Doctor's Orders

I went out to Philly last week to get an musculoskeletal ultrasound done on my hands. They're the only place in the country really that does it so far. It can be even more detailed than an MRI for some things. They found a lot thickening of my joint linings in my hands, but luckily no bone damage.

I'm back to trying to get off steroids again, and paying the price dearly as usual. Steroids are an interesting thing. They can vastly mask the symptoms of a great number of things; making you feel pretty okay. Even if you're very much not. When you're on steroids for a long period though your adrenal glands stop making steroids of their own. Tapering off steroids can make your body literally go into withdrawal if your adrenals don't 'wake up' quick enough. You get sweaty, nauseous. It's pretty much a 24/7 fight or flight response. Put that on top of whatever symptoms of your disease the steroids have been covering up.

I've been on steroids for so long, it's debatable if my adrenals will wake up. So slow and steady is the key, which is hard when all you really want to do is get it over with.

Why stop something that has such great benefits and such crappy symptoms to stopping? Artificial steroids are bad for you. The amount of steroids your body needs is far from an exact science, and changes throughout the day. An excessive amount of steroids in your system causes all types of crappy side effects. Major weight gain, bone thinning, organ damage just to name a few.

I've tried so many types of steroids including some designer brands. Injectable Acthar, delayed release Rayos, Solumedrol, all of which are ridiculously expensive. I've gone back to plain old Prednisone. You've probably been on it for a brief period at some point in your life for something. Doctors prescribe it for a myriad of reasons. Allergies, illness, inflammation, all to cover up the symptoms of whatever's making you feel bad. It's easier to taper with. It's also easier (and cheaper) to pop a few extra of on a bad day too, which is hard to avoid. Especially when you're feeling like crap.

I started tapering last week. My sugar levels have been all screwed up. Steroids increase the level of glucose in your blood stream. Since I have been on a significant amount for a long time now I take a diabetes drug to counteract the effect. Lowering the steroids is causing my sugar to drop very low. I've lost ten pounds this week alone from how goofed up my metabolism is now.

Once I get off it's going to be very hard to convince me to use them again for anything. While they make you temporarily feel better, they're just a mask that comes with their own set of problems. One of the people I follow that has rheumatoid arthritis has been steroid free for a few years now, and made the decision for similar reasons.

Especially with my age, a lifetime of steroids can do some serious damage.

I've also been trying to get off of Oxy and go back to Tylenol 3, but something tells me that's going to be a lost cause until I'm over the steroid taper for a bit.

My doctor (and my Mom) are going to be pissed when they find out, but I've also stopped my blood thinner injections. Was it dangerous as hell to do on my own? Yeah, but I'm a rebel like that. In all seriousness though, I'm no longer on the medication that I'm convinced caused the clots in the first place, and my CAT scan showed I was clear. It was a calculated risk. The injections suck, twice a day for something I was pretty convinced was unnecessary.

Health insurance has been crazy. Had to do a bunch of changes to my marketplace application and get Chris' employer to fill out a bunch of paperwork because of being married. Chris' insurance starts sometime in February. In the meantime I took a plan through BlueCross that's going to run us still $400 a month despite the $85 tax credit. It's a really good plan at least. The cheaper plans had crappy prescription plans that would have wound up with me forking out hundreds of dollars for prescriptions on top of the cost of insurance. People really need to be careful picking their plans. I'm good with insurance and I almost didn't catch the change.

Once Chris gets insurance in February I'm pretty sure I'm obligated to switch to his policy since it will be available to me, so I'm hoping it's good. With everything I have going on it's easy to quickly drown in co-insurance's and co-pays. If his plan is good the upside is we'll likely be saving a great deal of money. Which will be great for our budget.

The downside of insurance policy changes is the expensive infusions and medicines I get. I'm going to need to get re-approved with each policy change for my infusions which can be super time consuming. Plus then you have to re-meet deductibles and what not. The drug company's probably going to wind up comping me for a few infusions throughout the process.

Our electric bill was forty dollars under budget this month which was a nice surprise. I expected it to be higher. Especially with the two blow-up decorations we have outside. I think it just being me at home most of the day now really effects it too. I don't run much besides my laptop and Pandora.

Chris's work schedule is rough this week. He probably won't get home tonight until closer to 3am, and he has to be back in tomorrow at 11am. So he's not going to be able to stay up long after he gets home from work otherwise he's going to be beat. Tomorrow he works until 9pm, and then has to be back in for 7am on Sunday. I'll finally get some time with him Sunday afternoon at least. He gets paid on Monday, and works straight through until Christmas so it's going to be rough getting errands and Christmas shopping done. 

I've officially made over ten dollars from my blog which is awesome! I have it set to send me a check every time I reach a hundred. It's pretty cool to have a way to contribute to the household. Feel free to click on a few ads while you're here! Hah!

I have so many fun plans for this blog. I eventually want to reach out and connect more with the autoimmune arthritis and multiple sclerosis blog/online communities with this blog and feature some resources, etc with the links up top. It will take a lot of time and work though, and will likely wait until I complete my projects around the home. I think by this point in my journey I have a lot to share!

I've been watching Safyre's Facebook to see if I spot the Christmas card or jewelry I sent her. It's so nice seeing all of the kindness and love there. All of the good that can happen when people unite positively.

I love all the posts and messages I'm getting from friends and family that have gotten a card from Chris and I. Making others happy makes me happy. I'm loving all of the adorable cards I'm getting in the mail as well. I got one today from Ivy that seconds as a Christmas tree ornament and is so adorable. The picture of her dog Clark on it made me laugh. Becky sent me one today as well with a vintage truck on it, and an awesome pack of Post-It Notes. Those will come in serious use around here with my memory.

Chris is still less than halfway through his shift at work tonight. And I'm only about halfway done with my chores around the house. I've been procrastinating by writing this blog and perusing Facebook. I still have a big pile of dishes waiting for me in the kitchen. Plus I want to grab a shower and wash my hair tonight. If you're a spoonie you know how tiring that can be. I swear it's the hot water. In my defense though, my grandparents live in the apartment above me and I share hot water with them, and they've been getting their showers. So really I had to wait.

I've debated reorganizing our junk drawer and/or my makeup drawer tonight, but I believe it will wait for another day. I haven't had a lazy day in awhile.

I think it's time to make another coffee!