Staying Strong After Receiving Another Diagnosis
What’s up, warriors? I just cleaned out my purse and found 11 pens and a new lipstick I forgot I had. At least the TV remote wasn’t in there this time.
OK, I’ll stop procrastinating and get right to it.
I have some bad news. The other day, I was diagnosed with my fourth disease.
It appears I have Sjögren’s syndrome, Raynaud’s phenomenon, autoimmune autonomic ganglionopathy, and now scleroderma.
I’m feeling a little anxious and down this week, but I’m trying my best to stay strong.
Story time: It glows and pulls
My Raynaud’s phenomenon originally appeared a year ago. An antinuclear antibody test was positive, so my rheumatologist ordered additional bloodwork and other tests. Then, I was told I have Sjögren’s and primary Raynaud’s. Besides the sores from the Raynaud’s, I didn’t have any other skin issues or indications of scleroderma.
In May, I noticed the backs of my hands were shiny. I believed it was caused by the Solu-Medrol (methylprednisolone) infusions I’d had a month earlier, because I’d heard that steroids can cause skin issues.
Soon after, the skin on my left shoulder became tight and shiny with some discolored patches. This also happened to my forearms and legs. I had a follow-up appointment with my rheumatologist coming up, and I was curious what he’d say.
Diagnosis and an unexpected compliment
Just before my appointment, more symptoms suddenly came on, including heartburn and increased skin shininess and tightness that limited movement. A good-sized dent in the right side of my chest developed overnight as well, and I admit I was a little freaked out. Where did my tissue go?
When I saw my doctor, he told me right away I had scleroderma. He apologized and said he had been watching me for this disease. It seemed like he felt bad and didn’t want to give me the news.
By the way, someone said to me the other day, “My, what nice, shiny skin you have.”
I replied, “Thanks, it’s my scleroderma.”
“Devastated Traveler.” (Courtesy of Derrian Childress)
Next steps and a complication
The plan is to get a skin biopsy and begin intravenous immunoglobulin treatment. I’ve already started my immunosuppressive drug. It’s such an ordeal when I take a new medication because I get even more dried out than I already am and something strange always happens.
After only a few doses, my tongue became a little swollen, and last night, I experienced a type of dissociation where I got stuck in a teenage memory for about five minutes. It was vivid. I felt like I had gone back in time, but I was me at my current age. The medication bottle should have stated, “Warning: may cause spontaneous time travel.”
The takeaway and a farewell
We know Sjögren’s can either be primary, when it develops on its own, or secondary, when it develops in those with another autoimmune disease. It’s always a good idea to take note of any changes in yourself or your condition and share them with your doctor — no matter how small or insignificant the changes may seem.
It’s hard to remain strong after a new diagnosis.
I don’t know what to expect on this journey, but I do know that I refuse to allow illness to rob me of my peace or rule my life. I know many of you feel the same. We have a great group here. May we continue to help and support one another.
Till next time.
***
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.
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Comments
Terri Carter
I'm so sorry to hear about your new diagnosis. My thoughts and prayers go out to you!!
Rena Newman
Thank you, Terri. I appreciate your thoughts and prayers <3
Nancy Susan Guiselman
I admire your posture around not letting anything, including a body that you barely recognize, stand in place of you peace, joy and the knowledge that you are here for a purpose. Blessings: Susan 🦋
Alice scuderi
Yes u are strong for all of us when I get scared u lift me up after reading about your journey may god bless u are in my prayers
Rena Newman
Thank you Nancy and Alice. Blessings to you
Angela Terry Bryan
I was so sorry to hear about your diagnosis. Very glad to hear that you will not allow it to rob you of your peace or rule you life. I have Sjogrens, Sarcoid and fibromyalgia. Just found our I have heart failure as well. I find that prayer really helps me. May God bless you and keep you you in Peace. Angie
Rena Newman
Angie, I'm sorry about your conditions too. Yes, I agree about prayer. Blessings and peace to you <3
Patricia Hood
Stay strong you are an example for all of us with your strength,
Rena Newman
Thank you for your comment, Patricia
Katrina v Mabon
So sorry to hear about your latest development! I am bothered by the extreme dryness and burning of my
Mouth. Need to eat foods that are mild. Was extra dry so was given a preparation that had somewhat disastrous results. My nose was running and I constantly had to go to the John and the worst part was it didn’t relieve the mouth dryness!
