Achieving Goals While Being Chronically Ill

Rena Newman avatar

by Rena Newman |

Share this article:

Share article via email
Banner for

Hello, friends.

Phowhoo, snap.

Apparently, I have a new habit of chewing gum obnoxiously and blowing bubbles like I’m in junior high school in the 1980s. I don’t know how I stand it because I can get amusingly agitated if I hear others chewing — or breathing — but not to the level of having misophonia.

It’s been a while and I’ve missed you all. I have an update and then I’ll share my most recent realizations about working on goals while being chronically ill.

Recommended Reading
siglec-5

Making the Most of Your Doctor’s Visit When You Have Sjogren’s Syndrome

I’m back in school and taking American Sign Language this semester. I seem to be picking it up quickly, although the phalanges of my handsies don’t always want to move to form the proper handshapes, and it’s driving this perfectionist a little batty. I blame my scleroderma/systemic sclerosis and not my Sjögren’s syndrome for this issue.

Another thing is that it’s getting harder to put my socks on. The other day, I was so stiff I fought for about 10 minutes! What’s bothering me most, though, is my esophagus. (Heads up, mondegreen ahead.) It burns, baby burns, I need Crisco internally since food is sticking around inside my tube. Whoops, my gum just fell out of my mouth. Time to transition.

Sjogren's Syndrome News |

“Fabulous Foresight.” (Courtesy of Derrian Childress)

Prioritizing and staying focused

Illness takes up a lot more time than I realized, with doctor appointments, physical therapy, rest, emotional processing, and more. I’m thinking that when I want to have a good cry, I’ll need to schedule it. I only hope these raisin glands are able to produce tears during the appointment. Yes, it’s been quite eye-opening how crucial it is to learn how to better manage my time.

I’ve also been reevaluating the importance of certain things, and I’ve asked myself questions such as: What do I need to remove from my life? (No available minutes for drama and distractions.) Can I cut this out or cut back? Is there something I’ll need to sacrifice temporarily or permanently in order to thrive?

Productive and in pain

As many of you know, living with Sjögren’s or any other autoimmune disease is difficult. We have good days and bad days, and even good and bad moments.

I’m finding out that by pushing through and concentrating on attaining my personal goals, it’s distracting me from the suffering, which helps me view myself differently. I’m seeing less of my illness, which is still there, but has less power and identity. At the same time, I’m seeing more of my successes and feeling more confident about my future.

Although I may not be where I want to be, and I’m unable to do as much as I want to, it still feels good to be doing something and working toward an objective.

To the person who is unsure about taking the first step toward a goal you’ve had: Why not take it?

To someone who is looking for encouragement to keep going: You’ve got this.

Everyone, let’s live in the present, and keep pressing on, dreaming, and doing what we can. Let’s not allow illness to get in the way.

Quote of the day: “You can’t wait until life isn’t hard anymore before you decide to be happy.” — Jane Marczewski, aka Nightbirde

Positive affirmation of the day: I am achieving my goals.

P.S. Tea and talk continues. And just for fun, how many differences can you spot in the mirror reflection in the illustration above? Please comment below.

***

Note: Sjögren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sjögren’s Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sjögren’s syndrome.

Comments

Jean Winter avatar

Jean Winter

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

Reply
Rena Newman avatar

Rena Newman

Jean, thanks for commenting. Blessings to you

Reply
Susan Brock avatar

Susan Brock

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.

Reply
Rena Newman avatar

Rena Newman

Thank you, Susan. You are amazing <3

Reply
Ann Timberlake avatar

Ann Timberlake

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.

Reply
Rena Newman avatar

Rena Newman

Ann, thank you for sharing. I think it's awesome how you're driving others and sewing for those in need <3

Reply
Jeannine schryer avatar

Jeannine schryer

I saw at least 12 differences in those pictures

Reply
Rena Newman avatar

Rena Newman

Jeannine, thank you for commenting. More than 12, less than 20

Reply
Allison Pikiell avatar

Allison Pikiell

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

Reply
Rena Newman avatar

Rena Newman

Allison, yes! Thanks for commenting.

Reply
Eva avatar

Eva

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.

Reply
Rena Newman avatar

Rena Newman

Eva, thanks for sharing. I will look into it. I'm thinking I'll have to only eat breakfast and lunch as well.

Reply
Laurie Nichols avatar

Laurie Nichols

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.

Reply
Rena Newman avatar

Rena Newman

Hey, Laurie. Cool, you caught a good amount of the differences and details. That's Kukla's tail coming out from under the bed. She follows me around everywhere. Thanks for sharing. I also need a healthcare manager, ha

Reply
Nancy Blonshine avatar

Nancy Blonshine

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:)

Reply
Sandra Walker avatar

Sandra Walker

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?

Reply
Virginia Meagher avatar

Virginia Meagher

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.

Reply
Bobbi Warwood avatar

Bobbi Warwood

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 😅

Reply
Joan Wolfe avatar

Joan Wolfe

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.

Reply
Ann Rogers avatar

Ann Rogers

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,,,,

Reply
Debby Stephens avatar

Debby Stephens

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...

Reply
Siobain Duckworth avatar

Siobain Duckworth

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.

Reply
Judy in Arizona avatar

Judy in Arizona

Where did you move to for more humidity?

Reply
Jody Bracken avatar

Jody Bracken

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

Reply
Lucy LeVine avatar

Lucy LeVine

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 .

Reply
Pamela Reaves avatar

Pamela Reaves

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.

Reply
Diane ecker avatar

Diane ecker

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

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.