[cispence98]

Hello everyone! My name is Laura and I have been reading comments and posts for almost a year or more and never introduced myself, so here it goes...

I was diagnosed almost 2+yrs ago I am now 39 (40 in Sept ughh!). I was very sick for a long time and was seeing a GI because I was losing so much weight (almost 40+ lbs in less than 3 months) and was very week and felt like I had the flu, it got really bad for a while people began rumoring that I had cancer then ms. Well my GI ran all these tests and by a fluke she called me up and said I think you have lupus, I was like lupwhat? never heard of it, so I went to see an internest (brainn fog?)doctor? and he asked me to describe my pain in colors and I was like [email protected]#!? after I did he said I was depressed and he would run the test anyway and retest my already sky high sed rate, well I went back to my car and cried because I thought after being sick for soo long and to finally feel like I had an answer was devastating, well the next day he called and apologized and said I did indeed have lupus and that I was 200+over the high along with a high sed rate and he sent me to a rheumatologists who again ran the same tests and confirmed the same, I felt like a pin cushion.

Anyway I was also diagnosed with fibro (big surprise) hypothyroid, colitis, arthralgia Oh and SLE lupus!! I have been on prednisone for the whole time since I can't take plaqniel(sp) due to high risk for detatched retna, I just went back to see my Rheum, on Wed and she finally added Imuran to the mix ( prednisone,synthroid,lyrica,librex and elevil and now the imuran) Oh and the occasional vicodin,soma,and klonopin (can't sleep) I felt like crap the 1st day of the imuran but I really feel better today I see the light hopefully, its been hard.


I know this is long...please bear with me... I have autoimmune in my family my dad has Rheumatoid arthritis, my sister has ulcerative colitis her daughter (my niece) has type 1 juevinile(sp) diabities and my sister has cushings, it was kind of like what about me mom??

I think I got sick when I was pregnant 8+yrs ago with my second child (its a boy this 1st was a girl 15+yrs ago) anyway I was very sick when I was pregnant with him I had several ear infections (bleeding bad bad bad) I had bronchitis I lost weight I had colitis so bad I asked my husband to break my finger it hurt so bad I wanted to divert the pain, I ended in early contractions and was put on brethine Yuck!! 1st panic attack they don't tell you that medicine is for asthma, I had to be hooked up to a machine for 2 hours a day seperatley and it monitored contractions then it sent the info to a nurse who called me back and would ask are you ok you had 6 contractions you need to relax (what does that mean relax) anyway I was so sick during my pregnacy that I never recovered afterward I ended up having a rash on my hand for 2 yrs they couldn't figure out what it was it looked like my hands went through a meat grinder nowit makes sense.

Anyway I still feel like they are overlooking something Does anyone else ever feel that way I mean your glad you have an answer and meds and you think I am going to be okay now but your not, I have been in a flare since Oct and it sucks the weather has been cold here in Tx its 48 right now how am I suppose to feel good in this you might as well put me in a freezer (oh and I forgot Raynauds can't forget the Raynauds)


Anyway that is me sorry so long I am originally from Ny so I am long winded but sincere and sometimes brutally honest (did I say that). I am blessed though my husband is understanding for the most part although he thinks its just a disorder not a disease, and that it should be fixed and why isn't it I keep telling him its long term and he stuck with me, we own a real estate company so we get to work from home, it really devasted me to have to quite my job while I was pregnant I use to work for Countrywide mortgage so I am kind of back in my element.

Well I have enjoyed reading everyones kind words to each other and felt it was now time to write instead of read. I have actually been a member for a while.
Well I hope to meet all of you and I hope you are all well (at least in mind if not body)
God Bless all of you and your families!!

 

[sushi]

welcome aboard Laura it is very nice to meet you. im glad you decided to post and introduce yourself.

im sorry about your dxs, but at least you know whats wrong with you

what meds are you on right now? i hope that the flare youre in now will
subside soon.

see you soon take care, Lydia

 

[karen.w.]

hi laura

A big warm welcome to you :wavesmile: I'm glad you took the plunge & decided to join us

I'm sorry to hear you have had such a rough time,you certainly have an awful lot to deal with :sad:
you come across as a very positive person laura & that is always a bonus living with a chronic illness.

