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?

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?

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Why Sharing Your Story is Good For Healing

A Beginner’s Guide to ADHD

The Dangers of Ignoring Mental Illness

Is It Time for a Mental Health Break?

Spoonies: Behind The Theory

If you have followed this blog for any amount of time or looked at my social media, you’ve probably seen a post or two about migraines, rheumatoid arthritis, or both. I’ve had migraines since 2013 and was diagnosed with RA last year. Neither are fun and if both kick in, it’s a bad day around here. I’m battling a flare as I write this. If you want to read my previous posts on either illness, you can read:

RA and Me

Chronic Conditions and Mommimg

Invisible Changes

My Update- Migraines and RA

Due to having less-than-stellar insurance, I haven’t kept up with my rheumatologist appointments like I should be. This should be changing soon, as I am waiting on new insurance possibilities. Once this clears up, I’m going to schedule the first appointment I can get. I know I need to be seen.

I’m taking Plaquenil daily, which is an anti-malarial drug that helps with the major symptoms of RA. It does help the joint pain, fatigue and other issues that I face. I’m hoping to stay on it as long as possible because some of the harsher medications have some really bad side effects.

A flare is when the pain gets really bad and you’re exhausted- it’s like the flu, but you don’t have the flu. I also have severe nausea. I keep peppermints by my bed and crackers in the pantry. It can last a few hours, days or even months. They can be brought on by a number of factors but mine are usually brought on by stress, lots of physical activity, or both. I try to take it easy on myself, but sometimes it just isn’t possible.

This past weekend was a beast. I go to a yoga class on Sundays that center on recovery and that has been helpful- but then my house was being appraised so it had to be massively cleaned and family events occurred. I had fun, but I don’t think my joints did. Friday was a complete bust, and I just lay in bed, napped and did research on my phone for the posts you will read this week.

In general, I feel okay most of the time. My main issue is fatigue, but then, my thyroid also sucks. That’s not a great combo. I’m on levothyroxine for the rest of my life, due to a partial thyroidectomy last year. This medication makes up for what the remaining part of my thyroid isn’t able to do. Some days, I’m ready for bed at 7 PM, like today.

Migraines are terrible creatures, and I hope none of you reading this have them. Mine have continued to lessen over time, which is delightful. At one point, they were occurring at least twice a week. I had to get nerve blocks in my head and neck to help reduce the number and severity of the migraines.

These, as I have discussed, run in my family, and Cameron has been the latest one to inherit them. I’m the only one, however, that has had one that resulted in a mini-stroke.

I’m so glad the migraines have decreased. They really do wreck your life, even if you have nothing planned the day you have one. I feel like I have my life back, in a way. My next health update will hopefully be better, complete with bloodwork done for both RA and thyroid because I’m way overdue for both.

The Spoonie Theory

This theory was developed by a very bright woman who happens to have lupus. Christine Miserandino was asked by a friend to describe her units of energy because they’re pretty limited. (My sister has lupus, and that is rough) She gave her friend a handful of spoons and took one away as she listed the activities in her morning routine. Each activity took at least one spoon. You can find this information on Urban Dictionary

I like this theory- it takes a lot more energy than many people realize to just get out of bed sometimes. Going down my stairs can take twice as long as it usually does when I first wake up versus later in the day. My joints are super stiff when I get up, like many with RA, and it takes extra energy to move. Taking a shower can be exhausting. I’ve never used the spoon theory to explain my energy levels to people, but it makes a lot of sense.

People understand the topic of chronic illness better if there’s a visual involved, right? I know I do. This theory can be used for people with many illnesses like (this is just a short list)

• Multiple sclerosis
• Depression
• Fibromyalgia
• Leukemia/any kind of cancer
• PTSD
• Endometriosis

How Can I Save My Spoons?

I try to make things easy on myself. I tend to keep easy-to-cook meals around that I can make on bad days, or that the kids can help with. I wear clothes that are comfortable so that if I fall asleep in them, it’s not such a hassle. I’ve fallen asleep in jeans during a migraine and I don’t recommend it. 0/10.

I have a running to-do list, which I prioritize by time and energy levels. If I can, I shop online, and when I do have to go to the store, I make a list. This saves money and energy by not having to backtrack constantly because I forgot things.

Other tips:

• Enlist help when you can. My kids have become a bit more self-sufficient at an earlier age than I liked due to the migraines, but I’m okay with this.
• Keep necessary things close to you. If you’re low on energy, keep your “must have” things close by so you can stay comfortable while resting.
• Try to plan things out so you don’t become overwhelmed.
• Try to stay positive- it does help reserve mental energy.

Staying Happy While Chronically Ill

This can be difficult sometimes- I struggle a lot with positivity when I don’t feel well. I have a weird sense of humor, and I have found that helps the most. Chocolate is a close second. How can you stay positive?

• Surround yourself with supportive and positive people. I have friends, family and a husband who will help me out when I need it, even if I don’t want to ask.
• Comedy. YouTube is great, Netflix, and in my case, I have a Pinterest board with thousands of hilarious pins. My best friends send me lots of memes when I’m laying in bed because I can’t move. It helps me forget the pain. This doesn’t work for migraines- at that point, all I need is sleep and meds.
• Remember it’s just a bad day, maybe two, but not every day is bad.
• Doing what you can. I have to remind myself of this one a lot. I’m used to going at full speed from when I open my eyes until I go to sleep. RA has made that a bit hard- I’ve had to scale back. I do get irritated sometimes. It’s normal. Do what you can and leave the rest for another day.
• Find something you can do that makes you happy on the pain/bad days. I love podcasts and reading. Those are great distractions on the days I need it most.

