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!
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.
Where do I even begin on this blog post? I was talking to my mom the other day and was talking about my current heath challenges (I’ll update in a separate post but have to see another specialist as I was rear ended in a car accident last week). So much of the “health advice” given when I was young has been proven to be so, so wrong now. And I believe it has a long term effect on my health and the health of others.
One of my first memories of wayyyyy too much sugar and carbs involved eating cereal. Doesn’t sound too bad, right? Well it is when it’s a sugar laden cereal (think the orange animal who claims the food is great or something similar) and I put additional sugar on top of it! And then moistened the cereal with canned sweet milk. OMG!!! There was also the syrup with the side of pancakes. Or my love of pop tarts. I even did Nutrisystem at a young age and had to drink skim milk. 🤦🏽♀️
Remember this was the 90s when fats were vilified so I stayed away from “fat” products. But the substitutes were laden with sugar, sugar and more sugar- Snackwell cookies and candies. My go to meal substitute was a bag of skittles while on the run, again no fat.
And the low point was in college. There was a sweet shop in the cafeterias on campus and a “light” ice cream machine and the waffle machine. Carbs and sugars everywhere. When you have PCOS like me, this is the recipe to have crazy and uncontrollable cravings. Like I wanted sugar all. of. the. time! One thing I’ve never admitted and I’m so embarrassed and ashamed even now because I can’t imagine that I did this- my roommates would have pop tarts which were my biggest weakness. I would sneak and have one at times without asking. 😭😭😭 I would eat and within two hours be hungry again because I lived on carbs.
So why mention all of this now? Sometimes you have to remember how far you’ve come, especially in light of various health challenges. I am pretty sure that my overindulgence of carbs and sugar left me so nutrient deficient that my body was like – chick what are you doing?! I am so thankful that I learned how to appreciate real, whole food. And I know that this health journey will take time. Clearly, none of this happened overnight.
Maybe that’s where you are today, thinking will anything ever improve? How long will this take? Let me encourage you that you can be healthier and support a healthy lifestyle. Each day is the opportunity to make great food and lifestyle choices that move you to optimal health. That’s the goal. So if this former carb and sugar-holic can move past the above mentioned habits and food choices, everyone can!
As I’ve mentioned, I really started focusing on new ways to get healthier in August 2018. But before that, I had tried so many times to lose weight and would get to a certain weight and get stuck! In the in-between times, I would just think – screw this – and eat or do whatever I wanted, even if it wasn’t healthy.
What I have learned in this health journey is that having others who are moving in the same direction as me is key. That being said – a memory popped up on FB today from 7 years ago with a good friend. In the “then” picture, she had lost 15 pounds and I had not even tried again.
And then there’s our now pictures. We took very different paths to achieve better health but look how far we’ve come! My friend is a workout queen, working her way down to a size 6. I am more the lighter workout (think yoga, walking, bike riding) person and am at a size 8. And we both changed our eating habits, though I am much more strict since I’m following the AIP.
And I have other friends who are working on their health too! Be that person who motivates others to make a change to become healthier 🤗. I recently read a quote that where you will be in 5 years will depend on the people you hang around. Get some friends traveling in the same direction as you. It makes a difference!!
I just wanted to share my news with everyone. Living with an autoimmune-related condition can be hard and exhausting at times, especially as I try to juggle in between flare ups.
I decided to take my experiences and move more into the health and wellness arena by starting this blog, working with a preventative health company to share some of the blogs and working for a research scientist who focuses on wellness. So I took another step and decided to apply to a masters degree in public health program that focuses on nutrition.
And … I’m excited to announce that I received my admission letter today to UNC Chapel Hill!! I’m amazed and so so thankful to have the opportunity to make a difference in the lives of others. And of course, I will update this blog with information that I learn. I can only hope that it is helpful to all!
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.
I have been on AIP (the autoimmune protocol) since January 1 and while there have been challenges, it has not been as dramatic of a change as I thought it might be. I had a win Friday! 🙌🏽
I manage osteoarthritis and get steroid shots in both knees a couple of times per year. In not planning as well as I needed to on Tuesday, I had to grab a protein bar to eat something while prepping for a lunch time meeting. Keep in mind, I had that same protein bar before AIP and thought that it did not affect me. But, later that night, I felt a twinge of pain in both knees and my ankles were much stiffer. I knew it was the bar! 🤦🏽♀️
So I readjusted and made a puréed vegetable soup to really focus on nutrients. And when I got up Friday morning, no more ankle stiffness or pain twinges. That was a great learning experience and it shows how far I have come. Before, when eating foods that arthritis doesn’t like, I’d be in a ton of pain in less than 2 hours! Like barely walking with the cane type of pain.
