Uncensored, unedited me!

This week I heard from the doctor that I don’t have Celiac, that I’m not gluten intolerant. WHAT!!??!! How is that possible? I gave up bread and pizza and cake and everything! Now you’re telling me that, that isn’t the answer!?! That when I’ve had horrible migraines, diarrhea, body aches, horrible gas, running to the bathroom hope I make it, etc it hasn’t been because I messed up and had gluten along the way???????????????

So what does this mean? Last night I gave it a try, because I’m already in hell why not go for the gold. I ate a breaded chicken sandwich on bread and a gluten full cookie and the world didn’t end. No headache. No 10 trips to the bathroom in one night. I still had the problems I’ve been having but it was no worse. WHAT THE HELL!!!????!!!!

You’d think I’d be happy about this, and don’t get me wrong I am. I’m not going to go full throttle because when I’ve been eating gluten free I’ve felt the healthiest I’ve ever felt, plus I like the weight I’ve lost and I don’t want to go back to BIG TAMMY :). Plus cooking has become something I excel at and love. But I’m looking forward to eating cake on occasion and when I eat out not having to freak out about what has touched what in the kitchen.

You’d think with this new revelation I’d be happy but the truth is I’m not. I thought I had THE ANSWER! I thought for the last several years that the answer was GLUTEN and if I stayed away from it I could live a happy, healthy, life. I thought that my troubles were behind me and that my change in diet could be the answer….but now they are telling me I never had the answer. That that wasn’t it.

How can that be? I lost lots of weight, and felt better with minor blips along the way where I would have all the tummy troubles but they would only last a day or so not months upon months upon months.

So the blips have been minor flare ups? And the months upon months have been actual flare ups? So you tell me, WHAT THE HELL IS WRONG WITH ME!?!

The minor blips come with diarrhea and the need to run to the bathroom; migraines; body aches, weakness, and tiredness; painful gas; and this all comes on within moments of eating. I mean I remember eating out with my friend Betsy and within a few bites of food I knew I was going to be sick for the rest of the night. I would eat and my body would feel like it ingested poison and around 2 am I’d be running to the bathroom.

The days upon days upon days of this stuff comes with morning, noon and night trips to the bathroom, multiple trips to the bathroom; painful gas, and nausea. Most of my trips to the bathroom happen in the evening but they seem to be related to the time on the clock and not when I eat. In the beginning I thought they were triggered by my eating but I noticed when I skipped a meal I was still having the same problem.

So basically I’ve been living with this for the past 10 years with no solution. I thought I had a solution but I was wrong.

You’d think I’d be happy I can eat gluten again but I’m not. I’m not happy that I don’t have an answer anymore. I’m willing to give up the foods I love, even if it’s the veggies I adore or the fruit I love (though I’m very hopeful I won’t have to give these up) to have the answer I need.

Lord, I’m seeking an answer. It doesn’t have to be today but someday soon please. What is the answer to this question? Please help the doctors that are treating me to find the right answer. I’m sorry I’m not grateful that I can eat gluten again, it just feels like I’ve lost hope again and I’m not happy. I know you are the great big GOD and can do all things, so why God am I still suffering? Healing would be awesome God but if that’s not in the plan an answer would be even better. I just want an answer. I’ve got millions of questions but this is the one problem that I need an answer for. Please give that to me God. Amen.

“Keep on pushing back the dark”

My week has been one of ups and downs for sure. Although at this moment in time the only thing I can focus on are the downs. “Whatever you do, just don’t lose heart.”

I’ve been dealing with a medical annoyance for about a month and this week it met a height that I could no longer ignore. “One million reasons why, you shouldn’t even try.”

Okay I’m gonna get gross, only so that you can for a minute be me and feel the frustration and anger and sadness that has been this week, this month, the last 10 years. “After all you’re just one heart, a single candle in the dark.”

For a month now, and 3 years back for 2 years and 6 years before that for a year and a half, I’ve been having diarrhea at least daily and usually multiple times a day after I eat. Gross I know but the facts. My stomach/bowels will speak to me after I’ve eaten, before I’ve eaten, almost all day long and all night long. To the point that people talk to me about it or ask if I’m hungry or feed me or whatever to make it stop and no it doesn’t stop and no it has no effect but I’ll let you think it does so that we’ll stop talking about it. “And there are shadows here, feeding on your fears.”

