel so much better!!!
Hope everyone has a good holiday.
Sunday, December 21, 2008
My friend heard about the cover story and called me. A friend of a friend had called him, etc. No biggie but he was concerned. I reassured him that I was fine and was never in any danger. When I described that they had drilled a couple of holes in my head, I expected him to make jokes about needing more holes in my head. Instead, he commented that I should have had them insert some wires and done that 'deep brain stimulation' thing. Hmmm.... we are connected too well.
[More cover story detail was removed from here]. I will let him in on the 'rest of the story' next week.
Here's another side thought for anyone undergoing this type of surgery - plan on wearing button down shirts, not pull-overs. LOL Every time I pull on a t-shirt it tugs at the stitches.
Saturday, December 20, 2008
The wait in the pre-op waiting room took forever. About an hour after we were told to be there, they called us into the back room. My Caretaker was more nervous than me, which allowed me to be 'strong'. As long as I didn't think about what was about to happen, I was fine.
The surgeon in training assigned to me was very nice. We started with a little 'something' to calm my nerves. Then she positioned the frame. This was excruciating. Although the numbing shots worked, the idea of someone screwing this frame into my head was daunting. When they put the whole frame on, which is like a mask, it rubbed my head all wrong. More numbing shots but it never really felt right. The MRI was done with the frame on and I asked why they did the first MRI if they knew they were going to do the 2nd. Well, the simple answer is to make sure there wasn't anything 'wrong' in my brain. i.e. if there were a tumor or something, they'd rather know before scheduling the whole surgery thing. That makes sense.
My Caretaker was allowed to be with me up until the MRI, then for awhile after. When they finally took me to the OR, the main surgeon wasn't happy with the way the frame was attached and took the whole thing off and started over again. I have to admit it felt better the way he put it on - but back to the MRI for pictures with it in its new position. (A little tedious, but they had shot me up with some good stuff so I didn't really care much).
I don't remember the surgery itself. I remember them shaving my head and I briefly remember after they were done and told me it was time to put me out and insert the generator. Everything else is a blur.
I came back to my room where the Caretaker was waiting. Luckily he had brought a video game from a friend and was able to occupy his time. I have no frame of reference for time. I started my cover story.
The GF showed up at some point and I was glad she was there. She spent the night in the room on a couch. The pain was b-a-d. Worst headache I've ever had. About every hour I got a shot of morphine and from time to time some other pain killers. I got some good sleep from about 5:30 on.
The next day, under the meds, I felt pretty darn good. They checked me over and released me. We headed home. [more cover story things] All in all, everything went fine.
Sleeping in my own bed felt good. I put off taking the prescribed drugs until I 'needed' them, but then realized I needed to stay a little ahead of that schedule. It was still very painful without the drugs.
I've stayed relaxed and on the meds for the past couple of days. [I've changed the blog to eliminate more references that could be linked just to me - about the cover story etc]
2 days after the surgery I noticed the area around the generator had gone down in swelling. At first I had thought I might get away with no one noticing it - other than the scar. But as the swelling has gone down, it's outline is very apparent. Oh well, I'll deal with that when I have to.
Also, although the pain has been fairly significant, I've noticed more pain on the right side of my head. I finally put 2 and 2 together and realized the extra pain is from where they ran the wires. It's sort of like a sinus/jaw ache on that side. I can feel the leads in my neck and if I bend my neck just right, I can feel a little tugging of the wires. Interesting. Nothing bad - just different.
So I'll throw in the caveats here - anyone who has this is going to react differently. Everyone reacts to pain differently and I'm sure some will never notice the tugging of the leads. Hopefully in a couple of weeks, I won't.
I am doing well. I am still very hopeful that this works, but mainly I'm proud of at least taking some steps to do something about the depression. Whether it's working out, journalling or counseling, taking some positive steps to manage it, feels good.
All the medical staff were very professional and quite kind. Kudos.
I go back next week to get the staples out. I'm not looking forward to that. In order to hide the staples, I've been wearing hats. Most rub in the wrong place, so I tried putting a little anbesol on the staples before wearing a hat to a Christmas party last night. It seemed to do the trick and wasn't as bothersome as the hats during the day.
