Hello, friends. Sorry I’ve been a bit absent lately. All my spoons have been going elsewhere, and with the decapeptyl shot wearing off, I’m a little more short on spoons right now. More pain, more vision issues, more bruising and circulation trouble, more vertebrae shifts and head pain… I’m fighting a Sjogren’s flare, too, which just complicates my vision and digestion issues, as well as circulation. I just can’t get enough salt lately! I feel like half my diet is salty potato chips.
I did put together several of my accumulated research articles and send them to my SSDI attorney – complete with highlighted pertinent parts and a timeline of my illnesses and injuries – so he can get them uploaded to my digital file for all parties involved in my hearing to read through beforehand. My hope is that everyone will be sufficiently informed about EDS and its complications that I don’t have to explain quite as much at the actual hearing. I know I communicate much better in writing than in person, so I’m very much dreading the interrogation I’ll face. Anxiety only makes me worse at everything, so I’m terrified I’ll not say enough or of saying things the wrong way so as to sabotage my chances of approval. Do you know anyone in the US who was approved for SSDI based on EDS and its comorbidities? I’d love to hear about others’ journeys and what helped them. I think I’m doing as much as I can within my abilities, but I’m always open to more help on this. Unfortunately, my hearing is at a time when I still don’t have several things officially diagnosed, so I’m worried it’ll be another situation where I’m viewed as an exaggerator or faker somehow – exactly what has kept me from getting things diagnosed: I’m too much of a badass, and no one wants to accept that I’m just that tough and able to function through the suffering.
Aside from that, I’m starting to get more nervous about the hysterectomy I’m expecting to have soon. I go back to the surgeon July 25th. I’ve been trying not to think about it and to devote my mental resources to the SSDI hearing, but each little stab in my gut just reminds me how much I want all that junk taken the fuck out! I can’t eat any sort of animal protein any more. It all causes some problem or another, all with incapacitating pain. Actually, to be honest, I think I’m most concerned about what I’ll wake up to with my intestines. I know there are blockages in there because I can feel them – I can feel stuff get stuck, and I can feel it move when I massage my tummy. I can tell you where at least one big blockage is exactly. I guess I’ll have more to mull over after seeing the surgeon again. I can’t wait to put a stop to the pain, though. And the hormones!! Holy Hell, am I done with the damn mood swings! Hubby is, too! Poor Aspie is so lost on how to help me with all the emotions.
I did get to spend the afternoon here at home with one of my oldest friends yesterday, and it was so wonderful! We just sat and chatted, catching up on all the stuff that you just can’t quite talk about properly over the interwebs. Sure, we could chat on the phone more, but I just hate talking on the phone so much. I never process well on the phone, and it’s always awkward, no matter how well I know someone. Anyway, it was such a comfort and mood lifter to get to spend time with one of the greatest friends I’ve ever known. Wore me out because I was upright longer than usual, but I’m so glad she was able to come over. I forget sometimes that I do have a lot of spectacular friends – they just don’t live close enough to hang out, and/or they’re never online. I’m hoping to get better about initiating contact with my many long-distance friends. Hubby will be away acting as Medic for more training (of others) from July 14th through the first week of August, so I’ll definitely be extending more invitations to keep myself away from the loneliness pit. (Hubby’s new job an hour south is going well so far, and we’re thinking about moving closer. More on that later…)
To those of you whose blogs I’ve been neglecting – I’m sorry. I’m not ignoring you. I’m just devoting my resources elsewhere for right now. Feel free to email me or find me on Facebook if you’d like to catch up/chat/vent/whatever. I’m around. I’m just not reading much that isn’t necessary reading for medical stuff. I’ll get back into the swing of things soon, I hope.