Today was an important appointment. Finally got some paperwork filled out by my specialist.
There are a few things that these appointments do.
1. We have to specifically go over every single one of my limitations due to these diseases. Everything that I am NOT able to do because of pain, swelling, lack of energy, and any limitations created by medications that I take to try and lead a semi-normal-seeming life.
2. We have to identify future plans - which, right now, are focused on future diagnostic testing for a possible immunodeficiency, and a surgery. A big one.
3. He has to write a prognosis for the future. This one is not something that I try to focus on often. I tend to try and live day by day. Yes I know that I will always be in pain, but I also always remain hopeful for good days, improved treatments, and even the (slight) possibility of a cure - however far-fetched that may be. When I think of it all logically, I know what my prognosis is. Though it doesn't make it easy to hear - and absolutely does not make it easy to read when a specialist writes it down on paper. On record:
"Prognosis:
Will likely never recover. Will likely not improve."
There is still a possibility of improvement yes. But as he said today, I am ALWAYS on the verge of a severe downturn. There is sometimes no warning, any life event (good or bad) can act as a trigger or as a catalyst to a prior trigger. I am always on the verge of a dangerous and serious episode.
Now once this appointment was finished and taken care of - NOW I can actually make some phone calls and appointments and get to work on scheduling and more paperwork.
One huge part is taken care of. Now I have twenty or more other things to take care of in the coming weeks.
Busy busy busy.
I'm so glad that after an afternoon like this, I get to come home to puppy kisses and good food. Decker cuddles are the best any time - but they're even better when I just need to stop and take a minute to myself.
Errands galore tomorrow. Bedtime 💤