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CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 6/20/2007 9:24 AM (GMT -7)   
HI Everybody!
 
Hope this message finds you all well and enjoying summer.  I have been reading the forum every few days but not posting as much.  Now that my diagnosis is six months old I feel a bit more in tune with what I need to do to keep feeling well.  The initial fear and anxiety that controlled me when first being diagnosed with lupus has subsided quite a bit.  Not totally but I have a much better outlook now.  I guess I was just consumed with everything lupus... reading websites, books, pouring over each and every test result I got back and researching them to death I sort of got burned out.  For a while there lupus was really controlling me.  It was all I would think, read and talk about.  That gets old quick!
 
I had a very positive rheumy appt. at the end of May. So positive in fact my rheumy doesnt want to see me again until mid July!  It feels great to have that break from dr's and labs.  July will be a slew of appts. (blood testing, another 24 hour urine catch, rheumy appt, 6 month check with retinal specialist and my yearly physical with my general dr).  I guess I would rather get it all done in a month then have to stretch it out and go to a dr. each week!
 
All in all I have been feeling quite good.  In the past month I have only had one fever and one day of terrible fatigue.  I do have achy joints at times but nothing like I was experiencing before.  The "buzzing" in my hands and feet still happens but nearly as much as it did before.  In fact, last Sat. my husband and I helped me sister and brother in law move.  We started at 8am and finished at 9pm (it was 89 degrees out, humid and very sunny).  I loaded up wtih sunscreen and I was okay all day!  They lived in a third floor walkup so it was tons of trips up and down stairs.  That was a big test for me and I feel I passed.  I was a bit sore the next day but who wouldnt be after hauling furniture and boxes all day!
 
I think of you all and send you good wishes and healthy vibes from my computer screen.  Now that I dont feel so consumed by my diagnosis and paralyzed with fear I plan to post more.
 
I am still a bit nervous for my next round of blood tests. While my C3 did raise 2 points (the big victory was not having another 10pt dip) my urine is still showing a trace of protein.  I guess that its good it never goes past a trace but I still worry. 
 
Anyhow, have a great day :)

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/20/2007 9:38 AM (GMT -7)   
Hi CityGirl,

So nice to hear from you and really happy to hear that you are doing well. You are right, all the Lupus information and tests, etc etc can get old and you can get burnt out. That happened to me last year from going test to test to test. I finally gave up for a few months until I couldn't anymore and I had to get into the game because I was starting to go downhill. Now I'm feeling burn out again with all the appts and tests. I know its part of it but when you start to become a "professional patient" and buy a calendar for your purse just for your appts, it kind of pulls on you.

I hope your tests look good in July. It seems that your doc seems confident since he is giving you a break from the labs. I'm so glad to see you back and looking forward to your posts.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/20/2007 11:04 AM (GMT -7)   
Hey CityGirl - Haven't seen your name in eons, kind of got lost myself for a while there. Did they ever find a diagnosis for you or are they still trying to get it ironed out? Like me, you sounded like you fell into that "it doesn't make sense" category. My symptoms were not typical for lupus or CNS lupus during the first 8 years. Is now though. My body got it a little backwards I think.

Well, glad to hear from you. Dr. and testing burn out is normal. Leave me alone! syndrome I call it. I can run but unfortunately not hide. At least not for long. Trust me, get all you can done now. This stuff is hitting hard me now and still searching for some of the clues as to what is the cause. Helps them know your body, how it hits and the medications it may best respond to. Just hopefully your doctors are better than mine and actually know what to do with the information.

Hope to hear from you soon & take care - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 6/20/2007 11:17 AM (GMT -7)   

HI!

I was officially diagnosed with systemic lupus last Dec.  The kindey issue is fairly new, those issues cropped up in March/April.  Via my blood and urine all my kidney tests are normal except for the slight protein that is right now still a trace.  My rheumy thinks it could be due to inflammation as nothing else in my blood/urine is abnormal.  She also said I might have a trace for the rest of my life and a trace isnt something to worry about or treat.  I hope she is right! 

I am still on 400mg of Plaq. per day and nothing else.  I am glad for that and hope to continue this regime.  We will see what my tests say in July.

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/20/2007 2:18 PM (GMT -7)   
It's great to hear from you again and also to hear that you are doing so well. It gives the rest of us hope. I hope you continue to feel good and that your labs look good at your next appointment. Take care and thanks for the update.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/20/2007 9:41 PM (GMT -7)   
There's the update I was looking for on you! I'm so glad it's positive. You sound wonderful. I hope the rest of your summer is as good as it has started. Let us know how the appointments and labs go in July. Oh, by the way, I am totally impressed that you could put in an entire day of moving!!! Are you sure you're only taking plaquenil--no bionic parts have been added or anything :-) Stay happy!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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