Tag: Ankylosing spondylitis

Posted in Overall health

Relief!

Posted on by nlchronicles

Allow me to remind everyone that I am not giving medical advice, but just sharing my journey that has allowed me to move toward better health.

That being said, I started using Humira to stop/slow the progression of Ankylosing spondylitis. The rheumatologist recommended it and am I glad that she did! I can move better and more and I no longer need to get up an hour plus earlier than a normal person would to start my day. While I still get tired (working full time, part time and going to school part time will do that!), the all day fatigue has lessened. The knee swelling that made my right knee look double its normal size has gone down. And so many more benefits!

I got news of the biggest change yesterday!

I’ve mentioned working on my bloodwork numbers before, especially iron and c-reactive protein because iron would be low and CRP (an indicator of inflammation) would always be super super high. I had been trying everything – lifestyle changes, totally changed how I eat, exercise, supplements. I had to do bloodwork yesterday morning to set a baseline on the medication. 

EVERY SINGLE FACTOR CAME BACK NORMAL!!

Even my iron level went up to normal and the C-reactive protein dropped to a normal level; the CRP level had been crazy high when I first had it tested in 2018. If my calculations are correct, my original CRP level was about 100!!!!! That’s at the border of the high level and points to an autoimmune condition. Now it’s less than 3! I am so thankful and so grateful for finally getting relief.

I realize that everyone does not go the medication route but after trying alternative solutions for 4 years, I am elated to find something that has been most helpful!

Posted in Overall health

Finding balance

Posted on by nlchronicles

I’m sitting on the beach at a lake in Ohio. As my brother jokes, this has become my new favorite place. 🏖 and in a way, it is. I can get outside, enjoy the sun and disconnect for a bit before going back into the business of everyday life.

And I’m thankful that the beach is only 30 minutes away!

I decided to bring a book today along with my usual snacks. It’s called Body on Fire by Drs. Aggarwal and Rao and I’m already hooked on the first few pages. It goes along perfectly with my desire to find balance, or homeostasis as mentioned in the book. And for me, that’s everything at this point. So many times, I’m going from one thing to the next all day and not resting until it’s time to sleep!

And I’m on a such a mission to regain balance that I recently put in my notice at work without having another job lined up immediately. There’s a travel component that is just too much for me physically as I learn how to manage Ankylosing spondylitis. But the wild thing is that once I made that decision and put in the notice, I started receiving TONS of interview requests; and while that’s a post for a different time, it brings a level of validation that others positively view your skills the way you see your skills but your current place does not.

But, I digress …I am finally saying yes to myself and all that entails. And my yes may look very different from your yes, and that’s okay. Each of us is so unique and it’s time we celebrate our uniqueness in healthy and balanced ways. So as I continue to read, and begin class again next month, I hope to hold this moment to look back on when I don’t always have a moment to pause.

Wishing you all the best from the beach! And check out the book 📖

Posted in Updates

Birthday update!

Posted on by nlchronicles

Yesterday was my 46th birthday! 🥳🥳🥳🎉🎉🎉

And I’m so grateful for another year. I started an active rehab program with a wellness center to have better mobility and build strength, both of which I need. Since being there, I’ve been able to go forward down the steps rather than turning sideways, bend the right knee more regularly (yay!!), do water exercises weekly and incorporate more yoga on the floor rather than in a chair.

I also started taking medication for Ankylosing spondylitis and that helps tremendously for pain and fatigue. I’ve got a way to go (because brain fog is real! 🤯) but I’m so glad that I’ve made progress. I’ve even started walking more regularly, which had been a challenge because joints would be painful with swelling.

And I’m continuing to work on diet and lifestyle. My sleep is still spotty at best, but I’ve started reintroductions for the AIP and I’m now on stage 2. I did add black and pinto beans early because I needed the calories and feeling of fullness from fiber!

And I’m including a recent photo comparison. The pic on the left is from my cousin’s wedding, just over 5 years ago. The one on the right is earlier this week at the beach with family.

Hope your health journey is going well!

Posted in Life with doctors

What is this Ankylosing spondylitis?