All the Christmas cards and packages are now in the mail and I can relax. I took another 1/2 of my meds and plan on watching movies and chilling the rest of the day.
Thanks to all the well-wishers. Thanks to my medical team and to my really outstanding friends, the Caretaker and my GF. I'm in a good place.
Wednesday, December 17, 2008
Sent via BlackBerry from T-Mobile
Tuesday, December 16, 2008
The counselor and I talked about the anxiety and he focused me on the outcomes. He was careful not to get my hopes too high but to focus on the fact that I was doing something positive about the depression. "Go team". Rah Rah. (Sorry the anxiousness is making me snippy. Here's another brain lock - snippy isn't the word I was looking for. It will do unless I think of it by the end of this post..... the brain fog is so much fun!).
I have been doing things around the house in anticipation of being gone most of this week. Dog to kennel, etc. Mainly waiting - or trying to think up things to do instead of waiting. I loathe wait.
I had a very interesting call after I drafted the first part of this, which I will share because it has to do directly with this blog. Apparently the blog has been noticed by the people doing the study. They aren't upset, per se, but wanted to talk to me about some things about it. In particular, since this is a double blind sham study, they don't want anything to jeopardize the research. My sharing whether it works for me (or not) really doesn't help their research. I accept that and understand.
They are also concerned about getting people's hopes up (or down). If I have a bad outcome - it may dissuade someone who could benefit. If I have a good outcome - it may set someone's expectations too high or they may think they are a candidate for this but they really aren't.
They are also concerned about the anonymity. My using numbers and initials that are only in the study probably wasn't the brightest on my part.
They also pointed out that they are there for me to talk to about the anxiety or questions and concerns I have. I've probably underutilized them as a resource.
All valid points. They aren't censoring me, just expressed their concerns.
So, my first thoughts are to journal only through the surgery portion. In other words, let you know my experience coming through it. A previous blogger on DBS warned about the halo/frame they used really bothering him during surgery. That allowed me to ask about the one I'll use. I think that's useful. It would've been nice to know beforehand that I'd have the option of whether the generator is on the right or left - something that the surgeon cares about but it hadn't been mentioned.
I definitely know that Kara's input on ECT helped me to an informed decision as well as all the writings on VNS (thanks Herb and others). But both of those are accepted treatments (although neither is probably utilized enough).
As for my experiences after that, like if I really start feeling great, or if I feel it isn't working at all, I'll refrain from. After the study is released, I may have more first person commentary, but I can definitely see the point in not biasing anyone at this point. And by the time the study is released - I hope to be so carefree, my kids as well as the world will know!!! (Counselor says to keep thinking positive). And if it doesn't work for me - as I've said before - I'll find something.
The other purpose of their call was to check on me. (I won't guess as to which was more important - LOL - there's my cynicism - AND lo and behold the word I was looking for this morning - cynical). I'm not the first to be really anxious, I'm sure. Nice to hear they will be with me from the time I get to the hospital through recovery. The administrative coordinator I previously mentioned will be there as well. She has one of those voices and demeanor that just puts you at ease. She's there for you 100%, for sure. (Not that the docs aren't - but docs are docs - LOL - just letting everyone know how much I appreciate her).
Well, I think I'll go pack. My Caretaker "told" me to pack some really warm socks. Nothing worse than having cold feet in a hospital bed. He's funny. The GF is more nervous than I am. Hopefully when she and the Caretaker talk tonight, he can alleviate some of her nerves.
Monday, December 15, 2008
The sleep pattern didn't change either. Can't get to sleep then once asleep - can't get up. Ugh!
I'm making sure all my affairs are in order today. Living Will & all that. (This is a good thing and should've been done before this). Previously I made letters to my kids & have updated them from year to year letting them know how much I love them & leaving them with fatherly advice - "don't get married until you're 28" etc.
I'll stick an extra note in the letters with full disclosure.
Sidenote: I read in a Dr Phil book that he had done the same but did it on video. I kind of like the idea. I'm not sure I'll get to it before Wed but its definately on the to-do list for the future. I won't want it to be a tear jerker - more of a celebration of all the good times & a heartfelt "I love you" to each of them. Maybe include a couple of my favorite pictures of them & what in the picture I really liked. My computer has a video editing software package on it.
