Feeling Anxious

General Blog
1

Hello wonderful AVM family!

I’m feeling a little pitty pit at the moment. I am getting ready to go back to Denver next week, which in and of itself is no big deal. I’m so used to the monthly embo’s that its just routine. Just a chance to show off a new Feel Good Gown!

But after the embo I’m meeting with a Plastic/ENT to talk about removing much of the coils I have in my face and also just in general the future debulking and reconstruction aspect of this entire journey I’ve been on.

And I’m starting to freak myself out! I think I’m good at giving advice but not at ALL good at taking my own. I rationalize out that it makes no sense whatsoever to worry now cause I don’t know what they will say…but I can’t stop myself from doing it. I know I’m making things worse but I just can’t help it.

I’m super nervous about them “cutting” at all and the possible blood loss associate with this. I know that the docs are good and they will take care of things. But the bleeding episodes that I have had and knowing just how fast and the volume it bleeds…I’m worried. And part of that is totally just the mind set that I’ve had about this. With all of my docs growing up always telling me “don’t cut into it!” and making me super paranoid of that. And then of course there is the issue of the “non-healing” tendency I have. I’ve had The Warthog (the wound on my cheek) for well over a year now and it has no intention of healing. So how is a new wound from surgery going to heal?

Then we get to the superficial and really petty worrying about what this will “look” like. I’ve always looked different. You all know this part, and I’m fine with how I look. But I’m very nervous about what the end result will be. I don’t know how everything will change. I know I will need skin grafts or flaps to replace the skin that is too vascular and has AVM in it. And I don’t know how that will look or how long it will take to heal, how painful it may be… Of course I’m imagining worst case scenarios and then also feeling super guilty and annoyed at myself for even worrying about something so inconsequential in the grand scheme of my health.

My husband, my family, my friends…everyone is great. But for some reason I don’t feel like I can add more burden to them at the moment. I feel like everything is always about me, my AVM, the monthly trips. Our entire lives have been impacted for over two years and the last thing they want or need to hear from me is a pity pit party. But it leaves me feeling overburdened and anxious…ugh.

And of course work is busy and I don’t want to have to take more time off cause I already do each month and my CFO is annoyed…I know she tries not to be but can’t help it. One of the supervisors that works for me is becoming undependable, another one is fighting me on every change, and I need to make some major changes to my department. Plus I have started the Feel Good Gowns business like a total crazy person who thinks I can do all of this at the same time. So I’m feeling a little overwhelmed.

So there is my little pity party. I’m just feeling sorry for myself and a little blue. And the absolute WORST part of this is that because of all the steroids and weight gain I am now “pre-diabetic” and having to watch my sugar levels…this means I can’t drown my sorrows in chocolate milkshakes! What is a girl to do???

So ya…I’m a downer today! Sorry :slight_smile: Thanks for reading my pity party. I did help just writing it out. Hopefully I’ll pick myself up quickly and just be over the feeling sorry for myself stage!

xoxo
Shalon

2

You have permission to feel sorry for yourself every once in a while! I think that is how we release the stress of it all, when it builds up. It can all become very overwhelming! You have been so supportive of all of us, it is nice to have the chance to encourage you back.

Please know that you are in our prayers! And one last thing is a quote which I have found myself going back to quite frequently, and isn’t meant to be preachy, but an encouraging reminder from someone who worries:-)

Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength --Charles Spurgeon

Already know how strong you are! Hang in there!

3

Hi Shalon,

I get scared even I go for an MRI. But I know that there’s always someone on this website that will help me through any problem I have. And with all the work you have done here, I owe you a big “thank you” and will keep you in my thoughts as you go through this new chapter of your AVM experience.

Take care,

Debbie

4

Oh dear…I am feeling this insane desperate need to make this “all better” for you, Shalon!!! And I can’t!!! AHHHHHHHHHHHHH !!!

Let’s start with one day at a time…maybe one HOUR at a time in your case!! You are super busy and I don’t know how you do it all but I also know you love this new business (and I’m uber excited about these new socks!!) so that is great but it is no wonder that you feel so overwhelmed!

