Rough day off

When my eyes once again snapped open at 5 A.M., I had a feeling today may be tough.  I was at least able to zone a bit for a while, but not really fall back to sleep.  Maybe it was the sinus pressure in my head, busy pounding away, or the stress of realizing that our health insurance isn't exactly as great as it was said to be.  Any which way, I had a rough time getting up today.  I knew how busy the day was going to be.  I managed to get myself together, get the kids up, get my son to the lab.  He was amazing through the draw, despite having an hour wait because they weren't exactly sure how to order all of the vials.  He had 15 vials drawn.  (I thought it was 20 at first, but it was 15.)  He had the nurses giggling.  He's a little charmer.  ;)

After my appointment I went to my church.  It is a week of prayer and fasting.  I spent about an hour there.  I leave feeling so much better than I arrived.  Church is the only place I can break down.  I wish I could break down whenever I needed to, but it just doesn't work like that.  I had to run to WalMart for some household things, and since I had a little time to spare I decided to go visit my parents.

Ok, so I know that things aren't always as they appear.  I don't jump the gun, I don't get dramatic, I don't worry unless I have reason to.  I compile facts, look at the data, try to make reasonable assumptions, then wait for someone with greater knowledge to let me know if I'm right or not.  My mom had gone in for a colonoscopy last week.  They sent her home saying that she had too much iron in her colon.  They wanted her on Miralax twice daily to clean out her system.  Apparently, they said during the scope that very little is getting by so there is a blockage.  They thought that the Miralax would do it, but Mom doesn't think it's working.  I am hopeful that she is wrong.  She goes back next week for scope number 2.  We shall see.  I don't think that they can take much more of her colon without giving her a colostomy bag, but I guess we'll find out if we need to.  Otherwise the parent's are doing well.  Driving each other crazy, but doing so happily.

I had a doctor's appointment next.  I really didn't want to go because he didn't really take me seriously before.  My inflammation labs came back high, but after doing some thinking and looking back at some facts that I had forgotten, I realized that it could have been high from the sinus infection I was fighting.  I also found that being low on Vitamin B can have an impact on the tests, altering results.  As I suspected, that's what he said, too.  We discussed my sinus headaches, which he offered to CT scan.  The thing is, antibiotics over a longer period of time would likely help that, but since I'm allergic to so many, I don't want to wear out the welcome on the few that I can take.  I asked him for his thoughts on Levaquin (the antibiotic) causing tendonitis, (thanks Christine!) and he said that it is possible.  I asked him if it was possible for the shoulder.  He said it's unlikely but there's a very small chance that it can happen.  I am going to try some rotator cuff exercises and see if that helps.  He still has a misinformed concept of RA, I'm pretty sure since he once again told me that it can't affect shoulders,  but this time he listened.  I explained that I don't want drama, I don't think it's anything big happening yet but that something is starting.  He did say that I could see a rheumy if I wanted to, but I think that maybe I don't have all of the puzzle pieces together yet.  I've always been really in tune with my body, and I'm very analytical because I'm so intrigued by everything medical, so I'll just keep on keeping my eye on things.  Not too bad.

Well, work in the morning.  Have a wonderful night!

Thankful... for sleep!

Today I am thankful for a quick nap and an early bedtime.  <3  I am also thankful for having the forums available to ask questions and find answers when I need them.  I like answers.  I'm a lot more hung up on them than I like to admit.  However, tonight I like sleep & my book more... 
Good night!

Coming around

Well, I spent the majority of the day simply exhausted.  I guess that all of the worry about my health and the stress piling up again isn't helping that.  I would love to just take a month off, lay low, take some "me" time and try to recoup.  Instead, I have church to help ease my heavy load. 

I am very thankful for my small group, for my church, for my faith, and for my relationship with Jesus.  I was especially thankful tonight that Emily came with me.  I was afraid that she'd be bored, but she seemed to feel at home.  While it's important for everyone to have faith, I think that it's particularly important for my Emily to have faith.  And on that note, our aunt sent us the best forward tonight.  I will leave you with this.  It is very similar to what I try to pray, though I'm not nearly that organized.  I'm heading to bed. Good night!


