God called me to be a college drop out.

Remember that one time Kojie’s won sing song two years in a row… I do!! 😁Every time I get to visit Abilene I leave feeling so loved and my face hurting from all the smiling lol  I never got to graduate, I accumulated a lot of debt and will probably never be a traditional contributor to society in the workforce. God didn’t send me to college to get a degree, he sent me there to prepare me for what was to come. To build a community that would nourish me during my loneliest Times. He sent me to anatomy and physiology classes so I could learn the medical jargon needed to understand the hundreds of doctors I would be seeing in the next few years. Every single class I took i can look back and see how it is helping me now. I went to college thinking it was for the purpose of a degree but the classes were preparation for a different kind of career. A career following Jesus often doesn’t look conventional and not always what the world views as “successful”.

Matthew 6;19-20

19: Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal:

20: But lay up for yourselves treasures in heaven, where neither moth nor

rust doth corrupt, and where thieves do not break through nor steal.

It’s easy to value what the world views as success. listen to God’s call, even when it’s uncomfortable, when it seems irrational or irresponsible.

The birthday I was never supposed to have. 24, the year we all thought I would never turn. You almost took me home late last summer. You sent your angels almost nightly to comfort me, to rub my feet, to sit on the edge of the bed and bring me your peace that passes all understanding. I was caught between your world and mine, you would call my name in the night like you called Samuel, I answered but you did not bring me home. Thank you for the year I should have never had. A year of marriage, a year of experiences, of memories. I acknowledge how you have blessed me, how every day I’m a walking miracle but Lord have mercy on me. My soul wants to stay but my body hurts. In every way I ache down through my bones and out my heart, hear my cry, answer my call for relief, for mercy. You say you won’t give me more than I can handle and Lord I believe you but the weight is heavy and I’ve grown so very thin and weak. Strengthen my mind, strengthen my heart (and ummm body would be great too). Prepare me for your plans, your GOOD and PERFECT plans.

Dear YOU.

We rally against animal cruelty, we are outraged by the treatment of our poultry, but where is the righteous anger for those of us that are punished for having an illness we have no control over? If the suffering from my illnesses weren’t punishment enough YOU (doctors) are here to bring me to my knees. I am confusing, strange, difficult, a nussance. I challenge your god complex and you punish me for it. Because your prescription pad won’t make me vanish you make me disappear in your own ways. “She’s lying, she’s crazy, do you really have that? Where are the records? Your dying? Where’s the diagnosis for that?

You use that pen in your pocket and write me off. The decisions you make in the day leave me agonizing sleepless nights, you don’t loose a wink over me. Why should you? I don’t exist remember? My suffering isn’t valid, I’m not valid. My diagnosis is a stranger to you, you won’t answer his texts, you won’t return his calls. If you did,  than I am but since you don’t, I am not.

Wishing just one of YOU had Compassion, righteous anger, a Desiree to improve my quality of life. Your the only ones who can help ease my suffering. Don’t let me die alone. Fight for me. Someone. Anyone.

On our first wedding Anniversary.

0c38edaf-2592-41e8-a847-9b391e3c83cbOur one year anniversary was yesterday! Since I sleep until Jordan gets off work I didn’t have anytime to post about it, we were too busy In the moment, and I wouldn’t have it any other way. Social media can always wait.  The day we said our vows January 14th 2018 I vividly remember wanting to find some way to comfort you as you struggled through the words “in sickness and in health till death do us part.” We had already been through so much but we were naive to the reality that in only 3 short months I would run out of treatment options and become a terminal hospice patient with a prognosis of 6 months or less. The vows become more real to us every day, but so does our love. We’ve learned not to count down the days or worry about time, I’ve been blessed with much more than we expected and just to be able to celebrate this anniversary is a miracle in itself. So on Monday night January 14th 2019 when I woke up around 6pm, my sweet husband carried my oxygen machine to the living room and we ordered a feast from cheese cake factory and watched some great movies. We laughed and snuggled and when it came time for bed, he held all 93lbs of me and there was silence as he shed a few tears, tears of live, tears of relief, tears of thankfulness to be able to celebrate a year of marriage is truly a miracle. Thank you God for giving me Jordan. my best friend, my husband, the love of my life, my for better or for worse, my in sickness and in health. Till death do us part. 

If tomorrow comes…

F93482A8-35FC-4A63-9929-FA29BAE4C4D0.jpegAs a kid we have all these ideas of how life should go… like growing up and getting a job, getting married having a few kids…growing old, becoming a grandparent and then eventually when your life has been long and full it ends. We expect these things, we take them for granted. For example when a new baby is born it’s a miracle a blessing, something we are gifted with not entitled to and the gift doesn’t end after the birth, the gift is renewed with each morning we are blessed to have. 

