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I May Have Lupus But Lupus Doesnt Have Me!!!!!!!!

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Posted 11/23/2012 6:51 PM (GMT 0)
Things are finally looking up, lupus after all, might have been a kick in the teeth 4 months ago, but today is like i dont have it. Upon my recent appointment i had nothing but good comments about how im coping with the chronic illness bearing in mind it is a chronic illness i feel like its died down for a while. Upon my hairloss i can now can i am not experiencing hair loss anymore its STOPPED oh yeah, oh yeah, oh yeah, woohoo. I still have thin hair but hair growth is extremly visable in fact its grown so fast like this long ............................. no lie (sorry about the crap example). Things are looking so bright i currently dont have any trace of lupus nephritis or any other underlying issues with organs. I continue to be vitamin d deficent and anemic but that will be under control soon. I was told as for the Prednisolone, Hydroxychlorquine, Asprin i will take these for 20 years possibley more with increased doses in the summer. I think i can manage this diease, not to get rid of it (impossible for now) but to bring it to a level where i can control it not it can control me.

Hope everyone is doing great...

My New Motto: I May Have Lupus But Lupus Doesnt Have Me 

 

Cheerio....

Danielle

Posted 11/24/2012 2:12 AM (GMT 0)
My hair loss has slowed down too. It's thin but coming back. Funny thing is it's coming back curly! I haven't had curls since I was two. :))
Posted 11/24/2012 10:44 AM (GMT 0)
Weird mines straight though i guess everyones different hope you are ok and everyone else....
Posted 11/24/2012 11:32 AM (GMT 0)
Hi miss lupus,recall you are in uk!i am a chap aged 50 dont have lupus myself but been dealing with it past 17 years.My ex-wife had severe lupus (cerebral)d/xs 17 years ago i carried on working after 4 months off looking after her.10 years ago my son then aged 10 was d/xs with lupus nephritis stage 4 (bad)gave up work to care for him/her.My daughter is suspected to be evolving into a lupus had many symptoms over the years but not conclusive!!Glad to read you are feeling bit better,if i can help in anyway,practical advice or anything at all ask away.Where abouts do you live?I know more about lupus these days than my gp,my sons consultants said the questions i ask them,are what they normally ask each other lol.Keep well miss lupus hope to hear back from you.
Kindest regards Paul
Posted 11/27/2012 4:29 PM (GMT 0)
Welcome to our forum Paul. I'm so sorry your family has been through so much. It's really great of you to step up as a caregiver. Please keep us posted on their wellbeing. Love, Butterflake
Posted 11/28/2012 7:01 AM (GMT 0)
Thanks Butterflake,both are much better these days,my son now 20 lives away independantly at uni,my ex-wife is so much better these days no recent flares in years.I think her hysterectomy some 8 years ago (due to a lot of cyclophosphamide treatment!) and a change of meds to mycophenolate mofetil (cellcept) helped the most.My daughter now 17 has had loads a symptoms from being about 8,one time was admitted after i got emergency appt. consultant convinced she was flaring and nephritis,bloods came back neg.(thank god) i do think its only a matter of time before something happens with her,too many symptoms over the years.Been hard dealing with it at times,but used to tell myself it aint gunna go away,just carry on best we can!! I have now returned to working as no longer needed as carer.Wouldnt wish lupus on anybody especially a virtual whole family.Everyone take care Paul x
Posted 12/6/2012 2:11 PM (GMT 0)
Hi paul, i think your contribution to this community is gr8 as u have lived with lupus n wld now far more than any dr... Sometimes i feel that way too...

Where im from is remote in australia therefore we dont have specialists jus drs and mostly jnr drs... Therefore afte my major flare in 2000 i started becoming my own dr, exploring and reading as much as i cld. I have even tried to reach out to other younger lupus patients and show them you can still lead a normal life with lupus... The most powerful thing is to have the knowledge and learn to evaulate early signs n symptoms before it flares out of xontrol.... I was in denial now i speak out n i know wen somethings not right n wen i walk into the drs room if they dont no me they take one look n think theres nothing wrong with me...then i start telling the dr whats going on n that it cld b this ir that... Im sure some think im ignorant n try to do their jobs but mate who knows better the patient whos body is talking to them or the dr with his text books n computer? I put money on the patient!!!

In the past 12 yrs i had 1yr drama free that was 2006the yr i got married n life was treating me kind the happiest moment of my life....