But you just can’t look at the big picture of this surgery yet. You need to look at it in tiny little parts and after your meeting next week, you will have some of these questions answered and someone will be able to reassure you as to HOW this is all going to work and turn out. I just know that after you meet with this doctor, you’ll feel a bit stronger and calmer. Somehow they need to put your mind at ease before you go forward with anything, correct?

When I’m feeling overwhelmed and weaker than I normally do and my little mental “peptalks”, that I give myself, AREN’T working, LOL I find a way of being nice to myself and I take a break from all the responsibilities that I have. I just put some tasks aside and only focussing on what has to be done that day. You have to give yourself a break and remember that you are an incredible person who takes on SO much but sometimes, you just can’t do it all and you need to rest your brain a bit! Ya, so I either do that OR I make lists!!! Because making a list just makes it all much better somehow!!!
And more than anything you need to keep repeating over and over that you’re a tough cookie and you can do this because you ARE! I am so glad that you reached out for some support. It is just so important for all of us to do that.
Take care and know that we are all thinking of you in this battle that you are in.
None of us know you it feels to be you but you do show us how to face something with a positive spirit and to just keep on fighting. So thanks for being so great. :slight_smile:

5

I will keep you in my thoughts and prayers. I am sure when its all done you will look back and say “that wasn’t as bad as I thought”. But your mind like any ones mind likes to race and think about the negative. I am sure your family is not burdened. They want to see you get through it and having family there is always a plus. Be glad you have that family support. I wish I did right now.

6

Hey friend! U are an amazing person and you have every right to be anxious right now. Everything will be ok, one step at a time. You have an amazing family that supports you and understand you. Take a break from some things maybe and be good to yourself. Listen to what the doctors have to say and take time to think about your next step. Co-workers…well…they are just co-workers…your health is your #1 priority. Hang tough…u always do…and we all are here for u! Love u…Kim and Jaclyn

7

Of course anyone is anxious at the prospect of surgery, but read what you have wrote. You are listing every and any possible outcome that could happen, good or bad. One thing we all have learned is handle one part at a time, the big picture is to much for any of us to handle. One step at a time is how you need to look at this. You are the most beautiful, strong woman I have got to know, but never met. Compared to what you have already lived through this is minor. Change good or bad is always hard. No matter how they change your face you will still be the beautiful Shalon we all know.

8

Thanks everyone. I appreciate all the support, and really I guess that is what I need, just a little pep talk from all of my wonderful AVM supporters.
I’m still feeling a little out of sorts. And mostly it’s cause I still can’t completely turn off the anxiety! It’s like I have no control over it…which is super hard for someone who is a control freak! Knowing what to do and following my own advice should be easier than this. And I can’t even blame it on the steroids at the moment. Guess I’ll just have to admit to having a “little girl” moment :slight_smile:
The good news is that I DO have a wonderful family, great friends, and an awesome AVM family! Plus I actually recieved my super cool socks for FGG’s and have spent the last few hours looking at my feetsies in bright lime sockies with pretty purple letters telling me to smile and have a good day! I may just never take these off…or at least until next week!
Thanks again guys. The love and encouragement does go a long way to put me in a better frame of mind to move out of my little pity pit! What would I do without all of you!?!

9

Hi Shalon,
Before my last operation (where they removed the part of the AVM in the bone and gave me a iliac bone graft, use the temporalis muscle to create the lining of my mouth) I used to have massive bleeding episodes, which stopped after the operation, since they removed the majority of the blood vessels that were causing problems. Also before the surgery they blocked of all the major blood vessels that supplied the AVM, so bleeding during/ after surgery was not an issue. After the surgery the tissue healed normally just like tissue anywhere else in the body. I found it hard to walk right after the surgery (bc they took bone from the hip) but I was back to my happy 11 year old self after a month or two. :slight_smile:
There was some swelling for about 2 months…

I understand the anxiety…I was in the same place last year… there is so much uncertainty… I did not talk about my AVM to anyone and there was a time when it felt like there was no hope… I did not want to burden anyone with my problems. And then suddenly my perspective completely turned around, the surgery is still ahead but I’m hopeful. very.

