Just courious, is anyone planning to attend the LFA Advocacy day in DC march 2-3? I am local to DC and would like to go but not alone! Anyone been in the past?...
Thanks everyone! The fatigue is getting the best of me but my spirit is returning. It's crazy just how much your mental attitude can make you physically feel! I have agreed with myself to take it...
I'm very tired but wanted to let each of you know I appreciate your thoughts and encouragement. Until tomorrow...THANK YOU!...
I want to yell at the top of my lungs I QUIT! I'M DONE! I CAN'T DO THIS ANYMORE! Why can't I quit? When is enough enough? I feel as though I have all the responsibility on me...and I can't keep on...
I too have had those very scary senerios! I have experienced total loss (except my eyes) and from the chest down. I have seen my Rheumy, primary and neuro...no dx or explanation. I am courious as to...
Sorry I haven't updated sooner...No IV yet!!!! My Neuro and Rheumy are at odds.......and here I am in the middle, not knowing who to listen to or what to do if anything! I hate to admit that I may be...
I was prescribed Provigil for the exhaustion as well. My insurance will not cover it and I can not afford it. With there being NO genaric, has anyone been prescribed something else, what were your...
Anyone have experience/knowledge of IV steroids @ home? I should know more next week....
I also have had various neuro type symptoms that come and go. I haven't been on for awhile but last week I had a thorasic MRI done and an EMG on Wednesday. I am being told that I have I have...
The Lupus Foundation here in DC has October as the Lupus Awareness month, to be honest, breast cancer has it beat...I have seen one commercial re: Lupus and no purple, no solicitors calling:) I have...
Puccini, Your right, cant give up! Where are you located? Johns Hopkins has worked a deal with me...based on my lack of income!...
Well, take a deep breath and remember your only as good of a parent as you believe you are. We have all heard our parents say "I did the best I know how". Do the best you know...Your right to walk...
The SS process is a tough one. On my first and second apps I became exhausted and gave up. I am trying hard not to let the same happen with this denial. SS is the only option I have at this point....
Thanks for your suggestions. I have had no luck with attnys here in Manassas, VA but the Lupus Foundation has given me some leads in DC. I will attack those this week...thanks...
Hey Steph, Wow...we gotta talk! I can't figure out your email either...Mine is SSDore9240 at aol dot com Can't wait to chat! Steph (post edited to help disguise email address from web-bot which...
Hey Steph, I also have just been told about being at risk for clotting issues...I go back to Johns Hopkins in 2 weeks and will know more...I will try to remember to let you know what I learn. From...
I have had similar pain on the left side...I was seen in the er two times. Once they said pleurasy(?) and the other they said inflamation of the lining btwn lung and ribs...same thing I believe. They...
Well, It's official...DENIED AGAIN! Suprise, suprise! I tried to prep myself for the denial but I was still upset when I read the letter. I am searching for an attny now. Do any of you have...
I have also taken the Tramadol upto 4 3 times a day...they didnt seem to help...I still have a bunch! Good Luck...
I thought they did....most of them were right after an accident...I thought it was stress. Years later I am able to look back and see little tell tale signs that there were issues going on with my...
Hello and I hope the other posts have helped...they help me daily! Just courious, where are you located? If you have local support groups, you may want to go without your daughter at first. I found...
Drug induced...that is a possibility, I believe the symptoms should go away though. Im not sure!? Have you been to the Lupus Foundation website yet? I thought my symptoms came on fast...I just didn't...
I too, have the joy of numbness! Always in my left foot and hand...usually a strong tingle which can progress to loss of feeling. At times in my right hand and face. Neuro's just say neuropothy. My...
I have been told I have calcium spots/deposits. I do not recall being told anything other than the name and not to worry about em. They are tiny and on my face....
Thanks for all of the kind words! I am still dwelling in my living room, its kinda nice! I can see my bird feeders and am fairly comfortable! I am waiting for it to rain really good to be as sure as...