Dear Lord, I thank You for this day,
I thank You for my being able to see
and to hear this morning.
I'm blessed because You are a forgiving God and
an understanding God.

You have done so much for me
and You keep on blessing me.

Forgive me this day for everything
I have done, said or thought
that was not pleasing to you.

I ask now for Your forgiveness.
Please keep me safe

from all danger and harm.

Help me to start this day
with a new attitude and plenty of gratitude.

Let me make the best of each and every day
to clear my mind so that I can hear from You.

Please broaden my mind
that I can accept all things.

Let me not whine and whimper
over things I have no control over.

And give me the best response
when I'm pushed beyond my limits..

I know that when I can't pray,
You listen to my heart.

Continue to use me to do Your will.
Continue to bless me that I may be
a blessing to
others.

Keep me strong that I may help the weak...
Keep me uplifted that I may
have
words of encouragement for others.

I pray for those that are lost
and can't find their way.
I pray for those that are misjudged
and misunderstood.

I pray for those who
don't know You intimately.

I pray for those that will delete this
without sharing it with others

I pray for those that don't believe.

But I thank You that I believe
that God changes people

and people changes things.

I pray for all my sisters and brothers.

For each and every family member
in their households.

I pray for peace, love and joy
in their homes; that they are out of debt
and all their needs are met

I pray that every eye that reads this
knows there is no problem, circumstance,
or situation greater than God.

Every battle is in Your hands for You to fight.

I pray that these words be received
into the hearts of every eye that sees it

in Jesus' name. Amen!

A Surprising New Start

As I mentioned last week, I've known for a while that something was happening to me.  For a while I thought that maybe it was RA (Rheumatoid Arthritis).  I asked my doctor.  He told me that RA doesn't affect joints like shoulders or elbows.  I was angry that he wouldn't hear me out, and then he lied to me.   I vowed to only see his nurse practitioner after that.   I wrote about the next visit (from last week) here.  In short, I started telling the new nurse practitioner about my weirdest symptom- my foot that likes to go numb.  The foot isn't nearly as annoying as the shoulder.  My shoulder has gotten so bad that I often have to use my right arm to pull my left arm down.  I told her about the shooting pains that I have in my fingers and knees, bad enough to almost make me drive off of the road.  (I forgot to tell her about how lately my voice has started giving out sometimes.)  She listened.  I pointed out that I have 2 sick kids; I don't need drama.  I like to analyze.  I carefully weigh things before ruling in or out.  I'm not paranoid.  And I don't say things for the drama.  I guess that maybe doctor's aren't used to that?  Nurse practitioners are better listeners.

My point?  I got the phone call today that I have been waiting for.
Me:  Hello?
Dr's: Hello, this is ________ from Dr. M's office.  I'm calling about your blood test results.  How are you feeling?
Me:  Oh, getting better finally, thank you!
Dr's:  Are you still pretty tired?
Me: Yes, but I'm getting used to that.
Dr's:  Well, that would be because your Vitamin B is very low, and you're anemic.  The doctor would like you to come in for shots every month.
Me: (Relieved) I expected that.  I hope that it helps.
Dr's: That's not the only thing.
Me: (Heart stopping)
Dr's:  I have your inflammatory panel here.
Me:  Am I RF+? (Probably said too quickly)
Dr's:  I don't see that test here.  I see your ANA.  That is negative.
Me: Well, that's good!
Dr's: But your inflammation is high.  Very high.  Your SED rate and CRP are both high.  Your SED rate is 58.
Me:  ...........................

