This is my Lupus! & See My ACTUAL ANA LABS & Vlogs

My major complications with my lupus are cranial neuropathies, caused by damage to the myelin sheath on the cranial nerves, severe peripheral neuropathy, anemia, kidney damage is in remission, extreme photosensitivity, vascular lesions, rashes, hives, vasculitis, constant viruses causing muscle weakness, plantar fasciitis from connective tissue damage, retinopathy, and I'm sure I'm forgetting some...OH lupus fog, lol, reynauds, livedo reticularis, hair loss, joint and muscle pain, fatigue, gastroparesesis...I'll come back later...  I take 22 medications a day.  I also have osteoarthritis, cervical splondyosis, diabetes, hypertension, pcos, pernicious anemia.  Again I'm sure I'm forgetting..so I'll just say, lupus fog.

I just fired my rheumatologist for IMO undertreating my lupus.  For lupus I take 400mg plaquenil, meloxicam and usually 40-60mg of prednisone during flares., which so far has been about 5 times a year.  I already have cataracts and a definite love/hate relationship with the stuff.  It's the best worst drug ever!

I'm on a mission to get Benlysta.  I found a new rheumatologist who will prescribe Benlysta and has an infusion center in his office.  I don't understand why my previous rheumatologist refused to treat me with any biologics or imuran or methotrexate.  Instead he's continued to treat me with high doses of prednisone.  I thought those other meds were instead of.

My ANA is and always was highly positive.  I have had trouble with the titer ANA test and have gotten messages from the lab that they cannot test my blood due to immune complexes.  My rheumie said it's because the ANA in my blood is too high.  They started using the direct ANA to test my ANA and it is always positive (once it was a low positive, just once) my smith antibodies and double stranded antibodies on the ANA panel are highly positive so I was dx'd early on during my first big flare in March 2010 by my dermatologist who did a couple core punch biopsies from a couple of my rashes from the sun (UV).  At the time my rashes and skin were so bad that I tested positive for porphyrins in my urine and I still need to do the more detailed testing but I've not done it yet.  I need to.  Bad girl.  Bad.

Anyway my blood platelets are high instead of low but I still have trouble with blood clotting.  I understand that happens sometimes with lupus.

My problem with getting more agressive treatment lies in the fact that my complements are not usually low and my sed rate is not usually high.  I don't know if that is a prerequisite to being treated with something other than plaquenil and prednisone but I aim to find out.  Oh yeah.  I'm on a mission to try Benlysta.

My goal is to have quality in life.  I'm married 23 yrs this month to a great understanding guy, have two children, one grown, one only 11, I'm 50 yrs old, live in Arizona, and the trigeminal neuralgia and cranial neuropathies especially are eating away at me.  I worry about cns lupus, I worry about tia,s and strokes since my grandmother had undiagnosed lupus, and so far I'm eerily following in her symptoms!, and she suffered hundreds of tia's in her later years, which I am approaching.  We used a cane at the same time, had nerve damage and diabetes at the same time, skin issues and lesions and vasculitis, livedo reticularis, blood clotting problems, reynauds.  It's unbelievable.

It's PULLING TEETH to get my doctors to put a stamp on the cause of my cranial nerve issues.  I have trigeminal neuralgia (it comes in clusters of attacks), geniculate neuralgia, have had Bells Palsy twice, burning mouth syndrome, distortions in taste and smell, vagus nerve damage symptoms and some autonomal damage as well.  I take anti-seizure medication for it and prednisone.

I just think there must be a way to nip it in the bud instead of wait for more serious cns problems.

That's my story.  I spend most time at home.  My home is my castle since I can't go out in the sun often., and I'm sick alot.  You lupies know how it is.  One minute fine, one minute sick.  I am waiting the two yr wait for my SSDI hearing and I was denied twice.  I'll blog about that.  I contacted Senator Quayle's office and they inquired with the SSA for me and I have an attorney, so I'm hoping for disability soon.  I am involved as much as I can online at support groups and gearing new people I meet towards meeting others like me with lupus online so they can not feel so alone.  I make music videos when I can to help create lupus awareness.

If you made it this far, lol, thanks for reading.  I hope something I say will help someone else with the same problems or questions.  I'm always here and at youtube and answer all my mail.  I'm just a lupie looking for living a better life and managing this dreaded disease.

Here are my videos and under them I will put up my ANA labs from March 2010.

((((HUGS))))  Love Julie