James 4:13

“Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit”— yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, “If the Lord wills, we will live and do this or that.” As it is, you boast in your arrogance. 

Basically all I’m saying is each day is a gift, we are not entitled to tomorrow. So be happy today, live today, have hope have faith today. So if tomorrow comes (even if it’s a Monday) before you grumble about the early morning. start it with a prayer of thankfulness and then maybe a cup of coffee. God is good and life is a blessing not a privilege. I’ve been blessed with more time than we ever expected, so for each day I will be grateful.

Let the hunger games begin.

Trusting God means I have to keep my focus on Him, I have to look to him. My church in Abilene would always emphasis “kingdom living” or living for the kingdom; living with the mindset that Gods kingdom comes first and keeping your focus on God at all times. This is the only way I have found peace through my worsening circumstances. I do not belong to this world. I was sent to earth with a purpose and a plan to fulfill, when I fulfill it God will call me home. So basically if I win and beat everyone else to fulfilling their purpose I get to go home first! This is where I have to keep bringing my mind to, Gods purpose, Gods will, that needs to be my focus to get through this.

That being said this is my life update.
Things may change after March 6th when I see my GI doctor or maybe stem cells will change the circumstances, but as of now this is my situation.

The hospital took me off TPN and sent me home to starve to death.

 

Tpn has given me some of my best and hardest moments. My hardest being my nine rounds of sepsis and skirting death on my birthday this year with septic shock. My best has been getting married and spending time with family and friends.
This is a year that I know I would not have had without TPN. February 23rd of last year I was laying in a hospital bed, 85lbs, my liver failing, my kidneys bleeding, my blood sugar tanking and fighting severe malnutrition. Tpn saved my life. Tpn gave me an extra year to live but it made it made me want 5. My quality of life increased so much I was able to successfully start a business, travel, move out on my own… when before it was a challenge just to get out of the house for more than an hour. I’m heart broken to be losing TPN. I’m heartbroken to watch the weight drop on the scale. I’m dreading loosing my independence and my energy. To starve to death is an awful way to go, and it is unkind and inhumane. I already feel the affects of little nutrition after a week. My body rejects even a sip of water to quench my thirst. My blackouts are back. My bones ache. I’ve lost 9 pounds this week.

When the doctors first told me they were putting me back on tube feeds I was devastated, I cried for days over this reality. I know what starving is like, I’ve been there before and it’s not something I’m looking forward to repeating. However I want what gives me the most time. My physicians believe the infections from TPN will kill me much faster than starvation and I have to agree. The infections are getting more frequent and more aggressive. My veins are narrowing and placing an IV takes 8-10 tries most times; my body just can’t take much more.

 

Everyday I feel more peace about the circumstances so I’m hoping God will comfort my friends and family the way He is comforting me. So when you pray please just ask for Gods Will and comfort ❤️ that is what we need the most.

“I don’t want to go to heaven, none of my friends are there”

“I don’t want to go to heaven, none of my friends are there.” -Oscar wild

I’ll finish my antibiotics in two days for my seventh round of sepsis and although I’ve beat this life sucking bastard 7 times I’m feeling anything but victorious. I’m exhausted. Before I even began Tpn nutrition I knew the infection risk and I had decided in my head that after 7 rounds if I had lasted that long I would withdrawal from treatment and turn to hospice. I knew sepsis was a terrible thing to go through and if l had fought that many times then my suffering would have been enough and it would be time to stop fighting this miserable battle. Well here I am finishing my 7th round of sepsis and I’m not ready for hospice. I have so much life left that I want to live, and I’m really looking forward to being Jordan’s wife. In my mind 7 rounds of sepsis would would be in a span of several years not every 4-6 weeks. Although I’m encouraged by my will to live despite how hard all of this is, I can’t help but feel completely exhausted and unarmed for my next battle.

If I was fighting on my own, alone and with no purpose behind my fight there is no doubt in my mind that hospice would sound like a relief.

Thankfully I never fight alone.
This last bout of sepsis was the easiest recovery so far and because of it I got a new tunneled line. I hated the picc line and it would have shown on my wedding day, now I have a line in my chest that my dress covers, and I can go swimming with it! Which is so amazing since Jordan and I are going to Hawaii for our honeymoon. I can’t help but feel like God allowed me to suffer one more time to give me this blessing! I’m going to get to do several things on my bucket list that I thought I would never be able to do because of my lines.

