Wednesday, April 30, 2008

i feel better -but tired as usual - knees still tender and weak- elbows hurt -and feet too-thats about it,for now,im in a real "secluded" mood,,"withdrawn" and "numb" feeling.. just dont feel like typing for some reason,i feel parilized and UNmotivated

Tuesday, April 29, 2008

its midnite,,opps i mean 1.45 am,,, i woke up for some reason? and got up to check ont he cats,,bo was out on his stoolthingy- and E..OMG sittin RIGHT smack in the middle of the loveseat and HE KNOWS BETTER-the smerk on his face too when i cuaght the little fuc*#$ right there like "busted" i just could not believe my eyes, well,,i swated him off the sofa and told him to be ashamed!

our weather is UNseasonably COLD!!!!!ive never seen it this cold so late in spring..weirdweather.
~now im up and its 6.00 am,,made coffee,feeling "pretty good "-at 6.15 the alarm will go off and UG!! i hate that noise!
we will get kllcake of to POE then im not sure whats on the aganda 2-day but i have a feeling its gonna be alot -lets just wait to see
i went ona mission today and napped earlie so i could get the wallmart and the money order all done before kelly comes home - i must say i do feel better, but still quite tired ,,im ready now to go to bed and the sun is out and its 6.30pm,,,i swear,,id fall asleep if i lay down.

Saturday, April 26, 2008

its a sunny but chilly (WEIRD WEATHER) this Saturday at noon,,Kelly's napping now- and thats great!shes really tired after 50 hour work week and school on top of that-economics class week 4..almost done!
i got up at 6 to take prednisone (20mg as normal in AM now)
then messed around for a while,,then i got so sleepy and went back to bed until 8.30 am,, i again came back here to mess around on the computer for awhile then my elbows started to bother me..they always hurt,,,but sometimes it gets to be too much- ~so i took a darvon and passed right on out again,,now im up and feel OK AND ITS ALMOST 1.00 PM,,WE HAVE SUN,,,BUT ITS CHILLY OUT AND i dont wanna wake kelly up or have her do anything-until she has rested her-self enuff.

i feel mucho-better today coming off the Neurotiin and its about done with, i have not had a "N-Pill" for sometime (days and days seems like) and i feel like the sleepiness and other side effects have left as well,,like my swelling in the face,,is decreasing among other things,, my abdomen is not as tight and swollen either! waking up seems easier and everyday gets a touch better ,,and i last alittle longer thru the day,hhhuuummm,lets hope this continues...pray2godinthenameofJesus!

Friday, April 25, 2008


`friday started off wrong`
got a letter from state about foodstamps,,saying they will cut me off - due to improper filling out of the returned form
dropped kelly off then went down to talk to them- again they were very nice and informed me ,,that they just need kelly to fill out her disclosur form and they will re-instate my foodstamps,,OMG we could not make it with out them.
god,,i keep wishing i could JUST GO BACK TO WORK -so i can get what i need.
after i got home from 444 south houston,,, i wanted to defrag for awhile and and zombie out until my nerves become stable.....
*note; looking less swollen now- but lookin alittle stressed ,,cuz i am -damnit

Thursday, April 24, 2008

its 1.00 am in the morning,,i woke up ...a storm is moving thru and the thunder is intense - i should probably turn off these computers,,but,,,,by that time the storm will be over, so im blogging instead - i went thru Yestersday feeling a little better then the day before,,im totaly off the NEUROTIN and feeel like its leaving my system day by day,,i feel more and more normal,(well-normal-thats a cycle on the washing maching) what mean is i have much more energy and not so whimpy or depressed and cold to the core,,
also,,i told kelly that im so embarressed aBOUT the way i look, its so,,so,,prednisoned - and ive really changed,,OH and Kelly pulled a GREY hair right outta my head yesterday ,,it was gray and i DO mean G-R-A=Y,,no passing off as a blonde hair ..omg so 1st i get RA then Early-menopause NOW im getting grayhair, this is not happening to me,,tell me NO-i cannot accept these things

