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Life With Lupus

Haven't posted in a while, 9 day hospital stay


#1

Its been hard, first to get a diagnosis. Then to get treatment. Then help to get through the day. I don’t even know how to start this…
I have a primary Dr who i think almost let me die. She was very dismissive. I had very bad insurance. Couldn’t get a rheumy to take it. So I had to rely on her and a good but unexperienced in lupus dermatologist. Ended up with a open lesion that would not heal. It ulcerated, then tunneled. The pain was excruciating. (She said you could take motrin but you have a weak stomach, so I don’t know) she also said I don’t know if you have the real lupus. Biopsy was pos for tumid lupus. Said I was menopausal and nervous. But prescribed nothing. Had high blood pressure hence, the nervous part. My derm wanted to start plaquenil but was afraid to because of side effects. Longer story shorter, I got feverish and mentally altered. Was taken to er. Admitted and had Surgery! to debride the wound. It was stage 4 down to muscle. Hospitalized for 9 days. I’m now attached to a wound vac plugged into the wall in my bedroom as I write this. I was told it could have killed me. I am so angry. I am so sad. I am so embarrassed. I didn’t stick up for myself. Vent over… Thanks for listening


#2

It took a very long time to diagnose my daughter. She even went to Mayo Clinic in Florida. It took about 2 years of a fever up to 105 before they were able to control her. The two Doctors that I know that really know this disease are Dr. Michet at Mayo Clinic in Rochester, MN and Dr. McCune at the University of Michigan in Ann Arbor, MI. Regarding your wound, my Mother had a Stage 4 wound on her back after she had a massive stroke. They tried a wound vacuum and it did not work. Finally, it was daily cleaning the wound with antibacterial soap and water with no pressure on the wound that healed her within a year. My thoughts and prayers are with you. Stay strong. Keep fighting to get the lupus under control. Hugs. Carolyn


#3

I had a bad experience with a Dermatologist who 'held on' to me as a Pt rather than refer on to Rheumatologist. It is very difficult to be your own advocate with these umbrella type illnesses with numerous symptoms & possible treatments. I hope things work out well for you, perhaps this is going to be your year!~


#4

Oh my this is so awful! I am angry too! I am 65 years old and my husband was a doctor so I am not intimidated by them. If I don't like a doctor, I fire them! I am just so glad you pulled through. I would report that Rheumatologist. There must be somewhere you can send a letter to tell about her horrific care.

Ellen


#5

I'm so sorry that you had to go through all of that. I hope you heal quickly..... Good luck, and feel better.


#6

I am praying for you right now to feel better try to eat a lot of protein for wound healing.stay strong.


#7

We must stick up for ourselves and be our own advocates with lupus. In this battle I am finding out that we are our own best friends and should listen to what our bodies are trying to tell us. If a doctor needs to be fired then fire them and continue the search for a better one. Take care of yourself and we will pray for you.


#8

dear lil latinlupie, I am sending my very best wishs and prayers too you hope you heal soon body and mind as you I was hospitalized 2 wks ago due to inability too breath when lieing down they admitted me immediately put me on oxygen , breathing txs ivs steroids the whole gamit so im home now and am hoping you find drs in your area that support and are empathetic to your needs . Get well soon VEGASGIRL............


#9

Hi

I'm so sorry you have through all of that. I think my biggest frustration is that a lot of health care professionals don't know enough about this disease to help never mind heal. I am lucky that I have drs who can help me or refer me to someone who can. I am lucky that I am "old" and am on medicare because I have to option to get good care (if good care ) is available. Keep getting better. keep searching for some good professionals.

Take care.

Cindy


#10

This is awful news. I’m terribly sorry you had to go through this. Sending you prayers and positive energy. I too have had many awful experiences with neglectful doctors. I’ve learned really quickly that I must always fight for myself and get second opinions. Anyway, wishing you a speedy recovery and hopefully you can find a better doctor who actually cares enough to invest the time and energy in your care. Hugs

Brittany


#11

I am so sorry you experienced this one thing this disease does teach you is to be your own best advocate. I had a doctor once that almost killed me three times before I finally said enough. He actually told my husband I was a high maintenance patient and he found dealing with me difficult. My husband told him if he dealt with just a tenth of the pain and fatigue I was experiencing ( and work 60 hours a week) he would be balled up in the corner crying his eyes out needless to say that was the last time I saw that guy. If something doesn't feel right then get a second opinion or go to the ER the trick is to catch stuff in the early stages. I hope you find a good doctor that is willing to be a partner in your care I will say a prayer for you. God Bless Julie


