Monday, December 22, 2008

Monday Blues & Answers to Comments

Yes, staples, not stitches - my bad. Metal staples that tend to grab on to sweater material especially.

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.

8 comments:

Anonymous said...

I also wish you a good holiday and I hope the device work out in the end...

Anonymous said...

After catching up on the comments, I want to let everyone know, the pain does go away. Your body becomes acclimated to the wire leads, such that you will rarely notice them. Everything that seems to be an issue initially, becomes a non-issue. The lie is the fault of society (social stigma), not the depressed. Severe depression, really all depression, is a deeply personal issue, that almost no one understands the way the stricken do. You do, or tell, whatever you have to do. Please, do not be swayed from trying this life-saving trial because of the comments you read here. I believe God rescued me from what became a 6-year bout of severe, intractable depression through this trial and a very talented neurosurgeon, and I give Him all the glory. I still don't know if I'm "turned on" or not; however, I suspect I am live, as my life has turned around after years of medication, rTMS trial, ECT and therapy failed. For those qualified for this trial, it is simply choosing life over death. At least that is what it was for me-walking, living death. I truly pray for each of you considering this procedure, and for you 278-005, for your strength in going forward. I wish you all hope, peace and joy this Christmas Season.
PsyFi

Anonymous said...

PsyFi,

How long have you been in the study?

Anonymous said...

6-months, and I just went "live";though I don't know if I was "live" for the 1st 6-months, I am definitely now. The lack of comments since my post is curious, but may be a good thing for those still considering the DBS trial. How are you 278-005? Hope the physical, but more so psychological, pain is lessening....
PsyFi

herb said...

Hi PsyFi,

I’m curious about your comment that you went live and “I am definitely now”.

Is that because you were told that you’ve been activated or noticed a physical sensation or that your mood state has improved etc?

I know from the VNS and rTMS patients that there is initially a noticeable physical sensation when receiving treatment so a so called true blinding of the patient is not possible. I’m curious if the same is true for the DBS patient.

Would you care to elaborate further on how you know “I am definitely now?”

Warmly,
Herb
VNSdepression.com

Anonymous said...

No sensation...As per the study protocol, all patients have the device turned on after 6-months. Only the programmer knows whether it was on or off prior to this 6-month anniversary...
PsyFi

herb said...

PsyFi,

Thanks for your reply. I hope you don’t mind my asking you questions.

I shall presume therefore based upon your previous response that you were “told” you went “live” which has peak my interest further and has raised the most important question of all at least in my mind.

Have you noticed any improvement in your mood state?

Warmly,
Herb
VNSdepression.com

Anonymous said...

Hey PsyFi,

The questions continue: now that you are 'live' (and everyone at the 6-mos+ stage is 'live') of how much are you aware, included, and/or participatory? I guess what I am asking is:
- do you know your settings?
- do you get to add input to the settings?
- how much are you included in decision-making?
- how soon after programming do you feel a 'response'?

Any reply you can share is meaningful. If you prefer, I can write you directly, although I am unsure how we could remain anonymous that way.

Post a Comment