Tuesday, April 22, 2008

~swollen hands~

just wondering WHY i was CURSED with this disease
IM just about sick to DEATH of waking up in pain goddamnit
my knees are now being atacked ..they were fine before,,for all this time,,NOW THEY hurt and i cant walk very well,
i do have a bunch of small bumps,(nodules) on my arms both sides around the elbows and along the boney part - just makes me sick ...sick sick
im havnig a real hard tme this am,,i started to think about dr Kusi agin and it made me cry, but i try to keep all that shit under control- very very bothersome to me tho ,,my soul is truely bothered by the INSENSITIVITY of MOST human beings - i get so afraid of whats gonna happen tomorrow-but screw tomarrow i just gotta make it thru today- my hands are so swollen and i cant type anymore now-
it is NOW 9.00AM, i feel mucho better now,BUT i have to take 2 darvon 2 cut the pain where one used to do it,,, each pill is 65 thats 130 mg of darvon to kill much/most of the pain *includig elbows feet/hands and now my knees too

Monday, April 21, 2008

my arm/skin is reaaal bad - this is after JUST SCRATCHING from an itch - NOW this is NOT a normal thing,,i just dont understand why this is getting so bad- here comes summer and im scared to show my face in public, i sure dont want to have my arms /skin showing like this,,, OMG!

its monday,,the weekend was slept away, i just did not want to do anything - i was so swollen and RA'd out - i did not spend any time here at the computer. (had sinus headache from hell) i am so damn tired all the time, and now my hands and knees are bothered by the RA - its been along time since i felt RA in my knees - its back again costo still there ..feet hurt and i have slight swelling in both hands and wrists.

Thursday, April 17, 2008

its THURSDAY afternoon,rainy,64.degrees.
Ive been only now able to say "I'm actually feeling better" after such a LONG time.
but internally i still feel real swollen and tender.this swelling of my abdomen occures for about two hours after i wake up-then just kinda goes away -
i am starting a collection of photos to show the effects of 900 mg a day for over 2 months of NEUROTIN and how it effected my swelling in face and abdomen and my endurence was so down as well as my ability to just stay awake for more then an hour-
special note :TODAY i started with my OLD WAYS> i took all my pred in the morning and not split it like "Kusi advised",,, this way i may have more endurance and I WAS DOING BETTER that way,,so whatever works for now---
the past 3-4 days ive been so RA'd - SO tired and unable to do anything much at all- kelly has bee real supportive and strong as i totally have been hurting and just having a hard time adjusting to this switch in medication,, prednisone is just so hard to mess with,, one difff
( splitting the dose KUSI said to take 10MG at AM and ! 10mg in PM instead of my usual 20 mg every morning, ,, NOW im outta energy,will post later....

Tuesday, April 15, 2008

had bad thoughts/dreamslast nite untill about 1.00 am -2.00am,,kept thinkin bout the doctors who jhave just completly blown me off now,,WHY >? i do everything they tell me to do-i try to be a good patient and just go along (i try to be a sport about it all),,BUT its all fucked now-its really haunting me about MORTON & doctor Kusi who i only had good trust for,,but now,,i dont fit his mold so to speak,,in other words,, the Neurotin is not agreeing with me at ALL,,,and he was pissed off or bothered,, that i want to discontinue NUROTIN MEDICINE used to treat = Neuropathic Pain.
------and what causes this ??? -------------
symptoms of neuropathic pain?
Neuropathic pain is a complex, chronic pain state that usually is accompanied by tissue injury. With neuropathic pain, the nerve fibers themselves may be damaged, dysfunctional or injured. These damaged nerve fibers send incorrect signals to other pain centers. The impact of nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury.
~side effects that I HAVE from NEUROTIN; Neuropathic Pain
Body as a Whole: Infrequent: chest pain, vision imapaired,
Respiratory System: Frequent:
dyspnea, which i had to look up= Dyspnea or dyspnoea (pronounced disp-nee-ah, IPA /dɪsp'niə/), shortness of breath or shortness of breath (SOB) is perceived to be difficulty of breathing or painful breathing. It is a common symptom of numerous medical disorders.
Dyspnea on exertion (DOE or exertional dyspnea) indicates dyspnea that occurs (or worsens) during physical activity.
OK NOW,this sounds aLOT like what IM calling"costo-congitus" real spelling is costochondritis, Rare: nasal obstruction,snoring,bronchospasm,hypoventilation,-kelly said i snore like shes NEVER heard
Special Senses:Infrequent: abnormal vision,ear pain, eye disorder taste perversion(wha?), deafness; Rare: eye pain,taste loss. Musculoskeletal: Infrequent: arthritis, arthralgia<-again had to look this UP=Arthralgia: Pain in the joints, OK great give the RA patient some medicine that will agatate my JOINTS~! god-i NEED a JOINT! after all this shit!
myalgia, arthrosis, leg cramps, myasthenia; Rare: shin bone pain, joint disorder, tendon disorder.
Nervous System: Frequent: confusion, depression; Infrequent: vertigo, nervousness, paresthesia, insomnia, neuropathy, libido decreased, anxiety, depersonalization, reflexes decreased, speech disorder, abnormal dreams, dysarthria, emotional lability, nystagmus, stupor, circumoral paresthesia, euphoria, hyperesthesia, hypokinesia, suicide attempt; Rare: agitation ...ohhh yea souhnds about like last week BEFORE i decreased the dose.
he claims all the facial swelling is PEDNISONE,,again WRONG DUDE this is NO effing prednisone and HOW EFFING LONG do i have to walk around holding my heart chest area for the pain of it all-????? WTF??/ this "costo" wont leave me at all,,i feel it get better, then sometimes its so bad i cant breaTH at all with OUT my Klonipin i dont know what id do - IT SCARES ME- KELLY'S ADVISE 4 today WHEN I DROVE HER TO WORK THIS am,,, (good advise fer sure):THINK POSITIVE AND PRAY FOR THE LORD TO LEAD ME 2 HELP- OR THE HELP TO FIND ME- EITHER WAY,,I FOUND A NODULE AND I HAVE TO LOOK IT UP NOW on the internet-,,(ON MY ELBOW RIGHT-SIDE)

