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Grime
03-03-2009, 07:13 PM
I have run into major problems with the VA on a different health issue and not wanting the aggravation in my life I am not pursuing it. Just asking question I got my tail chewed out, door slammed in my face and one VA service rep said come back in a year.

I only have VA for medical no insurance.

My question is has anyone with Lupus gotten anywhere with VA disability. I just don't know where else to ask.

Take care all
David

mountaindreamer
03-03-2009, 07:55 PM
wow Grime,

i am so sorry that you are having to deal with the VA..../. you don't need extra aggravations. It is such a shame that we can not give our vets better care.

Hopefully Rob will be along and can give some guidance.

take care, hope you sleep good tonight.

phyllis

Rastagirl
03-03-2009, 11:17 PM
Hi David...

That's absolutely appalling....If really pisses me off that our Veterans are treated that way....for asking a question? That guy (or gal) should be ashamed of themself.

I'm really sorry you have to endure that. NOBODY deserves to be treated that way, especially our honored VETERANS!

I'm sorry I'm not able to help with your question, but I do want to say THANK YOU VERY MUCH for your service to your Country. I truly appreciate it! If I worked at the VA in any capacity, I would treat every single Veteran with respect and appreciation. They deserve nothing less.

Most Fondly,

Lori :)

rob
03-04-2009, 06:16 AM
Hi David,

Although I am a veteran, I am on full Social Security Disability. Since I live in Maine, I use "Mainecare", basically it's free healthcare for anyone meeting the criteria, and it's a pretty good system, so I'm good to go for disability benefits, and healthcare. I've never pursued any VA benefits because I feel my needs are being met with the SSI and MC, so I don't have any experience dealing with the VA personally.

I have a sister who is the admin at the Maine State Veterans Hospital here, and she's done alot to reform and improve the VA Hospital system here in our state. I would be happy to ask her for advice on your behalf if you want. I think it's way out of line to treat a Vietnam Veteran such as yourself with rudeness like you are some raw recruit back in basic training. Those VA officials are there to work for you, not the other way around. I'll be happy to help you with any info or advice I can.

Rob

P.S. How's the weather down your way? Been out sailing?

Grime
03-04-2009, 07:45 AM
Thank you ladies for your concerns.

Rob if it would not be to much trouble and sometime when your sister is around, you asked her about Lupus and VA disability that would be great. I did email McCain about it. No reply as of yet. Its not about the money. Sure I could really use it. Nothing can make up for the last 40 years. It about not being just a number in the system. Each VA hospital or clinic have different policies. Up in Kerrville, years ago, I walked in not feeling good and got a full physical. It took me, in Victoria, 2 months just to get an appointment then 6 months to see a dermatologist. Now I'm waiting on getting a remotoligy (sp) appointment. Might be another 6 months before I get one. All they have me on is Desonide for my face/hands and Triamcinolone Acetonide for my body.

We had 40 mph winds Saturday and they have been to high to go out since. Blew all the water out of the marina. Really waiting until I get the bimini built before we take Miss Froggy out again. Should have all the parts and finished by Saturday evening. Install Sunday. We did have plans to go out yesterday on a 41' Tatran. Not enough water to get out of the slip. She was sitting on her bottom. I did spend a couple of hours visiting with the owner. He is very concerned about my Lupus. So I don't mind not taking of my sunglasses. I have always felt it rude to talk to someone with them on. Its hard not walking the beach with Lisa and the dogs looking for shells. I sit under a cover and watch them. Better than nothing.

Have a great day,
David

Oluwa
03-04-2009, 10:04 AM
Hi Grime I am a Vet also...activity duty, not during war time...

I would like to say welcome to this safe, understanding informative place in space..hugs...

Do you have discoid Lupus? Is that the reason for the two steroid creams? For the malar rash? I was just on a 6 month round of steroid creams..undiagnosed rashes. I self diagnosed as Dermatitis Herpeteformis

Be really careful with those steroid creams..times they can do more damage by burning the skin. Dry it out, turning it into leather...red flaky and dry...

Even though the ones you have been prescribed are low mild ones, one step higher than the OTC ones... continual use can cause side effects just as well as the oral dosing of steroids. Affecting the adrenal gland....

