It’s a tough life sometimes living with a chronic illness…I wore myself out at work today and I’ve got ice packs all over me.
People don’t always get how we feel and what thoughts we have. Let’s remember how awesome we are, no matter what we are struggling with.
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.
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.
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.
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.
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?
Everyone has their own defense mechanisms- ways of dealing with things that they may not like or want to push to the side. These mechanisms keep us from having to deal with unpleasant feelings like sadness, anger, confusion, etc.
Humor can be a defense mechanism for many of us. I am guilty of this. I use humor, mainly sarcasm, a lot, to cover up for when I am sad, hurt or feeling otherwise not so great. I may not want to face how I am feeling at the moment. I may not want to show the person that might have hurt my feelings that they did so. I’m not the best at doing this. I tend to feel guilty- it comes from my past with Matthew.
He would get angry when I would even show a hint of being upset at anything he said or did that would upset even the hardest of women. I learned to hide it all, at the expense of my mental health.
I didn’t laugh my way through being emotionally abused, because that’s impossible, but there are other facial expressions for it. It became a regular thing to hide my sadness, pain or being offended. This is still present for me. I don’t think it will ever fade. Even if I had left, this would linger.
Using humor allows me to remain the funny person that everyone knows me to be and not fall into the deep hole of depression that I desperately want to stay out of.
It doesn’t take a lot sometimes, and there are times that I don’t know what will bring me out of it. It lets me keep going when I might just stop otherwise. If I stop and start crying, when would I stop? This question does not have an easy answer.
Many comedians/comediennes began using humor to cope as kids due to tragedies and/or bad childhoods. Making other people laugh helped them feel better plus it was a great distraction for them from whatever they had going on in their lives.
Some comedians also have mental health issues and this helps them cope, for example, the late Robin Williams. I was sincerely crushed by his death. I still get sad watching “Aladdin” and “Mrs. Doubtfire”.
I didn’t have the best or worst childhood, but genetically, I hit the jackpot when it comes to humor. I have two older sisters, and I’m the funniest out of the three of us. My mother is hilarious and so was my grandfather. My dad lacks a sense of humor- he’s a bit like Eeyore from “Winnie the Pooh”.
I’m not sure when my sarcasm blossomed, but it’s been around as long as I remember. Cameron has picked up on it, and even though he was a little late, so has Julian. Dry humor is his thing. Their childhoods have been miles better than mine so they’re just funny because they can be.
There is a reason we like to watch funny movies or YouTube videos when we are sad- it takes our minds off whatever it is that’s bothering us. We need a distraction.
I have watched “Horrible Bosses” countless times because it’s funny and I know almost all of the lines. I also know that Charlie Day uses the Epi-Pen incorrectly but yet it’s still comedic. I still yell “OMG THAT’S NOT HOW YOU USE IT!” at the screen each time I see it. (I’m First Aid trained, and while I have never had to use an Epi-Pen, I hope I never have to.)
Laughing makes us feel better, even if it’s only for the length of a movie, song or 6-minute video. The phrase “Laughter is the best medicine” is true. It can truly lift your spirits.
How do you get a laugh when you are sad? Do you use defense mechanisms? How do you try to not use them?
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.
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?
These posts are old to me but new to some. Enjoy!
The Reality Check (for Domestic Violence Awareness month)
Song Lyric Saturday with Kendrick Lamar
