How are you doing?

I have to tell you I spend a lot of time on Facebook.. My illness leaves me exhausted and sometimes it's the only way I get any social interaction and I maintain a connection with my best friends scattered all over through Facebook. Every so often, Facebook changes everything about their website without telling you and it annoys a lot of people, but I enjoy finding the little things. One thing that I've noticed is my "update status" text box no longer says "What's on your mind?" it asks "How are you doing?" I chuckle thinking that would make everyone's status "oh, fine" because most times when people ask you  "How are you?" they are just issuing a pleasantry and not actually interested in your well being. As I've journeyed through illness and the depression in can cause, I have a few people that will ask me this and I know they'd likely punch me if I said "oh fine" then I have a couple of doctors in my life that when they *knock knock* as they are walking in and say "How are you?" and my first reaction is to respond socially and say "I'm alright, how are you?" .....then I go into a rant about how horrible I feel.

So, how am I doing?

In a lot of ways, I'm doing okay. I generally don't like the holiday season because I don't have any contact with the majority of my family and for my sanity and my health, it's better that way. I can't say I don't miss having my own family, but I don't miss the people that were in my family... I miss having my own mom but not my mother... I know this all sounds very sad, but..... it is.

I'm struggling while I fight doctor after doctor about what's wrong with me. I KNOW there is something causing all of this fatigue and I would like to get to treating it so that I can participate in life. My joints hurt to the point that I can't walk. I fall down the stairs randomly. I can't pick up my children. My head hurts like crazy.

I want off this crazy train!

Christmas Mourning

Our pastor at church mentioned that a lot of people would be experiencing Christmas differently this year. The parents of those 20 children from CT and many others within our church who had recently lost family members. Christmas would never be the same for these people.

I couldn't help but think how each Christmas has been different these past years...

2007, I was in my first month of sobriety and separated from my family emotionally so I spent my Thanksgiving and Christmas this year with my family in the 12 step program and moved into a sober living house with 6 other women a few days later.

2008, We lived in a trailer in Oklahoma City, Jake worked construction and we were barely making it. I spent the whole year pregnant bc we were pregnant in Jan and lost the baby in March and I was pregnant with Maddox that April. Maddox was born 5 days before Christmas at 38 weeks and jaundice, so we fortunately got to bring the billi-lights home but in order to spend Christmas with Jake's family we had to have the lights delivered to my MIL's house and home health care came and stabbed his poor lil foot everyday, by Christmas afternoon (after a scare of almost having to go back to the hospital) he was released and I could hold him as much as I wanted.

2009, Jake enlisted in the Army and left in January, he came home in June but we were able to visit him some at Ft Sill. We were pregnant again in April when Maddox was 4 months old and Avery was born 9 days before Christmas in Kansas and didn't come home until Dec 29th. We caught Maddox's first birthday when we came home to shower and change. Avery was in the hospital over Christmas and Jake's family brought Christmas to us after Avery got home. She had a lot of scares of going to a higher level NICU but we got to stay close to home and could go back and forth between Avery and Maddox. I had some complications with my post partum healing and almost got myself put back in the hospital but again, we were fortunate and I could stay with Avery.

2010, I was diagnosed with a Chiari Malformation the previous September and we were told Jake was deploying in November, so we post-poned my surgery. We moved on post at Fort Riley and went home to Oklahoma for Christmas. I was in a lot of pain and I don't honestly remember a lot of this year.

2011, I had surgery in Feb and Jake deployed in June, before his birthday. We found out in October that Jake would be part of the pull out from Iraq in December. The kids and I had Chicken Taco Chili for Thanksgiving and Jake came home on December 8th. I had been feeling really bad since September but we still went home for Christmas and I don't remember anything else about this year.

2012. We spent the first part of this year with lots of health problems. I couldn't walk or take myself to the bathroom during the first of the year. I went to the hospital every few weeks and couldn't hardly do anything for myself. We moved to Colorado in June and I have felt a bit better. Jake and I are both in college and the kids are in daycare, this gives me more time for self care and school is a good distraction/motivation to overcome my health issues or at least not be as depressed. I passed 17 hours (that's 5 classes) this semester but will only be taking 2 next semester. We went to a friends house for Thanksgiving and will be staying here in Colorado for Christmas, my health, our finances and Jake taking a class over the break will keep us here and I'm none too upset about that. Maddox is 4 on Weds and Avery turned 3 on Saturday.