Do you use alot? All over and for how long?

Regarding your experience at the VA Hospital have you contacted the Patient Advocacy Program....

From... http://www1.va.gov/health/index.asp

A Patient Advocacy Program is in place at each VA health care facility to ensure that your concerns are addressed in a convenient and timely manner.

Patient Advocates are highly trained professionals who help resolve your concerns about any aspect of your health care experience, particularly those concerns that cannot be resolved at the point of care. Each Patient Advocate is empowered to ensure that you receive the maximum benefits you are entitled to by law.

Patient Advocates act as VA representatives to listen to any questions, problems, or special needs you may have. They will refer your concerns to the appropriate Medical Center staff for resolution and act on your behalf to assist in explaining your point of view. Patient Advocates can be reached through the nursing or support staff in any clinical area.

Again welcome to wehavelupus....

Keep looking for your wellness....don't give up.

Hugs..be well,
Love,
Oluwa

Grime
03-04-2009, 10:42 AM
Hi Oluwa,
Another vet told me about the PA other wise I would have never known about them. It took me 5 phone calls the to PA to get the dermatology appointment. The doctor I saw was very caring and did the required test. She did call me to let me know the diagnoses. I didn't get much other information out of her other than use the creams twice daily and she would see me in 2 months. I have had to learn about Lupus online. I use a small amount on my hands twice daily same with the body cream. All she really told me was to use sunscreen and big hat when out in the sun. She only has 2 others that she is treating for Lupus.

Some days the cream seem to not be working other days it looks like things are starting to clear up.

I'm not to worried about my skin turning to leather my hands have always looked like leather. I am concerned about the side effects of the steroids tho.

My son and I have talked about me giving him full guardianship that way I can go to any doctor as a military dependent. He is career army. Off to school in Kentucky right now.

Oluwa, Thanks you for servicing.

Take care,
David

mountaindreamer
03-04-2009, 12:32 PM
hi david,

so sorry about your situation, but so thankful for all of the incredible advice you have been given here. I just want to say congratulations on your relationship with your son....guardianship assignment is such a difficult place to go, but thank goodness that you have this relationship that allows you to consider this option. The more advocates we have, the easier this fight is.

phyllis

Grime
03-04-2009, 12:50 PM
Hi Phyllis,
Its a very long story. He was a gift from God to me. We have a relationship that most fathers and sons only dream about. I do have other children they are nothing like Ty. He is one of a kind.

I can not say enough how thankful I am for this forum. As I read through the different threads I realize how lucky I am to be of my age and just now getting Lupus. Many time I have to turn away from the computer because my heart aches for all those with Lupus. There is nothing I can do to help them. Sorry. Gotta go.

David

TobyJug
03-04-2009, 04:34 PM
hey I am in hte UK so can't give u advice but thought I just give u the heads up..

Same rubbish here can't get nothing at the moment....

good luck mate...

Oluwa
03-04-2009, 05:59 PM
David...

I smile with gladness you have wonderful support, your son...to have such a special relationship, to be friends.

Is it an emollient cream, not a lotion that you use twice during the day while using the topicals steroid. Aheavier cream keeps the moisture in as the steroid creams are so drying. Will help in the healing if it trying to heal...

What did they say your rash was? Contact dermatitis?

I was in USN..Air Traffic Controller...years back.

Enjoy the night...
Be well..
Love,
Oluwa

Grime
03-04-2009, 06:33 PM
Hi Oluwa,
She never did say. The heavy cream I use on my body and the other on my hands. This is all she told me to do with them. Nothing about using a combination between the two. It is so hard to get answers because they are so pushed for time. Its also hard to ask question when you don't know what to ask. I'm a dummy on this. When I see her again Lisa is going with me. She can ask the question that I always seem to forget to ask. We are writing them down.

My friend here that I sail with is a retired ATC. I spent 7 years in helicopters. Small world.

Have a great evening.
David

Oluwa
03-04-2009, 09:25 PM
Hi David....

I am glad Lisa is going with you...it is always a good idea to bring someone with you...and a check off each on your list of questions and all your symptoms as you speak of them....

If they request blood work , ask what they are for, when the results will be in...

