Is today your birthday?  I know this year is one that you'd probably hope to forget.  But at least we can hope that on today, on your birthday, Birthday Man can come and cheer you up a bit.

Who can't laugh at a guy wearing pink tights, wearing a crown of burning candles and dripping icing all over your floor, right?

At least it will give the dogs something to bark about.

Here's hoping that today will mark the end of a lousy year, and the new beginning of a year ahead with remission ahead and a lot of days of feeling a hell of a lot better.  Whether it is your birthday or not, lot of love and well wishes for the year ahead.

Hugs,

Cath and Birthday Man

I am feeling fine (just some joint pain, completely tollerable) and would like to go about my normal activities.

What do people normally experience in a "flare up"? What causes the flare up - is it an attack on one's organs, or just an aggrivation of the symptoms (ie join pain gets worse)?

Should I avoid the sun? If so, is it only direct sunlight I should avoid - meaning, is a hat and staying in the shade okay? I've never experienced any coorelation between time spent outside in the sun and join pain.

Also, if you could reccomend a book to a newbie like me, which one(s) would you choose?

Sorry if my questions are so jumbled - my head is still spinning with all this new information. I hope I'm posting this in the right forum...

Thanks!

-Debi

I could also teach you how to down load pictures as well sometimes using the chat room to talk you through the steps.

Just click on the Lupus Cafe under Dar's siggy and I"'ll meet you there.  My speakers don't work so I won't hear if you log on.   But I will check in regularly to see if you have arrived.

Hugs,

Cath

So, now I get to go to work and say "I walked into a door". Yeah, right. And wouldn't you just know it, I work in domestic violence. I can seen that one going down really well - not!

Oh well, I can expect a lot of leg pulling at work tomorrow - I do look like someone punched me in the eye, and, well, it's the oldest excuse in the book ....... 

Raglet

btw, my new avatar is my daughters cat Sammie pestering Tommy, our golden retriever. When Sammie gets bored she likes to lie in front of him and slap him around a bit (no claws), and in this photo she is poking and proding at him. He doesn't seem to mind. When it gets cold, she sleeps on top of him to keep warm, which is rather cute.

I just had to get this out b4 I made my way to sleep writing you guys always gives me some reliefe and some of my sanity back that is for sure

And just realized Trish H. hasn't been in in awhile........

Who else we missing?????

Yesterday I took the dogs for a walk in Cornwall Park - I LOVE Cornwall Park in the spring, all the daffodils in twin Oaks Drive, the blossom on the trees and of course all the baby lambs. So cute. It an on leash place because of the sheep and cattle, but the dogs love it anyway. They get so excited when they realise where they are going. There is a volcanic cone in the middle of the park that I used to climb with the kids when they were little, and I was still able to do such things.

I found a u tube video of someone walking their dog in Cornwall Park in Spring - they go most of the places we go, though I take another route to dodge the stairs (and I wouldn't let my dogs sit in the middle of the daffodils!).

I felt a bit guilty having such a lovely day when all the people in Christchurch were in Day One of the earthquake, but really having me staying home and being miserable wouldn't help. They are having it rough today - the weather has cut up rough with wind gusts to 120Km, so there is the concern that more of the weaken/ half demolished buildings will come down.

Thinking about all the Cantabrians out there - a lot of them are still without water and power.

Two of the neighbors collected his cell phone and personal items and gave him his cell phone.  I asked him if he wanted us to call anyone for him.  He said his xwife.  So...he scrolled through, got her on the phone, then I talked to him for her.

Apparently, it was at that time when I got the mans blood on me.  Needless to say, I had an open cut on my hand and got the mans blood in it.  When running out to help him, I never once thought about my safety.  Needless to say, we found out that the man had AIDS.

The police told me I needed to go the VCU Medical Center (50 miles from where I live) to get tested and treated.  I did and took the treatment.  Later that night, I began throwing up really bad.  Threw up almost all night long.  Missed work on Monday because I was feeling so bad.  Then, I called the pharmacy to find out how much the prescriptions were that I was to take for 28 days and it was $1200.00.  I freaked.  Everyone kept telling me about the Good Samaritan Act, that it would pay.  After spending all day on the phone, I found out it would pay for testing my blood, just not for medication or the hospital bill.

