#thischroniclife Update Nov 2017

Well . . . several have asked, and I promised to keep everyone updated, so here's a quick update on the health journey. Thanks to everyone for the prayers and words of encouragement. They really do make a difference!

 

 

RECAP   Back in Feb, I relapsed with the RA and had a new additional diagnosis of Sjogrens. Some insurance issues caused a brief suspension of all medical care in June and early July, but in August we were able to win those battles and get things back on board. This was a very, very stressful stop in the road and one I will teach on soon.

September brought a big praise - we discontinued the metho/chemo! This required some begging on my part, but we were able to stop the metho injections. I was more than ready for some good news, and this was definitely some wonderful news. In retrospect, stopping full-time work was absolutely a key part of trying to get better. Though I fought it to the end, it turns out my doctors were right all along about stepping away from full-time work. They'd only been asking for 6 years, right ??!? Not working has been a good thing physically, but emotionally, it's been a very tough chapter. I'm going to be transparent here...I miss my team so very much. Truly. I love these precious people, and I grieve for the could-have-been. The outcome justifies the step, so I'm in total surrender now on this change. I trust my doctors completely, I'm so fortunate to have the team I have. I'm not gonna lie though. Emotionally, stepping away from full-time work has been one of the most difficult things the Lord has ever required of me. I see more clearly now what others mean when they say no longer working is a hard step. I get it.

REFIT® instructor, Baby!
ACE-certified, Baby!

In October, we got a little more good news ... the annual DEXA scan showed an ever-so-slight, teeny-tiny improvement in the osteoporosis over last year! The Reclast infusion, vitD supplements and gentle resistance exercise all worked and got us a little better result. I've been working soooo hard (can you say two - 2 !! - fitness certifications - ?!? ) Will repeat the Reclast infusion this year and continue exercising as often as I possibly can.

Just as the anesthesiologist comes in.... headed back for stretching the esophagus. Nothing says "sexy" like "let's go get our esophagus stretched."

Over the past month - really the last 6 months, there have been lots of new GI issues. I'm learning what Sjogrens means for your gut and GI processes. Oh my friends... no words can tell. This is not a fun journey and is often quite painful. Extremely painful. I have a whole new respect for my Crohn's friends out there. The diagnosis of Sjogrens answers a whole lot of questions, so has definitely been a missing link. The last two weeks have dealt me a barium swallow test with inability to pass the dye, an esophageal stretch surgery 5 days later, and an ER visit 6 days after that. It has not been fun.

Crohnies... I salute you. And call you "Sir" and "Madam."  r.e.s.p.e.c.t.

 

Days later, an ER visit. Yes, that's an IV in each arm. 18-guage. ouch.
This, friends, is the underbelly of chronic illness. It's yucky. It's painful. And beyond exhausting. No sugar-coating here.

As a side note, I learned that there is actually something called an abdominal pacemaker - never knew that! Hope I don't have to have one (I already have a pacemaker, thank you....) but the doc did mention it in passing. I'll research that a little bit.

Next  is to follow up on the latest GI/chest CT scans, and get the Reclast scheduled. Had preliminary bloodwork for that yesterday. "I feel like a pin cushion!" sometimes is actually an accurate description. Fo'real, tho.

 


 

Faith, family and friends continues to be my focus. Though my weeks are interrupted with unplanned trips to the doc and ER, and battles of fatigue, needle sticks and blood pressure drops, I'm thankful for this ole' chronic life, especially time spent with loved ones and making memories. Yes, chronic is yucky. It's exhausting. It can be lonely and discouraging. But there's just a sweet aroma to a life lived in the deep end, brought to surrender, abandon and trust in a holy God who has everything under control and uses our weakness to display His strength. And it's a mighty strength. So, so mighty. I'm learning so much. And I pray I steward well this season so that God is glorified and others are encouraged. One day I hope to hear, "Well done, good and faithful servant." Until then, we rock on.

Keep those prayers coming. I'm thankful for every single one, and I love each of you...chronically.

Rock on, y'all... rock on 

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