Me and my issues.

Hi! I'm humbled to be writing my story for all to read. It's been a long and exhausting journey and one that not many, not even family, know the full story. I'm even going to condense it here because who wants to sit and read about my boring health issues anyway?! ;) First of all I thank you. For even giving this consideration (whether you order a shirt or not), for giving me your precious time, and for your understanding. It is the understanding people, those whom have loved me through all the ugly of this invisible disease that have made me thankful for it, even when it's hard. I've been sick most likely all my life, however it wasn't until I was 22 that the issues began to really cause a problem or make me think something was wrong. Since then my issues have compounded and snowballed one after another. Auto-immune diseases do that, you know. To make a long and boring story short let me just tell you my issues, all of them....except a few really embarrassing ones that only elderly should have to deal with. :) In no special order, because they all take on a life of their own: Graves Disease, Thyroid Eye Disease in a semi-advanced stage, Hypothyroid, 2 Tumors on my Pituitary Gland causing HypoPituitary, Severe Adrenal Failure, Addisons Disease, Bladder issues due to previous, possible Schmidt Syndrome and other Chromosomal defects, my Gut is destroyed (I no longer fully digest food), Asthma, Chronic Bronchitus, No Immune System, etc....ehhh that's most of it anyway. I have been treated for many years by many different doctors. Most do not treat by symptom but rather by following a standard protocol of the "normal ranges" in their blood tests. I have given countless pints of blood and regularly see the physicians only to be told "there's nothing else I can do" simply because their books from college state they must only follow certain protocol and to go outside that protocol and actually treat a patient would mean a risk to their practice. I don't say this out of malice, I've had some awesome Doctors, several saved my life more than once. However the way the standard medical community is taught is literally killing me slowly and has been for 35 years now. GASP! Did I just admit my age on the internet??? For more information please feel free to read about this on http://www.stopthethyroidmadness.com/. I am not alone, and I certainly am not crazy. This is my life, this is real. And if I don't do something I'm not going to get to meet my grandchildren. But don't get me wrong, God has always had my life in His hands. I am actually thankful for these diseases He's chosen for me. They have taught me so much, and I am a different person than I was even 6 years ago due to His persistence in giving me Grace time and time again. I could never have learned the things I have without these lessons and I fully believe He used something bad to teach me oh so much good. Many do not believe He works in this way, but I do. I see it in His Word where He does this  often (Job, David, etc). However, I also believe in being pro-active, and doing everything I can. I am a fighter, He made me this way and so He knew I would and continue to fight. Some days I lose. Some days I see progress, albeit this progress I speak of is mostly in my attitude. So, I'm ready to see progress in this failing mortal body He's given me. Whatever His plan for me I continue to grow, to learn, and to be thankful. If you've gotten this far I applaud you, and I humbly thank you for giving me just a little of your time. It's not easy, asking for fundraising but we are at a point where we are willing to do anything to get me well before something else arises in this snowball called my life. ~Deanna -

Update 1
09/01/2014by KeeseI am so thankful to the people that have donated and for God providing! I had a gallbladder removal last month. I had 1 stone, but it was 4 cm BIG!! The doctor said that was bigger than some people's gallbladders are! WOW! So, one of my issues (the gallbladder was actually what we thought was a bleeding ulcer) is now taken care of. My next big thing is the radiation and orbital decompression surgery on my eyes. The radiation is in Oklahoma City (2 hours away) and it's every day for 10 days. So getting to OKC and back daily or hotel expenses are a factor in why I haven't done it yet. Also the amounts adding up from gallbladder surgery and this radiation are extensive. I'm still trying to get to Houston, but it is so expensive! I almost feel like I'm having to pay tooth and nail just for the price of living, it's crazy. I am trying a naturalpath doctor this week. Who knows?! Maybe he will be the equivalent of Houston's wonderful Dr Hotze. It's worth a shot to try him while I'm waiting. I can't give up, my family deserves better. So blessed by your donations! You've given me hope!