My caretaker just called. I'm going to spend the night with him Tuesday because he lives closer to the hospital & we have to be there so early. He's a hoot. I'd love to be conscious when the doctor talks to him - he'll have 200 questions. Great friend.
I'm off to do some laundry & maybe a little work.
Sunday, December 14, 2008
For anonymous with the VNS who is calling me out on my 'story', I am struggling terribly with the lie.
I wish I was strong enough to stand up and say - "Hey - I am not weak - not really broken - just suffering from a disease - same as a diabetic - need medicine every day - and most days it's not enough". But right now I'm not. Sorry guys, not a poster boy yet. My experience with the ex, and the comments the kids have endured already is enough to shy me away. In time they will be told and make their own decisions as to whether my decision was hurtful or not.
The friend I consider a brother will see right through it and we'll talk about it next week. I don't mind him knowing, I just can't face the semi-rejection.
I am weighing all the comments seriously and thank you for chiming in.
I'll sign off with letting you know my thoughts:
Very scared - I keep asking myself "what am I doing"?
Very optimistic - woke up the past 2 days actually excited about getting up
Unhappy - about my lying
A little worried - if I'm excited during the past 2 days because of the possibilities - does that mean that "I" can control this better? The fatigue has been minimal and somewhat controllable with Starbucks. The emotions haven't slowed down though - I could cry at the drop of a Christmas ornament....
Saturday, December 13, 2008
Last night Carrie Fisher (Princess Leia) was on Craig Ferguson's show. She talks openly about getting ECT and it helping her immensely. Wow, I'm impressed. I'm glad she is. Years ago I saw Terry Bradshaw, famous NFL quarterback and announcer talk openly about removing the stigma of depression (see link here).
The stigma may be getting better each year but it is still there. (And yes I'll take my own blame for not having the courage to come out and talk about it openly and move the stigma further...)
Take one of my best friends, I consider him as close as a brother. We are there for each other no matter what. We've had our strains as well, but the strains would never jeopardize us being there for each other. Although we don't spend a lot of time together, when we do, it's just like we picked up from where we were. We can finish each other's sentences.
So earlier this year the depression was really getting me down. The fog seemed to be every day - unless I pushed the Ritalin. I investigated ECT and had decided, I need some relief. I discussed it heavily with my gf. (I think that's when she realized how much I struggle with it - enough I'd shock my brain to get some relief).
ECT requires multiple shocks during the week for multiple weeks. Obviously you can't drive yourself so someone has to be there for you. My gf was more than happy to be there, but she can't take off work that much. My friend is self-employed and could afford the time. Also his wife works really close to the hospital so she could even take me with the friend picking me up.... or so I thought.
When I approached him about it over lunch, I was a little taken back. You see, he's suffered from depression too, he told me. But he just puts on some of his favorite music and 'moves on'.
"But you don't understand", I explained, "I can't get out of bed. Or worse, I'll get out and do some things then I'm exhausted and have to lay down. But I don't sleep, I'm just tired all the time".
Friend: "I sometimes feel that way - especially if there are things I need to do that I really don't want to do. So I just don't do them. Eventually I feel like doing them so I do".
In other words, get over it. Get off your lazy butt. (from one of my best friends).
I'll take part of the blame on this one also. If I had been honest a few years back about how I felt, maybe my friends and family would see the pain and notice the declines. A word of advice to those in depression - tell your friends about it in small doses, then increase until they get the picture.
As for the friend, he was adament that he would drive me; pick me up; cover for me; take care of me; but he really didn't think I should do it. Part of that was concern over the ECT side-effects, but most of it was his own belief that I could take care of it with other means.
So I haven't told him about this one. He has my medical power of attorney and all of that, but... I have another friend who by his very nature is a care-taker. The kind that usually become doctors, nurses, psychologists, etc. A people person.
He understands depression. For him, the meds, some therapy but especially the self-help life management program I previously mentioned worked. (I've had all those and am still not there).
The Caretaker will be there. The gf will come in after the surgery, as part of the cover story.
In reality she will probably not follow the script and will be with the Caretaker after I check in. LOL. She's cute and I love her. On the one hand I don't want to deny her the feeling of being there for me from the start, but on the other hand, she can't help me while in the waiting room so she might as well stay at work for a little bit. And then the story goes better.
