Many people think people with lupus are just lazy....

Thursday, December 30, 2010

wow. my fingers & hand are REALLY hurting. this is new. i haven't had this kinda pain b4. itz not just stiffness, it really hurts. i've been staying away from ibuprofen products, but idk if i can go without it 2day!
Happy New Year's Eve Eve! Christmas came & went! Alot of hype 4 jus 1 day! I heard sum1 say Christmas needs 2 be a 3 day event/holiday! I agree. Bcuz there is alot of hype leading up 2 1 day & then itz over! I usually have such profund sadness the day after Christmas bcuz of the letdown after all of the building up, but this yr was very different...bcuz i was soooooo broke this yr I didnt have any building up, so there was no letdown! I was sad leading up to & during Christmas. But yay itz over. Now time to ease jnto a new year. Ease i say! We'll see about the ease part. Idk how that story is gonna b written. We'll have 2 wait & see. Well gotta go...gotta lot of bilateral finger/hand/wrist joint pain! Ouch!

Wednesday, December 22, 2010

New place 2 live, new job.....& of problems! But i have 2 hold on 2 the belief...."that all things work together for good to them that love God, to them who are the called according to his purpose." im tryna decrease stress 2 help manage my disease & in sum wayz it has been decreased, but the stress also changed 2 different stressors! So 4 now, physically i've been doin aight, no major symptoms goin on, so i con't 2 b blessed! I hope every1 has a very Merry Christmas as we hopefully focus on the reason 4 this season & NOT get caught up in the hype of commercializm! Thatz an easy focus 4 me this year bcuz i'm broke! Lol. Gotto go & see how life turns out as my world spins....

Wednesday, December 1, 2010

Wow. Itz been a lonnnnng time since i blogged! My life has been sooooo hectic lately! I moved (temporarily), changed jobs (started this past Mon), i' still the adventurer leader @ my church & the kids graduated 2 move on to their next class! Just so much going on! I hope everything works out with this new job bcuz it cuts my commute down by 1-1/2hrs! Whew! As far as the lupus....i still have my crappy moments....but im could b soooo much worse! I had sum type of allergic/hypersensitive response about 2 wks ago. Idk know what i was having a bad response 2.....thatz the difficult part. Since idk what caused the problem, i cant avoid it, so i never know when/if it'll happen again! I was in bad shape! Fever/chills, difficulty breathing, i thought i was leavin this earth! But as usual God saw me thru! Im still here. Praise Him! Til next time as my world turns/spins & does back flips......

Monday, October 25, 2010

Ulcers in my nose!!!! Sooooo painful!

Tuesday, October 19, 2010

Been awhile since i checked in! I've been really busy in my day 2 day life. Moving, Lil one starting 1st grade, lookin 4 a new job, etc etc! Jus plain ole busy! I've been doin ok physically. Nuthin really bad goin on. Yay! Jus the same ole pain in the butt stuff...mouth infections, uuuggghhh! Lips a lil swollen 2day, neck/shoulder/back pain. & TiRED!!! Jus trying 2 wait 4 my life 2 slow down ;) as my world spins 2 quickly.....

Monday, October 4, 2010

Had 2 move yesterday.......I am soooo sore & stiff. I really should have had movers! & the bad part is that I'm no where finished! SMH.......

Friday, September 10, 2010


Sunday, September 5, 2010

Im pooped....

Saturday, September 4, 2010

Woke up very stiff!!! Hands swollen! Smh. I have a long day ahead of me! Alot 2 do @ church 2day, so hopefully all of these symptoms will subside....

Wednesday, August 11, 2010

Mouth/throat sore & very uncomfortable. Neck/shoulder pain. 2 fingers in pain & i have 2 finish this childs hair b4 we go outta town 2morrow!!!! Ugh.....

Monday, August 9, 2010 Dogg on the View with his daughter who has lupus :-( of the wonderful crap I have 2 deal with!!!!!!!!

Saturday, August 7, 2010

Stiff all over, lips swollen again & these stupid mouth ulcers!!!! Uggggghhhh!