I hope work does get better for you.

I’ll be thinking of you on 5/5 of May.
Everytime I look at your photos I think “she’s so beautiful”… keep smiling miss sunshine!

10

Hey Mindy!

You know, that surgery you had as a child, sounds exactly like what the docs discussed with my parents when I was little as well. The whole hip bone to replace my jaw and everything! At the time the docs I had were pretty conservative and decided not to go that route as they felt it was too dangerous and hoped there would be something less tramatic “just around the corner.” It’s hard not to wonder how life would have been different, good or bad, had my parents decided that route.

And I know you understand the anxiety. Completely. I just want to get through to Thursday and have the consult over with. I kinda feel like I’m preparing myself for the worst. I don’t actually think I’m going to get THE worst news, but I can’t stop preparing. Self preservation mode I suppose. And it’s so funny that you and I and our thoughts go down the same paths. You were in my shoes and I’m pretty sure we had a couple conversations back then and I can only imagine I tried to give you a little pep talk or at least offer my support. And here we are with roles reversed. It just goes to show that we all are human, we all face challenges that we don’t know how to easily cope with, an that we all want to help others in this same position. And really it does help. And it makes me feel loved and cared for if not less anxious. :slight_smile: It makes me so glad that we have this support group to make these connections.

I still haven’t really talked more with my family about this. But I’ve talked with all of you and that has been good. It’s been helpful just to get it out there. I’m thankful that “this” family exists. Not because mine isn’t wonderful and supportive, but because you guys know what I’m going through, can offer unconditional support without any guilt or anxiety on my side in sharing this burden. This is a good precursor to sharing with my family. A rehersal or trial run which allows me to get my thoughts and feelings and worries in order so that I can share with my family in a way they will understand without me being a crazy lady just throwing out random worries!

Thanks again to everyone who has responded here and to all of my other posts. I sincerely appreciate it.

And Mindy I’ll be thinking of you on Wed too with the expander :slight_smile: Thanks for the compliment. I do appreciate it. And I’m going to keep smiling no matter what happens! All anxious, beat up, good news or bad news…smiling always makes you feel a little better!
xoxo

11

wow Shalon i always thought of you as this person that has everything together and it just to show me that you are human too you get scared and anxious or even nervous at times i guess is because i don’t have it together i don’t know how to deal with everything i am still trying to know myself but you look like you got it down. i guess what i am trying to say is that i want to be like you and don’t you worry everything will be ok you are an amazing person and you just have to take things in small increments or in other words a step at a time don’t run when you need to walk you just don’t worry it will work itself out you will see have faith in the doctors. love Wendy xoxo

12

I had my 3rd Onyx embolisation last month and my doctors seem to think it was the last one and then i can start with debulking and reconstruction in july. I am feeling the same as you Shalon, my husband thinks im paranoid. I dont think it helps because the doctors keep saying they dont fully understand AVMs. It prob sounds silly but i think i can feel pulses sometimes where they shouldnt be and then start imagining them cutting into me when i have the plastic surgery and me bleeding. I think it is prob bcoz i am so use to hearing bad news that i cant accept good news :frowning: x

13

Hey Shalon You have given myself and so many others the strength to overcome their conditions ,so I send to you love and strength to help you with yours at this difficult time. X

14

Hi Shalon,
I wrote to you before. My son Ryan is actually in surgery right now to have his face and palate reconstructed. He is having a free flap done and will not be able to eat or speak for at least a week. He is just 12 yrs old but is a champ at taking this news! Surgery is expected to take at least 10 hrs and he has been for about 5 now. We have had his AVM removed and believe me it was aggressive and massive, bleeding all the time and it was growing out of his mouth! It was the right decision, but I believe we have the right surgeon. He does not believe in all the coils that were put in Ryan when he was little and seen in Boston and New York. It made things more difficult. We are at UAMS in Little Rock with Dr. Suen. I wish you the best of luck with your decision and path you take. May God bless you!

Monica