The 5 before and 6 after have been one major roller coaster ride. Diagnosed in 1994 full blown butterfly rash, aches n oains, joint issues to now in 2012 having enduered renal issues in 2000, anemia, neutrupenia, epilepsy, physchosis, deoression, hair loss to totally bald, muscle fatigue had to learn to walk again, liver issues etc it took 6 months in hospital n 6 months after to come back to normal then i picked my self up, got a job, had another baby even thou i was advised i may not be able to consieve again... 2003 & 4 grumbled with this n that then a another major set back in 2005.. I had encarditis and pancreatitis n was in ICU for a few weeks, then i lost my voice for a while, i was depressed, anxious, had physcosis, lost all my hair again!!! This took another 6 months to recover meanwhile my partner was caring for me and the kids, worked self employed with the help of my family we made it thru., 2007 diagnosed with lupus nephritis class IV started methylpred n cellcept n oral prednisone which caused another round of mania and pyschosis... 2008 my lefthip collapsed at age 29yrs i had a total hip replacement due to avascular necrosis 6 months later the other went they tried bone decompression surgery to no avail so another hipreplaced in 2009.
2010 grumbled along with infections and this n that so i took 6 months of time out in 2011 n moved away with my kids my hubby stayed at home for work n wld c us monthly best thing i ever did i didnt work i just did the mum thing n spent time with my kids..then i went back home n to work.... Its been a good 12 months just little yhings here n there till now!!!Lupus Nephritis class 4a & 5???

I often lay in bed at night n wonder if i will c my youngest graduate? As i struggled for so long i just take things one day at a time now.. Its not worth worrying about... My aim was to see my 30th bday n i did that 4 yrs ago my new aim is to see my 40th bday.God permitting.... By then my youngest will be 16yrs old, old enough to understand if anything happens to me...

Today i am still working and juggling my health and my family...the 3 most important things in my life... My health, for my family, my family for me and my job for my escape from my health problems..i have always wanted to write a book about my life with lupus from a patients view including a carer or family view as we dont realise what carers and family endure during this time n the impact lupus makes on thier lives also...what do u reckon?

I shd b going now as i cld talk about lupus all day n night...i will b sure to keep in touch...

Cheers to all
Posted 12/6/2012 5:37 PM (GMT 0)
Hello lillash, just reading about your life with lupus scares me to death how you have had so many problems crashed then got back up to be crashed down again. Iv been diagnosed since june and am only 18 (17 at the time) but i havent had that many problems is this what i have to look forward to i trust in my doctors but hearing from someone who has lupus does help. I was hoping to grow up and not have such bad symptoms i live in england and am currently on medication but it worries me to know i can be really bad i was told from now i will be on medication for 20 years possibly more i have Anti phospholid sydrome (sticky blood) which scares the hell out of me because i want to have childern i was getting on fine but seeing your issues made me think its not going to last

Danielle
Posted 12/6/2012 5:47 PM (GMT 0)
Personally i havent had many problems but it hasnt even been a year yet i havent had lupus nephritis theres no sign of that i seem to be doing well but have i actually got more to come? Does all the problems start if tablets are stopped or can flares still happen when im on my tablets
Posted 12/6/2012 6:20 PM (GMT 0)
Miss Lupus:

I wanted to let you know that lupus varies from person to person. Some with lupus have VERY mild symptoms and other have SEVERE issues. Just because someone has the severe issues DOES NOT MEAN that you will.

Lupus is known as the disease with a thousand faces. I have severe lupus, but I also have several other various serious issues. I have been dealing with lupus for over 25 years now. Did I get worse over time yes I did. But I'm currently being checked for a genetic disorder that has a lot of my issues that match the disorder.

If you're not having any other symptoms than the sticky blood, I would recommend that you take your medication and not worry what may happen 20 years from now. You will only drive yourself crazy with the "what ifs". I know we've had several ladies who have had children and did just fine. I had a child with my lupus and just needed closer monitoring.

I wish you well and just listen to your body, when your fatigued rest, and if something seems off go see your Dr. Hope this helps

hugs,
Barbara
Posted 12/6/2012 11:39 PM (GMT 0)
Miss Lupus,

I didnt mean to worry or scare you with my experiences... As Barbara said everyone is diferent and lupus affects people differently! The main thing for you would db to listen to ur body and do your research especially over time if you start taking multiple medications... Half of my issues were due to side effects from long term medication use...

On a brighter note, if u saw me u wldnt b able to pick i have lupus and have been thru what i have been thru... (apart from when i loose my hair thats the only give away that im crook) :-) which is only temporary it grows back once the flare is under control.

i live by the motto THERE IS ALWAYS SOMEONE ELSE WORSE OFF THAN ME!!! as long as i awake in the morning i take the world head on and live life to the fullest...

