From Here to Health

My journey back from autoimmune disease

Fitness Friday

I still didn’t weigh.  I think I will at some point, but I’m just not feeling it yet.  My measurement are:

Waist – 25 3/4 inches (1/4 inch loss)

Hip – 33 3/4 inches (1/4 inch loss)

Thigh – 23 inches (same)

Ok so not huge, but a little movement.  That seems promising:))

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Health History- Continued

I think we left off with my visit to the Rheumatologist.  I had been to rheumatologists in the past.  I had actually tested positive for rheumatoid arthritis before I ever had my kids.  Then years later I was tested again and it was negative!  It was all very confusing.  They tested me for RA again and it was negative, but my SSB numbers came back elevated and along with my list of symptoms was enough to get a me an official diagnosis of Sjodgren’s Syndrome.   I had never heard of Sjodgren’s!  I was relieved to find out that my condition had a name because for me that felt like a first step in trying to treat it/manage it.  However, as I learned more I began to get really scared.  My doctor told me I had the most dangerous complication from Sjodgren’s which was vasculitis.  That was why my arms and legs hurt all the time.  She also explained that the ringing in my ears was due to inflammation in my orbic nerve.  She continued by telling me that her only other patient who presented with my symptoms (who was also my age) began having mini strokes.  Mini strokes!!  I was 32 with 3 small children.  Mini strokes were literally my worst nightmare.  I may be the only one here, but I had actually had thoughts about what the worst thing to happen to me could ever be, and it was mini strokes.  I had this picture in my mind of being trapped in my own mind, unable to communicate, but still lucid on the inside.  Watching as my family used all their time, money and energy to take care of me, all the while making them miserable.  It was horrible. And now here was the person of authority telling me that that was what was going to happen to me.  I was a wreck!  Isn’t it funny how what you think about in your mind will try to com to pass?  I have found that over and over again since I began on this journey.  Needless to say I began to change the thoughts that I let set up camp in my mind.

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More Health History

I think we left off with the breast infections, over use of antibiotics, and crazy viruses.  I think I failed to mention that during the whole fiasco with the breast infections, I was experiencing terrible yeast infections in my milk ducts.  The yeast was growing due to the antibiotics.  It was a vicious cycle of  staph infection…antibiotics….yeast infection….nipples more prone to cracking/bleeding….that made me more susceptible to another infection….and the cycle would start over again.  I ran this cycle 3 times before I ended up giving up the nursing.  This was all in 2008.  I have had issues with systemic yeast until about a month ago!  I truly believe that all my Candida issues stem from these incidents in 2008.  I think I may finally have them under control, but it still may be too soon to tell.

So, I quit nursing and things did get better.  For a while.  Fast forward to Thanksgiving Day 2009.  This is where, at the time, I thought all my health issues started.  In hindsight, I know that all these past issues were setting me up for a body way out of balance.  Anyway, on Thanksgiving Day 2009, I got this really weird pain in the back of my right calf.  It felt like someone had popped me really hard with a rubber band.  It surprised me so much that it literally took me down to the floor.  It quit hurting after about 15-20 minutes, but I spent most of the remainder of the day sitting down with my legs elevated.  Like I said, the pain went away, but I had this nagging feeling that something wasn’t right.  Nevertheless, it didn’t happen again that day and the next day was business as usual.  Just to fill you in on what “usual” was at that time, I will give you a brief synopsis of what was going on in my life at the time.

In 2009, I was a full time, homeschooling mom.  I had twin boys who were 7 and a daughter who was 2 (and a royal handful).  I was getting my Master’s degree in Social Work.  I had just gotten certified to teach Zumba and had a couple of classes that I was trying to choreograph routines for. I was an actor in our church’s children’s program on most Sundays.  I was cooking 3 meals a day for my family and my parents who live next door.  Throw in housework, homework, laundry, grocery shopping, pets, kids activities, paying bills….and you get the picture.  My darling husband has always been lots of help and was during that time as well, but he was working (and still is) nights.  It meant he wasn’t hear for much of this and if he was, he was often asleep.

Ok, so now that you have an idea of  what my days were like, we can continue.  The weird pain goes away until one day in December 2009, and it takes me down again as I am making my daughter’s bed.  This time I can’t shake it.  I start looking for answers.  I do some internet research and talk to a few of my nurse friends.  Everyone is confounded.  No answers.  Fast forward to February 2010 when I have a new symptom.  I was sitting in a lecture for school when my ears start ringing.  I mean loudly ringing.  I can hardly hear the lecture.  It wouldn’t go away.  This actually persisted for much of 2010.  It nearly made me insane.  I couldn’t sleep.  I couldn’t focus on anything.  I tried white noise machines.  I tried ear plugs. I tried keeping my iPod going 24/7.  Nothing worked.  I hadn’t slept through the night since my daughter was born, but this was an all-time low for my sleep habits.  I would sometimes go a week with no sleep at all!  There were nights when I was awake all night and I would really think…”They are going to have to commit me.  I cannot go on like this.  I am losing my mind.  Please just give me some drug that will make it all go away.”  Lack  of sleep will really mess with your mind.

During the day, I did my thing where I pull myself up by my boot straps just like I did with the nursing. Keep on going.  No breaks.  I didn’t do breaks.  During this time I was still experiencing my stomach issues.  I had nearly constant bloating, gas and cramps.  I had been to the dr., but never any answers.  I had a colonoscopy.  Nothing.  I had blood tests.  Nothing.  I had a lactose intolerance breath test.  Nothing.  The doctors continued to say I had IBS.  While I know some people might not agree, I think IBS is the blanket term for “we just don’t know what’s wrong.”  I knew there was some underlying issue at play here and I was determined to find out what it was.

In April of 2010, I had another new symptom.  My arms and legs began to hurt.  It was sporadic at first, but by June 2010, it was near constant.  It was a pain that was dull, yet pervasive.  It would ache up the inside of my arms and in my calves, sometimes radiating to my thighs.  All during this time, I was pumping my nurse friends for answers.  They agreed that something wasn’t right, but we weren’t getting to the bottom of it.  I went to an ear/nose/throat doctor to check my ears.  They said my hearing was off the charts.  I was hearing noises that no one hears.  My hearing had somehow gotten so sensitive that I could hear the electricity running to nearly anything in the house.  Even when it wasn’t on!  There were times when I didn’t know if the sound was in my head or outside my head.  My test was sticking my fingers in my ears and then seeing if I could still hear the noise.  If yes, then it was the ringing in my head.  Anyway, the ENT doctor said that I was fine.  I just needed some anxiety meds.  I was devastated.  She barely knew me.  I will be the first to admit that I have some anxiety issues.  I own that.  But much of my anxiety at the time was caused by the physical issues.  It was a vicious cycle.  I absolutely believe that my emotional issues played a role in getting me to this spot.  However, my physical issues had gotten to the point where an anxiety med just wasn’t going to do the trick.  They needed to be addressed from a physical standpoint as well.

Fast forward to August 2010.  I am in constant pain, I can’t sleep, my stomach hurts no matter what I eat, I have my same old chronic headaches…things are rough.  I am dejected because despite going to the cardiologist, internist, gynecologist, gastroenterologist, and otolaryngologist, I have no answers.  Alas, I have one more doctor to try.  The Rheumatologist.  This turned out to be the beginning of my answers.

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