YMMFI

Emotional hurdles

Mon, 10 May 2010 00:25:00 -0400

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 often tougher to overcome than the illness itself.

The single toughest aspect of life after being diagnosed with CVID hasn’t been the fights with insurance to approve my treatment nor finding work after having been unemployed for nearly 2 years. No, the toughest thing has been trying to overcome the emotional and psychological effects of living with this illness. I spent nearly 3 years going from doctor to doctor trying to find a diagnosis, I scoured websites, I created a book of all of my records from July 2007 onwards and so much of my effort was put into trying to help those who were trying to help me figure out what was really wrong. Now that we know and I’m receiving treatment, switching gears in my mind and moving on with my life hasn’t been easy.

A large part of those nearly 3 years I was in and out of the hospital, I was going to various doctor appointments nearly every week and sometimes multiple times a week. I spent a large portion of that time sleeping simply because I just couldn’t muster the energy to get out and do anything. It wasn’t depression, it was my body attempting to heal itself from the numerous infections I was fighting. So often I was either fighting chest and sinus infections or diarrhea not to mention the polyarthritis. At points in time I was on so many medications I lost track of them sometimes.

What does anything I’ve written so far have to do with emotional hurdles? A lot actually. Even though I’m feeling better since I began treatment I still have some problems. I still battle diarrhea on occasion, I still haven’t been able to fully kick the chest and sinus problems that have plagued me since I was a child, the pain associated with those ailments along with the arthritis that has gotten better but has never gone away so every time I start to get the sniffles or a belly ache or I get up from sitting in a chair and my knees hurt so bad I nearly fall down I begin to worry. I begin to worry despite all the positive effects that IVIG has given me that just like the original diagnosis I received of Crohns Disease, that somehow we’re wrong and it’s not CVID even though everything tells us it is. I’ve spent so much time in doctors offices that I began even doubting my own ideas as to what was wrong and I still do sometimes.

I fear that when I go out that I might have a belly accident, it’s happened before. I often turn down invites to activities where there might be a lot of walking because I fear that my joints will catch fire and I won’t have my pain medication around to help soothe the flames. I spend so much time analyzing the sanitation of places I go, objects I touch and the people around me (did that guy just cough and not cover his mouth? Oh god). I’m constantly washing my hands and using that damn hand sanitizer to the point that my hands have at times become so dry that they’ve bled.

Even though I experienced all of the symptoms I’ve listed so far, they haven’t been nearly as bad as they were before treatment yet I still fear all these things coming back in the blink of an eye. These are the psychological demons people with chronic illness face every day even if they are receiving treatment, the fear of what if?

Photo

Wed, 07 Apr 2010 02:49:06 -0400

Photo

Sat, 20 Mar 2010 15:34:51 -0400

Photo

Thu, 04 Mar 2010 00:52:38 -0500

Hanging on by a thread

Wed, 17 Feb 2010 01:19:00 -0500

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, this is just a reminder that IVIG is not a miracle drug and I’ll have to keep getting it monthly to build up proper immunity.

The newest blood tests have shown some things going from semi-normal to worse and I’m faxing them over to my primary care doc so I can get his input. It appears that I’m now into anemia territory and having some issues with malnutrition despite the fact that my appetite has returned quite nicely in the past 2 months (my weight however has remained stable).

That’s about it for now.

Finally getting treatment!

Sun, 31 Jan 2010 05:05:46 -0500

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 nearly 3 years to the day to receive a reasonable diagnosis that everyone agrees with and treatment started.

One interesting thing I’ve managed to get a hold of during this most recent encounter with OHSU is my Immunology records. While most of the notes are short and curt, it almost seems as if they are as confused as everyone has been about what’s wrong given the conflicting information that my blood tests have revealed. They always seem to want to blame smoking on my increased White Blood Count, however historically it doesn’t hold water as a good theory, they don’t have access to the previous medical records that I do, I’ve looked at the blood counts and even when I smoked more than I do now, the counts were much lower.

Happy Birthday K

Wed, 23 Dec 2009 15:50:53 -0500

Giottos LCD lens

Wed, 25 Nov 2009 06:21:21 -0500

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, it SHATTERED even though I had used only a small amount of pressure to attempt the removal. The small shards of glass caused a couple of small marks on the actual LCD but nothing that is a shower stopper nor is it noticeable so that’s good. I saved the original Nikon cover and all is good again.

That said, the big failure in this piece of gear is that for 35 dollars, it should not keep popping off and to shatter from just a minor amount of pressure is disheartening. I won’t be purchasing another one that’s for sure.

Appeal Redux

Mon, 09 Nov 2009 21:11:03 -0500

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.

Moblin running on my Sony Vaio

Fri, 06 Nov 2009 06:12:07 -0500

Moblin running on my Sony Vaio

Why routing is good on a home network

Wed, 04 Nov 2009 01:35:27 -0500

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 interfaces active right now. The WAN interface which gets a dynamic IP assigned every few days and normally it changes. The Ethernet interface is static and is addressed as 10.x.x.x. It is connected to the Linksys AP which also has 2 interfaces. One of which is in the 10.x.x.x range connected to the Cisco and a 192.x.x.x addressing scheme used for wireless and ethernet connected devices behind it. This is known as double NAT (Network Address Translation).

