Momma Update End of August

Ok. So last week I saw a new endocrinologist and had an ultrasound and bloodwork done. Read about it here. Well, the very next day (thurs) I got a phone call from the nurse saying the Dr wanted to see me in office ASAP during her lunch hour.
I didn't tell you. Because you read that and just thought the worst thought didn't you?! That's why I didn't tell you. I did it too, I don't blame you, it's only human.
So we waited. A WEEK! Waiting is the worst for me.
Happy to say the appointment was today and it wasn't all bad news! In fact, we taking it as hope and therefore good news.

Where to start. hmm
Ok so I DO have two diseases. Hashimoto's Disease & Graves Disease.
Hashimoto's = Hypo Thyroid Disease
Graves Disease = Hyper Thyroid Disease

Momma = Human See Saw

I DO NOT have Celiac Disease...or at least not yet but with Auto Immune Disease and no immune system you never know about the future. *sigh*

SO. This Dr. I like this Dr. I FINALLY feel like I'm in capable hands after a year of being drug through the mud with the CN. Why in the world did that Dr not find I had both diseases when I asked time and time again why my bloodwork wasn't showing normal even though she said it was "normal". Anyway.
This Dr is paying careful attention to everything and treating me in a whole body way. She wants the best for me. She is capable, and I trust her. This is good.

Here's the thing. She would ideally like me to try meds and go into Graves Remission and live the healthiest life possible and feel better without such an extreme thing as surgery because of complications and living without a necessary organ needed. BUT!

Why oh why is there always a but?! 

At the moment my Graves Disease is considered "in remission". Don't get too excited, it doesn't always last long and I'm still dealing with almost ALL the symptoms/side effects. So therefore, she can treat the Hashimoto's but, if ever, they are battling and hurting me at the same time there is no way to treat both, at the same time.

Therefore...

It looks like Surgery is the best option for me, even though surgery WILL NOT cure my Grave's Disease and I will be fighting it the rest of my life, it will stop the Thyroid battles (after we get meds straight which can take a year).
Should I try again to fight with meds it will be me always trying to catch up, always fighting one disease or another. I just don't think I can do that anymore, honestly.
So, Surgery it is. I am referred to a surgeon whom I'll meet with within the month, to discuss surgery, etc. 

                                                                             But...

There's that darn word again.

I have a secret I haven't shared with many. 

I have been planning on getting Lap Band Surgery once I got my Thyroid taken care of. For some reason I thought to ask her about it today. And she thought it a GREAT idea for me. I was kind of surprised to be honest. She thinks the surgeon might consider it a necessity BEFORE Thyroid surgery. Because if I were to be in a healthier status prior there's less complications that could occur. Also, the 6 months to a Year after surgery are rough. It takes time to get the meds right and during that time if I continue to gain weight it's very dangerous on my health and it WILL take it's toll. With something like Lap Band battling that it's easier and better for my body. 

I have an appt for a seminar the end of Sept so I'm going to keep it and wait to hear from the surgeon. If it ends up that it is medically necessary to have the Lap Band first then maybe he can rush me through the process and I will not have to wait the 3 months that is insurance norm. 

And Onnnnnneeee more thing. 

I know. I'm a mess, whaddyawantfromme?!
So I also have a Tumor on my Pituitary Gland in my brain.
Don't panic. I've had it at LEAST 10 years, and it's never grown thus far.
But this Dr, she KNEW about it. I hadn't even told her. But she saw it on my paperwork and part of the blood she took last week was checking the hormonal levels of everything that has to do with the Pituitary. She also ordered an MRI because it's time to check it again. Plus, one more kidney function test in which I have to do/take at the hospital. The MRI is next week (I've been asking the CN for one for OVER A YEAR NOW).
So yeah.

I have a long road. I have a disease I will deal with the rest of my life. But you know what?! Right now, at this moment it looks like within a year I will no longer be dying and, instead, I will be living with a disease. But I WILL BE LIVING

And BOOM!! There it is.

HOPE

I'm not a butterfly yet. But I'm struggling to get out of this cocoon, I'm fighting for my life and I'm about to be bloody, wet, sticky, and crumpled. 

Once I dry off maybe, just maybe my wings will strengthen and stretch.

Homeschool-Reading Challenge

Author Charity Hawkins challenged her readers to read more with our kiddos this year. By the way, if you haven't seen my recommendation for her book The Homeschool Experiment now you have. Buy it. Read it. ESPECIALLY if you're in your first years of homeschool. Much fun.
Here she challenges us to list our books and join her in reading more to our kiddos.
This was already one of my goals for the year so it fits in really well with our current happenings and makes it fun along the way.
Join us?