Rena Newman
Hello, Katrina. Thank you for your comment. I also can't stand being dry. The nose running while still having mouth dryness sounds so uncomfortable.
Alice scuderi
Praying for u and your strength that keeps u going u help us all with your uplifting stories bless uc
Rena Newman
Thank you, Alice <3
Ellen McPherson
I am so sorry to hear of your latest diagnosis. My thoughts and prayers are with you. My thanks, too, for all that you have shared because you have helped me so much in understanding what these diseases are doing and how to cope with them. I thank you and other readers, also, for sharing your stories. It's comforting to know that I am not alone - that others are undergoing the same discomforts, questions and fears that I am facing. As Tiny Tim said in "A Christmas Carol", May God bless us everyone!
Rena Newman
Ellen, you made me cry. I'm glad these posts have been helpful to you <3
Ann Timberlake
I, too, have many. Started with Raynaud’s close to 20 yrs ago but I had no idea what it was and just assumed my fingers had been frost bitten while cross-country skiiing when I lived in WI. Then in 2014, I was diagnosed with ILD. Two years ago I was diagnosed with gastroparesis and with the third component was diagnosed with Systemic Sclerosis, which is a subset of Scleroderma and most of the damage is internal, the lungs, digestive tract, heart and kidneys. I have suspected Sjogrens for some time but now my rheumatologist has said I have it; he finally saw nail-bed changes. I am retired and concentrate on other people rather than what I can’t do. I sew for all the babies at my church, do alterations for anyone at my church and many other sewing and embroidery projects and drive people who can no longer drive. My father always told me that the best way to be happy on this earth is to do something nice for at least one other person every day.
Rena Newman
Ann, I'm sorry about your conditions. I too have the Systemic Sclerosis. I think it's great that you're using your sewing skills to help others. Blessings to you.
Carol Rivers
I admire your strength. I have Hashi, and getting worked up now for Sjogren's, possibly autoimmune biliary cholangitis. I am certainly feeling overwhelmed. I hope when I find out the definitive news I can view it in like terms as you.
Rena Newman
Carol, thank you for your comment. Sorry about your conditions. Blessings to you.
Bev
The beginning of a new diagnosis is always hard. I remember my last one, lichen sclerosis. I was not a happy camper. It is in remission and I have calmed down. We don't die from these things, it just makes life more challenging. I have noticed my skin being shiny too and wondered about it. I agree with you, "refuse to allow illness to rob me of my peace or rule my life."
Rena Newman
Hey, Bev. Thanks for your comment. Glad to hear your ls is in remission.
Marcie
Sorry to hear about your new diagnosis. Love your humor, it’s the best medicine.
Rena Newman
Marcie, thank you for your comment.
Felicita Alvarado
Prayers for you to stay strong in the fight. As always thank you for sharing.
Rena Newman
Felicita, thank you. I appreciate your prayers <3
Kathryn Hagen
I'm so sorry to hear about your new diagnosis. It sounds as if your doctor was alert to the possibility and I hope that means he's had time to think about the very best treatment for you.
Sheryl Aronson
Hi Rena - I am so sorry you are getting a laundry list of autoimmune crap. Unfortunately, that's how it tends to go. Once you get one, it likes to invite friends. Like the old Lay's potato chip commercial- "bet you can't eat just one". Bet you can't have just one autoimmune disease. Just a few corrections for you: They are now trying to get away from using the primary and secondary designations with Sjogren's, instead saying Sjogren's in association be with Scleroderma, etc. Sjogren's is a disease of it's own, not secondary to anything. Also, I can't say for your other diseases, but Sjogren's is not rare. It is estimated to be the second most prevalent rheumatic disease, behind only Rheumatoid Arthritis, or possibly as prevalent as RA.
Kathy Jorgensen
I recently just been diagnosed with sjorgens and found your blog. I just got teary eyed reading it. I appreciate your positive outlook and I need to take note of that but I am scared for me and my future. I see my rheumatologist tomorrow and I have so many questions. Thank you
Rena Newman
Kathy, thank you for your comment. I get scared too. It really helps to cry it out, keep a sense of humor, pray and have support. <3
Holly Hackett
Sorry to hear about another new addition to your health issues. I am only into this Sjogrens for a year now and scared to death about how worse this is going to get. You have a fantastic sense of humor and I love reading your diary.