BACK from looking UP NODULES OMG!!!!! look at this,,its all comming together NOW;
What are rheumatoid nodules?

As part of the rheumatoid process, firm, non-tender, subcutaneous nodules develop in about 25 percent of rheumatoid arthritis patients. These are commonly found at pressure points like the elbow,(HELLO!!!!!) back of the forearm, and metacarpophalangeal joint. Nodules usually occur in chronic active cases of rheumatoid arthritis, and are commonly associated with more joint deformity and serious extra-articular manifestations including lungs, eyes, and blood vessels. Nodules may vary in size during the course of the disease process, according to Raymond Federman, M.D.

Complications of rheumatoid nodules
Johns Hopkins claims complications of rheumatoid nodules include:
limited joint mobility <-shit no good-
neuropathy <---THAT WORD AGAIN!!!!!!!!!!!!
ulceration <---wha?
fistula formation <----wha?
infection <----whatever!

Monday, April 14, 2008

look at this sign of the times,, I SWEAR TO GOD we R in the END of times...
may Jesus care after me and you!
taken from today's NYT,,(liberal,but)


Co-Payments Soar for Drugs With High Prices:

With the new pricing system, insurers abandoned the traditional arrangement that has patients pay a fixed amount, like $10, $20 or $30 for a prescription, no matter what the drug’s actual cost. Instead, they are charging patients a percentage of the cost of certain high-priced drugs, usually 20 to 33 percent, which can amount to thousands of dollars a month...

The system means that the burden of expensive health care can now affect insured people, too.
No one knows how many patients are affected, but hundreds of drugs are priced this new way. They are used to treat diseases that may be fairly common, including
multiple sclerosis, rheumatoid arthritis, hemophilia, hepatitis C and some cancers. There are no cheaper equivalents for these drugs, so patients are forced to pay the price or do without.
now i ask YOU> is it worth having INSURANCE NOW??? my god,,i was so upset for NOT having insurance 2 treat my RA BUT NOW,look,im just not so sure anymore
~besides,,all DMARDS cause cancer (lymphomia)
im LEFT with natural cures and a prayer.........
deformaty is occuring slowly to my feet and hands after 6 hard-core painful years. how much do we endure ? i guess as much as we can- then takea pill!
who is this??? im not sure...................................................................................... feelingVERYmenopausal today-sniff-
noNUROTIN (AM dose) today
heres a movie of me now-

