PDA

View Full Version : Allow me to introduce myself



Thunda
05-23-2011, 11:15 PM
This forum thing is new to me but I wanted to connect with more people who have lupus so what better way to reach out.

I found out I had SLE in December of 2007 after going 9 months without knowing what was happening to my body. I am thankful and fortunate that none of my major organs have been affected. Since I started my meds I've been doing good. I was even down to just 200mg of plaquenil a day. As I've come to realize this disease is very unpredictable and have been dealing with flare ups since February. So I've been a little up and down emotionally and just wanted to reach out to others who are dealing with this like I am.

steve.b
05-24-2011, 12:08 AM
hi, and welcome.
please feel free to browes through the posts.
it will begood to get to know you.

Peridot20_Gem
05-24-2011, 02:31 AM
Hi Thunda,

Welcome to our lovely family at WHL and as you can see there's so many threads for you to venture through and learn such alot through SLE.

It's nice to hear that plaquenil as helped you in such a larger way and the disease is unpredictable like you said, from morning to the next you never know how your going to feel.

When ever you want to vent or feel down just get on the forum as there's always someone on line for you.

((Hugs Terri)) xxx

tgal
05-24-2011, 07:28 AM
This forum thing is new to me but I wanted to connect with more people who have lupus so what better way to reach out.

I found out I had SLE in December of 2007 after going 9 months without knowing what was happening to my body. I am thankful and fortunate that none of my major organs have been affected. Since I started my meds I've been doing good. I was even down to just 200mg of plaquenil a day. As I've come to realize this disease is very unpredictable and have been dealing with flare ups since February. So I've been a little up and down emotionally and just wanted to reach out to others who are dealing with this like I am.

Hi and welcome to WHL! I am so sorry that you are flaring again. I think almost everyone here understands the ups and downs that come from this disease.You will find that these members are some of the most wonderful people that you will ever meet. Please make youself at home. Look around through the old posts or start new ones if you want. I look forward to getting to know you!

Peridot20_Gem
05-25-2011, 04:46 PM
Hello Thunda,

How are you feeling now?? and i hope tomorrow is more a less pain free day for you, keep we updated please. xxx

~LUVMYFLOWERS~
05-26-2011, 04:54 AM
Hi Thunda, I would like to also say welcome to WHL! And so glad to have you here!
So sorry to hear your still in a flair, Hope you feel better soon.
Hug's to You!!!!!!!! ~Diane~

Peridot20_Gem
06-01-2011, 01:45 AM
Hello Thunda,

I hope today is a better day for you and please keep we updated on how you are?

((Hugs Terri)) xxx

lovedbyHim
06-01-2011, 02:50 AM
Hello Thunder I am new to this forum too. Was diagnoses in 2005 I think. It's been a long haul. I still have bought or grief over losing who I once was. I am learning to accept and love who I am nope. It's a journey I never imagined but thank God we are not alone. So glad to meet you.

tgal
06-01-2011, 07:22 AM
Hello Thunder I am new to this forum too. Was diagnoses in 2005 I think. It's been a long haul. I still have bought or grief over losing who I once was. I am learning to accept and love who I am nope. It's a journey I never imagined but thank God we are not alone. So glad to meet you.

That is a very insightful comment. We all go through a period of grief when we find we have this disease. I actually believe we all go through the phases of grief just like if someone close to us died. We must allow ourselves to go through the 7 stages of grief or we can't get to a place of learning to live with the disease. I don't mean live as in breathe I mean live as enjoying your time on this planet. The 7 stages are:

1. shock or disbelief
2. denial
3. bargaining
4.guilt,
5.anger,
6.depression,
7.acceptance/hope.

