The physical and emotional tolls a condition takes on the body along with the longing to be ‘normal’ are hard to cope with when an illness is ‘invisible.’
This next one is a great resource for you to arm yourself with tools to get others to help you. Asking for help is NOT a form a weakness. On the contrary, asking for help is knowing your limits and knowing that you can’t do EVERYTHING yourself.
I found out I was pregnant a week-and-a-half after my husband left for a year-long Army deployment. Up until that point, I was sad that he’d be gone for a whole year, but I never thought I’d be dealing with such an emotional situation while he was gone!
It took me more than a month to really reign in my emotions and accept the situation for what it was: I was pregnant. He was gone for a year. I couldn’t change anything about the situation.
The thing I could control was how I mentally dealt with it. And after realizing that, I knew I had to come up with a plan. My plan includes the following four tips to help me deal with my pregnancy while my husband is gone. My hope in sharing this with you is that you can take some of these tips and incorporate them into your life as well.
Click this article to read my 4 tips on dealing with a pregnancy while your spouse is deployed overseas:
Last year, my friend Alyssa started a new venture, The Journal Deck. The premise of this love project is to bring journal prompts and oracle cards to life. Picking a card each day, The Journal Deck provides you a journal prompt to explore.
When Alyssa announced The Journal Deck, I was really excited. Personally, I think journaling is a fantastic way to work toward healing. My own healing journey is rooted in journaling, however this activity doesn’t always come easy to some. How can we reap therapeutic benefits when chronic pain and arthritis prevents us from putting pen to paper?
I’ll take you through my journey to illustrate just how I was able to keep journaling in my life.
Back in 2012, I started working my way through the book Mind Over Medicine by Lissa Rankin, M.D. In it, she has almost 100 questions to work through. (You can download a lot of the questions in her healing kit here.) These questions helped me identify areas in my life that I needed to work past, and to let go and others that I needed to more fully embrace. It wasn’t until working through my journal that I was able to readily identify the shifts I needed to make in life.
The Self-Care Spotlight podcast, presented by The Journal Deck, had me on and we chatted about self-care and journaling. Not having the ability to journal wasn’t something that Alyssa had completely thought of before. And to be honest, it’s not something I had thought about until I wasn’t able to do it.
Within the last year-and-a-half, my hands began to cause me more and more problems. Before, I could stream consciousness all day and write in my journal. Now, after a page of writing, my hands tense up and I start to have a lot of pain.
I have friends within the arthritis community who have experienced these same problems. Recently, I feel like it’s been a topic that has kept coming up more and more.
So if we aren’t able to write, does that mean we have to miss out on being able to log and reflect on our thoughts? Absolutely not.
At first, I missed journaling on a superficial level. I missed the therapeutic benefits or writing out my thoughts and identifying thoughts I didn’t consciously realize I had. It wasn’t until I couldn’t write that I realized how vital journaling was to my treatment plan. Not being able to write was impacting my health.
Each of us will have our own solutions, so I urge you to try different modifications. The following five tips have helped me. Perhaps they can help you continue to journal in some way, shape, or form!
Many of my arthritis friends — psoriatic arthritis, rheumatoid arthritis, lupus, osteoarthritis, ankylosing spondylitis — can still gain the benefits of journaling by making a few modifications.
To learn how to modify and manage your journaling practice, click to read my tips in the following article:
Recently, my friend Alyssa started a new venture, The Journal Deck. The premise of this love project is to bring journal prompts and oracle cards to life. Picking a card each day, The Journal Deck provides you a journal prompt to explore. When Alyssa announced The Journal Deck, I was really excited.
I definitely urge you to check out these 5 tips and let me know if any of them work well for you!
I still wholeheartedly believe that the best way to manage psoriatic arthritis (whether you’re on or off medication) is to focus on these 5 principles.
Whenever I found out I was pregnant, one of my biggest concerns was the fact that I was on medication. I had been taking Otezla and had taken a few opioids the month prior to help manage an influx of pain I had due to rigorous activities. It’s been a few months since I last updated you on my Otezla journey (my last update was here), but I do have to say that my Doctor and I decided that I should stop it.
Well, it was definitely a personal decision. I truly felt that, at max, I was getting MAYBE 50% relief from my symptoms with Otezla. Sure, it helped a little bit, but I didn’t feel like it was making a dramatic impact on my psoriatic arthritis.
I was more worried about the potential risk it provided to my baby. There are studies showing that researchers don’t believe that it causes harm to unborn babies, but there aren’t any studies that show that it IS safe for pregnancy. Because of these factors, I decided to stop the medication.
I recently had a chance to do an interview with Stat and talked about this exact thing. Many pregnant women are worried about medications and pregnancy. And unfortunately, the research just isn’t there to put your mind at ease one way or another. (Click here to read the article)
One website that I thoroughly suggest to any pregnant mom out there is MothertoBaby.org. They have ongoing studies of individuals who opt-in to submit their data for research. Upon realizing they had an Otezla study, I signed up to help. I’d at least like to contribute my data to help future Mama’s out there decide if stopping or continuing their medicine is the right thing to do!
For me, I believe the right decision was to stop the Otezla.
I should also mention, that when I decided to stop my Otezla I also decided to stop most of my supplements. Why? For the same reason as the medications. There was nothing that showed they were safe for pregnancy. The only supplements that I continued to take have been my B12, Spirulina and I added a Pre-natal Vitamin. Again, the research just isn’t there!