Wednesday, August 4, 2010

Oh my itz been awhile since i've blogged!! I've been soooo busy lately. Vacation bible school @ my church last week, car broke down last week & then jus the regular ole day 2 day stuff!!!! I cut off all my locs!!! So i'm jus wearin a short natural curly do! I like it! I feel! Anyhoo, I've been feeling sorta ok physically lately. Since I cut my hair I've been really rebelling against my lupus...I haven't been wearin hats when I go outta the house!! But, I haven't gone too crazy...I've been putting on 100 SPF on my face/ears b4 heading outdoors! But this evening I haven't felt well! Nauseous..yuck...i hate this feeling! Oh, btw my rebellion is catching up with me...i'm noticing a discoid (the type of lupus i have) rash developin on my ears!!! SMH! Will i con't my rebellion @ my own demise or will I succumb & return 2 the road of submission 2 this disease?!?!? Guess we'll have 2 wait & my world turns & spins & shuffles........

Sunday, July 18, 2010


Wednesday, July 14, 2010

I have been have "Lupie" dayz this week!! All these symptoms r gettin on my nerves!! Pain, stiffness, headaches, nausea.....Annoyin!!!!

Monday, July 12, 2010


Saturday, July 10, 2010

Resting.....despite all of the stuff that needs 2 b done :->

Friday, July 9, 2010

Extreme fatigue.....

Thursday, July 8, 2010

Fatigue, shoulder pain....blah, blah, blah........

Sunday, July 4, 2010

Oh my!! Spent a good portion of the day outside & walking. Of course i took all of the appropriate sun precautions: hat, shirt & long shorts w/sunblock in the material & 70 spf sunblock on any exposed areas!!!! But now i lay here completely exhausted & my knees r sooooo painful!!!! Hope this night's rest is rejuvenating....despite the fact that it rarely my world turns....

Friday, July 2, 2010

Stupid sun beamin on me thru my front windshield causin my eyelids 2 swell.... The 1 place i dont put sunblock!!!! Smh.

Tuesday, June 29, 2010

Knees warm & swollen......smh

Thursday, June 24, 2010

Tired, nauseous, shoulders hurt!! Another day in the my life.....

Sunday, June 20, 2010

Why do mornings have 2 be soooo rough?! Stiffness, pain & i wake up tired!!!!! Smh

Saturday, June 19, 2010

Hey everybody, sorry it's been awhile....i've been aight! Well pretty much aight in comparison 2 other times. I have a lot going on in my personal life, but my physical life has a lot of ups & downs. I have pretty much followed up on with all of the specialists. The only 2 things I haven't followed up on is getting the MRI of my head (2 see if there's a reason 4 the freq headaches) & I should really be under the care of a Rheumatologist. Now a Rheumatologist is the doctor that most lupus patients see to manage their disease. This is a very sore subject w/ me bcuz no rheumatologist will diagnosis me w/systemic lupus. Don't misunderstand my frustration....i do not Want to be diagnosed w/Systemic lupus! I have a diagnosis of Discoid lupus, that's bad enough. But, it is awful having a lot of symptoms/problems but not having a diagnosis to explain why all the problems r there. I have painful joints, chronic fatigue, chronic mouth/nose ulcers, symptoms of raynaud's....all being symptoms of systemic lupus.....but no "organ" problems (thankful 2 God 4 that blessing)....therefore no official diagnosis of systemic lupus. Hence, the reason why i'm not rushing to go & see a rheumatologist......they r not gonna tell me anything new!!!! so i tend 2 figure what is the point of seeing them?!?!?!?! Well, guess we'll all have 2 wait & see if i see that particular kind of dr!!! As my world turns & twists & tumbles..........

Thursday, June 10, 2010

Ooooh i 4got...i'm nauseous 2!!! GN
U kno what?!?!?! Anything i was suppose 2 do 2nite won't b done!!! Im sleepy, my lips r swollen, my back & neck i am going 2 bed & i never get in the bed early!!!

Wednesday, June 9, 2010

Swollen painful lips, mouth ulcers AGAIN!!!!!! Hate it!!!!!

Saturday, June 5, 2010

Jus did the race 4 the cure!!!! Omg! My how it's grown!!! I luv the cause & i luv 2 support causes but j think i'm gonna sleep in 4 the cure next yr!! I am pooped beyond pooped!!!!!

