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busdrivr
07-14-2011, 03:45 PM
As much as I hate to admit it, I have Lupus. It has disrupted my life so badly. Such a horrible disease. Just looking for support from others.

Peridot20_Gem
07-14-2011, 04:28 PM
Hello busdrivr,

Welcome to our lovely large family of WHL and so lovely to have you with us.

There's loads of threads to venture through and learn more of the conditions linked with it and if you need to vent come on anytime as there's always someone who will answer in due course.

Lupus is an hard Disease to handle at times, i myself i find it hard and very flustrating and the water works are often going but concerning support you'll definitely get that from us.

It would help us if you don't mind to help more...if you could tell we more of your history and what you've got linked with Lupus.

Hugs Terry xxx

tgal
07-14-2011, 04:55 PM
I wanted to take a moment to say hello and welcome you to WHL! While I am so very sorry you have this disease I am really glad that you found us. This is a wonderful place full of fabulous people who will support you in whatever ways that you need as you move down this new path. Feel free to make yourself at home. There are so many threads full of fabulous information as well as places you can posts questions or comments of your own.

I look forward to having you with with us and I look forward to getting to know you

lovedbyHim
07-14-2011, 06:16 PM
Hello busdriver, welcome to a place where you can vent and feel validated.

steve.b
07-14-2011, 08:03 PM
hi,and welcome.
you say it has disrupted your life...

do you still drive buses?

busdrivr
07-15-2011, 03:49 AM
No, no more driving busses for me. I no longer can work. When I wake during the night I cannot feel my feet and they are so weak, don't know if they will hold me up. I have a tendency to fall quite frequently. My rheumatologist says I have had this disease for about 4 years. Painful joints, fever, rash, you name it, I think I have experienced a little of everything. Tried the Plaquenil with no results, now on the methotrexate but had to decrease the dosage because it was making me very sick. What next, I wonder. My children are devastated by this also, knowing I have always been the type of person that never slows down. Unfortunately, Lupus has slowed me way down. I don't think my husband understands how dreadful this pain really is. Thanks for being here for me.

steve.b
07-15-2011, 04:01 AM
i still drive, short distances.....
but also decided to surender my bus license.

i have had to slow down "just a little".
my brain decides to pause every so often.
no more working for me either.

~LUVMYFLOWERS~
07-15-2011, 04:04 AM
Hello Busdriver, Im so sorry you have Lupus, But im so glad you've joined WHL!
And would like to welcome you also. I also havent been able to drive for 2 years now, have the numb feet & toes, balance issues, also running into thing's and trip a lot among a
long list of other symptoms. There are lot's of wonderful careing people here also ton's of info.
~Diane~

Peridot20_Gem
07-15-2011, 05:13 AM
No, no more driving busses for me. I no longer can work. When I wake during the night I cannot feel my feet and they are so weak, don't know if they will hold me up. I have a tendency to fall quite frequently. My rheumatologist says I have had this disease for about 4 years. Painful joints, fever, rash, you name it, I think I have experienced a little of everything. Tried the Plaquenil with no results, now on the methotrexate but had to decrease the dosage because it was making me very sick. What next, I wonder. My children are devastated by this also, knowing I have always been the type of person that never slows down. Unfortunately, Lupus has slowed me way down. I don't think my husband understands how dreadful this pain really is. Thanks for being here for me.Hi busdrivr,

Sorry to hear your works had to stop...besides your rheumo saying you have Lupus have any of your bloods said it you have any A1 Diseases or Autoimmune diseases to help you with the situation and so you know what your suffering with besides.

We all go through the painful joints, fever and rashes which are known as a bad flare.

I was on plaquenil for 12wks which disturbed my breathing badly but now back on it but taking it at night and hardly any problems...my dermo wants me on methotrexate with Dapsone tablets for my skin but my rheumo is being abit stubborn at the moment.

Yes Lupus does slow we all down and you mainly have to do things in a slower pace to how you feel but it's lovely to hear your hubby understands.

Terry xxx

busdrivr
07-16-2011, 07:57 AM
Yeah, I have that awful stumbling thing. Why is that? I sometimes feel so clumsy. I, like you, running into things and off balance. I recently have had some dizziness. I never know what else is in store as a new symptom.

busdrivr
07-16-2011, 07:59 AM
I was told I had Lupus and RA and he did mention an autoimmune disease.????

busdrivr
07-16-2011, 08:02 AM
I just returned from a campout with our childrens ministry and am sooooo wiped out. Although I didn't have much to do but I think the stress of it wore me down.

GeoKasher
07-16-2011, 08:48 AM
Just wanted to welcome you. I just joined myself so we'll learn about this together!

tgal
07-16-2011, 08:53 AM
I was told I had Lupus and RA and he did mention an autoimmune disease.????

Lupus and RA are bother Auto Immune diseases. Once you have one it is not uncommon to have several. Sorry that you are in this situation but I am glad that you are here

lovedbyHim
07-16-2011, 08:54 AM
Hi busdriver, when I was first diagnosed and had a lot of inflation, I would stumble a lot. My legs would also just buckle and I would fall down. Sometimes I had trouble getting back up. It was awful. Are you on any nsaids like mobic? The nsaids helped me a lot. Sometimes when the inflammation hits my brain I also get dizzy and stumble. I get weepy and sleep a lot during that time.

