Thursday, August 23, 2007

UPDATE - Health continues to decline

Dear Family,

Things are not going so well. I thought by finally having a computer again, and getting it online, I would be able to communicate with ease due to Skype and email. However, I have discovered that my condition has deteriorated quite a bit since the last time I had a working computer, and to my surprise, it is now much more difficult to make phone calls, and even composing email has proven to be very challenging for several reasons. Phone calls are often useless because I can't remember what to say, or sometimes even why I am calling. Emailing is somewhat better because I have all the time in the world to collect my thoughts and try to get them out, but even this is challenging. Maintaining a train of thought long enough to type it is no longer possible. I have to constantly try to refocus, concentrate, and try to remember the point I was attempting to convey long enough to type it out. Sometimes it is simply lost into the ether forever, and does not get communicated. I am often left with a nagging feeling that there was something very important that I wanted to say, but cannot remember what it is. This is happening right now.

My typing skills are so bad now that I don't think that 6 months of no computer can be solely to blame. I was trying to type my password for the router this morning, which has to be entered twice. Twice? How about once! It took me well over 20 attempts, and I'll admit my increasing frustration did not help. I tried to stay calm, focus, and carefully type the password, which is XXXXXX, something I ought to be pretty used to typing, but I just couldn't do it. I would stare at each letter I wanted to press, but my finger would simply not go there with enough precision to hit the right key usually, and when I was able to hit the key I wanted, I would often hit the keys around it as well. Things got a little better since then, as I became fully awake, and began to type this, but I am two paragraphs in, and it has taken a couple hours to get this far, due to all the reasons I mentioned.

My mental abilities are definitely worsening. The best way to describe it is as others who have Morgellons often do. "Mental Fog." This is the clearest moment I have had in weeks, which thankfully has given me enough clarity, presence of mind, and ability to type this, but usually I am just drifting along in a fog, don't know where I'm going, don't know what I was doing 5 minutes ago, don't know what I'm doing now, don't have a goal or a plan, or maybe I do, but I don't remember what it is. I miss all my appointments. I missed one last week with GA , who wants me to jump through more hoops. Now I have to "re-qualify", which means re-fill out all the application forms, (20+ pages) submit a new letter from my landlord (that'll be fun), and show a bill, less than 30 days old in my name, or if that's not possible, in my landlord's name, then deliver them all in person at the assigned time. When I found out that I missed it, I re-scheduled for a week later, figuring that would give me enough to get those things together, but I just discovered that appointment was yesterday. I had no idea that a week had passed so quickly. I guess it must be that I am sleeping so much, that I am not aware of the passage of time. If I had to guess I would say it averages 18-20 hours a day. I don't really keeps tabs any more on how much I sleep, as it is difficult to do that anymore. It is always sporadic, and I usually have increased mental fog when I awake. Sometimes I sleep for 14 hours straight, sometimes for 2 hours, sometimes for six hours, and often times 2 hours later I will be asleep again. Occasionally I will actually remain awake for as long as 12 hours or so, but it is becoming less frequent. It is not consistent at all, and I exercise no control over it. I welcome it in fact, as being awake equals being uncomfortable, miserable, and depressed. I also have to spend more money on food when I am awake more.

Last week I went out and bought a 4 oz bottle of colloidal silver ($18) from the health store up the street after seeing this video.

http://www.youtube.com/watch?v=XcL8HvA7sME

I tried it, for a couple of days, before i accidentally dropped the bottle, and the rest poured onto my bed, and experienced a 'purge' like the one she described, although at this point I guess you could say that these I am always experiencing a 'purge' but usually on a less dramatic level. IE. 'things are coming out of every orifice of my body, and as best I can tell, also reentering the same way. They are in my nose, my eyes, my ears, my mouth... let's just say, EVERY orifice, even the ones you don't normally think about as orifices (until things start going in and out of them), and definitely some that you'd rather not have anything like that going out of, or especially into.