This week I was going to the bathroom like crazy, having diarrhea 20 times in one night and that was just after eating dinner. So I decided to go to the doctor. “That you don’t have what it takes–who are you to make a change.”

I went at 3:00pm this past Tuesday and laid it all out for the good doctor. I told her about my past and my missed diagnoses. One specialist said, Ulcerative Colitis. The next said they were wrong and nothing was wrong with me. I told her that I have given up the gluten completely because when I eat it I have to run to the bathroom and pray to God I make it, I get massive migraines and become lethargic the next day with great body pains. I told her my entire history with this stupid stuff and then she did what they all do she started circling the tests she wanted to perform. “But oh, oh, don’t underestimate the God you follow.”

So I walked down to the lab where they gave me the cup to pee in, the bowl to collect the poo in and the cups to put the poo in. Then I went to the bathroom and collected all the disgusting samples and it took about 15 minutes to completely collect and fill the cups. But I was determined not to take that stuff home. “The city on a hill, it should be shining still.”

Once finished with my collection I walked back to the lab and dropped my samples off. Then the nurse proceeded to collect all my blood (not really but there were a lot of viles she was filling). Then I went back to the Lab waiting room, waiting for someone to call my name. “Every sinner saved by grace, has a purpose, has a place.”

When they called my name they took me to the X-ray where I disrobed and lay on a table in those ridiculous gowns and waited. They took the X-Ray they needed and I got dressed again. “Inside the bigger plan, we might not understand.”

I should say before she sent me to the Lab to be poked and prodded she told me what she thought. She said it could be diabetes, it could be thyroid problems, it could be kidney dis-function, it could be IBS, etc, etc. I was barely listening but I remember the big 3 “thyroid, diabetes and IBS.” She said she was sending me for labs and that we would talk on Monday once she got all the Labs back. Then she sent me on my way to THE LAB. “But if we just keep walking on, we will see the kingdom come.”

I have to tell you while sitting in the Lab and while getting my X-Ray and while driving home I was FREAKING out. Sure this has happened to me before. The first time my mom was there with me, the second my good friend Vicky was there and this time I have friends in the state and all over the country I can talk to about it. But I felt truly alone and scared. So scared. “Whatever you do just don’t look back.”

I kept thinking about the times before, the diagnoses before, the guesses before and the non answers I was given. The last time I did this, after the clean colonoscopy my Doctor turned me away. She said I was fine. And that was it. She was done. I was fine having diarrhea all time. This was it she was done with me. I had no hope then and that feeling returned in full force this week. “Oh somebody needs the light you have.”

When I got home, after being released at 5:00pm, I called my mom and talked with her. I wrote a note to my prayer group and texted good friends and still I felt all alone and SCARED. “Whatever you do, just don’t lose heart.”

Wednesday I had to work from home because my problem was still a problem. The doctor called in the morning and said what the others had said, “you’re pretty healthy.” My kidney function was good, my urine was good (something no doctor has ever said to me), my blood glucose was fine so diabetes was out, my thyroid function was fine, so she was crossing items off the list. Leaving the one thing she thought it might be IBS but she was still waiting to for my poo to come back and some other tests so we would wait to talk diagnosis until Monday in her office. “Keep pushing back the dark.”

So Thursday I went to work and worked from work but came home early and it was a good thing I did. I got books from my low carbohydrates colleague and got on and read about IBS. Some of the symptoms fit but not all. The most disheartening thing is that I’ll have to change and limit my diet all over again. “Keep pushing back the dark.”

I’m disheartened, I’m scared, I’m feeling alone, I’m frustrated, I’m angry and I’m sad. I don’t have a diagnosis yet but what else makes sense. “Oh, oh don’t underestimate the God you follow.”

She did say that my X-Ray showed lots of bowel in my colon and lots of gas in my other intestine. No impaction, no nothing. “He is the light that burns inside your soul.”

So that’s where I am this Friday. I have the day off to get some stuff done in town and I’m excited for the day off but not the day to sit in my head and keep thinking about all of this. “So keep shining until the whole world knows.”

