Wednesday, May 29, 2024

Scopes, Rheumatologist, Infusions...

 Lillian finally had her long overdue scopes and it revealed that her Crohn's is in remission.  She did have a few minor issues but overall he was not concerned. Well, mildly concerned, but had no answer to the issue.  She will continue with every 8 week infusions.

She saw a new doctor, a  rheumatologist, and it was a very long appointment.  He had no answers per se, just lots of questions. He did mention some other diseases he wanted to rule out.  He did a very thorough overview of her history.  He ordered some blood tests and about 20 xray films.  It only took them four sticks and 2 additional hours to get all that done. We see him in June again.  I should, by now, be used to going into appointments and coming out a bit overwhelmed.  It's just more.  More to deal with.  More to process, just MORE.  We already have a new a new dr (immunology) added to the list since some of her blood work came back. More.  

We have an upcoming appointment with her urologist.  She'll be delighted that we never got the testing the Nephrologist wanted because it is nearly impossible to collect her first urines of the morning three days in a row and run it to the hospital within the hour. 

Also, there is something weird growing on her big toe and we'll be seeing the regular doctor for that tomorrow.  #winningatmothering (yeah, it's been there a while and we thought it was athlete's foot..but it's not)

She had infusions today which went fine after 3 IV sticks.

She's currently holding a grudge against me because I bought her a dress at goodwill and I bought me a dress at goodwill, she thinks (today) mine is hers.  It's been a great evening. *insert sarcasm*

Prior to all this, I was connected with a woman at the ARC of Jackson County.  It's an advocacy agency for disabled individuals.  Lots of good changes will hopefully be coming our way, but everything is a process and I'm the one doing the leg work to keep things moving.  For the first time in 17+ years, I can finally see that our lives might look a little different. I feel like I have someone in my corner helping me navigate all that is coming.  The agency has connected us to an attorney for the legal guardianship and t we were able to apply to the agency to help cover half the cost.  That, alone, is HUGE.  If that had been the only thing that came of that day, it would have been worth it, but so much more on the horizon.  God willing. Most of all, I hope to have a personal friendship with this woman as our children our similar and walks are too. Meeting someone like us is like catching a life preserver in the ocean.  (to me.  don't get me wrong, we have a lot of very faithful, giving, praying, loving, there for us, friends.)

In other news, one of my daughters is experiencing some very serious complications with her pregnancy.  If you could lift her and our little baby girl to the Lord, we would be so grateful.

Let me tell you, friends...our Lord is faithful.  Transparency...I'm struggling.  I'm just feeling weighed down.  I know the Lord faithfully holds me up.  Life is hard.  This is hard.  God knows, He sees, He hears, He answers.  Keep looking up.  


  1. This one time when I was feeling the weight of “more,” as someone prayed with me I saw my “more” on trays, now sitting on my half lifted hands. Trays overflowing with all the mores in my life. Then I lifted them into Jesus’ hands. There they looked like teeny tiny shopkins toys. He is worthy of our “more.”

  2. What a blessing that you found someone walking the same path as you (or close to it.) I hope Lillian comes to terms with your new dress. :) I'll pray for your daughter and her unborn baby.