My 23 Year Sjogren's Syndrome Journey
Hello there,
I just wanted to share my Sjogren's Syndrome journey which began in 2001 as well as the many autoimmune system illnesses i've been diagnosed with, treatments and finally the eye tests I took for the Sjogren's Syndrome diagnosis.
I am sharing my story in the hopes of helping anyone who reads this that may have similar symptoms/illnesses to help find a real diagnosis in a more timely manner, not 23 years like me.
Sjogren's Syndrome is an autoimmune connective tissue disorder which affects multiple organs, including skin as these are held together and connected by lymph nodes, nerves, blood and fatty tissue.
I was just diagnosed with Sjogren's Syndrome by my Optometrist using a Schirmer Eye Test, which checks your tear ducts for dryness as well as other eye exams.
Back in 2001, my symptoms began with terrible lung infections, mostly bronchitis and pneumonia.
I would also get the flu.
In 2005, I tested for Alpha- 1 Antitrypsin Deficiency,
a disease caused by a defective gene as I had constant, chronic lung infections.
I didn't test positive for this, but later on I tested positive for Asthma and Mild COPD.
In May of 2001, I had a flash fever of 101 and my left forearm was severely cramped up with my middle finger curled inward towards the palm of my hand. The pain was so bad that I had to press down on my left forearm to release the finger and stop the pain.
It took a minute, but this actually worked.
I used to have a short commute from my job at the Central Islip, NY Post Office to the Federal Plaza Post Office which was under 10 minutes.
I had just left the first half of my shift at the Central Islip Post Office to go to my next one at the Federal Plaza Post Office and as I was going down the road, I heard an alarmingly loud screech in my ears then all of a sudden I had tunnel vision in both my eyes. It looked like a dark tunnel with a tiny bright spot.
Then everything went dark...
While I was driving...
I could feel my heart pounding in my chest and my ears.
All I could do at this point was calm myself down to figure out how to be & stay safe.
I told myself:
"Just tap the breaks, then come to a full stop"
"Put the car in park"
Then I told myself:
"Feel around for the flasher light and press it"
(So others can see I cannot move & go around me)
Finally, I told myself:
"Put your hands on the wheel and pray"
I did just that.
Even though I was temporarily blind, the loud screeching finally stopped and I was aware of my surroundings by sound and touch only.
I prayed to God for my vision to be restored, it took minutes but this sure seemed like an eternity.
Once again, the loud screech in my ears returned
as well as my vision. It looked like an old TV that had just been turned on, a small white dot that grew bigger to reveal the whole picture.
When my vision returned, I noticed there was no one around. The street I traveled on is usually busy, but not a soul was in sight when I came to.
This in itself, was a miracle.
God had indeed answered my prayers. I was safe and I could see and hear normally again.
Right after this incident, I went to see a Neurologist and Opthalmologist to check me for a stroke. As it turns out, I had experienced a TIA
also known as a Transient Ischemic Attack or Mini Stroke. TIA's can resolve from minutes to 24 hours.
At this time, my heart was still good. I had to wear a "heart harness" for 24 hours to make sure.
At this point, the only diagnosis I had was a mini stroke.
A few years later, around 2005 I was diagnosed with asthma and was prescribed an inhaler.
The lung infections still continued.
Fast forward to the 2010's...
2012:
Hypothyroid
(Under Active Thyroid)
At first, I took a synthetic thyroid med named
Levothyroxine which didn't really help me at all.
My friend Stacey had her thyroid removed and told me about her wellness journey and how Armour Thyroid, a natural dessicated pig gland medicine helped her feel and look better.
I took this and I felt much better, was able to do more and sleep better. My puffy face finally went down.
When someone is diagnosed with an under active thyroid, depression is also diagnosed and an anti-depressant is prescribed.
2013:
I developed a very red, bumpy rash on my shins & calves. They were very painful. My legs swelled, too.
The top photo shows my legs with these red bumps on my wedding day. The bottom photo shows an example of someone's legs with Sjogren's Syndrome.
The next issue that popped up was the Vitiligo/Raynaud's Syndrome on both my hands
Another manifestation of Sjogren's Syndrome is Psoriasis and Excema.
The skin on my feet, temples and scalp were constantly cracking, splitting and peeling from inverse psoriasis, which was very painful.
Topical medicines did not help. Recently, I tried a trial size version of Cetaphil Eczema Itch Relief from my dermatologist's office and amazingly enough, it is working. I will update with "After" photos once this has all cleared. Sjogren's really wreaks havoc on the skin.
October 2016:
I had been diagnosed with Pleurisy, an infection and inflammation of the lining around the lungs
(Connective tissue)
I almost died from this.
I couldn't eat or sleep properly for 2 months
The only thing that alleviated the burning pain from this was Ginger Root Tea with honey.
By the way, it was Ginger Root Tea that saved my life, too.
I also took a Z Pack a k.a. Azithromycin, an antibiotic, too.
I had posted my symptoms and diagnosis on Facebook and a friend noticed this post and commented that Pleurisy was very prevalent back in the 1800's and that it was treated with Ginger Root Tea and honey.
Sometimes it takes a village. I'm so grateful I wasn't afraid to post my diagnosis & symptoms as an angel in the form of a friend gave me the information I needed to save my life.
Every lung infection since has been cured faster with Ginger Root Tea & honey. I also take Azithromycin a.k.a. Z Pack though thankfully I have not had a lung infection in 2 years.
