This whole thing has been one big whirlwind to get to where I am now. I was sort of diagnosed in March by someone that had no idea, but was confirmed by a doc that knew what he was doing the middle of May. I guess it is all catching up or something, I really don't know.
I'm 2 weeks (today since it's Thursday) post-op. I know the feelings I'm having are normal, but man, this is not me.
I want to cry tonight, and don't really know why. I feel like I have totally turned my family's lives around because they are having to take care of me since I can do literally nothing right now. Of course my older sister is okay with it all because she's getting a break from her house...but I know her husband is giving her a hard time about it and her two kids (17 and 14) don't like that mom isn't there all the time to help or do whatever. My dad's boss is being a jerk and is now requiring a doctor's note from my doc saying he was up here for my surgery and that he had to stay after I was released to help me.
I guess I'm just kind of having my own little pity party thinking how much I have turned everyone else's life upside down too.
I'm not one that has ever been a crier for much of anything and I feel that I'm wanting to cry like 75% of the time right now.
I know, logically, that this is all part of the healing process, but I don't like it...I want to be "normal" again. :(
And basically I'm just kind of venting because I know beyond anything else, y'all get it.
Thanks Emmaline, I appreciate it. Today is a better day, not sure why I wanted to do nothing but cry yesterday…probably part of the brain healing process. No wanting to cry today. So, that means a better day.
Thanks for listening last night/this morning. I guess it’s all just kind of sinking in what this all means for me in the future. One day at a time…
I went through the same thing healing. Everything you said is the mirror image of most people that have this surgery. Healing is always frustrating, but you always have here to vent and we understand.
Thanks....just knowing that it mirrors (heck, closely resembled would work for me) what most of y'all went through as well is actually helpful. When I was first diagnosed by the doc that had no clue, I felt completely alone. I'd never heard of it why would I think anyone else would have either.
Finding this site, and a couple of others has really been helpful. I just wish I would have found it before surgery, but I think at that time I was just in shock and looking more at research than at support type stuff.
Right after I was diagnosed, in a completely random conversation, a coworker discovered I had Chiari and a crossfit gym in town was doing a challenge to raise awareness/money for Chiari. She and a friend were planning on doing it but had not come up with a name. After my story, they decided to name their team after me #beastmode_______ (my last name). Well, I ended up getting shirts made, and my family all wanted shirts as well. On the back of the shirt is a purple ribbon that just says "Cure Chiari". It is amazing the number of conversations that have come because of my family wearing the shirts. I do like the idea that what I'm going through is hopefully getting the word out and helping spread awareness....With awareness, maybe eventually a cure.
Hello, I had my surgery 9 weeks ago and I completely understand how you are feeling. I too felt guilty about the help and care I needed. What I can say is that things will improve very soon. The first two weeks are hard with emotions, pain, fatigue, and just realizing that you have experienced such a traumatic event. I am trying each day to battle this depression. I know in my heart how very lucky I am to have had the procedure and opportunity to get better,but all of this has taken a toll on my feelings of independence and being strong. Sounds like you have a very supportive family and that is what will get you through this first phase. I don’t have pain anymore, the horrible sounds in my ear are gone, and my foggy brain in becoming very clear. We also are dealing with the grieving process of accepting the fact that we have this. I am 54 and have been searching for answers for years. Take care and when you feel like crying, just cry and know that you are not alone.
Cole, so sorry you are so blue. This is such a difficult recovery. I got depressed after surgery- I cried a lot and felt like I would never get better. I promise little by little you will start see small changes in the right direction. It took me about 7 months before I started to recognize myself again. Just know that you are not experiencing anything unusual. Hang in there!!
Hello, I hope you are feeling even better today. Keep your chin up the road to recovery is long and rough. But once you get done you will think "gosh I have come a long way". You can do it. Feel free to vent anytime you need to.
Thank you everyone. Today has actually been a pretty great day. I had to take pain meds at like 3 this morning and then about an hour ago, and that is all I've had to do today.
I also got a haircut today, she came to my house. My hair was really aggravating me around my incision site so I decided to cut it. I haven't had it this short since I was probably 10. :) I cut off about 16 inches total. 14 of those in a ponytail to be donated somewhere.
Emmaline, it wasn't a walk, it was just a Crossfit competition, but it was for Chiari awareness. And at this point, I'm all about anything that is for Chiari awareness.