I have been a part of this lupie family for 6 months now & I'm amazed how kind,supportive & caring everyone is.I have learnt more here than from any doctor I have seen & feel more in control now that I am gaining so much more knowledge

laura I can defintely relate to feeling overlooked.I always come away from my rheumy feeling that way.Is there anything in particular you're concerned they are missing?

I hope you enjoy being a part of the forum &I look forward to getting to know you, take good care
bye for now,karen x

 

[cispence98]

Thanks guys, I appreciate you taking the time to read my novel!! I look forward to meeting all of you too!! as far as meds goes hear is my cocktail strirred not shaken HAHAHA!! prednisone,synthroid,lyrica,librex and elevil and now the imuran) Oh and the occasional vicodin,soma,and klonopin (can't sleep) I felt like crap the 1st day of the imuran but I really feel better today I see the light!! As far as the doc goes I feel like MS should not be ruled out but since we are selfemployed and selfinsured an MRI is too expensive. Just trying to get through the day!! Thanks guys for your support and I hope to offer help and an ear to all in need!!

 

[Joandublin]

Hi Laura

Welcome to the Forum. Im glad you decided to take the plunge and post on the boards

I think a lot of people can empathise when you say you wonder if they are over-looking something. I have no doubt that over time many of us will have our diagnoses tweaked and changed, depending on the presenting symptoms and bloodwork and the outcomes of various research projects. As time goes by there will be more understanding of the disease and probably there will end up being various categories or sub sets of it.

On the other hand the one sure thing about Lupus is the fact that it is a systemic illness which can involve any part of the body and the current treatment is designed to keep the disease in check and treat presenting symptoms rather than curing it. I guess until the medical world finally solves the mystery of what triggers Lupus in some people, then a cure will not be found. It must be difficult for your husband to get his head around this and frustrating for you at the same time.

Unfortunately some people have a difficult journey with Lupus and it can be a tricky situation trying to get flares under control. I remember when I first joined the site and read about people trying and testing combination after combination of meds I was fairly horrified! I thought that I would be different and that I would be given a pill and everything would be fine. Well here I am almost three years later and Im still tweaking and changing meds each time I visit the Rheumatologist. Its funny how one finds oneself accomodating changes they never could have fathomed such a short time ago...

Anyway, I'm rambling a bit here. I just wanted to welcome you and send you a bit of empathy! Hang in there. Who knows...we just may get through this together

Nice to have you on board (or should that be 'on the boards' )
Luv n stuff
Joan:rose:

 

[cispence98]

Awesome thank you soooo much!! Its so nice to be able to talk to people who know EXACTLY what you are going through and you don't have to explain every little symptom or feeling of frustration!!!
Thank you all times 1 million!!

 

[lazylegs]

Hi Laura,

Welcome to the site.

It sounds as though you have gone through some of the same trials as many of us. Not that anyone wants Lupus, it is still a relief to get the diagnosis. At least you feel like help is on the way. It does take time to find which medications will help you function on a more normal level.

You mentioned MS. Are you suffering from MS type symptoms? Lupus can affect people in many ways including neurologically. My primary symptoms are more like MS than Lupus but the tests confirm Lupus. Each year my doctor rechecks. If an MRI is too costly the testing can be done with a Lumbar Puncture. It is more invasive, but it could answer any niggling doubts.

I hope to see you in the chat room sometime.

Take care,
Lazylegs

 

[cispence98]

Hey Lazy Legs, thanks for the comments!! yeah for 2 yrs since diagnosed and before I felt like MS was more probable from my symptoms I have had some blood work and thats about all to rule it out, I think its more like the nerve system lupus I read about it somewhere, can't remember where? Darn foggy thinking!! The one thing that bothers me the most besides the fatigue is the pain in my legs (great user name BTW) it hurts to walk and the pain is so far deep that it isn't arthritis and it definately feels more than the fibro. I see my doc again in 4 weeks to see how the imuran is working so far I do feel some relief but who knows if maybe my mind is saying DARN IT you are going to feel better whether you like it or not!!
I will ask my doctor about the procedure you talked about because even she said that eventually we will have to rule out the MS. We always do the RA factor test since my dad has rheumatoid arthritis so thats always a concern.
Thanks again and I will look for the chat room!!