Sjogren's Syndrome causes severe dry mouth, throat and eyes.
My eyes would fluctuate between being extremely dry and gritty, like sand and sometimes sharp, like glass.
Sometimes, they would be red and extremely watery. I was told by my Optometrist that my eyes get watery to compensate for the dryness.
I was told to use Systane, a thicker, longer lasting eye drop. This worked well for the past two years until now, which queued me in on a possible diagnosis of Sjogren's Syndrome.
At first I thought it was Thyroid Eye Disease a.k.a. TED, since I have an under active thyroid. However, I also had severe dry mouth which is a symptom of Sjogren's Syndrome.
The next diagnosis was Gingivitis and Periodontal disease. Dry mouth causes an increase of bacteria in the gums, tongue and mouth and causes bad breath, too.
At it's worst, the Gingivitis caused a tremendous amount of bleeding.
I had deep "pockets" and receding gums
I also had to get my gums "scraped" so my teeth
wouldn't get damaged.
Biotene brand mouthwash, gum and spray helps with dry mouth.
Any gum with Xylitol works, too...
So does "Oil Pulling", an Ayurvedic way of cleaning teeth and gums by using a Tablespoon of either Coconut or Olive Oil and "swishing" it like a mouthwash.
2019:
Sleep Apnea
Fatty Liver Diagnosis
Type 2 Diabetes
High LDL Cholesterol
Severe eye bags
2020 & 2021
COVID & COVID Pneumonia
Oh yeah, I almost died from this, too.
I have several nodules in my lungs from COVID and now Sjogren's Syndrome, too
November 2022:
Neuro Cardic Syncope
I woke up, got out of bed, took a few steps and lost all sensation from the neck down and collapsed.
It was if all of my circulation got cut off. It took a few minutes for me to get my bearings. Then I went to the hospital.
A week prior to this, I lost sensation in half of my pointy finger. Another day that week, I lost sensation from my right knee down. Back in 2016, on Thanksgiving I had filled a pitcher with tea and as I was bringing it to the table, my left knee collapsed as I lost circulation from the knee down. Once again, I regained control in a few minutes just like I did back in 2001 when I had a TIA.
When I was in the hospital, I had Orthostatic blood pressure tests. ( Standing, sitting then lying down)
Fortunately, the lady in the next hospital bed (who became a great friend) told me to take a Tilt Table Test, where you get strapped onto on a table that tilts and you stand while someone gives you Nitroglycerine. During this test, my heart was racing, sweat was pouring off of me and all of the color in the room turned to gray. Then nausea, vomiting and incontinence. Oh, and then I passed out. I had indeed, failed this test. It was finally confirmed
I had Neurocardic Syncope.
At least I had confirmation why my circulation had got cut off from time to time.
This is also related to Sjogren's Syndrome.
Another clue that my circulation wasn't right was on my hands for years. I thought it was vitiligo but
it turns out all this time it has been Raynaud's Syndrome, also associated with Sjogren's Syndrome.
Raynaud's is a skin condition where the tips of the fingers turn white, sometimes red or blue as blood circulation is slowed down.
I was first prescribed Amlodipine for high blood pressure, but later put on Carvedilol as it is stronger.
I was supposed to get a stent put in my artery but was "only" 20 percent blocked.
Below is a link to the show I did with my new friend Deb Meehans, the lady in the hospital bed next to me who told me about the Tilt Table Test and quite possibly saved my life who also reminded me how important it is to be your own healthcare advocate.
Every autoimmune issue I've been diagnosed with is associated with Sjogren's Syndrome.
After 23 years of much suffering and a lot of researching, I cannot tell you how much it meant to me finally getting the Sjogren's Syndrome diagnosis, the common thread linking all of the autoimmune conditions I've been diagnosed with.
May 2024 Sjogren's Syndrome Diagnosis
I have a lymphoma in my upper neck, right side below the base of my skull.
I had just seen an Optometrist who was the first to confirm my Sjogren's Syndrome diagnosis. He gave me a series of eye tests, including a Schirmer test which measures dryness in the tear duct and showed the extreme dryness I had experienced.
I had an ultrasound of the neck and it showed what I was feeling for awhile, and it was confirmed with my new Ear, nose & throat doctor that this is yet another symptom of Sjogren's Syndrome.
I am so very thankful for all the doctors that have treated me, all my friends and family that have been there for me through the years, through all of diagnoses and prayed for me.
It worked! I am still alive and Kickin'.
I am looking very much forward to healing a lot of these symptoms despite Sjogren's Syndrome being an incurable disease.
I've done the research and a few things that are supposed to help are:
Omega 6 Oil (helps with inflammation)
Vitamin E Capsules (helps heal skin)
Xilitol Gum ( helps with mouth dryness)
iVIZIA Micellar Eyelid Cleanser
Systane eye drops
I will update this blog post with more photos and news of me hopefully healing.
In a few weeks I will be going to the Optometrist for injections in my side to help the immune system. It is non steroidal, which is great. Once I get the exact name of the injection I will update this blogpost.
Until then, take care.
I hope my wellness journey helps you in some way.
At first, I had some reservations about sharing my journey as well as the unflattering photos of myself but I've found that sharing all of this may just help someone out there in Cyberland from many years of suffering.
Much love,
"Rev. Sue"
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