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AVM Survivors Network

Difficulty coping with symptoms


#1

I am almost to my one year mark from having AVM removed leaving me with paraplegia from the waist down. I have made alot of improvements, but I am suffering so much right now due to a gallbladder attack combined with a UTI. I haven’t eaten much in the last 3 days and I am feeling so down and sad. I’m so afraid. I don’t know what I’m even looking for right now. Hope. The pins and needles seem to be worse these last few days then they have been and that makes me so nervous. Please say a prayer for me.


#2

Praying for you Joanne! It is very difficult when your body doesn’t work! I lost my gall bladder and appendix a number of years ago. I figured might as well take out all the parts that don’t work right? :smile: But in all seriousness, you want to consult your doctor but the only side effects I’ve experienced are needing to have a bathroom nearby after breakfast, lunch, and dinner. It’s great for weight loss too! :slight_smile: Blessings as you continue!


#3

Hi Joanne,

I am so sorry to hear that you are facing so many health issues all at once. I unfortunately dont have much useful experience to share with you. However please know we are all sending prayers and our positive energy and thoughts to you. I will be thinking of you and hoping things go on the way up soon.

As with all changing symptoms regarding your recent change in pins and needles - please notify your consultant who treated your AVM regarding these changes. As much as we here can do all we can to emotionally support you and share relatable experiences. We are not medical professionals - whenever you have a health concern it is important that you contact your consultant or relevent health professional. Then, let us take care of the emotional support side of things and share any experiences/insights that could help.

I look forward to hearing back from you regarding how you get on. I hope your consultant finds a reason and solution for these changes. I also hope that your pain with your gallbladder attack combined with UTI ceases soon. I am moody and emotional with a UTI alone so I cant imagine coping with that combination! :frowning:

Please always reach out to us whenever you need. You may feel alone right now in your journey but we are all here with you. You are never truely alone. Please also if you haven’t already, do reach out to loved ones for support. If it is available to you seeking help to get tools to cope emotionally with all these changes you’ve faced with a therapist. Cognitive Behavioural Therapy really did help me personally, I was doubtful at first but really glad I went for it.

Best of wishes to you Joanne,

Corrine


#4

Hi Joanne:

I will keep you in my Prayers. You have been through so much that it is not surprising that you are down and depressed. Know that being down and depressed are two things your doctor’s can address and make better. We’ve all been in that boat and somehow found a way out, even if only temporarily. P&P Joanne. (Prayer & Patience). Please hang in there with us. We are here to support and encourage you. God Bless you.

Sharon D…


#5

I can’t thank you all enough for your kind words, shared experience, and prayers. I have an appointment with my doctor on Monday where I’m sure we will discuss removing my gallbladder :frowning: I have also contacted a mental health professional who is going to schedule something with me next week.
I am feeling better today than the last few, but I’m still have only been able to eat a small bit of banana. Even chicken broth isn’t setting well.
I’ll work on my P&P :slight_smile:
Joanne


#6

Dear Joanne,

first: We cannot compare the sideeffects of the AVM. Every person is different. Had so many sideeffects like deep vein thrombosis (bloodthinner forever), pulmonary embolism, hernia caused of the many angios and bowel/bladder. Brown Sequard Syndrom. At last pigmentdispersionssyndrom in the eyes with risk of glaucom. No year since 2012 was normal. Every year new things.

But: Everytime I “survive” this things, I feel better, stronger. Happier. Really. Sounds silly perhaps. But I found peace deep in my heart and soul.

And I am not a friend of “send prayer” posts on facebook. Thats so easy said and easy written. I am christian too. But I know god is here every minute, second, hour year. More power you have with “thanking” prayers. Doesnt matter what happens to you, you are never alone, never without god. He is with you in the darkest moments. And sure you find so many things for the “thank you god” prayer. This kind of prayer is the most effective. Wish you all the best! Sending no prayers, cause god is with you all the time. Till the end of the time. Your friend Michael.


#7

Thank you Michael. I am feeling so much better and it’s funny that you say you feel stronger after a setback and I felt that this time. I was lying in bed thinking about how this illness has made me feel like i’ve progressed no recessed.
God is all around me, I know. My faith is what has sustained me since I was in the 4th grade and being able to reach out to my friends (like you) makes me feel like I am not alone in my condition. You all understand the fear, the uncertainty, and I appreciate that!
My doctor says I have an ulcer but I still have to have the gallbladder scan. I was finally able to eat after 3 full days of only being able to eat a banana or applesauce.
I also don’t believe in putting things on Facebook so thank you for using this forum and messenger to talk to me :slight_smile:
Your friend, Joanne


#8

Hi Joanne

Just to let you know that I’m thinking and praying for you.

I’m a paraplegic too for over 30 yrs now. At the beginning what kept me going on good days was to book a few days away from home, it does the power of good for you. I hope you have a good team of carers, doctors and family and friends caring for you. will be thinking of you.

Dize x x


#9

U r in my prayer list and I will pray for u daily


#10

That’s a strange diet Joanne, banana gives me indigestion but love stewed apple especially if it’s topped with crumble!

I hope yr latest condition improves n this site is a great place to meet people with avm’s. I’m always getting asked if I had an accident n when I say no, an AVM paralysed me, I was sat in a restaurant a few yrs ago n someone at another table bellowed “You had an accident” n I answered back “None of yr
b…y business!”

Take care.

Dize
Xx


#11

I have been praying for u this last week. Hope u r better.

PHILIPPIANS 4:13