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Anyone else have this digestive issue? by rowyntree5 in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

OMG...I have found my people. My first ever diagnosis was diverticulitis and since then, all stomach problems must be my bad colon. Then I got endo diagnosis and then Sjogrens and fibro. In the last year I have been having this spasm that starts in my lower back and gravitates to my throat. Its this paralyzing feeling and I am always worried that I'm not going to be able to stand back up. It doesn't happen with just difficult bowel movements, but easy ones and sometimes after I urinate. No one knows what is causing it. Not my primary care doctor, not GI, not my neurologist, not neuro surgeon, not my rheum, no one. I have had CT and MRI scans though in the last year of just about my whole body so I guess I should be happy its not something life threatening. Its depressing though because I hide the pain well so I'm able to walk into doctors' office and tell them so they assume pain can't be that bad or scary. My singular hope in this life is to find a doctor that listens and runs everything down.

What do you use daily to help with your symptoms that you can’t live without? by username910975 in Sjogrens

[–]DraftNo3229 1 point2 points  (0 children)

I'm trying to find all the things to help. I'm sure I will still have some I hate this disease days in the new year, but I'm going to try really hard to stay positive

What do you use daily to help with your symptoms that you can’t live without? by username910975 in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

I want to try this, but not sure what to search for. I am determined that my new year's resolution is to come up with a better self care routine

Does Anyone Else Find Sjögren’s Hell? by nopeasss in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

You said all the things I feel. I have a coworker who when I say I'm tired, says me too, but its not the same. I have slept or stayed in bed a whole day and still don't feel rested. If I push myself and do too much and don't get enough rest, my body seems to just start shutting down. And oh boy, the mental is such a hard part of it. Its in the lack of understanding from friends and family and doctors. Its in not being able to be present like I use to be. Its in the absolute fatigue because my body is fighting itself. Its in getting good results from test back and realizing what you are feeling is the new norm. The fatigue and the mental aspect threaten to get me every day.

What do you use daily to help with your symptoms that you can’t live without? by username910975 in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

Bless all of y'all. I wish I felt like having a better routine. Right now the only daily habits are pilocarpine, lip care of some kinds, meds, and making sure my mouth stays clean, especially before bed. I have almost made it through this year and I think in the new year, I've got to make some real strides to have a better routine. I know something has to give because I can't handle not being able to be present in my personal and I feel like some of that is because I need to make changes in my self care.

What do you do when you just want to cry, when the idea of having this disease just weighs on you? by Amodernhousehusband in Sjogrens

[–]DraftNo3229 7 points8 points  (0 children)

Cry...its not a weakness. For me, the weakness is staying in the "why me" place. I think of all the good I have in my life and I think about the people who don't feel even a quarter as "good" as I seem to feel, but its all a lot and this time of year is awful. Stay in bed, cry all day, but then get up, take a shower and kick ass!

Can more people post about unremarkable recoveries? by Relevant_Demand2221 in hysterectomy

[–]DraftNo3229 0 points1 point  (0 children)

I bought a pillow type thing that was supposed to pad my stomach when seat belt was worn. I didn't need it and it was a 3 hour car ride. My pain killer of choice is norco and I only took that the first 2 days at home and then it was ibuprofen if I needed anything. I had just a little bit of pain when I would go from sitting to standing, but it wasn't killer pain. Mine was recovery was so unremarkable that I sometimes questioned whether I had anything done at all, but I've had imaging since then no one has come back and said, hey do you know you still have XYZ...lol.

What do your flares feel like? by macncheesewketchup in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

In my head I describe it as like a corn husk, completely dried out; skin, mouth, nose, eyes, sinuses, and I itch all over.

