Well, it has been another few days since I've blogged but that is because I have been running three miles a day, shopping endlessly, driving long distances, and eating out daily.
JUST KIDDING.
I haven't done ALL of that. First of all, never in my life have I chose to run three miles a day. However, I have been able to sit up and walk around WAY more. I get my own ice packs now! Sounds so minor, but it is one less thing for Mama, Daddy and my brother to do every half hour.
I have shopped a few times. In the last couple days I have tried to go to the mall (only for about a half hour), Home Goods, Target, and Lowe's. Yes, Lowe's. The home improvement store. I am desperate to get out some days...it feels good to see other humans and different scenery.
I have not driven long distances. I actually can't drive at all. I can't even imagine driving. My neck does not have full mobility, but I can turn it more than last week. I also still get an occasional dizzy spell, which would probably not be good when driving. I have been driven by Mama and Dad, however long distances are not an option yet. I am hoping to make it down to LBI somewhat comfortably on Monday. As of now though, every bump and hole in the road causes serious pain. If I leave my head sitting upright without leaning on the back seat, every bump causes what feels like a mild whiplash. However, if I lean my head back onto the seat, my nerve pain is so bad that every bump feels like my head is on fire! I can't win in the car!
As far as eating out, I have only done so twice. It's difficult because I am still not very hungry. Advice to anyone that is attempting to lose weight...get brain surgery!!! Because of all the medicines I am on, I have very little appetite. Before my bath the other morning, my mom made me get on the scale. I have lost eleven pounds since my pre-op appointment. CRAZY! Maybe I should be trying on bathingsuits now...
Speaking of medicines, (this is gross and probably TMI, BUT...) I am extremely constipated. The nurses claim it is perfectly normal, however the pain that I felt this morning...IS. NOT. NORMAL. Without getting into too much detail, I felt as though I was in labor. My mom claims I have no idea what I am in for when real labor happens, but this pain was enough of a birth control for now. ;) This yuck paragraph is also probably an indicator as to why I don't have a boyfriend, but for my fellow Chiari people that are reading this, I want them to know that it is something I dealt with during recovery.
While I'm discussing issues I am having, I also want to say that I am supposed to clean my incision daily. At the hospital they gave me scrub brushes to do so. My mom is in charge of doing this, except the last few days the area around the scar has been so raw and sore that I have asked her not to touch it. Yesterday, we decided it was necessary to wash it after my bath. She attempted. It didn't go well. I was in tears. It was so sore and for the rest of the day I was very uncomfortable. I do still have the firey, neuropathy pain on the top, left side of my head. Again, nurses say it is normal. Okay, but ouch!
On a more upbeat note, I am feeling more like myself for the most part! I found myself singing in the car today, laughing with visitors, and talking school with one of my best friends yesterday. I feel more...normal. I was getting frustrated with myself earlier in the week and Mama just kept trying to remind me that I am not even half way through the expected recovery yet. So, I am trying to remain positive about the things I am able to do, such as getting my own ice pack! See, it really is a big deal!
Some other things I can do now ON MY OWN include: sit up for extended period of time, walk without support, get my own ice pack, fill up my water bottle, get up in the night and go to the bathroom by myself, walk up and down the stairs while holding something (along with the railing), and shave my legs. I also have been writing thank you notes and watching Homeland in a marathon way (if you don't watch it yet, DO IT!). This all brings SO much excitement for me and my family.
On a serious note, I had a distant cousin pass away this week unexpectedly. Earlier this year I had a good friend pass away from an illness. When these horrible tragedies happen, everyone can see how families and friends really come together to support one another and share memories of these special people. Texting, phone calls, Facebook, and visits help the grieving process. It is so unfortunate that my cousin and my good friend were not able to physically see and feel the positive thoughts, vivid memories, and kind gestures that came after they passed. Still, I have faith that they are both able to see and feel the love where they are now, up in heaven.
Not by any means am I comparing these deaths to my surgery. Nevertheless, I do feel I am very, VERY lucky to have the opportunity to see, feel and accept the positive thoughts, prayers, and kind gestures from my friends and family. I am seeing first hand how much support and love I have coming from directions I never would think of. Old friends, old neighbors, old coworkers, old bosses, distant family, new friends, new coworkers, family, blog readers, and even just aquaintances have extended an offering hand. Sitting here, I am tearing up thinking about how overjoyed I am, and how each text, facebook message, card, and visit has kept my positive outlook on this entire experience. For all of this, I thank you.
:)
Hi Amy,
ReplyDeleteThank you so much for posting your journey. My daughter, 19 has Chiari - along with EDS, POTs. She had to drop out of College last week due to Neuropathic pain/CRPS. We have been following your journey as we are headed up to Chiari Inst in NY next week to consult for surgery. My question is, did your surgeons feel the neuropathic pain was caused by the Chiari and could be helped by the surgery? I appreciate your time and I pray your recovery continues with less and less pain daily. Side note: Small world - talked to two friends last week who both told me your story and I told them I already follow your blog. We are in Cherry Hill, NJ.
Hi! What a small word! I love that someone I don't even know is following and relating to my blog! It's so exciting. However, unfortunately, you are following for a no fun reason. Good luck with the consult next week!
DeleteAs far as my neuropathic pain, I didn't have it in my HEAD until after the surgery and that is due to all the nerves they cut through. However, the tingling in my hands, feet, and lips, the falling and dropping things, was all symptoms of my Chiari and are actually the number one reason we decided surgery was necessary and sooner rather than later. All of these symptoms have been relieved since my surgery.
If you have any further questions please don't hesitate to email me. I would be happy to help anyway I can!
aburns1021@yahoo.com