Thanks guys! I flooded again Saturday. Expecting that this would happen considering the problem had not been fixed, I looked at the mess, shook my head and shut the door...damage is done, no point...
[sup]Boy, its nice to be back online! I had been feeling great...so great that I was just going and doing like I hadn't in a long while. The entire time I had a lil voice telling me..."slow down,...
Hello, I have to say Ginny, Im following in your foot steps! I still have a very difficult time telling which it is the SLE or the FM!? King I'd seriously check out the possibility of the FM. When...
I have very similar vision issues. I, like you tend to wait till its bad before checking it out...I think Ill call my dr and see what she thinks, now that Im not the only one! Good Luck!...
Marie, Re: your moms probs and Plaq...were there distinct changes the eye dr could see or just a worsening of vision? Mine just keep getting worse and worse. When I am in a flare...crazy things...
I also take the generic...I hadn't thought about that. I am having alot of reflux type action going on as well. My stomache stays wooozy and pains when I eat. My bowels on the other hand, work on...
I understand. I'm still a bit angry and confused myself but I can say that I do understand what your feeling! I know the exhaustion, feeling like your not parenting to your liking, shaking, pain,...
Hello, Im usually in the Lupus forum...I have used the patches for about 3 years. They do not work immed. for me. I use them for neuralgia pain. They dull the needle feeling but do not take them...
Ginny, Ive been there...It stinks but your right...FM isnt causing major damage! Keep that attitude, even when its bad! Im glad the tramadol is working for you, I didnt seem to get much relief w it....
Wow! I applaud you! In my previous life....I was a Certified Brain Injury Specialist. I worked with Autistic and Brain Injured children at school and in thier homes, 1:1 ratio. I have a good idea...
I currently am taking the plaq in the am and pm with food. I'm not sure that it is enough food though. I have no desire to eat as it only makes the sick feeling worse. I plan to try to actually eat...
Thank you so much! I hadn't thought of the volunteers as a possibility. I know that all of this has and will help her see the bigger picture and appreciate what we do have. Thanks for your help and...
Cheeki, Im glad to see you are now able to access the forum. I have only been here a few days and finally feel like someone else understands! Take care and hope you are good as new as soon as...
Does the Plaquinil make anyone else feel like yacking all the time, even after months/years of use? I still feel yacking and I have been on it for over 3 months, this time. Last time I took it for...
My daughter has severe anaphilactic food allergies. The school that she attends is the school that she started K in. Once she started K the school district had to make special arrangements with the...
I'm interested in other peoples coping techniques concerning raising a child/children on your own while sick, especially keeping up with school. I am raising my 7 year old daughter alone. She is...
Hi Domanique I have experienced very similar symptoms. The er did the same for me. Prednisone! My favorite! It did work though. Good Luck and feel better soon! Stephanie...
Fortunatly my doctor mails them to me with little notes indicating problem areas. I usually recieve them on Saturday and she calls Monday morning to discuss them. Often times I will have had a chance...
Thank you Pat! I'm headed to bed on a positive note!...
My hair doesnt thin all over so much. I have distinct bald spots. I looked into wigs and own alot of hats. I have grown to love em...my daughter rubs them and calls them my "lucas" spots :)...
Thanks carol...I just posted a bit more about myself...but i forgot on which thread....I have had 5 pred. tapers since Feb and 2 iv....rheumy wants me off for now. I am sensitive to any of the...
Yep, sorry to hear you have em too...I was hoping I was the only one! Yeah, they are crazy! Ive had em so bad that they were all over and I couldnt lay still and had to be transported to the er. My...
Thank you to each of you! Your kind and supportive words really do help! Mentally and emotionally I do feel a bit better today. Physically, thats another story but I am finding that a positive...
Thanks Carol! I hope my replies aren't too "Debbie Downer"! I do have good days but the past week has been one of the hardest yet. I do enjoy reading everyones comments and supportive words. One day...
I have found all of your entries very helpful, thank you. I am going to check into the pain mgmt dr asap. I had a very bad week and rushed in to see my primary (rhmy 2 hrs away) for severe...