I have been bleeding in small amounts from my ears, my nose, and even my belly button, I believe from the aforementioned 'purge', or at least blood has been trailed there by the 'things' going out of my body, as evidenced by scabs in those areas. There is a small scab, accompanied with quite a bit of 'discomfort' in my urethra as well.

Basically I am beginning to doubt that I am capable of "getting it together" enough to apply for disability, although I am trying to come up with a much needed system to remind me constantly of things I need to do, that can permeate my mental fog, but this is very hard to devise and implement when you are frequently in a mental fog!

I have an appointment on a tuesday of this month, either last tuesday, or the upcoming one, hopefully the latter (although does it really matter?) with a Dr. from the SOMA Clinic. She wanted to see me months ago to discuss something that came up on my bloodwork, but I haven't been able to keep my appointments up to now. I really want to see her though, as I'd like to show her all the stuff I learned from the website, get a test for Lyme disease and others, and possibly start some of the prescription meds recommended there. Did I share with you the email that I got back from the lady who runs the website? I will forward it to you if I remember. She included a list of Doctor's in my area that are treating Morgellon's. The only bad news is that the only "Dr." in SF other than $500 NP Ginger Savely, whom I can't afford, is a Dr. who she shares an office with, Dr. Stricker, who charges $600 an hour. Definitely you should read the entire site if you get a chance, especially the page titled 'medical information' which is her theory that morgellons is actually a symptom of a disease called "Chlamydia Pneumonia" that lurks in your system beyond the scope of normal blood tests, and slowly destroys your immune system among other things. (making you more susceptible to parasites such as morgellons among other things, and eventually causing death)

Well, I am only about half done telling you everything I need to health-wise, but my moment of semi-clarity is ending, and I am having such a hard time trying to find the words for what I want to say. I am getting sleepy, and I have been working on this email since 10am or so, and it is now almost 4pm, and I cannot go on. I will try to cover the rest in my next email if I can remember what i have to tell you

I am reminded of a short story I read in gradeschool, titled, 'Flowers for Algernon', which is a collection of letters from a person with an idiot IQ, who is given an experimental drug that turns him into a genius, and then the effects fade and he is returned to idiot status as is charted by the declining quality of his letters (or was it a journal?). It is a must read if you have not, although I hope I do not share his fate. I bet it is even available somewhere online if you were to google it. I will try to remember to do that later.

I see that a couple more episodes of House MD, my favorite television show, have downloaded to my hard drive, and I am eager to watch at least one of them. although I often fall asleep half way through as I probably will this time. I am watching the show from the beginning, in order, due to the wonder of the internet. The shows slowly (and I do mean slowly) download to my hard drive when I am connected to the internet, and I get to watch them (in 480P HD) on my computer, commercial-free when they are done. For free! One of these days the tv people will get smart and let you download their shows directly from them (with commercials intact), but hey, who needs them! For that matter who even needs Tivo anymore! At least I am finding one benefit from finally having a working, internet-connected computer again. I may be losing my mind and my health, but at least I can still watch the tv shows I want, when I want, as often as I want.

btw, it does not escape me the irony that House MD is my favorite show, when Dr. House would almost certainly dismiss me as delusional just as quickly as so many of the doctor's I have seen up to now have. Or would he? I like to think not. ;)

d

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From: Me
Date: Fri, Aug 24, 2007 at 9:45 AM
To: Family

I looked up "Flowers For Algernon" with Google this morning, after re-reading my letter from yesterday, and was surprised to find that not only did I get the name and details about the short story correct, but that they have since written a novel, a play, and a movie.

Personally, I think the story was perfect in its original form, (a collection of "progress reports"), and feel the adaptations would just take away from it. (in the same way that the movie adaptation of "Bridget Jones Diary" did so horrendously)

I even found a copy of the original short story posted online, in case you haven't read it:
https://www.educ.kent.edu/community/DOCWHIZ/rdng4.html

As I said, it is a great story and a must read, but I hope I do not share any similarities with his fate.