Update 2
Updates10/08/2014by KeeseWell there is much to tell. I did not raise enough to get to Houston, but I DID find a Dr close by in Jenks that is very similar. And he is able to prescribe me medications from where he graduated his Doctorate even though he's a naturopath, which is awesome because it's the main thing I needed to find. I've seen him twice and the funds I did raise went towards the first appointment which covered his apt, 2 saliva tests and 2 bloodtests along with one supplement for Methyl B12. The total was $710! So those funds were perfect to get me in and going. What I like about him VS the Houston Dr is that I can still do all the testing needed but he goes more slowly (not in two days) so I don't need $6000 up front. It won't be cheap but at least it's not quite as much or at least not all at once. Anyway, I had a followup visit with him yesterday and found out that my adrenals are flatlined almost indicating severe adrenal fatigue. My sex hormone testing was low-low normal so both say that I am definitely hypo pituitary and indicate I have Addisons disease. From my research today it's likely due to all my symptoms that I have a genetic defect called "Schmidt Syndrome". But I will confirm that with the genetic testing he wants me to do next. My T3 (thyroid hormone) was still low and not optimal (I knew that based on symptoms) and still needs to be brought up with more meds. He added another 1/2 grain of meds daily. But with my adrenals being so low I also need to up my cortisol and he said he could triple it and I still wouldn't be in the normal range they are so low. But that's irresponsible so he's only doubling for now and we will test again in a month. Bringing the adrenals up will help my thyroid as well. One cannot function without the other. So I continue to be a work in progress but I am feeling much better and have much more energy. I know I am close to an optimal dose, I just need to get there and have to be patient. I'm thankful for this Dr and that I found him close by. I think he can help me and will work with me like no other Dr has. It sucks that he's self pay but I just have to work it out and save. I was even able to attend the fair for 9 hours last week and not crash the next day! The new genetic disorder scares me because of how my research says I will end up but I'm going to try to not focus on that and hopefully this will slow or deter that progress. -

Update 3

10/20/2014

by Keese

I am still seeing the Dr in Jenks, but it's going to take so long to get straightened out that it's frustrating. My sweet husband is working all the overtime he can in order to pay for it and while I'm so thankful that it's not all a one time immense cost as Houston is it's still great, just more spread out. For example I have 3 tests on the docket I need to take but they must be scheduled further out than I'd like in order to budget them. One is $75, one is $100, and one is $125. Then a follow up Dr appt to get results-$160. Plus the medications that average $300/month.
I'm waiting on the addisons issue, but it may be Secondary Adrenal Failure due to the tumors. The tumors, I am worried about because I keep getting these huge headaches which isn't normal for me. But I'm sure I'll have them checked again end of the year or first of next.

I'm trying to figure out getting radiation and surgery on my eyes. They hurt, every day and are getting worse. But that's extremely expensive even with insurance. We're talking an easy $6000 just for radiation alone. However I need to get them fixed as soon as I can because if not I will eventually go blind from the pressure on my optic nerve.

I am starting to feel better though and while some things like the radiation are hard to figure out, the rest I'm seeing a little light at the end of the tunnel. I think maybe I'll be good on my Thyroid meds soon and as soon as my adrenals catch up I'll feel SO much better. I just hope I can be patient enough to wait.

Back to Life...Back to reALIty

I really should start blogging again. It's therapeutic...and I'm kind of good at it. I'm not being pretentious, I'm simply saying I re-read a few of my posts today and thought I need to take my own advice and...well...it made me cry that advice. People, if I can make myself cry I should continue...right? Wait. That's not self deprecating is it? Is it?? Eh well. As usual I have good intentions and it comes out wrong. What's new?!

So here we are. SOOO many updates to mention. Let's do a short list and then I'll expand as I can.

-Fostering.
Firebird left us 5 months ago. Some days it feels like 2 weeks ago and some days it feels like a lifetime. I miss her so much! She went to an extended part of her family with 8 other children. She hadn't met them before but from what I can gather she seems to be doing ok. At least I hope and pray she is. What I know for sure is that she is right where God wants her to be...or she wouldn't be there. I don't know his plan and I don't know his reasons for taking her away but I know he has them and it's not my job to question them...although I have...I just...haven't gotten any answer. So, of course, I just need to accept that his plan is greater than mine.
We are no longer foster or adoptive parents with the Cherokee Nation. There are many reasons why but I'll boil it down to that I didn't like the way they got away with so much and didn't seem to have best interest in mind when it came to the children. I'm not alone in that though, there are many previous foster parents for them I've met that encountered the same tactics they used with us. It's not nice, suffice it to say. And to avoid any more unsubstantial threats to my family from The Cherokee Nation ICW I'll just leave it at that. Yeah. You get the point.

