Tuesday, November 21, 2017

Ant bites, adjusting, and an auditory nightmare.

It's getting harder and harder to come up with catchy post titles for boring medical posts. The last couple of weeks have been kind of interesting. It's really strange to think it's been a year since my medical nightmare really ramped up. Last year August-October was follow up appointments and signs of other things were just starting to happen, but November was THE month for doctor appointments. I feel like I saw everyone and I started counseling. I don't remember much from that time but I remember my first therapy visit and just sobbing the entire 90 minutes. I wasn't sure if I was going to stick it out and here I am, a year later, and I rely on those visits so much. I honestly know that without those I would have been gone months ago.


Well let's talk about NEW diagnosis stuff and my adventures with new medication!

First up, rheumatology! My lab work was really funky and interesting in what it doesn't have. I test negative for Rheumatoid Arthritis (my mom has this) and Lupus, but my inflammation tests are through the roof. So clearly, I've got something going on. I have a lot of the signs of Rheumatoid Arthritis, like joint pain and stiffness, swelling, inflammation, fatigue, morning stiffness, etc and combined with the lab work I've been diagnosed with (wait for it)

Seronegative Rheumatoid Arthritis!

It's a strange way of saying Rheumatoid Arthritis, but I'm different because my blood doesn't have the antibodies present in other patients with RA. It doesn't mean anything special, but I might later on have those antibodies. The theory is my symptoms have come up first and the rest will come later. To treat this, the doctor gave my Plaquenil, two times a day. I was not thrilled with yet another medication but if it helped me move throughout the day without feeling like I've been hit by a car? I'll stand on the corner with a change cup if I have to.

So I started taking that. It took a couple of days before I felt anything but holy hell! You guys! I got out of bed easily, I got down the stairs without hanging on for dear life to the rail, I could have both Lucy and Penelope on my lap! I did not realize how incredibly crap my life was being in near constant pain. It was so great.

And then the itching started.

I saw in my pharmacy handout that itching is a common symptom. I didn't think I'd really notice it because with Diabetes Insipidus I drink an ungodly amount of water and my skin is unbelievably dry. I'm always putting lotion on so I figured it would be fine. It started out just annoying. A week in and I realize I am itching my ear raw, it was that bad. Then it was my arms. Then my back. Back to my face. Back to one arm.

You guys- it was HORRIBLE. It felt like I was being bitten by ants. All over. I sent a message asking if this is normal and is that going to fade out once I'm on it awhile, she responds and tells me to stop taking it immediately. Alright.

Cue two days later when I feel like someone has run me over with a car and I could hardly move. I could immediately feel the difference of no Plaquenil. I laid in bed weighing the pros and cons of the itching but honestly, it was painful. I looked online for other people's reactions and I guess the itching is very common but the severity is different on everyone. But the best part? It takes weeks for it to be out of your system. So that's great. I've been off of it a week and randomly the itching starts in one spot and even if you itch it gives you no relief because it feels like it's just under your skin.. enough the itching does nothing for it. Ugh. So I'm going through a lot more soothing lotion and hoping this quits soon.

Let's see, my other new diagnosis is Acute PTSD/Postpartum, which is PTSD derived from labor and delivery. It finally explains why I have a panic attack when I see pregnant women or newborns. I have had to unfollow a lot of mom pages on Facebook because the constant images, stories, and questions about labor and delivery were too much. I have this fear these women are going to die and I want to tell them, but I know it's totally crazy and nobody wants to hear MY story while pregnant. So I'm working on it in therapy. It's not easy. I have a new appreciation for veterans because I know they have it so much worse, but I understand not being able to control it and always having the fear of freaking out in the middle of a store. It's horrible.

And finally, I had it drilled home to me that I had a Traumatic Brain Injury, I need to treat myself as such, and it explains why I have Auditory Processing Disorder. Can I be stupid for a minute? When I hear TBI, I think of people who are vegetables, who can no longer function day to day as a result to an accident or something. My therapist, OT, and primary care doctor all explained multiple times that I'm wrong and this is what's wrong with me. I'm having issues with noise, primarily that I can't handle it. I hate the sounds of my children, I can't function when they are talking, the TV is on, Matt's asking me a question, the dog is whining to go out, etc- it's too much. I just shut down (in the form of yelling at everyone to shut the hell up) and I have to put myself in a time out. I sleep with ear plugs and I often have them in my purse to put in if I'm out shopping. If I'm listening to someone speak, after awhile it all sounds like Charlie Brown's mom and I have no idea what you're saying. Or me, if I'm speaking, after awhile I'll forget all together and it's like I can feel my brain shut down. This has been the hardest thing to adjust to because I feel like I can't function, I can't relate to people, I can't communicate, it's tough.

So that's my latest medical round up. I keep saying I hate having new things wrong with me, but at the same time, at least I know what it is. If I know that, I can find solutions or ways to cope. I keep saying that to myself at every appointment.

1 comment:

Julie H said...

That's a bummer that the meds made you itch, sounds like otherwise it would have been a good one.

I was watching The Fosters and one of the kids gets a TBI. Got a little education on that through Netflix.