Another thing that strikes me as odd, is why can I remember the name and details of a story I read 25 years ago so clearly, but not what day it is, or anything else recent?

One thing I had hoped to do once I got this computer working, was to begin the preliminary steps of writing a screenplay, loosely based on my life, titled 'falling through the cracks' (or something like that but more clever). At the moment, I now realize I am not even remotely capable of such an endeavor. I can only hope that things improve somewhere down the road.

I also want to read that book Mom told me about, about writing, by Stephen King. Do you have a copy of it you can send me? I wonder if that is available online too?

I wonder if the slight "lifting" of the mental fog I have been experiencing for brief moments over the past two days can be attributed to the colloidal silver i took? I wish the damn medical community would get off their asses and do something about this so I dont have to figure it all out for myself! (using myself as my own gineua pig). hmm... They have a lot of nerve being so arrogant towards those who "self-diagnose" and "self-treat" when they leave us no other choice for obtaining any kind of treatment.

d

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From: D.D.
Date: Sat, Aug 25, 2007 at 11:20 AM

Dave,
Stop sending me book long e-mails about anything. I will never have time to read these things with how busy I am, and I have no money and I'm in serious trouble for it. What do you expect me to do about your situation? The more you try to make yourself seem totally incapacitated, it makes me just give up trying to think I can do anything to help. If you want to just give up on life altogether, there isn't anything I can do about it. It makes me sad, but there really IS NOTHING I CAN DO ABOUT IT! Stop it! I won't have any money for a long time, and if you have given up doing anything for yourself, nobody is going to waiste their time flushing energy down the toilet trying to help. I'm ready to tell you the same thing I did before, don't write e-mails telling me how fucked you are. If that's what you think, then you are fucked, and there isn't anything I can do about it. If you had something positive to say, maybe I could react in a positive way. If you are convinced that you are fucked for life, then you are, and you will only bring me down with you. I can't do that, Dave. I worked so hard to have my wife and what little free time I can come up with to visit her. Any thing you ask of me will cost me time with my wife, so I just can't do that. STOP IT! YOU CAN HELP YOURSELF! People have no legs on wheel chairs and they work. I told you before, if you would just demonstrate that you can get any kind of work at a temp agency, or anything, maybe people would see that you are trying and give you some help. If I decided to stop working, do you think anyone would give me money? Would you give me money if I was in your situation? No? then why should I give you money? That isn't how life works. I was happier after I told you not to talk to me anymore, and you stopped trying to manipulate me for money. I felt bad that I wasn't hearing from you, and I was worried, but it was easier that having to be petitioned daily for money. O.K., Dave, so lets say you are right, and you have this Morgellons Disease, WHAT THE HELL DO YOU WANT ME TO DO ABOUT IT? THERE IS NOTHING, AND THERE WILL NEVER BE ANYTHING I CAN DO ABOUT IT! HELP YOURSELF! My life is too full of responsibility, and my relationship with my wife suffers. I am working on moving to Brasil so I can live with my wife. take care of yourself! I really hope you do. Life has always been something that if you think good, good positive things happen, if you think bad, then bad is what you get, and we're all going to die anyway!

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From: Me
Date: Sat, Aug 25, 2007 at 12:20 PM
To: D.D.

D,

I excitedly opened your email the moment my computer notified me that it had arrived hoping that perhaps you might have offered some words that may cheer me up. A simple "hang in there david, be strong" would probably have done the trick, and helped me feel less depressed and alone.

Nowhere in this email, any previous emails, or by any other form of communication, have I EVER asked you for money! You clearly have me confused with someone else. I sent you that email because I thought you cared about me and would want to know what is happening to me, not to glean money from you. I'm sure there are a lot of temp agencies that will allow you to sleep whenever you need to, and give you a job with blood and other "things" pouring out of your orifices, can only type 5 wpm, and be unable to think clearly, or complete a sentence without losing your train of thought. I will try not to remember your poisonous words the next time I am out walking the Golden Gate Bridge. Don't worry though, I'd be too scared to jump off (as I found on my previous walk). When I'm unable to tolerate these conditions anymore, I think some of Dr. Kevorkian's useful tips that I've downloaded from the internet will be the way I'll handle things instead.

