Hi Everyone!
I forgot that the month of April is sjogren's awareness month. Yes the same purple ribbon as lupus and for good reason.
Along with lupus I was diagnosed with sjogren's (show grens) about 4 years ago.
Approximately 30% of people with lupus also have sjogren's as a secondary autoimmune. The primary signs of sjogren's are constant dry eyes, dry mouth, difficulty swallowing or speaking and extreme fatigue. Sjögren's syndrome have an increased risk of developing cancer, specifically non-Hodgkin lymphoma
In both sjogren’s and lupus, there are high levels of
antibodies (proteins produced by your immune system that are meant to
attack germs) called SS-A and SS-B. Having high levels of these
antibodies in your blood is a sign that your immune system isn’t working
as it should. Both diseases share similar immune system pathways. In both, the immune system becomes overactive and attacks the body’s own tissues and organs. These shared immune pathways help explain why lupus and sjogren’s
disease can occur together, why symptoms may overlap across multiple
organ systems, and why diagnosis can sometimes be challenging.
So with all of the things that lupus already attacks add sjogren's to make it doubly difficult.
Autoimmune diseases often do not occur in isolation. Many people with an
autoimmune disease have more than one autoimmune disorder, a pattern
sometimes called autoimmune clustering or polyautoimmunity.
I don't know where I'm going with this post. I'm very exhausted and my body hurts. I think I just want all of you to know that people with autoimmune are not weak, we don't want pity. We just want to be treated like everyone else.
Learn something new.
ReplyDeleteThank you for sharing this post-I was not familiar with this disease
ReplyDeleteFeel better soon Nicole-Christine cmlk79.blogspot.com
ReplyDeleteBecause of my eye they are trying to dig into my inflammation and immune system.
ReplyDeleteBTW--Keytruda (immunotherapy I had for cancer) also is known to attack good cells so I am familiar with that issue for sure.
I am still processing bad news I got on my eyes yesterday. I will adjust. Won't give up. :)
Thanks for the information Nicole...
ReplyDeleteUnfortunately some people are not familiar with illnesses.
I live it every day with my husband (he is sick and is undergoing chemotherapy) from the way they treat him...
Few people know that they should talk to him normally...
Illnesses are part of our lives...
You have a double whammy then, that's certainly wouldn't be pleasant.
ReplyDeleteTake care.
Dear Nicole,
ReplyDelete"The last 5 weeks have been hell for me" sounds awful to me, especially considering that you've had recurring problems with your autoimmune diseases in the past and have also had constant worries about Mr. M's health. So this is quite an escalation.
I believe you when you say you don't want to be pitied, but treated like everyone else. But I hope you believe me that it's not easy to treat someone "like everyone else" when you know this person is exhausted and in pain. Perhaps what your friends are saying—that you don't look sick—isn't a sign of stupidity, but a sign of helplessness. Because they don't know how to deal with you. Gently, because of your pain, but not too gently, so it doesn't seem like pity... (?) Since I have several friends with severe pain conditions, I know it's a tightrope walk—not just for my friends, but for me too.
In any case, I hope that feeling of hell disappears soon!
Hugs & all the best from far away Austria,
Traude
Makes me really glad to be healthy! I hope for improvement for you soon, Nicole.
ReplyDeleteYou are hit with a double whammy.
ReplyDeleteI haven't heard of this syndrome. Sjogren's syndrome sounds like it just makes the lupus symptoms even worse. Feel better soon Nicole.
ReplyDelete...Nicole, life is rarely fair!
ReplyDeleteIt doesn't help when people tell you you don't look ill. It's almost as if they don't believe you, I hope you start to improve soon,
ReplyDeleteI've never heard of this condition before but boy, it does not sound like a fun time. I feel bad for you, Nicole, I'm so sorry to hear that you've got simultaneously flares going on right now. I hope things settle down soon, my friend.
ReplyDeleteI'm so sorry that you haven't been feeling well.
ReplyDeleteWell, I hope you can get a break. I know of another with this and it is absolutely zero fun. I've often told Rick I can handle on thing -- even a big thing -- with some grace but when two or more start to hit at the same time, it's just too much. Please take it easy, my friend. (And like you, I HATE it when people say, "You don't look sick!")
ReplyDeleteI was sorry to read that your blood work shows both lupus and sjogren's are so high ...off the chart!
ReplyDeleteSending positive thoughts and good wishes to you and a big {{{hug}}}
All the best Jan
You do have my deepest sympathies. My good friend has Crohns and Sjogrens, so I know you are suffering!
ReplyDeleteI haven't heard of this before. Sjogren's is new to me. Good to learn. Hope you are okay.
ReplyDeleteDear friend Nichole, please don’t take my word as pity because I know that you are such a strong woman who is amazingly talented and active in the all levels of life .she has power to inspire people and potential to do anything she wants to do!
ReplyDeleteI believe your feelings of sickness will pass eventually and soon by the grace of God and you will feel better again 🤞🙏♥️
My humble request is that please don’t let this phase forget you this so your inner strength can keep healing you!
Thinking of you my dear friend ♥️🫂🥹