YMMFI

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?

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.

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.

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.

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.

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.

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.

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.

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.