Follow the instructions on her blog linked above.

Here's my post on her comments:
We are actually reading Narnia The Magician’s Nephew right now and will go on to The Lion the Witch, and the Wardrobe next and so forth. Will review on my blog once we are done reading each book. 
I even sport an english accent for the characters, hehe…my husband records me. *sigh* he’s just jealous he’s not as cool as I am when I’m British. 

And I mean it. He's so jealous of British me he can't stand it. I would appreciate it if he didn't plan on blackmailing me in the future with said recordings but, alas, we are pranksters in this family so I can only imagine what things he'll think up to embarrass me. Oh Joy.

Maybe next I'll get me a littewl flow wah on top o me hAt, whachtyou thank? And mAYbe en ehmbrilla innit?

My struggle. My journey. Not yours to share.

This sort of goes along with some of the other posts I've had where I mention not to assume something about someone and their battles. How I may look one way because I'm exhausted but that doesn't mean I feel argumentative, etc. Posts like having Grace because sometimes you don't see the battle a person is fighting. Some days, most days we look like any other person on the outside, but have things we are struggling with on the inside. 

The underestimate works too, because I underestimate myself. Alot. Luckily I have a husband who tells me how amazing I am and how much he respects me getting up and getting things done, children schooled, and house semi cleaned even when I don't feel like it. This helps me remember God gives me more strength than I would have on my own, and more than I know. 

But it's the talking about me, or my child and our health struggles that I want to really touch on today. 

Here's the thing, I share more than most people. I share so much that it overwhelms ppl and they don't want to get close to me because it can be too much to worry about in a new relationship. I get it. But that's who I am. When I am ready, I share. Good. Bad. Ugly. It's all who I am. And it's all for anyone to see, if they wish to come see it. 

Therefore I don't think it's too much to ask to have people come to ME for their information or updates. I don't think it's too much to ask family members to refer those asking to my blog if they want details. 

I give them. FREELY. 

I have all too often seen misinformation and horrible gossip spread because people didn't want to take the time to find out for themselves. Now, I ask you. Are these ppl REALLY the ones who care??? Are they the ones whom will spend time on their knees in prayer for me??? No. THEY ARE NOT. 

Those that won't even come to a blog, open at any time of day for their convenience to keep updated on me and would rather ask whomever is next to them and get some superficial answer and say a "bless her heart". Those are the ppl that pretend to care but, really, they really don't. It just makes them feel better about themselves for taking a moment of their precious time to ask whomever was next to them that may or may not have the accurate information. 

SHAME! 

And shame on me too, for I have been that person who didn't take the time. Who shared gossip, who shook their head in proper sadness for that person hurting....for that one moment and then asked what was for lunch. 

But I am learning from my own experience and I share with you, openly and all-too-honestly why I feel the way I feel about coming to the source. 

This is my struggle. This is my body. This is my journey. 

Is it really too much to ask ppl not to share things I haven't chosen to share yet? Or to ask ppl to guide others with their questions to me rather than say things I may or may not want shared yet? 

I don't mind ppl asking for prayers for me. Or posting my blog and asking for prayers. All I ask is that you keep it at that. The specifics can be left for me to share for it's not your journey to share with another. It's mine. 

So, yes, please. Ask for prayers if you wish. But let me share any specifics. In my own time. In my own way. 

Visual Therapy Update

It's the beginning of our Homeschool year and the ONE THING I've been really bad about this week is patching and at home therapy. I admit it. I've failed miserably this week. It's hard to figure out when to do it. I don't want him having to patch during school work because I think that will just result in a fit of fears from him. But, after school and chores they usually take a rest time and then go swimming, in which he can't wear his glasses at all. sigh. I'm going to have to make it work and set a time, even if during school...which he may not like.
Sometimes you just have to do it whether you like it or not. You cannot make every moment pleasurable and I think that's one place we fail as parents in North America. We appease our children way too much, myself included although I do have a healthy sense of why they need to learn certain lessons to help them later in life.
Even so, I still do this. What is it about motherhood that makes you want to make it easy on your kids?! We think it's protecting them when really it's inhibiting them from learning important lessons. Like Patience. Or that the world does not revolve around them. Even so much as them learning how to serve others.
No. They totally get how to BE served, but not TOO serve.
And in this. We hurt them.
How disappointing to our young men when their new lil wives will not serve them as their mommies did. It provides all too open a door for satan to sneak thoughts in such as "maybe I chose the wrong person". Expectations aren't always a good thing you know.

