Mid-Year Check-In

I did a check-in right before the holidays and I think it is time for another one.

Headache

Physically:

Migraines are still in check. They come and go, and I take my meds when they show up. The weather and sun are two of my biggest triggers. I also have issues with noise and stress as triggers.

RA is no fun and I rate it 0/10. I struggled with a previously unknown sulfur medication based allergy for a couple of weeks, along with a stomach bug. I was miserable and ended up in the ER.

I have a great rheumatologist and if you aren’t that lucky, search until you find one. If you are in the Louisville, KY area, let me know. I’ll give you her info. Same for my neurologist. Bonus: he is adorable. Unfortunately, he is married with kids.

If you want to read more about my RA journey, you can read RA and Me Part 2

All joking aside, I guess I’m doing okay. I’m trying to do what I can on the good days and resting on the bad ones. Listening to my body is tough sometimes but it’s important that I do so.

Sobriety:

As of the date of this post, I am 2 years, 5 months and 5 days sober. That’s a lot of work, tears, and yoga.

It continues to be a daily struggle not to drink. I don’t think about it every day- I am well beyond that point. There are days, however, that one drink would make everything better. Or so I think.

Stress is a trigger.

Anxiety is a trigger.

Depression is an even bigger trigger.

If all three show up, it takes everything I have to not drink. I read. I color. I listen to music. I watch a funny movie. I talk to someone.

Whatever it takes.

Most Sundays, I go to a Yoga 12 Step for Recovery class. I found it on Facebook a few months ago and loved it. Sometimes I talk, sometimes I don’t.

If you’re in recovery, I highly recommend it.

Anxiety pic

Emotionally:

For the most part, I’m okay.

Anxiety remains a daily part of my life. I’ve learned to control it, deep breaths and slowing down are my main coping skills.

Depression creeps in when I don’t expect it, and it keeps me up at night. It’s not my friend at all, I shut it down when it gets to be too much. I may get quiet but that is me working through my thoughts.

What’s Next:

Summer vacation is coming for me! The kids have three days of school -then they can sleep in, play video games, and have lots of adventures.

I’m looking forward to this. We had a lot of fun last summer and want to repeat this. I’ll be working on the blog, a book, reading and listening to podcasts.

This is my mid-year check-in. It’s nice to reflect and see where I’m going next.

Where are you with your year? What do you want to do with the next six months?

RA and Me Part Two

I shared the story of the beginning of my journey with RA in RA and Me

I’m back for part two. I went back to my rheumatologist in March. It’s a new one because the original married and moved, but the one I got in her place is so incredibly nice.

The Official Check-In

I got a new set of X-rays and labs done to check my joints and various levels in my blood. Those X-rays showed slight inflammatory damage in both hips, but all the other joints are good.

The labs came back great. My liver, which gets a daily beating thanks to the meds I’m on, is back to normal functioning.

I’ve been sober for over two years, so this is fantastic news. However, I’m seronegative for RA, so one of the few ways that my rheumatologist can see anything is through X-rays.

If I happen to have a lot of inflammation when I see her, she can feel it or see an elevated white blood cell count in my labs.

I attempted sulfasalazine (an anti-inflammatory) for a month, but had a delayed allergic reaction. It turns out my sister (who has lupus) is also allergic to sulfur-based medications, but I didn’t know this until after I got sick.

My liver enzymes shot up and I spent a week mostly in bed. I lost a few pounds because I couldn’t eat. I had a full body rash, which was not attractive. I even had to push back my batch writing for that week.

I ended up in the ER for severe right side pain and that wasn’t fun. It turned out I had a stomach bug on top of this mess.

My rheumatologist immediately took me off this medication and I’m never touching a sulfur-based medication again. Yikes.

The Daily Grind

I have issues every day. Some days, it is a struggle to get out of bed. I am either too tired, in a lot of pain, or both. Some days, I feel great and can tackle lots of things.

Over Spring Break, I went with the kids to a silo in a nearby park, which contains 120 steps.

No problem. I walked up, down, and went home. I didn’t do much for the rest of the day.

The next day, we went to Bernheim Forest to see the Giants. They are large wooden structures, but this required lots of walking. We walked a bit over three miles. I was tired when we got home, and my right knee and hip had hurt a bit off and on.

Giant pic

Kids and I at Bernheim Forest, Spring Break 2019

I spent the next day in bed. I was exhausted. Everything hurt and I kept dozing off. I didn’t do much besides showering. Even so, I don’t let this hold me back. I have to live my life and do things.

My immune system is garbage but at least I won’t get malaria. Plaquenil has taken care of that. However, if you’re sick, I’ll probably catch whatever it is. Don’t even look my way…just kidding.

