Sick of this!

Well I had my fist embo on the 3rd of June it went pretty well except for the fact that I woke up with numb legs. No will tell me what happened and the surgeon acts like he has no idea and is completely surprised this could happen. They tried going in on my left and apparently couldn’t get in so they went in on the right side and they did something to my femoral nerve. They are not being helpful with this situation or really anything…surgeon doesn’t want to know about whats going on with me as a person. I just feel like no one understands at all, no doctors, friends, family no one! My hair is falling out, I burst into tears for nothing, constant headaches, emoitions all over, can’t hear well, can’t stand loud noise or too much activity. The list goes on and on, so the doctors have said that I am having an emotional breakdown, that covers all of these symptoms! They put me on porzac and call me crazy and that is all the help I am getting! I do feel like I am losing my mind sometimes, I don’t feel like myself much at all these days. I am soooooo tired all the time and not having anyone understand me makes the crying worse. I have been forcing myself to walk even though every step is extremely painful and there are good things happening sometimes but for the most part I feel alone and misunderstood. Everyone thinks that I’m good now and life just goes on, they don’t get the other stuff that’s going on and at church I just smile and say I’m good. I don’t want to be a complainer but it sure would be nice if there were someone around me that understood what I was going through. My life is on hold, I have no job, quit school, trying to be a mom to 3 kids and don’t have one doctor that understands what is happening to me. Sorry that I went off, I know if anyone understands it’s all of you. I just want my life back, I just want me back!

I would have to say that I felt worse after my embo than after my crainiotomy. Also I think that was the point that I really thought about what was going on. I had only 20 days between discovery and procedure and was in shock about the whole thing. It was a hard pill to swallow and I lost it! The thoughts that went through my head were scary! I am so sorry about your hair. It was so hard for me when I lost my too and I am not talking about a few strands here and there. It was clumps and I quickly noticed bald spots. Big bald spots!!! It has taken 8 months for all my hair to grow back and all the nasty sick hair to finish falling out. I am not sure what style your wear your hair, but maybe go and sit in your stylist chair and ask them to give it a new look that might make it falling out less traumatic and easier to care for. You will get yourself back!!! It will just take time and trial.

Oh Kelly, I so much know what you mean! Especially wanting your life back (I say that at least once a day). I am also tired of doctors who think we don’t know what we’re talking about…excuse me, it’s MY body here that I’m talking about! It’ok to complain, who wouldn’t if their brain had “issues” impeding with our daily lives. You are still here and fighting! This site is great to come and vent…think of it as a safe place to weed out the bad and find more strenth to go on. One day at a time…works for AA, so why not work for AVM!

Kelly, I’d recommend buying a cute pair of heels, but considering the numb legs that suggestion may could just make matters worse! :slight_smile:
I had an issue with one of my legs post embo years ago. It too was due to the nerve that is close to where they put the catheter in at your artery. I think I had swelling that was putting pressure on it or something. It’s hard to remember now. But for quite a few weeks I had a very “limp” leg and could only lift it about 6 inches and then movement would just stop. No pain or anything, just a complete inability to move it any higher. I was freaked out like you said. I think the difference is that my docs were amazing. Had me come in for an ultrasound (did you have one) then sat and explained it all to me. And really I just had to wait. I know it was a while before I was back to normal, which made climbing the stairs to our room difficult! But it did get better. I bet the same will happen with you. If only your docs had shown a little more compassion to you, you would probably feel a lot less freaked out. It’s a hard balance for them, I’m sure. They are great at their ability to heal the body, but not always the mind. Finding a doctor good at both is probably pretty rare. Is there someone else you can see to make sure it is all good? Like your primary care doc?
You know, I bet there are some people at your church that would love to help you, listen to your “sob story” and provide you some of that physical and emotional support you need. Is there a “ladies” group that does things like this? Don’t be afraid to say “hey, I need help!” cause so many people will be willing to do it. And yes, we get it and we are a great place to voice your concerns to people who DO understand. But we can’t actually hug you or hand you a tissue for your tears. I bet some of your church members can fill that hole!
You’ll get you back. Maybe not exactly the same version. Hopefully a stronger, kinder, more compassionate and understanding version. That’s always the silver lining to this ugliness. We are able to see and embrace the “goodness” in ourselves that often gets lost while we are busy living.
Good luck. Keep your chin up. Watch a sad girly movie so that you can cry. And at least look for some cute shoes but don’t buy them till your legs are better!!! :slight_smile:

Hang in there Kelly, You will get through this.

Kelly, I would guess that a whole lot of us here know what you’re going through and can sympathize. It sucks when you feel like your doctors aren’t listening to you, and you must be very frustrated. Hang in there and you’ll get a fabulous new life, one that isn’t quite so difficult. And about the hair…My husband made the decision (as I was in a coma :)) to have my head shaved after my crani. I didn’t know it for quite a bit later and when I touched my head I freaked out! But then hubby brought me a cool scarf in the hospital and then new ones every so often. Let me tell you I rocked the scarf look. Hair is overrated anyway!

Kelly, that’s why this site is great, you can talk to people who know just exactly what you are going through. Hang in there !!!

I’m sick of this too, Kelly! I know what you mean: I just want the old me & my life back too. Everything I worked so hard to build up & ‘accomplished’ in my life has now been destroyed - all in a matter of seconds / in a blink of an eye / at the snap of a finger. I just want to get my normal life back, as all this has been a nightmare… my home is gone, my employment is now nonexistent, my health insurance is gone, my independence & privacy are completely gone, etc. No one (other than this site) seems to be of help. All the information I have is by my own doings… not the docs, therapists, family members, etc.

Hang in there Kelly. Our life has been changed forever but work with what you have and build upon it. Have faith you are not alone. As for the hair. I love wearing short hair. I also have a collection of hats. I love wearing new hats. I am also looking for a fancy or cute cane.

Thank you all so very much, this was just what I needed. I had been on here after my initial bleed but then felt like I would be ok that I just didn’t need support, “I had this”. But that is not the case, I tried to buy into the thought process that my life would be the same. Now it’s clear that is not true and I feel alone. But thankfully if nothing else I have all of you. I really mean it, it’s an amazing feeling to have the support that you are all willing to give me and I plan on using it and giving it. Shalon, you nailed it, I love shoes. I figured it hurts no matter what’s on my feet, new pair of open toe wedges just what I needed! Thank you all so very much! You all have a special place in my heart!

“Everyone thinks that I’m good now and life just goes on, they don’t get the other stuff that’s going on and at church I just smile and say I’m good. I don’t want to be a complainer but it sure would be nice if there were someone around me that understood what I was going through. My life is on hold, I have no job, quit school, trying to be a mom to 3 kids and don’t have one doctor that understands what is happening to me.”

This is me to a “T” besides the mother part and three kids lol! I had to do the rest of that such as quitting school and keeping a smile at church (I’m on the pastoral staff) when no ones understands! This is why we really do need this support cause everyone here does! Blessings to you Kelly!