I'm sorry you can't work anymore. I am currently struggling with driving in my job due to UV light making me get too sleepy at the wheel. It's a challenge to awaken each day, unsure as to how you will feel.

As far as AI diseases, Steve says there are 63 of them. Lupus is one, RA is another. I have several, many of us do.

tgal
07-16-2011, 08:57 AM
I just returned from a campout with our childrens ministry and am sooooo wiped out. Although I didn't have much to do but I think the stress of it wore me down.

Where you in the sun? If so that may be what is causing you to feel so bad. Yes, stress makes us feel bad but a majority of us become photosensitive. It is almost like an allergy to the sun and florescent lighting. You might want to start paying attention to how you feel after being outside. I can't go into stores or outside without sunscreen and, if outside for any amount of time, hat, long pants sunglasses etc. Even in the car I have to use sunscreen. It may not be an issue with you but maybe take a look at it

busdrivr
07-16-2011, 11:55 AM
I am right with you on the symptoms. My knees want to buckle also. Have you been bothered with burning in your mouth, especially when you eat salt?

lovedbyHim
07-16-2011, 11:59 AM
Yes I get ulcers along the gum line and cheeks. Many of us do. I get a sour stomach and nose sores usually about the same time but not always.

Peridot20_Gem
07-18-2011, 10:38 AM
I am right with you on the symptoms. My knees want to buckle also. Have you been bothered with burning in your mouth, especially when you eat salt?Hi busdrivr,

The buckling of the knees will come from your RA and Lupus to how strong it's affecting your system...my hubby as often said i walk like i'm drunk and go from side to side, many of us members have it but i don't have burning in the mouth but i do take loads of salt intake i'm terrible for the stuff.

I hope your abit better today and keep we updated please.

Terry xxxx

Elo
07-18-2011, 11:47 AM
Hi busdriver (: Welcome to the forum. I'm sorry it took me so long to reply to your post. I'm still recovering from being out and busy on friday. Oh how this disease effects us. I'm sure you know what I mean - i've never before taken so long to "recover" from just going out and being with people.
This is a great forum for support (: Feel free to join in or start a rant post. The people here are so wonderful and supportive and truly understand what you're going through.
Welcome again (:

busdrivr
07-19-2011, 03:53 PM
Yes, a lot of burning. I attributed it to my thyroid. The rheumatologist said the lupus was attacking my thyroid making my levels go up and down.

busdrivr
07-19-2011, 03:54 PM
Yup, I know how you feel about going out. I go to church twice on Sunday and on Monday I cannot do a thing.

busdrivr
07-19-2011, 03:56 PM
Yes, I've been having dizzy spells a lot lately. Are u bothered with this?

Peridot20_Gem
07-19-2011, 04:21 PM
Yes, a lot of burning. I attributed it to my thyroid. The rheumatologist said the lupus was attacking my thyroid making my levels go up and down.Hello busdrivr,

I suffer with my thyroid and half the time it's underactive and when it goes hypo christ the weight i loose is unbelieveable.

I have dizzy spellslike yourself and passed out through them...they can be bothering at times but i do hope you've been abit better today.

Terry xxx

Elo
07-19-2011, 07:11 PM
Yes, I've been having dizzy spells a lot lately. Are u bothered with this?

Personally, I am. When I get fatigued or it's hot out, it's almost like my brain checks out and the room starts to spin. A lot of times I feel like i'm going to faint. Luckily, i've always been able to sit down or lean against someone when that happens, but it's quite scary to me.

luv1only63
07-21-2011, 03:51 AM
As much as I hate to admit it, I have Lupus. It has disrupted my life so badly. Such a horrible disease. Just looking for support from others.

I am in Raleigh, NC and agree with you. I had to quit my job and at that time did not have a true diagnosis. I am looking for a local support chapter in NC.

Peridot20_Gem
07-24-2011, 03:46 AM
Hello busdrivr,

How are you feeling?? and i hope your day is a less pain free one....please keep we updated on how your feeling.

Terry xxx

busdrivr
07-24-2011, 07:10 AM
There is a local one here in Winston Salem,NC that I have joined. They are going to have a walk August 2nd. If you'd like, I can send you info on it.

busdrivr
07-24-2011, 07:13 AM
Yes, It's Sunday and I'm trying for church today but my ankle and knee joints feel somewhat like rubber and hurt badly today. Just wondering how much longer I'll be able to walk??? Still taking the methotrexate but today is taking a toll on me. I think I need to rest,maybe?

lovedbyHim
07-24-2011, 07:49 AM
Yes, It's Sunday and I'm trying for church today but my ankle and knee joints feel somewhat like rubber and hurt badly today. Just wondering how much longer I'll be able to walk??? Still taking the methotrexate but today is taking a toll on me. I think I need to rest,maybe?

Hi busdriver, I planned on church today and after my bath and getting dressed I was too worn out. Sleep is vital to make it for the long haul. Sometimes I just have to give some things up. Hey I got a bath! Lol

luv1only63
07-31-2011, 12:06 AM
As much as I hate to admit it, I have Lupus. It has disrupted my life so badly. Such a horrible disease. Just looking for support from others.

Hello fellow Tarheller. I am in Raleigh, NC and like you lupus has disrupted my life. i had to stop work, unable to do much in the house, in constant pain, depressed, etc. i do try to keep a positive attitude and see the glass as half full. i want to locate a lupus chapther in NC. Let's stay in touch to encourage each other. This site is very helpful to check it often. Consider me a buddy.