Share it

Tuesday, August 16, 2011

Still Learning How to Deal...

Since this is my first official blog, I'll start by explaining to you exactly what has been happening to me in the past 3 years.  Actually, I've been some sort of sick almost my whole life, I should mention, I'm 26 years old...The biggest, life changing symptoms started developing about 3-5 years ago.  I had the most random, harshest abdominal pains.  I attributed it to having a C-section with my youngest son, Aiden, however, little did I know, my body was wreaking massive internal havok.  I went through substantial testing to no avail, the only positive bloodwork coming back was my ESR (Sedementation Rate Testing - to see how fast blood platelets fall, determines the amount of inflammation - if any - in your  body). 

  • October 2008 - Geisinger Clinic, McElHatten, PA
Visit to the doctors for abdominal pain, and lumps forming in my left breast and on my chest wall.  Sent to Lock Haven Hospital for an ultrasound - The ultrasound revealed nothing, and I was treated like I was crazy.
  • January 2009 - Lock Haven Hospital, Lock Haven, PA. 
 After the positive ESR test, I ended up in the Emergency Room at Lock Haven Hospital with severe lower left abdominal pain.  A CT Scan with contrast was performed and it was determined that I had diverticulitis (at the age of 24!?!?!) and that my diet had to drastically change.  I was given antibiotics and sent home. 
  • February 2009 - Holy Spirit Hospital, Camp Hill, PA.
Back in the ER, for the same type of pain, only this time, it was bilateral.  Another CT scan with contrast was done.  The report stated no diverticulitis, but that I had cysts or "tumors" (and I use quotes because they literally used air quotes when explaining the findings to me) bilaterally on my ovaries.  This scared me because I had already tested positive for Severe Dysplasia on my cervix, and had surgery in 2004 to remove the infected, almost cancerous area. I had lost almost 70% of my cervix, leading to a high risk pregnancy with my son in 2006.  Back to the Er - They sent me home, told me to see the Women's Health Clinic. Two weeks later, I did.  They found nothing on the ultrasound.

After being told time and time again that something is found, and then going to get further help and evaluation and being told that there's nothing wrong, I began to feel hopeless...lost...confused, and downright let down by the medical profession.  I was exhausted and worn out and tired of trying, I thought I would just have to live with the pains - so that's what I did. I avoided the Dr's for months, until October 2009.
  • October 2009 - Carlisle Regional Med Center, Carlisle, PA
I presented to the ER in October 2009 with severe abdominal pain, bloating, fatigue, bilateral chest pain, front and back. CT scan with contrast revealed a bad gall bladder, along with nodules on my left lung. I was sent for a chest xray 3 days later which revealed no nodules, lumps, nothing...on either of my lungs. I met with a surgeon and had my gall bladder removed laparascopically. It took me two months to recover from a procedure that has a 2 week recovery period.  I experienced extreme dizziness, loss of vision, nausea, and the healing process for my four incisions took way longer than expected.  I returned to work mid December, 2009.
  • April 2010 - Holy Spirit Hospital, Camp Hill, PA
Here we go again...I was sitting at my desk at work - I was an appeal's representative for a Medicare Contractor (I still am, just on a temporary hiatus) - when all of a sudden, I developed this piercing headache, my eyes went blurry, then began to black out.  I lost all of my peripheral vision (they call it tunnel vision) and I developed excrutiating neck, face and head pains. I had a small rash on my right shoulder, like a dry patch of skin. One of my coworkers drove me to the hospital, where they treated me for a migraine and sent me home.  The next morning, I woke up to the right side of my face, completely swollen and drooping.  I didn't understand what was happening. I called my PCP who immediately got me in...She couldn't figure out what was wrong with me, so she prescribed me Prednisone and a referal to a Neurologist for the facial drooping, headaches, etc.

To make a horrendously long story a lot shorter, from April - September 2010, I was seen by 13 different specialists, diagnosed with Lyme Disease, told I was severely depressed (to which I replied "the only thing depressing me is the lack of knowledge with so many highly commended physicians"), diagnosed with Psuedo Tumor Cerebri (thanks to the Prednisone - we'll touch on that later), and also developed a wonderful sunlight/fluorescent lighting sensitivity, which made it very difficult for me to barely function, let alone enjoy anything.  To be honest, I felt like a freak...I was so completely exhausted and distraught, and even with Medical insurance, over $2000.00 in debt in medical copays, etc.  I know, I know, $2000.00 doesn't seem like a lot...but when you are on short term disability and you have mouths to feed, and a roof to supply, its like a mountain on top of your shoulders (painful, aching shoulders by the way). 