Just the 2 of them will know the truth. This is elective, experimental surgery. (Well one other close friend out of state knows but he won't be there and he won't tell anyone).
I'm sure the secret is safe on the internet!!! LOL.... sometimes I'm not the smartest, but, oh well.
A couple of commenters have mentioned they've had it done as well, or are in the program. If you're blogging, I wish I had a link. If you have anything you want to add on mine, let me know. (I don't understand all this blogging stuff).
And as for the commenter who pointed out how lucky I am - yes, and thank you for reminding me of my blessings. I am blessed to be given this chance. I am blessed to have 3 heart friends who will share this with me. I am blessed to have my kids who deserve a fully functioning father but will love me no matter what. I am blessed and need to keep that in mind.
Friday, December 12, 2008
First was the MRI. I was a little early and the nurse lady didn't mind. She took me to the changing room and had me get in a gown and pants. The cheap scrubs looking stuff. She didn't seem to be in a good mood and after I spilled my coffee in the dressing room, she was down right rude - even though I offered to clean it up....
Then I waited. This was the worst part. While waiting I had time to think about what I was doing and why. Why! Why couldn't I be one of the ones that medicines worked for? How embarrassing - I know it shouldn't be, but it is. And here I am waiting for someone to put wires into my brain in order to 'give me energy'. It was very depressing thinking about it. I can't explain it well but I'm sitting there persecuting myself for having to be there. Yeck.
The MRI itself wasn't much. They gave me earplugs, situated me and turned it on. I had previously decided I wasn't going to open my eyes. I've never been claustrophobic but I figured why chance it. When the lady announced I only had 4 minutes to go, I decided I'd look for a little bit. Nope - still not claustrophobic. I noticed they have a couple little mirrors right above where you can see the people in the control room. That was kind of interesting watching the people. I expected to see them highly captivated by the images of my brain flashing before them. Well - nope on that too. They seemed to be visiting about nothing in general.
I changed my clothes and they gave me my 'films'. I understand the whole MRI idea - thin slices of my brain - 20 of them per large page. But there are like 16 pages - with the 20 pictures. That's a whole lot of brain slices. (I'll try to scan a couple in and post them... LOL... That'll make this blog more interesting).
Now off to the surgeon. I had made my list of things to make sure we covered.
- Strenuous activity... (wink)
The Dr was very personable. My "administrative contact" had warned me that he would look young, but he was very experienced. I didn't think he was that young and he first started by asking about my depression, then warned that he wasn't a psychiatrist.... "Good", I commented, "I was hoping you were a brain surgeon". He chuckled. (I'm still not sure why he went that direction). He ran through the procedure: I'd arrive at 7:30. 2 hours of prep. My person (or people) could be with me for the prep. They would shave the area - unless I preferred to do it myself before coming in. "Most of my patients just go ahead and shave their hair themselves and come in completely bald".
"Well, um, ok..... I won't be, but that's one of my topics", I warned.
They will attach a metal frame around my head, which will attach to my skull about forehead high, in 4 places. The anesthesiologist will numb those areas, but it will hurt some and be sore later, he warned. (Another blogger mentioned the frame he was subjected to had plugs that went into his ears and was quite uncomfortable. I asked about that and the Dr said they use a different one. He didn't think his was any more comfortable as no matter the frame, it has to be attached securely).
With the frame attached, they'd do another MRI. (Which has made me wonder WHY did they do the first one? Nothing in my brain is going to move around - and even if it did - why bother to have an MRI today and then another one right before surgery? I didn't ask). The new MRI would be used to identify exactly where they were supposed to put the wires (electrodes).
He reviewed that although using the device and procedure for depression was new, installing them for Parkinson's has become very common. He has done about 175 of them. After the MRI, they'll anethesize me but I can be awake or asleep. I chose awake - as much as possible. I dunno why - cause it's my fricken brain maybe?
They cut an incision between 4 & 5 inches on my scalp then drill 2 nickle size holes and put the wires in. Once they get them in exactly where they want, they'll plug the holes with some caps. Then they'll probably knock me out (anesthesia-wise) and put in the 'generator'. It'll go under my collar bone and he offered that if I shot a rifle or shotgun, he would recommend putting it on the left. If I drove a lot, he would recommend the right. Hmmmm..... time to jump in I thought.
