Proper Handwashing

I must say, one of the greatest things I saw at the conference was the amount of handwashing. I'm not talking the splish-splash a lot of people do coming out of the restroom. Oh no. This was full contact, soap-and-water, honest-to-goodness excellent handwashing.

To be honest, I'm often grossed out by people's lack of hygiene. I mean, I'm no paragon in this area, but I do wash my hands like a pro. It's so important for the prevention of all sorts of nasty buggers. It's the most effective way to protect yourself from TB, C-Diff and a bajillion other nasties.

So good job, IDF Conference attending women! I saw you wash your hands and wash them well.

For more information on the benefits of proper handwashing, visit the CDC's handwashing website.

Conference Wrap-Up

I promised a run down of my experience at the IDF Conference in Baltimore. It was pretty good, as far as information goes, but I always feel like it's the same few sessions over and again. I am usually able to get a few granules of information from the talks, but I always wind up feeling like they are all for the newly diagnosed. And not necessarily the newly diagnosed with certain issues, but the straight up new to the community folks.

For example: I went to a lung disease session, as I was just diagnosed with bronchiectasis, because it was supposed to be about new treatment modalities. Instead, they spent the time talking about common complications, etc. Which is fine, but it's hard not to want a little bit more in-depth conversation about what to expect. I did get some indication that my doctors are doing the right things, which is nice, I suppose.

New this year were some encouraging prognosis statistics... for the 60% of CVID patients without autoimmune complications... so, not me. It's kind of frustrating for them to start trumpeting about new statistics and such when they don't apply to so many of the patients. It's sad, too, because one of the hardest parts of all this is not knowing what to expect. I expect positive things, but sometimes it would be nice to have some sort of reassurance from experts.

I was especially encouraged by the survey results from the survey on women's issues they took recently. It demonstrated that CVID patients can have normal pregnancies, normal children, and all of that. So that was nice.

I have to say, though, sometimes the conference is hard to watch. Why hard to watch? Because it's so poorly done from a logistics standpoint. It was very clear to me, with my meeting planner hat on, that they were trying to save money. How was this so clear? No beverages. That's right. No coffee for breaks, coffee was taken at the end of breakfast, and not enough coffee was provided for all that wanted it after dinner. The Hilton had clearly been given limits for how much to serve and when. Sad, when you consider that most of the population needs pretty consistent levels of hydration not to feel like poo. Why would you not move dinner to a larger venue instead of doing 2 seatings? Why not have more "safe" foods instead of mayo-based salads outdoors in the summer? Why were foods not marked for allergens in a community with high levels of allergies? Eating anything but meat-laden things would have been difficult, so I guess it's good I'm not a vegetarian, vegan, or gluten free. YIKES!

Next conference is in New Orleans. I have now fully learned my lesson and will make certain to bring my own food to the next one, or have some brought in, along with as much liquid as I can reasonably carry.

Reality Bites

I spent the past weekend in Baltimore at the IDF Conference (which I will get into in more detail later) and it was a good time to catch up with friends... at least for the most part. It always leaves me pretty run down, but this time it was an extra special dose of exhaustion.

On Saturday night, for the first night in about a week, I took my sleeping medication. I had a blissful night of sleep, about 10 hours. I woke up feeling pretty good... until I looked at my phone. Three missed calls from people who never call me (they usually text) and a flurry of texts. Uh oh. Come to find out, a friend had to go to the ER on the last evening of the conference. I'm actually surprised more folks don't have to go in, but she was the second (and I think last) that had to go, at least of the deficients I know. 

I get up at around 8:30, see all this stuff, hop in the shower, throw my things into my suitcase, then hurry over to the University of Maryland Emergency Department, where they were keeping my friend for observation. I'm really thankful I got over there when I did to help her explain things to doctors, etc, because it's really difficult to explain when benadryl has rendered you nearly unconscious and makes it impossible to focus. I was also able to use some of my lung knowledge gained by looking at scan slides to help explain to the docs what they were seeing with N's scans. That was good. 

I was certainly glad to be there to help her out, but it also set off some personal alarms with me. Perhaps my own fears of traveling alone are more warranted than I had previously thought. It's a little scary to see someone so close to you in age be in such need of assistance. I mean, we were absolutely 100% there to help her, but I wonder what would have happened if it had been me, alone, several hundred miles from home. As much as I would like to think I'm not limited by CVID, I really am in some very important ways. This demonstrates more than ever that I need a travel buddy always. I'm grateful that B was there on the other end to help me get my things out of the hotel and checked out and all of that, but I'm really trying to evaluate the plans I have in place and the ease with which my doctors can be contacted. It matters more than I would like.

