Delightful Designs

Please forgive me.  This is very long and is meant to let others know about autoimmune disorders.  I need to write this down mainly for myself and I understand if you don’t read  all the way down, but I appreciate your doing so.

This is my personal view of Sjogren’s Syndrome who has had it for way too long.  When you think of Sjogren’s, people think that it is just dry eyes and dry mouth.  Wrong!  Sjogren is an AUTOIMMUNE disease just like diabetes, rheumatoid arthritis and Lupus.  There are millions of us out there who have S.S., some have Primary S.S. along with other disorders.  Here is a link to the Sjogren’s Foundation and it describes it in detail at: http://www.sjogrens.org/home/about-sjogrens/diagnosis.

Here is a definition:  Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.  There is no cure for it but there are treatments that help with some symptoms to slow down the progression.  That is why we call ourselves Moisture Seekers and why I drink so much water.

I am not complaining about my symptoms but trying to educate others about it.  I may look healthy on the outside, but inside I am fighting a battle against my own immune system.   I was diagnosed about 7-10 years ago with Sjogren, but probably have had it for a lot longer.  The problem with diagnosing S.S. is that the symptoms start off vaguely and the doctor will diagnosis you with a sore throat and treat it as a sore throat, as an example.  That happened way too often for me, because I never seemed to get better.  I was always sick with a cold or vague joint pains and my doctor told me to exercise and wrote it off as being overweight and I tried his remedies.  He treated it as nothing of significance and made me feel that I was crazy.  He would not take it seriously!   I finally confronted my doctor after a few years of this treatment, and demanded that I get a blood test and see a rheumatologist.  My primary told me that everything was okay, but the blood tests did not match the markings for Rheumatoid Arthritis, which he thought I had, even though I had none of those symptoms.  If the tests didn’t match the markings for Rheumatoid Arthritis, then why didn’t  he check it for something else?  So infuriating that he wasted my time because he was too lazy to double check!

I met my rheumatologist about a week later and he did a thorough exam, including blood tests.  I didn’t and do not have Rheumatoid but Primary Sjogren’s Syndrome.  At that time I had no idea about Sjogren’s Syndrome or what it was or how debilitating it can be.  I was just so happy to have a diagnosis and that I could move forward and fight this battle.   As  I had been undiagnosed and misdiagnosed for several years, the damage to my system was already under way.  There is a reason why patients with Sjogren’s are called the Moisture Seekers, it dries out your bodily tissues.  Mine had spread from just dry eyes and dry mouth to chronic respiratory problems, minor joint pain (for some people) and now mobility issues.  I have chronic fatigue, chronic pain, and brain fog.  This is not something that you bounce back from.  Once the damage is done, you cannot go back.  I have osteoarthritis but thankfully no joint pain in my hands, but I have it in my knees and feet.  Every day is a new adventure in what may happen to my body.

My autoimmune system is shot and I catch everything very easily.  Think about it, when a normal healthy person has a cold, they usually get over it in a few days.  With Sjogren’s, it can take anywhere from a week to a month to get over it.  I have no moisture or mucus production to protect my body, which is a front line defense against illness.  I have trouble breathing as it affects my lungs and I frequently get bronchitis.  I have problems with my sinuses and have frequent sinusitis.  Add to that, chronic fatigue.  When I get a cold, the fatigue is the worst and hard to come back from.  In addition to that, I have what is called dysautonomia.  That means I cannot regulate my own body temperature among other problems.  (http://www.dysautonomiainternational.org/page.php?ID=34).   I can start sweating like crazy in an air-conditioned room and not be doing anything.  I simply cannot control the heat my body produces.

I also have episodes where I will just crumple while doing something, like sewing.  Doug, who puts up with this and is such a dear, has to literally walk me from my room to the bedroom as I cannot move my feet on my own.  This happened while I was waiting in the exam room for my primary to come in.  I could hear everything that was going on but could only mumble unintelligibly.  To me, I thought I was speaking  clearly, but apparently not.  I have no idea or warning when these episodes are going to happen or where.  I don’t drive very far because of this as it is very scary, not just to me but other drivers.   I have to lie down right then and there!!

I have had to call a friend at times at the last minute and let them know that I cannot make it.  I have no control over this!

I also believe that I have IBS or some other gastric disorder because of this.  Who knows what else is next on the list?

Honestly, I am not complaining and I hate coming across as whiny, but if YOU or someone else have a lot of vague symptoms that don’t add up, or if your doctor just ignores it as just OLD AGE!  (Yes, my doctor told me that.  I’m only 60.), then find another doctor who will listen to you and INSIST that you get the proper treatment.  Too many others are out there with Sjogren’s Syndrome and don’t know that they have it.  Please get it checked out for your health and peace of mind.

Actually I have more good days than bad, but when the bad days  hit, they seem to last a little longer.  I am still active, although it be slow, I still sew and am teaching my granddaughter to quilt, and have a good network of friends and support.  I may not beat it, but I will give it a run for the money.  Not ready to give it up yet!!!

Please read this:  https://sjodry.wordpress.com/2013/04/30/an-open-letter-to-those-without-sjogrens-syndrome/  This is why I don’t say how I’m doing.

Thank you for reading this.