This is about where everything went fuzzy.  I don't remember the majority of the rest of the conversation.  My mind quickly went back to when Emily was put into Shands in October 2010, the time that she was diagnosed with Dermatomyositis & Mixed Connective Tissue Disease.  With the DM raging out of control, her SED rate was 39.  (I could have sworn it was 79.  I had told a few people that it was 79, but I just went and looked at her old labs and it was 39.)  So, my inflammation is higher than Emily's was when she was the absolute most sick of her life. Obviously, the good doctor was wrong to brush me off.  Clearly, something is wrong. And now that I have proven that, now HE wants to see me.  He had better be into treating me like I may know something because if he gives me that old attitude, I will be finding someone else.  Before I didn't care because I had his ARNP's to see.  Now I may have to only see him, if he runs his practice like our pedi does.  I may love his nurse practitioners, but if I have to see the main doc all the time now, we need to get along. 

So, after I had some time to absorb this, I wandered over to one of my favorite sites, Labtestsonline.org.  I looked the CRP back up, and the SED rate, too.  Just to make sure.  The SED rate normal range goes to 15.  And both are used mostly for degenerative autoimmune diseases.  Yes, they can be elevated for infections, too.  But I don't think (given my other symptoms) that just a little sinus infection could make it that high. 

So, what am I thankful for today?  I am again thankful for doctors that listen, (or at least their ARNP'S!) I am thankful that this has started the ball rolling on trying to figure out exactly what the heck is wrong with me.  I am (as always!) thankful for my kids who, aside from simply being completely amazing, will now help to be my support as I support them.  We went shopping with the Christmas money they got today.  I never had to raise my voice once.  I hate shopping, dread it, usually have panic attacks shopping, but today was actually kind of nice.  And I am thankful to the friend that sold me his laptop that is almost brand new.  I really, really needed a laptop.  I was willing to buy a new one, but I think that this one is better for me than any new one in my price range would have been.

Thankful Sunday :)

Quite simply, today I am thankful that I was able to hang home with the family today.  Not only did I get to sleep in, which I desperately needed, but I think I may have relaxed enough to maybe start healing.  Tomorrow the kids are demanding shopping.  Lord help me!  It may be tough to find something to be thankful for after that.  Oh, how I despise shopping!  Hopefully they will have fun  :)

Already missed a day! UGH

So... this post will be for Friday. 

Today I am thankful to have my antibiotics kicking in.  Instead of going home and napping, I was actually busy.  I still feel crappy, but a much better quality of crappy.  I was also VERY happy to have my voice back!  Far from all of the way, but it is at least back enough so that I can talk to people.  A very necessary thing at times.

As always, I am thankful for my family.  I marvel daily at how amazing they all are.  My son is like a little ball of cuteness and cuddle.  And my girls are so nice to have around to talk to.  We still have a long way to go with Emily in terms of social skills, but for now we gently remind her that most people are not rheumatologists in training and have no clue what she's talking about when she launches into her life story.  I am a mixture of amused and sad by this.  It's what she knows.  With Zach you hear about Lego's, Transformers and Pokemon.  With Gir it's Tumblr (which she has banned me from), art & her friends.  With Emily it's medical conditions and trauma.  That's probably not good.  However, everyone she meets is in awe of how brilliant she is, so it's not all bad.  I just wish that we could have her add some happier stuff into the mix.  I am just so happy to be their parent.  I wonder every day where I would be without our 3 little people.  I am so proud of them, and so in love with them all.  I am so glad that I am not like so many other people that don't enjoy or appreciate their kids.  Why have kids if you can't enjoy them?

Smints and Naptime

It didn't take long today before I realized that I really wasn't ready to go back to work yet, but I was kind of stuck. I figured that, given my still- ballooney- headed state, I could at least enjoy. While testing my voice on the drive, I realized that I sounded like a dying cow. Not putting together that I choked every time I tried to talk, I also attempted to sing. The sounds that have emerged from me today had me absolutely hysterical!!! I was seriously cracking up on my drive. And choking. A lot. By the time I got to work I had already started on my smints. After I quit smoking in 2001, I searched high and low for a replacement. It took several years but I finally found mints. Nothing special; I buy Starlight mints.
I lovingly refer to them as smints. I have been known to have multiple pockets and the black hole (ie my purse) stuffed full of them. When I run out I tend to panic. Like an addict. Yeah, cuz' smints are hard core. And today they saved my life. Thank you.