Posted on by nlchronicles

In my last post, I talked about finally being diagnosed with Ankylosing spondylitis. And it’s still a huge thing to wrap my head around, especially since I’ve made such dramatic changes in my health. I’ll admit- sometimes I just want to say forget this push to be healthy and order a pizza (especially from my faves in Chicago) or drench everything in bbq sauce!!! But reality sets in and I know the consequences later will not be worth it so I don’t.

And this autoimmune condition of Ankylosing spondylitis, or AS, has no cure according to the resources that I’ve read. Any condition that ends in “itis” is indicative of inflammation and this is an inflammatory condition of the spine. It can also affect other joint areas. There are secondary issues that can occur with AS such as uveitis, inflammation in your eye which I’ve written about too as I’ve had that multiple times starting in 2009. And the cause of AS? No one knows though it’s believed to start with a leaky or impaired gut.

AS makes you really stiff, especially if you sit for a long time. Movement helps AS a great deal but it’s hard because when you’re in pain, the last thing that you want to do is move around! Stretching and functional movement are helpful and research shows that water based exercises are great as these don’t impact the joints. So I got a referral for that! If left untreated, AS can also cause fusion in various areas with your bones and you lose alllll flexibility and range of motion! 🤯🤯

While no doctor has stated this, I think AS is why I developed severe osteoarthritis at such a young age. The doctors just ask why I developed it so early; 🤷🏽‍♀️ how would I know?? I’m not a doctor. But to be better informed, I ordered a couple of books that are written by doctors who also have AS. Unlike me, both of these doctors have a genetic marker that is often seen with AS. And both found out much earlier than I did in the progression of the condition.

The doctors’ books offer insight on how they manage AS naturally, now. Both had taken different medications and decided that they would move forward without the meds. That’s the level that I eventually want to get to. I’ve been approved to take a VERY expensive medication to help relieve the chronic inflammation that I have. I’m hoping that as I start implementing the doctors’ recommendations, I can work with my doctor to decrease the medication. I’m also going to continue to focus on healing my digestive system and will move in the direction of working with a functional doctor who specializes in these types of conditions. And since stress can play havoc on the gut too, I took up my health care system’s offer to speak to a counselor. My hope is to find ways to better manage stress. Whew! That’s a lot!!

But I’m hopeful! If you are interested in the books by the doctors mentioned, leave a comment and I’ll include them below!

Posted in Life with doctors

Finally diagnosed …

Posted on by nlchronicles

I was in a car accident two weeks ago. A guy rear ended me and it wasn’t super severe. But since I already have neck issues and stiffness, I thought it best to get checked out. So the police officer had the paramedics take me to the ER. While there, the physician assistant sent me for X-rays and a CT scan to check for fractures; I had no physical bruises though I was sore on my back.

Fast forward to my results – the attending physician noted no fractures and stated that my images were consistent with someone who has Ankylosing spondylitis. Now, I’ve researched this condition on and off for a few years but this was the FIRST time a medical professional has ever said – yeah, you have this. The recommendation was to follow up with my primary care doctor which I did.

What is Ankylosing spondylitis? Easiest explanation is that it’s inflammation of the spine that can affect other joint areas as well. Since talking to my doctor last week, I’ve been poring over the research and I’m so angry that no one thought this might be a problem before. I’ve had two rounds of physical therapy for my knee and two rounds for my neck area. I’ve taken LOTS of aleve. I exercise and totally changed my eating habits and lifestyle yet I couldn’t have just ONE doctor to say – hey I’ve put two and two together and that equals this autoimmune condition????

So today, I just want to stress that you have to advocate for yourself. I was sent to see a rheumatologist who really listened. I’ve seen one before; he did a visual test and sent me for some bloodwork. Since I didn’t have the genetic marker and don’t fit the profile (I’m not a middle age white male), then he dismissed it. UGH! I’m so glad that the new rheumatologist listened, put two and two together and is working with me for a plan of action.

I’m fortunate – I work for a research doctor who is familiar with the condition. My cousin and a friend work in the pharmaceutical industry and provided more details on the medicine that is recommended. But so many others don’t have those resources at their fingertips. *sigh* and this is another reason for me to push with public health. Studies show that women of color don’t get the treatment that they need for so many conditions and just as often, they don’t even know what to ask for.

Whatever your medical state or condition, please advocate for yourself. Take the time to do the research. Keep pushing the envelope. It shouldn’t take a car accident or other incident for you to get the treatment that you need.