Telling it like it is

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I always fear that I’m doing overkill on the blog about what we are going through but when I go back and read old posts I realize I don’t tell it like it really is as often as I think I do.  I sometimes picture everyone sitting at their computers rolling their eyes and saying, “what a whiner, would she just get over it already?”  And sometimes I see friends posts or comments about parenthood or childbirth or pregnancy and all the stuff no one told them and I think- I warned everyone, I was honest, I told it like it is!! And then I go back and read the blog and realize that no, I glossed over it all a lot more than I realized.  I’m not going to gloss over this latest health disaster, because I want to remember back to how I made it through this and realize that I AM strong even when I feel like the opposite.

Also, I told Facebook they won’t see my scar pictures, but you all won’t be so lucky.  So if you would rather have the “surgery’s done, everything went fine..” version of the story, stick with Facebook.  If you want the blood and guts of the story, come here.  You’ve been warned.

~~~

Today, I just woke up from a 4.5 hour “nap”.  I’ve been worried about how I can get through these next few weeks without any pain medication, but it looks like it won’t be an issue to just sleep through it.   Wake me up for Christmas.  Oh wait, I still need to go to work this week.  So thankful our daycare provider is taking the kids when I’m feeling especially crummy.  I did get Xanax today, so I’m feeling better about the surgery.  I”m not actually taking it, but knowing that I could will definitely help.   I also talked with the doctor about the overwhelming bloody taste in my mouth and smell in my nose the past few days (rather unappetizing) and he said talk with the ENT.  The ENT’s nurse says, talk with your primary care doctor.  Thanks, all.  So helpful.  I had called ask-a-nurse and they said “that’s really weird, you should go to the ER.”  Don’t call ask-a-nurse, they ALWAYS tell you to go to the ER. They must get a kick back. So I’m going to suck on hard candy and hope it goes away.

Ive also spent a good amount of time the past few weeks wondering why on earth did I get a tumor in my parotid gland?? This is a very odd thing to have happen, and quite rare.  And some days I think, why not?, that’s just the kind of odd thing that tends to happen to me.  And other days I’m convinced there HAS to be something else going on, something to explain all of this madness.  As it turns out, there just might be.  There is an auto-immune disorder that would explain the eye infections, mouth sores, dental decay, fatigue, muscle pain, rib pain, numbness in my hands, and even parotid infection.  The doctor agreed it sounds “highly probable” and that he could almost make the diagnosis on clinical symptoms alone.  But he wanted me to talk to the ENT about doing the testing.  The ENT’s nurse said, talk with you primary care doctor.  I see how this works.

Thankfully, I have excellent health insurance so even when the doctors don’t want to deal with me, I can just look up my own specialist and skip the run around.  So when this surgery is over, I’m going to see a rheumatologist and get the blood test for Sjorgrens Syndrome.  Pretty straight forward stuff, and how awesome is it that there is a blood test?  A yes or a no, just like that.  I’ve really resisted the fibromylagia diagnosis because it seems like such a cop-out for doctors.  And at the same time, I can’ deny the overwhelming muscle pain and fatigue.  It’s unlike anything I can describe in words, just totally debilitating at times.  (See 4.5 hour nap, above.)  Something is going on, and it makes sense that this tumor has a cause, rather than just a completely random occurrence.  I’m only 30! I’m falling apart at the seams despite doing everything in my power to stay healthy.

So I’ve been feeling pretty awful lately.  I’m stressed about the surgery itself, wondering if it still could be cancer, battling another cold, worried about those I work with running out of patience with me, worried about medications, and my grandmother, and my Dad, and Melissa, and Leah.  Sad about my failings as a friend, mother and wife.  Overwhelmed by everything that has been happening and that still needs to happen.  Feeling like I am running out of “fight” for whatever is wrong with me.  Somedays, feeling like it wouldn’t be worth it at all if I didn’t have my amazing family.  Other days, feeling hopeful that 2012 really will be better.

A blog that I’ve been reading about Chronic Illness really spoke to me today.  I’ve been depressed enough at times the past few months to have some pretty dark thoughts,  but I also know how extremely precious life is and I want everyone to feel assured that I have no intentions whatsoever of acting out those thoughts.  But I also understand how someone gets to that place.  It’s been a really, really difficult year for me and I’ve been hanging at the end of my rope for months.  That’s the honesty that I usually don’t share on the blog but I’m telling it like it is.  This has been that hard.

11 more days, I can work towards recovery.  And look at the next steps.  And regain some hope that things won’t always be this way.

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5 responses »

  1. I understand what you mean about saying that those thoughts have crossed your mind, but that you would NEVER act upon them; and that now you TRULY understand where chronic pain patients that have acted upon them come from… I tried to explain that to my husband one time and he really FREAKED! It was very difficult for me to get across that I am not suicidal myself, but that now, after years of suffering, a person can see things from a very different perspective…and not always a good one.

    I wish you the very best with your surgery, and although I would never wish an immune disease on anyone, it would be wonderful to have some answers. Then you can go forth and get to work on healing yourself and spirit, which it sounds like you have plenty of!!!

    Thanks for the great read.

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