Monday, May 24, 2010

Omgoodness!! I cant believe it! This week is an appt free week!! No Dr appts, No school, No adventurers mtg 2 prepare 4, & youth week of prayer (even though it was truly a blessing) is over!!!!! I just dont know what 2 do with myself with all this free time!......oh i know...catch up on my chores! :-(

Saturday, May 22, 2010

This was a very long week!! It never seems like there's enough hours in the day to get everything done & 4 me 2get sum rest. So one or the other usually gets left out! LOL. Well, so far so good with all of my Dr heart appears good 2 go per teh cardiologist!! Yay! Praise the Lord! The lung function test I had showed sort of a pre-asthma status. Basically I need 2 use inhalers, but I hate the jittery side effects. I still haven't had the follow up test with the neurologist ordered. But, rite now I can't help but be thankful for the health that I have. I have a lot of little things that bother me, but compared to what could be happening to me.......There is nothing else I can say except thank You Jesus for your grace & mercy! Well, Gn hopefully my body will catch up on sum much needed rest, bcuz my body is tired & stiff.......catch u next time as my world turns and does somersaults! LOL

Wednesday, May 19, 2010

Hey blog world itz been a minute since i blogged.....well i've been busy of course!!! I just Finished a class i was taking thank God itz over. I'm not taking another course until fall. I've also been busy with church stuff, running an adventurer club, but i have a great assistant whih makes it bareable :-) so my next task that will take up sum of my time will be looking 4 a new job. I need more flexible hrs or ability 2 telecommute or i need 2 work closer 2 home while making the same amt of money! Well i gotta go bcuz as usual...i'm @ another dr appt :-(

Tuesday, May 11, 2010

My friend said on fb the other day that old saying.... So much 2 little time!!! That statement is sooo true! I have 3 papers 2 complete by Fri while working fulltime, fighting traffic 3-4 hrs everyday & of course being a mother!!! WOW Happy Mother's Day 2 me! On the positive side 4 the past 3 weeks i've been walking 2 miles 3 dayz out of the week! Whether or not itz helping me is 2 be determined! Lol. I know the benefits of exercise, in the past i've experienced the benefits, i just haven't started 2 reap any of those benefits yet! Well until next as my world turns.....

Friday, May 7, 2010

BTW.....Itz Lupus Awareness Month!!
So so tired. But i have a few more things i need 2 do b 4 i go 2 bed....

Wednesday, April 28, 2010

As I alwayz say.........another day......another Dr. apt!! Well actually I didn't see a Dr, but this am I had 1 of the follow up test that my Dr ordered! I had PFTs (Pulmonary Function Tests) done. I've been having SOB (shortness of breath) for no known reason, so the cardiologist ordered PFTs. The test wasn't too bad, but they gave me puffs of an inhaler.....which causes me 2 feel jittery!!! I hate feeling jittery......I feel like I'm on "uppers!" 2 ya'll my world turns.......

Sunday, April 25, 2010

This is amazing.......the fact that I am exhausted just attempting to do basic houshold duties! Does washing clothes make everyone else this tired? I worked yesterday (0730-1600) then went to my cousin's wedding. I got to sleep in a lil this am then I got up & started washing clothes. I was really behind in washing, becuz I didn't do any washing last weekend with all of the other ctivites I had going on! Anyway, I had tons of washing to do this weekend, but didn't start until today. I really need to clean up my room, but after washing the lil one's clothes all day, then taking her to swimming, then washing & styling her hair...I'm pooped!!! This chronic fatique is the pits! & it's annoying!!!! As my world turns......

Sunday, April 18, 2010

Whew! I'm beat! This has been a looong & busy weekend! I did the "Walk Now for Lupus" walk in DC yesterday. Then I had to take the lil 1 on a field trip to the zoo 2day. I'm so tired & my joints r hurting like crazy. I've been trying 2 cut back on how much ibuprofen I take, but I will be on sum high doses 4 a couple of dayz until I get this pain under control! Oooohhh my hips hurt! I'm off 2morrow....but I will be plenty busy with Dr appts....again! As I alwayz say......another day......another Drs appt! Talk 2 ya'll next my world turns........