"I'd like the generator implanted as deeply as possible. I'd prefer it didn't show". He examined me briefly and said he would put it as deep as possible but that I didn't have much fatty area to work with. OK, I probably haven't mentioned that one of my depressive symptoms is that I don't get hungry very often. Left to my preferences, I'd be at least 20 pounds thinner. I'm below average anyway - I just don't get hungry often. I can lose 5 pounds a week without thinking about it. So - I actually FORCE myself to eat breakfast. I try to eat an extra something with my sandwich at lunch and as for dinner, well, glad I have my kids 3-4 times a week. Not much of an appetite. With not much body fat, he doesn't have much to work with. Dang it. I love swimming - especially with MY kids - who I'm not telling about the procedure.
He finished up with saying the operation would take about 4 hours and I'd stay the night in the hospital. He asked to make sure they had given me the forms for identifying who he 'could' talk with after the surgery - HIPPA laws and all that.
My turn: "I need a cover story to tell my friends why I have a bald head". He looked puzzled. "I haven't told many people I'm having this done. Only my closest friends know how much I suffer. I can put on a great mask. Only 2 people know I'm having the surgery. Not even my kids.... so use your imagination." He still didn't look too sure of what I was asking.
The lights went on in his eyes. "I guess I'll suffer a sub-dural hematoma thing", I said.
"No, in case you know anyone that knows their medical terms, you'll have an epidural hematoma. It's not quite as dangerous - much more common - and still requires a hole in your head". He wrote it down for me. Now back to the generator? He came up with nothing. "It's about the same as a heart pacemaker - are you willing to have a heart attack to cover it?", he kind of jested.
Hmmm.... so while they were drilling holes in my head, they ran an EKG and found my heart has an unusual rhythm so they popped a pacemaker in. Um, probably a little much to fathom, but who knows. I need a good cardiologist to give me some ideas. I am actually thinking now of saying something like "when I was in the hospital they noticed an irregularity and I'll have to have it investigated". That may pave the way for me to have a pacemaker put it.
The idea is growing on me, but, like I noticed in the waiting room of the MRI - one of the things I DON'T like about this whole thing is lying about it. I go bezerk when my kids lie - and here I'll be setting a really bad example - in order to save my vain butt.
OK - I digress. Back to the brain surgeon.
I asked about driving and he said 48 hours after. As for strenuous activity - which is what my gf wanted me to ask about.... if you're catching my drift - he said 2 weeks. Ugh. I have been lucky in that my sex drive has been minimumly affected. Actually the more blues I feel, the more drive I seem to have. So now you know - 2 weeks.
And finally, I asked him if he had every lost anyone while doing this. He went back over that he's done about 175 of these. He has had 2 that suffered some hemorrhaging and both recovered well. He hasn't had anyone die. He hasn't had any of the leads break. He said as far as brain surgery, this is about as simple as it gets.
That's why they call it brain surgery, you know, right next to the rocket scientist. Easy stuff.
Ya, right, but it's MY brain.
The Dr did well to answer all my questions.
They let me keep my 'films'. The MRI. So what am I going to do with those? I do have couple of windows in my bedroom that could use some new decor.... just tape a few of these up. Yup. LOL. Now that does bring a smile to my face. Here's my new curtains.... pictures of slices of my brain.
Down to the actual hospital to get all the paperwork done. The research company is footing the bill and the admin coordinator had already given me a letter for them to put on file - so not to bill me. HOLY CRAP - can you imagine getting the bill for all of this? (Actually I'd like to SEE the bill). Then to the lab and draw some blood and take my blood pressure.
For some unknown reason, my blood pressure was a little high. GO FIGURE. I'M NERVOUS ABOUT SOMEONE DRILLING HOLES IN MY HEAD AND WIRING ME UP TO A BATTERY IN MY CHEST. Can't imagine why I'd be nervous. (Sorry - I digress again).
The nurse was very stoic and sterile (pun intended). While in the exam room she asked if I could give her a urine sample & I couldn't resist. She was being sooooo professional. I said "Sure, if you'd turn around - I get shy". She smiled and was very warm for the rest of the time. Humor goes a long way in tense situations. I filled it to the brim - in the bathroom.