Take care now,

Lillash
Posted 12/7/2012 7:32 AM (GMT 0)
lillash,wow you have really been through the mill with your lupus!Hope you improve wont be overnight(as you know)but with right medication,strong sense of self belief hopefully you will get there!As reqaurds you question re book go for it gal.Will give my experience(not writing).My son as explained had nephritis,we found a pediatric consultant in city some 20 miles away however she relocated to Alder Hey childerns hospital Liverpool some 50 miles away,we followed her there!We were inpatients for a while and my daughter was also seen regularly there.This is the main center in the UK for JSLE (juvinile).They have various hospitals around the uk send all details regarding young people with lupus and clinical findings.It is the biggest of its kind i think as not much data for kids with lupus.However because of our long term experience we were invited to attend a steering group for this me and my daughter attended regularly.They as well as research/look for cause/cure also are evaluating cellcept in kids,never been done before!My daughter was asked to attend other meetings with a group called MCRN (medicenes for childrens network)the are a advisory panel on childrens,well being etc. better ways to administer drugs,new drugs etc.She found this fasinating and was even invited to Annual conference at Oxford University to give her thoughts on subject.However one thing i tried to set up was group meetings for parents/patients so we could help each other with various tips and advice for young people dealing with this illness,although all agreed good idea,nothing came of it!Also the main dr. in the JSLE study used our family profile to help get grants to study family lupus!I hope you can write a book explain various helping/coping methods would be good.My thats a long post!!Wishing you improved health.Paul
p.s to miss lupus there are many clinics in the uk that can oversee antiphospholipid pregnancys,with great success rates,either ask your consultant or get in touch with LUPUSUK,they will also help you.Did you know that the antiphospholipid illness was first d/xs in Britain by Dr.Hughes inLondon,one of top specalist in world!Take care everyone.hugs paul
Posted 12/7/2012 9:02 PM (GMT 0)
Thanks Lillash, i feel the same there are people who die instantly with worse conditions it just worries me with the way you suffered. People dont no i have lupus unless i tell them even my hair dont look different a friend said to me i wouldnt know you had lost hair unless you told me.

Thanks for your advice, Lillash

Danielle
Posted 12/7/2012 9:41 PM (GMT 0)
There is always a cure. Just because all the research at present says otherwise doesn't mean that there isn't a cure. Since Lupus is different is everyone then looking at the triggers is the answer to the problem. Virus or Bacteria or the lack there of in itself is lies the answer.

One has to look at what has low metabolic rate and high immunity rate? Within this equation their is an answer:)
Posted 12/7/2012 9:49 PM (GMT 0)
jstjohny,wish it was that simple.Have you actually looked at the multipule genes that are involved not just a singular one!extremly complex illness,and until they find the cause,i think will never find a cure,sadly!!!
Posted 12/7/2012 9:50 PM (GMT 0)
In my opinion: Like a car. There is an alternator, battery, and a starter. If the alternator is going out it will drain the battery of the care. Therefore the starter on the car will not work. If one gets a new battery the starter will work for a limited time. If one replaces the starter the alternator will still drain the starter and battery. The problem is the alternator. If one replaces it then the starter and battery is good to go. And everything is well:)
Posted 12/7/2012 9:53 PM (GMT 0)
WOW,you have your belief bud,hope it works for you.take care
Posted 12/7/2012 9:58 PM (GMT 0)
Sicko: This is just my thoughts. I have too, like you been living with the illness for sometime. Like Ockham's Razor ... the simple explanation of the situation my be right. I am just trying to use my knowledge to give some insight to the situation.

Doctors don't know everything ... We the people living it have to think for ourselves and not rely on someone else to tell us what is what.
Posted 12/7/2012 10:06 PM (GMT 0)
jstjohny,not gunna argue with you but if you read my post i DONT have lupus but my family do.Do some intense research dna,ds-dna,anti dsdna,r np heavy reading but worthwhile
Posted 12/7/2012 10:19 PM (GMT 0)
Sicko: If I may say kindly, what doesn't work is me waiting around for my doctor to say one way or the other. That is, I do the work myself. When I was sick and dying my doctor refuse to listen to me. Now that I feel better he informs me that I am sick. Whatever!! I want to live my life and my doctor needs to accommodate me ... not the other way around. I had to make the lines clear with him. Yes I have this and another horrible illness. And yes, despite these things, I will go one, and he will have to ensure that I have all the meds I need to get me through so I can work.

For those who can't work, I don't have hard feelings for. I also couldn't work for sometime. I am resolved that I want to work for now.

Why can't u just be happy for me to have something to add to the conversation? Why are you so eager to shut me down? I am just giving my logical plausible answer to the situation.

With love:)
Posted 12/7/2012 10:28 PM (GMT 0)
Just me, but if a cure hasn't been found for all practical purposes it doesn't exist, therefore I don't consider it a cure.

Lupus symptoms come and (hopefully) Lupus symptoms go, but you still have Lupus. Taking care of basic needs is important to keeping Lupus in hand -- healthy food, deep restorative sleep, moderate exercise, and keeping life as stress-free as possible.

From over 10 years of this illness, reading plenty of in-depth research and talking to hundred's of people -- if it were simple, like the alternator analogy, we would have more results!! The body is a complicated system, and Lupus is one of the more complicated diseases. We don't even know what causes it yet, and that is the very simple basic start toward finding a cure. I mean, we *do* know plenty of causes of cancer, but nope, no cure.

In conclusion, JstJohny & SickOfSulphites, please agree to disagree. Our common purpose here is to support those with Lupus! Thanks.
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