Thankfully Reminded

I apologize for the blog taking a turn into my diagnosis and thoughts for a while, but I need to process all of this.

This week, I am reminded to be thankful. 

Thankful that whatever this is, while serious is not eminently life threatening.  I am praying for a young mother and friend in my home town.  She is 5 mths pregnant with her third child and was just diagnosed with breast cancer.  My battle feels small next to the mountain she will have to climb.

Thankful for two kiddos that understand mommy is tired and needs to rest.  Snuggled against me and half on top of me they watched a movie in our bedroom while mommy dozed.  There is something so calming about your kiddos snuggled into you on a windy day.

Thankful for a night out with old friends filled with laughter before we leave on this grand adventure.  They helped me remember all the crazy things we have done in the last 11 years.

Thankful for modern medicine.  Even though this is scary at times we a blessed to be in a country where I can be treated.

I am mostly thankful for my husband, family and friends that keep encouraging me to move forward.  My sister says, ''you are a priority, do not forget that''.  So easy to forget when raising children, and so easy to think of it as being selfish.  Lesson, I need to chose when to be selfish for my health, rest, take meds, so I can be unselfish and giving of myself  with renewed energy and better health.

And another Theory

UGH!!!!!

This diagnosis process is so frustrating and emotionally taxing.  We are now start month 5, yes, month 5 of tests and doctors and blood.

The Rheumo was more personable yesterday, so that was a saving grace for me.  He says all my Lupus numbers are borderline positive so we need to 'wait and see'.  Ok, I can do that.  I was also told that my uric acid is double the normal level, so the Gout that runs in my family is headed my way.  Just one more health similarity I have to my dad.

So now, it's on to the Hematologist next week.  When I explained the order to start taking baby aspirin daily to the Rheumo and spots on my brain he said, ''oh, positive lupus anti-coagulant tests, vasculitis. hmmmmm.''   Lupus anti-coagulant is NOT lupus, just a misnamed blood disorder.  The vasculitis refers to the hyperintensities on my brain MRI, where blood flow has been cut off and caused the little dead spots of tissue.

The sticky blood problem I might have comes under a couple names.  APS/Hughes Syndrome and is only recently discovered in the early 80's.  It comes with whole host of potential health problem, but there is treatment.  Oddly, it can mimic MS so they have found many patients misdiagnosed with MS with actual Hughes Syndrome.

Many of my symptoms line up with this problem, so maybe we've found the next theory.  I just want an answer, want to know what I'm fighting so I can move forward!  The emotional limbo is torture, more so than any problem I'm having.

This Diagnosis

Well, we are getting closer to knowing WHAT is going on with me.  The doctors have been acting like vampires for the last 4 months taking copious vials of blood.   Not kidding here, at least 65 vials have been drawn since the middle of June. And then there was redrawing of blood, because the first blood was tainted when it got to the lab.

There's the insurance now asking the Rheumotologist to please call them personally because they want to know WHY a third MRI has been ordered.  This one is just of my right hand.  The big ones were the head(in July) and then the spine MRI about three weeks ago.  The spine one I was in a tube, like a coffin for two hours.  No so fun.  They tried to brighten it up a little by putting star stickers like you get in kindergarten on the ceiling of the tube.  Bwahahahaha!  Still not fun.

The Rheumo has absolutely no bedside manner.  Very abrupt and ''ok, see ya when we get that blood work back have a great day''.  Yeah, I'll just keep hanging on the bare threads that remain of my bravery, thaaaaat'll get me through another month of the unknown.  Maybe I have him to thank for sending me over the edge into the panicked abyss again.  It was awesome, two whole days I don't remember and two really fuzzy ones last week.  Better now, meds are good.  I think I might keep them for a while.

Hope you all can keep up the the abbreviated specialist names because I can't spell them and neither can spell check here on blogger.

I still have to see the hematologist because the latest blood panels for Lupus have come back positive.  There is some small percentage that they could be wrong, but ''probably'' not based on my blood work and symptoms according to the Neurologist.  So we are GUESSING that the culprit is Lupus at this point and not MS.  For some reason Lupus seems doable and MS is just scary SH**.  Sorry, I normally don't cuss but I'm passed correctness right now.  Four months in emotional limbo does that to ya.

The Hema is suppose to call me, hasn't happened yet.  Might start pestering them tomorrow, ya know whole California move is looming and what not.

Going back to the therapist to talk out the new more life altering craziness.  Rich went with me for the first time last week.  Can't love him enough for that.  Lots of the big life questions to get straightened out.  Existential this and that.  Learning to live with dependencies and weakness.  Deep stuff.  The kind of uncomfortable I hate to feel, but probably need too.

So, that's the diagnosis so far.  In short, we still don't know, think we might have an answer, but in the meantime trying to maintain mental and emotional stability.

These Hands

Lately, I've been thinking a lot about the scene in Neverending Story when the big rock creature starts talking....''these hands, these hands, used to be so strong.''  He has this confusion about how they could have failed him.

I understand this.

For a couple years now, I've noticed a clumsiness when grabbing things.  Either I miss judge a distance and end up knocking things over or I go to put something down my hands seem to let go before I want to.  Many, many cups of coffee have been spilled and/or broken in this way.  I always credited it with sleep deprivation after having Trent almost two years ago, but that's not such an issue these days.

Then came me being tired every afternoon,  no matter how much sleep I get.

After that was the depression and anxiety of last year which came out of no where.

And now,  there is a weakness in my legs and arms.  I can only describe it as the feeling after a really big workout when muscle fatigue has set in.  If I vacuum, my biceps feel it, if I go up the stairs my thighs and calves are aching at the top.

Something is definitely going on.  We have multiple sclerosis(MS) on both sides of the family so if I were a betting person that is where I'd place my money.

Oddly, we are calm about this.