The song that is throughout my post has been in my head all week long, Pushing Back the Dark by Josh Wilson. I’ve heard it in the car each day to and from work, from the doctor, etc. I’ve heard it in my head when I’ve woken up each day. It has made me cry, it has given me hope and it has reminded me that the diagnosis is not yet here and that this doctor seems determined to give me an answer and hopefully she won’t give up until she has an answer.

That’s been my week. Ups and downs for sure. The ups were talking with my mom and her never ending encouragement. Sharing with friends who pray for me and send me hugs from DC, Texas and CA. Sharing with co-workers who give you cookbooks, share in your frustration and those that simply say, “That pretty much sucks.” My friends, family and co-workers are awesome.

“Pushing back the dark” of my downs. I’ll let you know the endgame when I do.

Reflective

Three things make me reflective: 1) engagements, 2) babies and 3) birthdays. The first two are other peoples and the last is my own.

My birthday is slowly approaching, I’ll be 33 in 38 days (if my math is correct). Friends and relatives are getting engaged, planning weddings and popping out babies. If I focus on these I’m sad. I’m 32 and very single. I’m not a fake single, those with a significant other but no commitment. Its been a year and 8 months since I’ve been on a date and before that it was 8 years, so it could be said that I handle the single life well. And I do for the most part.

I have a good job, something that keeps me busy and something I have passion about. I’m happy. I have good friends at work, in KC and spread all over the world. I have a loving family, a roof over my head and a working vehicle. I have great hobbies and outlets for my creativity and am happy.

But I do have this part of my life that sometimes makes me sad. I don’t really like being single. I know that the person for me is out there but I do wonder if I will ever meet him.

One of my friends on Facebook posted a cryptic message about God saying no or not yet about something important to her. She asked for people to tell her stories when God was faithful. I started to think about my employment journey: being fired, being unemployed for so long, and then getting a job and moving. I waited so long for a job and then God put me into a job that has taught me so much. God was faithful and his plan was perfect. I need to remember these things when I start to doubt God in the area of romantic love, weddings and babies.

Sometimes being reflective is helpful. God’s timing is perfect, perhaps I can remember that when loneliness knocks again…..

Our God

Do you ever have one of those days where you wake up singing a song? This morning I woke with Our God by Chris Tomlin, literally coming out of my mouth. It was absolutely awesome. 

Finding a church in a new town has been difficult because I want something particular and I’m not finding it. I’m looking for great worship and community and I’m not finding it. I’m become hardened through this process and getting the motivation to go to church is difficult. I even feel like I’m losing part of myself. My faith is as strong as ever because I’m becoming a person who is immersed in God daily. 

Every morning I get up, get dressed and greet the sun coming up over the horizon. I get to see the sunrise on my way to work every day and I am awed at the beauty and glory of God. I pray on my way to work and I worship right along with K-LOVE. When inevitably some person cuts me off or does something idiotic, after my heart slows down, I thank God for giving me good brakes and making me an defensive driver. During the day I’ll thank God or pray for one of my co-workers or the individuals I work with. Then on the way home it’s more of God’s amazing creation. I love the city, but I am beginning to love rural Missouri as well. The open fields and glorious animals are awesome to see. There is a great Park on my drive and in Fall it was glorious, now it’s a little dead but I cannot wait to see what it looks like in spring. God greets me daily and I speak with him and marvel at his glory and beauty and we are close. 

But I still miss church. Sunday mornings I get up at a decent time and meet God in devotionals and Christian music. God still speaks to me but I know I’m missing out by worshiping in my apartment by myself and not in community with others. 

But I also feel like this is our time together to get me ready to go back out there and search for a church. God knows my heart is hardened and that I need this time to rejuvenate, so that when I go back out there my heart will be open to hear what and where God wants me. 

A few months back he gave one of his children a message for me, “there is someone, somewhere that is ready and waiting for your help. There is a church that needs you and is ready for your help.” I have to find this church, I know that but I also know that this isn’t the time, but that time is getting closer, because a month ago I didn’t remember this prophecy. But slowly God has been reminding me of my passion and making it evident that even though I have a job, I need to pursue my passion because God gave that to me. He is cultivating me to be the person that can help others, he’s getting me ready.

