View Full Version : New Member

01-24-2010, 09:21 PM
I am a new member to wehavelupus.com, I am a bit nervous joining as I have not joined a group on the internet. My Aunt B actually told me about this link and thought it would be very helpful for me. I have many medical issues starting since I was 8yrs. old. I was diagnosed with Reflex Sympathetic Dystrophy affecting my left leg. After 8 years of in&out of hospitals, over 30 nerve blocks and a bleak diagnosis that the leg should be removed my parents strong religious beliefs decided to trust in God and move forward with a Radical Sympathectomy in which they removed part of the nerve affecting my left leg with excruciating pain. I was finally able to walk and strengthen my leg, alot of hard work. However, Arthritis and Fibromyalgia struck me down at a young age of 13. I did well for a little while but my body just weakend. SLE Lupus was always on the back burner as a possible diagnosis and as long as I have known I have been tested for Lupus and Lime disease. Left bewildered and confused and after many tests, flare ups, symptoms, Rhematologists, constantaly in and out of my doctors office, all different types of meds. When the diagnosis of SLE Lupus was finally given, I was relieved because I was really starting to feel there was no hope for me and that I must be "nuts". I was constantly in and out of the hospital, with a laundry list of events, migraines to the point of throwing up, gastro issues, excruciating pain in my joints, butterfly rash which my husband calls "Bat Face", neuropathy, Pleurisy and so forth. I believe many of you can probably relate! The flare up that have been in for months has been up and down, many downs- diagnosis of pleurisy, collapsed lung, needed O2 at night and as needed throughout the day, High doses of prednisone in which I gained 30 lbs in 3 weeks, was throwing up everynite and day, had to have an emergency endoscpopy only to find out I had 3 more ulcers on top of the 3 I had, caused by the prednisone. Was able to find a wonderful Pulmo doc, so when the next pleurisy bout comes along I will have to have IV meds.

So much more to tell, but I am very thankful for my wonderful Aunt B who told me about a friend of hers who is on this site who has lupus and I felt encouraged.

I look forward to hope that I am not alone in this, encouragement, advice, some distinctive answers and just talk. Thank you for listening ~ J[/COLOR][/FONT]

01-25-2010, 04:55 AM
Hi Pipsi,

I'm Rob, and I was diagnosed with SLE in 2004, and MS just about 1 1/2 years ago. I live just up the road from you in Maine. I certainly can relate to many of your experiences. I know what you mean about finally being relieved when you got the SLE diagnosis. Just to have an answer, and to know that we're not nuts, and that our problems have a real cause, is a big relief. It's something only people SLE can truly understand.

I think you'll find that we are an easy-going, laid back group, so there's no need to be nervous. You'll find a bunch of people here who understand how you feel, and have been through many of the same experiences. Welcome to our group, and make yourself at home!


01-25-2010, 06:27 AM
Hi Pipsi and welcome to WHL. So glad your auntie gave you the gift of love and led you to the Forum.

We're a melting pot of greta people who have at least one thing in common-SLE. Many of us, like you, have other medical issues as well. I have Sjogren's Syndrome, Gastroparesis, Raynaud's, Excessive Daytine Sleepiness, GERD and the doctor's believe, autonomic neuropathy.

In the 13 months since my SLE diagnosis, whl has become my lifeline. I can't imagine facing all of this by myself and am very thankful to 9onrad and Saysusie for bringing us all together.

Welcome aboard!

01-25-2010, 06:51 AM
Hi Pipsi,

I want to welcome you to this awesome forum as well.
I agree with bonus mom, your aunt gave you the greatest gift, telling you about WHL.
To all of us lupies here, this forum is our lifesaver. Here we find people who understand, what we are going through.
BTW, my name is Debbie, I have Lupus, RA, Fibro, Sjogrens and Raynauds.
If you have any questions, just ask, someone is always here to answer them.


01-25-2010, 08:13 AM
Hi Pipsi and welcome you really have had a tough time and it is wonderfull that you have a family that supports you. You will find a lot of loving, caring and informative people here hope you keep in touch. Love and prayers Bonita

01-25-2010, 08:41 AM
hi pipsi,

thank goodness for your Aunt B. I also had never participated in an online forum, and was hesitant when i joined. However, i can not begin to tell you how much this family of members have helped me. They encircled me with knowledge and compassion, and walked with me through the scary realization of my disease. I also have fibromyalgie along with SLE and the many other illnesses that attach themselves to lupus. You have really been through a lot of medical nightmares, and i hope that the drs. can start finding you some relief.

Welcome to our family, we will always be here for you.

01-25-2010, 12:52 PM
Hi Pipsi;
Welcome to our family. You have already met some of our members and seen how compassionate and understanding this family is. I am so sorry to hear how you have been suffering for so many years. Most of us can truly relate to our elation at, finally, having a diagnosis and knowing that we were not losing our minds. On the one hand, we are happy to know that there is a name for what has been plaguing us for so many years; on the other hand, we are unhappy to know that we have a life long disease.
I am sorry to hear that the Prednisone has been causing so many side effects. Has your doctor thought about giving you some other medications so that you can reduce your Prednisone dosage? It seems, lately, that so many people are on high doses of Prednisone and that their doctors have not even discussed using steroid-sparing medications with them. This mystifies me!!
At any rate, I hope that your doctor will discuss this possibility with you and that all of your doctors will work together to get you on a treatment regimine that will finally give you some relief fron symptoms and adverse side effects.
In the meantime, I am so happy that you are here. You will find that there is always someone available to answer your questions, give you information, or just be here to listen! Again...welcome to our family.

Peace and Blessings

01-25-2010, 11:01 PM
Hi Pipsi,
I want to add my welcome here, too. I'm sorry that it has been such a rough time for you, but I hope that it becomes easier for you now that you have found WHL.
Do ask your doc about steroid sparing drugs. I can't take steroids at all, so my docs have had to come up with other things.
Good luck and keep in touch with us.

01-26-2010, 05:00 AM
You have been through an incredible amount. Just saying your a very strong person.

01-26-2010, 08:11 AM
Pipsi -
I have already replied to your other post - but wanted to join in on the official welcome wagon!! I can tell you that the people on this site - from the time BEFORE I was officially Dxd until now - with many breaks inbetween, have been an ENORMOUS part of my dealing with this disease. The folks here are LOADED with knowledge, and even if there is "no answer" to some of the crazy things we deal with, they are full of genuine love, compassion and concern.
I am so so happy you took Aunties suggestion! BTW - She is one of my favorite ppl in the world!!
Love and prayers

01-26-2010, 04:43 PM
Welcome. I'm happy that you've joined us, and I'm 100% positive that you'll find whatever answers you'll need. I'm sure you'll make lots of friends here.

01-27-2010, 05:14 PM
Welcome to the group. You'll find a lot of great people on this site. I have found comfort and lots of good info.


We must Live Life to the best of our ability.