Lupus


#1

Want to talk to someone with lupus. It is difficult for my family to believe that I am not the dynamo I used to be…I am tired.


#2

Hi Boomer - I went from high energy to none in a hurry with Lupus. It has depleted my energy and left me despressed. However the depression is nothing compared to the anger I feel. I’m mad at my body because I cannot function like before. I think the anger is better because I keep fighting back. Good luck.


#3

Nanny, I find anger is a waste of emotion, and it brings on a bout of depression. Instead I concentrate on things I can do.

Another thing I do is NEVER listen to the news. I don’t care because it is all stressful…not good for lupus patients…
especially before going to sleep.

Just for those that have this disease: Lupus doesn’t kill - the area it affects does…for instance, desanitize your hands all of the time. We are prone to pneumonia.

NEVER eat from an opened salad bar.

Wear a mask if traveling on an airplane, and pull the shades DOWN.

One must wear make-up to cover your skin from the sun or any weather.

If anyone I am supposed to go out to dinner with, and they have a cold, I either take an antibiotic or I don’t go. One dinner is not worth a week of being sick.

Do NOT take the flu or pneumonia shot.


#4

Good Morning Nanny

Sorry it has taken me so long to answer back.
I live in Texas and have been in Charleston, So. Carolina for over a week. What a beautiful place…so full of history.
Anyway…I so understand your anger. I was that way at first…but my family helped me get over it because I had a chip on my shoulder and that doesn’t make anything better. I try to use that energy in a more positive way. However, if that works for you and keeps you going…then so be it. This desease is different in everyone and the doctors sometimes don’t acknowledge your symptoms. I had that trouble in California, but since I’ve been in Texas, I have found the most caring doctors. Keep looking for one that will support you.
If I can help you in any way, please just ask. I am suffering this disease alone, except for my best friend…it’s that same ole story…but you look so good.
Let’s talk
Boomer


#5

Good Morning Nanny

Sorry it has taken me so long to answer back.
I live in Texas and have been in Charleston, So. Carolina for over a week. What a beautiful place…so full of history.
Anyway…I so understand your anger. I was that way at first…but my family helped me get over it because I had a chip on my shoulder and that doesn’t make anything better. I try to use that energy in a more positive way. However, if that works for you and keeps you going…then so be it. This desease is different in everyone and the doctors sometimes don’t acknowledge your symptoms. I had that trouble in California, but since I’ve been in Texas, I have found the most caring doctors. Keep looking for one that will support you.
If I can help you in any way, please just ask. I am suffering this disease alone, except for my best friend…it’s that same ole story…but you look so good.
Let’s talk
Boomer


#6

I’m glad you spent time in Charleston. It’s a beautiful place. I live about three hours away. The anger keeps me motivated. I find it’s better for me than telling myself I can’t do things. It’s getting so hot here. Therefore I’m in a lot of pain and have turned my air on at home and in my car. I find if I get hot, I can feel myself swelling and then the pain sets in. Then I become a person who is not nice. I go through this every spring. Also my glands swell each spring and I get sick for a few days. The worst spring was when we went to Israel. I caught something over there that really knocked me off my feet. I have to be more careful now when I travel. It’s wonderful you are past your anger and can move forward. You’re right that Lupus is different for everyone and everyone has their own coping skills.


#7

Nanny

You’re right, we all have our way of coping. I definitely have meltdowns…I just stay away from everyone when that happens. I have so many different symptoms. Right now my glands are swollen and I have a sore throat. I have sores in my mouth. I am on plaquinil, meds for depression, valium for anxiety attacks and sleep and ritalin to pay attention…just to name a few.
Right now I am not coping at all with the fatigue. I am so tired I could cry…yet I have to step up and get out there…no choice. I NEVER feel rested and can’t get up in the morning. I have to set my alarm early…just to warm up and wake up…everything hurts…I am never out of pain…some days are worse than others.
I am so happy to have found this forum. I feel bad that so many of you (us) are sick, but it’s comforting to know that I am not alone. If there is anything I can help you with, just let me know
Boomer


#8

I think having someone to talk to is the greatest thing we can do to help one another. Most people think we’re nuts. I’m on Plaquenil, Cymbalta, Xanax, Dyzide, Lipitor, and Topol, plus other meds for pain. I’m always tired too and always hurt. People say, “take an aspirin, that’s what I do” and I want to scream. I set my alarm for 5 am in order to get up and going. A friend of mine who is healthy told me to stop taking Xanax because I could become addicted. I just didn’t answer. I’m fully aware of the dangers of the drugs I take and I’m fully aware that I can take them or stay in bed. I prefer to take the medicine and function. People who don’t know about Lupus can say the most maddening things, unintentionally of course. We’ll keep talking if that’s okay with you. I sometimes need to vent.


#9

Good Morning Nanny…

Yes, it does help to vent. Y’know I feel a little better today…because I know now I have a support group. I did go to a Lupus meeting once…I stayed about 10 minutes…went to the bathroom and cried my eyes out. I don’t know what brought on that reaction ( it was a long time ago) but I never
went back. I saw someone else on the forum say the same thing.
Have a great day
Boomer


#10

Good morning!  I’m glad you’re better today. I don’t do well with live support groups either.  I have 44 days of school left.  For the next two weeks, I’m giving standardized testing on computers running two labs at once.  The weeks of standardized tests always cause a flare due to the stress and extra work.  Also the school has not turned on the air conditioning. I run 4 labs, with two testing, the other two are packed with teachers who of course have problems with something. Well it’s close to spring break, so I’ll live.  It will just hurt to live.  I’m due for my shots of pred. again, so that will help.   Have a great weekend.


#11

Nanny,

 

If you're in so much pain, please ask your doctor if he can give you a morphine patch to at least get you through the day.  It comes in different doses.  When one is in pain, it doesn't work like it would on someone who is NOT in pain.


#12

Boomer, I know what you mean, i was a high energy person always doing
several things at the same time. I could run circles around the teens that
worked in the store where i helped managed. Now it takes me a week to
get things done in my home. Walking does help me,several months back
i would go from the bed to the sofa and didn’t care if i even got dressed
thats how much pain i was in. (NEVER want to go back to that). It took my
husband and son awhile to realize how sick i was. I don’t work in the store
anymore too much standing all day then i would swell up like a baloon. Also too much stress. I work out of my home now and pace myself.


#13

Hello, I am unavailable to read your message at this time.


#14

nanny, like you i would rather take my medication to function. People don’t realize the pain were in and the tiredness. It took me awhile to get used
to all the changes i had to make, which wasn’t easy.