Just wanted say hello formally and anyone else... - Behçet's UK

Behçet's UK

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Just wanted say hello formally and anyone else in USA. If not where are you from?

Dmartin138 profile image
7 Replies

Title describes it. My name is Dean. I'm from San Diego, CA. seems medicines in Canada, UK, and other European countries therapy and treatment is a little easier to be approved for? Correct if I'm wrong...

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Dmartin138 profile image
Dmartin138
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7 Replies
devonshiredumpling profile image
devonshiredumpling

It's certainly getting a little easier Dean but mostly it depends on your medics - some are more willing to listen and prescribe than others. Also, if a drug is expensive, then we have what is known as the postcode lottery - some local authorities will bear the cost whilst others won't. There have been cases of self-funding when patients require a drug that the local authority won't pay for. But, of course, we benefit (in some ways!) from the NHS and mostly don't have to worry about cost.

By the way, hello! It's nice to know your first name - I felt awkward calling you dmartin138!

Dmartin138 profile image
Dmartin138

well yes Dean deems to work. My last name is unfortunately Martin so yes Dean Martin like the old singer. I have gotten shit my whollllee life for it. Im use to it now though. Yeah I have been trying to get state or federal help but they are denying me because I am not considered disabled. I have been battling for federal aide for about 4 years now and have a lawyer for the last 2. there is so much damage that has been done to tissues that if I would have gotten proper help 4 years ago I might have had a chance at some form of remission. So interesting how well they do it in other countries and it works. The sick people actually get help for being sick, WHAT A CONCEPT RIGHT????? They are trying with this new obamacare thing and for someone like me massive pre-existing conditions it helps but not alot of other people so they are fighting. Its only because BIG INSURANCE companies dont want to pay for us(pre-existing conditions) because they lose money there. All about profit margins, net revenue, and to be honest they would probably rather have me dead than alive because of my cost to them. Sad when we replace a human for a damn dollar sign, or EURO in your parts :).

myfabgarden profile image
myfabgarden

Hi Dean, I'm in the UK + yes we do have a great NHS system here. So sorry to read about all of the problems you have with your insurance and med system. Although I don't have the answer to your problems ~ after reading your entries you seem to be quite a great funny upbeat kinder guy ~ and obviously young.

You must keep yourself going by keeping yourself as happy and active as you can. Keep fighting for your medical rights and with an Amazing name like Dean Martin feel proud or just pretend you are the real thing for fun ~ KEEP SMILING through the pain it does help I know

take care MFG

Dmartin138 profile image
Dmartin138 in reply to myfabgarden

I think my humor is definitely different, but it is there. Sometimes dark, sometimes bland, and sometimes typical. Well for being 28 and diagnosed with all the "older" isses (osteoporosis, hypogonadism) it takes a certain toll on the mind. I have done a lot in such a short time, but I do struggle with not knowing what is going to happen. This is only because unlike the UK we are about to go through this huge crap change in healthcare OBAMACARE where yes it helps people with pre-existing conditions get insurance, but we should have had help in the first place. So in January all this is changing and the dr team i have had for the last 7 years I am no longer allowed to go to because they will only be taking specific insurances which i dont qualify for. I have to now start yet again from square one and this is all too frustrating. I just want the same care and drs and i wouldnt have the stress like i do now, not to mention midterms, trying to be a good uncle to my little nephew, and just battle each new problem. This new Neuro Behcets diagnosis obviously hasn't sat well, but I do push through as best I can and know how to. The name Dean Martin isnt all that great and especially when you have heard it since you can remember, where is Frank Sinatra, Sammy Davis, did your parents just LOVVVEEEE him..i never met my parents actually, but thanks haha. That usually puts an end to their comments, but I find it a little amusing because they change so fast to IM sorry and its liek dont be sorry I biological parents were horrible people and my life would have been worse. So im rambling. Enjoy.

myfabgarden profile image
myfabgarden

Hi Dean,

You seem to be very down at the moment after reading your post. Is there no-one family / friend or health professional that you could talk to.? I do feel for you and can understand your frustrations on the US system.

You have found the right place to rant and rave about your health and the health system no matter what country you come from and suffer from this dreadful disease. So you just keep posting on here and someone -one will always answer you even if its a few days or so later. The beauty of this forum is that you can say anything about your condition and some-one will have or has had whatever you complain about.

So Just keep on ' Rambling' away-- I Do it does help : ) MFG

Dmartin138 profile image
Dmartin138

at the moment i am quite down. Me and the family aren't close and my friends don't quite understand. Ill get through it . Just want stability in my health insurance and with my drs. I have had this team for 7 years and looks like i wont be able to keep them. I dont want to explain everything to a new team. Also getting the medications that I get now all approved all again. More frustration than being down. Im nervous about what is going to happen. Thank you.

devonshiredumpling profile image
devonshiredumpling

Not surprised you're pissed off and nervous - BD is bad enough without losing your medical team! Mind you, we have our moments. A friend of mine was told by her consultant that Anglo-Saxons don't get Behcet's and he took her diagnosis away! Okay, so it's a shit diagnosis but at least it gives you something to hang all the crap on.

Of course, this could be the door opening to a new opportunity and your new medical team might be wonderful and able to offer all sorts of solutions that your present team can't. Well, it's a thought, isn't it.

Keep smiling, keep telling us how it is for you - we do listen. I don't always answer straight away because I spend a lot of time in bed asleep - this fatigue thing is really taking its toll on me at the moment, it's worse than ever - but I do read and I do send silent hugs and good wishes.

Di

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