I have Behcet’s. Seriously. I have it. You can doubt it. You can tell me it’s rare. You can suggest we retest for lupus markers over and over, and maybe someday I’ll have lupus, too…but that won’t mean I don’t have Behcet’s. I tend to rejoice when I see the same doctor in an ER, or when a new specialist is excited to see me because they rarely get Behcet’s patients. When someone looks at me with the, “sure you do,” facial expression, and starts to lecture me on rarity, I can already feel the needle stick of the impending blood work.
What makes it worse, is that it took seven years for me to get a diagnosis. During that time the cocktail of drugs thrown my way was endless. Even now there is always a shuffle. What to take for PTSD, that doesn’t impact the seizures, which may or may not (I’m leaning towards may) be related to my Behcet’s and all the drugs that I take for that. When you’re chronically ill, you become sort of an expert at things like, titrating your steroid dosages, and which over-the-counter drugs work best for a variety of ailments. You also know when something is ER worthy, urgent care worthy, or can wait for a visit to a regular physician.
When I say, “I’m not your doctor,” I’m joking. Truth is I don’t mind telling you what you should take for that cold, or why your child’s rash is something to worry over. If I have to live with feeling like crap a majority of the time, and catching bugs on a pretty regular basis, the least I could do is share the information I get from those experiences. I recently helped a friend with some steroid dosing, because Medrol dose packs are great, if you need a whole dose pack. If you don’t, then you’re going to experience all the fun side effects for no reason. You can do a slower titration of the meds by just taking them like you would a 4mg pill, instead of following the dose pack instructions.
I am in no way condoning the people reading this blog to disregard your dose pack instructions. If your doctor gave you a dose pack, and told you to take it per the instructions, follow the instructions. I am on a specialized protocol with dose packs, I take two, one in reverse order, then one in normal order, because I can’t handle the packs the way they’re prescribed. I follow my doctor’s advice. PERIOD.
That disclaimer out of the way, let’s be real, people self medicate. They have meds laying around, and they wonder, “would this help or hurt,” and I’m often the one they turn to.
As for life…stress is destroying me, but I’m taking it a day at a time. I can’t do anything but push forward, take my meds, and be thankful the current flare I’m experiencing is mild. It’s my fault, I was a few days late with injecting because I changed injection date and forgot, and I’ve been stressed which doesn’t help.
File for disability already.
My soon-to-be ex-husband likes to constantly push me to file for disability, because he thinks this will somehow magically fix my income issues. Even if I qualified, the low amount I’d get wouldn’t help as much as actually working does, which is the point. I can work. Yes, I had a rough few months, I had a kidney infection, followed by bronchitis, followed by knee surgery, and another kidney infection. This set of flare,s which set of seizures, and all in all it was a messy fall/early winter.
He thinks if I can get disability, his alimony will be lower…but that’s not how this works (cue the commercial “that’s not how any of this works”). Getting disability is hard, and it’s also something that I firmly believe should be reserved for people who really need it. I am not going to slow the process down for others, when I’m capable of working part-time. Right now I’m lucky, I work from home, and I do most of my school work from home. Hopefully I can get on a new med protocol, and stay healthy.
Just stay healthy…easier said than done, but it’s going to be one of the mantras for 2016.