Thank God, my doctor called me and she put the hospital visit into the system so my insurance would pay that and she put me on a medication that I could take for the next 28 days which was only $25.00 to me.

Each time I have to take the medication, it makes me feel so bad.  I almost cannot function for about 4hours after it starts to take affect.  Usually it's about 1-1/2 hours after taking it.

I also believe that all of the stress of the medication and situation has brought on a flare, both with my lupus and sjogrens.  I am really having a tough time.  The only good and positive thing is that there is only 1/2% chance of contracting AIDS.  I still have to take this medicine for 3 more weeks and feel like this which is really BAD!!!

Also, I finally got to go to see an orthopedic specialist about my neck & shoulders that I have posted about before.  He did an xray and looked at my older CT scan and said he could not believe my other 2 doctors missed all of this.  He said I have arthritis in my neck, I have 3 compressed vertebres and have a bone spur the size of a 50 cent piece on the left side of my neck and a bone spur on the right the size of a dime.

No wonder my neck and shoulders hurt so bad.  He also said that each test showed major swelling which I have been complaining about all along.  Today I can hard move my head to the left, let alone hold it up. I am in so much pain with that, now a flare too!!!! Uuuuugggghhhh!

Thanks for letting me vent.

I can try to find a part time job, but then the health benefits will go away, which I really need now.

My question is this: What do you do for work? Are you on disability? If you work part time, how do you get health insurance coverage?

I'm seeing alot of blue folks around here lately.

Hugs to everyone!!!

Hope we get to feeling better!

Well for some reason my mouth (which is horrible, i only have like 7 of my upper teeth and of those 7, 4 of them have crowns on them) and my front top tooth has a cap and is all alone no tooth on either side and of course that started to hurt and my gum is now pullling away from the tooth. So i went to see my dentist, well she called and canceled her day and since i had alrady drove the 1 hr i said i'll se the other one. Talk about bust, she wojuldn't listen she jsut told me it was dry mouth and to use dry mouth stuff eventhough i told her that it makes it worse for me she told me that no way it can't make you get dry mouth.  then she said i had some pre cavity thing going on but said i would be fine and jsut let it turn into a cavity and they would fill it at my next check up, so Im going back to see my dentist next week and get that taken care of.

Then i went to teh eye doc today thinking that i would get new glasses and things would be better, well my vision is worse but they cant fix it since its from the pesudotumor cerebri (increased pressure in my brain whcih my new rheum thinks is due to the severe cns lupus), I was able to hold it in til I got to the car and tehn I just lost it and started to cry. Normally i deal with things really well but its just like one thing after another and now Im having second thoughts about even doing the cytoxin right now.

Sorry for the rant and thanks for all the suport

I just started on Planiquil and I know that I wont be feeling any relief yet but I am more tired then I was before I started the meds and now I am starting to get this sharp pain in my head I am not sure if its the meds or is it something more I applied for disabilty because my doctor dosent think I should work because of the joint pain and how tired I feel no matter how much sleep I get I sit sometimes and my my wonders to all the possibilites of this disease my doctor tells me its skin only none of my organs are being effected and that there are very few cases that if it starts like mine that will ever. Having three kids and a husband to take care of is hard when I hurt so much  I try to stay up beat because I dont want my family to worry so much but my husband can read me like a book and knows when I am in pain. What makes me more frustrated then anything is when his mom comes and tells me what I should and shouldnt do I know she is just trying to help and all but I really dont want to hear things I already know and in this family I at times feel like I am fighting this war by myself its fuuny a war when I think of it that way its what it is a war my body is all crazy and I brake down at least once every couple of days. My  husband has been a great support to me he makes me laugh and always says I love you when I just blow up we are learning to cope I am so new to this I never in a million years thought I would be told I have a disease that I wouldnt be able to enjoy myself outside but this is my new life I will learn to adjust......sorry this ended up being a blog on me venting but when you feel alone sometimes and all you have is a three year old and a dog with you they really are not real good at talking back or listening much love to all

This summer has been tough.  After working all day, I have come home crawled into bed and just slept til morning.  Weekends I get up with a quick burst of energy, only to end up back in bed for most of the day.  I ache so bad, the mouth sores are awful, I am so tired, I feel confused -like things don't make sense, even my mouth, face and teeth ache.  How can just driving in my car make me so tired, or even just showering.

