Achieving Goals While Being Chronically Ill

I to have srojgrens for about 4years I now have developed multiple myeloma,with some symptoms being the same it's a puzzle sometimes lol

Rena, I really love your humor and your sharing of your challenges. I could relate to almost everything you said today. I have Sjogren’s too and got lymphoma from it which is gone now. I had three surgeries in my throat due to radiation of a tumor in my nasopharynx during cancer and that has made swallowing a challenge. I absolutely love the quote you included from Nightbirde. Thank you for reminding me that we are not alone in our suffering and there are still so many things to experience in life that will bring us joy, like you learning American Sign Language. I admire you so much.

I, too, have systemic sclerosis. Along with Raynaud’s and Sjogrens. SSc has damaged my lungs and digestive tract. I have gastroparesis, which means that my esophagus and stomach are paralyzed. A gastro doctor will probably want you to have an esophageal Manometry which will show whether your esophagus is functioning properly. I am sitting in an urgent care right now waiting to find out if I have an obstruction in my bowels. Yesterday I had my worst body starving for oxygen episode. The disease is certainly not fun. I can still drive and see so I take people who can’t drive to appointments and other things and I sew things for every baby at my church and anyone who needs anything involving sewing. Those things keep me from thinking about myself.

I saw at least 12 differences in those pictures

Love the positive perspective!! Press on my friends.....Seize The Day!! Be A Go-Giver!!!

As for food sticking in the esophagus, my GI told me about Esophegial guardian, chewable tablets. I got it from eBay. One can chew it once a day after the big meal. It helps. I eat two meals a day, breakfast and lunch.

Welcome back, Rena! I missed your uplifting and humorous stories over the past month, but know you are dealing with new challenges.

I see lots of differences in the mirror image. The stars around your head, the red patches on your chest and arms, lots of little details are different. IOU book instead of I have power book, the animated socks and what is that hairy arm/sock coming out from under the bed?

We definitely need to see ourselves as capable and active beings in our future. We can’t give up and let the color drain out of our lives. It’s exhausting chasing around to many doctors who aren’t connected. I need a healthcare manager!

I agree wholeheartedly that we need goals in our lives. We have to accomplish things we set out to do and challenge ourselves to keep going, even when we don’t feel like doing our PT exercises. I tend to do too much and then suffer because I didn’t rest enough. Our goals can be very small, like get those socks on - eventually! Or do a load of laundry, even if we have to wait a while to finish it.

Distraction conquers some pain, or at least gets my mind thinking about something else for a while as I get my minds engaged in - a book, a sewing project, a movie, or whatever helps me get out of the pain and that “feel sorry for myself” mode.

Thanks for sharing your positive outlook, know it’s not easy. It makes me remember that I can send myself positive messages even when I’m not feeling physically well.

It is so comforting to read about other Sjogies and know that I am not on this path alone.
I am having a problem trying to make a decision as to what to do with a dental problem. It appears that there aren't too many options when one is losing teeth......dentures or implants. Please, if anyone can give me some insight I would be so grateful. I am scared of the implant as far as the healing process is concerned, but honestly don't know it is is possibly to wear dentures, when my mouth is so dry. There has to be something out there, as I don't really want to be toothless:)

Has anyone had problems with choking while trying to swallow? It’s a the point that I don’t want to eat but my RA doctor has begged me to not lose any more weight. My meds has made me lose my appetite. Now my bladder isn’t working so well. Has anyone had trouble with their bladder?

When I am in overwhelming pain, the best remedy is watching a movie and taking Aleve with water. Comfort food is sweet potato baked in microwave with butter/clarified butter (ghee)/avocado oil and apple cider vinegar and cinnamon.

I recently quit my job which was very demanding, I got to the stage where I could barely put one foot in front of the other. I take on board giving myself daily goals, my energy levels are still low. I loved the gum story I can so relate my constant companion 😅

My problem for the past year is that I was diagnosed with stage 4 lung cancer and the treatment is causing my Sjogrens to be worse. And stupid spell check does not know about Shortens and I have to spell it three times before it accepts it! I have so much pain in my joints and muscles I'm afraid I'll lose the use of my legs but reading what you have to say helps.

