This happened to me. I am still struggling a little bit, so bear with me if you spot a typo or mystifying word that makes no sense and or doesn’t belong where it is. For example, I typed WORLD instead of word. But I caught it and went back and fixed it. But back to where I was.
YOU’RE A WRITER, AND THEN SUDDENLY YOU’RE NOT
My body is having a little body world war. All kinds of things going on in there, all caused by a lovely little Nazi Dictator called ADOLF AUTOIMMUNE. Now AA thinks he runs the world inside my body, and he likes it there when things are bad. So he kills off all the good autoimmune cells and then laughs a maniacal (BWAAA-HAAA-HAAA) laugh as the few good cells left pull a Three Stooges return and smack each other around instead of working.
This is my interpretation of CVID, because I am not a doctor, and quite obviously never will be. Thank your lucky stars.
The day I found out I had CVID, my immunologist came in and sat down (kinda next to me–not real close, but kinda the closest he has ever gotten to me) and showed me my blood results. Another doctor, my ENT, noticed that the IgA 4 subset (don’t ask) was low, which was why after 14 days of twice daily infusions of Vancomycin, I was not getting better; the sinus infection would NOT RETREAT. He spotted that abnormality in his testing and immediately sent me to the immunologist.
Now we are back to the part where the immunologist sat down, but that backstory was important so just listen, okay? He showed me my blood test. He said, “You’re problem is not that small little subset. Your problem is here, in the big G. The IgG. Then he showed me the levels and said “you have a rare disease called Common Variable Immunodeficiency.” Yes, I am still trying to make that rare fit with the common, but it doesn’t work so don’t try. What the “Common” in CVID means is just that it is the most common of the rare immunodeficiencies, and that “variable” means there are lots of them. I think.
Anyway, since the day he told me I needed IVIG treatment and that I needed to take this very seriously and realize how dangerous it was (he pointed at my PICC line that was being used for the Vanco and said “I don’t like that. We don’t like our autoimmune patients to have PICC lines. It’s dangerous.”) he has never gotten that close to me again. He does not shake hands. He is not overly friendly. He didn’t even ASK to see my shingles when I got them. Other doctors had seen them. That was enough for him. I think he’s turned into a germaphobe because of his speciality. God knows I have.
At any rate, it took a few months and some working with the insurance company (no shit) to finally get the treatments going. Wednesday, I had my third. The last two I have just suffered through the severe headache and nausea that follows the infusion (AA doesn’t like it when foreign antibodies invade, trying to take back the land of Autoimmune and make it so I can look at a kid with a snotty green nose and SURVIVE it without getting a MRSA.)
Just in case you are wondering, MRSA is married to AA. They like to get together and create nasty infections. Hah! I will explain MRSA in a minute.
This time, I planned ahead. That headache is, on a scale of 1-10, a 15. I had some leftover Percocet from the shingles so I took one. Ah. Just a slight throb. So I ask Dr. Distant to PLEASE prescribe me some Percocet. Now, apparently, this was a mistake from the get go. Don’t ask a doctor straight out for Percocet. You have to play the game Go Fish with them first.
“Do you have a Lortab?” “Nope. Go Fish.”
I am not up on my addict behavior, so I didn’t know that asking outright is a no no. This girl ain’t from the ‘hood. Not only did I ask him for PERCOCET, by name, I asked for THREE DAYS WORTH only. I bet he stayed up all night trying to figure that one out. How was the addict going to survive on three days worth of Percocet? Did I know something he didn’t know? Was the end of the world coming in three days, and was that why the addict only wanted three days worth?
Whatever conclusion he came up with I got LOTS of Tramadol instead of three days worth of Percocet. And there things got fun. My head would not talk to my fingers. They were mad at each other. I could not communicate. I’m A WRITER AND I COULD NOT WRITE. I panicked. I cried. I insisted I go to the hospital and they FIX ME. Birdman calmed me down (a few hours later) and the truth was small. I am scared. I was scared. FEAR. I’m afraid of this damned disease and I’m afraid to lose my ability to communicate. That is NOT supposed to be a symptom of CVID.
Today, the buzzing in my head isn’t as bad, and today, I can actually get my fingers to type what my brain is thinking… sort of. But since last Thursday I have been a hot mess. Yesterday, I called my home health nurse Troy and asked him about all the weird symptoms. He told me to go to the emergency room. But then he also told me that even if he came over to see me he would have to tell me to go to the ER. It’s policy.
