Had the dressings removed yesterday. The wound at my sacrum looks like they were digging for gold, and feels that way too but it’s just off center enough to not impede sitting. They couldn’t wrap the wire around my hip in one go so they poked it out just above my hip and fed it back in to the device in front. He had to take 2 stitches out of there. It hurts and all three are bruised but it’s not bad at all really. They didn’t put the device under my ab muscle but just placed it on top in a pocket they made in the fat. It’s a little disturbing that I have fat there but he did mention there was little to work with. Go menopause (sarcastically said). I used to have a tiny, tiny waist but no matter what a persons body shape is, menopause moves things to the middle. Anyway, the skin is mostly holding the device which is why it sticks out. I can actually tap on it. The good thing about that is I can hold it up, from bouncing, with a belt. And, because I wear low wasted jeans, it is cushioned at the top of the waste band. Summing it up, the location is perfect. This is what I had asked for back in April.
So on to surgery 2, November 30th
But then…. he looked at the schedule and said that it was canceled. What? I flipped out. The stress and strain of it all finally hit me. I’ve rearranged everything and am just holding on to get everything done. I started crying uncontrollably and begging him not to do this to me even though it wasn’t he who was responsible. I begged him to get me back on the schedule. I must have looked like a train wreck when I walked out.
I came home stunned. I texted Zack but a text can’t convey how I felt/feel. I wrote an email to the surgeon:
I was just in today and was told my scheduled surgery on nov 30th was canceled. Please don’t do this to me. I’ve been waiting for so long. I never said to cancel it. I even did pre-op for it so don’t understand. I’ll come at 530am if needed, please don’t cancel my surgery.
If someone can get back to me on this as soon as possible I’d be grateful. I feel like I’ve been so patient and did everything I was supposed to and now I’m being, I don’t know, punished or discounted. I’ve scheduled my life around these dates and people helping me have changed their schedules too.
Can you please let me know what’s going on?
And then I wrote a letter to the woman’s coordinator who is an amazing advocate and will stop at nothing to make things right for us (women vets).
It appears someone canceled my surgery on November 30th without informing me. I begged them not to do this to me. I only found out because I had a follow up with urology and the doctor saw it canceled. I would have shown up that morning otherwise.
I feel like I’ve been more than patient and now I’m being slapped in the face again! No one has even called to tell me, I don’t understand. I’ve had to rearrange everything when they changed the date and now; will I even get anyone to help me post surgery?
It was a done deal, I just don’t get it. I need the old device taken out as well as injections into my bladder. I’ve waited 8 months, since the original implant, to have this fixed so I can finally begin to heal from all this and get on with my life.
I feel like there’s someone out to ruin my life. I know it’s not true and probably just a glitch but here I am in limbo again, waiting for phone calls, waiting to be scheduled even though I was already scheduled. With holidays coming am I going to be put off till next year?!?!?!?!
I just got a handle on the anxiety, so much for that.
I don’t do limbo well. I didn’t go to a meeting last night. I’ve been binging non-stop which is reflective that my life is out of control. Luckily it isn’t effecting the number on the scale too much. I can’t go share at a meeting about this because they will all just say stupid things like, “why don’t you contact _____ to investigate this?” “Get a lawyer…” blah, blah, blah. That’s not the issue and you don’t do that with the VA. I just want my surgery so I can get on with my life.
Maybe I’ll hear something today but I doubt it. I will have to settle back in to limbo-land and will some how have to survive. I don’t like it, I don’t like chaos and uncertainties in my life, it causes undo anxieties… this will not be fun. But it is what it is and the only thing I can do is write my daily list of things to do and just do those. Go to meetings and focus on other people, pray things will work out and leave it at that.
Somethings I did learn:
- I need much more emotional support after surgeries. No matter how much it costs I will be scheduling many more appointments with my therapist next time. If the surgery is delayed to December though that won’t fly since she’ll be off much time for vacation.
- I need to set up a realistic recovery plan. I am far more exhausted than I can imagine. I get practically no sleep and then walk around like a zombie all day.
- I need to take pain meds longer than I want. I stopped them because of the nausea.
- I need to get back involved with community events where I live so I can have more support than just meetings.
Okay, thanks for listening…