Was a little funny to see the mention of "gum". It has become my best friend! Not sure how it helps my mouth stay more moist but somehow it does and it seems the "harder" I chew the better my mouth feels! I have become one of those people I don't like to see "chomping" on their gum. On another note, my dentist had recommended I get a mouthguard when I mentioned my problem with Sjogren's and so I took his advice and invested around $300 for that little hard piece of plastic (ins. paid the add'l $400!!) I followed their instructions on having it completely moistened with warm water and swishing before inserting. The inserting was not so bad but the next morning I actually thought for a while I was going to have to go into the dentist's office to have it removed. It was stuck completely and securely to my teeth. I panicked for a while but kept swishing with warm/hot water until I was able to pull it loose. It was a horrible feeling and there's no way I could possibly do that every morning and not harm my teeth which are already suffering the effects of this disease,,,,

Hello from a 72 yr old grandma with Sjogrens & Fibromyalgia for almost 40 years...had breast cancer last year and taking Anastrazole after radiation kicked off horrible side effects.....the worst is Lichens Simplex Chronicus. Losing my 2 front teeth so going to try splinting & glue. Already have an implant in need a tooth for. Just starting esophagus issues. Type 2 diabetes but been losing weight this year. I work a full-time job from home + gave a home based business. KEEP MOVING!! I walk my dogs & get up every 90 minutes till I go to bed. Do have to sleep in a recliner though....can't lay flat. Found if I keep clear polish on my nails they actually don't break off every 2 seconds! Just had cataract surgery on right eye, what a miracle. And I moved from high, dry mountains to humidity & low altitude so less use of Systane tears. Love to all...

Thank you for bringing us all together Rena. Together we are a sisterhood of strong women, who at our lowest moments will find the strength together to beat this insidious disease.

Where did you move to for more humidity?

Thanks for sharing, I'm going to try these tablets !

I knew I had Rheumatoid Arthritis for the last 15 / 17 years . I went in to get diagnosed 5 years apart and both times , the results showed autoimmune present , but inconclusive on Arthritis. My grandmother , her son - my father and one of my sisters , all have /had RA .. thus I assumed I had it as well . I definitely had many of the symptoms. I kept busy with work , family volunteer work , which kept me from experiencing the tin-man effect . Motion is lotion as one Dr told me. Since I had not received a confirmed diagnosis .. I figured I would manage my symptoms on my own with diet , exercise and practicing gratefulness. These last two years 2020/2021 it felt as if all my symptoms kicked into full gear . I found a new RA specialist who ran several blood tests and confirmed a diagnosis of Primary Sjogrens and Secondary RA. I've never been a fan of medication , but at this point , I needed something . I asked if we could start with the least invasive medication and go from there . I was placed on 3 months of Plaquenil , which I will complete end of November. I've been reading a lot about Sjogrens and it's helping me connect the dots. I have experienced dry eyes , mouth for several years now . I just figured I couldn't wear contacts because I was born with drys eyes . I have Systane eyedrop bottles around the house . I also thought my dry mouth was due to sleeping with my mouth open and sinus issues . Five years ago I was diagnosed with Esophageal dysmotility nutcracker esophagus. The Gastrologists couldn't tell me why I was experiencing these painful episodes. The first time I thought I was suffering a heart attack . Anyhow ... there is comfort in finding others who are going through life with these autoimmune disorders and working to manage them and live a purposeful life. I have hope for the future for all of us .

My daughter and I both have been diagnosed this year, we joined others in our family! I am learning about the disease I have had most of my life, and I am 71!

In the illustration I saw 15 differences.

Hi I have a leaky bladder. I had lost some weight & it seemed to be less of a problem. Now I’m sorta stuck in lazy mode. I think fried food might trigger issues? I have awful sinus issues if I eat not healthy I think. I have to religiously flush out the sinuses with saline mixture I buy at Costco. Dr Neil something? Oh yeah memory issues too! Don’t want to do much as house work goes, sometimes I do feel better about it though. I found out I think oatmeal or plain Cheerios is a good diet for my health. I have to take probiotics also. I eat black and brown rice with ancient grains or quinoa also. Can add canned chicken for mor flavor. I love blueberries and strawberries with cereal and oatmeal, love banaanas and apples. Helps loose weight with constant moving body by exercising while lying in bed. Do bicycle riding movements and tightening butt exercises. Twirling ankles and stretching big toes to help keep balance. And gotta walk proper to keep back pain away! Learned that in physical therapy. Oh well hope I gave someone helpful hints to fell better. And avoid fried plaintain. I think that what bothered me this last episode of not feeling well ie congested sinuses!! Take care

Oh how I love your humor.I love reading all, including he responses. I have had so many days when 20 hours of sleep isn't enough. My list of (problems) is so long that I don't pay attention except to say OH that's (reynards ) why my fingers are aching and white.How the heck do you spell it????? Let alone write it. I'm encouraged to see all of the responses and I thought I was in this thing alone. God bless you all, we need it. Keep writing, laughing, encouraging, and keep on keeping on. LMJ

Hello! I tried to post my story but I don’t know what happened. Anyway I’m new here and I’m honestly having the rash symptoms and dry mouth really bad today. I’m wondering what others rash looks like? I live by the beach and am so embarrassed I end up isolating myself.