Well, 2025 and I didn’t exactly start off on the right foot but that’s OK. There are still severals months left in the year and plenty of time to pivot, so that’s what I’m doing!

This blog post details the persistent low back pain I’ve dealt with since May of 2021. It has been an arduous journey, but after 1,410 days, I have a diagnosis. It only took about dozen other diagnoses to get here!

We know I like to write a lot, especially when I’m trying to process my thoughts, so if you prefer using the Table of Contents to pick and choose what looks good to you, I’m all about it (you just might miss some good stuff!). 🙂

1. May 9, 2021
2. May 10, 2021 through April 4, 2023
3. Six Hundred and Ninety Six Days Later
4. Bye Bye PT, Hello New Lifestyle
5. Back to the Doctors
6. 2024
7. “This Time You Better Go, Kate”
8. A Glimmer of Hope: Mariah
9. Stop Wallowing, Kate
10. Female Spine Doctor Energy
11. The First MRI
12. March 10, 2025 – The Chaos Begins
    1. Making Phone Calls
    2. Is She Trying To Ruin My Life?
    3. Bye Bye Dr. Rickert
13. What Even is Rheumatology?!
14. March 18, 2025: The Day I Got My Diagnosis
15. So, what’s next?
16. The rest of 2025
17. Top photos from 2025 so far
    1. January
    2. February
    3. March
18. And so I pivot

May 9, 2021

I was in a BJ’s self-checkout line ringing up my $300+ of bulk items, as a single person does. 😉 After I pushed all my items down the conveyor belt and paid, I began putting things into my cart. I didn’t think anything of it until I reached for the package of paper towels and found myself face-down on the conveyor belt, tears in my eyes. It all happened so fast but I had the most intense pain I’ve ever felt (and I’ve broken bones before). I could barely walk to my car and I still had to load my car in the parking lot and unload the car at my apartment, but I did all of those things because I was (still am!) a Strong Independent Woman, albeit, in a f**kload of pain.

You know what I didn’t do? I didn’t tell my PCP (aka my doctor) for 23 months.

You know why? Because at the time I collapsed in the BJ’s self-checkout line, I was 218 pounds and we know how healthcare professionals usually treat people who are overweight. They say, “Just lose weight and you’ll be painfree!”. Wow. If only it were that simple!

May 10, 2021 through April 4, 2023

I yo-yoed with my weight (218 up to 240 then down to 225) and had periods of pain on and off for those 23 months. I did everything I could before I finally told my PCP in April 2023. This included:

• Ibuprofen/Advil
• Tylenol
• Stretching
• Heat
• Ice
• New office chair, and then a new office cushion
• Massages of the glutes and lower back
• Standing desk
• Fitness coach that helped me go from 240 to 225
• Going for walks **
• Exercising with weights at the apartment complex **

** It’s important to clarify that I didn’t think walking/working out would help, per say, but I was so desperate to lose weight that I did anything I could. I took notes during those 23 months so I’d have info for the PCP. It’s sad to read my notes:

March 22, 2023: Called mom in tears because I was in the middle of a walk and the pain was bad, but I know steps are important in losing weight and that’s most important to me.

How heartbreaking is that? That I’d rather be in pain just to keep my activity level up to lose weight…

Six Hundred and Ninety Six Days Later

I finally saw my PCP on April 5, 2023 — six hundred and ninety six days (696!) after the initial “injury”. Who knows what kind of further damage I did in those 696 days.

My PCP immediately sent me to physical therapy. I did 5 months of PT and I was a circus freak being paraded around. I was assessed by 3 people in the PT office. Nothing we tried was helping.

Brief interlude for timeline sake —
Now remember how I mentioned the ibuprofen as a treatment? Well… It turns out that I overdid it on the ibuprofen because that’s what caused my lymphocytic colitis (LC), the type of IBD I have. LC is typically seen in women in their 60s (I was in my late 20s at the time) or people who have excessive ibuprofen usage. My symptoms started to show in May and it took 7 weeks to find the answer (end of June 2023). Oops. I can’t take back the past, I can only learn from it. So this is why when people tell me, “Just take some Advil/ibuprofen”, it bothers the sh*t (LOL – see what I did there?) out of me.