My smints may have helped me get through the day but I was like a whipped ballooney head when I got home. I crashed. On my bed of awesomeness. It was beautiful. Yes, I may regret this in the morning, but for right now I am in a groggy bliss. I totally needed it. I have provided many people with someone to laugh at today. Like that wasn't hard enough, I actually had to work & be functional all day. I conquered it. I worked hard for that luxury. I earned it. And those are my thanks for the day.

Of course, thank you Jesus for saving us all from our sins, & for loving us despite our many flaws. I love you, Jesus! Amen <3

Day 3 Thanks :)

Today I am thankful for many things.  While still feeling like I have a balloon stuck in my head, I spent the day very thankful to be home.  I'm still filled with the "doing stupid things" mess that I become when sick.  Which makes me marvel at my little girl.  While I am convinced that I am dying when I have a sinus infection, unable to focus or function through simple, normal tasks, I have a hard time being able to tell when she is sick.  Which really makes me feel like a wuss, but also really makes me want to be just like her.  She seems to understand that I am not always Super-Mom.  I am, sadly, still just mortal.  She is very understanding, and she tries hard to be helpful.  Sometimes she even tries to "mommy" me. 

More than that, I truly appreciate the relationships that I have with all of my children.  Don't think of me as a pushover- if they need to be disciplined we take care of it.  Which is probably why my kids are filled with pure awesomeness instead of anger & spite.  But also because we talk.  We communicate with our kids.  Oh, and we respect them as people.  How do they respond?  With love <3  It's so cool to be able to spend days home with them and never have to raise my voice.  (When I have one.  Today I couldn't if I tried.)  They are so funny together, and individually they are all just so different but enjoyable.  Each of them is totally unique, but so sweet.  I really feel sorry for people that don't have this type of relationship with their kids.  Maybe it's because I have two sick children?  Maybe it's because we see the more important things in life, so we worry less about the stupid junk?  Any which way, this is why I wanted to become a parent in the first place.  If you can't enjoy your kids, why have them?  And no, they're not always perfect; just most of the time.  :)

Lastly today, I am thankful for humor!  Thanks to a friend, I have discovered a new blog obsession to occupy what little free-time I normally have.  She made her own version of the pain scale.  My favorite post of hers thus far is "Dogs Don't Understand Basic Concepts Like Moving".  My kids came over several times while I was reading this to ask if I was okay.  I laughed so hard that I cried.  For a very long time.  Laughing makes everything better.  :)

Is it legal to nebulize and drive?

Seriously.... is it?  Heading to the hospital for Emily's infusion today I was very thankful for a cigarette lighter adapter on the nebulizer.  My chest was all tight and heavy; I really needed the medicine.  I kept both hands on the wheel  :)  I found a way to balance the "peace pipe" end between my hands and the wheel.  I knew the road, a long straightway.  Passing by officers (I have to admit) scared me a bit.  I was hoping that if I were to be pulled over, they would be able to tell the difference between albuterol and say.... crack?  But it certainly had to be done.

My biggest thankful moment today, the one that made my heart swell the biggest and melt a bit, was with my little people as we were heading back home.  We got down to the lobby in the hospital where I made Emily zip up her jacket.  (It may be Florida but it was 35F out there tonight.)  It has this funky double-zipper that makes it really hard to zip.  I don't know how they expect a kid to do this thing when I have a hard time with it.  I admit- I was struggling.  My little man came over & fixed it for us.  He was so sweet about it, so darn cute.  He is truly such a sweet, sensitive, amazing little man.  He shrugged it off like it was no big deal, but that is just how he is.  He may be the first to admit that he's lazy but he's always there to help- especially when it's for me or his sisters.  Sometimes I think that he has more class than many adults.  I am so blessed to have such caring little people, and that I get to witness the love that they have for each other.  For all of its turmoil and chaos, I wouldn't trade my life.  Not for a minute.

Thankful for medical personell that listen!

