What It’s Like to Live with RA

I should say up front, that my RA is mild to moderate. I am seropositive, which means my disease course is likely to be more severe, but I feel pretty good most days right now. And I have every reason to hope that diet changes (like trying AIP) and lifestyle changes (like hitting the gym and practicing relaxing self-care) along with medications will slow my progression and possibly even put me into remission completely!

Most days I wake up a little stiff, morning stiffness is one of the hallmarks of RA. For me it’s usually in my back and hips, which makes it hard to stand up straight when I first get out of bed. My joints also tend to pop and crack like crazy those first few steps in the morning. I’m like a bowl of rice crispies walking to the bathroom to start my morning routine.

Some mornings I skip breakfast and choose to fast, but when I eat breakfast I usually grab something quick like yogurt with berries or leftovers I can quickly reheat. I like to sleep in as much as possible. Sleep is super important and I am a person who needs a lot of it, even before my diagnosis. So if that means I don’t have time to cook my own breakfast every morning, that’s a sacrifice I’m willing to make.

I head to work around 8:45 am, and when the weather is nice, I’m fortunate to live close enough that I can walk to work! It’s just under a mile, so it’s a great way to get in some good movement and vitamin D sunshine at the beginning and end of the day. (I was so tired this past summer that I rarely did this, I have been feeling well enough to do this 2-3 times a week so far this year!)

I’m a librarian and I’m fortunate that my position keeps me moving throughout the day. I’m not on my feet all day, nor do a sit all day, I’ve got a good mix of resting and moving which is good, it keeps my joints from gelling up from being in one position for too long. One of my early symptoms was hip pain after sitting for an extended time. A couple times I even got up after sitting for a long time and thought I had sprained my ankle! But the pain went away by walking around for a little while.

Sometimes at lunch I walk home to let my dog out for a little midday break. (Just because she can be in her kennel all day doesn’t mean she likes to, so I try to give her breaks as often as possible). When I plan to stay at work for lunch I try to pack something healthy. Often leftovers or a salad with some protein (chicken, shrimp, hard boiled egg, etc.). Sometimes I also continue a fast through lunch. I actually try to fast a full 24 hours once per week, from dinner one night, to dinner the following night.

Afternoon is when my fatigue tends to set in, so I really try to “Eat the Frog” and try to get the highest priority or most difficult stuff done early in the day when I have the most energy.

After work I usually head straight home. Often my energy stores are zapped for the day, which is why meal kits have come in so handy for me. Not having to think about what to make for dinner, or spend much time prepping ingredients is so helpful when I’m exhausted at the end of the day. Still, I also try to use evenings as time to build community and challenge myself intellectually by going to Bible study, book club or taking classes at the local community college.

Before bed I’ve started an oil pulling routine (more on this in a later blog post), which is also a great time to pop in some ear buds and do a guided meditation. I wash my face and use organic witch hazel toner and then aloe as my moisturizer. If I am having any joint pain I use topical CBD ointment and/or Max Freeze to help alleviate symptoms without needing to take an NSAID. (Though I do take aspirin or ibuprofen when needed, and per my doctor’s instructions, I always try to take the minimum effective dose – so if I can spare my kidneys and gut lining by not taking an NSAID for pain, then I will. NSAIDs help with symptoms of RA, but they don’t halt disease progression).

Then it’s off to bed by 10:00 pm so I can hopefully have a full 8-10 hours of sleep to be ready for the next day!

If you have RA, or another autoimmune disease, what is your day like?

Now that was my usual weekday, but Saturdays are my me days – check out the new vlog to see what a Saturday is like for me!

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How To Make a Health Log

This is a video of how I created a DIY health log. It’s a little bit bullet journal with a dash of traditional planner, but focused on tracking my health. If you are trying to make a lifestyle change or are dealing with a chronic condition I highly recommend making a health log of your own.

The resources I used to make mine are listed below.

Avery Heavy Duty 3-ring Binder

Plum Paper 18 month planner (monthly)

Symptom Tracker –  (as I mentioned in the video, mine is a personalized version of this tracker)

Avery Pocket Dividers 

This is not a sponsored post. I pay for everything I try out of pocket so that you know my reviews are unbiased. Though some links are affiliate links for products I would recommend.

Simply AIP Supscription Box Review

Simply AIP is a new subscription box service specifically for the Autoimmune Paleo community. Though I am not full AIP yet (I am still baby stepping my way to complete elimination), I wanted to try out the box to see if it would be something that would help make the AIP lifestyle easier to adopt and more manageable to stick to for long enough to see results.

Overall, I really like the contents of the box. I think the tigernut butter was most exciting for me because it’s something I had never tried before and had heard good things about. Like most subscription boxes it comes with coupons for discounts on any of the products you really like, and it is a great way to sample products you might not have access to otherwise, or might not be willing to pay for full size. The only product in the May box that I wasn’t super jazzed about was the Epic Bar, as I mention in the unboxing video, I have tried Epic Bars before and I’m just not a fan of the meat and dried fruit combo. (I do love Epic Pork Rinds and Crackling though…).