Bye Bye PT, Hello New Lifestyle

In September 2023, the primary physical therapist I was seeing and I mutually decided that it wasn’t worth either of our time anymore. I wasn’t getting any better. He was out of ideas. I was pissed that I spent thousands. He was probably pissed he hadn’t cured me.

Just before I ended PT, I joined Total Fitness & Nutrition and started working with Steff doing personal training and nutrition. Steff knew about my back pain and we were constantly modifying exercises for me. Some days my pain was a 1 and some days my pain was a 6.

In September 2023, I started doing monthly massages targeted towards my lower back and glutes. Honestly, this was incredibly painful and not helpful at all. Within 6 months, I stopped doing the massages.

Back to the Doctors

I went back to the doctors in January 2024 to complain about my pain.

Now here’s where I may have f**ked up.

When I saw my PCP, she wrote me referrals for a lumbar spine MRI and for a visit with the Spine Unit — neither of which I took advantage of. I figured the MRI would just be too expensive and after 3 years of pain, the pain would have to go away eventually, right? … RIGHT?!

Spoiler alert: it didn’t.

2024

So much happened in 2024 (see the recap here) and the back pain persisted.

I was constantly modifying at the gym. Modifying for me either meant reducing the amount of weight I was lifting, not using any weight at all, or simply not doing the exercise we were supposed to do and doing something else altogether. Walking and running was painful at times.

I’d have difficulty lying on my back, especially on hard surfaces. Getting in and out of the car was bothersome, too. My normal, regular day-to-day activities could be painful.

I was in a groove though. I was working out consistently, getting leaner, dropping weight.

F**k the back pain, look at my progress!

I pushed through.

… But was this detrimental?

Towards the end of December, I started seeing a pelvic floor specialist. One of the things they help with is low back pain. I figured I had tried everything else I could think of and maybe this would finally bring me some much needed relief.

Audra, owner of Autonomy Pelvic Health, is amazing. If you’re local to the Leominster, MA area, I highly recommend checking her out.

She assessed me: The pain in the left butt area is likely due to limitations in posterior pelvic floor lengthening and opening of the back of the pelvic bones. 

She gave me a few stretching exercises to do on my own.

I cried. I finally felt like someone was listening to me and would be able to help me.

We saw each other a couple more times until…

“This Time You Better Go, Kate”

On January 12, 2025, I went on my last run.

On January 18, 2025, I had my last workout at Total Fitness & Nutrition.

I realized I was not OK when I dropped to the ground doing the workout. The pain was that intense it brought me to my knees. The rest of the workout was a blur.

I never recovered after that.

From January 19 to February 2, I rested my body. I wallowed in self-pity. My muscle mass started to dissipate. My clothes were getting tighter. I was eating to numb the pain.

I saw my PCP on January 24, 2025 — one year to the day that I saw her last time for my back pain (weird, huh?).

She reissued the lumbar spine MRI and Spine Unit referrals.

She looked me dead in the eyes and said:

“This time you better go, Kate”.

A Glimmer of Hope: Mariah

Now, here’s another bit of new news! I found a therapist! I’ve only been saying for years that I’ve needed one and I finally have one who specializes in cognitive behavioral therapy. When I first started with Mariah on January 16, we decided that we’d focus our sessions around getting me to the half marathon in June and whatever that entailed. Well, I’m not sure me or Mariah ever realized what would play out since January 16, but damn, am I glad as hell to have her! We’ve been working through a lot in our sessions. I even have homework, which makes the student in me happy.

Stop Wallowing, Kate

I was able to schedule an appointment with the spine doctor for February 26. OK, that’s fine. 4 more weeks of waiting? I can do that.

I figured the spine doctor would determine whether or not the MRI was necessary at my appointment on February 26, so you can imagine my surprise when the office called me to schedule my MRI for Saturday, March 8 at 4:30 PM (ew, but I’ll take it!).

In the meantime, I stopped wallowing.