So here I go.
Going to make sure he get's in his two hours of patching and his At Home Therapy each day we do not do In Office Therapy.
By the way, his At Home Therapy has changed. We have stopped doing eye stretches as they say it looks good in that area now. And we do red/green glasses where he is working on tracking by doing puzzles and dot to dot paperwork. It all seems so simple really, but it's working so we continue.

And as always, he's a cool dude in any kind of glasses...

Why the gun? psssshhh you must have girls for you're not asking the right question. The right question is, when does a boy NOT have a weapon in hand?! ;)

Graves-Momma Update Aug 2012

So today I had my first Doctor appt outside of the Cherokee Nation. This was a much awaited appt. Let's do a quick recap of the last year shall we?!
June 2011-Taken off all thyroid meds. DANGER ZONE but needed for radiation. Decide to move to Oklahoma because they told me I wouldn't get approved for radiation without being here with the CN (Cherokee Nation).
Sept 1-Moved to OK, began more appropriate treatment...or so I thought.
November 2011- Got approved for Uptake and Scan pre radiation of the thyroid.
Dec 2011-Got results that uptake was abnormal and needed an ultrasound to see if I had goiters/nodules and whether they might be cancerous or not.
March 2012-yes, you read that right. In MARCH I finally got results back that yes my goiter had grown and I had also developed several nodules around the Thyroid but they were less than 1 cm therefore most likely non cancerous.
BUT!!!
By March my thyroid levels had changed so much so that if I got radiation there was a great chance it wouldn't take. I was heading hypo and gaining weight because of this.
Since then I gained 40 lbs. Just so you know. Because it's important you remember how much this is affecting me.

The Cherokee Nation healthcare was supposed to save my life. It didn't. I am thankful still. But, it REALLY didn't. Like losing all my muscle tone, gaining more weight, not getting any sleep, having no immune system, dislocating my knee, hip, and ankle amongst oh so many other issues.
However, I chose to believe that God simply chose the grass to be greener on the other side of the fence not because the greener grass was actually green..but because there was another option and hopefully the real fix.
This, please pray that this, is the fix God always had planned.

So I saw her today. The new Dr. I brought all my records (of course the only records I could actually get from the CN is patient notes and not the actual lab results as I should have gotten but this doesn't surprise me).
She was knowledgeable, patient, and listened well.
She wanted LOTS of bloodwork done, and an ultrasound done to check my goiter/nodules.
She said that, no, I'm not a candidate for radiation because my eyes pop out enough that radiation might actually make it worse and therefore she won't consider it. This is good because I have since decided that I do not want radiation as the chance of getting cancer in your stomach, intestines, or throat within 6 years after is extreme.
So that's out.
She is checking all my thyroid hormones, also for Hashimotos Disease, as well as seliac disease. These last two are possible because of all the other issues pertaining Gut that have appeared in the last year. So not going there.
She said that if the ultrasound showed any nodules over 2 cm that she would want to do a biopsy.
So. During our appt her nurse was scheduling me for an ultrasound downstairs.
I was able to go directly there after the appt. thank goodness. Radiology and Lab are in the basement of the building. Remember this. I'm going to make a point.
So the Ultrasound Tech was so friendly and did happen to tell me I had nodules over 2 cm.
This is the scary news. Still unlikely it is cancer but the Dr is going to want to do a biopsy on them.

sigh

So I wait for the blood results. And I wait for the ultrasound results and the phone call scheduling a biopsy where they will put needles in my throat while I watch.
oh joy.
After that, and given the chance to review all the paperwork I brought in the Dr will make her recommendations.

Oh yeah, the point I was going to make.

I found it ironic that the ultrasound and the Lab was in the basement. After the SIX VIALS of blood they took I waited in front of the elevator and a little voice inside me said "Nowhere to go but up".
And it hit me.
Nowhere to go but up. Please Lord PLEASE let this be truth for my life, my family, my purpose while here.

First day of school!

I *meant* to go to bed early last week. But that didn't happen.

I *meant* to get up early last week. But that didn't happen. 

I *meant* to get us used to our new time frames last week. But that didn't happen. 

I *meant* to go to bed early last night. But that didn't happen. 

I *meant* to get up earlier today and not have a late start. But that didn't happen. 

But here's what *did* happen. 

-We got donuts last night, because I knew I wouldn't if I saved it for this morning. We celebrated first morning of school with donuts. I know. Healthy start I know, be jealous. 

-Both boys were excited and curious

-At some point both boys said these words "Ok Mama I want to learn more". 

