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Lupus - July 3rd 2018, 04:50 PM

After 3 years of being misdiagnosed I've finally been diagnosed with Lupus. For the past week I've been reading up and learning as much as I can about the disease. I'll admit, I've felt so relieved in a way, because my symptoms are finally adding up. I've joined a support group on FB so I could ask questions of people who live with the disease daily, and it's been a breath of fresh air to know I'm not the only one who is dealing with this and going through this.

After finally finding out what's going on, I have another doctors appt with a specialist awaiting treatment options, which I'm more than willing to welcome, because the past two months my pain has went from manageable to terrible. I'm not to keen on pain medication, but I think at this point I'd at least consider it on a short term basis. My husband has been super supportive of this situation though, which is a nice surprise. Some of my other family members doesn't quite understand, or care to really.

It has been difficult trying to explain to them how I have these problems which they can't physically see, but to know that this is as intense as something that can be physically seen. My husband has been trying to talk to me about applying for disability. I haven't been able to work for 3 years, but I haven't had any doctors behind me with it, because no one believed that I had something wrong with me. Now that I do, and we have a doctor who understands it, and now that we do, he wants to move forward with applying. However, I'm nervous about it. I don't want it to seem like we only wanted this for the benefits. I know I shouldn't feel that way, because when you need it, you need it.

I'm already considered medically frail by my insurance company, and clearly I'm not faking having lupus. I also know that we really could use the help, because I haven't been working for 3 years, we've been struggling, and I really don't want it to get to a point where our daughter struggles or suffers because of it. I dunno. I just guess I should apply, and go with the motions. Either I will be accepted, or I won't. Anyway, here's to finally knowing what's wrong with me, and knowing that what I'm going through isn't all in my head. I'm super happy about that.
   
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Re: Lupus - July 4th 2018, 02:28 AM

Hey there,


I am glad you have a diagnosis. I know it can be frustrating to be struggling but have no support or understanding from doctors. I think applying for disability is a good idea. It might be a stressful process but if you can get approved it might be beneficial to you and your family. If you are in the USA and have any questions about Social Security please feel free to message me. I can try and help you to the best of my ability. One thing I will say is don't get too upset if you aren't approved right away. It's a process that takes time.


Best regards.


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Re: Lupus - July 4th 2018, 02:34 PM

Thanks a lot. I've been struggling with the idea a lot. I got online to see what I would need if I wanted to apply, and after that It just seemed very overwhelming. I've taken a step back, and I've thought about making an appointment with my doctor to see if she can point me in the direction for some help.

And it does feel so much better now knowing what's wrong with me, and being able to find support with others dealing with the same thing.
   
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Re: Lupus - July 9th 2018, 10:51 PM

Hey, I saw this a while ago and meant to reply but I never had the chance to get back to it. Anyway, just wanted to say I know how hard this is. I don't have it myself, but someone very close to me does and taking care of them is a daily struggle. I know what you mean when you say it's not physical, but still so intense.
If you ever need anything from me let me know. hope everything works out.
   
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Re: Lupus - July 10th 2018, 01:54 AM

Hi, my mom has lupus and it's been a journey. I know how hard it can be and I hope it gets easier for you. here if anything
   
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Re: Lupus - July 12th 2018, 03:36 PM

Thanks everyone. It has been hard. We've been going just one day at a time. Still struggling with trying to get in to a doctor that will accept my insurance. (A specialist, I already had a primary care doc) and it's been rough. My symptoms are getting worse, and for me it's more mental to deal with, not so much physical because I've delt with the pain for so long before actually seeking help for it. (I really hate doctors.) Hopefully soon tho!
   
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