Then the anesthesiologist (Dr Sleep). He was a young guy and went through the whole operation thing again. He explained that for depression dbs, the patient is usually out for the whole thing. If the surgeon needs me awake, they'll just give me some oxygen and wake me to the point the surgeon can find out what he needs. I explained the surgeon gave me the option of staying awake - and I would prefer that. Dr Sleep reiterated that there was no reason for me to be awake. I reiterated my preference was to be as awake as possible. HELLO? He acquiesced. I'll have to remind him - in front of nurses or the Dr. I don't trust that he won't just send me night night. Of course with today's anesthesia - well - you don't remember things even if you're awake.
Maybe I should take a movie camera and film the whole thing. Think they would let me? I think if it works - I'd love to have the film.
Finally the last person to come talk with me is the nurse practitioner. She was a little over the top happy. "Hi, my name is .... oh good you're getting a dbs for depression. I really hope this works for you...." but it was that syrupy sweet, not quite genuine voice. Blah blah. We got along but frankly I feel it was more for her benefit than mine. The only useful piece of information I got was that she thought I'd be in the hospital for 2 nights. I need to check with my admin coordinator to see how long the others have been staying.
As the nurse practitioner pointed out, especially since I'm not paying for anything, I ought to stay for 2 nights. Extra care. I can see the point, but I've spent a lot of time in hospitals with my mother, father & sister. The last place on earth to get quality rest is in a hospital!
Finally I was free!!! From 8:30 AM to 3:30 PM. My nervousness was about 1/2 of what it had been. It's not so much nervousness about the procedure as it is anxiousness as to what is going to happen. What if all of this doesn't produce a change? I'll have wires in my brain connected to a battery in my chest with all sorts of LIES about why they are there.
Then again - so what. If it doesn't work - I'll find something else.
Sorry these are so long. I don't know if less frequent but longer posts are better than the opposite or not.
One more note. Besides my best friend in the big city this is happening in, who will be taking care of me - to and from the hospital and probably stay with me the first night home; my gf will take off work to take care of me as well. And, I talked with an old old friend who lives 3 hours away. He and I have shared lots of things. He is OCD and we've often been very frank about what we were experiencing - both agreeing we can't know what the other is going through, but both know how much stigma there is with it.
It was good to tell someone else about it who accepts me. Maybe tomorrow I'll blog about the typical response I've gotten about depression.
Sunday, December 7, 2008
Yesterday was a prime example. I got to sleep in and it was a lazy morning. I felt good, all things considered. As the day progressed, I just got more and more "tired". Not sleepy - just tired. We went shopping then drove about 4 hours. Before the shopping was over, the tired began. I popped a ritalin and had a coke. An hour later as we were on the road, the tired continued. Now typically I love driving. Maybe because it doesn't require a lot of energy so I don't feel fatigued. No such luck today. The tired continued and I popped another. Two hours later I was still d-r-a-g-g-i-n-g and popped the third.
We ate dinner with some friends and were going to a football game. Rather than continue to be "dull", I popped the 4th. Finally awake and alert enough to engage in conversations and be myself.
The blahs never really entered the picture - though I have to admit part of that was because I was with someone the whole day. The blah-blues usually attack the worst when I'm alone. (Being almost unemployed and working from my house when I am employed, doesn't help this).
My gf & I had a good opportunity to discuss the upcoming operation. I've concocted a "story' to cover the surgery.... (I've pulled the concocted story out from previous posts to further the anonymity).
I've found another person's blog about their DBS. He's a parkinson's DBS patient. Here. He's got some good points and I will definately ask about the "steel ball ear plug portion of the halo/frame procedure" which bothered him.
He's doing well and I appreciate his willingness to share. I'll try to be as detailed.
Monday, December 1, 2008
I got up the courage to do it, but then the doctor was out of the country during the time I had set aside. In the meantime, I researched other alternatives and found a study of VNS (Vegus Nerve Stimulation). At first I thought, ya, I can do that instead, and I contacted the University hospital conducting the study. The more we talked, the less I liked VNS. However, they were also a study center for DBS - Deep Brain Stimulation.
