Deep Waters

I woke up this morning on day two of my Cosentyx hangover and to my surprise, I could hardly walk.  I forgot I had an appointment at the Rheumatologist's first thing so I hobbled off to that and it felt like the perfect thing to do on a day such as this.  Usually when I go, I'm feeling alright and it feels like a waste being there but not today!  Nope.  I had all sorts of complaints to keep him busy for 2 solid hours with yours truly!

Right off the bat, he noticed my hands were swollen.  Each joint on my fingers are red hot and big.  He ended up doing ultra sound on most of my joints and they are all in active inflammation and swollen, even my Achilles tendons.  If I have the choice to cry or be sarcastic, I will typically resort to sarcasm but there is a language barrier with my doc so what I think is freaking hilarious, he looks at me puzzled.  So, it was sort of a waste of good jokes but the nurse was trying to keep it together.

I mentioned my shoulder problem the other day and how I opted out of the cortisone shot.  Today, my Rheumy doc looked at it through ultrasound and it's a mess.  The ends of all the tendons are calcified.  The joint has eroded so the bones are grinding together and smashing all those tendons and ligaments as I move my arm which is causing the impingement.  And, I have bursitis.  So, under guided ultrasound, he slipped a needle into the narrow space of my joint and filled it up with something, hoping to create some temporary space.  I laid there for about 15 minutes for it to settle in and then he tested my mobility.  It was only marginally better but still so painful.  He then did a second injection of Cortisone with strict instructions to rest my arm for a week.  He's afraid I'm going to have no choice but to do surgery to clean out all the calcification from the tendons and ligaments, clean out the rotator cuff in hopes of saving what is left of that joint.

It doesn't appear that the Cosentyx is doing the job.  I wanted to call it quits and just try to remedy this disease in alternative ways but what I saw and felt today, scared me.  For now, I'll finish the 5 week loading dose but I may have to start weekly infusions at an infusion center which is going to suck!!!

When I finally got out of there, I had five missed calls from Salt Lake.  They need to get Shelbie in for another high contrast CT Scan of her lungs!  Before Tuesday.  I am so over this! How many times do they need to keep looking at her lungs!  I think they are in denial that she has a lung problem...plain and simple.  Let's just start treatment and move ahead!  This is a terrible way to live, hanging from one test to the next. Next week already has me exhausted.  So, now, we will be down there Monday, Tuesday, Thursday and Friday!  Back and Forth...

It's been an overwhelming two weeks.  I know I have to make some serious changes to my life but I don't even know where to start.  I don't know how I can keep up with one job, let alone all 5 when I am spending the majority of my days in doctor's offices and hospitals.  It is ridiculously foolish to think I can keep up with this pace but at the same time, doing anything less than what I do, makes me feel like a slacker, and a whiner.   I'm losing this battle.  I'm going to be incapacitated in more ways than one if I don't muster up some courage to face some hard decisions.

The most devastating thing I have had to endure, besides divorce, was being laid off in 2009.  It was a horrible feeling to have a living wage disappear in 10 minutes.  It has taken me years to recover from that and I swore to myself I would never leave myself vulnerable again with just one stream of income.   I am really busy with my design clients right now, but I don't dare rely on that income alone because it is so dependent on the economy and I have no hope in that right now.

I feel like I'm drowning tonight.  I had to go through some big changes with church on Sunday.  Our ward was split and I am in a different ward now.  I know the new people I congregate with will be awesome great people but it feels like a terrible time to lose that safety net of people who know and understand our situation.  It's overwhelming at best and to go through it all again with new people is kind of devastating.  I already feel like my life is way too big, even for me to handle.  It's just plain embarrassing to discuss it with strangers. 

Last night, my new Bishop and his counselors came over and I really think they are great and I was really trying to not freak them out and Shelbie was there so I always try to sugar coat things so she doesn't feel alarmed hearing the story of us, spoken out loud because trust me, when I run down our reality, it brings me to tears.  They asked about possible callings for me and I was all excited on the outside but inside I was dying, and when they left, I cried because I can't do anything they suggested.  I am at the end of the proverbial rope and I hate it!  That's another reason, I need to change the course of my life.

That's a lot of rambling tonight.  I have my work cut out for me.


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