View Full Version : Hi, I'm new
05-18-2009, 05:13 PM
Hi, my name is Pamela, and I was diagnosed with SLE 15 years ago. My life hasn't been 'normal' since. :wacko: I used to be extremely active; always dancing, doing aerobics, weight lifting...I wanted to become a personal trainer. Now it takes everything I have to do house work. I've been in drug studies, which worked at first, then my body became used to the med and it quit working. Now, due to all the meds I'm on for SLE, I'm now a diabetic and have high cholesterol. I was also recently diagnosed with Pulmonary Fibrosis. My mom passed away 10 years ago due to pulmonary fibrosis. Life gets really hard to handle sometimes. I'm on disability, but was working part-time to supplement the disability payment...however, because I was sick (couldn't get out of bed) for two weeks, I got 'laid off.' Now I'm trying to figure out how I'm going to pay for my meds when I get into the medicare part-D donut hole, which is coming up pretty fast. I'm married to a wonderful, understanding and caring man, we've been married 10 years and we have two 'sons' a 1 year old Cheetoh Cat and an 11 month old Ragdoll. My mother-in-law, my sister, and my niece all have lupus as well. I don't know how I ended up marrying a man whose mother had lupus too, but that's the way it worked out, which has been kinda nice because we understand each others aches and pains and complaints. :yes:Well, I'm sure that's enough boring information about me...I look forward to meeting a lot of you. :wave:
05-18-2009, 05:30 PM
HI Pamela!!! WELCOME to your new home!!!!! Im so sorry you have to live with this disease:wacko: Im also SO SORRY for the loss of your mother:no: My heart goes out to you. Im so happy to hear of your 10yr marriage to a very supportive man, that makes a world of difference! I got myself a KEEPER too! LOL It is ironic to have married a man who UNDERSTANDS this disease. How wonderful for you!:cute: Im sure like you said that it makes a big difference in his understanding of it all! Thats why i tell people to educate themselves as much as possible and then to educate their loved ones as well.
It sounds like you are doing everything you can to deal with your situation. Thats a good thing to take charge of what you are able to! Sorry about hte things you had to change in your life. I WAS a personal trainer until things got too difficult to handle. It was hard but its what i had to do. Just another adjustment in my life right!!! I hope you are still working out as much as you can! I do, its just more toned down with the weights! I use alot less lbs now than i used to but i still use them! I feeel better to get a good walk or run in as well as weights and stretching. Its good for us all! I really hope you are taking care of yourself the best ways possible! Again, WELCOME!! Gentle hugs!!XXXXXXXXXXX
05-18-2009, 07:42 PM
welcome to our little family, that spans the earth. I am so sorry for your struggles, and for the loss of your mother. how ironic it is that your mother-in -law also suffers from lupus, the good thing is that you don't have to worry about loved ones not understanding what is happening to you.
I owned and ran my personal fitness training business for 4 years, was successful, got sick, and haven't crossed the door of a gym since. I have such difficulty with my hands, that lifting weights has become one of the things i had to give up. I can occassionally participate in water aerobics and walking, but that is about it.
welcome, hope you enjoy our little circle of friends.
05-19-2009, 01:08 AM
Hi my name is maria welcome for our wonderful family here you will also find understand people . i glad that you found a good man that understand you. i'm sorry about your mother . it was nice to me you.......
Hi Pamela, my name is gina
i wanted to welcome you to the site. the people here are very understanding and will let vent, they help with questions. i am sorry about your mom, but it sounds like you already have a good support group. keep thinking postive and smileing it helps.:yes:
05-20-2009, 07:33 PM
Welcome to our family! It is very difficult to do all that you do when you are perfectly healthy. So, I commend you for what you are doing having this disease! I am sorry to hear that you are suffering so much with Lupus and now diabetes, high cholesterol, and pulmonary fibrosis. That is a lot to have to deal with and I admire your strength!
I am so sorry to hear of the loss of your mother. I understand the that current treatment for pulmonary fibrosis is Prednisone and Methotrexate. These are also the main treatments for Lupus. Are you taking either of these medications? If so, are they the cause of your diabetes?
Adding N-acetylcysteine, a derivative of a natural amino acid, to prednisone has been shown to slow the disease in some people. And in clinical trials, the drug pirfenidone has been shown to improve lung function and prevent destruction of lung tissue. Has your doctors mentioned any of these options to you?
I hope that we can offer you support, information, comfort and knowledge. But mostly, we can offer you friendship and let you know that you are not alone! Again...welcome to our family!
Peace and Blessings
05-21-2009, 12:17 AM
Hi Pamela! Welcome to what I like to call our Lupie Group Home! I am so sorry to hear about your suffering. There are lots of wonderful people here that can relate to your pains. I hope you find comfort with us. ~ Angie
05-24-2009, 07:13 PM
I am Beckey (dog crazy) from twitter. I'm glad you have found a place here. Never worry about 'boring us with information'. I have found that this is a great place to find understanding when you can find it nowhere else. I am so sorry you are suffering so much right now. I lost my mom 12 years ago now and no what a hole that has left in my life. I am glad that you have support through your in-laws. You will find that there is support to be found here also. Welcome and gentle hugs.
05-24-2009, 09:28 PM
Sorry you lost your job...that sucks to say the least! I am so happy to hear if there is happiness that you do have people so close to you that have Lupus and truly understand everything you go through as people who don't have Lupus don't understand even when they are the most compassionate and caring people! You have come to the right place to vent and say exactly what is on your mind and to just be you without judgement!
I wish you health and remission!
05-25-2009, 08:39 AM
Welcome Pamela! So sorry to hear of your struggles, but I'm also so happy you found us. This is a wonderful place for advice, camraderie, and healing. I look forward to sharing the journey with you!
P.S. - Love the font color...purple is my very fave :)
05-25-2009, 11:59 AM
welcome and i am so sorry to read about your struggles.Hopefully we can help you along the way and have some giggles too as we all get to know each other.All the members here are lovely and very understanding.Catch up with you soon.
06-04-2009, 06:15 PM
Thanks for the warm welcome. Yes, the prednisone and methotrexate are the cause of the diabetes and high cholesterol. My doc wants me to just stay on the same dosages right now as the pulmonary fibrosis is advancing rather slowly (thankfully.):biggthumpup:
It's nice to know there are other people who understand lupus. Sometimes I feel my family is just doing what they 'have to do' to keep me going, so it's nice to hear I'm not going crazy or being a hypochondriac. :wacko:
06-04-2009, 06:23 PM
No, you are most certainly not going crazy and you are far from being a hypochondriac! Having Lupus means that every part of you body can be affected (tissues, muscles, skin, organs). So, at any given time, you could be suffering from something new and/or different!
Yes, we truly understand here and we will do all that we can to help you as much as we can!
Peace and Blessings
06-05-2009, 01:29 PM
Hello and Welcome. Sorry for your struggles. Glad you found us.