Today I have just been feeling sad. I opened up my bible to the page that was book marked and it was Isaiah 40
“The Lord is jthe everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
khis understanding is unsearchable.
and to him who has no might he increases strength.
and young men shall fall exhausted;
they shall mount up with wings mlike eagles;
they shall run and not be weary;
they shall walk and not faint”

Although I am exhausted and tired of fighting for my life day in and day out, there is someone who fights for me who never grows weary. He knows when he will call me home and If it’s not when I’m old and gray then he will make it clear to me and my loved ones that it is time and there will be peace.

 

I am looking forward to the possibilities that my two new treatment possibility’s have in store! So far no update as to when stem cells will be rescheduled for and I had a cat scan this week to get a detailed view of my MALS and should have an update on the 11th!57FC2799-A195-4373-9248-A8E6CBCC61BB

When hope is more frightening than defeat

I’m preparing for my first stem cell infusion this December. Stem cell therapy is my last available treatment for my progressive and deadly disease.

During an appointment with my neurologist who is often baffled at my body’s resistance to all medications and treatments to manage my gastroparesis, dysautonomia and POTS, He said we were at a dead end.

Every day I take an array of medications, most of which have absolutely no affect on my symptoms. I take two blood pressure medications to help with my blackouts and low blood pressure, several for pain and nausea and vomiting yet the blackouts continue, the pain persists and the vomiting is relentless.

My neurologist suggested trying stem cell therapy. Although he wasn’t technically allowed to refer me to this non FDA regulated treatment, I believe he wants me to have my best chance at life and had recently done a study on the effects of it on patients with dysautonomia and they showed great improvement.

I began my research into stem cells, initially thinking I would need a transplant and knew if I were to do the transplant there was a great chance I wouldn’t survive due to the immune suppressants and my reoccurring sepsis. I was relieved to find out that it was only stem cell therapy. A process in which my own stem cells are extracted from my fat, multiplied and then infused back into my
Body to repair what is damaged.

I saw the celltex doctor who immediately approved me and said he wanted me treated with stem cells yesterday and that I would be treated aggressively with three rounds within 9 days. He really believes stem cells will help me.

The fat extraction is finished and the crater from where they sucked fat out of my butt is restored. Now we wait.

My stem cells sit in a Petrie dish multiplying. As they grow so does my hope.

I promised myself in the beginning I would not get too hopeful because In the event that the stem cells don’t change my life I will be right back on the road I am now, a very frighting and possibly short road. It would be soul crushing and spirit shattering.
How do you pick yourself up from that?

I’m already broken, tired and exhausted from fighting sepsis 6 times, how could I possibly handle it?

I saw my gastroenterologist this last week, my doctors appointment these days are often somber. I reported my increasing motility problems and my suspicion of my colon paralyzing along with the rest of my intestines. (Bathroom trips now consist of several suppositories, enemas, laxatives, blood and tears) At the end of my symptoms review and 2 sepsis bouts since my last appointment he just shook his head and said he didn’t know how to fix it. He said one of these sepsis bouts will be the killer if it continues the way it has, but to have hope that things can get better. He talked about how studies have shown that the patients hope and attitude has an affect on the outcome in surgery, so he wants me to focus on being hopeful even in my hopeless situation and maybe that will aid towards my healing when the treatment comes along.

I had a hard time swallowing this idea. I am often a logical person, I don’t necessarily think emotionally when I’m thinking about my medical situation or my life expectancy. I just think logically… statistically I should have died at sepsis #5 but here I am #6 so it’s only a matter of time. Most days this doesn’t really bother me, It’s just a fact of life and I move on and live the best I can. So how can someone see all these facts and have hope that it will just all be fine and dandy?

Is it that I just need to put all my hope in stem cells?
I don’t really feel comfortable doing that, I’m the first one with what I have doing this, there’s no way to know the outcome.

I was reminded of an old song I have a hope

I Have A Hope

Verse 1
I have a hope I have a future
I have a destiny that is yet awaiting me
My life’s not over a new beginning’s just begun
I have a hope I have this hope

 

Verse 2
God has a plan it’s not to harm me
But it’s to prosper me and to hear me when I call
He intercedes for me working all things for my good
Though trials may come we have this hope

 

Ive decided to put all my hope In God.
I have hope that I will have a future.
Whether that be here on earth or up in heaven with him.
He has a plan and it is a good plan. One not meant to Harm me but to give me a hope and a future.
After all he does say that I will have everlasting life, now that’s some future!

There is nothing here that will be better than heaven, as hard as that is to grasp and as much as I desperately want to get better and get grey hair and wrinkles I will TRUST and put my HOPE in His word.