For around $40 bucks I felt I got my money’s worth, enough to go ahead and keep my subscription for the June box. I am not sure I will continue to get it every month, but I was glad I tried it and I am looking forward to trying all the snacks! Stay tuned, because I will review all my favorites here on the blog.

Have you ever done a subscription box before? If so, what was your experience? Do you have another one you’d recommend I try next?

(This is not a sponsored post. Though I do use affiliate links for products I would recommend, I always purchase products out of my own pocket so that you know my review is unbiased)

Notes From the Crunchy Journey

So I went to see my first rheumatologist this past week. Overall I felt the appointment was good. The doctor let me just list all my many symptoms (mostly pain related) that have come on over the last couple year. Then we ran more blood work, took x-rays and did a physical exam. I was not sure what to expect, but I really liked that she let me just spew symptoms at her and at the end of our appointment she asked if I had any questions. Which I did (because I went prepared), only one of which was pressing.

All the tests came back a couple days ago and she called me to follow up. Not her nurse or a medical assistant, she phoned me directly. That was nice, and almost a first in my experience with allopathic doctors. She is pretty sure I have early stage rheumatoid arthritis and wants me to start taking heavy dose NSAIDs and a mild first line DMARD.

Even though I really liked this doctor, I am still planning on seeking a second opinion. With something like a chronic autoimmune disease I feel I have to do my due diligence and get at least two opinions. Once I get a second opinion I think I can move forward; decide which specialist to see long term as my rheumatologist and also really start chipping away at the lifestyle stuff.

For me the first step will be to move towards an AIP elimination diet. I have already cut out alcohol (not hard since I never drank much anyway) and coffee as well as diligently adding vegetables to every meal and eating fish 2-3 times per week. Next I will cut out gluten and dairy while adding bone broth and more veggies. I would like to get up to 2-3 servings of veggies per meal. Eventually I would like to do full AIP for a month or two, including weaning off my NSAIDs, followed by reintroduction.

I would also like to get back into restorative yoga once per week to help with keeping my joints mobile and help with mindfulness and stress management.

As part of this journey I would also like try acupuncture, visit a naturopath (and maybe even make a naturopath part of my care team), experiment with essential oils for pain, go on a spa retreat, work to reduce my toxic load with things like all-natural cleaning products, organic cotton sheets and even more all-natural body care and makeup. What things would you add to this list?

If you have an autoimmune disease, what things were most helpful for you to bring symptoms under control?

 

Updates on the Crunchy Journey

Six years ago when I first started paleo I did great! I easily lost 40 pounds (of which I have kept 20 off), had great energy levels, good sleep most nights. Then I moved and started a new full time job and after a few months fell off the wagon – I’ve yet to get back on for a sustained amount of time.

In the meantime I’ve struggled with GI issues, fatigue, anxiety and in the last year numbness in my extremities, muscle fasiculations, back pain, muscle and joint pain, and abdominal pain above and beyond my usual IBS symptoms. This started me down the path of blood tests and imaging studies, visits with neurologists and GI specialists, even a liver biopsy. Somewhat scary lab results (like a high ESR and CRP) and most recently to autoimmune markers that point to a strong likelihood of RA (though I have not yet had an official diagnosis of anything).

As somewhat scary as it is to have a probable autoimmune disease, I’m also happy that after four years of progressively feeling worse we are finally nearing some answers… When I told my mom that they found autoantibodies that pointed towards RA she commented, “I’ve never seen someone so happy to find out that they might have rheumatoid arthritis!” But when you have been feeling bad for years and are convinced something more than just poor sleep or being overweight is the cause of your issue, finally getting some evidence that you were right all along feels like a win!

Sadly, I know my story is the norm when it comes to autoimmune disease, because at first the symptoms are so vague and general that it really could be just poor sleep, life stress and/or lifestyle factors… (even with autoimmunity those things are super important)… Symptoms are also often systemic, and there are not really any autoimmune specialists, rather patients must see specialists for all their varying symptoms. A GI doc for their digestive issues, an endocrinologist for their thyroid, a rheumatologist for their joint pain and of course their GP for general wellness check ups and to get referals for all the specialists. According to the AARDA it takes an average of 5 years (and five doctors) before a patient receives a diagnosis. By that metric I am right on time to be (hopefully) nearing a diagnosis.

Now again, I don’t know for sure that I have RA, there are still other tests to do and the autoantibodies they found in my bloodwork can also be present in other autoimmune conditions and even non-autoimmune conditions (like lung infections and cancer). Once we have pinned down a more firm diagnosis I will definitely follow up. Nevertheless…

I’m thankful that my healthcare providers believed me when I said my troubleshooting wasn’t helping and I still wasn’t feeling well. I’m thankful they were willing to order tests even if the likelihood was low that anything would turn up. I’m thankful we are working to find answers and not just fix symptoms. I’m thankful that I have insurance and even though the bills have been pricey, they have so far been manageable. I’m thankful that I have a job that has allowed me to take the time off of work that I have needed for doctors’ appointments, testing and PT. I’m thankful to have a job I enjoy which makes it much easier to come in and find meaning and pleasure in your work even on days when you aren’t feeling great.