Hi,
I guess I'm a newbie. I received my Sjogren's diagnosis a week ago. I've had symptoms for several years, I just didn't know what they were a symptom of. My rheumatologist sent me a letter with the diagnose, a copy of the lab report, and a prescription for Plaquenil. He also said to make a follow up appointment for one month.
I feel a little lost. I've been reading articles and was happy to find this site. I have a lot of questions and I guess I'll write them all down for the follow up visit, but the burning question for me is what now?
Would anyone be willing to share how they coped the first few weeks, how did your life change, was it very gradual or did you see an immediate impact to your life and activities?
Thanks
im a newbie too so I am just gonna say HI for now :)
Hi Autumn.
That's kind of a rotten way to find out. Seems like she would have counseled you a bit. Keep expecting what you've been feeling for the most part. Sjogren's can get worse, and it can stay the same. Read through this site and you will find a lot of answers to your questions. There's a post from Miss Jinx...a day or so ago. I had put in a brief description of sjogren's.
Honestly, I was adjusting my life before I go diagnosed. I was sinking in my condition and wasn't able to keep up anymore - an not keeping up was not an option. So I drastically changed my life...wish I could remember where I posted that, but it escapes me now (hasn't been a good day for me).
When I finally was diagnosed - my head was a flurry of activity; confusion, scared, lost...pretty much the same thing you're feeling now. Sorry about that. I got a hold of all the information I could find, I purchased books, I researched the internet, I came here :).
It's an autoimmune disease - with those types of diseases onset of symptoms is a flip of a coin. Sometimes it won't even wait until you wake up in the morning to tell you it wants to bug you today. Somedays are beautiful. You learn over time to really enjoy life on the good days. You also learn to treat yourself right on all days - which is a blessing I suppose.
Reap the rewards of being in the right place here - because you are. Peruse... a LOT, you will learn a LOT. You will also find that your heart will become entangled with these beautiful people here, which is another blessing you can add to your jar.
I will tell you this, you are not this disease. You are still you. This disease is just living in your body - nothing else. So don't rate yourself based on what you can do or can't do - it has nothing to do with you, it's just a disease.
Welcome to the troops. Take care,
iRaisin
Hi Autumn :)
Welcome to Sjogren's world. Sjogren's is a very individual condition. It hits some people really hard and other people manage to get along pretty well despite it.
It does not follow a pattern. It is unpredictable. It makes some people very ill. There are others - like me - for whom it is an uncomfortable condition rather than an illness. I had it undiagnosed for years and brought up four kids. I was eventually dxd in 2004. I am now 60 and am still working - albeit part time. I learnt to pace myself. I learnt to prioritise what actually needed to be done and what was 'cosmetic' and unneccessary.
It takes a while to come to terms with the diagnoses. When we go to a doctor we go, expecting them to make us better - and sometimes they just can't. There is however - life after Sjogren's! Hopefully Plaquenil will help alleviate symptoms. Wean onto it slowly though. Work up to the full dosage slowly and always take them with food.
I hope you find the site useful.
Take care - Scottie :)
Thank you for the welcome and words of support. I can tell there are many good people sharing on this site. I guess in a way I'm glad to put a name to all the oddball things that were/are happening to me, that I never thought were connected.
I'm optimistic and I have a great family that supports me. I was thinking it has taken nearly five years for this diagnosis to come to light. Perhaps I will be fortunate enough to continue on much as I have been. If not, one day at a time seems like a good plan. :)
Hello Autum and Artistangie,
Autum...happy to hear your Dr. is going to see you in a Month...my second visit was a longer wait than that.
While you are waiting remember to breathe, as you read this forum or any other, information on the net (from a .org site.) try not to project that what you read it necessarily in your future. Each person is unique in their experience with this syndrome, how they may respond to medications, what their triggers are, and any combination of the above... ;)
Some people only have dry eyes and mouth and nothing more? Some do not have dry eyes, have dry mouth and other problems...so many combinations....who can predict. Your Dr. will monitor you with exams, blood work and what you report.
You have a diagnosis...empower yourself by making changes YOU can do. Good sleep schedule, a healthy anti-inflammatory diet (eat of good breakfast), exercise/walking, Dental appt, eye exam as well, be kind to yourself.
I keep a short journal of symptoms (because it becomes a blur, and frustrating , and I even find it tedious ), and the activity I was doing at the time ... to learn triggers, etc. Also if a med is added...I can see if a symptom is new after the med has been added and might be a side effect of the med, dose needs adjustment or it does not work for me.
I keep all of my labs in a red folder so I can find them quickly. Try to make a habit of getting a copy of labs at the end of visits so you have your own personal copy. That way if you see another Dr. you do not have to hunt them down. Give a copy to you GP. Maybe the GP can order blood work to ck your Vit/mineral levels.
Since you will be getting everything in order might as well pick up any other health pieces you may have dropped: pap smear, mammography...just so you can check them off your list. Not sjogren related...may have been put off when you don't feel well.
Autum and Artistangie..we are here for you.
You have both been given a lot of very good advice and information by the others here. It is so true that this is an individual syndrome and we just never know how it will affect us day to day or in the future...so its best not to waste time worrying about it! I know, I know...that is a lot easier said than done! :)
I want to welcome you to Sjogrens World and hope you find all of the information, support and friendship here that so many of us have found. It's a great place to feel accepted and understood!
Quietdynamics that's good advice about keeping a folder with lab reports. I have made an appointment with my GP. I felt it important to keep him in the circle of my care.
I have been reading from many websites and I can see this is a very individual condition. My best wishes go out to those who are suffering from more severe symptoms. I'm fortunate right now that I'm only dealing with dry eyes, mouth, skin rashes and occasional muscle spasms.
Hope everyone has a good week this week.
Appts:
Opthamologist: examine eyes and establish baseline @ beginning of use of Plaquinel (which can affect vision/side effect; not everyone, you will have eyes checked once a year on this med)
Dental: examine for carries at or under gum-line, enamel lose, address issues if/as they arise,rather than when they become major issues. Rule of thumb is dental exam every 6 months. If not covered by ins. you can see if it is covered as your condition is affecting your mouth/saliva--->medical condition.
Vit blood work a large number of people with autoimmune conditions are low in D3 and some of the B's. So the test will help you establish you individual baseline. Correct any deficit and may for example help with the muscle spasm (instead of a med)
Anti-inflammatory diet excludes sugars (good for teeth, rinse with water after eating anyway). I simply do not eat anything that is white. Bread, rice...fill up on veg, salads.
Plaquinel...any med you take you can look up online "physician Desk Reference" You will need to start using sunscreen, as it can usually cause photo sensitivity. Get a sassy sun hat.
Basically, a change in lifestyle habits at this point.
Welcome Autumn and Artistangie,
I agree with others on their comments. I was so so glad when I left with a diagnosis at the end of my first appointment with my rhuematologist.
It was helpful to know why I had been feeling like I had for years at that point, though it had become much worse by the time I went for this visit.
Then I wanted to look up everything I could to try to understand what was going on.
I take the day to day attitude now, and I am so thankful for each day, and appreciate the simpler things now. I now know it's what I use to think were the small things are now to me the best things in my life.
Take Care/God Bless :)
susanep