-Adoption.
Because of my declining health my husband has decided he does not think it's a good idea to adopt right now. I don't know if he will ever. This is an extremely painful sore spot for me so I'm just going to leave it here and keep praying he changes his mind as I continue treatment.

-Charlie Brown.
For 2 years we did 2 different types of therapy to try to treat his Strabismus and Amblyopia. One was specific to ocular therapy and trying to get and keep his eyes connected. It was $7000 which we are still paying on and it only improved him maybe halfway. At the end they simply said they'd done what they could do and he was done. Then we found out he is also SEVERELY dyslexic and began Dyslexia therapy. What was suppose to take 3 months took another year and we ended up only partially helped. Although his reading has improved dramatically. However I attribute this to him finding a love of reading as well. And I'm so proud that he does love to read. Get this, the child will not check out children's books!! The only books he is interested in are Animal books, History books, Science books, etc.  But whatever works in my opinion. He is currently fascinated with WWII and tanks.
He continues to be kind, loving, and has shown a real love of taking care of others. He's so smart and retains information like crazy.

-Kung Foo Roo.
Although he's not diagnosed yet I'm pretty sure he's got some Dyslexia and possibly some audio processing as well. I need to schedule him an apt to get his hearing checked as he's having issues with figuring out what we say and hearing us. Part of me thinks he needs to work on his listening skills and part of me wonders if there is an underlying reason. I continue to watch him though to see where we end up.
He is still funny and crazy and has no filter. He's openly honest and doesn't hold his tongue when he has a thought. I have no idea where he get's that from..ahem...moving on.

-Me.
Ugh. Where do I start?! I'll wait till the next post and post my updates from my fundraising page. I need to do another update anyway.

Frozen, another context

I'm seeing a lot of flack about the movie Frozen, so I'm going to weigh in....oh don't act surprised, you know I'd have to give my opinion sooner or later. :)

From left to right we have the Queen who has magical powers, and is scared and conflicted because she's afraid to hurt or be hurt. We have the goofy guy who is a loner and his best friend Sven the animal. Top of Sven is the snowman who is, at his core, the bond between sisters and the voice of reason they don't want to listen too. He also happens to be the most lovable character. Anna, the sister who has been hurt but ready to forgive and lonely. And the prince...who's a butthead for once in Disney history.

There. My little rendition of who is who. And I didn't even give anything away! ha!


Soooo many people are saying some really bad things about this movie. But, I just don't get it. I don't see it, and I'm more conservative than many of them so it baffles me honestly.
Here's my thought. I think maybe we are getting to a point in history where people hear what they want to hear and get offended by everything else. They see what they want to see and don't like what they don't want to see. Or they look so hard for what they want that they find it, even when it's not intended....or maybe it is and I refuse to see it only seeing what I want.

So here's what I saw, let me bring you into MY WORLD for a minute here, and as usual  my world involves all those in it and how things affect them. Keep this in mind.

I saw a movie that, for once, taught about what real love is. I saw a movie that taught loyalty, and family is actually meaningful. I saw a girl, having trouble with a really scary past watch this Queen who is troubled with a really scary past make choices to shut herself away from the world....much like my own girl's current choices. And I watched her big brown eyes as she watched this Queen struggle and fight, and eventually make a choice to love and open herself up to others while trusting herself NOT to hurt those she fears hurting the very most. This Queen, who was quite content in her isolation, chose love and chose to let go of her hurt, her fears, and her past.

People. Nothing, and I mean NOTHING is going to be as important to my girl as learning this lesson. The Queen learned to forgive herself and others. She breathed and allowed her family in to love her even though it was scary and she was afraid to lose her sister (family). She did what was right, even at the risk of hurting others. And along the way, her sister the princess, never gave up on her. She always chose the right path and loved her sister no matter what. My girl needs to know there are people in this world that will do this.

