Okay, I know that seems odd, but there is a reason I’m in love with the fact that I have a pretty nasty cold. In the past couple of years, when I would get a virus, I would get a flare. The flare would inevitably be worse than the virus. Prior to IVIG, I had a headache, and I just shrugged it off. Behcet’s and headaches are just hand in hand for me. Then after IVIG I had what I classify as an IVIG headache. I felt just, well, sh*tty for a couple of days. That is normal, from what I’ve read. Even if the rheumatologist’s temporary coverage felt as though I should have made some miraculous turn around, I knew from what I’ve read, and what I’ve heard first hand from other patients, that it would take some time.
Then I realized I had a cold.
I was sleeping a lot, had a little fever, and attributed it all to the IVIG. Except, the sleeping eased up, as did the headache, and my nose was bleeding and stuffy. I blamed the weather. I had a migraine, which happens to me when the weather shifts. I blamed a lot of stuff because I didn’t want to believe the IVIG wasn’t working. This morning, it dawned on me. I have a cold. I have a gross cold, and my gastroparesis is acting up because my appetite came back, and I overate.
Folks, my appetite came back.
I haven’t been hungry in months, and suddenly having that drive to eat again was so bizarre. I will always have gastroparesis, my celiac artery is blocked, and it can’t be opened. I also have a history of GI issues that just bogs the system down…but my intestines are moving again which is the main reason (I feel) that I wasn’t hungry. For me the delayed stomach emptying causes gastritis, acid reflux, and bloating/pain. The lower GI ulcers kill my appetite, cause pain and bleeding, and just generally make me miserable. That seems to be tied in more closely with the Behcet’s.
Beware: I’m about to discuss poop.
I have been pooping. Not as often as “normal” folks, but I am pooping. Prior to IVIG I was going 10-14 days between bowel movements, and those movements were pathetic. Nausea, pain, blacking out, just total brutality, for the smallest bowel movement. Doctors often accused me of “pushing too hard,” but I never pushed. Why push when there isn’t anything causing any urge to push? Lately I’ve been panicking when the urge to go hits me. It sort of comes out of nowhere, and is like, “YOU HAVE TO GO NOW!” Of course, it isn’t that dire. (Except when I ate a gummy edible containing gluten. I got horrendously sick, pooped my pants, and couldn’t figure out why. Later it dawned on me that gummy candy often contains gluten, so I checked, and yup, the edible was the culprit.)
My point is actually pooping is weird, and it shouldn’t be, but it is. I am torn between excitement and nausea. I’ve tried explaining it to healthy friends, but only a similarly GI sick friend understands it. When you just don’t go to the bathroom often, your body can’t really handle the sensation. My nervous system is so used to not feeling anything positive from my gut, that even a normal bowel movement is misinterpreted (at least that’s how it feels.) Hopefully with time I can get used to them again, and hopefully they remain consistent. Even going just 1-2 times a week is an improvement right now.
I have to talk to my rheumatologist about putting in an order for a port, even though I know she will fight me on it. The reality is that I’m existing in a state of malnourishment, or dehydration. The only reason I’m not currently losing weight is that I stay on top of calories, and my thyroid gave up working. It isn’t a healthy way to prevent weight loss, and I’m still losing loads of muscle. I can’t do my infusions 2x per week for fluids and vitamins, unless it isn’t an IVIG week. Even the week after IVIG is dodgy, since they have to use two different veins for IVIG (unless I go home with the IV in place. This is something I’m not comfortable with because of issues with phlebitis and clotting. I just don’t personally feel it is a good fit for me. I’m also sure my dogs would find a way to hurt it.)
The other issue I’ve run into, emotionally, is the expectation others have that I’ll be miraculously healed by IVIG. IVIG is a treatment protocol, it isn’t a cure. There may be a day when I can go off of it and be in remission, but going off of it is risky. With neurological issues involved, it just isn’t something I’m overly in a rush to test out. Some people spent their lives on IVIG. I will need medications for nausea, I will need IVIG, I will need my wheelchair at times (though hopefully less as time goes on). The damage done to my autonomic nervous system isn’t all fixable, in fact, some issues will definitely remain, and that is okay.
IVIG wasn’t about a cure. It was about survival.
I have a tendency to downplay the seriousness of symptoms when talking with friends and family. It’s something my family has a tendency to do. There are issues we still need to address with me cardiovascular wise that I put on the back burner. They’re likely related to the autonomic stuff, but we just won’t know until we look into it. The biggest question mark is the swing in my heart rate. I have some serious bradycardia sometimes, and it is sort of terrifying. I don’t think about it unless I’m on a heart monitor, and I’m setting it off, but it’s taxing on your heart to get super low, and then go back to normal or even into tachycardia. Again, I’m hoping IVIG fixes things by stopping the onslaught against my autonomic nervous system.