-Both showed by our extremely quick to finish schedule that they will exceed this year, and I'll most likely be buying new curriculum more than once, which means they just might do two years in one. Crazy right?! Not for homeschool kids. ;)

We *did* our homeschool schedule which is as follows: 

Answers For Kids Bible Curriculum Lesson 1, 7c's and Day 1 Creation. 

Charlie-Teaching Textbooks 3 Lesson 1

Kung Fu Roo Bob Jones Math 1 pages 3-5

Charlie Auditory Processing Help as Grammar

Kung Fu Roo Teach your child to read in 100 easy lessons, lesson 1. 

Mom-gathering info on Columbus for History tomorrow, and gather materials for our Thursday experiment (still waiting on book to get here first). 

Next is Lunch - Couscous with chicken, and veggies. 

Then Charlie has Visual Therapy at the Dr's office 

And THEN, we end our day with our first field trip to the Aquarium where we'll watch them feed the otters as well as look and learn about animals.
*Updated after we went*
Some friends joined us and they had a blast! These kiddos are so sweet and they all play very well with each other. We are blessed to know them.

I *didn't* get alone time from sending my kiddos to school like many other moms I saw this morning on facebook and I *did* get a little jealous of them I have to admit. But, now that it's supper time and I look back on our day, we really had alot of fun. I enjoyed teaching and being with them. And right now they are watching "Professor Beakman" the crazy haired scientist on netflix and can't get enough of learning.
Thank you Jesus. This is what it's all about. Being with my children, and opening their minds to learn and love it. Praise Yeshua, he has blessed our first day! I pray he blesses our year as well.

The Satan bird

For most of the summer there was a crazy bird outside our window and from 1am-6am this bird sang like it was on American Idol try outs. There was no rhythm and no rhyme to it, just one bird call after another where satan's bird would mimic every other bird it's ever heard sing.
I assume it was satan's personal bird because this bird sang all night. E.v.e.r.y. Night. For. The. Summer.
And Satan would do that, just to torture me. Therefore whether bird knows it or not, he's satan's bird in my mind.
He did sing pretty, albeit very loud and I would imagine him looking into a mirror saying how beautiful he was and listing reasons he should be God. You know. Like his owner.
Anywho.
I didn't mention bird before because quite honestly it would have looked like this

Well, I haven't heard bird in a while so I think it's safe to say bird has flown its nest. Err. Either that or the fireworks, well, worked. Hehe.
So here's to our summer bird. May you be torturing some other person who has trouble sleeping.

Raw, trembling, tearful.

So let me learn that my losses are my gain, 

To be broken is to heal

That the valley's where your power if revealed. 

Wow. 

We were on our way home from Charlie Brown's Visual therapy and listening to this song. I have to start by telling you I heard it the first time on the way to the store a week ago and I kept listening to it over and over as if I knew there was something I needed to hear. I knew it pertained to me, but it just didn't hit me hard. 

Then, we stopped today to get ice cream (I do this about every other week just to keep our spirits up about visual therapy, esp if he's been doing well). There I am, eating my ice cream and the above lyrics hit me like a tons of bricks. I almost spit out my ice cream (not something I'm likely to do I tell ya), and choked at the same time. 

Wait. What?! 

So *trembling voice* so, is this saying Father that you have broken me so much so physically in order to heal me? To heal my baggage, my past, my guilt, heal me of my own convictions I daily prosecute myself of? Is, um, is that what this means? 

Tears again as I write. 

Bu...bu...but.....I'm. *Sigh* I'm NOT worth that! 

Could it be? Could it be my heavenly father really does love this horrible person that writes this dull blog? Could it be he loves me so much to pursue healing me, even if it means breaking me?? 

I need a moment to compose myself, again. 

Is that WHY he's broken this body? 

I keep asking. I ask for a clear answer, because...well because I need one. I need it desperately. All I know is I cannot think this, listen to these lyrics without the tears. 

I...I don't know what to do or think from here. 

I'll update if God gives me clarity. 

Pray for me, that He gives an answer? 

I search his word today, more thankful for this diseased body than I was yesterday. 