You don't know much about my girl yet...she's not really "mine" and that's why you don't know much about her. But let me tell you, this lesson was not the only one this movie showed her...but it was by far the one she needed the most at this time in her very scary life.

For these children in the system, they have scary pasts and they've done scary things. They are sinners, just like us. But they don't know they can "Let it Go" and learn to forgive and love and be loved. Most have attachment issues and they refuse to let anyone in. They are trapped within their own jail cells they've created for themselves so that the hurt is minimal and they don't risk hurting anyone with their words of truth about their past. They are scared, VERY ANGRY, and in agony. Even though they put themselves in this jail, they don't know how to let themselves out in many cases. Because what then? What if they go back to a scary place or to scary ppl that hurt? What if those they expose themselves don't love them or give up on them? What if what if what if?

This is her struggle. This is why I cannot hear that stupid song without ugly crying and praying and pleading with God that one day soon she'll "let it go".
This is why I spent several nights up way too late to make this for her birthday to put on her walls, as a daily reminder.

I'm not saying that's the ONLY lesson of this movie. But it's enough. It's enough to buy it and endure the 239753957350 times I'll have to hear that song and watch this movie.
It's enough to look at the ppl calling it all kinds of other weird things and ask...."Have you thought of another perspective outside of your own mind and what you want to see"??? yeahhh....I didn't think so.

Alrighty, enough for now. I think I need to go listen to the song and have a good ugly cry while I'm letting it go that you haven't.

What they don't tell you about being a foster parent

I'm going to preface with two things. 1-It's been a REALLY hard month, and day even. And 2 takes more time. Here, let me make it official with an : mark.
So 2:
Second you need to know that I DO NOT subscribe to the guilt ministry that it haunting local churches right now and misusing scripture for DHS's agenda. I am currently asking our church, and doing research on it so I cannot conclude all my findings but I know this. Taking care of foster care children is NOT a command, and you WILL NOT answer to God on judgment day if you do not choose this route. Wheeewww I said it, I finally got it out there in the open. Many of my friends will disagree with me, and that's ok. Some may even discount me as a friend based on that one statement, and that's not ok but it is what it is.
Like I said, I cannot defend that statement TO IT's FULLEST, yet. But here's where it starts: (see, I use that symbol when it's important)

James 1:27 (ESV)

²⁷ Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.

Ok so the basics are this: in the current foster care system where DHS (or ICW to be fair) rules in a very unGodly manner, refusing Him in EVERY way...how can you dive into being a foster parent and still keep yourself unstained from the world? Or your own children. Ahhhh and that is where my first point and distinction lies, see that last part of the verse is often left out. They only quote the orphans and widows part. Also, in this letter (and it is a letter to a certain tribe, or group of people) he's speaking specifically to the church, thus why he mentioned keeping themselves unstained. So, if my best friend within my concentric circle and church passes away and I do not help her children when I could...yeah I believe I'll answer for that. Not being a foster parent? No. I'm sorry but it's just NOT what the text says.
It is good if you're called. It can be noble if you can figure out how to stay that way within this system. It's absolutely needed yes. But it's not a sin if not.

PHHHHEEEEEWWWWWWWWWW
*Falls back in chair sighing a sigh of pure relief for finally getting that out.*

So having said that let me get back to the subject at hand. I didn't realize that foster parents play the part of the abused, the beaten FOR the child when they are in our homes.
Maybe I'm being dramatic *say it aint soooo*, maybe I can't handle it like others can. But I seriously feel like every time I get bad news, or every time I see Bio making a REALLY BAD choice, every selfish move, everytime I realize they don't actually care about these kids (once again, because you never get used to that news and it doesn't matter if you see or hear it 43543 times a week, each time still shocks and rocks you to your core), every. single. time.....I myself feel pain and heartache. No. I'm not being selfish. I'm being protective. It literally feels like I'm leaning over covering this child taking these whiplashes and beatings on my own back so that she doesn't have to feel them. I'm taking every bit of bad news and information as a scar so that she doesn't have too. She hurts too, don't get me wrong. She doesn't know what is happening nor does she understand and that is very scary in itself. Not to mention her own pain from her past, and from missing her family and friends she once knew.
But I never realized that would be a particular part of my job. I was naïve and thought I could just love and keep safe and be "a soft place to land" like so many others say right along with me. But it's so much more, and so much more painful too.