So even though I sometimes feel guilty, I know that right now, it’s okay. I’ll be back when I’m ready. For now I’m going to enjoy my time with Our God. 

I’m soon going to get back to my morning devotional but before I do, I wanted to share just a few lines from the song I woke up singing this morning. I hope you’ll see in it what I did, that this time I’m taking is important. If not I hope you’ll see a message for yourself. God often speaks to us through songs, books, and other people. I hope you have a great Sunday and that you spend a little time getting a little closer to God.

“Into the darkness you shine, out of the ashes we rise……And if our God is for us, who could ever stop us”

2013 What a year!?!

I don’t know about you but I get really reflective at the beginning of a new year. I look back and see what happened in the previous year and where I am today. 

The most exciting thing of 2013 was moving to Missouri and getting a job. 2 significant things that changed things for me late in the year. At the end of January I will reach my 90 days at work. An achievement to be sure. I still really like my job. There are days when I feel like I am in in my stride and know what I am doing and then days where I still have no clue what to do. It’s very interesting. 

2013 Also brought changes to the family. One of the saddest was the loss of Grandma Shirley. I spent most of today watching The Ghost Whisperer which is a good show but I don’t recommend it if you have recently lost someone, talk about depressing. I cried at the end of every episode and am crying now deeply feeling the loss of a woman I loved wholeheartedly. No grandmas left :(……

2013 Brought other changes to the family like heartache and complete disbelief. I mean you think you know someone (sorry to be cryptic but it’s not my story to tell, nor did it really happen to me….it just happened to a great woman and her awesome kids that I love and the betrayal is still shocking to my core…but again not my story so that will be the last I say about it.).

2013 Also brought great joy in the form of my younger sister getting married. It was a great celebration and Jeff was a  great addition to the family and I thoroughly enjoyed his company this Christmas. 

I finished my 2nd Masters but there was hold up with people dropping the ball and I’m still waiting to receive my degree. Very annoying but luckily it didn’t hold up me getting my job so it’s all good. 

My health was pretty good. I mean I wasn’t hospitalized that year which is a feat in itself. There were no surgeries and the only time I was in the ER was for work :). That’s pretty good. I did have some gluten issues but that was only when I wasn’t supremely careful which even now I make a mistake and only know it after the fact…its annoying but luckily infrequent. I do have migraines pretty frequently which I still blame on that stupid accident and I still pass the occasional kidney stone and have the occasional kidney infection but nothing too serious (its all relative).

Life in 2013 had ups and downs but I still have my health and a car that works, a roof over my head and a family that I love. I’m still single and I live alone and I don’t know my neighbors but there’s always next year, right? 

I hope your year had more ups than downs as well and that this year will bring new goals reached, new joys surpassed, and new adventures. :)

I love the Christmas season, it’s a time of hanging out, seeing family and my favorite playing board games! What I don’t love about Christmas is Christmas Hymns and Church services before Christmas. I cannot stand them, I cannot stand them so much that I actually skip church during the month of December and listen to old pod-casts and my Christian music favorites. Don’t worry, I feel guilty about this but I ask for God’s forgiveness and move on. I’ll be back in the New Year when sermons return to relate-able topics and move past the virgin, the inn, and the newborn babe. I just don’t know how churches stretch this for so long. Seriously?

I know I’m hard on Pastors and churches at this time of year, mainly because I’ve been in the church since before I came out of the womb and sitting in a pew for 32 years listening to the same boring music and the same sermons about the baby Jesus is a bit much for me. Can’t we move beyond it? I know I could try to get beyond my bah-humbug church feelings and show up on a Sunday morning ready to worship but the truth is, once that first hymn is sung after Thanksgiving it’s over for me. I’m annoyed and I bring that to the service. The only service I don’t mind singing Christmas music for is Christmas Eve. Until then I can handle the occasional Christmas song on the radio but once they play 2 in a row I’m onto the next station.

I know this is crazy and that Jesus had to be born this way so that he could die later that way. I get it. I know the theology, I know the Scripture stories. I can tell you everything you need to know about the baby Jesus and his parents and the angels that came and I can sing you every verse of the favorite hymns over and over again without looking at the words. I want something fresh at Christmas, not retired old sermons that I could repeat for you, year after year. I want something new, and since I know I’m not going to get that at church, this close to Christmas I stay at home and keep my bah-humbug ways to myself and listen to podcasts of previous sermons until Christmas Eve and then I am full on Christmas spirit and ready to hear all about the baby boy that saves us.