Friday, April 16, 2010

Another day, another Dr. Appt! Echo done. So 1 follow up cardiologist test completed, 2 more 2 go!!! Still having swollen & warm knees! Still dont know what thatz about?!?! & The DC Lupus walk is 2morrow!! Whew i'm gonna b tired. Itz not a long walk, but i'm alwayz tired! Ha. As my world

Thursday, April 8, 2010

My knees r hurtin & feel swollen!!! this mess is annoyin!

Tuesday, April 6, 2010

My appt went well. My BP was a lil elevated but not 2 bad, but as i mentioned i hadn't taken my bp med. He is a very excellent physician. I mean he was empathetic, listened well & overall knows what he's talkin about. I would recommend him 2 anyone.....Dr. Edward Morris. Nothin grossly abnormal jumped out, which is very good. Will still have to have sum follow up tests, but itz all good 4 b con't.......
Well, well, well...another day...another Dr appt! Seeing the cardiologist 2day. My bp has been better but of course of all days 2 4get 2 take my bp med...i 4get 2 take it when i'm seein a heart dr!!! Smh @ myself! Hope i have good results ;-)

Tuesday, March 30, 2010

Well the Lil 1 is on spring break so she's on a different type of schedule this week. Mon-wed @ home w/Daddy, so that allows me a lil free time in eve, when i'm not breaking speeding laws 2 pick her up. So i have time 2 do some much neede pampering, i.e. Mani/pedi, visit my loctician! I was sooo tired though, that i almost didnt go 2 get my mani/pedi, but i forced myself & it felt soooooo good! Now i'm under the dryer gettin my locs maintained, i luv havin my hair washed (by sum1 other than me)! I feel lighter on my feet when my beauty is maintained! Now o course thatz a 2edged sword, bcuz that's 1 of the issues w/ people who have lupus...we don't "look" sick, so people dont understand when we constantly complain about pain, fatigue or anything else! They think we jus like 2 complain or we're lazy or anything else they can think of! Sorry i "look 2 good" 2 be sick, but i am!

Wednesday, March 24, 2010

Blessings flow down on me!! BP was excellent bcuz of my new med of course!! Now i wish there wuz a pill 4 my painful swollen lips! I alwayz struggle durin these dayz of longer sunlite. The sun is usually beamin in on me via my front windshield causing me all kinds of skin distress!!! :-(
@ dr offc 2 day 4 a BP check! It betta b good news! Lol

Wednesday, March 17, 2010

Praisin God that i woke up this mornin. I went 2 bed with A LOT of pain, but i woke up with minimal pain! So letz see where this day leads.....

Tuesday, March 16, 2010

Wow. My knees started bein swollen & reddened last nite!!! Now i have 2 investigate wut could b causin that! Systemic Lupus does cause those symptoms, but of course me "wonderfully, efficient" Drs have not diagnosed me w/systemic lupus, only discoid! Funny how i keep having SLE(systemic lupus erythematosus) symptoms but no diagnosis! Mayb it's the new blood pressure med? As my world turns 2 b con't.....

Thursday, March 11, 2010

Pain, pain, pain!!! My back, shoulders & neck hurt!!!! I barely have the energy 2 get the Lil 1 ready 4 bed! Thankful that she's old enuff 2 do sum stuff 4 herself!!! Smh why me?!?!

