It's Like my veins??

Good morning!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.

Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.

It's like LIGHTNING struck my insides...


I also write fiction books and research at least one thing for each of my writings. I want to be as accurate as possible when talking about history, illnesses, dates, geographic areas....etc, but, you get my drift. In one of my recent books, I had characters who were struck by lightning. In order to get an accurate appraisal of the medical symptoms, longer term problems, or delayed symptoms, I turned to the internet. 

Lightning is primarily an injury to the central nervous system, often with brain and nerve damage. Including muscle soreness, headaches, nausea, mild confusion, memory slowness, mental fog, and dizziness or balance problems.


How interesting that the majority of the issues occurring with me involve my nervous system. It seems that I was struck by lightning and didn't know it...NAH.

It did get me thinking about why this would happen . What is going on within my body that's causing my nerves to misfire? I had horrible neuropathy all over my body. At times it felt like pin pricks everywhere. My lips and tongue would also go numb. I would occasionally lose feeling in my shins and forearms as well. At one point, I thought I was having a stroke and my doctor even instructed me to go to the emergency room.
(Thankfully, I was not having a stroke.) 

The longer term problems are even more ironically similar:
Problems processing new information
Difficulty accessing old information
Slower reaction time
Irritable and possible personality changes
Inattentiveness or forgetfulness
Headaches such as migraines 
Chronic pain from nerve injury
Difficulty sleeping - either sleeping excessively or insomnia

I suffer from each item on the longer term problem list. This list further proved to me that maybe studies could combine persons with chronic nerve injuries for treatment possibilities. I'm not sure if this is already occurring, but, it might be a good start. I know I currently take 3 different meds to make life bearable, but, it would be great not to rely on such drugs. 

Progressing further in research, I discovered the delayed symptom list:
Personality changes/isolation
Irritability and embarrassment at not remembering people, job responsibilities, and key information
Difficulty carrying on conversation
Chronic pain ad headaches


I can no longer multi-task and I still grieve over it. I used to be the go-to girl. I could juggle several projects at once and it was a piece of cake. Now, I can't even load a dishwasher and keep up with a conversation! no joke
I've experienced depression, anxiety, and anger at the limitations this auto-immune disease has forced upon my life. I'm not the same woman and it hurts, mentally. 

I have to take meticulous notes and my co-workers know I will need everything in writing. Sometimes I miss critical elements of a project, and I've asked my team leader to review all my work. 

It's debilitating and it worse than sucks.

Maybe I can make it more interesting and say I was struck by lightning. 

It's worth a shot.


Anonymous said…
A friend of mine got a very similar merry-go-round and had the Sjogren's diagnosis by one doctor, refuted by two others, now confirmed by a fourth. She's getting better on her own, though, with not much help but a lot of confusion from the medical community. Me? I had a 55lb weight loss last year that my gp brushed off (I did need to lose it) but my internist took seriously and it turned out to be a very large tumour on my thyroid! When they removed it in February this year, they found the other side of the thyroid was full of Hashimoto's...and on the new thyroid meds I've regained 34 lbs, which I HATE!

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