  • November 2010 - Hershey Medical Center, Hershey PA
After returning to work Part Time, I was still having the fluorescent lighting/sunlight issues, where I literally would swell around my neck, my fingers, my ankles...whenever I would step into the light or spend a significant amount of time in lighting.  I ended up swelling so badly I couldn't breathe properly, so I made my way to the HMC ER, where they once again treated me for Lyme Disease (it was an awful series of antibiotics)....I should mention that I never had one positive Lyme test - and I had four.  Bloodwork was done and they referred me to the Internists at Hershey, who discovered that I had a positive ANA/SSA/SSB blood panel, along with my ESR was still elevated.  I was referred, FINALLY, to a Rheumatologist who diagnosed me with Primary Sjogren's Syndrome (pronounced Show-grins), Fybromyalgia, RA, Osteo-Arthritis in my hands and fingers and Raynauds Phenomenon...I also had one marker test positive for Lupus (which I still believe I have), but another was negative so they will not officially give me the diagnosis.  I was started on Plaquenil and Humira...The Humira made me feel awful (I have a bad reaction to most medicines), but the Plaquenil didn't give me any real side effects, so I ran with that. 

I returned to work full time in December 2010...I tried so hard to do my best, but struggled with every day normal activities that I used to be able to do at the snap of a finger.  I developed brain fog - I couldn't think simple words through in a conversation - I was in so much pain, throughout my whole body, that I used all vacation, pto and flex time I was given in 6 months...plus, FMLA.  Finally, this May 2011, my body had had it with me...I crashed, hard.  My face started to swell again, my eyes blurred, the neck pain was too much to bear and I just couldn't do it anymore.  At this point, I'm back on short term disability - trying to figure out how to handle this disease, this life I was given...and still keep my kids, my husband, my family, my employer, my friends all happy.  To be honest, I'm pretty much lost at this point.  Below is some information regarding Sjogren's, Pseudo Tumor Cerebri, and some other topics I touched on.  I've also uploaded some (embarrassing) photos of the changes that Sjogren's has made to my face, my neck, my eyes...and what happens when I over-do it, or go in the sunlight/fluorescent lighting too long.  If I have to be at home, stuck in the house missing out on vacations and celebrations and every day life, I figure I might as well try to educate some people and share my story, in hopes that if someone else is going through something similar, they become their best advocate.  Knowledge is power, and even though this disease is ever-evolving, there is still plenty of research that can be done and needs to be done.  Please, share with your friends, family, whoever - and feel free to share your comments..thoughts..concerns.  :o)

Me, 2 years ago. No swelling, feeling good.  It lasted 1 day.


Right after recovering from Gallbladder surgery. I felt like I could live. I was still in pain, but nothing like what was yet to come.








After going back on Short Term Dis, spending 3 wks inside. The swelling is down, its bearable.
 Sunlight exposure,  I develop way more swelling on my right side than left, but my left side does flare up.  It feels so heavy, it pulls on my face.  The salivary gland on the right side of my face (not my neck) also swells, and becomes quite painful.
 A medium bad day, after going to the grocery store the night before.
 This is what Sjogren's does to your eyes. They become so incredibly dry, it feels like sand rubbing against them...and no matter what you do, it doesn't just go away. Eyedrops do help occasionally, but sometimes, it just doesn't stop. It just makes it feel like sand, water, and your eye. Not much better than just sand.
 And another.
This is a combo of right and left...It gets to the point that it's difficult to swallow, though I've been checked for anaphylaxis, and it's not internally swelling...its more a surface, skin reaction, than anything. And I lift my chin to show that I am not pushing my face down, creating a "double chin" if you will...

Although these pictures are seriously, down right embarrassing, I felt like I needed to share them with everyone.  Even though you may not think they are that bad, I am so incredibly ashamed to leave the house (when I can even tolerate it) because of how I used to look, and how I look now, not to mention the fatigue associated with doing ANYTHING.  Sjogren's is a horrible disease, and I hope that you will take the time to learn about it, and educate those around you as well.  Thanks for reading my first blog. :o)