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What is this Ankylosing spondylitis?

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!

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Update: first of the year

So I had my annual physical with my primary care doctor today. I really like working with her because she listens and tries to help based on my lab results, how I’m feeling and what might have been treated by other doctors in the past. Below is my update on issues I’ve mentioned in the past:

  • Iron level: still sketchy. I tested 6 months ago and it was low. Now, it dropped almost another point even though I take iron 3 times each day and liver pills. Since I have heavier cycles, I’ll be getting some testing done with an ob/gym
  • C reactive protein level: still elevated BUT…lower! In the past, I had hs CRP measured but the lab with the doctor just did CRP. And from my understanding, the conversion is based on a factor of roughly 10. So in converting my 39.5 CRP to hs CRP, I would be at a 3.9! This is AMAZING!!!!!!! My last test was done at the end of 2020, around November and it was 19

So, mixed results. My weight was about 8 pounds less than last year but I’m not really concerned about weight. I’m more than okay where I am. I’m just trying to see what is going on with these iron levels!

What are my health intentions this year?

1. Increase iron level

2. Continue to decrease c reactive protein

3. Better mobility in knee and neck areas

To help, I started the autoimmune protocol. It’s basically an elimination diet to help lower inflammation, heal the gut and find out what food triggers I might have by systematically reintroducing foods with a journal of results. I’m starting with 3 months but may go up to 6 months if needed. And I’m trying to find a functional or integrative doctor.

What are your health intentions this year? How are you going to make it happen? All the best in this new year! 🤩

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Iron! – Wellness Wednesdays

One of the markers that I have to monitor is my iron level. Minimum should be 12 but to feel great, the goal is at least 50. And let me tell you, this marker has been a struggle!

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.

About 14 years ago, I had a huge drop in my iron level. Long story short, my menstrual cycle stayed on for almost a year. There were ebbs and flows but just constant. It was so bad that I was freezing while everyone at work was warm. I went to an outpatient urgent care and found out that my iron level was 6!!! The nurses were surprised that I didn’t have more complications with such a low level.

Soooooo I had to get a blood transfusion of two pints and stay in the hospital overnight. Not a fun process but I was able to begin the work on having a higher iron level. But with heavy cycles, it’s a challenge to have a higher iron level. It typically hovers around 12 🤯

I was taking a really good iron supplement once daily and recently switched to desiccated beef liver, which has a higher bioavailability. I actually had lab work taken today that included my iron level so I am hopeful that the desiccated liver has helped. 🤞🏾

Why mention all this? Your hemoglobin level is so critical to many body functions. Did you know that you can have heart palpitations if your iron level is too low? Or that you may develop pica? I’ve not had these symptoms but a friend did. Developing a healthy iron level is still my goal and I’m determined to keep pushing the envelope for better health in this area.

Any suggestions on how to increase the iron level? I’m definitely open to suggestions. See you next week!