Bring past results in ....

Are you on Plaquenil or any drugs for your Lupus symptoms?

I had a rash for several months. I was prescribed the same topical as you, then they prescribed stronger and stronger than the super potent steroid because it wasn't resolving.

Thinking it was just more rashes, evolving...because of course the dermO should now what he is doing, right. He looks at skin all day. Treats skin all day...

What was happening with the rash, was I was also getting a chemical burn from the topical steroids. It was chapped and raw like....and wasn't healing the real rash. Just created another...

I stopped the topical steroid late December and my skin is almost healed. Twp plus months to repair the damage what the cream had done, and it wasn't treating the rash. My skin feel like a sheet of paper, not supple.

It wouldn't be so awful if it was just a spot, or a small area...but my whole chest, back...legs...neck, stomach. It doesn't feel like I am touching my skin it has a dead sensation to it. Unreal like Barbie doll skin...

Rash...I diagnosed myself with dermatitis herpetiformis...a reaction to gluten. Looked like it, acted like...resolved like it when I stopped eating gluten. The rash was from neck to ankle...deep hole sores.

But anyway...sometimes the damage from the steroid cream can be mistaken for a type of rash....

I put the steroid cream on in the morning and at dinner time. I used the emollient at lunch time and just before going to bed...

Be well...night.
Love,
Oluwa

Grime
03-05-2009, 06:30 AM
Good morning Oluwa,

She said something about ANA work and something else I didn't understand, over the phone, for my blood work. She also did two biopies one on my back and one on my neck. I'm not on any meds at this time. Waiting on a rehmy appointment.

They never give you the results. You are lucky if they even tell you the results. I did find out that my white cell count is low. My BP is 102/58 which doesn't seem to cause them to worry. It does worry me. I have lost 7lbs since Christmas. No change in my diet. I stand 6' and average 160 now down to 140.

It is hard to point out the different pain areas. I have always thought the pains comes from the type of life I've lived. I live my working life as a cowboy. I rode everyday working cattle. My summers were spent riding out of a cow camp up in the mountains in Montana. Tough life but a wonderful one. I'm the guy in the green shirt.

http://www.missfroggy.pocwebdesign.com/_RefFiles/005.jpg

Gotta go for now. Jake is tell me he wants out. He's my old cowdog. He's 15 now and like me retired.

Have a great day,
David

Angel Oliver
03-05-2009, 06:51 AM
Oh how cool is that...wow.Oh n i think you meant green shirt lol :) Made me chuckle :)

Grime
03-05-2009, 07:12 AM
Angel,
Here's one just for you. When you can't sleep put this picture in your mind and turn on your water sounds. Relax and dream.

http://www.missfroggy.pocwebdesign.com/_RefFiles/408.jpg

Angel I've been covered in that to. Major typo on my part. It has been corrected.

Angel Oliver
03-05-2009, 07:14 AM
Oh Wow.Oh if i had the energy a bit of white water rafting there :) Oh if only i lived near there.......so relaxing....thanks :)

xx

Angel Oliver
03-05-2009, 11:28 AM
Hi David,

Made me laugh :) Where is that lovely place?

Angel.x

Grime
03-05-2009, 12:04 PM
I couldn't find the one I use to get my drinking water out of. This one is from up in Glacier National Park.

Lisa loves the sound of running water. If she could have it we would have a house with a creek running through the living room.

Rest good tonight,
David

Oluwa
03-05-2009, 12:14 PM
Hi David..Happy afternoon...

Lovely pictures...causes me to yearn for the Pacific Northwest. Reminds me of the Skykomish River...near the Cascades.

I've had several skin biopsy punch-outs...allergy panel tests. They didn't yield a diagnose. They just told me what it wasn't. My rash stumped them.

Have you've been tested for Celiac's Disease..weight loss, rashes.....pain fatigue are symptoms too...

