I haven’t been here for a long time. Really never liked this site because it was always so hard to navigate. Anyway my avm causing striff as usual. I spend most of my time in bed because my avm keeps me fatigued. Either that or my lovely diabetes that Someone wants me to have. But i guess eating right, and getting plenty of sleep, exercise, and water doesn’t matter when you have a lovely Avm. Really i told God my diabetes was enuff. You know, people don’t know how lucky they are to have good health. I wonder what that is like?? Well i guess like my religious members tell me, things will get better after death. Hmm…should i believe that? Anyway I’m getting sleepy again…bedtime for me.
Hi Alison, it is great to see you back for a visit. Sorry to hear your experience with the site is not great. I’m used to it now so find it pretty friendly, but like all new tech stuff for me, it took a fair bit of time. I am fortunate to have a 16 and 18 year old still at home who are a “wee” bit better in this tech world than me!
It sounds like you’re having some challenges for sure. I’m a big sleep, diet and exercise advocate as a starting point, but certainly a proponent of engaging with the medical world if needed. Are you able to manage your blood sugars pretty well? I know my fatigue level is something I try to manage, but really need to pay attention, but I don’t have diabetes that I believe can impact energy. I don’t know too much but I would certainly be having a conversation with my Dr. to see if there was some options.
Sorry I can’t be much help, and likely not putting anything out there you don’t already know. Take Care, John.
Hi @Alison I agree with about the site I have been on here ten years and prefer the og version and I used to build trading systems.
I can’t imagine diabetes on top of an AVM. I do have a genetic disorder called EDs and TOS sometimes I the TOS makes me bed bound and super nauseous .
I wonder if you have a vitamin deficiency.
I had a super low vit b12 and found out the most common one that starts with a c that they give us has cyanid in it and I was never getting better the M type is much better for us.
Hi Alison. I understand how you feel. I have to deal with 3 hip replacements on the same hip and, a shoulder replacement and my AVM that makes me have TIA’s. You just have to try and figure out how to manage it all. You can do it if you try hard enough. I know it is not easy.
Hello stranger! It’s good to hear from you!
I’m sorry you’re having such a tough time of it but it is good to hear from you: it has been a long time.
Several people have said they find the site difficult to use, so if you or others have things you’d like to be able to do (but can’t work out how to) please say what they are: maybe I should make some questions and answers for the FAQs area is what I’m thinking.
Very best wishes,
You remind me that I have more to offer just like you do to so many. Thank you. It is so hard to be grateful for one day when we are in pain - o still get chronic migraines via AVM and am disabled but you are doing this and you are making your mark! Thanks f coming back … I needed to hear from you. Hope u feel better soon and sending good thoughts your way.
Yes John i know most of that. My blood sugars are excellent. I exercise even when I’m half asleep. I take so many vitamins and get my 8 hrs of sleep. I drink plenty of water. My mental, emotional, etc is fine. People tell me they think its Divine punishment so now I’m trying to figure that out. I think I’ll take a couple of hours each day with my church so we can figure it. They all agree to the meeting. I hope together we can figure it out.
Tcuellar0423 I’m not exactly sure what you mean. Are you making fun? What do i have to offer???
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends and I just happened to see your post and I want to comment because I believe there’s a lot of patients who have exactly the same idea:
“More than you know” is the answer.
I have been on this neuro journey for over 25 yrs and I am yet to hear of 2 patients travelling exactly the same route. Initially, when I’d report some of the weird symptoms I was having, the dr’s would look at me like I was from another planet and make statements like “Well, that just can’t be happening…” I felt REALLY isolated. Nobody could comprehend it, least of all me. It wasn’t until I linked in with other patients that I found those ‘weird symptoms’ weren’t so weird at all, in fact some were almost universal. Without people sharing their experiences I would never have known that. Just in the simple fact of people saying ‘Yea, me too…’ was such a relief for me.