So I didn’t go. Because the hospital is the one place I shouldn’t be. I could go play in the ball pit at McDonalds during midwinter and lick all the balls and I would be safer than I am in a hospital. (Yes, that made me throw up a little in my mouth.)
This creates a small dilemma. If you are very ill, where do you go? The hospital. Nope. Me? Not a clue.
Unless I lose a limb, have lost consciousness, am throwing up blood or any of those things, I am supposed to stay far, far away from the hospital. In the hospital lurks the BIG DOGS of infection. Klebsiella (had it); Streptoccocus (had it); Enterobactor (had it); and a few others. In fact, I have FIVE MRSA infections in two years time.
MRSA stands for Methicillin-resistant Staphylococcus aureus is a bacterium responsible for several difficult-to-treat infections in humans. It is also called multidrug-resistant Staphylococcus aureus and oxacillin-resistant Staphylococcus aureus.
Today, I am feeling better, although Doctor Distant and I are going to have a little talk. Distantly.
But now you know what is wrong with me. I am CVID and I am proud! Um, no not really. I want it to go away.
The truth is, I have had this all my life. I was misdiagnosed at age two, and told I had Celiac disease, because back in the dark ages Celiac was today’s Fibromyalgia
Stomach and bowel trouble? Failure to thrive? CELIAC DISEASE! But, but, but, what about all these repetitive sinus infections and bronchitis infections I get. (Obviously, I didn’t say that, because I was two and no child genius.)
Celiac disease! I don’t care if the test comes back negative every time! You have Celiac!
All the fucking years I spent not eating cupcakes and cookies and bread and…. Ay yi yi. Pizza! I should sue that dead doctor (because this was a long time ago) just because of all the PIZZA I missed out on. Truth is, I got used to it so I still eat that way. We just aren’t as careful.
CVID often mimics Celiac disease. Therefore, I can’t really blame the doctor, although I have to wonder about those negative tests. How do you reconcile those?
So there you have it. I have become…. The writer in the bubble. I have more Lysol than anyone known to mankind. I spray everything. I do NOT go to WalMart or other stores. I do not hang out in the McDonalds ball pit. I am, as my former doctor called me, TYPHOID NATALIE. Hear me roar.
The IVIG is supposed to help, and it does. I had 18 good days last month. I enjoy acting like an normal person, even if I have to fight back the urge to shout out “Don’t touch that!” when I see a baby pick up a toy I know is going into their mouth.
“Here, give me that thing. I’ll fix it. Spray it down with half a can of Lysol and you’re good to go.”
Kidding. I only think these things. I do not poison babies. Monsanto does that for us without us even asking.
One thing CVID has given me is time. I HAVE to write or I will go mad. So since I have a lot of writing to do, it works well. I am working on revisions for my next St. Martin’s book today. I can also work on my school work, because I can do that at HOME. ONLINE. YAY ME!
I stayed really quiet about this, because I don’t like that kind of attention. I don’t want to sell books because people feel sorry for me. I’ve had a hard time with people offering to do fundraisers, because I feel like the money should go to that OTHER PERSON. I’m really good at being the rah-rah-rah Cheerleadah! I don’t do so well for myself. But the truth is, my COPAY for the IVIG is 1200. 1200 A MONTH. I need to play the victim, because in this case I am, but no matter what I do, I can’t. Instead, I want to fight the fucking insurance companies and drug companies who are kicking ass with money coming in. Yeah, I’m pissed. No, I don’t have a choice.
My infusion is performed monthly at home. It’s around five hours tops. I have a home health nurse I like.
I’m okay. I’m the writer in the bubble. The internet is my whole big PERSONAL bubble. Thank you Internet.
So now you know. I was NOT drunk when I posted that really weird status. Well, maybe the one before that, but NOT this one…..
And JUST because I think more people need to know about CVID because even medical people say “Huh?” Here you go.
Oh, and the one time I bucked up and went to the hospital and I told the doctor I did not get fevers or raised white blood cell counts, and he asked me how he was supposed to diagnose me. Guess? Should we do stool samples? Remember that time, Dr. Comedy? I’m going to get you. Watch out. It will be coming. Or maybe I’ll just write about you in a blog and then I’ll feel better. We’ll see. Jackass. Callyourselfadoctor. Moron. Fucktard….