Thought I should pop in and say hello to my AVM family and let you all know I haven’t dispeared completely, life has just gotten away from me lately. I have stayed in touch with some of you on facebook and am very thankful for that and the friendships we continue to build, I have missed this place and my family here and wanted to reconnect with you all and give you an update on the turns in the road life has taken me on.
My headaches have increased the past several months, doctor isn’t sure why so they are setting up another MRI to see if my AVM has changed. I have missed allot of work and so far they have been understanding but I don’t know for how much longer. The hard part for me though is the times at home that I have gone to bed in pain instead of out to play with my son, those days hurt more than anything. My GP and I have been trying different pain meds to try and find one that helps control my headaches and still allows me to function normally but so far no luck, so we keep trying…ahh life with an inoperable AVM, fun stuff!
The biggest change in my life is that my husband and I have decided to end our marriage, we have been together for over 10 years, married only 4, he was with me thru my “pin hole” bleeds that led to my diagnosis , thru diagnosis, to attempted embolizatoin, the ups the downs, the good stuff the ugly stuff, all of it and now I will have to do it all alone. The past few months have been difficult on so many levels as we have tried to work thru everything wrong with our marriage until we finally came to the end. Now we face life apart, life apart from our son as he spends time with each of us seperatly and I am scared of raising my son alone with an inoperable AVM and what that means.
I think of you all often and miss my AVM family, just found with all the other stress in my life as much as I found this a sanctuary for so long, I had to pull away so I could figure some things out in my own life and start to get my head back on straight. I am putting the pieces together and once our house is sold and I have found a new home for my son & I and am able to start over I think it will only improve (well here’s hoping anyway
I will be back again sooner rather than later, adding some silly blogs and offering up any advice I can as well as asking for it. I do love you all and know thru my absence I have thought of you all and have missed my AVM family here and am looking to the future and all it may bring!
Sorry that you haven’t been able to find something that controls the headaches and that your marriage is coming to an end. Just one of these things is a lot for someone to handle, si it’s understandable that you have been on the site.
But I’m glad you reached out to us and will continue to do so. And hopefully, you will find a drug that helps with the headaches and will allow you to be able to spend more time with your son.
my dear friend lianne, you poked a little hole in my heart. as i wipe away my tears i struggle to find words. i am so distressed to hear your news, to hear that you have gone through this time. how strong you are, how brave you are. you give me strength.
YOU ARE NEVER ALONE. I AM WITH YOU. i am so far away and i wish i was with you.
please call on me on facebook so i know how you are doing. i will be constantly thinking of you.
you and your baby boy will be just fine, HE HAS YOU, YOU ARE ALL HE NEEDS.
stay strong, i am always praying for you both.
all my love xxxx
Savinder & Debbie there are plenty of meds that work to control my headache, the pain fades the only trouble is that I seem to have a high sensitivity to them, my boss actually came out and asked me one day if I was stoned…can you imagine the lady in charge of YOUR payrolll getting high on the job?! Laugh about it now , but at the time it wasn’t so funny, they know about my AVM and the increase in headaches so it was easy to explain my new meds, he sent me home and told me I had better go back to the doc and try a different one. They have left me stoned, sleepy, sick, with insomnia but so far not one has let me live my life as “normally” as extra strength Tylenol which unfortunatly only dulls the headachache for awhile so I have to take upwards of 10 or 12 a day…sigh I have deided to wait to try anything new until AFTER my MRI and then I will talk to my neuro and try to figure out what is going on and take it from there.
Margaret my soon to be ex & I are thankfully stil friends, he is a wonderful father and I have no doubt in my mind that although our marriage is over we will still raise our son together, and remain friendly with each other. He is a good man, just a crappy husband but to that I think I am also a crappy wife. Part of our demise can be blamed on the AVM, he wants to ignore it and thinks I make it too much of a part of my life, “you let your AVM rule your life” is what he says, to which I reply “it does not so much rule my life as it becomes a part of choices I have to make” I have never been sure how something that I am reminded of daily, if not hourly can just be “ignored” ? Oh well its over now, the messyness of the past several months is over, now on to selling the house an buying one of my own…which I am very excited about because then I get to make all the paint, floor, style decisions without comprimising! kinda exciting although still sad that we got here.
onwards & upwards they say…right?
lianne, im so glad to hear from you.
you just made my night, im so glad to hear that you still remain friends with you s.t.b ex.
i understand about the crappy husband bit, i have one of those (sometimes, lol).
it is a little disturbing about the “ignoring” thing. that would be so hard to hear.
i don’t judge, but, it is hard for others to understand what you are going through.
my husband still finds it hard to understand.
WOW, HOW EXCITING. thats the best part, decorating the new house. the first positive step to look foward to. baby steps lianne (as you already know) and everything will work out for you.
im so glad this dark period has passed for you, now the future will bring you good health and the happiness you and your son deserve. xxxxxxxx
thanks Margaret, I am looking forward, not sure I am out of the dark clouds just yet but I do DEFINATELY see the sun poking thru!
Well if it makes you feel any better I have bad headaches still and I have had treatment. I have a 5 year old that most of the time I can’t do things with. He gets me things and helps me get out of bed or off the couch. Its very hard to deal with this situation we were given. But I think some day things will get better. They will find us a pain management that actually works. Instead of us feeling like guinea pigs. I hope you start to feel better soon. But I know exactly how you feel!! Have a good weekend Bye, Andrea
sucks eh? you are right though I believe one day they will find a way to help manage my headaches and until then I will do what I can putting one foot in front of the other
Thinking of you Lianne. You’re a beautiful person inside and out and I hope you find happiness and some peace. One tiny step at a time… That is all you can do. I’m so glad your neuro is having another look at what can be done to make your headaches more managable. Thinking of you.
Hey Lianne, just reading this now…thanks for updating me on FB. I didn’t realize you were having all these troubles until yesterday…Big hugs are coming your way!
Just happened to cross this…so sorry you have to go through all this…but yo uare not alone…you know there’s great people here…I jus joined after looking at site and hae met some pretty awesome people who understand…most don’t…You will do great because of the strength you will receive from your son. I will keep you in prayer. xoxo Mare
I don’t know how I missed this post! I am so sorry to hear about your divorce, Lianne! I’m also sorry that your headaches are getting worse…mine too. I"ll be praying for you.