Sunday, April 13, 2008

today=sunday-cold weather -very unusual 4 this time ofyear

Saturday, April 12, 2008

every doctor has said "its the prednisone "/this doesnt even LOOK LIKE ME/ why did it start 2 weks after Neurotin then eh? they refuse to listen,they all say it is prednisone storeing it self up and causig the pufffyness - OK explain the red flushness of my upper then? ahh no reason for that???,,OK then what about the costo,,
ive had it from march 1st,WHY? Oh no answer again,,,,wow,,we r getting nowwhere fast,,shoulda just fucking stayed HOME -how fustrating when at first a doctor acts like hes gonna help ya,then he acts like he doesnt know you from fucking adam,,he actully asked if i had insurance,heknows i do not have insurance why did he do that,,i flagged that comment,,it came at about the end of thedeal when he wanted to wrap up things,he basicly said go seee mckay then come back hre,,se what they say- like i can afford that,,he doesnt want me there,,thats why,, HE didnt do that befor hussien doctor, now he thinks im more trouble??? i cnat go back there,, im so embarressed -
omg it was somethng i felt by him distancing himself and what to do about anything at all waass liike differnet and no support,,he threw me under the bus so to speak -he was vauge and im really sad now- hers how i just woke up alittle bit ago=
its in the middle of the nite. i could not sleep again,i awoke to bad thought of MORTON,(i went there today)- in my dream they are all laughing at me and sayingthings like school children would tease a kid,,weird, then Dr KUSI patronized me and tht was it,,it musta really upset me cuz i woke up with a damn tear and had to spring outta bed on soe RA'd out feet,,these past 2 days have had me emotionally wrecked and im still under the spell of the morton burn as i swear to GOD that DR kusi blew me off today, or aleast he didnt seem to be his supportive self,he didnt agree with theneurotin side effects i have EVERY side effect including the constpation -facial edima,-i learned that means swelling- the doctors all say its the prednisone-i say "i disagree" because i have been on a much higher doese and never have i been this big,, it all started around the neurotin 2 weeks into it- HEY it helped alot at first,,i was sold on it completly- i was OK by talking it,,BUT things grew worst and i missed a dose and felt better after missing that does swelling went down too- so i KNIOW then neurtion is not doing me any good, i was falling down, confussed , seeing things outta my prorifial vision and skin-delicacy is worst then ever,,, flush- face and "temple and top of my headache" consistanly, VISION POOR as hell too, god the list goes on
COSTOCONGITUS started to worrie me tho,it wont go away,

march 1st and sent me to morton (saw JUJU) no help, but bloodtests were done ad i NEVER heard a THING about them,,tho we sure n hell had to pay out the ass for them,,-

Next i schedule an appt w/only dr Kusi- went -no dr KUSI saw the "islamic" doctor-hussien? or whaTever , -he blew me away - SUPER patronizing & said he cannot help me,,im in need of a rheumotoigist and DUH!? LIKE WEONT already know that - we were so disapointed and left with a bad feeling ~
It set off a chain of events that just sent me into a complete meltdown -it was the end of outr line and now thats gone, ruiened by patronizing doctors who dont know anything else but DIABETIC and depression patients- - god if you arent in the "mold" they dont wanna mess w/ you ---i dont think dr kusi wants to see me there like he did before,,i think that DR. huussen ruiend it for me-he put something in my chart/ folder b/c DR . Kusi left for long time and looked over my chart-he seemed patronizing when he came back- he seeemed diffferent - i cant pin it- i didnt think then at the time - i was very cooperative and OK to talk and had all my dates with me, ,,i think it in retrospect,,looking back,i see that when he left ,,then came back -
POST from middle of then nite=
dr kusi acted weird to me today, and thats why i cant sleep and WHY im here right now 2.20 am-typing away ,,as myheart pounds right outta my chest from fear of not knowing what or where im gonna go from here,,but im not with a good feeling on this,,Gulp!.