Sunday, February 28, 2010

Well, well, well! Itz been a long time since i've blogged. 4 sum reason i've been incredibly busy & when i wasn't busy i wasn't feeling well. But i'm @ the lil one's swim class so i have a few mins 2 blog!!!
The last time i blogged i was on my way 2 have a virtual physical! It was a success, simple easy & i didnt struggle w/ my claustrophobia 2 badly. Itz like have a full body CT scan if you've ever had a CT scan. They gave me a coupla things 2 follow up on. The purpose is 2 scan ur body 2 find any potential problems so that they r caugh early, early enough 2 be corrected. But my overall scan was fairly good no life threatening potential problems! Yay! This last week has been difficult mentally & physically!! A dear friend of mine lost her 16 yr old son, he collapsed all of a sudden after running a coupla laps around the track. I have such profound sadness 4 her & her family. I have tried 2 be there 4 her in every way thru this by planning the funeral. This is something she is not capable of doing emotionally & has no previous experience with. Unfortunately i have lost several loved ones so i do have experinece with planning funerals. So the least i could do was 2 help her family in that way. But, it did take a toll on me emotionally & physically. I havent been sleeping well! Fatigue is definitely not my friend! So, i had a migraine 4 3 dayz. Absolutely awful. Light sensitivity, nausea, pain. It is much betta 2day. But now i'm havin sinusitis issues. There's snow on the ground but the pollen has started, i've been gettin my email pollen alerts, so i guess i can attribute my sinusitis 2 the pollen? I dont know, but what i do know is my throat is awfully sore from postnasal drip!!! Claritin D is my friend rite now ;-) oh i almost 4got my dr started me on blood pressure medicine!!!! I was not happy about this but i had no choice bcuz i had been monitoring my BP 4 awhile & it was not getting better. Unfortunately several meds i take 2 manage my problems & symptoms cause high BP! Cyclosporin 2 depress my immune system so my immune system will stop attacking me....side effect ...high BP! Ibuprofen (motrin) that i take 2 manage my chronic pain....side effect.....high BP!!! Whatz a girl 2 do?!?! I know what i need 2 do......start exercising!! Now how can i work that into my busy life schedule?!?!?! Tune in next time 2 "as my life turns!" lol 2/28/10

Friday, February 5, 2010

Hello all. It's wear red day 4 women & heart Yesterday i had a decent day. Minimal pain, good day @ wk, good evening with my hubby & littlest 1. Did sum shopping 2 get my supplies 2gether so we can be ready 4 a long snowed in weekend. I really wish i had purchased a sled bcuz they r nowhere 2 be found now!! ;-)
Otw 2 have a virtual physical....... Decided 2 take the train bcuz i have no intention 2 be stuck on the beltway when the snow starts 2 fall & these fools start acting like....fools!! That being said, i'm getting in sum exercise 2 day...walking. That's 1 of the perks 2 taking the metro! But i'll be taking ibuprofen 4 sure 2day bcuz my hips were already hurting b 4 all this walking! So i'll check back in later & let u know if this virtual physical is all thatz it claims 2 be!!! Peace b safe!

Tuesday, February 2, 2010

Hey everybody, i started this day with a positive attitude, determined 2 have a good day. Not pain or problem free but positive. Satan thru a rack of hurdles in my way but i cleared them all (i think), despite slightly painful legs! ;-) i woke up with minimal sysmptoms (i took ibuprofen b 4 goin 2 bed). No pain worth speakin of, only fatigue. So the day started well. It has ended pretty well 2 even though i had 2 take ibuprofen).
By the end of 2 day my fingers were stiff & numb. The normal coolness in a office doesnt bother most people, but it causes my raynaud's phenomenom, therefore i have pain. Of course sumone suggested i wear gloves in situations like that! Yea right! I dont see me doin that @ work! It's bad enough that i have 2 wear gloves 2 get thru my grocery shopping bcuz of the freezer/fridge section!!!! I'm a lil 2 vain 2 have 2 go thru crap!!! It allllllll sucks!!! Every last symptom or problem sucks!!!!!
There was a time where i had chronic skin rashes/itching!!! Nothing the dermatologist did helped. It got 2 the point that i would have a flare every month so bad they had 2 put me on prednisone! ( a horrible drug) ginally my allergist came up with a solution......suppress my immune system so it will stop attacking me!! Wth?!?! I dont want 2 take that crap! But after 1 more flare up i warmed up 2 the idea! So approx 6 mos after starting the treatment....i hardley eve itch! Sumtimes i like my Drs. I still hate all this crap!!!!!

Monday, February 1, 2010

Ok. Almost done with my work day. Yay! It was a pretty good day overall, even though i couldn't make all the way through without ibuprofen. Pain isn't completely gone but it's a lil more tolerable. Now i'm hoping for a good evening. Peace
Good morning all. i'm determined to have a good day 2day! ;-) 1st woke up a lil late as usual. It's very difficult for me 2 wake up on time. I have sysmptoms of chronic fatigue, so even after 8 hrs of sleep (which i rarely get) i still wake up tired as if i didn't sleep long enough. But, thankfully i arrived to work safely & ONTIME! Yay! But 4 sum reason walking is very painful 2day. My shins hurt like sumbody hit em with bats. & my fingers are very stiff. But the show must go on. Let me get started on my work. Mayb i'll talk 2 ya'll later.