So why am I writing this? Well, I was very proud of Kara, who blogged her experience with ECT and it gave me courage and hope. We corresponded a little and she helped me with some questions I had. Some of her answers ultimately helped me decide not to do the ECT. Why? Pride probably - and I'll get to that.
Pre-depression I was an MBA trained consultant / executive. I was married and had wonderful children. One could say I was successful, both in the material ways and in the more important "love & family" ways. Now that doesn't mean I was perfect by any means, it simply means I was able to accomplish just about anything I wanted and had a VERY enjoyable life. I was happy. To the core happy.
Slowly the depression creeped in. At first it was just an small amount of fatigue. More tired than I should have been. A checkup at the doctor didn't show anything but I was running high blood pressure (genetic). The doc put me on a mild anti-hypertensive medicine. My fatigue however, got worse. One of the side effects of the med he put me on was that it exacerbated depression. The doc asked me a series of questions and changed my blood pressure meds and also put me on Paxil.
My world got better for awhile. I had energy and was generally in a good mood. I enjoyed getting out of bed and taking on the tasks at hand. But then the fatigue came back. We upped the Paxil... a few times, but every time, it seems my body would build up a tolerance. So we started switching to see if there was a anti-depressant that worked better. I've been on Wellbutrin, Effexor, Stablon, Cymbalta, and Lexapro. (And probably some I don't remember).
The Effexor did well for awhile, as did the Lexapro. That doc moved and sent me to another one. He is an aggressive doctor (which I like). We also switched around, but then he got me on Paxil and Wellbutrin together. This worked for probably the longest period.
But it wasn't enough. In the last 6 years I've gotten divorced and lost my career. I've chosen to pursue another career (back to school) for a variety of reasons including staying close to my children.
After losing the job, I went to a new psychiatrist. (New to me - not brand new). She took me off the meds (which weren't working) and put me on Lamactil and introduced me to Ritalin. The lamactil never really did much for me, but by golly, the Ritalin gives me the energy to get out of bed and DO something.
My family doc, who had put me on the combo in the first place, wasn't really keen on the "speed" to compensate, but he didn't have any other ideas. The fatigue is my main complaint. I also suffer from the "sad" blues on a regular basis, but years ago I went through a self-help thing that gave me a lot of tools to combat the blues. I can handle those - when I'm not fatigued. (Does that make sense?) A great program for me at the time.
My identity though needs to remain anonymous. You see, hardly anyone knows about the depression. The ex-wife knows - and she saw it as a HUGE flaw. She couldn't believe I took anti-depressants and sure as hell didn't want to talk about it or let ANYONE know. Fair enough. We ended with a nasty divorce and I'm sure it would have come up in the child custody if push really came to shove, but we came to an agreement where I get the kids 50% of the time.
But the kids don't know the extent of the depression. I've never hidden my medicines and I suspect the older ones have seen them and either researched it or asked their mother. But I don't talk about it. I know - I know - why hide a disease? Well, because in my generation - it's a sign of weakness. It's a stigma.
Before I lost my job I tried to explain my performance problems to my boss as depression symptoms. He was NOT sympathetic. In fact I believe it hastened my departure.
Other symptoms of the depression that really bother me are the cognitive fogs and the mental interruptions. People who have had severe depression know exactly what I mean. Others really don't comprehend it well. When the cognitive fog comes (which is every day now if I don't take the ritalin) it's like your brain just can't connect to the thoughts you want. Many people have had the Tip of the Tongue syndrome where you can't think of a word, but you know you know the word.... The cognitive fog is like that, but for concepts as well as words. People even. It's right there on the tip of my tongue - but the connection doesn't come.
The mental interruptions are similar. We've all experienced our thoughts being de-railed. "Lost my train of thought". Yep - try that happening 3 or 4 times a day, or virtually any time you attempt to focus on something you're not really interested in - um, like the company's P&L for the month. The train totally gets derailed. But, those of us who are quick on our feet have figured out coping mechanisms to hide it. We just change the subject if we're in a conversation. Or, as I have had to do, mark every paragraph I've read, just so when I lose my train of thought, I know where to go back to. Yuck.
