New one here

mommychristy · Not So Newbie Joined: 30 Aug 2004 Posts: 8 Location: PA

Hi everyone. My name is Christy and I was just diagnosed with SLE a month ago. This looks like the perfect board to find others like myself. I feel kind of alone in all of this. No one understands how I feel, emotionally or physically. This diagnosis has kind of come as a double blow to our family, as my son who is five, was just diagnosed with juvenile diabetes in April of this year. I hope to get to know some more of you. Smile

Saysusie · Posted: Mon Aug 30, 2004 7:13 pm Post subject:

Hi Mommychristy;
Welcome to our forum and our family. Yes, this is the place to discover that you ae not alone, that we understand and we want to help and support you!
How is your son? Try to keep yourself informed and educated, both about Lupus and Juvenile Diabetes!!!
I am sure that you will be able to find friends here - Again....welcome!
Laughing

Peace and Blessings
Saysusie

Missy · Posted: Tue Aug 31, 2004 9:51 am Post subject:

Hi, there! My family can totally relate. I feel like we are just one big medical problem. My brother (now 21) was dx with Juvenile type 1 diabetes at age 6. Then, my Dad started going blind from a rare disease, PXE, a few years later, then my sister got dx with SLE in college, then this year at age 27, I was diagnosed with Lupus Nephritis! Needless to say, all of us are re-thinking having biological children!

Anyway, welcome and good luck with everything! My family did a lot of family conferences, picnincs, etc, when my brother was first diagnosed with diabetes. That seemed to help all of us a lot.

Missy

CK · Tadpole Joined: 23 Jul 2004 Posts: 21 Location: Florida

God Bless You! I also have a 5 year old son ( and a 15 month old). I am fortunate that they are both healthy, and yet I have a tough time keeping up with them. How severe is your lupus? I have been through some very tough times including chemotherapy, and through all this, it is the fact that I am needed as a mother that has really helped me push through.

How is your son? Is your husband helpful and able to deal well with the dx of his son & wife? It is tough situation to be sure.

Be strong! From meeting others with lupus, I find that to be common among us, our strength!

mommychristy · Not So Newbie Joined: 30 Aug 2004 Posts: 8 Location: PA

Thank you for the welcomes. Took me awhile to get back here! Embarassed

My son is doing fine, thank you for asking. We are having a bit of trouble getting him back to "normal" after a slight illness at the beginning of the school year. His sugar has been running pretty high lately.

CK · Tadpole Joined: 23 Jul 2004 Posts: 21 Location: Florida

Christy -

I only get to check in here every now and then. Hope all is well with you.

Cindy

Mixed up Lupus · Newbie Alert Joined: 07 Nov 2004 Posts: 1

Good morning Very Happy

I made one post on this site last year but I have memory lapses (lupus-related Confused

) and forgot that until this morning.
My doctor diagnosed me last year as SLE and the flare have been a year-long struggle for me, my family, and my doctor. Every week some new debilitating and painful area of my body ravages the tissues of my body. She began calling my disorder "Lupus-Like" and then "Lupus-Like with Systemic Autoimmune Connective Tissue Disorder". Hence my member name Mixed up Lupus. Smile

This rheumatologist also says my "sensitivity" to pain is the worst she has ever seen. Embarassed

I know I have a lot of pain but I also know others who suffer with SLE and I am continually amazed at what doctor's say to their patients about pain. Mad

I know my pain is real, I led a very active life despite years of pain, missed diagnoses, insults from physicians that it was all in my head and I was "too sensitive" and hypochondriac or Munchhausen. #Mad

I am appalled at what comes out of the mouths of physicians who say they understand Lupus and Autoimmune diseases but don't believe anyone should be on anything stronger than Lortab Exclamation

How ignorant (uninformed) Twisted Evil

(my family has physicians and nurses and they share their diagnoses for my problem and their "helpful" information that is just as hurtful and similar to many of the physicians I have seen this year.) Crying or Very sad

I was on the verge of crying all the time but am getting better.I begin my day singing old hymns, stretching, playing with my puppies and getting control of my pain with herbal hot packs. I found a small paraffin wax bath for hands spa on clearance sale and it helps, also. Cool

After reading many postings I realize I have found a safe haven for my questions, feelings, and loneliness.
So, I will be checking in when I can and read and enjoy meeting new people and I hope new friends.
P.S. **Thank you for listening, my postings will be shorter from now on (I just read the BB rules) have a blessed day.
Mixed up Lupus Smile

_________________
In His Grip,
Mixed up Lupus
rn@nursingcommunication.com

Saysusie · Posted: Mon Nov 08, 2004 12:37 pm Post subject:

Hi and welcome back to our fourm;
Yes, I know what you mean about constantly being in pain in different parts of your body! It is a viscious cycle that we lupies have to deal with on a daily basis. There is nothing worse than having a physician who does not understand your disease or who does not believe your symptoms.
Stand up for your right to be heard, believed and treated.
I have heard good things about the parafin wax treatment. Applying heat to the inflammed, painful areas seems to help most people.
Do not worry your posts, we are here to support you, to comfort you and to supply you with information. I wish you the best and again, welcome back!!

peace and blessings
Saysusie

val · Kitten Joined: 07 Dec 2004 Posts: 126 Location: england

Having nursed for ever--now a lupus patient, I was taught to treat the level of pain the patient experiences. What right has a Dr to decide whts the correct level of pain. If you are in pain--then you are in pain and it should be treated not judged.
There are plenty of good pain relieves about just be persistant untl you find something that suits you.
Good luck and don't be "bullied"
Val