The last three weeks have been the worst, I don't think I have felt this horrible since before I was dx.  I went to the dr on Monday after realizing that this is one of those times that I could not just sleep it off.  She put me on Prednisone and gave me darvocet for pain.  Here it is Friday and Im still in bed.  I have no energy, I hurt all over, and all I do is sleep.

Some of you talked about how when you were in a flare that you liked to read, take a bath, or watch tv.  I truely feel I don't have the energy to do anything.  I went to work for 2 hours this week and thought I was going to die before I got home.  I climb back into bed and sleep for hours at a time.

When will this pass? Should I go back to the dr?  This is the worst feeling in the world and its so hard to explain it to anyone but those reading on here.  I hate missing things with my kids and family, I hate feeling this way, I hate having lupus!

Lori

So, I just want to vent and tell you that I'm very afraid that I am just wasting my time and money going to, yet ANOTHER doctor, who will just tell me, "nothing's wrong with you..kindly leave my office" (maybe not in so many words but you get my drift).  I know Cath often mentions not to worry about a diagnosis, but I just want someone to try some meds or something for me!  So far, I've seen drs be very reluctant to do that without positive labs and/or diagnosis.  I'm so tired of feeling this way!  I just want help!  I don't care if they want to call it "monkey-disease", just give me some damn monkey pills then!!

Anyway, just needed to vent.  You guys are the only ones who really know what this is like.  My DH is great, but it's not the same as venting/sharing with others who totally understand. 

Thanks for listening...any tips would be great.  Like, how best to approach things with this new Dr..??

      My meds for lupus are Cellcept 3000Mg (yes-3000mg), Plaquenil, Meloxicam, Nambumetone, ]]> http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=10&threadid=9777 2010-09-02T05:57:15 -05.00 clotsalot 2 From Medscape Medical News

Black Women With SLE May Develop Cardiovascular Disease at Earlier Age Than White Women

Laurie Barclay, MD

August 26, 2010 — Black women with systemic lupus erythematosus (SLE) may develop cardiovascular disease (CVD) and die of CVD at an earlier age than white women with SLE, according to the results of a study reported online May 6 in Arthritis & Rheumatism.

"In female SLE patients, we found a 9.6 year difference in age difference at time of hospitalization for CVD between black patients and white patients (mean age, 63.5 years)," said lead author Lisabeth V. Scalzi, MD, MS, from Pennsylvania State College of Medicine in Hershey, in a news release.

The goal of the study was to assess potential racial disparities in the age of onset for CVD and cardiovascular mortality in patients with SLE, using the 2003-2006 Health Care Utilization Project Nationwide Inpatient Sample database. The investigators identified 90,444 hospitalizations for patients with SLE (89% women) and approximately 19 million for patients without SLE (61% women). Among patients with SLE, 55% were white, 28% black, 12% Hispanic, 2% Asian, and 3% other.

The investigators calculated the age difference between patients with SLE and their race and sex-matched control subjects when they were hospitalized or died of a CVD event, as well as the age difference for the same outcomes for white patients with SLE and sex-matched control subjects for each minority group.

At the time of the CVD event, the mean age difference between women with and without SLE was 10.5 years, and all age differences were significant between women with SLE (n = 3625) and those without SLE (P < .0001).

Of all female SLE racial groups, black women had the youngest mean age at CVD admission (53.9 years) and at in-hospital death related to CVD (52.8 years; n = 218). At the time of CVD-related death, black women with SLE were 19.8 years younger than race and sex-matched control subjects.

"More than half of the black women with SLE who died of CVD were younger than 55 years of age," Dr. Scalzi said. "Most startling was the vast age difference between patients with SLE and their age-matched controls at the time of CVD-related death: black women with SLE were almost 20 years younger than black women without SLE (52.8 versus 72.6 years of age)."

