December 2011
1 post
13 years goes by so fast.
Happy 13th Birthday to K.
Happy 12th Birthday K
It’s crazy how quickly kids grow up.
May 2010
1 post
Emotional hurdles
I’ve had the idea to write this post for quite awhile however I’ve held off because I wanted to get my thoughts sorted out so that it not only tells my story but also adds value for others, both patients and friends/family of people with chronic illness. This post begins a series I’ll be authoring on living with chronic illness.
The emotional and psychological hurdles are more...
April 2010
1 post
March 2010
2 posts
February 2010
1 post
Hanging on by a thread
We’re +7 days since my infusions and things are basically even at this point, no better but no worse. I was diagnosed with a minor pneumonia the weekend leading up to the first infusion on the 8th and things cleared up nicely after a weeks worth of antibiotics but things are slowly going downhill again. While I’m incredibly excited at the prospect of getting off antibiotics eventually,...
January 2010
1 post
Finally getting treatment!
It’s been awhile since I posted anything. I’ve been busy fighting with Blue Cross to get the IVIG treatment approved and it finally happened. I’ll receive my first infusion as a split dose on February 8th and 9th.
It’s late but I plan on writing more soon about advocating for your own health care. It’s not just about this one battle but the battle that has taken...
December 2009
1 post
Happy Birthday K
November 2009
5 posts
Giottos LCD lens
So, I bought a Giottos LCD lens for my Nikon D40. Bad idea. I removed the original Nikon plastic POS and all looked good, the glass is of high quality and it looks very nice, however it kept popping off. I put a couple dabs of super glue on it thinking that should resolve the issue, however it caused some weird glare on the glass from the fumes (I think?) and when I went to remove it to clean it,...
Appeal Redux
So the appeal of the initial denial by Blue Cross was denied. My immunologist is now moving past the generic form letter appeal and working with the insurance company directly to impart the fact that this is a very medically necessary treatment. The word is, 10-14 days out for a final decision.
Why routing is good on a home network
This is a follow up post to the one I made a few days ago about enabling RIP on my DSL router and Wireless AP.
You might ask, why in the hell I would enable a routing protocol on a home network. Good question. In this instance, it’s a good idea for the particular setup that I have. The DSL connection is using PPPoA, which IMHO sucks but it is what it is. So the Cisco DSL router has 2...
Still pending appeal
I called OHSU last week and left a voicemail for the Infusion Care Coordinator and have yet to hear back, so I assume my case is still under review. I can only hope that they decide to pay for the treatment.
October 2009
5 posts
Cisco 678 and Linksys 54G integration
I ran into some trouble getting a Cisco 678 to communicate with a Linksys 54G AP. After much fiddling I simply enabled RIP on both devices and voila it’s now working.
Using twitter to get attention
I don’t know that this will do anything but given that companies follow twitter/facebook I was given a really good idea. I am asking people to follow me on twitter @gotissues68. I will be posting something soon that my hope is, people will retweet so that it gets buzz and attention and force Blue Cross to reverse the denial/approve my appeal for the IVIG treatment.
The Moblin Files
So I’ve been playing with Moblin which is a niche Linux distro from Intel that is geared towards Netbooks. I was finally able to get the 2.0 final release to boot on my Sony Vaio Laptop (the only time I have been happy that I have an Intel graphics accelerator). Unfortunately it’s pretty buggy but the issue isn’t an issue with Moblin itself but with the ath5k module used for the...
IVIG Denied
I’m not really surprised that Blue Cross denied paying for IVIG. I am, however surprised that they denied it as “medically unnecessary”. So, let me get this straight, I’m sick, 5 Doctors, all of which are heads of their respective departments and in various specialties agree that IVIG is the treatment I need yet it’s not medically necessary? Given the time of the year...
September 2009
3 posts
Still waiting ...
Finished the scopes on Thursday along with another test which I won’t mention cause well it’s gross and I wouldn’t want to upset anyone’s delicate sensibilities.
As I think I mentioned, there is a shortage of IVIG, I’m one of those people who doesn’t really get behind causes because being as bitter as I tend to be, I notice people don’t support something...
CVID confirmed, IVIG is on!
Yup Yup so IVIG is a go. Just waiting on insurance to approve it. By the way, I noticed in the post below …. the comment about the infectious disease, I would like to point out it was a JOKE =) just a little FYI.
So I’ll start posting more updates as I start the process and it’s an 8 hour infusion so I’ll have plenty of things to write about I’m sure.
Crickets
Those crickets you’ve been reading, yeah that’s because that’s been what I was hearing until recently from OHSU. Last week I saw in the span of 2 days an; Immunologist/Rheumatologist and an Infectious Disease Expert.
I am proud to report despite bad past choices I do not have an Infectious Disease. I had some lab work done by the Rheumatology folks and I have am negative for...
August 2009
1 post
Waiting to see what's next
I emailed my specialist to see if she’d put me back on the immune suppressing drugs as doing nothing isn’t helping. It seems as if I’m getting pretty bad again so we’ll see what happens.