I did a free trial at the Y to try out their walking pool and hot tub. It was OK, so I converted to a paid member. (Let me just say that the Y is an interesting place… Haha.) I wasn’t doing my “decompression walks” because of how painful walking was. I certainly wasn’t lifting any weights. I was just trying to move my body in a way that made me feel better (more so mentally than anything else).

Female Spine Doctor Energy

Fast forward to February 26. I had the name of my spine doctor but knew nothing about him. I figured I’d have to explain the last 4 years of pain to a man and he’d mansplain my pain to me. I did not want that to happen, so I came prepared with a printed high-level summary of the last 4 years, including treatments I tried, when I feel pain/pressure, and the number of spasms I’ve had (15, if you wanted to know!).

When Dr. Rickert walked into the room, I sighed with relief. There she was with all her amazing female energy. And the first thing she said to me? “Kate, I want you to know that you’ve done everything right. And this high-level summary? Incredible!”

We reviewed my summary together. She asked more questions; one of which was did you try acupuncture or see a chiropractor? I said no to both. I didn’t want to be poked with needles and I wasn’t sure a chiropractor was the best approach for me. She thanked me for not going to a chiropractor because in many of the cases she’s seen involving a chiropractor, most people do further damage by starting there instead of a spine doctor or an MRI.

From there, she did a physical assessment. She wanted to see what she could determine based on touch and movement so she could compare her physical assessment to the results from the MRI.

My physical assessment showed A LOT. I was negative for this and positive for this. I was tender to this but not to this.

My pain has been primarily left side since May 2021, but I’ve had the occasional bouts of pain on the right. Since January 2025, it has been the left side.

… So you can imagine when she moved my right leg a certain way, we were both equally surprised by the yelp that escaped my lips.

I won’t bore you with the details, but the high-level summary was:

1. Coccydynia (fancy name for tailbone pain)
2. Lumbar spondylosis
3. SI (sacroiliac) joint dysfunction
4. Piriformis syndrome of both sides

But she didn’t want to speculate any further until we had the MRI results in hand and we could review them together.

At this point, she advised against weight lifting (especially the CrossFit-style weight lifting I had been doing since September 2023) and encouraged me to continue swimming and start walking again after work (hooray for my decompression walks!) even if it was painful.

The First MRI

On March 8 at 4:45 PM, I slid into the MRI tube and listened to screamo music while the machine did its thing for 15 minutes.

By 6 PM, I had my preliminary results. Can you say FAST!?

The preliminary results showed:

• Small L4-5 disc protrusion w/o significant mass effect or stenosis.
• Small L5-S1 disk extrusion w/o significant mass effect or stenosis.
• Findings are most consistent with incompletely visualized sacroiliitis: 
  • There is abnormal T2 hyperintense marrow on both sides of the left SI joint.
  • There is abnormal T2 hyperintense marrow on the sacral side of the right SI joint. 
  • The sagittal images that are the furthest right of midline confirm that the right sacral T2 hyperintense bone marrow corresponds to bone marrow edema. 
  • There is irregularity of the articular surfaces on both sides of the right SI joint.

March 10, 2025 – The Chaos Begins

Making Phone Calls

I was originally scheduled to review the MRI results with Dr. Rickert on March 18, but because of a cancellation, I was able to get in on March 10 (yes, the Monday after my Saturday MRI).

I knew this would make the MRI timing a little wonky because my MRI was done through my PCP and the Spine Unit is completely separate. That meant I had to make a couple of phone calls Monday morning, first to the Spine Unit to see if my PCP had sent over my MRI results and images. They hadn’t and they needed me to bring a CD with the images on it. Fine. I called Radiology at my PCP and asked how to go about getting the CD. They told me they only do them in-person and with a drivers license. Fine. I told them I’d be in before my appointment with the spine doc. (Thankfully these two offices are on the same road!)

Is She Trying To Ruin My Life?

About 10 minutes after those two phone calls, I got a call from my PCP herself, Dr. Shung. She wanted to review my MRI results with me over the phone. I was a little confused since she knew I was meeting with the spine doctor later that day, but I said OK.