There’s still a lot that I want and need to do. Life doesn’t stop when you get a diagnosis such as rheumatoid arthritis. It changes and some days are tough, but I am not stopping.

My grandfather managed to live a full life despite his medical issues, one being RA. That’s my goal. I want to do fun activities with my kids, yoga, and other things. I just have to take breaks and otherwise care for myself. I have to listen to my body.

I’m trying to see this diagnosis in the best way I can. I have a lot of support, a great sense of humor and a good rheumatologist. Next up is a local walk for autism awareness.

It’s Not Always Easy

I took Julian and Lily with me to the March appointment- there was no school due to the teachers protesting in Frankfort. They were a little bored, but I think they may understand a little more what is going on.

When you’re a kid, it’s hard to see a parent in a lot of pain and/or tired a lot. This is even worse when you don’t get why. They have been a bit more understanding since then, so I guess it paid off.

On the days I can’t do much, I try my hardest to make things as easy as I can on them. I might ask them to help with laundry or other smaller chores, but that’s it. They are used to this because of the migraines, but it doesn’t make it easier.

I move slowly and the boys jokingly call me a turtle. I just tell them that the turtle can’t make dinner if she moves too fast and they get quiet pretty quickly.

Having RA is not easy but I choose to find a way to get through it, even on the bad days.

Are you a parent with a chronic condition? How do you handle it?

RA and Me

I wrote a post a while back about having chronic illnesses and being a mom. Chronic Conditions and Momming was written before my rheumatoid arthritis diagnosis.

1. My older sister has lupus and we had the same rheumatologist at one point. Once we discovered this, we thought it was hilarious. There’s a lot of rheumatologists in Louisville, and we ended up with the same one?

2. My grandfather had severe RA. He died in 2016 at the age of 83. His hands were curled up from the severe joint deformities. He took medications for it, but still had issues that weren’t able to be reversed.

3. I am currently taking a mild medication daily. I had to wait for my thyroid meds to be regulated before I could start RA meds. That sucked but things are good in this area. (Short version: I’m on Levothyroxine due to a partial thyroidectomy in 2017.) Joint pain is REAL.

4. My biggest issues? Joint pain in my hands, knees, and hips. Like many others, I’m super stiff in the mornings and it takes at least an hour to loosen up. Hot showers help. Moving around does help but also hurts. Eventually, the stiffness goes away. Usually. If it doesn’t, then it’s a bad pain day, which leads me to #5.

5. I don’t like taking pain meds. They make me tired and nobody has time for that mess. I usually won’t take them unless I can barely move. I’ll use a heating pad, massage, stretch, etc. The pain meds I do have, however, are non-narcotic.

My doctor is pretty smart- probably not a good idea to prescribe a recovering alcoholic hardcore narcotics. She probably enjoys having a license to practice.
Rheumatoid arthritis sucks. I hate missing out on things because I’m tired, hurting, or both.

Pic with Cameron

It’s possible to live life with chronic conditions. I have two. Some days are just worse than others. I can get through them with humor and my support system.

If you have a chronic condition, how do you get through it?

Post-Holiday Check In

I’m back with a post-holiday check in. Things went pretty well, for the most part.

Physically:

Not bad. Now that I have decent insurance, I will be able to get into my PCP for thyroid related bloodwork to make sure my meds are still at a good dosage. I can also go back to the rheumatologist. Yay.

The kids and I had a busy winter break- after Christmas shopping, skating, and a few smaller fun things. Tails and Miss Purr had a nice Christmas. All the activity wore me out a bit, but I made sure I got the rest I needed.

My 36th Birthday

My birthday was on 12/29. I got my hair cut, shopped and got lunch.

Sobriety

I celebrated 2 years yesterday, January 1, 2019. I will get a chip at the yoga for Recovery class that I attend this Sunday. I’ve never gotten a chip so this means a lot to me.

I know I’m far from alone in this struggle and I will continue to take things one day at a time. I think I need to work a tiny bit…okay, a lot more, on telling someone when I get into that space where I really want to drink. It’s a dangerous place.

Emotionally:

I’m slightly anxious because I start a new job on 1/7, which is also Cameron’s 14th birthday. I’m not sure where 14 years have gone. We decided to get him a cell phone, and of course there will be limits.

Lily bought her first purse and wallet, plus she now wears junior size clothes. She’s not a “little” girl anymore and now I want to cry.

I’m very glad the holidays are over because they’re always a bit stressful. I’m ready to start a new year, job and see what else happens.

Are you ready for 2019? What are your goals and hopes?