Wednesday, May 30, 2012
I'm so STRESSED!
I am very frustrated. My husband has had a headache since Easter. On Good Friday, he was perfectly fine but by the Monday after Easter he was a mess. Its a positional headache which means it gets worse when he stands or sits up. This is not your garden variety headache, hangover or even migraine - at times the pain is so bad that he pukes. Basically, he sprung a leak in his spinal column and is leaking spinal fluid which causes the brain to rest directly on the skull. Its a relatively rare condition and is known to just spontaneously happen. After about a week of no improvement, hubs went to the doctor who sent him to the ER. They ran some tests, tried some stuff, gave him a painkiller and sent him home. Over the next few weeks, nothing got better so he'd call the doc who just prescribed him escalating painkillers...and then anti-inflammatories....and then anti-depressants. grrr. After nagging from me, hubs pressed to doc to get referred to Neurology. He called to make appt with Neuro dept but they wouldn't be able to see him until end of June. wtf??? After nagging from me, hubs was able to get a quicker consult with Neuro. During all these weeks, all hubs can do is lie on the couch with an icepack & a pile of pills.
Between travel for work & my own surgery, I could not attend any of the early dr appts but I was able to go to Neuro. So glad I did. The hubs is just too nice & is such a male. He never really communicates the level of pain he's in or the impact it has on his daily routine (like taking care of our daughter) which makes it easy for the doc to not take him seriously & just brush him off. HOWEVER! I don't mind being a bitch and have no problem browbeating the Neurologist (who I was not impressed by and did not like. She's only seen 4 cases of this condition in a 20year career & is basically useless). She tried to brush me off with a line about how medicine is not an exact science. Really? Believe me, after dealing with a severely disabled child for nearly 10 years, I am well acquainted with that fact and nothing about this appointment has changed my opinion. Silly woman. So, what happened at the Neuro appt? She ordered some tests, prescribed yet another painkiller and sent him home. grr.
With this background, here is my frustration......it was about 10days after Neuro that hubs even made appts to get the tests scheduled & he only did that after nagging from me. Notice a trend??? He's been in pain for nearly 2 months now - 1/6th of 2012 he has spent lying on the couch. Where is the urgency to get this fixed?? I've read a couple papers about this condition online & there was this one story about a guy who had daily headaches for 13 YEARS but when he finally had something done he felt relief in 5 minutes. Touching story, right? Bull!!! When I read that paper, I thought that guy was the biggest idiot. He wasted 13 years of his life. What a pointless, useless expenditure of energy. My husband does not have the luxury.
For better or worse, we have a finely balanced, fragile & brittle way of managing our family life and it *only* works if each of us meets our responsibilities. Lord knows I'm not asking him to bring home a paycheck but I'm not in a position to cover primary care for our daughter. Case in point - our daughter has had a feeding tube in since February. At her school, only the nurse can do feeding tube feedings but the nurse is only at school twice a week which means the other 3 days hubs has to drive up to school to feed her which take about 90min. With this headache, that was excruciatingly painful but she has to be fed & I can't leave the office that much to do it. Also, we are trying to wean her off the blasted NG feeding tube so it doesn't become permanent but this requires he feed her by mouth and he has to sit up for that - but its too painful so its just easier for him to hit the "on" button on the pump and lay back down. Other things he has to do is change her diaper, get her in & out of bed, get her in & out of her wheelchair, bathe her, etc, etc, etc. blah, blah, blah
I offered to bring a nurse to help him out but he declined. I offered to bring family out but he declined. I offered to send them back to his family in Kansas but he declined. Finally, his parents got so worried about everything & this week summer vacation started which means she's home full time now that his father just drove out on Saturday to care for her. Right now, hubs is proceeding through a series of tests to determine where the actual leak is which then allows the docs to inject blood close to the leak in the hopes that the blood clots & plugs the hole. This is the treatment of choice for this condition; it is effective and relief can be immediate & permanent. These tests & treatments certainly involve needles in the back but no knives. These things can all be done in the office & don't even require he goes under. I get that hubs is less than keen about needles in his spine but doing nothing but laying on the couch isn't really working either.
I want to shout at him: "get over it & get it fixed!!!" I'm not mad at him for getting sick but I am truly frustrated about how he has reacted and failed to drive to resolution. We know from dealing with our daughter's medical issues that if you're not driving bus then nobody is. He got the MRI done last night & next up is a CT scan. I asked him this morning when that was scheduled and he looked at me like I'd sprouted a second head. If he was really on the ball, he could have had an MRI in the morning, a CT scan in the early afternoon & blood patch by end of day. Shit - he could have been done with this by dinnertime. So why the fuck isn't he trying to make that happen???? GRRRRR!!
I am a stress eater. Yup, you can imagine what my eating has been like lately. mmmm, sugar - my drug of choice.
I'm still only about 4 weeks out from my own extensive surgery. Yup, you can imagine how well I'm following doctor's orders to rest & not do too much. This past weekend I did waaaay too much. I'm less "healed & sealed" than I thought and ended up popping open a couple stitches which are now crusty, oozing, itchy & bloody. crap.
All I really want to do it go to the gym to workout my aggressions & sweat my frustrations. I never thought I'd say this but I truly miss the gym. sigh.
I AM SO FRUSTRATED!