But stopping my medication and supplements then brought up a whole new concern. How was I going to manage my psoriatic arthritis sans medication?
Even when I started Otezla, I never strayed from the 5 main principles that I truly believe help manage psoriatic arthritis: Diet, Supplements, Toxins, Meditation & Mindfulness, and Yoga & Movement. Upon stopping my Otezla, I knew I was going to have to be even more careful and pay attention to these things 100% (minus the supplement part).
On top of that, I knew there would need to be a few extra things to add to the mix to help me manage. And what are they? Well, I recently wrote this article for HealthCentral talking about the 7 ways I’m managing my Psoriatic Arthritis during pregnancy to help share what’s working for me!
I suggest you take a few moments, click on this link, and learn what’s been helping me during this pregnancy!
Being pregnant often means going off certain treatments for psoriatic arthritis. But there are still many ways to keep symptoms at bay.
In sharing this article, I also think that this one is worth sharing as well!
My friend and fellow Psoriasis blogger Sabrina (from Homegrown Houston) has written a lot about dealing with psoriasis and pregnancy. I think this HealthCentral article is a fantastic resource you should check out as well!
Credit: Lulu Lopez Photography While living with a chronic, autoimmune disease like psoriasis or psoriatic arthritis, self-care is vital to your health. But when you’re pregnant, self-care seems to take a back seat. No judgement – you’re carrying another life inside of you!
And if you’re looking for one more resource, I’d suggest my friend Joni (from Just A Girl With Spots). She’s a Mama of two who’s blogged a lot about her journey with psoriasis and pregnancy.
At the end of the day, since we’re all unique, we will find different ways to manage our psoriatic arthritis and psoriasis during pregnancy. But, one thing that was can do is to learn from each other and try our best!
Just remember, at the end of this journey you’re getting the absolute best present you could ever receive. So do what you can, accept the things that are out of your control and enjoy the ride. It’ll be a crazy 9 months!
Back in middle school, my doctors didn’t want to put me on “heavy duty meds” because I hadn’t even gone through puberty. And, come to think of it, it was the mid 90’s so biologics were probably not indicated for juvenile use yet.
In 2012, when I did start on them, I wanted everything and ANYTHING that would help me. I didn’t weigh my options or list the pros and cons. I heard that it could help me and I was like “sign me up”!
But now, I have a much different thought process. YES – they help. YES- they can be life-changing. BUT, do I want to take them?
There’s so much to consider when deciding to go on a biologic. I’ve written a few posts that I’d love to share with you that can help you make an informed decision.
First, I wrote this post about the different types of biologics and biosimilars that are approved for psoriatic arthritis (as of the date of publishing).
A few years ago, I was at my wit’s end. After being in pain for months, I ended up in the hospital for a week-long stay. I wasn’t sure what was going on with my body and I wanted answers: A diagnosis, a medication, a surgery-anything. I just wanted relief.
And third, I’d like to share 3 success stories with you. Biologics can be life-changing and can really help you manage your conditions. Don’t take my word for it, take these 3 ladies words for it!
“I have been on pretty much every biologic (injectable) that has been approved for PsA.” _ It seems like a broken record. A patient has psoriasis, they begin to have joint pain and it takes a while for all the pieces of the puzzle to come together.
Back in middle school when a doctor mentioned it, my family and I had NO idea what it meant.
In 2012, when I was “officially” diagnosed with it…. we still had no idea what it meant. All we knew was that golfer guy had it since we saw him talking about Enbrel on TV all the time.
Sure, you could say – well Julie. Just because you didn’t know about it doesn’t mean it doesn’t get enough attention. And that’s fair. Whenever you’re not thinking about something consistently, you don’t necessarily notice all the places it pops up.
But having been paying attention for a few years now, I can tell you it doesn’t get enough attention. RECENTLY, in the last year or so, there has definitely been a push for more awareness. Before, the Arthritis Foundation rarely mentioned it! Now they have their own PsA publication (which is great!). There was even a commercial on tv JUST for psoriatic arthritis that ran this last year. And more and more pharma commercials are poppin’ up about it as well.
So there is a shift being made. . . but there still needs to be more awareness. And because of this, it drove me to write the following article.
My ask to you is to read it and then share this post so that others realize that we need to bring more attention to this condition. No, it’s not rheumatoid arthritis. No, it’s not just psoriasis. Psoriatic arthritis is it’s own thing and DESERVES attention on it’s own as well.
I was in middle school when a rheumatologist told me that I “probably had psoriatic arthritis.” Back then, I dismissed the notion completely. “Arthritis? Me?” I thought. “I’m not a grandma. I couldn’t have arthritis. No way.” In those days, we didn’t have the internet at our disposal.
What do you think? I’d love to know your comments below!!
Patient expert Julie Cerrone reflects on how she got her start with the National Psoriasis Foundation, and how advocacy can shape one’s life.
This article is important to me because I feel like others should know why I support the NPF as much as I do. They’re a great organization and truly out for Patients. There are some foundations out there that don’t always have the patient’s best interest at heart (*cough* Koman *cough*)
If you want to be an advocate, there are so many places that you can start. But here are two articles, written by two of my top advocate friends that I think are tremendous resources.
The WEGO Health team gets a lot of emails from patients and caregivers wondering where to start in order to become a great patient leader and how to get more involved with WEGO Health. We’ve created this guide to help those of you just starting your patient leader journey to get the most out of your…
Check them out and then let me know what you think of them!
Wishing You A Pain Free Day!
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