View Full Version : hello - i dont have lupus - i have ******* sydrome...but..

01-08-2009, 11:31 AM
hello!!! my name is rakel and i have something called ******* syndrome - it is a working diagnose and i have had this for 4 years now - well looking back i think i have always had this - its just got bad like 4 years ago.
i was a sales rep at a big company when one day very quickly - i could not really walk ok anymore. over the next week i got pericardisis (imflamation of the lining around the heart), so was put into hospital - where i stayed in there for 2 months - i lived on a narrowboat at the time so i wasnt used to being in one place for too long - let alone being stuck behind a curtain all the time and i wasnt allowed off the ward without a nurse escort so it was abit much for my brain to take at the time.
anyway i almost died then - i lost my sigth, and at one point they didnt think it would come back - but as u can see it did - which is something i consider nothing short of a mircle!! i lost my hearing, the ability to move, have lost lots of my memories from before i got ill like this , as well as the rest of it that u all know, joint pain and swelling, fever, being sick all the time, mass confusion, my brain swelled which gave me some pretty nasty headaches, i could not stand up at all, etc etc!!!!
the worst bit of hospital was that they treated me me iv steriod injections - 5 aday at 100mm and 80 mm of tablets. i went from a size 8 to 16 in 2 weeks and i have these scars on my arms where my skin split open because of how much i swelled so quickly. i was on this for over a month before my imflamtory markers were ok again, and then i had to withdraw 100mm per week - which was just as bad as the flare. for 2 whole weeks i had this feeling like someone was pointing this gun to my head , like they could pull the trigger at any moment, and all the stress that would go with that - i had that 24 hours a day - and i was fitting because of the withdrawel. i couldnt control my actions and it was like watching someone take over my body . i also got this type of dizziness which meant i clouldnt sit up or anything for like 22 hours aday - but for 2 hours aday i was fine but it was in the early hours of the morning and no one believed me for ages that i could sit up...until i grabbed a nurse one day and made her put it in my medical records cos i wanted to get discharged so very badly at that point lol!!
i get admitted every now and again ( which i have learned to deal with and its only for a fews days at the most now so it doesnt send me crazy!) and in the last couple of years its been abit out of control. the first year was spend getting my strength back and learning how to walk again, and the year after that was really good - i got to voluteering 10 hours a week and asked the job centre to let me back to work. there doc's , very wisely as it turned out said i wasnt ready and if i stayed ok another year i could go back then. but i had another major flare that went more into my legs and hands and now i walk always with either a stick if im well, crutches or sometimes i really need a whelechair - but i dont use one cos im to embrassed about it!! sad really hey!! i then developed a problem with the methotrexate as it was giving me these black out type headaches - as in i was blacking out!!! so they had to reduce how much i was on and ive not been the same since! i got worse and had another major flare - so i got put on sulfasazine which has helped but im still unstable really - and i want to be more stable. my last major flare was this summer - so ive had 3 majors in 4 years and im currently having little flares every 2 weeks at the mo, but i am feeling better and i hope this will improve. my docs said if it doesnt they migth have to put up my methrtraxate again and ill have to live with the black out headaches!!! i also have secondary fibomylia as well. i get the fever, aching, joint pain and swelling esp in my knees, and hands - they dont open probably and shake when i open them, resting temors, uvetiitis, titnitis and hearing loss, vomiting, headaches, confusion, depression, hair loss, exhastion and insommia or i have to sleep at least 14 hours a day. i have had the butterfly rash a few times, although the sun seems to make no difference to it - i mainly get it in the winter which makes no sence really lol i also get this sudicial level depression a week before am major flare that last a fews days and thats a tough one - i end up on the phone to someone cos then i need someone to tell me i have a reason to live - which is werid cos i am normally a very happy person
i have very good and lovely doc's and i trust them completely - they r great and i would be completely lost without them. i aim to recover and set up a charity called ladybug to help people to live with these things - cos there
is no help for us autoimmuies to cope with life and find away forward.i have set up a facebook group called ladybug, the soon to be autoimmune chairty and please feel free to check it out if u want too! i want to study in some form of concousling, and i voluteer in the mean time to build myself up for a return to work and to give something back to the community that pays my benefits though there taxes. i am currently seeing if my old voluteer job with have me back after not being in for 4 months over the summer flare - as yet i have heard nothing so its not looking good but i am currently training to be a befriender for herts society for the blind as my next voluteer job anyway and that is more interesting and worthwhile i think than voluteering in a shop!
i have 3 cats who i love very much and im into home crafts - i aim to make things and sell them on line to pay for my own trainging as i would like to be a support worker or theripst one day maybe, because i will have a good long remmisson one day - i know it, and i want to be prepaired for when it comes and not to waste any more time. i spend far too much time on facebook really, im a trekkie, i love reading and i enjoy talking to people and seeing/going to news places.
well thats it in a nut shell really - i hope i havnt bored u all silly and please excuse me, as i am new to these kinda things and have no idea how they work lol
lots of love to u all rakel xxx aka narrowboatnutter xxxx