So, day two brings about what will likely be a recurring theme for me.  Today I am thankful for doctors and nurse practitioners that listen.  Usually it's our rheumy or pediatric groups.  This time it's for me.

As my Facebook friends know, I have a sinus infection.  What my co-workers and a few other people know is that something else has been happening.  I don't know what it is, but I feel like I found a person that may try to help before it becomes a huge issue.  It started years ago as a pain in my thigh that would come and go.  No big deal.  Then I had a few episodes of my hands locking up, often at work, then while driving.  I've had these crazy random, shooting pains that pop up in my knees, shins, & arms, and also hips that occasionally feel like they're on fire at night.  I've had random inflammation in my hands that made me have to wear my rings around my neck, and very hard pain in a couple of fingers.  When I started writing out Christmas cards my hands locked up.  But the weirdest thing, the thing that I started with, is the numbness in my foot.  I thought in the beginning that it was maybe my shoes were too tight, or the Dr. Sholl's air pillows brought my feet too high in the shoe.  Well, now I don't even untie my shoes, my air pillows are far from pillowy, and my foot keeps going numb.  I can go for days without issue, or continuously for days.   This isn't including the jacked shoulder or the tendonitis in my elbow.  I had broached the subject of RA before with the head doctor.  He lied to me, telling me that RA doesn't affect elbows or shoulders.  He didn't even let me get to hands.  His nurse practitioner however... I didn't even suggest it.  (I swear!)  I had decided that maybe all of my symptoms pointed to something else.  She asked me if we had any family history of RA and if I had ever had an RF panel run.   Nope.  So, she looked through my labs, saw that my Vitamin B tends to run low, and ordered the RF panel, ANA, & CBC/ CMP that will include vitamin B, as well as a check on my thyroid since it is slightly out of whack.  Thyroid issues are autoimmune, and once you are opened up to an autoimmune disease it can be like opening the floodgates.  I asked if the vitamin B can be a sign of RA.  It may sound weird but once you kind of know how things work...   She didn't really say, but said that it certainly couldn't help it.  So we shall see.  They took 5 vials of blood.  We should know some results in a few days.  Of course, as I pointed out, Emily has every possible marker glaring out what her problems are, while Zach is sero-negative (arthritis present but doesn't show in the blood work).  I'm just happy that someone has taken this seriously before it becomes crippling.

Oh, & I'm also happy that I was home sick again today instead of sick at work.  I knew that I needed to rest & recoup some energy.  Tis lovely to be home and resting instead of running around like a chicken with my head cut off all day!!! 

New Year's Resolution

I am the type of person that either doesn't make new year resolutions, or I make them & don't stick to them. However, thanks to an amazing friend of mine asking people to make a resolution in memory of a special little girl named Marlie who lost her cancer battle this week, I thought I would try to blog daily about little blessings & what I'm grateful for. I spend much of my time thinking about the bright side of things & trying to stay positive. I kind of have to. After all, my previous resolution for the new year was (jokingly) to not have a nervous breakdown. At this point, we've already been through so much that I feel I'm way too strong to fall apart. I can say that this is why I don't drink. As evidenced by my years of smoking, I don't just do things halfway. So, since that was just silly & Marlie seems to have been an amazing child who deserves to be honored, this seems more appropriate.

I resolve to make a post daily of what I am thankful for. It may be small, it may be grasping for straws, but it will be positive. And perhaps we can turn a few people around, make them count their blessings.

If you have ever listened to missionaries speak about their trips, many talk about the water. Many foreign countries have little clean water. Their water causes great sickness. Can you imagine not even having clean water? Living in a hut made of mud? We are so blessed to be living in this great country. Yes, we're struggling, in a recession, the future looking uncertain. However, our worst still can't compare to the best in some countries. So, today I am very thankful to live in the USA. I am thankful to have a real roof over my head, a job that I like, food on my table, 3 amazing children & a husband that I couldn't love any more than I do. We have everything we need. And there are the little things like butterflies, wild flowers, gentle breezes... I'll save those for another day. We are blessed <3