the vison problem is back

[kbNtn]

About a month ago I had posted a problem with my right eye and had discussed the issue with my ID doctor .....ruled out cmv and after a month of a lot of pain and wearing an eye patchand avoiding bright light the problem sorta eased off. My id doctor doesn't have a clue what to do can't get in with any eye doctor .....at the end of my rope with all of it and just getting frustrated at every turn....I live in a very small town and have to travel half an hour away to another county just to go to the doctor ....help ........please ??

[Ann]

kb, you can't get in with any eye doctor? There's got to be one somewhere in traveling distance from where you live. Why hasn't your ID doctor referred you to one? It sounds like you need to be more proactive - possibly by getting on your doctor's case about a referral.

Concerning travel distance to see your doctor - isn't your health worth it? I live in a small town too - on a small island in the middle of the Irish Sea.  I leave the house at 5:45 am and get to my hiv clinic at 8:30 - 9:00am, depending on weather and traffic. I start heading home at 5:45 pm and get there around 9pm.

My travel involves (one way) two taxi rides of 20+ minutes each and a 25 - 30 minute flight. That's a total of about an hour and a half in taxis and the same in a plane - with a total faffing about traveling time (remember airport security etc) of at least six hours each time I see my hiv doc. Don't even get me started on days when there are flight delays and the occasional last-minute cancellation. I usually go every three months, but I've been over four times since May and I'll be going back in early October (because of starting meds).

Now don't you feel a little better about traveling for a half-hour?

Mind you, on the other hand, from my front door to my GP's office it's only a three minute walk as he's just around the corner. I don't think it's evened out over the past eleven years though.

[tednlou2]

Ann, wow!  Now that is a commute.  I promise to not complain when I get stuck in a little traffic on the way to mine, which is less than 12 miles away.  Do you get really great air fares?  Air taxi kind of fees?  But, I am sure those can add up.

[Ann]

Ted, fortunately the NHS pays for most of the travel - the airfare and the two taxi rides in Liverpool.

They (the Manx government) get bulk deals with one airline (Flybe, aka FlyMAYbe) and one taxi service. The passenger list on the red-eye to Liverpool most weekday mornings is usually 50-75% "patient transfers" - people who are going to various hospitals in Merseyside to see specialists that aren't available on the Rock. A fair amount of them are cardio, cancer and eye surgery patients. There's usually a few babies/young children going to Alder Hey Children's hospital as well.

I save up a few quid to have breakfast at the hospital, then lunch in town and some shopping in the afternoon, and for the taxis on the Rock (I don't have a car to get to the airport). Things in general are much cheaper in Liverpool so I'm actually saving money, but I can only buy a few things that fit in a small backpack. It's not difficult to save up when I'm only over every three months, but it gets to be a stretch when I go more often.

[Billy B]

Good God Ann,
I bitch because I have to travel 100 miles one way on an interstate to see my IDS. I did not realize that you lived on an small island in the middle of the sea. It sounds like Heaven to me!

Now back to the OP,

You have got to see an eye doctor ASAP and find out what is going on with your eye. It could be minor but it also could be something that could cost you your sight.
Billy

[kbNtn]

Believe me I'm not complaining about the distance to the doc ....but on top of they eye problem I get a phone call yesterday docs rescheduling my appointments which is no big deal but in the duration of the call I find out that my doc hasn't been documenting my visits which throws me into another delima ........I don't know how to talk to her ....she speaks limited english and the choice of seeing another ID doctor isn't very promising .....as the choice isn't mine to make according to my case worker ......I don't know what the hell to do or how to handle any of it

[Ann]

Hey KB, I didn't think you were necessarily complaining (I know having to travel any distance over a few miles for healthcare can be a challenge), I just wanted to give you another perspective.

When I was first diagnosed I had a doctor whose English was very difficult to understand, so I get that too. Anytime I politely asked him to repeat something he said, he said it again but faster and louder in an angry tone, as if that would help. I changed doctors. I've had other doctors whose first language was not English, but when I asked them politely to repeat what they said, they always took great care to make themselves understood. It was just this doctor (and one in ER on one occasion unrelated to hiv) who refused to make the effort. 

Regarding you changing doctors.... With what type of organisation is this case worker who tells you that the decision of what doctor you see isn't your choice to make? Can you tell us more about what area of the country you live and what sort of support organisations you have been accessing? Are you in touch with your local ASO?

When you say "my doc hasn't been documenting my visits", do you mean she isn't writing up your case notes? Can you clarify what you mean by this? If she's not documenting anything about your visits, this is extremely poor practice and complaints should be made.

I'm really sorry you have fallen into a situation where you're having such problems. If you're finding it difficult to advocate for yourself, you'll need to find someone who can help you. If your current case worker is of no use, either try to get a new one (again, are you in touch with your local ASO?) or find a friend or family member who can help you with some practical and moral support.

I understand you're newly diagnosed and in the beginning it can be daunting even for those of us lucky enough to have wonderful doctors and support systems, but you're going to be living with hiv for the rest of your life and you will need to either stand up for yourself or find someone who can help you do that.

You can start by letting us know a few more details. There may be someone here who is living in your general area who can help. We don't need your specific address, just your general area. Doing so will not compromise your anonymity.

Hang in there KB. You're not alone so please, reach out.

[kbNtn]

Hey ...thanks for your concern ....and possibly a light at the end of the tunnel so to speak ....I don't have a clue what ASO even is ....I live in east tennessee inthe united states ....if you could email me on my gmail this site is a bit hard for me to navigate and I would like to talk to you more you seem to have a lot of knowlegd and insight and I need that sooo

[Billy B]

Hey ...thanks for your concern ....and possibly a light at the end of the tunnel so to speak ....I don't have a clue what ASO even is ....I live in east Tennessee inthe united states ....if you could email me on my gmail this site is a bit hard for me to navigate and I would like to talk to you more you seem to have a lot of knowlegd and insight and I need that sooo much kennethbritton40@gmail.com

Hello Kenneth,
ASO is Aids Service Organization. I would say that if you call your local health department that they could give you the name of the one that serves your area.

Also, you should probably remove your name with email address from your post. I think that an Internet search of your name could turn up this post.
Billy

[Billy B]

Try this: http://www.tnaids.org/
Look under the resource tab.
Billy