“What do i have to offer?” You too could hold that ‘key’ that someone else is searching for. You may not think so, but we all have had unique journeys, we’ve all learnt our own ways to cope and manage. There are others out there hunting for that exact ‘how to cope and manage’ type information. I was one of them.
Don’t EVER doubt the value of your own experiences, good or bad.
Merl from the Modsupport Team
I wish i could be more isolated. I am overwhelmed. I am so thankful i only have one friend. And let me ask you this. Why why do they all call it a journey? A journey is going to a place which is fun like Miami or Alaska. This neuro stuff is called sickness.
I’ve been on vitamins including b12 for close to nine years. Don’t you think they shouldve helped me by now?
Have you been busy? I think I’ve retired since we last swapped messages!
The “journey” thing I think means that getting better takes a long time and sometimes you end up going places you never meant to visit. (I don’t know if buses work the same where you live but the “local” buses here have the most tortuous habit of getting onto the main road, driving towards town, then lurching right off into a housing area and visiting the streets there before coming back to the main road and doing a similar thing both off to the left and off to the right, very very slowly getting into town . That’s definitely a “journey”).
Angela is suggesting you get the type of vitamins you’re using checked out, to make sure they are the most effective type.
It’s good to hear from you. And @tcuellar0423 is mostly saying that you’re reminding them that we all have more to offer the world than we often think: meaning much the same as Merl was saying.
Lots of love from all of us. It is very good to hear from you!
Nope not busy just busy sleeping. Why do avms make me so fatigued? And why can’t doctors do anything about it? I may have to put myself in a nursing home if my fatigue keeps up. But you want to hear something odd? I actually felt good when i had Covid not too long ago. Then after it went away i felt awful. I can’t explain that.
I do like your definition of a ‘journey’ and yes, some journeys are fun but some, like a journey to the dentist, are not what I’d consider ‘fun’. A journey has a start point and a destination and we hope/wish/pray the destination is full recovery BUT, the time it takes and the steps we need to make to get to full recovery, that’s the journey. No 2 recoveries are exactly the same nor end in exactly the same place, so although some ‘journeys’ are pleasant and relaxing, some can be torturous.
An example of this could be that you had a journey through covid, coming out the other side. For some people, they get what has been termed as ‘Long covid’ or lingering symptoms of covid. The time in which they are symptomatic is often considered their ‘Covid journey’. I’ve been taking ‘steps’ towards recovery for over 25 years and that’s certainly been a journey.
I hope this explains my use of the word ‘Journey’ within a health context.
Merl from the Modsupport Team
I like most of my journeys. I enjoy dentist, family doctors, back doctor, and so on. I hate my journeys to my neurologist. Especially this time of year when earth is at it’s ugly hottest. I hate traveling journeys.
I’ve just been surfing around and found this Message from Silverline (silverlinecrm.com) and although it is a provider document, I thought “That explains it better than me”
Merl from the Modsupport Team
QHraiser try to manage an avm in your head, which makes your face look like you’ve had a stroke. Talk about misery!
Hello @Alison are they the * Cyanocobalamin type of B12 or
the * Methylcobalamin type . The C type is the most common one in USA and even the one given in shots are the the C type which is synthetic and has cyanide in it. I took shots for years and never got better .
Once I started on the oral chewable ones
M type I started to feel better and my tests came back higher .
I buy from Seeking health.
And I love that they don’t put crappy fillers in their pills.
Angela4 i have no idea. One type makes me nauseous. But most of those nasty vitamins make me nauseous. I told my doctor this and she laughed. I no longer go to that ugly doctor. It seems like after i quit taking vitamins that i felt better. Pure bliss that whole day. But that still didn’t help my energy. Now i MUST drink at least three 8oz glasses of orange juice if i need to do chores or pay bills. My siblings tell me do my best. Ha! But after drinking the orange juice my diabetes goes up and makes me sleepy so don’t know what to do there. I know this for a fact. I hate my ugly life and don’t appreciate it at all. And it all because of my stupid Avm.