Hey Joshua - so glad you’re through with your embos and ‘all patched up’ now. Hope the pain is subsiding by now and that your road of recovery is a short one.
Tori
thanks for comment 
Stergio said:
Hey,
My name is Chris and I'm currently going through a similar situation. I'm very sorry to hear about your situation 16 but I was wondering how long ha
tania goddard said:joshua, i know how u feel, my AVM is in my leg but still people dont belive the pain and problems i get. my husband and kids do but my employers are not so considerate, i work for the police force in the uk as i was told the best thing to do is keep my leg mobile or end up in a wheelchair. when i did so i lost benifits ect as they cant understand, they say i cant be in pain, my leg cant give way la la la, i now want my leg amputated its so bad. keep your chin up mate. the AVM group is so helpfull.
Joshua,
How is your pulmonary hypertension going? What meds do they have you on for it? My husband had very highflow AVM's in his left arm and left lung which caused PH. He was on a drug for it that was extremely expensive however it did the trick and his PH has calmed down enough so that he no longer is on medication for it and his pulmonaligist says his pressures look the best they have in years. That being said he is currently in the hospital with liver failure that they believe is caused from the years of congestive heart failure and pulmonary hypertension that has put pressure on his spleen and liver. While I myself don't have the AVM's or constant illness I do understand where you are coming from. I have lost multiple jobs due to using so much sick time taking my husband to the hospital. You are correct that they don't understand...you look normal and no one understands the pain that is going on inside because they can't see or feel it. I wish I had a helpful answer for you on how to deal with these people but unfortunately I don't. Over time as he has developed more and more additional health issues due to the AVM's spreading throughout his body people have begun to understand. My husband and I have tried to always be completely upfront and open about all of his medical issues in hopes that it will help someone else in the future. After all this is a rare condition yet someone is going through it and if we can use his illness as an opportunity to educate others on the complications from AVM's. Then maybe it will help someone else know what to ask the doctors or what to watch for. Doctors are still clueless most of the time and don't know what they can do to help but they are better then they were 7 years ago when we started this battle of complication after complication. I hope you have found a good support system. Let me know if I can be of help to you at all.
God Bless,
Crissy
Hi Joshua - my situation's a little different, but give props to this site and the people involved with this site.
I very much want to go back to work - but I have read of different needs that I should be aware of - because of this site, e.g. issues of loss of ss benefits, lack of energy to work full time or even part time, etc.
I feel for your struggles and believe that it will get better.
Crissy,
This has been a very long year and a half . . . I almost forgot about this post ;)
So -- IT has been confirmed that I have over 100 PAVMs (most of them are so small that there is nothing we can do but watch). I've had many more embos since last time I was one this site -- but over all, I am doing well with this AVM stuff!
Pulmonary Hypertension . . . I am on IV Remodulin, Adcirca, Letairis, and Warfarin. I was on the transplant list for a while -- but there has been enough response to the medications that I have been taken off. PH has really taken center stage, and I often forget about all the AVMs ;)
I am returning to work next week -- I'm quite nervous . . . hoping that I have what it takes to work full time. My medications are a little over $40,000 per month - so I absolutely need health insurance!
Take care -- I hope things start working out for you and your husband,
Joshua
Julie . . .
Returning to work has been an issue for me as well. Before my health problems I worked as a correctional officer in a county jail. My doctor didn't want me to return to that kind of work after discovering the AVMs. Now I have a permanent central line for a PH medication, and couldn't go back there even if I wanted to.
Just last week the county offered me an administrative position -- I start next week. I really hope I can keep up - otherwise I will loose my insurance.
Take care and good luck!
I wish you the best with your new job, Joshua! You will be in my thoughts and prayers!
Like your story, I read so many on here the same, as well as my own - at the end of the day we cant control what others think about us or our condition, they can call us liars, give us a hard time at work, but we know whats going on with our life and we have to do the best for it.... in my life it was a great realisation really about how many blood sucking useless friends i actually had in my life, at when a time i needed them they couldnt be there, so that was the first tick for me on my list... see ya later people that dont matter!....even if you have no friends, at least your life is true, and with the employer well if you are in a position find an employer who does understand, a fresh start, or go through the channels of hr and seek out stress leave which in australia (not sure about us) pays for you to have time off work due to your condition, that way all the info goes straight to the top and your boss has no say in it. (again seek out info dependant on your workplace as i know countries, and workplaces are very different)
I dont know about anyone else, but i have found in my avm journey i am tired of proving my avm and health to people and now i just dont worry myself with pettiness and instead concentrate on the things in life that really matter, and that is my life and my health. ....i hope you find your journey too through this pettiness xxx
Well said Jaszi... While you posted this back in 2010, both your posting and all the responses made me think. While I've had some facial palsy and hated it, there was a positive result in all of this in that it looks like something happened. (Basically looks like I had a stroke.) While very few of us have any outward appearances of this terrible AVM thing it has only proved to have other question more. "you look so normal"... what is normal??? Yes I read you're reply too Shalon and you have the right attitude.
And as far as "friends"' well some of the replies made address this and I found it to be true as well. Friends show their "true colors" when something bad happens to you. And if they aren't suuportive or even understanding, good riddance. You'll make other friends...and this site is a great start. Way to say it Jessica. It's a long and hard journey and circumstances for each are different but their are commonalities too. The good news is that you're not alone and you have almost 4000 people on your side on this site. :) Best of luck to you always. :)
JOshua, you need to stay strong and positive. all will turn out well.
You have many people praying and sending you positive thoughts.
Stay well my friend.
memo
Hey Joshua,
I would check with your pulmonoligist about Tracleer. It is insanely expensive and we did have to fight the insurance and social security a little bit to get it paid for but it made a world of difference. It got my husband off oxygen almost immediately and his pulmonary pressures got better at every exam. Also, have you gone to any of the PH support groups? My husband went to a few of them and it really helped him. He was able to network with the best doctors in this field. Be warned you will probably be the youngest person at the meeting as usually PH is normally an old person condition. Good luck with your new job!
Crissy
Crissy . . .
Tracleer and Lataris are both Endothelin Receptor Antagonists and work in the same manner. To be honest, I can't remember why I ended up going with Lataris?? I;ll have to look into that again ;)
I actually lead the Nebraska/Western Iowa PH support group -- and yes, I am the youngest person by far!
Thanks again, and take care,
Joshua