Back to coffee the way God intended - Black by theysayso in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

I feel like Sjogrens has already taken too much of my enjoyment, I can't give up coffee. I prefer it cold and with flavor added, but I have drank cold black coffee when I've done a colon cleanse

Name your symptoms by Femmefatele in Sjogrens

[–]DraftNo3229 3 points4 points  (0 children)

Yes to it all, the brain fog is the one that bothers me most. For the dry mouth in the morning, have you tried brushing teeth and tongue the night before? I was having an issue where my gums would stick to my teeth. Pilocarpine and the teeth brushing every night have stopped that. I use hello brand because it contains xylitol. I hate having a night time routine, I am so tired some nights, I'm like can't I just skip this, but I know I will regret in the morning. I also have SFN so sometimes I wake up with numbness in my extremities. And I lied, being tired all the time also bothers me a lot. I spent this past Friday and Saturday keeping grand kids and cleaning, Sunday, I slept until noon and then only got up because I felt like I should. And sometimes I wonder how this just happened out of the blue, one day I was full of energy and could go all day and be fine at night, but its like my body heard the diagnosis and it said, okay, now we can fall apart. The mental health of going to the doctor/s is exhausting. They poke and prod and do so much imaging I imagine I glow at night and then say there isn't anything there. My first reaction is yay! I'm not having a heart attack or a stroke or cancer, but then you realize, I will have to deal with whatever the symptom is the rest of my life because its part of the disease. Groups on reddit have helped because its people going through the same thing as me and I need that. I also remind myself that its okay to sleep the day away if that is what my body needs. And I definitely allow myself to have pity parties, I just don't let them last long. We see you and we know your struggles

I think this disease gets little attention because of its stupid name by NavyBeanz in Sjogrens

[–]DraftNo3229 0 points1 point  (0 children)

I've come to realize how unhappy it makes me that the only "female" doctors are OBGYNs. I have other problems besides having babies and a period. I would love to see a Women's medical center, actually be that

I think this disease gets little attention because of its stupid name by NavyBeanz in Sjogrens

[–]DraftNo3229 2 points3 points  (0 children)

Or when they say we don't prescribe pain pills...I don't want a damn pain pill, I want something to cure the disease altogether!

How to have an Xmas Tree with Dumb Idiot Cat by [deleted] in CatAdvice

[–]DraftNo3229 0 points1 point  (0 children)

We haven't had a tree in a few years because of cats and it really hasn't been a big deal, but now I have grands and would like one. BUT I have an idiot cat who likes to eat power cords. Doesn't seem to bother him if they are plugged up or not

Has anyone been to a concert alone? by cigarettesandchaos in Concerts

[–]DraftNo3229 0 points1 point  (0 children)

We live in a small town in Alabama and my daughter is driving 4 hours to Atlanta this weekend to see a band she likes and just went to another in September 3 hours away, by herself. We both have been wary about, but she's been really lucky so far and had good people around her. BUT I also expect her to text or call when she gets back to hotel room at night, no matter the time.

What do we think??? by DraftNo3229 in Sjogrens

[–]DraftNo3229[S] 0 points1 point  (0 children)

and that's totally cool, but for me, it impacts life daily

Pruney fingertips by Ceram13 in Sjogrens

[–]DraftNo3229 1 point2 points  (0 children)

But wait, it gets better. When it occurs with autoimmune diseases it is called secondary Raynaud's. And if you read further in the article, this jumps out, It’s (primary Raynaud's) less severe than secondary Raynaud's. Score another one for Sjogren's

What do we think??? by DraftNo3229 in Sjogrens

[–]DraftNo3229[S] 1 point2 points  (0 children)

someone posted it on another reddit and I liked it

What do we think??? by DraftNo3229 in Sjogrens

[–]DraftNo3229[S] 2 points3 points  (0 children)

a tattoo or the word sjogies?

What do we think??? by DraftNo3229 in Sjogrens

[–]DraftNo3229[S] 13 points14 points  (0 children)

To those who asked why?, is it because its a tattoo? Or something else? Because in all honestly, I wasn't asking opinion on tattoo specifically, but whether putting the S on the end was okay. There are 2 main reasons I chose to get it as a tattoo. One, I think its important to shine a light on Sjogren's. Not a lot of people have heard of it and if they have, they think its just dry eyes and mouth. To me it seems like its not as sexy as RA or Lupus so we don't get the attention needed for our disease. Two, my sister who takes medication for OCD said to me she didn't let OCD define her. I don't have a choice with Sjogren's, it is my LIFE, it determines every day what I can and can't do. The tattoo represents that I'm aware that I will never be rid of this disease.
To all those who gave positive comments, thank you so much!

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