Life Changing, but Not So Bad

Last updated: August 2022

I am 41 years old and I was just diagnosed a year ago. My rheumatologist says I am at stage 3 right now.

I always knew that there was something going on in my body, but could never get an answer.

In my 20’s I was real vigilant with trying to find out what it was. I’ve had other rheumatologists tell me they could see that my knees were inflamed, you could see the swelling and redness, but of course the reports would all be normal. I was even told that it was all in my head by another doctor.

So in my 30’s I gave up the search. I was now married and a mother and had a real grown up job. I didn’t have time for it. I ignored the pain and just pushed through. That is never the answer, bad just went to worst.

So of course, I ended up in the hospital for kidney stones. I was such a pro at kidney stones that I never would go to the hospital unless it was extreme, and this time it was. The ER doctor asked me, “does your hip hurt?” Impatiently, I answered, “It always hurts, but did you see the stones?” The doctor said yes, but I had something more serious going on and get to a rheumatologist immediately.

Finally, I got an answer to something that I had given up on. Everything started to make sense. The rib pain that I thought was my bra, the hip pain that I thought was sciatica (WebMD is best, right?).

I was and am still on the search for treatment that works. I am on my second biologic that seems to be working. Things started falling into place, I work from home so I am able to work that is a blessing and I am grateful for that.

I have really had to change my mindset, which is for the better. I allow myself the grace to cancel plans or take a day (or two) to just sit and binge watch Netflix because I have no energy or in a flare up. I have a supportive family that even though they may not fully understand what I am going through, they see me and know when to offer help.

The journey to my diagnosis has been a long one, but I am glad I finally got one. Now I am on the daily journey of maintaining the most comfortable life in spite of fused, brittle bones.

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