I can't sugar-coat the details of my life so that you aren't 'distracted'. If this hate is truly what you feel towards me, then I really don't care to hear from you again. The LAST thing I need in my life right now is further negativity from you.

Was this one short enough not to inconvenience you?

Have a nice life brother.

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From: Mom
Date: Sat, Aug 25, 2007 at 5:15 PM

David

Of course, I've read "Flowers for Algernon" and seen the movie, a long time ago. They're both classics. I haven't had time to write because since it's the beginning of the school year, I've been really swamped. I'm also trying to learn a curriculum that I've never taught before and a computer grading system (PowerSchools) that I've never used before. So I've been up every night until at least midnight and I have to get up at 5:00 a.m., teach all day, do it all over again each night. Exhausting! Hopefully one of these days I'll start to get caught up. We just finished the second week of school.

Well, I have a huge stack of papers to grade, and then I have to figure out how to enter the grades into the program on the laptop the school gives me.

I wish I could be of some help to you. I really feel helpless from here and don't know what to do.

Love, Mom

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From: D.D.
Date: Sun, Aug 26, 2007 at 12:35 AM

Dave,
Do you realise I have been planning to help you after I get my money, but I didn't want to tell you, because you won't try to help yourself? I will fix the subaru after I'm done with it around January, and then get you into your own house with 12 months paid. I've been very realistic telling you the things in my other e-mails. If you insist on giving up and being negative, how can you expect anyone else to take care of you? Don't tell me you're going to jump off bridges trying to manipulate me. It just belittles both of us. Do you understand that every time you send me all this negativity, I can't eat all day, and get overloaded with stress. There isn't anything I can do to help you right now, and I'm very busy until January. It's going to be the hardest year I've ever had, so please don't make it worse with all the negativity. It would be nice if you had something positive to say for once. I've had enough of this trauma to distract me for a while now, thanks. try to at least keep in mind that you are distracting me from getting my work done so I can even help you out as long as you send me negative e-mails, and I will feel like I'm waisting my effort the more negative you are. If you have given up on life, there isn't anything I can do but be sad about it.

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From: S.B.
Date: Mon, Aug 27, 2007 at 10:24 AM

It is good to know that you are making progress, even if you don't realize it yourself.

One thought. my doctor has put me on something called Concerta, which is an ADD medication. It has helped with my ability to concentrate and consequently with my memory. We had tried a different medication earlier, Strattera, which had worked substantially better, but that one had caused some dangerous side-effects for me and had to be discontinued. Perhaps an ADD drug might help with your concentration, or fog, issues. The fog you describe is very familiar to me. I also lose track of time very easily since the stroke.

Please keep in touch.

S

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From: Me
Date: Wed, Aug 29, 2007 at 9:18 PM

Hi Family,

I have left D.D. off the recipient list on this one, as he only wants positive news apparently, and I really don't see any purpose in continuing to include him on these "updates". Whether good or bad news, I never know how he will react, and it sounds like he has enough on his plate right now anyway.

I wandered upstairs yesterday around noon (something I RARELY do anymore), as doing so usually guarantees interaction with my landlord Bob who is usually drunk. As I had feared, I ran into him, but thankfully he was not drunk. In fact, he reminded me that I had a Doctor's appointment! Amazing! So important to me, yet it simply hadn't occurred to me at all! I quickly printed out all the documents I needed, using Bob's computer (CDC letter, Mayo Clinic letter, OSU letter, and several pages from the morgellonstreatmentsteps.com website, including her theories about Chlamydia Pneumonia (being the cause of Morgellons). It's amazing in itself that I recalled, quickly even, all those items that I wanted to show the Doctor, before I rushed down to her office. After waiting 2 hours in the waiting room (during which time none of the 30 or so people in the waiting room was seen) I was told by the receptionist that my appointment had actually been the previous week, and that the doctors do NOT see people without an appointment. No exceptions. I attempted to appeal to their humanity or sense of reason, and was rebuffed on both counts. Having a condition that makes it difficult to remember appointments is NOT a valid reason for missing appointments apparently, and NOTHING is valid reason to allow for the suppression of red tape usage in that office.