Then she hits me with:

“I’m ordering bloodwork, the 2 MRIs for the SI joints that the radiologist recommended — one without contrast and one with contrast, and putting in a referral to rheumatology. I think you might have Ankylosing Spondylitis, Kate.”

What in the alphabet soup is that?!

Panic ensues. I’m shaking. I am barely focusing on Dr. Shung’s words because I can’t figure out how to spell Ankylosing Spondylitis so I can figure out what the f**k it means.

Ankylosing Spondylitis (AS) is a chronic inflammatory disease that primarily affects the spine and sacroiliac joints (where the spine meets the pelvis). It causes pain, stiffness, and progressive fusion of the vertebrae, which can lead to a hunched posture and reduced mobility. AS is an autoimmune condition, meaning the immune system mistakenly attacks healthy tissue, leading to inflammation. There is no cure.

Here’s another fun fact about AS. A symptom of AS is IBD. So then the question becomes what caused my IBD? Was it the excessive ibuprofen? Or was it the AS?

I tell her today is her lucky day because I have to come by the office for the MRI images so I’ll get my blood drained out then. She doesn’t laugh, but I chuckle. (I deal with bad news using humor, hehehe.)

I ask her if Dr. Rickert will disagree. She says maybe but she’d rather have the bloodwork and get the new MRI referrals in progress. I don’t disagree, but she’s ruining my life!

I’m texting Momma D. (she was working) and freaking the hell out. For those who don’t know, my mom is a Nurse Practitioner so she speaks medical jargon all the time. I’m sure none of this fazes her — except when it’s her just-turned-31-year-old daughter who might have this alphabet soup bullsh*t life sentence. She’s immediately asking me for the rheumatologist referral so she can make sure it’s the doctor she wants me to see. I don’t have any information about the referral except that it says “Rheumatology Referral”.

Then she says: We will deal with it. I’ll be by your side as much as I can to figure it out. No worries.

(As I know we were both full of worry.)

Bye Bye Dr. Rickert

I see Dr. Rickert for the last time. She immediately says, “I’m transferring my care to your PCP. She is ON IT! I’m super impressed. She read the report and the images before I had a chance to!”.

My heart sinks. “So you agree with her?”, I ask, eyes filling with tears.

“Not necessarily, but I do think there’s something amiss. Let’s look at your MRI images together and I’ll show you what I mean.”

She starts throwing medical jargon at me while we’re looking at the images.

If you’ve ever seen this gif, it’s exactly what I looked like during that appointment:

Then we get to the mother of all MRI images. My first question: “Oh, are those my butt cheeks? They look really good!”

Dr. Rickert, the kindest doctor I think I’ll ever come across, chuckles and says, “I can see why you think that, but that’s actually your back muscles and they do look really good!”

Then she hits me with, “but do you see that white stuff here and here? The 2/3 full on the left side and the 1/3 full on the right side? That’s not good.”

And she tried to tell me what all of the white stuff meant but by now, I can’t even think straight. I take a picture of the MRI image on the screen.

Dr. Rickert looks at me and says, “Because of this image, I agree with transferring your care from Spine Unit to Rheumatology. If it doesn’t work out with them, come back and I can try a couple of things here.”

“Why can’t you try them now?”

“I need you to see the rheumatologist first, Kate.”

Well, f**k. 🙂

What Even is Rheumatology?!

I guess I had to start with that question first.

Rheumatology is a branch of medicine that focuses on diagnosing and treating diseases that affect the joints, muscles, and connective tissues. These conditions, known as rheumatic diseases, often involve inflammation, pain, and autoimmune responses.

Once you drop the words “Ankylosing Spondylitis” (and then spell it), the front office staff at a Rheumatology office tend to move quickly, especially when it’s backed by the fact that your mom works in the same system (I mean, come on, Domenichella is not a common last name) and your referral has been updated to “Priority — within a month. Must be seen by April 10, 2025”. Woof. 🙂

At first, the only available appointment was May 6, but the sweetest woman at the front desk said she’d shoot the rheumatologist a message to explain the situation. I didn’t think anything of it and told Momma D. my appointment was scheduled for May 6. She said she was working that day, but wanted to be conferenced in.