#12

If you are as sick as you are, you must complain VERY LOUDLY until someone will listen to you! Those of us with life threatening auto immune diseases need to stick up for ourselves, even if we don’t have anyone else in our lives to do it for us. I don’t understand insurance companies. It would have cost them less to have you go to a rheumetologist, than to be in the hospital for 9+ days. Have your dermatologist run an ANA and dsDNA blood test. They will show if Lupus is a problem. It’s important to rembered that other autoimmune diseases are often associated with Lupus. Diabetes can cause wounds to heal slowly, or not at all. Also, check for low thyroid levels. Maybe they will agree to do those tests now, since you are already in the hospital.


#13

I'm so sorry you've had to go through this (sorrry to say) typical mis-Dx and un-Dx lupus story. What a shame on the medical profession to let this sort of thing happen all too often to people. I hope you'll find some support and comfort here on this Life With Lupus board.

I too was un-diagnosed even when ANA+. The rheumy said "You know too much about this disease to have it!!" and told me to leave his office. So I went without Tx for a year. During that year, my auto-immune caused type of glaucoma got much worse, leaving me now very near legal blindness. I was Dx with Discoid Lupus via biopsy two years ago, and my dermatologist realized I had systemic lupus but couldn't do anything about it without a rheumy to Dx it. My PCP sent me to the only one on my plan, and I told you what came of that....

So you see, it's not a rare story. But it's horrible about your lesion tunneling like that. I hope they are giving you adequate pain relief by now. Please know that people on this board care. And will post about that. Bless you and wishing you better days ahead.


#14

Been through this so many times its so hard to speak up for ourselves drs dont get it. God bless u and help u.


#15

Prayers are with you :heart:️:heart:️


#16

"40s" That's a heat wave LOL


#17

So sorry to hear.Concentrate on getting better and hang in there.


#18

Hang in there. I know the pain must be terrible. Rest and let your body and soul mend.


#19

You did the best you could! Lousy insurance sometimes is worse than no insurance, as you get sent round and round...and round, with no diagnosis or misdiagnosis.

Ooh, I am so sorry that this happened to you Lil latinlupie! How ridiculous that your doctor let your leg get ulcerated and didn't think that anything that was wrong! Why??? Will the wound heal, Lil latinlupie? I can imagine that it could have killed you, as it's unhygienic while not being treated. . Sound like a case of malpractice o me but I'm no pro.

Don't worry about venting! I have fibro and some of us vent on a regular basis. It really does keep us from going bonkers. Please try to not feel embarrassed. Your bringing it up here for others to see is really helpful.

I would write more but I'm sooooo tired.


#20

If you are still stuck with that rheumatologist, I would suggest that you bring any and all paperwork showing test results, etc. Then I would say very earnestly that I MUST have her written dx to get medical treatment, and without proper medical treatment, I could suffer from organ damage. Can you get a doctor to write a note telling the rheumatologist something to that effect? If not, find a reputable online source, like the Mayo Clinic, for instance. Find something they've written to support your argument, print it out and give it to the rheumy. Maybe bring a second article too from a different but legitimate source, as backup, if the first wasn't enough.

If she won't, then I would find another doctor, if it's affordable Check her out before you show up by asking her receptionist how she treats people with lupus or people who don't yet have a dx but who need it.

GOOD LUCK!!! You don't deserve to be fobbed off as you have been by your doctor. Just be persistent so you can get what you want.

Oberlin musician said:

I'm so sorry you've had to go through this (sorrry to say) typical mis-Dx and un-Dx lupus story. What a shame on the medical profession to let this sort of thing happen all too often to people. I hope you'll find some support and comfort here on this Life With Lupus board.

I too was un-diagnosed even when ANA+. The rheumy said "You know too much about this disease to have it!!" and told me to leave his office. So I went without Tx for a year. During that year, my auto-immune caused type of glaucoma got much worse, leaving me now very near legal blindness. I was Dx with Discoid Lupus via biopsy two years ago, and my dermatologist realized I had systemic lupus but couldn't do anything about it without a rheumy to Dx it. My PCP sent me to the only one on my plan, and I told you what came of that....

So you see, it's not a rare story. But it's horrible about your lesion tunneling like that. I hope they are giving you adequate pain relief by now. Please know that people on this board care. And will post about that. Bless you and wishing you better days ahead.