For black women, admission trends for CVD were reversed in that the highest proportion of this group was hospitalized before age 55 years, but this proportion then steadily decreased across age categories. Among 805 men with SLE who were hospitalized with CVD, black and Hispanic groups were the youngest. At the time of admission for CVD, men with SLE were 5.5 years younger than men without SLE, and at the time of in-hospital mortality from CVD, men with SLE were 11 years younger than those without SLE.

Because many risk factors for CVD are modifiable, such as smoking, obesity, and hypercholesterolemia, active risk factor management should target women with SLE, particularly young black and Hispanic women with this disease.

Limitations of this study include lack of information concerning SLE severity and duration, medications, and whether a CVD event was a first event. In addition, not all patients with SLE may have been captured in the database, and not all patients diagnosed with SLE may have met clinical criteria for the disease.

"Studies in ethnically diverse lupus populations are warranted to examine the success in addressing risk factor management and barriers that may hamper effective management efforts," Dr. Scalzi concluded. "Prescription habits, adherence to prescribed therapy, awareness of heart attack warning signs, and appropriate management of acute CVD events should also be examined for any racial disparities."

The National Heart, Lung, and Blood Institute supported this study. Two of the study authors have received grant support from the National Institutes of Health and Pfizer.

Arthritis Rheum. Published online May 6, 2010. Abstract

Great. Another 'itis' to throw into the mix. Where's Amj when you need her? Guess I'm taking this one for the team, huh?

Feel behind your ear, that bone that raises up and runs along the skull behind your ear...that is your mastoid. Mine, ...both of them....have an 'itis', a bacterial infection that is in the BONE. YUCK!!   But really more than YUCK is HOW??

My doctor said Oh wow, you are really rare.

Really. Like I've never heard that before ( Chemical Meningitis from motrin, for example) Enough of the accolades of my uniqueness.....

I asked him "Ok, so I have this junk. What if I hadn't had that MRI, what if I didn't know about this and didn't treat it?" His response was "Oh, that's easy. You would get very sick pretty soon and the infection will go straight into the brain and you'll have severe case of meningitis as well as probable hearing loss and visual changes. Ready to take some medicine ?" 

Yep.

Finally get out to do inspections - got to meet my required inspection numbers for the month and today is the last day- needed 3 more ...

first one goes fine, second one goes great then go to put the report on the desk of the manager and slip in some water and do the splits and bang my left elbow and shoulder on a hand sink and land on my left knee and twist my back. in  good amount of pain at this point but still need one more inspection so i go to an elementary school and do an easy inspection go back to work, grab my personal car keys  tell my supervisor i am going home for the day don't even give her enough time to tell me no come home take pain pills and pass out.

really this year will be know as the year of health issues for my and my hubby. when will it stop!

I know how confusing, lost, depressed, alone, frustrated and all the meloncholy that comes along with going through this tough time in our lives. I am here to show you there is hope, and it may not be a big donation but its the little things and thoughtfullness of others that matter.

I am only 22, and I have been stuck in a workers comp case since I was 19. As of last week they were trying to have me come in for a hearing, claiming that I was 50% disabled and I could return to work with my restrictions raised higher than what I can  actually do. This position they were tryin to make me work was a  position last year I had been pulled out of doctors ordered because it was decreasing my ability to heal. I then had another surgery and did not return to work because they wanted me to work the same position and refused me jobs that I could perform. I kept applying for positions I knew  I could perform. They "voluntarily resigned" me from the company because "I did not show interest nor work 90-100  hours within a 6 month period". But I had called and called and went to  interviews, the HR REP denied me positions when people called. I filed  for unemployment and they fought it, saying I never called. I represented myself at the hearing and won.

This passed week, I started school. I called into my hearing last week because I was sick with lupus n high BS and also did not have all my information gathered that I wanted to bring to attention. I started school yesterday and thought my MWF classes were my TU TH classes, but ended up taking care of everything with disability that I needed to. I technically was not allowed to enter a classroom without the professor knowing I am 100% disabled and all of my restrictions and abilities. In between my classes I drove to my surgeons office and asked them about a note with restrictions and abilities to go to school. They said 'You should not be doing anything while on pain meds, thats  why we will call you on wednesday and talk to you about it'. When I told them about having an advocate they cut me off and refused to answer me. So I left because they were so rude to me. I then called ran into my professor and she said she would be my advocate, and sign a doctument stating what she will do for me. I know have 4 advocates friends and students and professors at the college. Also it states on the pill bottle "do not drive or use any machinery UNTIL YOU KNOW HOW YOU REACT TO THE MEDICINE" it does not say 'sit in  your house and do not drive or do anything but become depressed!