I am now scheduled for September 4th at 2pm. My missed appointment from last month with the Psychiatrist, Dr Moranville, whom I have not yet had the pleasure of meeting, is now set for Oct. 1st, at 8:45am. I explained that in my present condition I am quite fatigued and "sleep a lot", and that experience has taught me that my odds of making it to a later appointment are better (if only for the reason that it allows more opportunity to remember or be reminded of the appt.), and asked if there were any other appointment slots available later in the day? There weren't.

I left there rather perturbed, but still had the presence of mind to stop by the G.A. (welfare) office to jump through whatever hoops I had to to get my benefits restored again before Friday's deadline (after missing my last two appointments for "re-qualification"), and re-apply for food stamps (which automatically ended last month as they do every 3 months). Both my CAAP (cash benefit) worker, and my FS (food stamp) worker are on vacation, which means I am probably screwed on the CAAP (which means no check on the 1st, and no more colloidal silver), but I was at least able to submit the form to extend food stamps for 3 more months. HOWEVER, the worker who took my form from me saw my CAAP forms and said "Oh, you get a cash benefit too? You need to report that as "income" on your food stamps application. That will probably reduce your monthly food stamp benefit (of $155) by half, and if you have not been including that on previous applications, they may suspend all your benefits until the amount you were overcompensated has been corrected.

So, now I have either 50% or 0% of my food stamps coming on the 1st and NO cash benefit.
Such a productive day! So glad I went down there to those two offices to get everything sorted out in person. It's always better to do these things in person I've always found, don't you think? At least it was when I lived in the real world. I've apparently crossed over into the twilight zone though unfortunately so I guess that doesn't apply here.

In other news, the benefits I attribute to having taken the colloidal silver (which I am out of) are now fading unfortunately, and my thinking has been murkier today than it was yesterday.
So, how has your week been?

d

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From: Mom
Date: Wed, Aug 29, 2007 at 9:58 PM

Yes, I guess D "can't handle the truth". I will write those appointment dates on my calendar so I can email you to remind you ahead of time, if that will help. It seems to me all their psychiatrist appointments are at 8:45 a.m. That probably just means they schedule everyone for that time and everyone who actually shows up just sits in the waiting room and gets seen one at a time until the doctor has seen everyone. What do you want to bet?

I boxed up some razor blades I had bought for you, along with a sample of the razor that we got in the mail, so you should be receiving that. It's that Gillette--I already forgot the brand.

I'll let you know what we find out after Bob has his appointment on Friday to find out the results of his bone marrow biopsy that he had three weeks ago.

Love, Mom

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From: Mom
Date: Thu, Aug 30, 2007 at 10:34 PM

How about if I take the day off September 4th and come to SF to accompany you to your dr's appointment at 2:00? I could fly in for the day, take a cab from the airport to your place, pick you up, we could go to the clinic, then call another cab when you're finished.

BTW, did D come to see you today?

Mom

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From: Me
Date: Fri, Aug 31, 2007 at 10:41 AM
To: Mom

no, D didn't come. i called him to see what was up and he started yelling in my ear about all of his stress. i kept it civil, and attempted to steer him towards a productive conversation, but didn't get much. first he said that he was too busy to come, then he told me he had to come, but wouldn't have time to see me.

as for the 4th, i will be there with bells on if i can just remember. call me and email me in the days leading up to the appt, and that should be fine. lets save the visit for something more important (like an SSI hearing or something) btw, i turned on my cellphone, so you can also call me now: 415-XXX-XXXX

d

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