Although you guys and gals are probably great people I don’t want to share this illness with you! (Sorry)! I haven’t “completely” been diagnosed with Lupus but I do have a positive ANA and positive Smith Antibody. I never seem to feel good and I’m always tired. I constantly get sores on my tongue. Not “ulcers”… More like pimples or inflamed taste buds which are painful. Seems as soon as I finally get rid of one I get another. Idk if I have Lupus. Haven’t seen Rheumatology yet.
No one WANTS to join us! Believe me; we are ALL hoping you'll be lucky and not be sick. But it sounds like you do have something going on. A diagnosis, often, can be the first step toward feeling better and feeling more "normal" daily. If you do turn out to have ANY auto-immune disease we will be here for you!
Haha! I know no one WANTS to join the Lupus support group, but I’m afraid I probably do have this illness. It’s not confirmed and obviously I’m still in DENIAL. Are you familiar with Elizabeth Kubler-Ross’ stages of Death and Dying? It is the same for anyone with a serious or chronic illness. And “Izzy” I read your Obamacare denial post. I’m at a loss…I’m sorry. How is that even possible in this supposedly “everybody who needs care gets care administration”?
Chevelle said:
Haha! I know no one WANTS to join the Lupus support group, but I'm afraid I probably do have this illness. It's not confirmed and obviously I'm still in DENIAL. Are you familiar with Elizabeth Kubler-Ross' stages of Death and Dying? It is the same for anyone with a serious or chronic illness. And "Izzy" I read your Obamacare denial post. I'm at a loss...I'm sorry. How is that even possible in this supposedly "everybody who needs care gets care administration"?
I'm sorry you are feeling bad. This is a great sight. If you want to talk or just "listen". I have sle. had terrible mouth sores til I started on plaquenil. They are gone now. I would see a rheumy. I also have a team of specialists. My fatigue is getting worse, that comes wit the territory. Just curious, why don't you want to "share"?
Take care of yourself.
Cindy
Welcome.....I know you don't want to be sick especially with Lupus no one does. I effects every aspect of your life. That being said if you do have Lupus we are here for you, to support you , educate you, and just listen. I hope the test is negative but if it isn't take care and know we are here for you God Bless Julie
Thank you everyone who replied. I did feel ashamed of my post after I realized what I said! Obviously no one wants to be sick. I am afraid of a new diagnosis and just hoping and praying I don’t have Lupus…as I’m sure you felt the same before realizing that you actually have the illness. People don’t know about Lupus. Did YOU or did you become the expert once it became a part of you? I am learning and comparing my symptoms. I have an appt with Rheumatology scheduled. Is Lupus manageable or is it a debilitating disease?
Hi
I didn't have a clue what lupus was til I ws diagnosed. I'm not sure I know what it is now It's very complicated no two people have the same symtoms, or respond to the same meds.Try to learn all you can.
Take care
Cindy
Hi Chevelle, sorry that the sores are in the mouth , they only last for a day or so they will go away . Also yogurt helps me !. Oh I 4got welcome to our family …Beverly L.
Yes! I actually help new patients in my area deal with new diagnoses and we talk about the five stages!! I love that you've already heard of it! Honestly, we all still go through all of those stages every time a new symptom crops up. They might not be as extreme cases of denial, anger, etc. as the first diagnosis, but I think it still smarts a little for all of us:/ I guarantee we are all sending hugs and want to be there for anything we can! Sigh, as for the government assistance, all I can say is, even though it's a LOT better than before, it's still bureaucracy! I just have to keep fighting through all the red tape!!
Chevelle said:
Chevelle said:Haha! I know no one WANTS to join the Lupus support group, but I'm afraid I probably do have this illness. It's not confirmed and obviously I'm still in DENIAL. Are you familiar with Elizabeth Kubler-Ross' stages of Death and Dying? It is the same for anyone with a serious or chronic illness. And "Izzy" I read your Obamacare denial post. I'm at a loss...I'm sorry. How is that even possible in this supposedly "everybody who needs care gets care administration"?
I too hope you have nothing to share. Maybe we can talk about your Chevelle instead. Hopefully it's an SS? -Jeff
Chevelle said:
Thank you everyone who replied. I did feel ashamed of my post after I realized what I said! Obviously no one wants to be sick. I am afraid of a new diagnosis and just hoping and praying I don't have Lupus...as I'm sure you felt the same before realizing that you actually have the illness. People don't know about Lupus. Did YOU or did you become the expert once it became a part of you? I am learning and comparing my symptoms. I have an appt with Rheumatology scheduled. Is Lupus manageable or is it a debilitating disease?
Lupus is both depending on your S & S. Some days it is manageable, other days it is debilitating. As you can see as you read the website, it really affects each of us so differently. I sometimes tell people that it can change hourly . I always try to stay positive! I do cherish "good" days or weeks. I find that the weather really affects me, so I do watch the weather patterns and try not to get a chill ( it tightens every thing up.). Like my grandmother used to say , I know when it is going to rain, my rheumatism is acting up. LOL. Good luck with everything and I agree with izzyilluminates, a diagnosis is the first step.
I have lupus erythematosus and when i found out I have it it scared me to death I rarely have good days anymore but am trying to deal with it I believe god is helping me day by day he will give you strenth too to go through each day take care