So today I drove to my pain management therapists office and told them everything, and they are going to write up a script for me tomorrow saying that I react fine to the meds and I am completely capable of maintaining a college education with an advocate and emergency contacts and a prefferred hospital. I know all of this because of where I worked.

There is always another way around those huge brick walls you feel like your not getting through. No matter how think, how high, how hard and hurtful those bricks are you will get through it and you will maintain a happy healthy life

I put my mind to it and refuse to back down about college and my art show, and numerous people and family members and things have gotten in the way but I refuse to let them bring me down and that is what you should keep in mind. No matter how happy you are  someone or something is going to try and take that happiness from you, because they are envious and they want what you have.

I am here for you because you are my family

This is a vent, but also it makes me wonder about their Dx criteria & how many can be easily mis dxed...it all depends on the Doctors opinion. One says you have this the other says you have that.

I have seen 4 Rheumatolgists in the 2 years since my celiac dx - 1 says I very clearly have both celiac & lupus...3 in my new town say they are not sure it lupus & they don't think it is.

Beacause I have no kidney involvement, no arthritis, no blood clotting disorders, no obvious malar rash, no positive response to plaquanil.

I do have:

• consistantly positive sometimes very high ANA w/speckled & homogenus patterns
• joint pain
• muscle pain
• extreme fatigue
• eczema like rashes that come & go - on my eye lids, eye brows, side of nose, scalp, ears, underarms, toes, stomach
• migraines, cluster headaches, tension headaches - MRI's normal
  
• dry eyes & mouth
• fingers turn white, then red & hurt when exposed to cold
• sun sensitivity without rash, causes dizziness, headache, eye pain, skin turns red in sun, a feeling like a weak acid anywhere sun touches.
  
• stabbing chest pain, heart & lung problems have been ruled out
• weakness
• dizziness
• loss of control of limbs
• tingling & numbness in my arms & hands
• many cysts
• possible endometriosis & ovarian cell thickening (still testing)
• severe pms
• border line iron anemic
• very low D
• one time low in B12
• digestive issues
• fungal infections
• depression
• mood swings
• mildly positive lyme labs

This is something I have been dealing with for almost 20 years, I have been in & out of Drs offices since I was 14. First 3 years they said it was all in my head, then for 4 years it was Fibromyalgia & IBS, then for 9 years it was musculoskeletal or mild lupus & for the past 2 it's been celiac (without a doubt) & maybe lupus, hashimoto's, fibro, blood sugar issues, likely endometriosis & reproductive problems.

I would let it all go & accept it as severe celiac & nutritional deficiencies but the chest pain & sun sensitivity keep me wondering. There is a niacin deficiency disease called Pellagra that causes sun sensitivity, but my rashes are not that bad & one docs says there is no test for niacin levels....have to ask another.

anyways I have to tell those new to this to be patient as you can see the dx process can be long & confusing.

Had to spill it to someone, Hubby & family are confused & though they try to understand they can't really understand like you guys.

I'm sitting here trying to decide if I should cry or scream. As much as I would like to scream, I don't have the energy. My pericarditis has walloped me once again. I can't find a position that is comfortable at all and pain medication doesn't seem to help at all.

What is worrying me the most is that I had mild lupus (although mild lupus doesn't feel the same as normal!) and I could function well and do things I enjoyed after the plaquenil kicked in. Now I am 55 going on 85. Locked in the house, can't do all the housework like I like it done (okay, I have been accused of being a neat freak, but I also have asthma, and dust and mold are big triggers for me.) I drag myself to work at an EASY job (work four 5 hour days) and then drag myself home. I get through the week looking forward to getting a break....only housework and groceries and whatever else comes my way leaves me wiped out. Sunday night I'm always in a funk wondering HTH I will ever get though the week? It seems like that's all I ever think of, how will I get through this????