I shouldn't gripe or complain. I should take these scars and lashes willingly...like Jesus did for me. But I'm not that good, graceful, or loving.
Pray for us. We need it.

a warning to all those who enter

I had a Car Finance guy in my house this morning (don't worry, my boys were home and my husband has said this is ok, plus it was to sign 3 papers they forgot to have me sign and he was here a max of 8 minutes). I will have a caseworker in my house tomorrow afternoon.

My house is a MESS.

In Midland, TX (where looks are often more important than anything else) I would have been shunned for how messy my house is right now. You simply do not invite others in when it's a mess there. It's just not done. And it's shameful you cannot keep it up, you should (and most do) get a housecleaner if you can't, because that is better than a messy house.

 

But you know what? 

I. DON'T. CARE

 

Ok I care a little. But not much, and certainly not enough to change it...much...ok I'll proly do a teensy bit before caseworker comes but ONLY to make myself feel better.

 

But honestly I shouldn't. And honestly it doesn't matter.

GASP! How can it not matter???

 

Because this has been my week:

I've had 6 doctors appointments, next week we have 3 (one being 120 miles away)

I've held a hurting, crying child who misses her mother.

I've been in crisis learning of new steps being taken, heartbreak about to happen, and fear about what's going on in people's heads, not to mention about court and actions thereof.

I've gotten behind on schooling my boys because, let's face it, in crisis SOMETHING is often left behind...and wayyyyy too often do my own children feel the brunt of this.

Our car was dying and sputtering. We had to buy Daddy a new one.

I've had to fight credit companies because of mistakes and stupid stuff, that never seems to resolve after 6 years.

I've learned of bullying and had to address it.

I've learned of scary, dark, horrible things that make me fear the future for one of our children...and also the others as a result.

I've learned my vision is worse, my eyes popping out more getting closer to needing surgery.

I've been so dizzy I feel like I'm buzzed. All day. Not since my college years has this been "Cool" nor is it now when I cannot walk or think straight.

I've had Bleeding Ulcer issues. Again.

I've held my dog wondering if she's going to keep breathing in the midst of a severe seizure and taken her to the vet after she recovered only to learn she needs meds...TWICE a day now.

I've put off infant adoption, by my own choice. Because life is too hectic and up in the air right now. If you know my story and yearning for this you realize how devastating this alone is.

I've talked with a friend who's heartbroken because another baby was ripped from her arms and put back into a not safe environment.

I've chatted with a friend (my closest) who is so young, beautiful, and healthy but all of a sudden is having severe and scary health issues.

I've consoled a friend who is also in crisis and her body is hurting because of the stress in her household (she happens also to be a foster parent, imagine that).

I've discussed in depth what is best for our household with my husband, and all those in it. And we still have no answers and are fearful of the future.

 

There's more. I know there's more because I feel like I've been hit by a whirlwind this week. I just can't think of it all cuz of this stupid brain fog.

 

No. You might disagree and you're perfectly welcome to pay your housekeeper and cheer her on if you do, but no it does NOT matter if my house is a mess. It's lived in. It's hurt in. This house hold hurting children as they cry softly. It watches over scared children as they are influenced by others. It silently sees when the parents within are desperate for answers and don't know what to do. It holds life. And life, well it's not always pretty. So neither is our house.

 

I know. I have few friends because of my mess. I'm a mess. My family is a mess. My house is a mess. It's just a mess. And no one likes mess. They like neat pretty smiles with CAN-DO attitudes (high five in the awesomeness of our pretending everything is ok..YEAH!!).

 

But it's real. And it's raw. And sometimes we'll clean it up a bit and sometimes it'll be messy. Such is life.

 

You're welcome to come into my mess, but just know you might get dirty, cuz I'm not going to hide my mess for you.