If you are a spoonie, I would love to chat. If you are okay telling your story, please comment or fill out my contact form. Thanks!

Pics courtesy of Pinterest

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Small Steps to Self-Sufficiency

At the Top of My List

On the list of things to do as a parent is to teach your child to take care of themselves. I am a fan of this on many levels- I don’t want my kids to go to college or move out barely able to take care of themselves.

Matthew didn’t do his own laundry until then, and I was like, “Wait, what?” I had been doing my own laundry since I was about 12 or 13. I’m not a great cook, as we all know, but my mom attempted many times throughout my childhood. For the record, my mom is an amazing cook.

I also realize that I won’t be around forever- this became super real to me after my stroke in 2013. Yikes. Since that stroke, I have struggled with migraines and now rheumatoid arthritis. The migraines have gotten better in the last few months, but they are a permanent risk. I will be on medications (pretty much) forever to prevent them.

I was diagnosed with RA last year, but I’m not sure how long I had symptoms. I’m not the best at tracking these things, plus I’ve been on medications in the past that cause joint pain, fatigue, and a few other issues. (Thanks, Depakote.)

I’ve written about having RA in RA and Me Unlike my grandfather and many others, I have been lucky enough to get a diagnosis early so that my joints have a chance at not getting entirely destroyed. My grandfather died in 2016 at 83, and his hands were a major problem. He couldn’t write for years before he died because his fingers were curled up due to severe joint malformations.

These medical issues are less than fun and some days, it’s a struggle to get out of bed, much less wash clothes, cook and other things. Kids are pretty demanding. My post Chronic Conditions and Mommimg discusses this in more detail. I didn’t like the idea at first, but I’ve had to ask my kids to help out a lot more. Both boys can do laundry, cook (somewhat), wash dishes, and other things. Lily has been a bit more of a challenge, which leads me to the next topic.

Kids Need a Bit of Encouragement

Some kids don’t need a lot of words- just tell them what to do and let them be. Lily is not one of these kids. She gets overwhelmed very easily and we have to break chores down for her- I have to make a list of what to clean up in her room. It takes less than five minutes to do and even though she moves at a snail’s pace, her room does get cleaned.

I stopped cleaning it months ago. It’s time-consuming, she’s old enough to do it on her own and honestly, I have other things to do with my day. Every kid is different and that needs to be taken into consideration.

Tips for encouraging your child to do more on their own:

• Take a couple of steps backward. Sometimes we tend to stand right in our kids’ way when they are trying to do something on their own. Let them try the task, resist the urge to correct or change what your child has done and praise their work. They need to hear that you think they did great, even if there were a couple of hiccups. Perfection is less important than you think it may be.
• Break down the task. I do this often for Julian and Lily. They have different needs and this is a way to make things a lot easier. There are fewer tears on their end and less frustration on mine. Don’t hesitate to walk them through the task if needed and then back away, slowly letting them gain a skill.
• Time limits can help build confidence. Get your child started on a task, then let them work on it for a certain amount of time on their own.
• Give them a clue, not the whole answer. This can be very helpful with homework. A small clue towards the answer may be all they need to get the answer on their own. If they can’t find something, give them a hint on where it might be or the next step in a process.
• Make a list of things that your child can do for themselves. You and/or your child may not realize what they can do. A list may allow your child to say what he/she feels they can do on their own and what they still need assistance with.

What About the “I Can’t Do It” Kid?

Some kids have anxiety about getting chores or other tasks done because they are afraid they can’t do it right, which they don’t want to show to anyone, sometimes leading to defiant/avoidant behaviors.

The main focus on fixing this issue is to find out what is making your child so anxious- are they worried they will take too long, they don’t know how to complete the task, it’s too overwhelming, etc. There are invisible factors but yet they can be a large roadblock.

• Try talking to your child. He or she may open up about their worries and you may be able to find a solution. If they don’t, try small questions at first. This may help.
• Offer to help get the task (ex. cleaning bedroom) started. A small nudge may help a lot, especially at the beginning of trying something alone. A kid’s room can be a big space to clean if they’re scared they can’t do it alone.
• Remind them that perfection is not the goal. I used to be a perfectionist, but I just don’t see it as a thing anymore. (My former therapist helped a lot with this idea.) They don’t need to make their bed perfectly the first, tenth or even fiftieth time they make it. Learning a new life skill and the effort is a lot more important. For example, Cameron put three laundry pods into one of his first unsupervised loads of laundry. He thought I would be mad, but I told him that his and Julian’s clothes would be super clean and smell wonderful.
• Remind them that everyone makes mistakes and they are still growing. Kids tend to forget that they are still growing and that they will mess up. It’s okay.
• Encourage them to take a break if things get too frustrating. This can be useful for almost anything, but kids need to know this is an option. This might be a relief.

Think of helping your child become more self- sufficient as beneficial for everyone: you, the parent, get a few extra minutes in your day and your kids learn a lesson. It’s a plus for the family.

Do you have tips to add? Do you have a kid who refuses to do anything for themselves? I’d love to hear about it. Leave a comment or find me on social media.

Information courtesy of: Developing Minds

Today’s Parent

Parenting

Pictures courtesy of: Unsplash