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Sue's Story

     I was working as a mammography technologist and actively involved in the medical field for over 30 years.  I started noticing my inability to quench my thirst, dry food would stick in my throat, and I was feeling lots of aches and pains.  I wondered if I had diabetes since thirst is a symptom but my blood sugar was always normal at my yearly physicals.  I would go for massages, chiropractic adjustments and keep on pushing through the day.

     One day, out of the clear blue, a client at the mammography center wanted people to know about Sjogren's Syndrome and she was distributing info sheets to anyone who would take it.  My co-worker brought the flyer over to me and when I read the symptoms I was sure this could be my health problem.

     I made an appointment with my internist and he ran blood work to check my thyroid and ANA.  I was 44 years old at the time and I was diagnosed with hypothyroid and Sjogren's.  After having a barium swallow they also saw that my esophagus works slower than normal so I eat much slower than everyone else.  I saw a GI specialist for the chronic indigestion and chest pain, so now I take daily Prilosec.  Prilosec works wonders!  My left parotid gland has spasms and hurts at times, but luckily it will subside when I gently massage it.

     I didn't have much to complain about the first few years since chewing gum and Biotene products worked fairly well when I needed relief from the dryness and the burning.  However, the last two years have gotten much more challenging.  I started having random anxiety attacks, I felt like I was highly agitated and unable to tolerate being in my own skin.  There are days when I can't think straight and have difficulty expressing my thoughts.  Depression and fatigue became the norm.

     The rheumatologist prescribed Lexapro and this has helped tremendously with the agitation and anxiety.  I told him about my thinking difficulty and he ordered an MRI of the brain.  This revealed small white matter lesions of unknown origin so I had to be worked up for possible MS.  After a complicated spinal tap they decided I did not have MS or vasculitis so there's been no explanation for the brain lesions.  I will have a repeat MRI in August to check for changes.

     This past December I had a very painful herniated disc in my lower back that was pressing on nerves.  I finally found a wonderful chiropractor who practices the Cox distraction method.  It took the pressure off of the nerves in a matter of a few treatments.  It was incredible.  I continue to see her for maintenance so my lower back stays flexible and pain free.

     The last physical episode that I had to solve for myself was a recurring monthly vaginal inflammation that sometimes appears as a yeast infection but the usual yeast remedies wouldn't fix it.  I started taking a large daily dose of acidolphilis every day and I found an internal lubricant called Replens on the web.  I use the homeopathic yeast remedy from the health food store if needed because it won't burn like Monistat does.  This problem lasted for almost a year but it's finally calmed down.  I started taking fish oil capsules, flaxseed oil, and evening primrose oil along with garlic tablets and extra vitamin C.  No one told me to do this but I felt so inflamed that I started reading about what calms down inflammation in the body.  I also eat avocado for its ability to make the body more alkaline and less acidic.   I bought orthotics to help my painful feet and legs.

     So just like all of you, I am figuring out what works as I go along.  I've slowed down my pace and I try to take good care of myself.  I am concerned about how I will be able to continue working and supporting myself financially as time goes on.  I recently applied for disability and got declined.  I was warned that this would probably happen and that it is normal to have to make an appeal.  I have a loving family and a few good friends that let me lean on them from time to time so I feel good about the solutions I've figured out and so far its been manageable.  Its been very helpful reading Lynne's website and reading about all the different ways this condition appears in individuals. Thanks for the information and I hope I help others as well.

Best wishes, Sue

     

 

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The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the  supervision of a physician.