Have some Grace please

Having friends with health problems is hard, especially when you are just getting to know them or don't know them that well. They are hard to invest in because we don't know what they are going thru, they are hard to get to know because conversation seems strained at times, and they are hard because we cannot relate to them and at times it's hard because we tend to lean on our own understanding of things rather than learn about the things we do not understand.
An example would be THIS post where Charlie had to explain why he wore a patch and she came back to ask if he had his eyes dialated.
Why is it hard for us to simply ask if we do not understand? To learn what we do not know? Does it take more time to listen than it does to assume something that is not true? No, it doesn't but most ppl make the excuse of being too busy to learn. REALLY?! When did we stop loving friendships and hating each other?
How much more time would it have taken that lady to say "really, what is vision therapy"? And then I could have stepped in and explained how he has some vision issues and we are doing intensive therapy to correct those issues and then bragged at well he's doing with it. I know this wouldn't have taken longer than me checking out in front of her, and it would have served a purpose of her learning something new, AND me building up his self esteem rather than deflating it as she unintentionally did.

Do you know how many of his friends ask about his glasses or his vision therapy? None. But that's just kids for you, they accept whatever is put in front of them without question. This is a good thing because they don't  assume something, they just play and listen and act like it's ok. Or sometimes new friends will ask "why are you wearing a pirate mask?"...much to the chagrin of their mothers. Mothers try to hush them but I'd rather they ask, it's OK to ask and to learn! Really, it is.
In fact I wish more ppl would ask and learn.
I look mad sometimes. Why? Many reasons
-extra weight on my face makes facial expressions difficult
-I have no eyebrows left, this makes you look mad automatically
-I have no memory, and concentration is very difficult as well. These are both side effects of my disease.
But MOSTLY..

-I'm freaking EXHAUSTED

It's hard for me to function every day. It's hard for me to play with my children. Can you imagine what learning about someone, engaging in conversation is like for me? Especially on biblical topics...mostly because I don't feel I know enough apologetics yet or even verse very well. 

Engaging in conversation does lift my spirits though. 

But it's also difficult because I have so many health problems that I'm sure ppl don't know what to say around me. They don't know if they should ask about it and they don't know if they should say anything. Plus they get tired of asking. I can be a lil needy I suppose. What sick person isn't? 

I know it's easier to be there for someone you've known all your life or most of it because you love them but guess what?! Those having problems now that you don't know well....they need love too. And I need understanding and most of all, Grace. 

I need alot of Grace. Because I'm a sinful person and I'm a sick person most days. I make mistakes and I have issues. 

Life is not about choosing people who make it easier on you. 

Life is about Listening. Learning. Loving ppl in spite of their faults.

Monotony and this is a longer tunnel than we thought

Charlie and I are starting to get frustrated with patching and therapy at home. It takes so much time, and I can tell we are growing tired of trying to remember it. We haven't complained much but I can tell...mostly because we missed 3 days last week. We were in trouble at therapy, to say the least.
But our update and checkup really was great news and we are excited about it beginning to work. It's just monotonous every day at home. We actually look forward to therapy days because we don't have to do at home work on those days. It's backwards I know.
Sometimes the journey is long, but we have faith that it will be worth it in the end.

I need this reminder as well. Waiting for my endocrinologist appt on the 22nd is just about driving me crazy. These days are the slowest they've been in a while. To say I'm discouraged at the moment is an understatement...but that's only overshadowed by the fact that it's been just about the worst summer EVER! I was sick all of June, then dislocated my knee, got a sty in my eye, got sick again, then got a tummy virus, have gained 40 lbs, now I have a really bad UTI. Yeah, I'm done with this. It's time my body cooperates and changes once and for all.

last week.

Last week was a mix of good and bad. Believe it or not the good part was getting to know new friends, and taking care of their 4-5 children for three days (5 one day, 4 the other two) and having a household of 7 children. YES! That was the good part of my week. I enjoyed it, the boys enjoyed it, we had trials, we had fussies, they made up, they played hard and exhausted themselves, and I even played barbies!
I was glad I could help my new friends out and more than willing to do so in the future as well.

The bad part was I lost a friendship. It's still all swirling in my head how it happened and seems so...petty, and juvenile. The bottom line is that we did not understand each other, and the problem is that one of us refused to try.
I don't like being seen for someone and something I'm not. I don't like someone looking at my tired facial expression and assume I'm mentally arguing, or indignant without asking what I'm feeling inside. I don't appreciate being seen for someone I am not. This is about the worst thing you can do to me, personally. Why? Well, you'd have to get to know me to find that out but it begins at childhood and the way I was treated often.
I am sad, confused, and still a bit angry over this loss. Mostly for my children. They lost two friends as well because of us adults not being able to handle our friendship accordingly. It's not fair to them, or her kids either.
Therefore I just think it's important to reiterate how I feel about friendships and our lack of Grace towards one another from THIS post.
That's really all I have to say on the subject.