Advocacy Day 2013

It is a cloudy, dismal day... But I hope it is also productive.

Funny Things on the Internet...

The internet is a wild and wonderful place. It's downright weird when you have a chronic illness. Especially one that is rare and people like to pretend they have. Also, if it is frequently misdiagnosed. But then, sometimes, there are special gems you see on the internet...

Things like the following:

I AM SELLING MY SON'S MILD HYPERBARIC CHAMBER TO GET HIM IVIG IF INTERESTED PLEASE MESSAGE ME.

Oh, internet crazy... A hyperbaric chamber is not going to do anything for the immune system. Why are you using it for CVID? Or do you just have an old one lying around that you're trying to sell to pay for your son's treatments? Did you get a chronic case of the bends and need an in-home hyperbaric chamber? I am intrigued... and, obviously, highly amused.

Just... Stop

A lot of people like to say "Common VARIABLE Immune Deficiency... because it is different with every patient!" It is and it isn't... and here's what I mean:

It's variable not because the presentation is so different (even though it does vary somewhat), but rather in large part because patient experience is so different. I have lung problems. Not all CVID patients do. I don't have GI problems, in large part, but a lot of CVID patients do. Some of us have sinuses that are worse than others, and no one really knows why some of us are so much sicker than others. That I will grant you.

BUT... and this is a BIG BUT...

The diagnostics are pretty straightforward. You do not have CVID if you respond to pneumovax. You do not have CVID if your IgG level is not 2 standard deviations BELOW NORMAL. This is a pretty low number, not just "out of range." Many many people are out of range and have no issues. It must be marked decrease in your serum levels. Ok? Ok. Now, with this reduction in IgG, you must also have reduced (or nonexistent) IgA or IgM. Not low IgG paired with normal IgA and high IgM. That's not CVID. Not. No. It isn't. Just stop. Also stop saying you have hypogammaglobulinemia when you have normal serum levels. Thanks.

I understand diagnostic criteria can change, but this has been standard for like 10 or 15 years. There are tons of folks who decide they have the symptoms (uh, what? You have fatigue? Definitely CVID ermmm no) without having reduced serum immunoglobulins and they respond to vaccine. I'm sorry that you feel crummy, but your feeling crummy is NOT THE SAME as mine. NOT THE SAME AT ALL. Yes, this makes me a little outlandishly ragey, but it has taken a long time to find people who truly understand, because so many people are like "I HAVE THIS" when they don't. You can insist all you like, but that doesn't change your blood chemistry.

I'm not saying you don't necessarily have a Primary Immune Deficiency, but what I'm saying is what you have is NOT what I have. So. In summary... JUST STOP.

Working Hard

No, I didn't forget I had a blog. Life just happened. It's already been a busy time, but it's about to get even more busy. Argh.

I had a tryout for Jeopardy! last week in NYC. It was so much fun! I am exhausted from the trip, but really glad I did it. It's one more thing I never thought I would get to do that I've done now. :-)

Lately, since the second bout of the flu, I can't seem to feel better or get enough rest. Work, even though it is a slow time right now, has become more of a challenge than before. Now I feel like I just want to go home, put something in the microwave and just vegetate. I don't. I make an effort to cook dinner and meet up with people and do things. Sometimes, I wonder why. I just want it to be like it was when I first graduated from college. I was so much better off then. I guess I will be better about this when I get accustomed to new normal. Right now, though, it's crummy.

Sometimes, I wonder if trying so hard is even worth it. Why can't I just fold the cards I was dealt and get new ones? Wouldn't that be nice? I'm tired of pushing. I'm tired of doctors. I'm tired of trying to play normal. I know I shouldn't hold myself to some "ideal" or "normal" that I can't attain, but it is difficult not to. It's hard not to say "well, that person seems to be able to do that just fine, why can't I?" It's hard not to wonder if there is a way to make life easier. There really isn't. And it's not as if I can stand on some street corner and proclaim how awesome it is that I am just able to make it through another week.

Sometimes, I wish more people could see and appreciate how hard it is.

Then my mom sends me this "Honey I love you so much and am proud of the way you work so hard at having a good life. I know it isn't easy." Somehow, it helps.