I sleep like the dead during fatigue storms. I think I'd be scared to make myself sleep harder? I do however take Ambian during times of pain and illness. Works like a charm! Lyn ever want to borrow...
I can't believe I am typing this a second time! The thread walked off on me ugh It has been a while since my last post and I am not sure if anyone remembers me. I wanted to share what's been taking...
I have been gone for quiet a while as I had a flare that landed me in the hospital for 2 weeks. I came home on TPN and VNA service. During the flare I had my gallbladder removed as well and low and...
lol Thanks for the kind words Melissa :). This is the first for me. I have a swollen hand and swollen foot . The pain starts in the mid thigh and travels down. My leg feels weird! It feels heavy and...
I am having the worst night of pain I think I have had yet. My right hand hurts to even hold a glass of beverage. The right leg from the knee down is excruciating. I took a perc and Motrin which I...
After a few bizzare attacks of "asthma like symptoms" one of which required me to be intebated I was sent to a pulmonologist. He ran some tests ie. CT scan, PFT's and others and he found I do not...
I hope this is going to come across the way I mean for it to . As much as we love our children and want to do the best for them sometimes the best isnt the biggest. I do not take upon myself what I...
I am happy you have a new chance at transplant!!!!!!!!!!!!!! Mazel Tov!!!!!...
Glad you came out to say hello Alicat! /community/emoticons/turn.gif Rosie ,It feels better right now than it did before. I have an odd sensation though . It feels heavy like I need to cough and when...
lol Lynnwood, I ABHOR shopping. I find when I walk in stores it aggravates my joints and makes them hurt from, I have always assumed ,being on my feet too long.In addition I have been told walking on...
I went to see my first Rheumy and he was a complete horses a@@. He listened to me with total condescension and told me I looked good and therefore he had a hard time believing I was sick. I told him...
Thans Barb, Robin. I am feeling beter today. I woke up coughing like a nut around 2 am with quite alot of mucus coming up. I assume that shallow breathing probably left my lungs a little sticky,...
Hi Leigh, I had some of the highest Ro/La my Dr. had ever seen. I believe it is most associated with Sjogrens which I do not have but also an indicator of sun sensitivity for Lupus. They are also a...
I wish I were super but not even close. I am exhausted majority of the time . Oldhippy I am learning as I go that life isnt what you ever expect it to be. I smile and grin my way through it or I tell...
I have been on 7.5-10 mgs for a long time now. I flare each time I drop to 5 mgs. Rosie I want to tell you how much I appreciate you on Healingwell. You always have a kind word . xoxox...
Robin? What does your pleurisy feel like? I have never had this before and I was surprised at the Dr.'s quick response that she thought thats what it was. I am not fond of steriods and she is ULTRA...
I assume many of you have had this condition? Dr. told me it is fairly common in Lupus. I have been having pain in my chest when I take a deep breath for a couple of weeks but no wheezing and it is...
Ginny and Rosie, The kind words go a long way. It is nice to be able to know that someone out there understands this disease and the impact on peoples lives. Thanks so much for responding to my post...
Its been a while since I have been around as my 13 year old has a confirmed dx of Lupus. She is seeing the same Dr. I am treated by at JHU. I now have 3 children with auto immune conditions. I do not...
SSDore I tried to find a way to email you and it seems you havent posted it or I havent figured out healwell yet. I also go to JHU and am a patient of Dr. Petri. My daughter was just dx with Lupus as...
I think JHU's Rhuemy is like your nephrologist. She isnt like so many of the Rheumy's I keep reading about on healingwell....
rotfl Lynn they do have awful handwriting!!!!!!!!!...
right, I get the slow diagnosis as they want to be ever so careful . Its the un-diagnosing that perplexes me....
What are you using for sunscreen? I am using sun block and even if I get into the pool I suffer miserably! for at least a week afterwards. This time around I had a rash combined with weird itching....
I have been watching repeatedly how many of you seem to suffer with your Dr.'s. I dont understand the Diagnosis process in which they decide you have a disease and then " take it away". I asked my...
Yep! Had it in both hips. I had cortisone shots in my bursa sacks and oh my what a relief!!!!!!...
Might not be Lupus. I have 4 kids also. My oldest and youngest were spared for now. My 15 yr old has Crohn's , JRA and Interstitial Lung disease. Guess what his first symptom was? Yep!!! Leg pain. He...
Thanks Barb If thats what she means then its the same for cancer, IBD ect....... There are so many diseases that would prevent life insurance or at least create premiums one cant afford. I was...
I dont know how to send just you a message on here? "right combination of meds really does take some trial and error. Don't give up!! You'll get it. Most of us do not press for a definitive...
It doesnt itch constantly. Its in waves. Today I was daring and decided to scratch my head and see if thinking about it set it off. NOPE. If it doesnt itch....well it doesnt itch. Seems to revolve...
I am going to scratch myself into a monkey I swear!. I am used to being itchy on my skin from driving in the sun or whatever. I am used to some scalp itching now and again. I am NOT used to this...
I got a copy of my urine report. Enterococcus is the bacterium and I also discovered I have kidney stones. Calcium Oxolate crystals were in my urine. Before last summer I didnt have a thing wrong...
I have been having numerous urinary problems and now also seem to be having UTI's . This is my third in a short span of time. Urologist couldnt find a darn thing wrong. I know how you feel. It sucks!...
They cant be sure you dont have bacteria in your urine if they dont grow it out. It never shows anything with the exception of 2 mild UTI's in a year. I have had numerous cultures and urine checks. I...
I am taking the script version of Pyridium which allows you to take twice the amount as over the counter in one pill ( this amounts to cheaper ). I had asked about spasms and they told me that I...
Lynn I am a year into this. It all started with the Lupus flare from Last Aug....
Thanks Rosie!!!! Can I tell you that I dont believe it is IC? I have spoken to many people who have it and my symptoms are very diferent. I feel like I have to pee all the time and when I go it hurts...
I have asked this before and didnt get much of a response but I am going to ask again. I am having horrible problems with my pee!!!!!!!!!!!!! I have periods of time when it burns constantly. I feel...
I find it interesting Barb that they want to treat you with Humira. The anti TNF blockers a problem for any Lupus patient....
Razzle, Joan and I joke about the Lyme's deal daily at this point in time. Its like disease of the day! They have tested me enough for it. Seems like first line test. The Lupus question was on the...
Rosie I used Entocort for quite some time and it worked very well. I tried asacol and it was a no go . Colozal is the drug of choice but to be honest I cant get off steriods and I think that is my...
Well....I have a hard solid Dx of Lupus and my current GI feels confident in my CD Dx and the Urologist feels confident of my IC Dx. Its the new Lupus Dr questioning everyone elses Dx. I am irritated...
Thanks Illini I am looking it up....
Bill thank you so very much for the kind words and the Pdf file. I am going to check it out now. I am sorry you have suffered the extent you have. I am not thinking I have such severe disease. Stacie...
The symptoms of collagenous colitis and lymphocytic colitis are the same—chronic, watery, non-bloody diarrhea. Abdominal pain or cramps may also be present. People with collagenous colitis and...
Thanks writer!!!! going to go explore that online...
The pathology report was from a colonscopy...
Ti, I have tried asking her questions by email twice to no avail. She answers the most of direct questions but if the question is going to require alot of work and time its just not responded to. To...
[tr ][td class=msgThread2 vAlign=top height="100%"]I just received in the mail today correspondence from the new Johns Hopkins Dr. I am curious to see if anyone here has any idea of her possible...