Monday, October 20, 2014

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.