View Full Version : New at this
02-04-2010, 08:43 PM
Hi, I'm Laura. I'm not only new at this blogging and messaging I'm new with Lupus. I found out Monday when I went in with a rash on my face and alot of other complaints. I'm not gonna to reveal my medical history now, just mine. I'm 27, married with two boys. I live in a REALLY small town in Idaho called Aberdeen. I wouldn't be suprised if no one has heard of it. The town only has a population of 1500. Anyways if you got any for me about me questions I wouldn't mind answering them. Or if you would just like to chat and get to know eachother that would be great. Thanks for the support for a scared newbie (here and with lupus.
02-04-2010, 08:55 PM
welcome to our family. Just being diagnosed a few days ago, i am sure you are quite frightened about what is going on with your body. Please know that we are always here and ready to answer any questions. And, if you need to, we are here for people just to vent.
Did your dr. start you on any medications? If so, tell us which ones, and we will be able to tell you about the medication, what it is supposed to do, and about any possible side effects. Also, there are a lot of people here who can help you control lupus symptoms. We have all had to lean on each other to help us when we face new symptoms and discomforts. We are all happy to help.
Take care and enjoy your little ones.
02-05-2010, 10:38 AM
Welcome to our family. Mountaindreamer has already given you some information and offered to help you with questions. Please know that we are all here to help you in any way that we can. Being so newly diagnoses, I am sure that you have lots of questions and are feeling a bit overwhelmed right not. That is completely understandable and we want to help navigate through all of those feelings.
This is a place filled with kind, knowledgeable, understanding and compassionate people. Please know that you are safe here and that you are not alone. Again.....welcome!
Peace and Blessings
02-05-2010, 11:04 AM
The doctor only put me on five days worth of prednisone. He wants my face to flare up again with the blisters before he does anything else. Here's what's been going' on before I was diagnosed and see if this is wired to any of you or is just me still in shock. I've been having breathing problems for a while. They've written off as asthma and have given me inhalers. The inhalers had worked for a while then I started coughing all the time. Not the normal ah-ha cough it's more of a hack to the point where I lose my breath and sometimes I have put my head between my legs to get my breath. So I went back in the doctor gave me codeine cough syrup and send me on my way home. It was in about June when I had a mild cardiac infraction. They sent me to a cardiologist they poked me prodded me took all sorts of fluids and came to the conclusion nothing was wrong I just had a mild cardiac infraction for no reason. How can you have now reason for a mild cardiac infraction? About Oct. I started vomiting allot and lost 30lbs with in a week. This is when I started noticing my hands and feet visibly swelling. So the doctor decided to do blood tests ct scans mri's barium swallow tests. Normal. He sent me to gastrointrologist. I had the scopes done in both was (NOT fun). Everythings normal. Nov. on my birthday I noticed I was losing my hair. Not the normal amount of strands here and there. It came out in clumps the width of a pencil. I ignored it thinking it was the Depakote or the Lithum I have been on for 4 years. In Dec. I started having REAL big breathing problems. I would lay down to sleep at night when I would feel like the air in my lungs was being vacuumed out of my lungs and my throat would be visibly swollen where my tonsils are. That happed for three night and days until I called the doctor. He told me it's a virus gave me a breathing treatment and sent me home. I mentioned that my hands and feet were swelling to the point where I couldn't walk, I couldn 't unclench my hands. He looked at me and said "Do you want a water pill?" That was it!!! I wasn't going back to the doctor. Well until I had to Monday. I held off for two weeks. My face had blisters across the cheeks. Then they started peeling looking like a first degree sun burn, including under my nose in that dip. What made go in was my legs. They started getting this bad pins and needles sensation. No blood test were done. He looks at me and my rash and says you have lupus. Is that a little wired or is it just me?
02-05-2010, 11:06 AM
Thank you Saysusie I feel that I'm cared for and people like you understand what I'm going through. I appreciate it .
02-06-2010, 12:05 AM
Welcome to WHL!
This is a site full of open minded, welcoming, and supportive people. I hope you like it here.
Reading your posts here and on your other thread, I can totally see why you are scared and I have to say, your doctors seem to be taking these serious symptoms quite casually. If I were in your shoes, I would think about finding a new doctor. From what you said, he did not take the time to treat you. He just tried to give you a pill to get rid of your symptoms. Some questions for you after reading your post - Why did they first diagnos asthma? Was it just b/c of shortness of breathe and if so were no other options for a cause explored? Was there a breathing test done? Did you see a pulmonologist? Did they ever order a chest xray for you? Did they do a CT Scan or an MRI of the chest? The way you are describing your lung symptoms is not normal. I have lung issues myself and know how frustrating it is to feel like your lungs are not functioning. What about your cardiac symptoms? Did the cardiologist give you a halter monitor or an EEG or EKG? Did they give you a stress test? You're 27 and just randomly had a minor heart attack and from what you said the doctors seem to have vey casually chalked the reason for that up to "we don't know". Do you have a history of heart disease or a family history of it? Do you have another primary diagnosis that would increase your chances of heart disease, like diabetes? What are they doing to monitor this situation with you? Have you seen a rheumatologist? I definately agree with you that you seem to have some sort of AI issue going on from what you said, but I think you need to ask some more questions and get some more answers.
To answer your question on another thread, I don't know for a fact if there is a connection between Lupus and your previous diagnosis or those medicines you are taking and flares, but a lot of us have "chemical" and "environmental" flares so I think it would be a good idea to bring these thoughts up with your doctor. Especially if you have different doctors perscribing different meds and treating you for different things. I also can see on a quick google search that there seems to be a link with lupus in the central nervous system and mood/psychotic disorders.