Because the PPPoA address often changes, using RIP or OSPF or some other protocol is a better option than static routing given that with the WAN interface changing, I would have to manually reconfigure the routes every time I received a new address when the lease expired. RIP notices the change and within about 30 seconds will update the routing table without any manual intervention. Not having this route to the WAN interface on the Wireless AP is what was keeping me from accessing the internet but able to reach other LAN devices when I originally set it up.

Still pending appeal

Tue, 03 Nov 2009 05:05:18 -0500

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.

Cisco 678 and Linksys 54G integration

Sat, 24 Oct 2009 07:12:47 -0400

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

Thu, 15 Oct 2009 05:25:13 -0400

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.

Photo

Mon, 12 Oct 2009 19:00:09 -0400

The Moblin Files

Wed, 07 Oct 2009 23:26:02 -0400

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 Atheros Wifi Radio that’s built into this laptop. It’s not just ath5k AFAIK as wpa_supplicant seems to have a role in it too. The laptop will boot and run but when it attempts to associate with my AP (an ancient Linksys 54G that until last night was running the 54GL firmware) it receive the keys and associate then the machine locks up. I can’t see to get to another X session or drop to a shell or re-start X at all but it’s not a hard lock as I can use ctrl+alt+delete to force it to reboot. Since it’s not getting far enough to get an IP address I can’t ssh into it to see what, if anything is showing up in the logs. As mentioned earlier though it’s not an issue specifically with Moblin as using Fedora 10/11 this same laptop will continually drop it’s association with the AP and I never took the time to troubleshoot it since it didn’t cause a lock up. I just had to reboot the machine and it would work again fine for a day or two.

I have tried the 2.1 dev images and it seems to be a little better (newer kernel) but I have read via Google searches that there appears to be some regression with ath5k. Also, if it doesn’t lock prior to getting fully into the desktop and grab a shell session, I can turn of wpa_supplicant via /etc/rc.d/init.d/wpa_supplicant stop and just use the wireless tools package [iwconfig] as well as ifconfig to get a working network connection and it seems to work fine without locking nearly as often as when using wpa_supplicant. I tried to roll my own custom kernel using the vanilla sources from kernel.org and a branch of the Mad Wifi modules from www.madwifi-project.org but for some reason X barfs when I boot that kernel. It also isn’t really a proper work around since it violates the spirit of the Moblin Project as this branch not only taints the kernel it violates the “if it’s not in Linus’ kernel then it can’t be submitted as a patch) rule I was reading in the dev docs.

Stay tuned for more updates as I continuing fiddling.

IVIG Denied

Wed, 07 Oct 2009 22:54:41 -0400

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 and my condition, it’s possible I could end up hospitalized again for something, it seems like a bi-annual thing (2005 then 2007) so we’ll see. I can’t imagine it’s going to be cheaper for a 5 day hospital stay than it is for IVIG. I saw the bill that they paid for 2007, $25,000 bucks for 5 days.

What is frustrating is that it’s not as if the doctors are suggesting the newest medication out there or some new treatment that is expensive because it’s new. This is the only treatment available for CVID. Am I supposed to simply go on antibiotics forever and ever until they stop working and hope for the best? Hell, maybe I should just not be around people at all, that’d be cheaper then antibiotics wouldn’t it? Not that it makes any difference but neither Crohns nor CVID is something I did to myself, it’s not as if I was taking risks and doing things that put me in this position. I’m not asking for the world here Blue Cross, I’m asking for the treatment that a well regarded research hospital has said will make me feel better.

Still waiting ...

Sat, 26 Sep 2009 15:30:00 -0400

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 until it happens to them, that said, If you are able to donate blood plasma please do so as that is how IVIG is made and you could be saving someone’s life =) What better Karma can you get than that?

As an adjunct to the above, I want to point out that as much as I appreciate people offering to donate their blood to me, that’s not how this works unfortunately. IVIG requires tons of plasma from specific donors and then it is refined and cleaned up and tested for anything that could be harmful before it’s put on the market. The very thought that people are willing to do this for me though means a ton so I want to say (uh write) THANK YOU :)

CVID confirmed, IVIG is on!

Fri, 18 Sep 2009 00:57:12 -0400

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

Fri, 11 Sep 2009 20:54:42 -0400

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 Rheumatoid Arthritis which is good. The also did an x-ray of my hand and found progressive shortening of my fingers (wtf?) which apparently has to do with Reynaud’s Syndrome which they diagnosed on the spot due to the fact that my hands were ice cold in a 75 degree room.

The news is that the Immunology guys think that CVID is back on the table and the Infectious Disease guy may have lent some credence to this belief as he referred to my CVID tests indicating at minimum an IgG subclass deficiency, I never heard back from the Hematology guy on the Pneumococcal titers so I assume that was the issue that popped up, a quick googling says it would be an IgG Subclass 2 deficiency. Snazzy.

So, the Immunology guys want to potentially put me on IVIG therapy and see what happens (works for me, nothing like filling me with drugs/meds/blood and seeing what happens).

I have another colonoscopy on Sept 24th (this will make 3 if you’re counting at home). I am going to wager a decision about what to do next will be made after that procedure.

Cheers.