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Hi Everyone,

So I had a big falling out with my last doctor finally, after finally getting sick of the fact that he was only treating me with pain killers and demanding he do more, i got a call from his nurse saying "The doctor says everything is fine, there is nothing he can do for you. You are cured *click*"

Thankfully I had already planned for something like this happening with this doctor so I had all ready put in to see a new one.

So where am I at now? My new doctor did confirm the SLE diagnosis and he also gave me a fibromyalgia add on - Yippie *sigh* He has removed me from the pain meds (Norco and Vicodin) started me on Prednisone, and started me on Cholorquin. I see a dermotologist for a possible discoid issue, but that will not happen until May. He has assured me if plan A doesn't work, he will try plans B C D and E until we find something that helps. I just started this treatment last week, so I can't tell you if it's helping or not.

Why am I sharing all this information? Because through this process, I have come to learn that there are a lot of doctors out there that just plain don't know how to treat this monster that lives in us. It's easy to get caught up in your day to day life, and pain, and just flat out don't feel like dealing with everything and starting from square one. I had a huge fear of Starting over, because the original hunt to find what was wrong with me seemed to take so long with a lot of drama in between. I want to encourage you, if you have a doctor who just doesn't seem to care or know, please take the time to see someone else. We have so many issues between pain, changes in apperance, and lack of energy that it isn't easy, but it is SO worth it.

I have been through so much in my lifetime, and I can honestly say this battle is my biggest challenge yet. Hardly being able to walk, and having to tell my kids "Mom just can't do it" drives me crazy. BUT I am a warrior and I am not going down without a fight. I just needed to find a good team to support me, and I think I am finally on the right track. I am not pushing my beliefs on anyone, so please do not be offended when I say this has strengthened my faith. As a pastors wife, I have to live this out infront of a lot of people, and I have a lot of WHY ME moments, but I know that there is a reason for everything.

Please if you need to talk, need encouragement, or just want Prayer, please don't ever be afraid to message me.

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thank You. i need a New Dr mine doesn't help My pain and hardly seems to care that i exist besides blood results on a screen

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I found mine by searching the Internet for lupus specialists in the area. Then I went through and read every review that came up of each doctor. Don’t be afraid to call and ask questions too.
Just because they are a rheumy I doesn’t mean they are familiar with lupus treatment. Keep that in mind. Much luck to you!

4

T,

As we have spoken before, I always encourage lupies to advocate for their care. YOU are the one that knows how you are feeling and if a tx is working. If the only thing your doc is doing is trying to control the pain, it's time to move on. To say to Mama "you're cured" is just stupid. This is a chronic disease so "cured" is a word we will likely never hear. Remission is different. Both the Lupus and whatever "comes to the party with it" needs to be treated with the pain that accompanies it. It cannot be one or the other.

When you look for another Rhuemy, ask if they have experience in dealing with Lupus patients. I have only been able to find 2 other Lupus sufferers in my entire city of 1 million. That makes it difficult to find someone well versed in this disease.

Good luck and good health to my fellow Lupies,

DeAnne

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DeAnne, I was told that because he no longer wanted to care for me. It was a dumb but thankfully I knew better. You are right, we do know ourselves better than anyone :slight_smile:

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I'm so glad you were able to find another doctor. My primary care doctor wouldn't listen to me when I told her that the fatigue and aches were not normal and not "just a virus". I was so fed up and frustrated with her that I demanded she order some blood tests (told her which specific ones I wanted) so that I could have current stuff for when I called a rheumatologist. She should have listened to me because I was right. My rheumatologist is amazing and I really lucked out with him. It's so important for us to have some good fighters on our side who know what they're doing.

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Oh, MamaMarshall,

I am so sorry that you had a bad experience. What I have found, perhaps because my dad was a doctor and from personal experience, that if a doctor (especially one with a God complex) is unable to help their patients they turn it around to somehow make it the patient's fault. In my case I had a back surgery for a ruptured disc...6 weeks after the surgery it re-ruptered...somehow this was my fault and the doctor refused to continue treating me. He was the one with the problem...he couldn't admit he failed.

I was also told by one of my favorite doctors that many docs aren't particularly fond of Lupus patients as (and we all know) we can be moody, cranky, depressed and all of those very personal responses to a chronic, sometimes fatal, disease. Some docs are only interested in the disease and not terribly interested in the patient, which is too bad as our mental well-being can help a lot with our physical recovery.

I am sure you will find your match and it will make all of the difference.

We HAVE to advocate for our own well-being. No one else is going to do it for us.

Good for all of you!

DeAnne

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Thank you for this encouragement. It is helpful to folks like me who are just starting out on this journey.

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Glad you find this helpful :slight_smile:

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Continue fighting the the fight of faith my sister!