And then today … I did part of a yoga workout on the ball and could bend and lift knees, though not as high as instructor! 🧘🏽♀️I have not been able to get the right leg to bend and lift for months doing the exercise!How amazing is that! That’s combined with doing a short 1000 step walk beforehand without my knee sleeve!!! 🙌🏽🙌🏽🙌🏽
This is such an unheard of breakthrough for me. I’ve read so many testimonials from people who have had such amazing health wins once they started AIP but those are generally from people who have autoimmune diseases. And technically, I don’t. Osteoarthritis is not and while PCOS is akin to autoimmune disease with a published paper making the argument that it should be, it’s not either. But I thought hey, what could it hurt to try and focusing on nutrient density is always important.
I will continue to document this journey, including reintroductions to find out what works for me and what doesn’t. If you don’t know a lot about AIP, I would definitely recommend finding out more, even just to dive deeper into better health. And if you know someone who has an autoimmune condition and think they could benefit, share this post with them!
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.
If you caught my first update of the year, then you’ll remember that I wanted to try the AIP, autoimmune protocol. So what is it? It’s a complementary elimination diet to remove foods that could be a trigger and help heal your gut. There’s also a lifestyle component that focuses on sleep, reduction of stress and movement among other things. Now I will be honest, I tried a semi-elimination diet about 2 years ago but didn’t go all in.
And going all in for me is EVERYTHING!
I find that if I try to slowly transition, I’ll cheat because I keep putting off the next item to eliminate. This time, I did go about 95% elimination as there were food items that wouldn’t last too long. But I didn’t replace those. So now I’m going on all in. And here are my thoughts:
Meal prepping is crucial. Since I’ve eliminated so many things, I have to cook alllllll the time. I live in a college town and there are just lots of chain restaurants and fast food places. I do have a couple of go to places just in case but I’m trying to limit my use of those.
Sleep is your friend! I have to go into the office one day per week and need to get up earlier to be on time. But my go to bed time is about the same = less overall sleep. And I can definitely tell a difference.
Movement as exercise. This is a carryover from working with my nutritionist (who I’m starting to work with again!) but finding movement that works with you and doesn’t burn you out is important. I overdid my movement today while watching Encanto and dancing merengue in my living room! But I recognize that and will focus on restorative movements tomorrow.
Trying different recipes has been very helpful. I also track my nutrients in an app to see where I’m landing since the goal of AIP is to focus on nutrient density. In my case, dialing back my fats would be helpful.
And I can’t say enough about drawing inspiration from those who have completed the AIP and seen such tremendous progress. My goal is to try this for 3 months before methodically introducing food in stages. In full transparency, the first 10 days were not fun. It was like a detox for me but I know that doesn’t happen for most. If I have detox symptoms again next month, I’ll try introductions earlier. It’s recommended to do AIP for at least 4 weeks before reintroductions.
I’ll keep you posted on how this goes! Have you tried an elimination diet? If so, how did it go for you? Let’s share our experiences!
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! 🤩
Everyday, I have a decision to make: to either do all the things to give me a chance to feel great that day or revert back to old habits that weren’t the best for me. Every. Single. Day. I say this because every day is NOT a great day but I choose to move forward with something that can help tomorrow.
Why? Even when it’s hard. Why? Even when I seem stuck. Why? Even when there’s no progress. Because I cling to my reasoning behind what I’m doing. See, when I started my journey in getting healthier, my nutritionist asked – what’s your why? I took that to mean- what’s the reason that is so strong that even when I don’t feel like it, I’ll keep at it. My why?
Elimination of pain
So as I’ve mentioned, PCOS can cause low grade chronic inflammation which I definitely deal with. Well when everything is inflammatory, then it can have negative effects on the body including the wearing and tearing of joints; this can lead to osteoarthritis. And arthritis is painful. Pain is that motivator for me.
I plan to start the autoimmune protocol diet in January to start targeting what may be causing pain and to heal the gut, which I need in the worst way. When you wake up in some level of pain everyday, then you will look for ways to reduce pain – physical therapy, gentle exercise, NSAIDs, more sleep, Epsom salt baths, CBD oil, dietary changes, weighted blanket. I’m trying them all in an effort to minimize pain and enjoy each day.
So what is your why? Whether you are just starting or looking for ways to stay motivated, I encourage you to find a strong reason to stay on track. Writing it down and sharing your reason with accountability partners are both great recommendations that I’ve used. On my vision board, I even include ways to accomplish my goal.
What is YOUR why? Share below and motivate someone today!