Best of luck to you & feel free to drop a PM if you would like to chat.
02-06-2010, 07:46 AM
Welcome to the site - you could not have found a better place to voice your concerns and to find loving compassionate people who are also VERY knowledgable. ALL of your symptoms could be from lupus, but I must agree, your doc doesnt sound like he knows enough about it to treat you properly. You may want to make an appt with a rheumatologist as soon as possible. You said you live in a small town, so maybe there is a university/teaching hospital somewhat nearby? I hope this is a possibility for you, and if your insurance requires a referral, then tell your doctor. You can demand a second opinion/specialist.
Like the others before me said, Im sure youre very overwhelmed and scared...Im so sorry you have to go through this. But know that this disease can be managed with medications, and that you have alot of support here when you need it.
02-06-2010, 03:26 PM
Welcome to WHL!
I agree with the others. You really need to see a rheumy and get some blood work done. If not Lupus, at least some of your symptoms sound like Sjogren's and Reynaud's. Keep reading on this forum and on the internet and arm yourself with some knowledge, then ask some hard questions when you see the doc.
02-06-2010, 09:03 PM
Sandy the doctor diagnosed me with asthma because I came in coughing, I should say hacking, all the time with a rattle. I really have and had a hard time breathing. When I cough my husband and my father both chime up at the same time and say "Cough medicine." Yuck! There were no breathing tests done just a cold stethoscope on the back. I've never seen a pulminologist. The doctor (or should I say clinic) didn't seem it to be necessary. I have been through chest xrays at the hospital/hospice in the small town over. The xrays came back just fine. Nothing wrong with me.... yeah right. They did a ct scan of my whole abdomen up to my throat. The only thing that came back wrong in the picture is that I have an aberrant subclavin artery under my right clavicle. Oh and a missing gallbladder. That was taken out some while ago because it went necrotic. I know somethings wrong with my chest. It just seems like I'm hitting a brick wall every time I see my doctor or other doctors in the clinic. My dad thinks it might have been my stupidity when I was a teenager (use to do drugs to self medicate). I don't think so. I've read in medical journals and in studies (in college for a speech for speech class) that if the person quits smoking or doing drugs such as marijuana that the lungs will heal themselves over time. It's been ALONG time since I was stupid and my lungs should have healed by now. Not get worse. With my cardiac symptoms the cardiologist had me hooked up to an EKG it said I had a mild cardiac infarction. Then they did some ultra sounds for about 45 min to an hour. It came back fine. When they did the stress test the physician that was there said that my weight was the problem "she's obese and can't finish walking up the incline." Yeah I might be a big girl but I chase after two kids and walk about a mile a day to get my oldest to school and back home. I'm very active with my 3 year old we have dance time. ERRRRR I'm sorry I'm ranting. I get irritated with doctors that think just because I'm big I'm lazy and I don't eat right. Honestly I don't know if I have heart disease on my mothers side (don't know her) but I know on my fathers he does. My uncle John has heart problems due to diabetes and the doctors say that I'm borderline diabetic. What the doctors are doing about this situation is telling me to come in when I don't feel well and pushing me aside. It might be that I have no insurance. I haven't seen a rhumetologist yet. I know I need too.
Laurid I appreciate the sholder that you offer. I think I'll need it more than ever.
Marla I will take in consideration that it might be sjogren's or reynauds. I will arm myself with the knowledge that you and others have provided me.
I just want to say after writing all this out. I appreciate all of you that write and take the time to read and respond. It helps me cope with whats going on physically and emotionally. Thank you all.
02-07-2010, 12:53 PM
Welcome to the forum.Im sorry to hear what you have been going through,but everyone here are lovely and very knowledgeable,so we'll all help you through this hopefully.
02-07-2010, 01:11 PM
thank you for coming back and providing more information about your plight....what a roller coaster ride you are presently experiencing...i am so sorry that you can't seem to find proper medical attention. I strongly agree with others...even if it means taveling, i think you should find a rheumatologist. There are some of the lupus medications that actually help with some of your other symptoms....example - swelling - my rheumy put me on methotrexate, and the swelling in my hands and ankles went away. There is another medication that also helps with the skin issues associated with lupus or another auto immune disease.
Please keep talking to people here, so many of us experience different symptoms, and have found various treatment options....
I know the heart stuff frightens you, breathing issues go along with lupus as well.
02-08-2010, 08:05 PM
wow that is quite a time you have had of it lately. I can sympathize that it is a long frustrating journey that often seems to fall on the deaf ears of doctors that just can't find anything wrond with us. I agree with the others. If you can get to a rheumy, go. I think we (people who are very intune with our bodies) can tell much better than others when something isn't right. I think you are probably right and not crazy that something is going on with your lungs. If you can get to a pulmonologist they could help you too. Like someone else said, you have to be willing to search for the answer and ask questions until you are given one that fits.
02-10-2010, 07:04 PM
I'm sorry that I haven't been on for three days... OH boy I've been so run down I could barely move and take care of myself and my boys. Oh well no point in whining about feeling like hammered owl feces. I figure I'm going to greet the day like it's my first. I'm going to upbeat and happy no matter how bad things seem to be. That's what all of you have taught me so far. I'm going back to the doctor soon. I'm flaring up again. (my face is starting to blister again bladder infections and now I really don't feel like eating much.) I'm going to ask him to refer me to a rheumy and a pulmonologist. Sandy thank you for listening ... well reading... what I have to say. It's nice to know that there people like you and so many others out there that are helping people like me. And yes I'm going to kick and scream... yell and throw fits... until someone is willing to listen and help (doctor wise).