Here are some sites...maybe you might find your rash there. Warning some photographs are graphic due to the type of skin condition ...rash and not nudity...
http://www.dermnet.com/menuCasePhotos.html
http://www.lib.uiowa.edu/hardin/md/gallery2.html
http://www.dermnet.com/

It's Thursday..enjoy the day...
Love,
Oluwa

mountaindreamer
03-05-2009, 01:07 PM
hi david,

thanks for sharing the beautiful picture. I wish i could have that river running through my bedroom....then we would sleep.

phyllis

Angel Oliver
03-05-2009, 01:09 PM
Hi Oluwa,

Hope you are ok today :)

David,
Yes im with Lisa.....so calming.Yet i carnt listen to a creek it makes me trickle if you get me drift lol :)

When i win the lotto.....im going to live in a barn conversion type of place with trees and at the bottom of my garden....water of some description so i can sit n watch the moon on the water.But.....if i hear any strange noises.....im sorry but would have to run quickly back indoors :)

Angel.x

Grime
03-05-2009, 01:13 PM
Hi Oluwa,
Thanks for the link. I did look through some of them. I did see a couple that look similar to what I have. My face and hands are the butterfly. My chest and back are bumps without a head. I did have some that came up with a head. Right now my nose is starting to look like I'm a teen age boy again. The pimples come on about every 3 weeks and take a couple of weeks to heal. My ears are getting better but still feel like they are on fire. They burn if I rub them or pull a sweater over my head. I ware a beard and only shave my neck now about every two weeks. Don't care for the feeling after I shave.

I do have a sleep problems but that has been going on for 40 years. I do have parts that don't work anymore. Lisa is very understanding. Somethings I have written off to my age but I think I'll bring that up to them.

I don't know what the VA has tested me far. They don't tell you and I don't remember unless its written down. I guess I need to force the issue. It will be 2 months before I see the dermatologists again.

I'll be glad when it Saturday. Then I'll know if we can go sailing Sunday.

Have fun,
David

PS, Let me explain the Have fun. When I type this or tell someone have fun it is a small prayer asking to grant you all your dreams.

Grime
03-05-2009, 01:35 PM
Angel,
You make me laugh. Run back inside if you hear a strange noise. Those strange noises are just the little creatures coming over the sit with you to enjoy the moon and your company.

One time I had to ride out at the same time each morning. One morning as the sun was coming up a coyote came up to me about 15m off. He stayed there and followed me for hours. I would talk to him. This went on every morning for a couple of weeks. He would be waiting for me each morning. Guess he knew I need the company. I had to pull out of the camp for a week and when I went back he was no longer there. I still to this day think about him.

I'll see if I have a picture of a place you describe. Most of my photos are on film. I didn't get a digital camera until just before I left the ranch.

Have fun,
David

Angel Oliver
03-05-2009, 01:46 PM
Oh what a fab story. did you feed him? I know theyre not supposed to be friendly, but i would have threw something to him? Ah how nice, yes and i believe he was keeping you company too....a lovely thought. :)
Sorry to read about your butterfly rash and hope it gets better soon and the creams n stuff help you.As i read it you mentioned beards.....i laughed as i touched my face.....i think i have one n im a girl :) A hairy faced girl. :) Id never noticed before.
There is a place you know, not sure which country, maybe Maldives where in your living room and bedroom, the floor is see through and the sea is there....you can see it.But i suppose only the rich n famous can afford that type of holiday.But i liked the photo...thanks for taking the time to show me for my dreams .

Angel.xx

P.s Yes if the creatures are those i can see thats fine, but i heard noises n could'nt see what the noise was, id run :)

Grime
03-05-2009, 01:46 PM
Hi Phyllis,
Sorry I missed your post. It makes me feel good to brighten up someones day.

Have fun,
David

Grime
03-05-2009, 01:59 PM
No I didn't feed him. I didn't want to get him to friendly with humans. Ranchers shoot them. I never did. I let the clean up my calving pasture and they never did bother a calf.

I don't guess I'll ever get the chance to see a house with the sea under the look though floor. Never been rich and only once was I mistakenly thought of someone famous. That's another story.

Lisa uses a product call Nair upper lip cream. She has the same problem. From all the meds she has taken over the years for her asthma.

David

Angel Oliver
03-05-2009, 02:05 PM
Ah yes i see....oh they shoot them....oh no. But glad they left the calf's alone. Oh does she....well im not a hairy monster or anything, but i think i had the same reaction recently with steriods i was on for my asthma. Im on a steriod inhaler too. Thanks for letting me know that cream name :)

Grime
03-05-2009, 02:22 PM
Angle I hate to hear that you have asthma on top of everything else.