A few hours later, the front desk lady called me back and left me a voicemail (I was in a meeting) that Dr. Goodman wanted to see me sooner than May 6 and was opening his schedule up on Tuesday, March 18 at 11:30 AM for me.

I told Momma D. the (good? bad?) news and she said she’s coming with me because she has the day off work.

I couldn’t schedule my next set of MRIs because insurance was putting their foot down. I don’t know what happened with that because on Saturday, March 15, I got a text from the patient care coordinator that insurance was good-to-go and I could call the office on Monday to schedule the MRIs. I’m not going to ask questions!

Well, I’ll spare you the details but insurance got involved again and after 70 minutes on the phone with them trying to get me to go elsewhere for my MRIs and it getting nowhere, Momma D finally said, “Let’s see what Dr. Goodman says tomorrow. He might not think you need any additional imaging done”.

Say less, Momma D!

March 18, 2025: The Day I Got My Diagnosis

Spoiler alert! Yes, I have a diagnosis. Before I get into that, let’s talk about everything leading up to Dr. Goodman telling me what was wrong with me.

I picked up Momma D an hour before my appointment. We’d rather be early than late and we figured we’d be able to grab a coffee on the way.

The route took us through Devens (a former military post turned civilian hub) and it hit me: I can bring Momma D to Marty’s Corner Cafe! I’ve been once before and it was delicious. I knew they were bound to have coffee and I was right (love it when that happens!).

I think we were both feeling a little uneasy, which showed in our food choices: warmed cinnamon roll with frosting and a medium blueberry iced coffee with oat milk and Splenda for me, and a warmed banana chocolate chip muffin and medium hot with cream for Momma D. Do we have regrets? Nah. Was it delish? Absolutely. Would I get it again? Hell yeah!

We get to the rheumatologist’s office. We had to wait a little bit but that was OK because Dr. Goodman immediately put me at ease. He was polite and present.

He graciously accepted a copy of the high-level summary I had given Dr. Rickert. He listened and took notes. He asked questions.

The office didn’t have a way to view my MRI images, but Mom had the picture I sent her of the infamous MRI image from the appointment with Dr. Rickert ready to show Dr. Goodman.

He took a good look at the picture and then said, “Some people come with back pain and nothing to show for it. You’ve come with back pain and A LOT to show for it. There’s a lot of bone marrow edema in your SI joints, Kate.”

Bone marrow edema (BME) is a condition characterized by an accumulation of fluid in the bone marrow. (AKA "the white stuff"!) 

Then he continued, “and there’s significant erosion here and the beginning of erosion here”, pointing to my right SI joint and then my left SI joint.

SI joint erosion refers to the loss of bone tissue in the sacroiliac joints (where the bottom of your spine connects to your pelvis). 

Bowtie-white-coat-wearing-doctor say what?

None of the other doctors who have looked at my MRI images have said anything about erosion! Turns out the purple is the erosion he’s referring to:

So after all that, Dr. Shung was right.

I do have Ankylosing Spondylitis. Gosh, what the absolute f**k.

The good news: Dr. Goodman believes we can reverse the bone marrow edema!

The bad news: We cannot reverse the erosion of my right SI joint or stop the erosion that has already started in my left SI joint.

The good news: We can treat it using Humira, an immunosuppressive drug used to treat arthritis, plaque psoriasis, Ankylosing Spondylitis, Crohn’s disease, and ulcerative colitis.

The bad news: It’s not curable.

Well, you win some, you lose some, I guess!

Even though I thought this was completely unnecessary, Dr. Goodman still had to do a physical assessment on me. Whatever. I was used to it at this point because Dr. Rickert had done the same thing to me a few weeks back.

It turns out the yelp I let out with Dr. Rickert is most likely from the SI joint erosion on the right side. I have less bone marrow edema on right side, but a far more significant amount of joint erosion than the left side.