July 2009
1 post
Bad News
I received half of the results back from the CVID test and I responded to the DPT vaccine which makes CVID unlikely. It is not a matter of wanting to have one of these rare exotic problems but rather that I would like to know what is continuing to make me sick. I am certainly bummed. I am waiting on the pneumonia vaccine titers but I suspect they’ll be similar to the DPT ones so I’m...
June 2009
4 posts
Now We Wait
I completed the first half of the testing procedure yesterday for CVID. Originally, when I spoke to the nurse last week she told me I would do labs, get the vaccine then do a second set of labs immediately afterward, this isn’t the case. I did my first set of labs then went to the Hematology Clinic and got the TDP and Pneumonia vaccines. In 2-3 weeks I will go back and have labs drawn again...
That much closer to an answer
The blood tests came back last week. Probably to the disappointment of at least 2 people the Leukemia tests were negative. However, the Immunoglobulin tests showed something really wrong which is funny because until I basically demanded the Hematologist run them again he wasn’t going to.
IgA has dropped from 89 to 83 with 70 being baseline low
IgM is less than 10 with baseline normal...
No news
Since the previous pill cam came back negative, this would be #5 for those who are counting. I was referred to a hematologist whom I saw last week.
He does what one would figure a hematologist would do, he took tons of blood to run tests. My permanent record (sounds like something from school doesn’t it?) currently says Crohns. So the hematologist is going with that as the current working...
Al Jazeera English - Asia-Pacific - China tightens... →
I haven’t seen this on CNN or other news sites yet. I remember when this happened so many years ago. It needs to be remembered.
May 2009
5 posts
Snuggie | Snuggie Sightings →
Big Props
Blue Cross denied the pill cam even after an appeal by OHSU, so my doctor appealed to the maker of the device, Given Imaging and they provided one for me at no cost! OHSU is donating the doctor time to read the results once this new study is completed and hopefully there will be more information and possibly an answer finally after 2 1/2 years of living sick without a diagnosis.
I just...
Determining MySQL database sizes
mysql> SELECT table_schema “Data Base Name”, sum( data_length + index_length ) / 1024 / 1024 “Data Base Size in MB”, sum( data_free )/ 1024 / 1024 “Free Space in MB” FROM information_schema.TABLES GROUP BY table_schema;
Always good to know.
April 2009
5 posts
Back to square 1
Well another brick in the wall as it were in the mystery as to what is wrong with me. It is looking more an more likely that it is NOT Crohns but some type of blood or immune disorder.
I started googling what would cause intestinal inflammation and came across immunoglobulin deficiencies. So for grins I ask to be tested and the initial test was inconclusive and the second test did reveal IgG...
Status of The Day
Surviving Before Hell.
If Your IM Buddy List Was Honest |... →
the joy of windows
i wish i could say it was the joy of sex but newp not today. i’m off to buy some dual layer dvd’s so i can backup my laptop which after 16 months of dutiful service has failed me. or should i say windows finally puked.
Status of the day
It’s the Easter Beagle, Charlie Brown
March 2009
2 posts
March Madlibs - CampusCompare →
The 2009 National Douchebag Tournament |... →
January 2009
1 post
Yep I'm funny
[11:08:30 PM] drew wymore says: so anyways back to your middle class problems [11:08:48 PM] jennifer smith says: very funny… [11:08:56 PM] drew wymore says: what’s funny? [11:09:07 PM] jennifer smith says: my “middle class problems” but that is so true [11:09:28 PM] drew wymore says: you know I love you sis [11:09:41 PM] jennifer smith says: right now I just can’t...
December 2008
4 posts
Happy Birthday Wishes
I want to send Happy Birthday Wishes to Kieran who turns 10 today!
Songbird - Open Source Music Player →
Favorite part of a CL post
Just to clear things up, the following are NOT defenses to criminal charges: “I thought the cop was a prostitute.” “That crank was bunk, anyway.” “I just put my junk a little bit of the way in.” “I just dropped my truck off in the desert for 15 minutes. By the time I came back, someone must have accidently loaded 250 kilos in it.” ...
November 2008
1 post
Dialing Air Bases/Marine Bases in Japan with Skype
I came across an interesting problem tonight while trying to set up Skype to call my sister who recently moved to Okinawa Japan with her husband who is deployed to the Air Base there.
When dialing their phone number from a regular phone the requirement is 011 (signal international call) 81 (Country Code) 6117 xx xxxx where 6117 is the “base exchange”. This works fine, we had to do...
October 2008
2 posts
“Stage 1: Help, I see myself in every MC During this stage, we will study and...”
– best of craigslist : Missed Connections Support Group — forming NOW!
Yea wow ..
So lets see. Oregon Health Sciences University has concretely decided its Crohn’s. So what’s happened lately?
Crohn’s cost me my job at New Edge.
I’m starting Humira this week *hopefully*.
My leg keeps going numb/burning sensation (as if I don’t have enough problems).
I have been completely unmotivated to do much of anything. I’ve lost about 60 pounds since...
September 2008
1 post
POPsickleSTRIP: To The Death →
August 2008
1 post
» If Gods Were Drafted Like Fantasy Football →