If you were an intergalactic traveller and had the Hitchhikers Guide to the Galaxy in your pocket for advice, one thing you would know (because it's written in big, bold letters on the front cover) is DON'T PANIC. Well, I apparently lost my copy of the Hitchhikers Guide because I panicked last night. Big time panic. I'm calmer now, but man did I ever get worked up. I found out that Hana's friend who she hung out with on Saturday got spots on Sunday and was diagnosed with chickenpox on Monday. I also saw her friend on Saturday and got all of my B cells blown to smithereens on Monday. So I panicked.
Why did I panic? Because there are two things I've been afraid of contracting since being immune suppressed - pneumonia and chickenpox. AND chickenpox in an immune-suppressed folk like us Weggies, can lead to pneumonia (and encephalitis - ughhh). Again, I panicked cuz those things can kill us. I know, I know, it sounds so melodramatic, but I've been really good and calm about the whole process so I'm allowed to have a freak out once during the disease process. This was my freak out. When your B cells are gone, your immune system goes back to being where it was when you're a newborn, not much memory of what you've had or have been immunized against. I know that there are still some B cells that aren't killed so I'm hoping I have a few of those that can pull me through this, probably overblown, crisis.
I spoke with my doc and she ordered a blood test to see if I have antibodies for the virus and if I don't then we'll treat with blood product to protect me (IgG - I think). We'll hopefully know by Friday where I'm at with all of this and where we go from here. We will separate me and Hana for a bit just to be sure - which is a total bummer. Total! But gotta do what we gotta do to make sure we're around each other for a long time in the long run. I hope this doesn't mess up my RTX treatment ( I have a second round in two weeks time) as that will be a huge waste of time, money (the treatment is worth $10,000) and health.
I panicked my friends too on Facebook, so I feel like a bit of a putz. There's nothing I can do about that now though.
I keep telling Hana that a big rule in life and survival is DON'T PANIC. You can never make sound decisions or control your body or surroundings if you're in a state of panic, apparently though I should listen to my own advice a little better.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Well, I have had a couple of panics since I got the disease too. Hugs - And hope you didn't get the virus.
ReplyDeleteAh, Marta. It's great that you now have an action plan. Being on top of a solution is an excellent antidote to PANIC. But consider that other advice from Hitchhiker's Guide: Be a hoopy frood who always carries his (or her, as the case may be) towel. The other thing to note is Biblical: There are always rams in the thicket; you just have to use your towel to shoo those sacrificial critters out.
ReplyDeleteNevertheless, the PANIC is understandable. A lot of things about this disease are nasty nuisances. But you have, in fact, a compromised immune system--not a non-existent one. As tough it is (on all of you) to be without your family for a bit, you are right to consider the distant future. With that in mind, this is just a minor bump in the road.
Remember that towel, and sleep now.
Al
Thanks Al and Cyn. I kinda feel foolish because in the midst of my panic I posted my feelings on Facebook, and now I am a little embarassed. I actually reacted to this much much worse than I have reacted to anything through this entire journey. I've thought about it since and I think it was because I've been so careful and consious about keeping myself safe and eliminating any risk from my surroundings and this came up (one of my two fears) at the most inopportune moment - right after I obliterated my B cells and suddenly felt very very vulnerable to any invader. I completely lost it, which in turn freaked out my mom, dad, sister, husband, and possibly even daughter - who all have seen me through this and have seen me keep it together pretty well. I have really come to my senses now because of said plan. I will find out tomorrow what up with me, and Hana will go in on Monday and get a blood test to see if she's got antibodies, then we'll decide whether we shall be together again before the next infusion.
ReplyDeleteOn a slightly different note, I just watched a new "Shit people say... " video this one was "Shit skiers say", I've seen "Shit girls say" and "Shit yogis say", I'm strongly considering making a "Shit Weggies Say" video. We have some great lines.... Stay tuned - ha ha ha. Phil from the forum probably has some of the best lines....
Oh and Al, yes the towel... I also would like to have the Babblefish - then maybe I could have a good conversation with my autoimmune system, wouldn't that be a brave new step into a cool new frontier.
ReplyDeleteAh, the Babel fish...So, literally the shit fish say. Perhaps this could make Weggies communicate better, though, in no case am I ready to call our disease Mostly Harmless. Neither do I wish to play Netball with the Bartledanians; I'm not such a Best Sport that I could be an indifferent loser....
ReplyDeleteI have to remind you, Marta, that you didn't obliterate all your B cells, but, at best, maybe ten percent of the total True, this is the subset, the plasma effector B cells that manufacture ANCA, but the point is that it isn't correct that you are reverting, immune system-wise, to infancy. The memory B cells are pretty protected. This is, for Weggies, a mixed blessing. Nevertheless, your immune system is not entirely dead in the water.
What the doc is surely discussing for you, assuming the worst, is IVIG--IntraVenous ImmunoGlobulin, which consists of IgG rich serum from healthy donors. It is used when patients with comporomised immune systems need to battle an infect--just as in, possibly, your case (that is, those with no antibody manufacturing capability. The vast majority of antibodies in the immune system are of the IgG type. This includes nearly all ANCA, but you won't find ANCA in your IVIG juice; It will be clean stuff.
Take note, Marta, that--as Eddie suggests, "You'll Never Walk Alone." We apologise for the inconvenience.
Al
I totally understand the panic, Christmas holidays where my painc. The kids ( mostly young adults) did not get it at all. Your Dad is immune surpressed, we will not be going to the family party's we will have smaller one on one visits thru-out the holidays. No, I do not think you should be making the rounds at all these places and then coming back to our house to share your hitch-hickers... the conversation back and forth to these adult children just pissed me off... I talked to the Dr's and they said if they were going to insist on going to these functions Mike should wear his mask when they are around! Why should he have to be one bit more uncomfortable because of the lack of consideration, Yes I felt like the bully, cause the man with the disease says...oh well I am not going to live in a bubble! Well the powers of the universe handled it all, the oldest one got the flu and could not travel and the younger one went off to the boyfriends family and stayed away for a few days. Bliss.....and well karma kicked ass!
ReplyDeleteKari
Karma Rocks. I love it. Especially now that I'm generally a good girl - ha ha. I'm glad that you didn't have to deal with the extra stress of trying to be a nice guy and make everyone happy while keeping the body safe. Bliss is good too. Panic, not so much. I hate that I reacted that way, but it was my first and hopefully last time during this process.
ReplyDeleteAl, wow, you Douglas Adams fan you. I keep finding more and more things about you that I like. Thanks, yet again, for the education on this ride. I'm so glad to have access to your wisdom and amazingly analitical mind. Thanks for giving me peace of mind. That, these days, is worth more than anything else (other than the hug of a five year old and/or her daddy). THANK YOU! As far as walking alone, it's ironic that I feel less alone now having this rare disease, because of the wonderful people I have met "virtually" from across the globe - people I truly feel connected to without ever having seen them/you in person - than I have ever felt in my life before. True heartfelt connections, probably better than some people will ever have in their lives with the people right in front of their noses. I feel blessed on so many levels. Oh that Eddie, he knows what he sings.