 I had a bunch of other things to say but I'm a bit overwhelmed right now, soooooo, those are the changes we've had over the years.... I have to say that this time of year brings a different kind of sadness to my heart. I mourn over a family dynamic I've never had, I wish and want for many things that I cannot change to be different. I find more and more things to be difficult and my acceptance grows but not without resistance. So that's it in a nutshell... Thank you and goodnight...

Facing Mortality

Well, I started writing this blog this morning and intentionally erased it all to start over. I began with a very emotional account of facing mortality and how my husband is in the military and I have reconciled many times with the fact that our last kiss before deployment could be our last. I don't dwell on this, but I'm conscious of the fact.

I had to face my mortality when I was diagnosed with the Chiari Malformation and going into surgery to remove a portion of my skull and 2 vertebra that it could have had a lasting effect on my ability to live life the way I had been, or result in complications that could have killed me.

After Jake went to Iraq last year, just 4 months after my surgery, I expected to feel run down having to do everything myself. No surprise that I had a hard time finding my niche.

After about 4 months of struggling I went to the doctor because I didn't feel like I was improving, I felt like I was getting worse. I researched my symptoms and asked for some blood tests including an ANA w/CBC. My ANA happened to be extremely high and from my research I fit the Lupus diagnosis pretty perfectly. I was referred to a Rheumatologist in Topeka and he diagnosed me with Sjogren's Syndrome and refused Lupus.

He was very distant and quick to leave the room, so I went to find a new Rheumatologist with better bedside manner and ended up in Abilene. His practice was very slow to actually get to see the actual doctor and I ended up really frustrated with him since I was put on steroids and not followed and they kept telling me my blood levels were "normal" when they weren't (I saw the results)

So we moved to Colorado and I ended up (total God thing) with a very dry but totally awesome Rheumatologist who took a while to get the appointment but I followed up 2 weeks after my appointment and now it's just a week between appointments because he seems to notice that I've got a few problems.

So, the big news I suppose is.....

Can't say I don't have a sense of humor okay?

I have always thought it was what I had but no one else thought so and treated me like I was clinically insane, literally. In the last 9 months I've been on 5 different anti-depressants which left my emotions in either zombie or hulk stage, never level.

So with that, I'll be starting an IV infusion medication in the next couple of weeks, then 2 weeks after that, 2 weeks after that, and then every 4 weeks after that. I could go more or less depending on my tolerance and disease response to the medication. I am taking more steroid and added a couple of other medications to treat the Sjogren's symptoms including a pill and an eye drop.

Jake was working in the S1 shop on Carson before he out-processed to go to ROTC and worked with a female soldier who's sister had Lupus and passed away from complications, so here is my mortality staring me in the face.....again.

I know my heart and kidneys have been affected, I have a swollen lymph node in my neck and my muscles are much weaker than they should be. I have a lot of pain in my joints... wrists, fingers, jaw, elbow, shoulders, hip, knees, back, neck, or really I guess I should have listed the joints that haven't been affected that list is shorter.

The IV infusion will be much like Chemo, a lot of the same side effects, only with this one, my risk for cancer is higher because it will break my immune system down to give my attacked organs a chance to heal. I'll be more susceptible to infections and will likely lose my hair (good thing I don't have far to go!)

I have no intention of withdrawing from school or failing.

I have to restart my heart monitor on 07Sept and I will find out a lot of blood work that day also. I have many other doctor's appointments, 5 I can think off the top of my head in that 2 week span.



Our life will change quite a bit in the next few weeks with the turn in medical things. I have a couple of consultations for a hysterectomy and breast reduction to take some of that stress off my body. Jake has had a vasectomy because we are certain that we do not ever want to have another biological child. I have zero desire, maybe even negative desire to ever be pregnant again, as long as I live. I'm quite paranoid about not being wholly protected myself and with my history of abnormal paps and various biopsies that I've had to have, I don't want to risk the cervical or ovarian cancer, so I'd rather just evict those organs completely. If I were to get pregnant while on a few of these medications it would be very detrimental to myself and the child so I'd rather just not play with fire.

