Personal

My experience with Sjogren’s

Dry Mouth Sjogren Syndrome – Chronic Irritation

Sjogren’s Syndrome has a variety of symptoms.  At first, they seemed minor to me.  But, the combined affect was profound. Dry mouth sjogren syndrome affected my work.  It disrupted my social life. It eroded my confidence.

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Dry Mouth

picture of early dry mouth provided by mollysfund.org

Dry mouth is a common problem. Many things can cause dry mouth.

Excessive use of alcohol

Medication Side Affects

Excessive Exercise

Medical Treatments

Medical Conditions

Food Allergies

The Environment

Weather

The condition can be frequent but temporary.  For me, it was chronic.  I tried treating my dry mouth with a drink.  I used gum to stimulate saliva. Chronic dry mouth is quite different.  I needed to apply moisture continuously.

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Journey Continued- Medical Appointments

Lots of Medical Appointments

Once I received a diagnosis, I needed a treatment plan.  This began a long series of medical appointments.  My journey continued.Persistence is key to dealing with Sjogren’s Syndrome.  Treatment is different for each person.  This means lots of appointments. As symptoms change, treatment changes.  Dry mouth may improve or get worse.  So treatment changes.

Be Organized

Your doctor (s) will have test results.  Specialists will record information based on interviews and observations.  You are the only source of information about your health, yours symptoms and treatment effectiveness.

  • Log treatment applications.Keep a journal of the journey.
  • Note medication side affects.
  • Note changes in symptoms.
  • Make notes on appointments.
  • Keep a calendar for appointments and health events.
  • Maintain a contact list of all doctors.
  • Keep a Sjogren’s journal.
  • Keep a list of your questions.

 Ask Questions

Doctors ask questions during appointments.  They also offer explanations for symptoms, choice of medication and ordering of tests.  You should understand all that information.  If you don’t understand something, ask.  Ask the questions on your list during each appointment.

There is nothing wrong with saying, “I don’t understand. Please explain what you just said?” It can be helpful to have a spouse, relative or friend attend appointments with you.  Both of you will hear the same thing from the doctor.  Often, you will have two different interpretations.

 My Journey Continues

My journey continues with appointments.  I see my family, my optomologist and dentist regularly.   I have seen a hemotalogist and a GI specialist.  Appointments can be difficult to juggle.  They are all important.

If it seems that you have a lot of symptom related appointments, its because you do.

  •  Be sure to attend each appointment.
  • Prepare  for  each appointment.
  • Understand what doctors tell you.
  • Report how you are feeling honestly and accurately.
  • Follow all the doctors’ recommendations.

I realize that my journey continues.  There is no cure for Sjogren’s Syndrome.  Your doctors will work to treat your symptoms.  Treatment will make things easier.  The goal is for limit the affect of Sjogren’s in you life.

Share your thoughts in the comment section below.  Are your symptoms controlled?  Do you have lots of medical appointments?

This site offers non-medical opinions about life with Sjogren’s Syndrome.  Images are clickable links to more information or other websites.  This site is affiliated with Amazon.com and other companies and may receive a commission if items are purchased through this site.  DiagnosisSjogren’s.com accepts no payments.  Each  company is responsible for their shipping and quality control of their products.  

 

 

 

 

 

Journey Beginning – Reviewing Symptoms

The journey beginning with identifying symptoms of  Sjogren’s Disease has been long.

My Journey Beginning with Symptoms

My Symptoms

My symptoms didn’t seem connected at first.  Sjogren’s is not that well known.  There are so many symptoms,    It’s not the first diagnosis thought of.  My blood tests showed an elevated white cell count.  I experienced tears in both corneas.  I had severe dry mouth. I couldn’t talk without frequent sips of water.   I had pain in my face and overwhelming fatigue.  I also began to loose hair.  At first, these symptoms seemed unrelated.

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