So much work..! And thoughts about SALLY & the past two years.

Amigurumi.

It would seem that these are my “thing” as of late the last few years. I still can’t make them as itty bitty teeny tiny as they’ve been originally designed, but that’s wholly because of SALLY and the damage she’s caused to my hand mobility — I’m ever so thankful (and incredibly grateful) that I still have the ability to type on a keyboard. That summer when TheHubbs  & I still didn’t know what was wrong with me, I couldn’t even type because I had digital ulcers that I didn’t even know were digital ulcers at the time. I distinctly remember that doing anything that required even the lightest of fingertip touch was so incredibly painful.

After finishing up the Ewok Tree Mobile, I’ve been itching to start another mobile. Not an Ewok Tree, mind you, but something equally, if not more, geeky — Star Trek: The Next Generation, Doctor Who, or a collection of VW Bugs & Buses. I haven’t entirely decided as I am currently attempting to fast-track a set of Hello Kitty & Dear Daniel stuffies for Baby Bro’s GF. We’re celebrating everyone’s birthdays super early this year (a whole month!) because there’s going to be a lot of travelling going on to other cities, other countries & even other continents!

Baby Bro’s birthday present is already decided on, but his girlfriend’s birthday we’ve never actually celebrated in years past because they’ve not thought to celebrate it at my parents’ house. Since the both of them will be off exploring Vienna & Italy, thereby missing both birthdays to be celebrated at home, Mom & Dad wanted to do an early birthday party before Baby Bro left for his internship(?)

I love that amigurumis are so simple & cute looking as a finished product, but good god it takes so long to make the finicky little body parts, stitch them together, add facial expressions and accessories! What you would think to be is a short project, ends up becoming a full working day of crocheting per stuffy, if not more!

Right now I am most of the way through HK, but I still need to stitch on all her facial features and make a complete DD in time to give for tonight. Cross your fingers I will at the very least complete HK, DD will totally be a bonus.

New Topic: The elephant in the room or Why I haven’t really been blogging.

The last two years have been difficult to try to do much writing about. Not because I’ve been dealing with all the stuff SALLY decided to throw at me (in the scheme of things, very little, thankfully) but more so because I had been so frustrated at my old Endocrinologist’s actions, or lack thereof to be more correct.

Back in 2013 Rheumy III wanted to get the ball rolling to start new treatment: Rituximab. The issue was that she needed some information and professional recommendations on how to proceed with reducing my steroid use. As a bit of background information: I take a constant baseline dose of steroids for my original underlying condition Panhypopituitarism which keeps my body functional; and in terms of being able to deal with the stress of being sick, I need to triple the steroid dose or I would die because my body hasn’t the ability to cope.

After 9 months of attempting contact with my old Endocrinologist by Rheumy III, HawtDoc, FamDoc, KidneyGuy, and myself, I decided to call it quits. The ability for us to move forward with Rituximab treatment rested solely on the fact that we were getting absolutely no contact from my old Endocrinologist. Thankfully FamDoc is always on my team to help do what he can and we decided at that point that it was time to find me a new doctor who would actually be willing to be an active participant in my care.

Fast forward two years and we’ve got me an Endocrinologist that I wholeheartedly love as much as the rest of the team of doctors who care for me, is an absolute joy to converse with intellectually during small-talk and who has a completely open door policy regarding questions or concerns I may have — all I have to do is give a quick call to the office and leave a message with the girls at reception that I need to talk to him, or just drop him a direct email(!!) and he’ll call me back as soon as he’s got a spare few minutes in between his patients. Not only that but he is truly of the opinion that it doesn’t matter what he thinks or any other doctor things we should do regarding administering my steroids — I get ultimate say in the final decision.

If I felt that lowering my current dose was just not working for me and it was making my life considerably poorer (versus better), he doesn’t care that other doctors want it lowered even further, he is comfortable & wants me to be comfortable with determining what level is right for me and my current situations. He’s giving me the power and the permission to decide what’s best for me, no matter what any other doctor may think is correct based on whatever references they’re using. That statement is positively mind blowing to me. Having always been “The Patient” listening to “The Doctors”, you kind of just assume that they know what they’re talking about and what they’re prescribing for you. Until the episode with my old Endocrinologist, I’ve never been in the position where I’ve felt unsafe in the care of any of my doctors. They’re a fantastic team that keeps everything running smoothly and with my new EndoDoc, and the new-found support he’s been giving, I feel like all the pieces of the puzzles to my care have finally fallen perfectly into place . I am so thrilled with him, he gets the official nickname “Dr.Cuddles“.

As to the Rituxan treatment starting back in April, I’ve been thinking a lot about SALLY the last few days. The side effects I experienced from the infusions has made me seriously question what is going to happen next. It’s still too early to really determine whether or not the treatment has been beneficial and improved my QoL or improved any of my lung function, as HawtDoc is at the very least crossing his fingers for. I asked him what would be the next case scenario if the Rituxan treatment won’t be continued after my 4-6 month hiatus and he honestly didn’t have an answer for me. He flipped through my chart to see what Rheumy’s treatment options were that she was originally deciding on — IVIG, methotrexate, etc… But none of those treatments are really any “better” or “safer”, nor will they necessarily have better or worse side effects for me.

So, as usual, it’s basically a waiting game until I see Rheumy at the end of July.

In the meantime, I’m hoping to get back into blogging again as I think it’s about time I set my thoughts down again on paper regards to how we move forward with SALLY’s treaments.

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