We are from Texas. Texas is not a good place for her asthma. I would hate to tell you have many time we have moved because of her asthma. Here on the Texas coast she has been doing really good. It is a given that if she has one attack we are back to Montana where is she is fine. I'll sell our boat and be gone.

Angel Oliver
03-05-2009, 02:30 PM
Please dont worry about my asthma. I have it under control now for 8 weeks and im doing very good...new meds combo, they got me breathing fine. Oh i know it can be very scary but i am glad Lisa is doing good on the coast.And what a gem she has in you, so lovely to read how much you care for each other :) xxxx

Grime
03-05-2009, 02:38 PM
Ok I wont worry about your asthma. I just wont tell you when I do.

Lisa was a gift from God to me. Long story. It will be 28 years next month that she has had to put up with me.

Angel Oliver
03-05-2009, 02:40 PM
Ah wow....fab :) You doing anything nice to celebrate? Can i ask...what asthma meds is Lisa on? :)

Grime
03-05-2009, 03:13 PM
At the moment she is not on anything. We have albuteral nebulizer (sp on both). Her prescription ran out for singular and I can't get her to go to the doctor. As long as her breathing is good I don't push the issue. I do worry because I have almost lost her more than once.

What I have done is figure out everything that cause her to have an asthma attack. One of the major ones is cats and she loves cats. We don't have any anymore. The live oak tree at different times of the year will set off an attack. It could be something small in the house that will trigger an attack. Stress is another one. This one I worry about now that I have Lupus. I encourage her to do the things she like. She took up quilting a couple of months ago with some lady friends that we only see once a year. Now she quilts for everyone in the family. She makes stuff and give it away. This makes her happy and I think it is helping with the asthma. Right now she has a job, part time, that she loves and I think that this is really helping her.

Don't get me wrong. I'm no doctor. I just try to figure out what is causing the problem. I guess it comes from working with livestock and they can't talk to you. You have to figure out what is happening to them on your own and how to treat them.

We will be with friends having shrimp, crabs and bar-b-q ribs. It will be a fun evening. Crazy bunch a sailors.

Angel Oliver
03-05-2009, 04:46 PM
Oh what a lovely time you will have.Mmmmm mouths watering now :)

Lisa seems to have the same allergies as me. Does she carry a Ventolin with her at all times? If not id recommend it. I am so glad she has it under control now.I also found out im allergic to cats....i have 2.The Doctor asked me how old they were.Soosie is 16 and my baby Oliver is 13. Doctor told me not to replace them when they go, as my allergy is bad.(I stroke all the cats i see...i love em). Then i was told im allergic to dogs.....well i had one Daisy who died a week ago.Doc said do not replace her.....noone could ever replace my Daisy :) Pollen...dust..housemite and a little dodgy on birds. (She says after being chased by a peacock lol ). Yes im on the Singulair n a few others. I am so glad she has found something she enjoys doing.I bet she is popular now with friends :) Yes that will so ease the stress. I hope she continues to keep well and you too :) xx

Grime
03-05-2009, 05:23 PM
She has been on Ventolin. Sorry to hear about Daisy. Lisa lost her dog Dixie last March to a brain tumor. She was one of a kind. The only dog I would trust to take food from my lips. Beleive it or not she was a 110lb Rotti. Dixie was Lisa companion since I worked all the time.

Angel Oliver
03-05-2009, 05:29 PM
Oh Thanks. Wow thats one big dog :) Yes, to be honest found the last week kind of hard. Everyone here have helped me through it. Felt allot of sorrow for her today....i could see her everywhere and well just miss her terribly. Yes they become such good companions and im sorry for the loss of Lisa's dog....its so sad. Even when you know they go before you do usually.....it still never prepares you for the emptiness. Like all the good people here said...the more i think of her....i keep her alive.Its a good thought.....just not at that point yet, so ive got to accept it.....then the healing will start. :) Did Lisa get another dog?

Grime
03-05-2009, 06:54 PM
No she didn't get another dog. That special one can never be replaced.