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Apparently, I signed up on this website May 2006; but at the time I didn't have regular internet access. Now that I do, I thought I would check out the site and forums a bit more.

The summer before my 14th birthday, I was diagnosed with Lupus. The only reason my family took me to the doctor that summer was because I had to have a complete physical before I started my freshman year of high school. My right knee had been badly swollen for several months; and of course, the doctor noticed it. After many, many tests they concluded I had Lupus. I continued to experience issues with arthritis over the years, had serious problems with getting enough sleep, and a recurring butterfly rash on my face that worsened with sun exposure; but the exhaustion has been the worst symptom by far, though.

My parents never did take me back to the doctor after that initial diagnosis even though I remember the doctor telling them to schedule a follow-up for later. I never knew why until recently. To be honest, I thought they must have misdiagnosed me or something. I figured it was a stronger possibility that my family just didn’t have the money for the continued medical expenses. I don’t really remember anyone ever explaining anything to me or if they did, I just blocked it out. I’m 37 years old, now. About three years ago during a time when I’m sure I was having a flare-up, I finally decided to ask my mom why they never took me back to the doctor. She simply said, “God healed you of that horrible disease,” in a very matter of fact manner and changed the subject.

Since the symptoms were never horribly severe, I just didn't think about it. I mentioned it to my doctors when I went in for physicals and during both of my pregnancies; but no doctor has ever taken me seriously about having Lupus. This became particularly clear a couple of years ago when I began to experience problems with my thyroid and much more severe arthritis pain. I think they did maybe 2 blood tests and left it at that, deciding that nothing was wrong with me other than a broken thyroid gland. I was frustrated and gave up. I didn't even continue the medication to correct the thyroid problem.

Over the years I've been diagnosed with numerous psychiatric problems; so I kind of feel like my credibility is shot with anyone in the medical profession. I no longer trust doctors or psychiatrists, for that matter, because it just feels like such a guessing game with all of them; and I'm tired of feeling like a guinea pig. At this point, I couldn't go to a doctor even if I wanted to because I simply can't afford it. Ugh, I'm sorry, I didn't mean for this to turn into a book. I just don't have anyone to talk to about all of this.
 

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Hi Pixygiggles, I like the name, a very happy one!!! :)

I read your story and was filled with compassion. I am a mom and I can't imagine leaving my child without medical care. I am sorry, I do not mean to criticise, it is just outside my realm of comprehension.

You do seem to have suffered unnecessarily. ((( hugs ))) Do you have any copies of letters or bloodwork? Could you get a copy of the original diagnosis? This would help you in future. Lupus can cause some neurophyschiatric problems, which need treatment. Are you on any treatment at the moment?

You do really need to get some sort of treatment plan sorted. I hope others will be able to help you more. Keep posting and let us know how you get on.

Join us in the chat room sometime!!!!

Take care

Deb x
 

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Saturday

Hello

I am very glad that you (and I) found this site. You have had a hard go of things, your story tugged on my heart.

I am new to this site and like you and I do not want to "dump" on everyone, but everyone needs someone to listen and who better than those who really understands.

Your family sounds like mine. My Mom stayed at home and raised four girls.
I think money being tight is the reason we did not get follow-ups on medical things. We were loved but not brought up to complain and no one missed much work for illness. That makes it even harder to accept Lupus, I think, because "suck it up and smile" does not work for Lupus.

I waited so many years and did not keep a journal (I am today forward though). I worry about the doctors believing me and it is hard to think back and list the symptoms over years.

Are you on any medications for any of your symptoms? After seeing one doctor for thyroid, one for this body part, etc... I decided to find one doctor and did not care what his specialty that I could trust and just lay it on the table and ask where do I start. My new doctor was a physical therapist who went back to be a family physician. He is young and was willing to research Lupus and track all of the piece meal blood tests that enabled me to go to a Rheumy and Neuro who both agreed on Lupus as a diagnosis.

It may or may not be Lupus and sometimes the thought of gathering all the paperwork is so overwhelming (especially if you are struggling with a flare up or exhausted by the inability to sleep). But something changed when I finally had the diagnosis, I felt like I had somewhere to start.

I hope that you find a few good doctors that will work with you to come up with a game plan for your health. Take care of you, rest as much as you can, maybe join the Y, swim or take up Yoga. It is hard to excercise vigorously when that tires you so much and makes the pain worse.

Carly

Each day is a gift just waiting for you to open!
 

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Hi Carly, Its so sad you were left without treatment for such a long time, perhaps your parents just couldnt accept that there was a real medical problem, and hoped it would just get better by itself. I hope you can now get the treatment going, and begin to feel well again. There are many people here with excellent advice, all having been through the same thing, so please take advantage of them. Let us all know how things go for you. Take care :)
 

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Discussion Starter · #5 ·
Debatat, thanks for the comment about my name. I've consistently managed to use "pixygiggles" just about everywhere online, so much so that I consider it my online identity.

I tried getting copies of the blood work and medical records prior a long time ago after reaching adulthood; but UT medical center told me the records had since been moved to an archive and refused to cooperate. It's been 23 years since that initial dx; so I'm sure I would have no better luck now.

To answer debatat and Carly, I am currently not under any type of care for neither medical nor psychiatric issues. After a 3 year long fight for it, I finally received Social Security disability due to the psychiatric problems. I do have Medicare through Social Security; but since I have such a very limited income, I worry about using Medicare due to the deductible which I just simply cannot afford. All I can see are the $$$ when it comes to care. Put more simply, the psych issues are preventing me from making responsible choices about the medical issues.

Carly, journaling is a good thing. I've kept journals for over 15 years, now; and they have kept me more sane than a therapist could, lol. I only wish I was more motivated to set up a journal that kept track of physical & emotional symptoms on a daily basis. There should be a computer program for that. Who knows, maybe there is.

Anyway, thanks for your comments. I look forward to getting to know people better here. :)
 

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Welcome pixygiggles,from your name it sounds as if you have a good sense of humor,which I find can help a lot in dealing with the disease and doubt by some "medicalprofessionals".Take care mea.
 

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Hi hun, what a great name you use! It's fab! :)

My heart really goes out to you after all you have been through - it must be horrible for you (((hugs))) You clearly show a huge inner strength though hun, which you should be proud of. You are most definitely a fighting star.

In some respects, I can understand a bit of what you must have gone through, as I suffered for many years before I was diagnosed with my crohn's disease, and I was only a kid too. By the time I was diagnosed, my body was in a terrible state, and the paediatrician doc said that if they hadn't caught me when they did, that she would have only given me one week to live. But because I had a very negligent GP and on top of that my mother was mentally ill, and my dad just couldn't cope, I had been left for too long. But hey, at least I'm still alive now and here to tell the tale!!

I've only just found out that I have lupus, and to be honest, I'm very much in the dark really as to exactly what's happening to me and what might happen. I'm hoping to know more in the next few weeks.

I really sympathise with you on the medical care front - it must be awful not being able to afford the care you need and deserve. I know how lucky we are in the UK, having it all free. I did live in France for a couple of years- and that care wasn't free either, but the system is a lot different I think to america and possibly a lot fairer.

I do wish you well hun and just hope and pray that somehow you can get some understanding docs who will help you and help fight your corner. It sounds as if you need someone on your side.

Lots of hugs and love, Ruth xx
 
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