[Demora]

Hello, I'm new to the site, but not new to Lupus. My mom was diagnosed when I was about 5 years old and now I'm 35. Her Lupus has really gotten terrible over the last 7 years or so. Her kidneys have failed, she can no longer walk, has had small stroke, suffers from Sjeogrin's and Raynhaud's. She was once diagnosed with Scleromyxaderma, but no other doctor has confirmed that diagnosis. Her skin is hard to describe - it's hard to the touch, but it rips very easily and peels. She gets sores on her hands and arms for no apparent reason.

She was always so strong and determined that I never imagined she would be so sick.

Tomorrow, I'm renting a wheelchair van so I can take her out for her 62nd birthday.

We are lucky in that it seems to have missed me, and I thank God for that. I wouldn't be able to care for her the way I do if I was sick too.

 

[sjink]

Hi Demora

Welcome to the lupus site. I am fairly new here too. It is very supportive here and you get lots of help and info.

I am sorry your mum is so ill at the moment. Lupus sure can be hard on families so it is lovely that you care for her and are able to take her out. My gran had skin just as you described... no-one knew what it was but I suspect she had lupus too. I hope you both enjoy your day out for her birthday.

Sara
x

 

[LolaLola]

DearDemora, Wishing you both a good day out. Welcome here. Your poor Mum has had it hard.
x Lola

 

[Mrs M]

Hi Demora and welcome to this fantastic site.

Everyone here is so helpful and supportive as I'm sure you'll find out.
Hope your mum's doing well and that you both enjoy your day out.

Sending birthday wishes to your mum. x

Mrs M

 

[Demora]

Thank you all. We had a blast out on the town! Mom was smiles all day and I spoiled her rotten! But you know what is so frustrating - people who have no regard for handicapped. I was backing up so I could park in a van accessable spot and some lady darted in there right behind me. She put a placard in the window of her car and she and her daughter got out and both walked very fast into the store. There was NOTHING wrong with either of them. People do this all the time, it happened the last time I took my mom out too - it's people using family members placards. I had to unload my mom at the door and then go find a parking spot.

I had a person run over the ramp that was sticking out of the side of the van while I was unhooking the safety straps from my mom's chair (he was lucky I my mom's chair was in between him and I...I probably would've pulled him out the window of his mini van and started whoopin up on him!!!)

People have stepped over her legs like she's not even there, walked in front of her, darted in the door in front of us, let the door close on us....it's very frustrating. I really feel for people who have to put up with this every day of their lives. (I've almost gotten my butt kicked a couple of times for yelling at people for being so inconsiderate)

 

[sjink]

Hi I am glad you both had a good day despite people being less than kind at times. It is really sad that people think only of themselves so much. This happens to old people too, they become invisible because people don't like to look at them I think and be reminded that it will be them one day.

I don't look disabled and use a disabled parking badge and I am sure people wonder about me because I can walk into a shop and back again usually if I park near to the entrance. The fact that I might need to sit down as soon as I get into the store would not be noticed by most people. Without knowing I can park near somewhere I doubt I would go out as much because of the fatigue and breathlessness but no-one can see either of those things. Sometimes I feel I should limp a bit which is a bit daft.

Anyway main thing is your mum got out and about on her birthday, what a lovely daughter you are.
Sara

 

[Demora]

Hi Sara, I know there are issues where people may not "look" disabled...but I guess generally I don't see those people jumping out of a van and practically running into a place. I try very hard not to judge (there was a long period of time when my mom didn't "look" disabled as well), but that lady made me so mad. And even though there are a number parking places, there are only a few that are van accessible. She didn't need the room to put a wheelchair ramp down safely.

I turn into a pit bull when it comes to my mom...LOL.

 

[sjink]

Hi Demora, I do understand, I have cussed in our local supermarket that has over 20 disabled spaces and often more than half of them with cars with no disabled badges on display. I completely lost it with a taxi driver who took a space I was hoping for. I asked him if he was disabled and the cheeky so and so said "No are you". I said I was and he said "I'll move then", but he should not have been there in the first place. I couldn't believe I had lost my temper in a public place, I never used to be like that.

I always try to leave the disabled spaces that are wider or closer to stores free for wheelchair users, but then it takes a disabled person or family of a disabled person to understand. I am a lot more sympathetic to elderly people since I got lupus joint pain. I think we just have to, sadly, accept that some people are less able to think of others than they might be.

Your mum is lucky to have her own personal pit bull )

 

[pennylp]

:love2:Hi Demora,

A very big :welcome: to the site first of all....We have a wonderful support group ... I am so sorry for you and your mom.... I looked after my mother for the last two years of her life... She was never diagnosed with lupus... but I think she had it... She was an amputee, so she was in a wheelchair.... And I too had to do what you are doing.... I used to take her for dialisis three times a week to the city... and our off days were running all over God's creation, visiting, shopping, playing... Anything to make her happy.... And I hope I did...
You are a blessing to your mother.... I hope you take a little time for yourself once in a while....As taking care of someone who is ill can take a toll on you.... I didn't have any backup.. And I am afraid I payed a high price, my health...but I would do it all over again if I had to....
People can be so rude....And the other day was unfortunate.. but the next time you take her out.. you might find ten people that ask you if they can help... And there are more nice people out there than rude... I have experienced both.... And the good ones make up for those rude people... I hope to chat with you again .... TAke care of yourself... And please send my love to your mom...

:love2: love Penny