New member, ljardo

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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 9/9/2014 7:17 AM (GMT -6)   
New member, ljardo, says

Hi everyone! I was told about this forum from my girlfriend and so far I am so happy I did. I don't quite know the etiquette yet so please feel free to tell me if I'm doing something wrong.
I was diagnosed with fibro back in 05, the Dr wasn't really sure if it was lupus but had a good feeling. So here I am, switched Dr's a couple of times and in 2010 my latest Dr has confirmed SLE Lupus and as the years have gone by everything seems to be falling apart.

I guess I was in a bit of denial seeing as the last 3 drs seemed to just want to load me up w pain meds and never sent me out to specialists. So when lupus was confirmed I definitely questioned it.

Too make it short,(if I can, lol) I now have the Lupus of course, a lot of pain just about every where, there are days i cant use my wrist, to bend, wave abd sorry but to even wioe kills me, i have arthritis in my knees, hyperthyroidism, cyst on the remaining Thyroid, that I'm finally getting the chance to take care of, due to lack of insurance. I have neuropathy, a Cecal mass/tumor in my colon, my vision is very blurry and I can't remember conversations, things I've done and lose things. I'm assuming that's the brain fog you speak of. I also have what's to be believed a mass on my lung. My liver enzymes keep shooting through the roof and have a "fatty liver" I have a right ventricle problem in my heart. The protein in my urine is extremely high. I have degenerative disc disease and of course torn and bulging discs. There is more but I'm sure I have gone on too long. But i do want to say, because of what I've read about the shrinking frontal lobe I wanted to say mine too is shrinking as of 2yrs ago and I get horrible migraines, I've never had pneumonia either. I just wanted to know if you get migraines Donna?
I also wanted to know, so that I can try and pull out of my denial stage and start acceptance, is everything I named pretty spot on w Lupus? My ANA and RA Dr's diagnoses should be proof enough for me but to hear it from you ladies that suffer w this awful disease would really help me w my struggle. I am only 39 but i feel like I am in my 80's.. I can only imagine what my life is going to be like as I get up there in age.
Thank you for reading and again any words you have would mean a lot to me. Prayers for us all.. ~Jennifer

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couchtater said

Welcome, Jennifer.
This is a hard hand we've been dealt and it can get rough at times like you know already. I was like you....Queen of Denial. I knew something was wrong but it was hard to accept lupus.

The important thing is work with your new doctor on getting better health. Find good support. This site is good for questions, but also join a local group for the human contact. I see a psychologist who helps me with the ups and downs of dealing with a chronic illness.

Make sure to post an introduction thread so you won't get lost in this thread.Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))


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lairod said
Hi Joy!! Thank you so much for the warm welcome and the very helpful information, I appreciate it!

It's a very hard hand and I have been moving forward w specialist thanks to this new Dr. I def need to add a phsycologist to my group of care. As of course I am very depressed and high anxiety, don't really like to socialize out side of people I know or family, so I'm not sure about an outside group quite yet. But again thank you!

I will figure out how to do the introduction thread. But not sure how to do the line w each persons ailments and the little "pep you up quotes", but I will play around w it as I'm sure you all had to do!

So happy to be here!

Thanks again Joy!!

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/11/2014 4:10 PM (GMT -6)   
Hi ljardo. I'm glad you found our forum. I'm not nearly as good about posting and responding as I should be, but one great thing about our forum is no one judges you. I'm glad you're seeing specialists for your many serious conditions. Just be sure you either keep them all informed or have one doc (most use their primary care doc) who gets copies of all your records. The number of specialists I see Depends on my symptoms. It sounds like you should see a nephrologist (high protein in urine), cardiologist (right ventricle), gastroenterologist (colon and liver), endocrinologist (thyroid), and possibly a psychiatrist. Oh, lets not forget the most important: your rheumatologist.

As for your question regarding my brain, I don't get lots of headaches and when I do they are not full blown migraines. Lupus has its' own version of headache too and they're a bear.

As for your state of denial, almost everyone who is diagnosed with SLE goes through the stages of grief. Not as in "good grief" and it sure isn't pretty because ultimately you accept that the life you had is gone. Eventually, hopefully, you will not only accept your new life including all the aches, pains, tears, and endless medical visits, but you will also find your new life fulfilling with lots of enjoyable activities. Personally, I reach this with the help of my psychiatrist whom I've been seeing for over ten year. For many folks taking psych meds is tough to swallow (pun intended), but as my rheumy says, "If a patient with SLE tells me they're not depressed, I think they're lying."

Well that's certainly enough from me. Please keep us updated on how you're feeling and if you just want to vent to us, that's fine too. There's always someone to listen. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
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