Thursday, April 10, 2008

all i can say is i wish i could spend my days sleeping,it isnt much of a life but its the only way i can get away from allllll of his S-H-I-T! aka PAIN /im so effing tiered of all this, if i cry kelly gets upset/ if i try to just sit here..i feel miserible-i am just crying on the inside-,, i hate my RA HATE IT--- ITS so so unfair,i hurt real bad this morning and i could not get up.BUT I HAVE TO, i cant let this shit beat me,,i got up and im pretending all is fine (i do that alot) but my soul hurts ,,,along with my bones, im so depressed, nothng is working for me, i hate my life now,, i used to be so happy,,im not any longer/im just in serious pain,,and it drives me crazyinsane to tears

Saturday, April 05, 2008

before AND.......................................................................

after with no treatment and falling thru the cracks of the system.....
red sploches all over me and swelling like crazy
~ that doc (islamic-he was middle easteen scary) HE said the face swelling is from prednisone,, prednisone! WRONG DUDE!! ur NO effing doctor-wtf? its the NEROTIN,and im quitting it on my own ,,,because they wont listen ,,i decresseed by one dose (300 mg,),(( down to six hundred miligrams aday now )))

ALOT has happened nd i dont feel like typing about it, i feel depresssed to the core,,i have costocongitis SO BAD that over 15 minuets off the heating pad from my chest allows the pain back it feels like a gunshot to my heat and i feel the EXIT wound - meaNING it is painful thru the entire heart area - like a gunshot to the heart,is the BEST WAY to describe it. im not real pleased with MORTON clinic like i was before,
kelly and i went out to keep my appt with doctor KUSI- he was not there,,i was afraid not to not see a dr. b/c of the heart- chest -pain- thing again,, this doctor that i saw was insulting aS he said hes only a family doctor and he cannot do any thing but say i need help and a rheumatoligist and to help with depression - DUH thats SO 5 years ago DUDE! i have a issue with my NEUROTIN i need to tell you about these side effect,, he dosent hear a word - instead he talks about my prestriction as a whole,,i followed and then says i filled my klonipin 2 X illigally at reasors,, he had a printout,,i wa s like wha??? first of all we dont fill klonipin at reasors,,so u r mistaken - he wrote a script for prednisone saying thats all,and left,
he thought we were drug seekers,-all they have doone is taken AWAY not given,,, hello,,if we were drug seeking why would we come back, OH im such a druggy, im on neurotin, and pred and cymbalta and lamisil (for my thumb ) and the klonipin and darvon are the only thi8ng i really have to say are something to keeep an eye on ........
i was so upset and it spun my lil crazystaw brain right into a fizzy and into days of confusion an
horror,,i have felt shitty aND still do -my heart i s heavy -sad- i never want to back out there again- EVER!
about neurotin,, info on bottom page shows all the side efeect and i have had them all

shows this:
Body As A Whole: Frequent: asthenia, malaise, face edema; Infrequent: allergy, generalized edema, weight decrease, chill; Rare: strange feelings, lassitude, alcohol intolerance, hangover effect.
shows this in the side effects for RARE =
Rare: costochondritis, osteoporosis, bursitis, contracture. they would NOT liastwen to me at all,,they would not treat me nor did they document that i have costo in the worst kind of way- nothing we paid for absolutly nothing andf we were very upset, dont knw what im gnna do now,,other then pray,,just pray,,i need a fucking rheumatolistist,,these doctors cant help me at all - nor do they want to,, im about to cry right now,,i dont know if im going tocontinue this blog,i feel more and more depressed im so screwed i wantot just WORK and BE NORMAL goddamnit!

Tuesday, April 01, 2008

3 days wuith the heat-pad on my chest
kelly and i saw the pain go internally from my lower organs up with swelling to my upper area- it just spread from lower to upper attacking hte shit outta me internally
i told kelly i have had RA in the spine andi have not complained about that for some time now,,and it now is up front - see it travellels sooo now its in my chest bones in one area over my heart - i could barely breath for 2 whole days
today i see dr Kusi at 10.00am
its 5.45 am i awoke at 5.20 and THOUGHT it said i got up,,and out of it,,,walked out to the kitchen and started the coffee,,,,,i SAW THE FRONT DOOR HANGING WIDE OPEN,,
i was like,,wha?
then it registered,,OMG! the DOOR OPEN! we could have had anyone just walk on i and us
and i also worrie about the cost ,,all that heat going out the FRONT DOOR! we cant afford that-
effing BOOBOO did it -im sure! -he has learned how to open the door on his own-
im so not happy about that,,so the front door was NOT locked before bedtime last nite,,
*major fuckup-must be more diligent-omg. gulp no tellin how LONG that door was open-shit!

so its TOO early for me to be up- i should have gone back to lay down,, i cant believe my eyes saw the clock all of the clocks at 6.30 am instead of 5.3.0 im really loosing my vision now- **can barely see to paint my flowers at all ****