All this is complicated even further by my ego.... My cognitive ability has helped define me. I can solve just about anything - and had the tenacity that I wouldn't give up. (I'm really not trying to brag, I'm trying to paint a picture as to why the symptoms of the depression bother me so much). My brain has been a lot of my identity. Now, unless I'm fully on my Wellbutrin and just took a hit of ritalin, I'm slow. Problem solving is more difficult and if the fatigue hits - well - I'll just lay down for awhile and come back to the problem. (Usually never come back to the problem).
So what about the DANGERS of depression, like hurting yourself or suicide, you ask? I've had a couple of times when I've thought about it. I've had plenty of times that I've wondered"When will the pain/fatigue/embarrassment stop? Maybe I should...." But that's as far as it goes. I've failed at a lot of things - marriages, jobs, relationships, projects, careers - but I won't fail at living. My kids deserve more.
I literally have to make lists and notes about what I need to do this week and today to portray myself as a functional person.
Socially I've declined in friends. I got REALLY lucky a little over a year ago and was introduced to a lovely woman my age with grown kids. I've been painfully honest about my depression with her and she hasn't run away. (A few other women did - and I can't blame them, frankly). The GF however has had depression and come out of it. So she knows the score and fully accepts it as a disease. Wow.... what an angel.
(And getting back on track please)..... after contacting the hospital doing all these trials, they invited me in. The university's psychiatric department is headed up by someone famous - who if you search the internet, you find his name all over the place. The doctor doing these trials is a pretty smart cookie as well. And he shoots straight. My depression is "moderate" by his standards. (Of course he commits people to in-patient treatment on a DAILY basis). He wasn't sure I was 'depressed enough', but he gave me a shot at it.
At first I thought, well, I can BE more depressed if that's what it takes to get in the study, but then I decided that really wasn't in MY best interest. If this study wasn't for me - there would be another one, or I'd pursue some other avenue. Like I said before - I've let my pride get in the way of showing how bad it affects me - so I just let me hair down and rolled with the punches. I took all their little depression tests and visited with them a number of times over about 2 months before the doctor's administrative assistant told me I was in - IF I wanted to still be in.
The trial is a blind study - which means I won't know if the gizmo they give me is turned on or not. At least for 6 months I won't know. from what I understand 2 out of 3 of the gizmos implanted will be turned on. The other 1/3 won't be turned on for 6 months and NONE of us will know which one we are.
The previous tests for this gizmo showed about a 2/3 chance of lessening the depression. So.... for those of you who can see it coming, I have a 4 in 9 chance of it working in the first 6 months. Less than 50/50. (My brain is slower but it still can get there). There are major surgery risks - I mean they're doing fricking BRAIN SURGERY on my most prized organ. (Well one of the most prized organs LOL).
I talked this over with my family doc. He had been in favor of the ECT - because he was out of ideas and wants relief for me. When I told him about it - he was like "Give me the psychiatrist's name and phone number and I'll call him and tell him you're the perfect candidate". Well, um, ok. As it turns out, my family doc has had 2 patients go through this surgery for the Parkinson's tremor reduction. (Same gizmos - they target a different place in the brain - I'll get technical somewhere else). Anyway, he had one patient whose insurance paid for the surgery and gizmo and one whose insurance didn't. He knows I haven't been working consistently for 3 years and although I had built up a war chest - the money is getting tighter and tighter - especially with the downturn in the economy. Bottom line - he was ecstatic and told me it was like someone was handing me $100,000 in help.
Well, honestly - if this were a guaranteed treatment and it cost $100,000 - I'd do it. I'd easily pay $100,000 to feel NORMAL again. (No, I'm not a millionaire by any stretch of the imagination - but I am comfortable and flexible enough that after I lost my job, I cut back budgetwise tremendously and have been able to do consulting and odd jobs in the meantime). Yup - I'd write that check.... but I don't have to.... I'm one of the lucky ones.... one of the first to get this treatment.... and as I pointed out to the GF, if I felt better, I could probably make that $100,000 back pretty quickly. I don't mind hard work - in fact used to enjoy it.
So there's the start. I am a patient in a DBS study. My surgery is scheduled for December. I want to diary what's going on and what happens. I want to mainly for me - but also for anyone else suffering from depression - like Kara did for me - to remind us to not give up hope - there is always something else to try. And being a guinea pig? Well, that's ok too. I'll take my 4/9 chance for six months and my 2/3 chance after 6 months to feel better.