One step forward, two steps back.

This dance is making me exhausted.

---

In my January 24th blog post I wrote: " I am frustrated with how very little I can do physically right now. I tire easily, get dizzy/almost pass out when I get up from sitting, and can barely climb 7 stairs in our split level house. Taking a shower and getting dressed requires a huge effort and wears me out. I am not able to work and do not feel comfortable driving. Basically, my quality of life is drastically impacted."

These things still remain true on April 12th but now I am now not feeling well on top of all of that. I am exhausted, in pain, and I have a headache most days. And, then I feel even worse on Thursday and Friday from the side effects of my methotrexate injection (on Wednesday nights). What is causing all of these symptoms? Who knows! - there are so many variables. Tapering steroids, drug side effects, the roaring uncontrollable inflammation in my aorta, etc., etc.

Last week I was alternating 16mg and 12mg of steroids every other day. My blood work on Friday showed that both of my inflammatory markers (SED and CRP) had gone up. So, I am back on 16mg of steroids every day.

I also had a PET scan last week. It showed inflammation around my aorta - which is what we expected. It didn't show any other inflammation anywhere else. This is good information, because now we know exactly what we are dealing with and need to treat. Insurance approval for the PET scan was a nightmare and ultimately it was neither "approved" or "denied". We are waiting to see if our insurance winds up paying it or not. If not, the self-pay price will be $6,408.

Because my inflammatory markers are high and the PET scan showed inflammation of my aorta, my rheumatologist is looking into changing my biologic drug again. (When this all started, I was on Actemra, then we switched to Kevzara, then we switched to Humira biweekly, then Humira weekly, and then we added methotrexate in addition to the biologic drug). We need something to control the inflammation so that we can taper my steroids.

The ultimate goal of being at 5mg of steroids so that I can have aortic valve replacement surgery seems so, so far away. Each time we make some headway/one step forward, we then have to backtrack/two steps back. This delicate dance of back and forth is exhausting and frustrating. I keep using the word frustrating (or synonyms like: angry, disappointed, annoyed, irritated, exasperated, discontent) but it doesn't really capture what I am feeling. I am not sure how to accurately describe how I am feeling at this point. I feel so many different things throughout the day, it can change minute by minute. My patience for the process is long gone.

I appreciate all the good thoughts and prayers you can send my way. I also am very appreciative of the cards, texts, visits, gifts, meals, and rides. I cannot express enough how thankful we are for all the love you have shown to myself and my family.

Signup Genius - are you able to help with rides to/from medical appointments?

Mealtrain - could you provide a meal on a Wednesday?

Amazon Wishlist