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.

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?

Humor Helps the Pain

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.

Trying to Shift the Hurt

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.

In the Spotlight

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?

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.

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?

New or Old? You Decide

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

Parenting Pet Peeves

Rebuilding Trust in Others

Broken Wings Part 4

Why Sharing Your Story Is Good For Healing

Everyone Has A Story

Over the past (almost) year, I have shared my story. It is not a pretty one, and that is something I knew from the beginning. It hasn’t always been easy. After I finished writing Love Through Bipolar, I cried. That was a hard post to write, but it needed to be written. It’s become one of my favorite blog posts. I think it’s because there is so much emotion and love behind it.

I’ve struggled with anxiety and depression for years. I was a teen when things started going a bit downhill- I have posts dedicated to this. The Journey Through PPD is about the time after Julian was born and I had a battle with Post-Partum Depression. A Letter to my Anxiety and Depressionis just that- a letter to what holds me back from feeling things as I should or doing things as I would like to.

But yet, I still didn’t see the point of sharing my story. I didn’t think it would help anyone or change anything. My life changed again right in front of me as my marriage fell apart and I started drinking heavily, but I was in no shape to talk about it. Everything fell apart the day Jake died, and the aftermath was nowhere near easy. Thankfully, I went into therapy. My therapist helped me develop coping skills and tools to be able to rebuild my life.

Rachel once asked me how I could make something good out of losing Jake. This was a hard question to answer at first. I had no idea how this would happen, because losing him has been one of the worst things I’ve ever experienced. It took a while, but I decided on two things: volunteering for the American Federation for Suicide Prevention (AFSP) and creating this blog.

Going on A Mission

Sharing your story can be rough, and that’s normal. Everyone decides to do so at their own time- some start at the beginning of their journey, some wait a while, like I did. If I had, most of my blog posts wouldn’t have made sense- I was far too drunk to be creative. What makes someone want to tell their story?

1. Helping others. This is a big one for me. Helping others helps me deal with my loss and helps me stay on track with my sobriety. I know I am far from the only person that has lost someone they loved to suicide. This is a sad fact. I’m also not the only mother out here trying to stay sober. Being a mom who doesn’t drink is not easy these days, especially when there are wine jokes everywhere and kids are stressful. Telling my story of getting and staying sober reminds me of how far I have come and hopefully gives others hope that they can get there too.. I have read a lot of comments thanking me for telling my story of coming back from losing Jake, and it does help a lot, especially on the bad days. It helps me continue Jake’s love of helping others. This is something else that helps me heal.
2. Helping yourself- processing can come in many ways. I wouldn’t have been able to start this blog much before I did- August 2017 was almost two years after Jake’s death. I needed that time to heal and figure my life out. It wasn’t the easiest process. I did write in journals that became the beginning of this blog. As you write, sometimes you realize things that you hadn’t thought of until then. Writing allows me to let out the things that I cannot say for some reason or another, and this is common in many writers. I’ve been able to look back some of my earlier blog posts and realize how far I’ve come and where my thoughts have changed. This is a good thing.
3. Marking milestones as you go through healing. When you are deep in grief or in active addiction, you don’t see milestones. You barely see the next day. As of July 1, I’ll have 18 months sobriety. That’s something I wouldn’t consider in 2016. I thought I would just keep drinking forever.

If you decide to tell your story, please take care of yourself. Take time to unplug if you need it. Disconnect from the internet, take a walk, listen to music, whatever you need. It will refresh you to keep moving.

Pics courtesy of Pinterest