Linda From Australia
06-01-2011, 07:44 AM
AND these 7 stages change all the time. Once you achieve acceptance, sometimes you can go through the whole stage again, starting with shock and disbelief. Just put on your seat belt and make sure you don't fall out of the roller coaster, because it sure hurts when you hit the ground with a massive splat.

luv1only63
06-04-2011, 09:06 PM
Like you I am new to this site. Among all the issues, my family thinks I am just malingering and lazy. The fatigue is severe and the pain unbearable. Are there any groups for family members to attend to be educated about this disease? I am in Raleigh, NC

Peridot20_Gem
06-05-2011, 02:23 AM
Janice,

I'm sorry with how you family are thinking but with Lupus suffers because a majority of us look well on the outside we're classed as

"FIT AND HEALTHY" by other's and there's been so many threads and discussions on the site about this, nobody knows only those who suffer.

We all suffer with fatigue and the pain besides foggyness of the brain which drives alot of us mad, so don't take in what your family say, tell them to read about it first before accusing.

Thunda
06-05-2011, 05:49 AM
Hello all,

Thank you for the warm welcome.

I recently returned from out of the country which is why I've been MIA since I started the thread. Unfortunately I'm still flaring up but I'm doing better. My energy is coming back lilttle by little. I cut my hair again because it started falling and thinning out. The rash on my face is fading as well. I've also been having issues with my hemoglobin levels. To help this issue my hematologist put me on this shot called Aranesp. I had my first injection about 3 weeks ago before I left for vacation. I know this is suppose to help me and it's something I need but for some reason it scares the hell out of me. The day I went i broke down in the office. I mean the water works were flowing. It was so overwhelming. I go back again on Wednesday for another shot. The doctor said I have to continue the shot until my levels improve. He said I'm at an 8 and he wants me at a 12.

That's pretty much the major stuff I think. I've gotten so use to the little everyday things that I really don't pay it any mind. I'm quite sure everyone knows where I'm
coming from.

I will keep you all posted. Thanks again for welcome. 

Linda From Australia
06-05-2011, 06:01 AM
I am so glad you came back to us. Tell us about your vacation?

Thunda
06-06-2011, 07:56 AM
My vacation was enjoyable and much needed.

The first half of my vacation I spent in Jacksonville, Florida. I went out there for a family reunion. It was only a weekend thing but I stayed out there for week. It was pretty cool getting to see the family. There was a meet and greet on Friday, the main event BBQ on Saturday and a brunch on Sunday. On Sunday I went to the Jacksonville Zoo with my partner, parents, niece and nephew plus a couple of cousins. There zoo was great and the kids as well as the adults loved it. They had a train to ride around on, a merry go round and even a pool play area for the kids. We were in the zoo for like 5 hours. Needless to say you guys know I was worn out, lol. After a couple hours rest we all met back up for dinner @ Red Lobster since it was the last night everyone was going to be together. With the official activities over my cousin Cynthia who is native to Jacksonville kept us occupied for the rest of time there. We did some shopping, hung out at a bar, hung out at her house with her hubby and son, and even a little beach time.

For the latter half of my vaca I was in Cancun, Mexico. My partner as well as some friends convinced me that I needed to have some much needed party time. Cancun was great. Granted I had to pile on the sunblock, have on the sun hat and the shades I loved it. I actually kept up with them pretty good too. I only had one night when I stayed behind while they went to dinner because my body told me no. We went to Wet N Wild water park, checked out some clubs, the beach was right outside our condo and of course restaurants. Senor Frogs and Carlos and Charlies were our favorites while we were there. If any one goes to Cancun try them the staff makes the experience so fun.

That pretty much sums it all up. I'm feeling a little fatigue from the excitement of it all since I've been back but its not bad. I thought I would be out for the count for a day or two when I got back. I get recuperate since my next big adventure isn't until August when I go on a cruise with the family.

Peridot20_Gem
06-07-2011, 06:48 AM
Hi Tunda,

Like Linda thanks for coming back and letting we know how your keeping and a good vacation and break does you good sometimes, so i am pleased for you in that way and i do hope you get your hemoglobin levels back to a steady 12.

((Hugs Terri)) xxx