It is a cloudy, dismal day... But I hope it is also productive.
Thursday, June 27, 2013
Wednesday, June 26, 2013
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:
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.
Thursday, May 30, 2013
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.
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.
Wednesday, May 29, 2013
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.
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.
Tuesday, April 30, 2013
Next Steps... Lung Spa Day!
I saw my pulmonologist yesterday. I have been SUPER GOOD AND COMPLIANT with my airway clearance, but I'm still not feeling great. The pulmo thus decided that it is time for me to have a bronchoscopy. I'm not thrilled with the prospect, but it makes sense given my situation. We want to see what's in there and what the best approach will be going forward.
I go in on Thursday morning to have my lungs scoped and basically washed out. I've taken to calling the lavage portion a spa appointment for my lungs. Friends tell me this can be pretty miserable feeling, but that it can help you on the road to recovery and to feeling better in the long run. I am hopeful it is that way with me, so my lungs can get rid of the gunk in them and the airway clearance can help keep them clear.
Not that I really want to have a bronchoscopy or lavage or any of this. Sometimes, we just don't get a choice. Sometimes, we just keep moving down the path because we're supposed to and because, in the end, it's what is best for us. Still, though. This stinks. Another thing to add to my list of surgical procedures. ARGH.
I am quite thankful to have a treatment team that I trust. This is one of those times that I have to remind myself of that. I would rather not need them, but I'm so glad I have them when I do.
I go in on Thursday morning to have my lungs scoped and basically washed out. I've taken to calling the lavage portion a spa appointment for my lungs. Friends tell me this can be pretty miserable feeling, but that it can help you on the road to recovery and to feeling better in the long run. I am hopeful it is that way with me, so my lungs can get rid of the gunk in them and the airway clearance can help keep them clear.
Not that I really want to have a bronchoscopy or lavage or any of this. Sometimes, we just don't get a choice. Sometimes, we just keep moving down the path because we're supposed to and because, in the end, it's what is best for us. Still, though. This stinks. Another thing to add to my list of surgical procedures. ARGH.
I am quite thankful to have a treatment team that I trust. This is one of those times that I have to remind myself of that. I would rather not need them, but I'm so glad I have them when I do.
Thursday, April 11, 2013
Say Hello to My Little Friend...
It's all fine and good... except I got zero training with it. Nothing. I did get an instruction sheet for how to clean it, so I guess I should be grateful for that? Sigh... It's always something. I had to track this sucker down for 2 days trying to make sure I had proper authorization or whatever I needed... and now I get to figure out how to use the darn thing.
Monday, April 8, 2013
65 Roses
No, I don't have Cystic Fibrosis. But! I do get to pretend like I have it and do their airway clearance method with hypertonic saline!
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.
So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?
The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.
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