Chiari Malformation Community
back home after second hospital stay - overwhelmed
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back home after second hospital stay - overwhelmed

not sure if this is more of a question or a vent - sorry my posts are so sporadic but I think you all can understand why.  Well, had decompression on 10.17 in NC with Dr. Couture.  Stayed one week due to pain being pretty severe.  When I got home, I didn't do what I was supposed to, which was pretty much, do nothing.  It's so hard giving up that identity when you have always been the one to take care of everyone else's needs.  My mother in law (new) and Brother in law (17) came to stay since my new husband was soon to deploy.  I thought I had everything under control when I left, lists, notes, meal stuff, meds for the kids, chore info, etc.  CAme home to a messy house, just everything was out of order.  I'm add and I NEED my structure or I lose my mind.  I was a single mom of mty 3 kids so I'm used to doing everything and it's so hard to ask for help for me.  I expect people to know what I need because I'm so good at anticipating what other people do, so I don't ask, then get frustrated, or I feel tension if I feel like I'm making someone go out of their way for me.  I read body language really well so it's not invisible when you're being annoying.  I hate that feeling.  I didn't expect my mother in law to be a day sleeper - literally my daughter wakes her up at 630 am to give her enough time to get my 3 youngest fed, dressed and school bags ready so she could get them to the bus stop - we thought she was walking or drivng them.  We had friends offer but thought it was covered.  Find out it's my brother in law - he's 17 GED and he's good with the kids, but he has issues.  he's a big kid and while defending my kids getting teased ended up scaring some of the other kids - so now mil and bil are offended because they're just trying to help. MIL goes back to bed and doesn't usually get up until 3 to 4 pm- when the kids get home - meaning no household chores get done during the day.  my 14 year old daughter asked her if she would check on me around 9 am to make sure I'm ok and eat some breakfast because I'm terrible about eating and she got very offended saying that 9 was too early to be up in the morning...anyway...

My pain at home was terrible - I had a visiting nurse on Friday 3 NOV my bp was high and my pain level was at an 8.  I was on perc 1 t 2 every 4 hours as needed and one 5 mg val every 8 hrs, plus celebrex twice daily (arthritis pill?) and my regular stomach meds.  By monday I knew things were getting very wrong.  Tuesday I didn't even get up to say goodbye to the kids, I woke up at 10, alerted my neighbor and of course before getting there had ameltdown with my mil and bil about how my neighbor yelled at him about the bus stuff - she didn't he's just a spoiled baby who runs to mommy to fight his battles.  at 1 I finally get to my neighbors, she fed me, called my nurse for me, made me drink (was dehydrated) and let me nap in her guest bed.  She checked on me to make sure I was ok, alive, breathing.  I slept almost the whole time but went back home at 430 because the kids were home, and just layed down on teh couch crying in pain.  My mil was patting my head.  I send DH a text to pick up my script at publix and some gatorade and milk.  15 mins later he comes downstairs- I didn't even know he was home from work!  he was napping.  He knew where I was, didn't come see me to check on me, knew I was really feeling off because I told him I don't know if I'm going to make it for my appointments tomorrow (pt, pain management and visitng nurse).  I go to bed, at 730 he wakes me, gives me my meds, makes me eat some mac - by this time I'm saying call the NS in NC because it's bad - can't get in touch, I start puking so he calls 911.  Rushed to Memorial hospital in Savannah and was admitted tuesday night.  

So far they think it was/is chemical meningitis or a reaction to the duraplasty they used during the surgery.  I spent the first 3 days in a lot of pain, on liquid diet.  By the 3rd night I was not sleeping and my night nurse offered my breakthru perc but I'm like what's the point, it's going to delay the one that works for the worst pain I have and then I'll still feel like crap tomorrow.  She explained to me how to talk to the doctors about pain, what was working, what not, write it down, to EAT my liquids so I could get real food.  I struggled - called a friend from NA (7 years sober, I am not an addict, but respect his recovery and I knew he could understand) so he brought me his medallion at 8 am and the serenity prayer and I made it thru the night with no breakthru.  

Got my meds changed to things that work - long acting - they are not as strong at home obviously but now taking careful notes about when pain starts, what works for when and I have a whole NEW doctor team down here that will not just toss me around.  My new neurologist works with peds and adults with EDS as well, we're having genetics done, I have all my sign language interpreters and needs in my files and my NS in NC I feel confident that he would not have let them take care of me if he didn't trust them and my NS in Savannah insisted I had a wonderful surgeon.  Taking it slow but I'm struggling with the emotional things now - the distance with my husband.  The limitations I have - my eyesight is really bad, using a walker, cane, being told no all the time.  I feel like I just lost half my identity - I was a mom, housewife, and proud of it.  Just gotta figure out how I do it all now.  I still have weakness in my left side...ugh.  I'll end this for now cause I should be napping - Just gotta say I know better now to not take this surgery lightly.  I don't regret it.  I needed it, probably not just for the medical but to help get some more perspective and putting myself first.  Thanks for listening....        
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I am getting ready to have surgery in 3 days...I am so sorry your journey is being such a rough road with lots of pot holes. I think sharing your story is reminding me to let go of some of the chores and relax and let God guide me. Hugs to you!
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620923_tn?1405964489

  Hi...thanks for the update....I had no idea what u were going thru....so sorry, but ur identity is still intact, u r just recovering...and once u do, then u can resume ur duties..for now where blinders on how well the hose is kept...that is not as important as u healing...u need to be able to relax for this to occur too....do u have someone else that can stay with u? ur 14 yr old seems more level headed then ur MIL, sorry to say....

I am confused, did u get dx'd with EDS?...and what issue did u have with the dura patch...which type did they use?

How are u feeling now, did they say u may have a leak?

U got it right, u have to put urself first, learn patience and things will fall into place....u can not rush this recovery other wise u could have set backs...

Rest up and relax as much as u can : )

((hugs))
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620923_tn?1405964489

  Hi and welcome to the Chiari forum'

I see u r scheduled for surgery...I hope u post where and the date on the surgery date thread...and we will post a prayer thread for u.

Not every one has these issues that this poster had....we are all diff and as long as ur Dr is well experienced and tested u for all related issues that will help avoid some issues post op....

  Best of Luck to u : )
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