01-08-2009, 01:16 PM
Hello Rakel and welcome to the forum :D

its soo nice to finally see you here :!:
there are lots of very intresting ppl on this forum, who are always really happy to help you, with anything probs, worrying, and general nags (you know)

You have been thru quite a journey thru your life, and finally things are starting to go well for you, i hope it continues :D

much love matey speak to you really soon


01-08-2009, 03:57 PM
Hi narrowboatnutter

Welcome to the board, wow you've been through the ringer but it sounds like you have lots of pep and fight left in ya.

This is a great site, I hope you like it here.

01-08-2009, 04:22 PM
Hello Rakel,

I'm Rob, and I was diagnosed with SLE in 2004, and I'm 40 years old. I read your story and I have to say it's scary, but it's also quite inspiring. You have been through absolute hell, yet you have so many plans, ideas, and indeed projects that you are working on. Just amazing.

It sounds like we also have a few common interests. I live on the coast of Maine, and do alot of sailing in the summer months. What sort of a boat is a Narrowboat? I also have 3 cats. And, like you are planning to do, I do minor work here at home and sell online. I rebuild/restore antique toy trains in my spare time and sell them online as a small supplement to my disability pay, and to stay busy. And both I, and our Admin here Saysusie are both Star Trek, and overall Sci-fi fanatics. I have a rather large 3 foot Enterprise A with fiber optic lights hanging in the den.

Anyway, I just wanted to welcome you to our site. You story is a facinating and sobering one. As you can see, we are a pretty laid back bunch, so please make yourself at home!


01-08-2009, 05:55 PM
hey!!! thats excellent to hear about ur enterprise with flashng ligths in your den!!!, whow, that amazing!!!! my trekkie thing has started with voyger and im a baby trekkie fan - i got into it during my summer flare !!! i am only halfway though series 3 at the mo - ive hardly watched next gen, deep space nine , or enterprise and i was very little when the first series was on the t.v - so ive got it all to enjoy yet lol!!!

a narrowboat is a sort of boat that only the english seem to have. it is gen a boat that is about 6 foot wide and can be anything up to 20 foot or 80 foot long. mine was 6foot wide by 30 foot long and it had all the mod cons like a fridge, cooker, shower, t.v, sterio and even a dvd player lol. it is powered by a diesel engine and u get the electricity by very large batteries - like carvan batteries that r charged up by running the engine every day. people either live in a marina or on the 'towpath' that runs along the river. the towpath is where in the old days before engines, narrowboats were pulled by horses and they were used to transport coal, and wool and things like that up and down the country before there where train lines to do such things. they were called working boats - today there r not many working boats and people either live on the boats or use the rivers to go on hoilday with. people who live on the boats are called liveabroads and there are about 20-30 thousand people in the u.k who live like this. it is an excellent way of life - u r very close to nature and it is very peace and quite - well until boaters get to gether for a party lol!!!
are we allowed to put a photogragh on there because if we are and i can work out how - i will put a photo on here so you can see what one looks like!!!

thank you for saying am doing okm - i feel really guitly , almost all of the time for not getting back to work yet, but it has been difficult and with these little flares all the time and how i have been over the last fews years its been beyond my control. it sounds excellent that u are repairing little trains to sell - not only does that sound fun and interesting but u are also preserving history so future genatrions can enjoy the little trains also.
so how long have you been running your home business and how do you find selling online - as any advise from an old hand at it would be gratefull recieved!!! :D love rakel aka narrowboatnutter

01-09-2009, 09:07 AM
Star Trek? Voyager?

nah this is where i leave this post :lol:
cant be doing with chat like that!!

