I went to the rheumatologist a few days ago.

I was so nervous you’d think I had been going for the most important interview of my entire life.

In some ways I was. For months now… months being no exaggeration I have put my faith and hopes into this woman I had never met before. That she would be able to give me answers.

When I didn’t hear from the office at first I actually was nervous to call… like maybe I had been rejected.  I had to psyche myself up to make the calls to the office. I had a really bad flare and tried again…. and this time I got an appointment.  I was told August but when I explained that I had referrals sent already she found my an appointment in June.  I cannot express the amount of gratitude I felt.

Wednesday came and it was finally appointment day.  I was so thankful for a busy morning because I didn’t have time to have a meltdown.

I had rehearsed my symptoms over and over again.  This is a very emotional subject for me as my quality of life is severely impacted.  Rheumatologists as my primary care put it are like unicorns…. they can be hard to find…. and this was a good one.  While I did not think she would take me less seriously if I became emotional I did understand that the more precise and factual I could be the more effective I would be in getting a diagnosis.  Over and over I rehearsed.

Some pain is consistent- lower back . Disc issues. Bring copy of MRI. MRI was done due to pain in feet upon waking.
Hip/ pubic bone- explain injury
Concerning pain is the pain they comes in flares. Mirrors on both sides. Hands, wrists, shoulders is how flare starts. Will also flare in back,hips, ankle, feet. Effects strength.  New a flare was coming once because I had to switch hands pumping gas.
Occasionally butterfly trash on face. Appeared before last flare.

Try to know family history as well as possible.  Explain its incomplete without getting into details why.

Don’t forget to mention IBS. Or the fact you gained 40 lbs after having baby within months.

The doctor was kind. She was one of the most detailed people I’ve ever met. She had a paper lab sip and as we were talking she would circle more and more tests. She mentioned things like  Lupus ,RA and Psoriatic Arthritis . I mentioned the pain was better during pregnancy with means Lupus is less likely.  I was shocked how many autoimmune was diseases there are…. and even more shocked by how many are so similar but small details change the diagnosis.

We discussed medicine , however she wanted to wait to put me on anything because it could effect my testing. I was fine with that.  I have been in pain for a long time. Waiting a little longer for a proper diagnosis made the most sense.  One medicine is like chemo….one …one of the safest and possibly compatible with breastfeeding ( need to chat with pediatrician soon) requires an eye exam first.  Pain management.

As someone who hates to even take tylenol this is scary. I refused the strong but would have made the quality of my life medicine after my last surgery. My past surgeries were managed with tylenol and motrin as well. Four of my five babies were delivered with no pain medication. I have tried to manage my IBS with lifestyle.

I am afraid of medicine.  I am afraid of taking medicine that will harm a pregnancy or nursing baby… and I’ve had one for 9 years now with the exception of a couple month period during the summer of 2021.

I am terrified of pain management.  I’m 36 years old and want to live a long life. Will starting medicine so soon change that? What if I become addicted? I’ve seen friends become addicts and some lose their life all after trying to manage pain with their doctors.

I walked out of the office with a lab slip for so many tests…and an order for x-rays of my SI joints and my hands. The plan was to do these tests asap…like next day…and come back on a few weeks. Back to the office in the city since there is more availability.  I also walked out feeling both relief and overwhelm. Relief that I was being taken seriously and my pain wasn’t being blamed on my weight… but overwhelm about what might be ahead of me. Whether my labs come back fine or not something serious is going on…and normal labs may be harder to swallow because then there are no answers.

I got my labs done the next day. 6 vials of blood later I began the ritual of obsessively checking my patient portal. So far I know that my body is inflamed and I don’t have hepatitis ( this information is important due to future medicine choices not that is was suspected)

Yesterday I got my x-rays. My hands looked normal which I was thankful for. My hands hurt but normal means no damage.  My hips on the other hand were not looking as good. I realized that almost a year ago I had an x-ray on my pelvis and hip after my baby was born that could maybe be used as a comparison.

I have a few weeks until I go back and know what any of this means. I can see my results but many of my labs are nonspecific themselves . They are part of a puzzle I don’t know how to put together.  I am just hoping they give my doctor enough information to start piecing this together.  I need some relief.