I have to say that when I first heard the words at the doctor, I was pretty happy. I felt a victory. I advocated for myself, I didn't back down and even though it took a year, I found someone who would listen and look at the big picture.

I'm so happy to be in Colorado. I am in awe of the beauty of the area, the gifts that God has given me through some bbbbbbeautiful snapshots with the sunset, the moon in the clouds, haze in the mountains.

Please hear this song and know that while I may get nervous, I am not afraid. 

10 years ago...

I dropped out of high school.

I lived in an adolescent facility off and on for a few years and had a slight altercation with the summer school teacher when I returned to my home town full time, after which I was asked to not return to summer school. The last year of school I completed was 8th grade. I passed a good majority of my 9th grade year, I successfully scored some Freshman and Sophomore credits but nothing as a Junior and I dropped out the year before my Kindergarten class went to their Senior year. I've got like 9 or 12 completed college classes that I took right after I dropped out. Intro to Psych and Sociology, Marriage and Family and Behavioral Psychology, just because I thought they were interested and didn't involve Math.

...but it's been 10 years. I've had skull removed, children added, among other stresses that have lowered my self esteem or given me anxiety about class tomorrow.

I start my week first class, at noon.... MATH.. UGH. Luckily if I never go beyond an Associate then this will be the only Math class I take. I have ASL after that and on Tuesday/Thurs I have Cultural Anthropology and English until October then Computer Literacy will come in to finish the semester.

I'm pretty anxious. I haven't had an appetite and I'm not sure I'll be able to sleep a wink tonight. Respite Caregiver comes tomorrow, so the anxiety will be less with the help getting around but still there. *sigh*

Your prayers are appreciated, and if you're not the praying type, some positive lovely vibes in my direction are welcome too :)

On your mark.... 1......2......3......

GO!

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."
Phil 4:6 NLT

Thank You Lord for this opportunity to go to school!! Please bring me Your PEACE that passes understanding so that I will focus and show the world what a masterpiece You created!!

A Little Backstory

Well, I sure didn't get the introductory post put up like I thought I would. I just don't know where to start. SO, I'll just wing it and see where it goes. 

My name is Abby, it's not short for Abigail, but we already covered that, I'm Abbarilla Hope Kuchar (my biological father) Lord (my adopted father) Gamble (my hateful mistake of a 1st marriage) Webster (my knight in shining armor that fights me for me) People ask me all the time "Where did that name come from?" All I know about the name is my Mother's Father's Mother's name was Ella Abbarilla (yes that rhymes) so my Great-Grandmother. My cousin Leah has told me that it was actually present in five out of seven generations, hopefully when her Dad (my Mother's Brother) gets done with his research I'll know more about who I am. 

I'm pretty sure if you're reading this, you probably know me fairly well, but in case you don't, I'll give you a little low-down. I have to warn you, after these many years, I'm not afraid of my details, I'm not ashamed of my story and I'm quite cut and dry about it. There are some black and white details, nothing is described but it may upset you, there is your warning.

I was born November 4, 1984 to a woman named Arlene and a man named Robert. I am 1/4 Czech and a 1/4 Polish and the rest is just English I suppose, I don't actually know. I suppose that's another question for the genealogy Uncle. My parents were divorced when I was 5 after it became known that my Biological Father was in fact a child molester. We lived in Yukon Oklahoma for most of my life, but we lived all over town. I went to 2 different Elementary Schools, 2 different Middle Schools and I went to the only High School in town when I wasn't living in an Behavioral Adolescent Facility in Enid. My Mother got remarried at my request (yes, you read that right) and he turned out to be a bit of a child molester too, although he did apologize and said that it was a "lapse in judgement" I couldn't very well bring myself to having them in my life anymore and have not had contact with them for quite some time now.  I'll tell you that those were just the BIG bullet points, there were many many other things that happened through my formidable years including a lot of drinking, smoking, drugs, misusing my body in many ways and being victimized over and over because of the choices I made with my life. I dropped out of High School after being kicked out of Summer School. I wouldn't have graduated until I was over 20 since I wasn't allowed to attend Summer School in my school district, which was unacceptable so I dropped in 2002, although I had only completed 9th grade with a couple of miscellaneous credits that a couple of really awesome teachers fought for on my behalf (quick shout out to Mrs. Mollet and Mr. Colley at YHS! BEST TEACHERS EVER, the only people for those years that EVER believed I was worth anything) I got my GED the same day or the day after I dropped out and scored a 20 on my ACT. Then I made a huge mistake and attempted college at 17 years old, with no support. I failed and in September 2003, I joined the Army (Nat'l Guard because Active Duty wasn't accepting GEDs) and I spent the next year and half deploying guard units to Iraq and left for BCT 17Mar03, where I was during the United States invasion of Iraq and PFC Jessica Lynch was captured and I had one of her Drill SGTs. My mother had surgery for a Chiari Malformation and other complications so I came home from training....on the day my unit graduated. I came home and didn't get along with my Mother very well, so I moved to "the city" and got into a lot of trouble over the next few years in really hateful relationships but we'll leave that at that. 