Sunday, January 31, 2010

Well, I finished the lil one's hair, she's getting in the bed & i still need to iron her martial arts uniform 4 tomorrow. Everything else that i "should" do will get tossed to the wind. I'm gonna relax the rest of the evening. When i over do it, then i suffer the next day, i struggle to get out of bed as it is, but then it takes my body hours to feel fully functional. i'm out Peace.
Well, i had 2 take a nap after shoveling snow, but now I'm up & on 2 my next task! God blessed me & my husband to give birth to a wonderful lil girl. I'm also blessed with 5 step-children, but this littlest 1 is the 1 who actually takes up all my energy! God blessed her with a full thick head of hair! & Satan cursed her with a wicked dry scalp! So now I have to go back to washing her hair every week to try to get a handle on it, if that doesn't work it's off to the dermatologist ;-)
GOD, give me the strength I need 2 clean this snow off my car & shovel me a path! But I will premed with ibuprofen! ;-)
okay....up & at em! Naw, think I'll sleep in a lil longer. Well, maybe i won't sleep, but i'm gonna get back in this bed for a lil while longer. Not feeling very swollen 2day, thatz good. not in 2 much pain @ the moment, thatz good. So, letz see how this day goes.....

Saturday, January 30, 2010

Oh BTW i haven't mentioned my wonderful symptoms of Raynaud's disease, which just happens to be caused by systemic lupus -which they haven't diagnosed me with!- but anyway this wonderful disease causes me great pain doing the basic things in life. like washing clothes, dishes, etc in cold water..whenever my hands/feet get cold I feel severe a simple task of washing clothes turns into a painful moment for me! Just another day in my life with lupus or whatever they want to call it!
Whew...still in sum pain, but gotta keep movin. The bambino is in bed & I need 2 start washing clothes ;-(, so hopefully I'll get that accompolished.
OKAY! Enough already......I'm gonna take sum pain medicine! Now my knees & hands are hurting! & I still gotta feed the Lil 1!
hips, shoulders, arms hurt. whew i need 2 rest!

The Faces of Lupus 2
Alright lil girl I'll take you outside!!!! Well I did get something accomplished, I cleaned the lil one's room with her help of course! Whew! who knew such a lil person could have soooo much junk! But she's been harassing me about goin outside 2 play in the snow. Of course now I need a nap...I'm extremely tired right now...but let me try 2 suck it up & deal with her........
Well, I'm new to this blogging thing. Guess I'll see how it goes. I have a chronic illness called lupus. Supposedly I'm luckier than most cuz I don't have systemic lupus (@ least it hasn't been diagnosed) but I have discoid lupus, which only effects the skin. The thing is......I have a lot of symptoms that are associated with systemic lupus! Yet, I haven't found a Dr that will give me that diagnosis, bcuz my blood tests don't prove it & thankfully my organs have not been affected. What me & sum of my Drs DO know is I have a lot of problems that are auto immune related! Which is what lupus is... an auto immune disease. So I'll just wait around for sum major breakthrough in lupus research & hope the benefits trickle down to me! I'll see where this blogging thing goes....bcuz on any given day I could do a lot of venting on here!!!!

Today I woke up with swollen fingers, that happens a lot. But, I had to get up & get my day started cuz my hubby isn't here (out doin a favor 4 a friend of his) & I have a hungry 6 yr old breathin in my face! So i gotta get up & try to b functional. Then i look outside & see all of the beautiful snow comin down! WOW, didn't expect to see this much. Now i know it's goin 2 be a long day of "mommy can we go outside & play?!" Hope i get sum energy by the time those questions come. None of my other kidz are home 4 me to push her off me on to them! LOL Oh well, I hope i get something productive done since i'm stuck in the house. very often on a day like this I'll sleep & get nothin done...we'll have to wait & see how it turns out........oh 1 good thing so far blood presure was normal 2day! YAY. it's been very high lately & i keep monitoring it bcuz i think it's 1 of my medications causing it 2 rise. But we'll see how that turns out also.