Rena Newman
Holly, thank you. I'm glad you're enjoying my diary. Blessings and peace to you.
Laurie Nichols
Oh, sweet Rena, I am feeling sad for you, it’s hard to keep having setbacks. At least you are getting treatment for it immediately so hopefully you can keep it under control.
I have had calf soreness for a month and during that time I’ve been experiencing leg cramps, all in the same location, ouch! Today my rheumatologist sent me for an MRI to see if I had muscle tearing which can be caused by leg cramps. Who wouldda thunk? I have Sjogrens Syndrome. I am now logging my water intake to make sure I get plenty to keep those cramps away (but it could be they are caused by something else!).
Recently discovered a good resource by an MD who also suffers from Sjogren’s, her name is Dr. Schafer and her site is www.schogrensadvocate.com and it has a lot of good information.
Also signed up for a Mayo Clinic forum https://connect.mayoclinic.org all kinds of topics are available to comment on. You can respond and ask questions anonymously. They have volunteers who also chime in and do fact checking.
It does help to have like-minded (and bodied) people with whom to connect.
Best to you as you continue to seek relief and live your best life.
I’m headed to visit my grandkids after being separated for 18 months! Because of my possible muscle strain/tear, my husband arranged for me to have a wheelchair ride through three airports!, a first for me, but probably not my last.
Too bad the Airbnb we rented is up a stairway. I would appreciate it if you could all send positive vibes through the atmosphere to help ensure that my legs get me up and down.
Laurie Nichols
Sorry, I need to make a correction. The Website I referred you to is sjogrensadvocate.com tough word to spell!
Bonnie Klyce
I read your post on Rena Newman's post. I have had terrible muscle cramps in my calf's und feet. I was told by a former football player to drink pickle juice everyday. I no longer drink it everyday, but I do eat a pickle everyday. I tried this and it works. Please give it a try. This might help you. Hope you get better soon.
Rena Newman
Laurie, I'm also having calf soreness and trying to keep track of my water intake. Thanks for sharing those sites. Glad to hear you're going to see your grandkids. I'm believing with you that you will get up and down as you need to. <3
Marilyn Hallett-O'Neill
Hi Rena, I find your positivity so uplifting. You are an amazing lady. I am sorry to hear that you have now been diagnosed with Raynaud which seems to go with Scleroderma ( my husband had both.)
I was diagnosed with Sjogrens in 2006, 12 months after having breast cancer. 2yrs ago I found I had lung cysts. So the story goes on as does the list of specialists for the different problems that arise. I like you won't let these things stop me enjoying my life Thank you for sending out and sharing the information that you do.
Thinking of you. Stay strong
Rena Newman
Marilyn, thank you for your comment. I appreciate your kind words. Thinking of you as well. You are strong and inspiring.
Sharon lewis
Rena.
I am sorry for your difficulties. Have you ever gone to see a Functional Medicine Doctor??
Sylvia Howard (Mrs)
My biggest problem with Sjogrens is my eyes followed by dry mouth and skin.
Terry Logozzo
It's bittersweet that we have a group that understands what everyday means - thank you so much for sharing, but I'm so sad that you have this to share...
All thoughts and prayers go to you and everyone. Keep going forward!!!!
Helen Hussar
Just diagnosed with Sjogrens at 96 - Had my appt with Drs. assistant (Dr. is ill) and she said there was nothing one could do for it -- so anxious to know what is in store for me -- is there an association that informs you of the latest findings or newest meds that I can contact. She did not even tell me what to do about dry eyes and mouth and supposedly the office is rated highly.
Thank you all for your informative comments.
Loretta Reilly
Hi Rena, you are amazing. I’m sorry to hear about another diagnosis for you. We all seem to keep on collecting these diseases. I’m truly impressed with your sense of humor, laughing about it is all we can do and you do it well.
Kelly Smallwood
Oh, girl, I understand! I just had the hives, and they took blood to check all the ANA. The numbers came back positive for scleroderma, but they looked at my skin and decided that I did not have it because you must have the tight skin as well as the positive ANA. Instead they diagnosed me with some vasculitis thing, which is an auto immune disease with your skin. Argh! It’s #7 autoimmune 😩
Bobbie Puckett
Does anyone have trouble with lower lip swelling and cracked open and bleeding? Took medicine for fever blister but did not help . Had this about a month.