View Full Version : Hi, I am Dawn (MrsLostInJersey)

02-16-2007, 09:32 AM
I am a new member because for the last 5 years I have struggled to convince myself I am not sick and I was in major denial and now the harsh reality has hit me that I am sick...maybe very sick and I should have reached out to other people sooner to get my head together before I got this far along. So I am really going to need the love and support of this wonderful group to get me to a place that I should have been 6 months after I was diagonsed.

I am a Lupus, Chrones and Fybromyalgia Patient. Right now thank God.... KNOCKING ON WOOD LOUDLY my chrones is in remission. Which i know is strange... most flare all at the same time. But I am in remission with my chrones. The good news is that in the 5 going on 6 years I have had that disease I have never KNOCKING ON WOOD LOUDLY AGAIN... lost any intestines at all. Actually never had any surgery at all. I know I have been blessed in that area. The worst I got was a fistula from my bowel to my vigina. So I am sure you can guess what happened .. once in a while it came out the wrong side. With treatment of remicade tho... the Dr was able to shrink the hole and that has pretty much stopped.

My Lupus and Fybro tho... well... in the beginning .. my lupus was non active type. But lately ... I got sick from my immune system being down and from coughing so much I hurt my ribs and sterinum which the Dr said is a part of my Lupus. Then my pain management dr. prescribed neurontin to me because I started to get these spells where i would get these feelings that ran over my body in waves and would hurt real bad and if someone touched me during one... the pain would be like someone took a baseball bat to me. The Pain Management guy said that would be a nerve problem so thus the seizure meds. Then just 4 days ago ... for no reason at all .. I lost the use of my legs and fell down ... no rhyme or reason ... just boom and down...

God I am soo scared... and my husband where he is sooo helpful in the house... with cleaning and cooking... he is not supportive to me emotional... I have been sooo depressed... all i do is cry ....

I looked in the mirror today and i have these 2 red spots... look like blood vessels popped in my eyes... I just dont know what to do anymore... Very scared...

Does anyone feel this way now or ever??? Someone talk to me please???

02-16-2007, 09:48 AM
Hi, Dawn - and welcome. I'm sorry you are going through such a stressful time - it must be frightening. Do you have a rheumatologist who has been treating your lupus? If you do, you really need to contact him or her and discuss these new symptoms. Are you on any type of medications other than neurontin? It can sometimes have unpredictable side effects and interactions with other meds. But lupus can cause neurological involvement such as seizures, severe depression, neuropathy, or other problems, so please let your doctor know what's going on. There are many different treatments available which can help. i know it's frustrating and scary right now - but you can learn to manage this disease with the right kind of help. And there are plenty of people here who have walked this road before, who will do anything we can to help. Emotional support is important - but some men aren't very good at it.. But I'm glad your husband is kind and helpful around the house.

02-16-2007, 12:06 PM
Ohhh I am sorry ... I must have failed to mention in my post that I do have a Rheumatologist. My regular doctor was doing a normal blood test when he found the lupus so he called me back in and said .. prolly just a mistake we will re-run the blood. It came back bad again. So he sent me to my current Rheumatologist .. and he ran the blood 2 times to a lab in California that specializes in Lupus and i was positive.

Dr. Gonter put me on Paquinel to start off. It was my Pain Management Dr that put me on neuronton but I have not filled the prescription yet because I have not seen Dr. Gonter yet ... I wont do anything till he says I need it. I only trust him. I do have an appointment with him on Monday so I have to wait the weekend to see what he thinks. Till then ... I remain scared.

02-16-2007, 01:33 PM
Dawn, I'm a little confused by how your doctors decided you had lupus. Right now, there is no single blood test that diagnoses whether you have lupus or not - that diagnosis is based on the results of a number of different lab tests combined with the pattern of your symptoms, and whether they suggest a systemic auto-immune disorder. Lupus can very complex to diagnose because it can look like a dozen other diseases. So you might want to talk to your doctor to find out exactly how they reached the diagnosis in the first place.

02-17-2007, 07:40 AM
Ok.... so your telling me that I have been taking medication for over 5 YEARS and been in pain and now I am just some faker that has decided to come into this forum and pretend to be sick. YEA right.... like I have the time or energy .... thanks for nothing... I thought this was a sight to help people not to make them feel like they are fakers.

I can not believe you are actually questioning me like I am some poser. To they other people of this board that were not involved in making me feel like I don't have the diseases I do have then I wish you well..... the rest well fill in the blanks.... i am out of here...

02-17-2007, 08:36 AM
I am very sorry if I seemed to be questioning you - that was certainly not my intention at all - it is simply that sometimes doctors tell you you have a disease without really explaining how they reached the diagnosis, or what symptoms were significant to them reaching the diagnosis. And so many people have other illnesses on top of the lupus - like fibromyalgia or Sjogren's syndrome - that might be going untreated because doctors blame all the symptoms on the lupus. So I think it helps to know as much as you can about the original diagnosis, what your specific lab test results were, etc., and if there was anything in the test results that suggests more than one auto-immune disease, since it isn't unusual to have lupus in conjunction with some other autoimmune illness. I didn't express myself very well and I'm sorry if it offended you.

02-17-2007, 10:26 AM
ok.. ok.. I have had time to calm down and now i am not so emotional. In my very first post i did tell everyone that i am a CHRONES, FYBROMYALGIA and LUPUS patient. I do have 3 auto immune diseases. I do realize that most of the things that are happening to me right now my not be all LUPUS related but.......I was told by my pain management doctor that it does seem that my Lupus has advanced.

I freaked out and got upset because right now i need all the support i can get that i am NOT getting at home and I THOUGHT i was going to get it here. Then I read your post and based on how i feel today... i have to say it really got to me.

I wish i had all the answers and yes i wish i was not sick... but the truth is ... I AM. So i have to dea with it... somehow....I was hoping this place would help me deal with it. sigh... who knows.

02-17-2007, 11:28 AM
Dawn, I am so glad you come back - I sent you a private message - I hope you got it.

I think we all get a little freaked out sometimes when the lupus decides to rear its ugly head after being quiet for a while because the disease is so unpredictable - you never know what part of the body it's going after next. It sounds like your doctors have the Crohn's disease under control at least. Has your doctor suggested starting you on some new meds for the lupus? You mentioned you were on plaquenil and neurontin, but there are other meds the doctors can add if those two don't seem to be controlling your symptoms.

If you were coughing hard - or vomiting - sometimes the force can rupture little blood vessels in the eye and the blood leaks into the white part of the eye. I've had it happen before during bouts of bronchitis, and it looks really scary. It can take about six weeks to heal up completely. But if it seems to be affecting your vision, or you have a headache at the same time, or your eye is swollen as well as red, please call your doc and get it checked out to make sure it isn't anything serious - especially if you have any history of high blood pressure, because it can also cause the blood vessels in your eyes to leak.

Once again, welcome - I am so happy you came back. i hope this time we get off to a better start, so that you can find the help and support you need and deserve. Please keep us posted on how you are doing!