Feeling blue

I’m feeling blue and am struggling to accept my new reality…

I had a brain AVM removed off my spinal chord on October 4, 2016. I was able to do physical therapy until my $6,850 deductible started over this month (January 2017).

I woke with parathesia on my right side. On that side I have decreased sensation, constant burning from my waist down (feels like someone kicking my leg constantly while it’s waking from falling asleep), no ability to feel temperature and a “zapping” painful feeling whenever something hot, cold or metal touches anywhere on that side. I’m not able to get much sleep even with sleep aids because I have no relief from the symptoms. Not a single minute of relief for over 3 straight months. I feel like I’m going a little crazy. I have no energy, and am in constant pain most days. I just feel achey and still have neck pain. It’s been over 3 months now and I’m really struggling to stay positive. I think I’m struggling more because I am a high energy person and move, think and talk fast and I am not able to do what I’m used to being able to do. I am normally very positive. I am missing my only daughter’s senior year before she leaves home. We normally do a lot of things together. I do take advantage of time we have together but it’s not the same. I’m a substitute teacher and normally sub at her high school every day and get to see her and hang out during her school day too. I’m not sure when I’ll be able to go back to work or if it will even be this school year.

I’m afraid I won’t ever be me again and am not ready to accept the “new me” with limited abilities.

I struggle with feeling sadness, it’s a very uncomfortable emotion for me to sit with so then I beat myself up that I’m not being more positive.

Ugh. I’m just feeling alone and feeling like I’m letting everyone down around me. Fortunately I have a wonderful and supportive husband. He’s out cooking me dinner with our daughter right now because I didn’t have the energy to cook. I am also fortunate to have great friends in my church and community that have helped serve me and my family. My parents have been very supportive emotionally and financially.

I just miss being me. Positive messages are appreciated but I think I just need to hear I’m not alone in all of my fears for the future. I need to hear it’s going to take more time but it will get better.

Thanks for reading my story. :purple_heart:

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I cannot imagine how you are feeling chockemarock, but what I can assure you of is that you are not alone no matter how it feels. There are always others that have felt the same pain and helplessness but they kept fighting and pulled through, You can too, Stay strong you have nothing to lose :slight_smile: , Take care my friend

Martin

You are absolutely not alone. Had my avm rupture in 2015, still can not accept disabilities. I have lost any hope and don’t know what to look forward

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Thanks Artem for sharing with chockemarock, I have always thought that when we set our goals very low and small they are achievable set it to be the simplest things and this way you both will see progress, One thing I can say is that I had my bleed at the end of 2013 and I am still recovering, The brain heals slowly , very slowly and this makes us very frustrated.

Carrie,

It’s a long journey and takes a good deal more patience than might be fair but I am buoyed up by stories from others. Today’s favourite has to be John P: Surviving The AVM Brought me What?

Hang in there.

Very best wishes,

Richard

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Don’t feel bad,your not alone, I’m dealing with same issues 27+ yrs, post surgery, it’s not you, it all the people around you that don’t understand,avm, we are all here for each other, reach out and ask questions, best of luck to you, takecare

Feeling Blue,
I had a very different type of AVM than you had, but at first
I did not expect to live out the year. There were so many
issues, but slowly things seemed to improve, and after
about 4-5 years things were back, for me, close to as
they had been before the AVM. May this also happen
for you, but in a shorter time frame.

You know those doctors do not know everything, and
sometimes we surprise them as well as ourselves.
John

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I still struggle with what is going to happen. I have a tough time dealing with the “new” life. I wonder what I’m supposed to do. All I can tell you is you keep taking the next step. I’m getting better and I know you will too. May Jesus bless you.

Zac Steinfeldt

Feeling Blue: Most, if not all of us have felt as you do now. Having an AVM is no joke. It’s hard to deal with and the journey is certainly scary, difficult and different for all of us. While all of us are at varying stages in adapting to our “new normal”, know that you can always count on us for words of encouragement and support. I was diagnosed in Nov., 2014 after a brain hemorrhage and I had the Gamma Knife Radiation procedure in 4/15. I lived in fear each and every day and I prayed each and every day. I wanted the “old” Sharon back. In 9/16, there was no sign of that dam AVM on the film. Happy? of bet! In June of this year, I will be re-tested to be absolutely sure that the monster is gone! But for now, I’m as happy as can be! After all this, the old Sharon did not come back. The new Sharon has permanently replaced her. The new me is wiser, stronger, more patient, more understanding, more appreciative of everything and everyone that crosses my path. I’m a much nicer person than I used to be. I’ve learned to pick my battles, and every one is not to be won. My AVM forced me into Therapy! I could not accept that I had this dreadful disease. In time I accepted it, but I didn’t like it. Still don’t. Hang in there. Hopefully some of your symptoms will go away, your depression will lessen and you will deal with your “new normal”. We are here for you. you are not alone by any means. I wish you all the best… Sharon D,

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God bless! You are not alone, this stuff is complicated.

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Thanks as always John_P, I’ve said it loads of times now, But always look forward to your posts and replies.

Thank you so much for your words of encouragement! Thus site is not very user friendly on my phone and so I’m just now finding all of these supportive messages. I thought nobody had replied.

Thanks again!

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Oh Sharon,

I had no idea that anyone had responded and felt disappointed and then figured out how to see my messages last night. By the time I got to your 3rd sentence I was balling. My husband reached over to me and comfortingly squeezed my arm and asked me what I was reading.

Yesterday was a hard day as the burning is now traveled up to my upper body as well. My entire right side is on fire now and I live in the desert - ugh. It’s going to be a long summer. I also have a twitch shock thing (hard to describe) that hits my left eye at random times with no warning. I have been feeling stronger with each day and better able to handle my symptoms though. With the addition eye problem acting up yesterday I went searching online for comfort and answers and read your very thoughtful, insightful and appreciated message. I don’t even know you and you took the time to write from your heart to me - I thank you from the bottom of mine!

:purple_heart: Carrie

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Zac, I thank you so much for your words of love and encouragement! It helps knowing I’m not alone. What happened to you?
Carrie

Artem,
Thanks for responding. I hope you’re feeling more hopeful today. It is such a slow process. I was thrilled just by being able to outside with my family last weekend and weed our yard. The one day at a time comment is hard to hear but it really is all I can handle. When I compare my life to what I was doing pre-surgery I get so upset, angry, frustrated, sad and hopeless so I have to compare myself to the day I woke from my surgery. I have found that helps keep me going because I do see progress.

I hope you’re ok.
:purple_heart: Carrie

Thank you Electrician for your words of encouragement!
Carrie

John_p
Thank you for responding. I really appreciate you taking the time. I hope things get easier for you whether it be physically or emotionally, whatever you’re in need of.
Carrie (feeling blue)

Dick,
Thanks for Sharing John’s entry. I have often felt the same way. I’m so grateful that my husband and children do not have to grieve and that I get to interact with them every day. It may be from bed some days but I’m here fighting for another one!
Carrie (not feeling as blue today)

I want to tell you a little about my story. On Nov. 10th 2014, I had a major brain hemorrhage occur and I should not be alive today. I had an AVM in my head and it caused this hemorrhage to happen. Any CT scan over a 5 on the brain means death or coma, I had an 8.9. I should not be here today, let alone, wanting to run another race. My story made the Fort Smith Paper and I can give you this information. Please let me know if you need anything else.

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Carrie:

I’m so happy to hear that my reply to you helped in some small way. Keep fighting and keep praying. I wish you all the best!

Sharon …