may see you in another topic lol


01-09-2009, 10:05 AM
I googled Narrowboat, and saw a bunch of photos, and read about the history. Neat stuff. Very unique looking boats they are. I have a 1977 Pearson 30 Cruiser that I bought as a "fixer-upper" and did a total restoration on. It's 30 feet by 9.5 with a 444 square foot mainsail. It has an inboard 4 cylinder gas engine and two batteries. The interior and trim is teak. It will sleep six, but I usually go out alone. I like the solitude. I drop anchor and watch the whales and seals doing their thing. I just finished a home course on GPS navigation and radar that the Coast Guard gives. Installed a GPS nav system last year, figure I better learn to use it, it's a big ocean out there. Hopefully this coming summer will have fewer flares in store for me, so I can get out more.

I watch the old Next Generation series mostly. Have you seen the previews for the new movie? It opens here in May. Looks pretty good. I've been doing train restorations for many years now. Maybe 10. I sell almost exclusively on Ebay. I also buy many of the pieces I restore on Ebay. I have to be careful about chemical exposure, so my father helps do most of the paint work for me, and I do the mechanical part as well as the markings and final details. Many collectors will not run their original Locomotives, but will buy professionally restored pieces as duplicates and run them, so there's quite a market for it. It's fun, and it helps pay for my own train collection. It's something I can do completely at my own pace, which is good because many days I can't really do anything. No pressure is nice.

So with Serositis Syndrome, you have flares much like people with Lupus have them? So many of the symptoms of your disease sound very much like the symptoms of SLE. I still cannot quite grasp the magnitude of what you have been through. it's some frightening stuff.

Do you still have your narrowboat? I keep my little tub in the marina, and I live right by the harbor so I just hop on board, and go. I love the feeling of being where life can't quite reach me, and I could watch the wildlife 24/7 and never tire of it. Anyway, gotta run. Hope you have a good day.


01-10-2009, 06:50 PM
hiya - sorry ive not replied sooner - ive had total imsommia due to some steriod withdrawel so ive been abit quiet online!!
i dont have my narrowboat anymore - unfortnancy i had to sell her, as i wasnt able to keep up with the repair and gen maitance work so she was going downhill really so as much as it borke my heart i sold her. it was one of the worsr days of my life!!! lol
yeah serositis has flare periods and remmsion periods like sle, but theres flares and flares really hey. ive divided mine up into small medium and mega to try and make sence of them and for a way to explain how i am to my doc's/ they have also come up with a little list of 'important systmons' that is, when i getting alot of thoses suddendly or extremely for one reason or another we know that a mega is on it way or in progess and then of course go into flare planning with my doc to sort me out. i seem to have at least 1 huge one every year at the mo ( but last year i had 2 majors)- by that i mean the ones that go on for over 8 weeks and leave u hardly able to move, breathe, think and the rest of it.....i have periods that i tend to have mini flares every couple of weeks but apart from that im o.k i call these well or getting well periods....as in theses i can go out every over dayish and i only get have the exhastion, half the pain etc, half the stiffness, etc.of course as with sle life planning can still be hard as there no set pattern to when ill have better days and can go out as it s very unprediable. in those period i know say ill be ok on 3 out of 4 days in the week - but what days they will be will be a mystrey so i tend to have to take it each day as it comes. i also find if i over do it in well period i can bring a flare on quite quickly. i am hoping that one of these will go into a remmsion - it was looking like one of these periods could do that at the start of this summer but i had alot of stress - moved home under unpleasant circantances and they slipt up with my boyfriend and here i am in jan - just feeling better enough to start voluteering again. so my aim this year is to have a chilled year with no major upset so the whole flare cycles can calm down!!! my main triggers are illness and stress it seems!!!
i had some good news yesturday - i have got my job back at oxfam - i think i was over worrying about if they would have me back and i start again on the 22/01, im very happy about it, when i was a kid i always used to walk past it and really wish i could be as luclky as the peeps who work there and now i am!!! hooray!!!!
i gree with u that thee is something special about being alone with nature...when im stressed and stuff i do like to watch the wildilfe and think how there lifes must be. they havnt got doc's or mod cons or sofa's or anything like that, they r at the mercy of the weather and the seasons and they dont complain, give up but push on regrdless and seem to have agreat time in doing so...ive got alot of postive vibes thinking about that before esp when ive been ill and in watching and considering - nature and wildlife it contects you too reality i guess...puts it all into to place so we can keep our heads level, not panic and push on to victory regardless!!!