View Full Version : So alone

03-19-2009, 04:35 PM
I am new to the world of lupus. I have not been officially diagnosed yet, but i have posted my lab tests on line so you can see why i think it will be positive. I work with my two best friends and i have been sharing a lot of the info i am learning. But guess what they do not want to hear about it. I feel like my life is taking a drastic turn and there is no one who understands. This is on my mind 24/7 and my future is uncertain. I am a 50 yr old widow with one 19 year old daughter who is in her first year of college. I have one sister in california and my parents are deceased. I work full time , just enrolled in college part time and now i don't know if i will be able to do all of this. Not working is not an option for me . Its all a bit overwhelming and i hate that i have to wait so long to go back to rhuemy(april 16th), because it makes everything so uncertain.

Angel Oliver
03-19-2009, 04:53 PM
Well you are not alone any more:no:. I am so glad you found us all, we will help you through this. Dont take it personal, the friends thing. I think everyone here has been through what you have said, you tell them, they dont want to know. I have had friends like that too. I can make excuses and say the illness scares them or i can say they are selfish, not real friends and are only there for you to listen to their crap.:yes:You decide.
You may not be able to see or touch us, but we are 'real' and so fully can understand you.
Well done on the work front and i so wish i could wave a wand so you didnt have to still work.
I know time goes so slow when you so urgently need to see that rheumi, like slow motion isnt it. If things get too bad, call and see if you can get another earlier appointment, no harm in trying is there?
You have us now.Ask us anything.We will always listen and what one can not answer, just watch another member here come right here and help you with their knowledge.

Now shut your eyes for ten seconds.........breath in through your nose......and out through your mouth....now feel this squeesy hug im giving you......imagine it go on........NOW--->----->----->H----U------G.


03-19-2009, 06:41 PM
hi teri,

i am 56, have been dealing with lupus and fibromyalgia for over 15 years, but was just diagnosed with lupus last october.

Angel did a wonderful job of telling you about us.....we truly are here....for each other no matter what the story is....we all understand, have been there, and have relied on each other to get out. I hope you gain as much support and compassion as you need to feel better.

have you tried to get an earlier appointment with your rheumy's assistant? sometimes i see the physician assistant at my drs. office, and i am very happy with the care....especially when in a flare that renders me non-functional.

please don't forget that we are here./... hope tomorrow is better.

03-19-2009, 08:05 PM
Hi Teri,

I would follow up on Phyllis' suggestion (mountainclimber) and check to see if you can get an earlier apptmt.

Everyone is different. Healthy people do not understand what you are going through and sometimes not wanting to listen is a way of denial for them. I think Angel worded it correctly. It is soo very true. Some people don't want "change."

You are not alone, ever. Make a list of daily symptoms and rate it one to 10 for your doctor's return apptmt. Get copies of all your labs and reports and create a separate binder at home. If you have questions, you have your labs to refer back to.

Welcome and keep us updated.


sick n tired
03-19-2009, 08:05 PM
Hey Terri,

I do understand the feeling of alone...your friends may not know what to say, or be secretely hoping that you get a better diagnosis..or they might not be who you thought they were...at any rate, as was said earlier, you are not alone here. Use this forum to talk to those who will not act like you were born with two heads...your friends perhaps will come along in their own way but it takes times for normals to understand why you might look fine but still be claiming to feel ill or exhausted...we here are there for you and pulling for you.
I know you said somewhere else, but my fog is really thick, when is your next appt. with the Dr? Soon, I hope....then perhaps you will be able to get some answers.

03-19-2009, 08:15 PM
Thanks for the support my appointment is on the 16th of april

03-19-2009, 08:16 PM
Thanks for the support my appointment is on the 16th of april

sick n tired
03-19-2009, 08:20 PM
I so hate to wait...I have an appt with a specialist opthamologist to check my corneas and see if I need a transplant, but couldn't get in to see him for a month...I know he is busy, but they hurt and itch...
I can only hope for you the time flies.

Take care,

03-23-2009, 07:26 AM
I hate waiting too. I have to wait until April Fool's Day to find out the results of my sleep apnea tests and I don't even know if I did the tests correctly. The Dr. didn't explain things very well and I had to shut the machine off after 12 p.m. It kept beeping and beeping and two of the readings on it went to zero. I am going to be really frustrated if I have to do the tests over again, especially after waiting to see the allergist for a month. I don't know if the machine was supposed to stay on all night long, or what?

The Drs. staff are worthless! I have a lot of Drs. staff issues.

Drink of Water