I’m a mess, but I’ll pivot. I have no choice.

So, what’s next?

Well, after lots of back and forth with insurance (thankfully I didn’t have to do a lot of that because the Rheumatologist’s office did that on my behalf), including 2 denials and 1 urgent appeal, I have finally been approved to start Amjevita, a biosimilar medication to Humira (insurance denied Humira off the bat with no appeal option). Humira is a biologic that helps to reduce the signs and symptoms of many autoimmune diseases, including Ankylosing Spondylitis.

According to the Amjevita website, it should improve my back pain and stiffness and can help fight the inflammation that causes my symptoms.

This means that every 14 days for the rest of my life, I’ll have to inject the SureClick autoinjector and the prefilled syringe into my thigh or tummy. Huzzah!

I hate everything about needles and having to give myself medication like this, but if it helps, it’ll be worth it.

The rest of 2025

I surely wasn’t expecting 2025 to go this way, but that’s OK.

I did have to leave Total Fitness because my body can’t handle that type of workout — at least not right now. I’m trying to adjust to my new normal: walking, swimming, light lifting with my 10 pound dumbbells, etc. It’s not the activity level I’m used to, but it’s the activity level that I can tolerate.

There’s still so much to look forward to, even if life feels heavy right now.

• In April, my cousin is getting married and my sister and I are her co-maids of honor! ❤
• In May, I’m going to Ali’s (college roommate) wedding dress pickup and my family is heading to Aruba for some fun in the sun!
• In June, two of my cousins, my sister, and I head to Montana for the Missoula Half Marathon. While I’m registered to run, it will most likely be more of a walk. My sister might have to roll me over the finish line, haha. My “reign” as the Shrewsbury Toastmasters President comes to an end in June, too.
• In July, I have Ali’s bachelorette party!
• In August, I have Ali’s bridal shower and her backyard wedding celebration. ❤
• In September, I have Becca’s bridal shower (I’m her MOH for her January 2026 wedding)!
• In November, I have Becca’s bachelorette party!

That’s just what I know now! I know I’ll have so many more fun events.

So while my health might be a little questionable at the moment, I know one thing for sure:

I am loved and supported. ❤

Top photos from 2025 so far

The best way to see the pictures is to view the blog post in your internet browser and tap/click each picture to open it full screen. Once you open the photo full screen, you should be able to use the left/right arrows to go through the gallery. If you don’t open it full screen, you’ll only see a cutoff version of the original picture (and where’s the fun in that?).

These photos are in no particular order. It’s just how they uploaded from my computer. 🙂

January

February

March

And so I pivot

Taking Back Kate isn’t just about my weight loss journey anymore, it’s about making damn sure I still live my best life possible despite my diagnosis.

This is especially important on the painful days and through the thousands of injections I have to give myself (because I’m going to live to be 102, mark my words!). Momma D. and I will do my first injection together on Friday, April 4. My injections will be every other Friday from there on out.

I have so many thoughts I’m processing.

At first, I was angry with Fat Kate for not seeking medical help sooner. If she had just said something in May 2021, maybe Present Kate would have a different outcome.

I understand why she didn’t though. And if you’re someone carrying a little extra weight, you probably know why I tried everything else to find relief before going to my doctor. Today, Present Kate gives Fat Kate grace and understanding. She did what she thought was best at the time. She tried to do it on her own and that’s courageous. If I could, I’d give her the biggest hug and tell her I’m proud of her. ❤

I was also upset with February 2024 Kate — the one who had gone back to the PCP to complain more about the same pain. The one who put cost above health. The same one who thought, “I’ll suffer through this back pain if it means I’ll be hot and skinny again”. If she had gone through with the MRI and Spine Unit referrals a year sooner than she did, would Present Kate have a different outcome? I’d give her a hug too and tell her that I’m not angry with her for prioritizing her physical appearance over internal health.

We will never know if any of the Kates could have intervened sooner.

And honestly, life is too damn short to dwell on the “what ifs”.

Life is going to look a little different for me, and that’s OK.

Let’s pivot together.

❤ Kate