I should be grateful to be able to purchase a new car. I left the 3rd dealership in tears. (And a few parting words not too respectable coming from the reverend) I couldn't handle the freakin' games and run-around. I have a 12 year old camry (only 215,000 miles!) and I'd just as soon put a new timing belt in it than go through the drama! (not to mention the stress of having to be so careful with a new car...that's why I only buy one every 10 years or so!) My husband, who has always been very supportive, is beginning to get worn down and it is showing. He snaps at me these days. He said we were only car shopping for about 4 hours. FOUR HOURS - that must equal a thousand spoons!!!!! I told him that equaled a work day so I had one less day off this week.

There seems to be no end in sight and I'm afraid this is going to be my new baseline.

Sorry for the vent, but it's the only screaming I can do today.

THanks,

Jan

I just wondered what those who are working do when they are flaring. I keep going to work not matter how bad I feel figuring this is chronic and I just need to suck it up. If I stayed home everytime I feel like crap I wouldn't have a job. I went to work yesterday with chest pain from my pericarditis. (Ended up in the ER late afternoon.) My husband gets ticked off at me, but honestly, if I have to work, there are not a heck of a lot of days I really feel up to it anyway!

Just wondering if anyone else does the same.

Jan

It is short story about a long journey.

sorry i cant post links but here is the site

www.thelupusmagazine.com

thanks, have a great day everyone!

Debra

So the teeth thing was a nightmare for about a year, mny last check up i only had 1 cavity and they had to move my crown cuz it somehow cam dislodged, it was suposed to be an easy thing but the thing was on tehre so good they had to break it off to get it off which none of us could understand why in the world the thing moved, but now I think about it, i think its the lupus/mctd that did that to me.

Well the past few days my tooth has been hurting and the gum is more inflamed and its spreading and the gum looks like it may be pulling away from the crown, i'm really freaking out right now since I can't afford to lose this tooth, i wouldn't have any front teeth on the top if this happens, im going to the dentist tomorrow to see I just hope its nothing major.

And of course my luck sucks as I just got over a nasty celllulitis infection in my right foot, i finally can walk on it wihtout pain and I have a foot that isn't red or swollen so I was very happy about that and then bam  the tooth thing.

To make the tooth thing even better, my insurance lapsed they sent the notice to the wrong place and was told mroe or less tough luck you should have known, well I didn't know my bad, I should have but they were suposed to send the info out like 2 momths in advance and I never got a notice or i would have paid, i got lucky and got some other insurance today.

And then to add to the problem, the cytoxin thing is turning into a nightmare, I thought I would be able to jsut get it writen for and have it done oh no not at all. It wouldn't be so bad if I diodn't live so far away from the hospital i goto for my IVIG, i go in there every 3 weeks for the IVIG and the Cytoxin would be once a month and since I live 3hrs away that would be way to much to handle money wise. So we were trying to get me to have an oncologist closer to home to write for it and let me do it there only 1 hr from my house. Well you have to send them all records and then the doc will say yes or no they wont take your case. So we found out that my new rheum onmly sent them 1 sheet of paper for some reason, lucky for me i have all my albs and stuff, but when I talked with the oncology nurse she kept saying they needed the biopsy results and I told her like 5 times it wasn't lfor cancer or anemia i had lupus and was going tob e on cytoxin and i just needed a doc to write the orders and defer to my docs and she tells me that she dosen't know if any of the docs would be willing to do that (go figure Im sure its an ego thing) Im just fed up with everythign and my breathing is way worse right now, my eyes are horrible i can't see a thing without my glasses on and my optic nerves are all swollen.

ok sorry for the rant just having a hard time of it right now

I have my interview for promotion tomorrow.  I am so tired. I am trying really hard to be positive and get through this. It's been four full weeks now of feeling sick.  I think i have lost about 1/3 of my hair  it's just falling out.  Plaq was started last week, no + or - effects yet.  How long is this gonna last?  I just want to be ok, but I feel so horrible.

****Just wanted to say that reading the boards has helped me in such a huge way over the past several weeks.  I am so happy that this is here!