Until then, you’ll find me home on a Sunday morning listening to Christian music and old sermons. And trust me, you wouldn’t want me in your church during this time of year, I’m much more critical than any other time :).

My new Job

Ever since I got my new job everyone has been asking if I like it or not and I realized that I haven’t shared much about it. Some of that has to do with fear, fear of losing a job I like and some of that has to do with HIPPA and sharing just enough but not too much.

So let’s start with the fear. My last job was ridiculous, lots of pressure for no reason. Sure students taking tests are important but not that important. This job is really important. I’m advocating for people that need help advocating for themselves, I’m part of the checks and balances system that makes sure that they are being treated like people and that they are safe, have comfort, are healthy and have some security. My job is important and I really like doing it and I don’t want to lose it. I’m still in that 90 day period which was when I got fired from my old job. The first 30 days of this job I was on edge, because I made myself that way. No one else did that. I did it to myself. My boss is very nice and she keeps reassuring me at every turn. I’ve settled a little bit because I’m learning the ropes and things are making sense and my case load is starting to grow. Plus my co-workers allow for an atmosphere that allows you  to ask questions and to learn more and more as you go. I love that.

HIPPA is a system of importance but it makes sharing things about my job kind of ridiculous but I can give you some generalities without any specifics :). Most of the time I work in an office with right now 13 on my case load with an eventuality of possibly 30. I make sure that all the paperwork is done for Medicaid, Medicare, and DMH (Department of Mental Health). I also check on my people and go and visit them throughout the year. The frequency of my visits depends on each individual’s personal plan. I visit them in their home, at their work, or at an activity center. I visit with them to make sure that they: are safe, are comfortable, have security (has more to do with money than with safety) and that their health needs are being met.

The people on my caseload are awesome. And they are PEOPLE! They are not their disability. How we talk about people matters.

My office is actually in the same building as the Sheltered Workshop which gives jobs to individuals that can work and choose to do that in an atmosphere that is built for them. Some work in the job prep section that teaches them how to do the job. Some work on finish work like making tables for those in the workshop or making things to be sold in craft shows. Some work in the section that does all the recycling. They work hard and they make a wage. The finishing area is where the ice machine is located so I see the individuals that work in there more often than those that work out in the recycling center. I talk with them every day and they tell me about what they are working on with such pride.  It’s awesome and they look forward to seeing me everyday. It really is nice.

I like my job. I understand it’s importance. I have a 2nd cousin named Brianna who has Sturge-Weber. She had a Hemispherectomy a few years ago and it really helped her because she was able to learn where previously that was not a possibility and it stopped her seizures. I love her. She loves to do all the fun things: watch Disney movies, color, and play with animals and kids. She’s fun. She’s 18 or so (sorry I can’t remember) but functions more like a 12 year old. In the days of the Habilitation Centers she would have been dropped off at the front gate of a large facility and never picked up again.

There is a Habilitation Center in the town of Marshall, where I work, and it saddens me. Luckily it is no longer used as a habilitation center and it is slowly closing it’s doors. It has a long history that saddens me, people simply didn’t know what to do with people with disabilities but that is not how we treat people and they are learning that there are better ways to treat individuals.

I’m really glad that the life of the Habilitation Center is not the life for Brianna and I’m really glad that I look out for people and make sure that it is never again. I love that individuals are given every freedom that they can possibly have. Some live on their own in apartments, or in their own homes. Some live with other people in group homes, like having house mates. And some simply cannot live on their own and need full time care and provided that in the least restrictive environment as possible. We work to do the best for each individual and we do what is best for them based on their needs.

I really like my job and I’m hoping to do a good job and keep it. So far, so good. This week we are hosting a Winter Ball and it should be a lot of fun.

Here is a photo of the old Habilitation Center (remember these people were just housed and were not allowed to do really anything, they lived and died on this land). 

Here’s a link to an old article that explains the closing down of Habilitation Centers: article

So that’s my job. I don’t provide services but I make sure that people are receiving the services that they need so that they can live a full quality life.

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