So, that is the past that has made me who I am today. I don't regret any of it, although I wish I didn't have quite so many traumatic experiences, but without all of these things, I wouldn't know how strong I am. I wouldn't know the God I know, the way I know Him. 

My "present" which I consider the last 5 years.

After all of that I eventually moved into a sober living house and met a really nice guy. He moved a TV for me and cried when we broke up for 12 hours. We got married in April 08 after losing a baby in March 08, had a baby in Dec 08, he went to BCT Jan 09, we got pregnant in April 09, he graduated AIT June 09, moved to Kansas in July 09, had another baby in Dec 09, we moved in July 2010 to another town in Kansas, I was diagnosed with a Chiari Malformation in Sept 2010, I had surgery to remove a portion of my skull and vertebra in Feb 2011, we started a deployment in June 2011, I started having auto-immune issues in Sept 2011, we had R&R in Oct 2011 and he returned in Dec 2011, we got orders to move to Colorado and moved here in June 2012 (this is our 7th house to live in together in 4 1/2 years) and now my husband is going to ROTC for the next 2 years and I'm finally going back to college starting Monday to be an ASL interpreter. 

I'm scared to death. I am scared that I am not smart enough. I'm scared that success in anything makes me quit before I finish. 

I have NEVER graduated from anything in my whole life (except pre-school, I've seen the VHS) 


There ya have it. Me in a nutshell. Although this does not really mean you know me by any means... You have to experience my outlook on things in real life to fully appreciate who I am. My words typed flatly on the screen without my emotion and actions don't really convey my true self. So please, don't judge me by what you've read here without really getting to know me first.

I will leave you with an excerpt from my devotional that I particularly loved this week:

As we sail through our days--particularly those of pain and suffering--we need an anchor of hope to keep us from drifting into wrong ideas and beliefs. Our lives get quite choppy at times and it is easy to slip away and lose hope. Our faith is the chain which secures us to the anchor of hope in Jesus. And that anchor of hope in Christ will not fail us. His pr

omises are hooked deep into God’s eternal plan.

Many of our days may be overcast or stormy. It can be tempting to pull up anchor and allow ourselves to drift away. But placing our hope in who we are and what we have in Christ will keep us anchored securely until we reach the shores of eternity.
“We have this hope as an anchor for the soul, firm and secure” (Hebrews 6:19)

Vote for Me!!!

Hello friends,

I know that this isn't the best way to start our relationship, but I'm starting school on 27Aug and I took a chance and entered a contest fr a gift card to buy new clothes. I'm still wearing clothes from high school, I don't have many "nice" clothes and just really wanted the opportunity to tell a very abbreviated version of my story.

I'm winning but the contest isn't over until 31Aug and the winners are announced 07Sept.

Will you vote for me?? You can vote everyday!! You can share with your friends too!!

Thank You!!



Votes:

8/12 : 10 and losing by 9!
8/13 : only one vote behind but I didn't write it down
8/14 : pretty sure I started winning this day but I didn't write it down
8/15 : 78
8/16 : 96
8/17 : 106!
8/18 : 120
8/19 : 128
8/20 : 138

Actually it's Abbarilla

That's right, I know, you've never met anyone with that name.

Hi. Let me be your Abbarilla.

This blog is going to be a sort of introduction of who I am. It will probably be a mixture of stories from different seasons of life, some things you may know, some things you may not know. Hopefully the things you read here will explain aspects of my personality.

Now to think about my first blog....

Jeremiah 29:11

New International Version (NIV)

              For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.