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LUpus Patients Understanding and Support
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I'm really ashamed of being ill

I went to my third hand/arm Dr this last week because they all say the arm is so complex. I've found contractures on the hand, supposedly torn bicep, pinched nerve in ulna and my arm is growing back together again due to an old fire wounf from 12 years ago. I also noticed some scars are adhering to the tendons in lower forearm.

I'm a big hot mess. 😑

So finally got moved up food chain to supposed best dude in Houston.

His Jr comes in gives me onces over. Checks numbness, straightens those contractures, ( which hurt like heck) but now I'm straight if not weak.

But Dr god comes in and says he can't operate on me because I could kill his surgical staff cus I have hep c. I said I've been undetectable for 12 yrs, he says, sez you. How unprofessional. How hurtful.

Told him I d bring tests or he could test me himself, then he said, why should I put " pretty inscions on you" and have them go septic or not heal because you have lupus? I told its uctd. He was a jerk. Once I started crying , he looked at a neck ct I'd had done when I fell in may, and he sent me for that, order EMG, PT, and then "maybe" he would operate

He had told to get used to the pain and the loss of my old life. I cried and said not acceptable, I felt so helpless. Don't know why I m so afraid of upsetting these guys!

I don't want him touching me.

I've decided to do the MRI, and keep the pain guy. But I have a real lupus Dr in early December. I'll hang on.

It didn't help hubby lost his job two days before this. And my mom is full on building me to travel right now when all I can do is barely move

7 Replies

This is very distressing and I am not surprised you are upset. I am sorry too about your husband losing his job at this time.

You have a lot to deal with but I do wish you well.


1 like

You think I'm doing the right thing since I have limited funds by switching from focus on the hand to the neck? I have had neck MRIs and shots and problems since 2009 minimum and I finally found pain doc. But he only does neck and back!

So maybe it's a sign?

If not is apinched nerve p there, that could cause the crippling pain?

I'm beginning to bend at waist and not walk well! I was so active 3 months ago! I still do the volunteer and my sobriety work because that is essential but that is beginning to become jeopardized because of pain.

My rheumie seems to be traveling alot but I got hold of her and begefd to go back on steroids for awhile, which began working immediately. I don't know if this planquenil has been helping after six months other than a nasty cough lol


I think you should be advised by your rheumatologist.

Be well!



Will do!


I really feel for you - I've been dealing with some pretty useless doctors this year as well. Stay strong and never feel ashamed. We'll go through more pain than a lot of people will in this life and without much compassion from others too, a good deal of the time. It's hard but makes us stronger and wiser than most as well!

Keep working to find the good doctors - there are some out there!

Best wishes for the future!


Thanks cookiecutter

Sorry for the delay in answering. I'm beginning to feel better, on pain management, hubby is back to work.

My gp fired me for pain pill seeking behavior! Because I had too many references to drs for pain supposedly. But that was bull crap since the Texas dept is safety checked our meds and the reference process is done by my insurance company. I have to have gp give as reference number then I call for appt, then Dr reviews my file to see if he will take !me.

If not, I start process over, never having seen the pain Dr. So I had a few referrals before I got with this good one.

Yet I got fired without them even talking to me, just looking at a computer formula. Theb@#%! I feel like she abandoned me when I needed support.

A friend said God just wanted me with a better Dr.

I'm just not impressed


That Dr God guy sounds like one of the most pristine specimens of human scum i've heard about in a long time. He needs to be slowly drowned in a shallow puddle.

Im really angry & disgusted that you've been so badly and repeatedly disrespected.

Never be ashamed of your illnesses. Hep. C deserves empathy! Pain deserves empathy! You do not deserve negative judgement from small minded, overly privilaged imbeceles and even smaller minded computer programs.

Im sorry you have to fight so hard.


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