God is the great physician and someday I will be WHOLE and HEALED! So Lord you can heal me through stem cells or you can heal me in heaven with a warm hug and a welcome home, either way I will put my hope in you and trust that you have my best interest at heart.

 

Psalms 147:11
“The Lord delights in those who fear him, who put their hope in his unfailing love”

 

HUGE thank you to everyone who helped make stem cells possible for me! I am so blessed and have felt so loved to have such an army behind me. I feel so unworthy, to God be the glory and I hope we all get to see a miracle! I will be leaving for Mexico December 14th and will receive my first infustuon the 15th.

When sorrows are deep and words are absent.

I never thought I would be here. To be solely surviving off of IV fluids and nutrition. To know that I could pull the plug and end it all at any time is a burden I never thought I would bear. There’s a desperation in the brokenness. An endless google search looking for some way; any way out. I so desperately want to be better. I want my story to end a different way. A story that ends with children and grandchildren. An ending without tubes, needles and hospital beds. I analyze everything I do, thinking maybe there’s something I’ve done wrong and if I could just fix it, I would get better. Even so, Every sin has been repented, every gluten,lactose,gmo, sugar, food free diet has been completed and I’m left with the same answer. The same bitter reality of vomit in my mouth and pain in my heart. So when words can’t be found, I’m too broken to pray and I can’t see your purpose I’ll read this prayer  “Jesus Christ, my Lord and Savior, You became man and died on the cross for our salvation. You healed people of sickness and affliction through Your love and compassion. Visit me, Lord and grant me strength to bear this sickness with which I am afflicted, with patience, submission to Your will and trust in Your loving care. I pray that You will bless the means used for my recovery and those who administer them. Grant that my sickness may be to my spiritual benefit and that I may live the rest of my life more faithfully according to Your will. For You are the source of life and healing and to You I give praise and glory, now and forever. Amen. “

I am healed

I am choosing to be very transparent and vulnerable in this post. Just because I am choosing to share this information doesn’t mean others in my family are comfortable to do the same. So I please ask that you be respectful and direct all comments and questions about it to me and only me.

 

This summer, while the youth group at my church was on a rafting trip two of the kids came back with a parasite of some sort. This parasite caused gastroparesis. It has been absolutely devastating for me to watch these sweet kids go through what i have gone through. The boy is doing better but still vomits several times a week but the girl had it bad. Just like me she was unable to keep down any food or water. For months this went on but about a week ago she was at the end of her rope. She says she found herself hopeless and in that time of desperation she talked to God and asked for healing. The next day she was able to hold down all her food and she hasn’t vomited since. It is a true miracle and she has given God the glory all the while. I couldn’t be more proud of these kids and the way they have fought through this, and I know exactly how hard it can be.

Obviously watching someone get healed while I retch in pain would bring up some thoughts and feelings. The obvious one being; why her and not me?

 

I feel this question was one that God answered within my heart long before I watched someone else get healed while I only got sicker. I am so thankful to have had a peace about it prior because I think it would be very difficult for me (in my human nature) to truly feel happy for her otherwise. Because I have a peace about Gods decision in my own life I am able to feel nothing but joy in her healing. (pats myself on the back)

I started pondering what it meant to be healed and it lead to the thought that maybe one can be healed in more ways than one. Maybe there is emotional, physical and spiritual healing and sometimes God chooses to heal you from one and not the other. I then started thinking about where I was three –four years ago (emotionally and spiritually). It was my freshman year of college and anyone who knew me that year knew that I was a complete and total wreck.

The summer after I graduated college my parents separated for the last time, the image I had of my perfect parents and our perfect family came shattering down. We moved to California to ease the transition of the divorce and get the family support we needed. I worked at the family real estate business that summer to earn a little extra cash and there was one day after work that I remember so vividly, a day I will never forget.  My mom waited in the parking lot to pick me and my sister up from work. When I got in the front seat I instinctually knew something was wrong. I remember looking directly into my mom’s eyes and saying “what happened”. She waited until Kirsten got into the backseat and then proceeded to tell us that she needed to tell us something “very heavy”. She explained that she had spoken with a divorce lawyer that day and that we needed to know why she was getting a divorce and why it wasn’t an option to live with my dad.

My dad had struggled with a pornography addiction for many many years without any of our knowledge. In the last few years of their marriage the addiction was discovered and he attempted and failed to get enough treatment. What we learned that day in the car is that the addiction had transferred onto me and my older sister; he had been secretly watching us from our windows for years and using us for his own pleasure. Hearing the words come from my mothers mouth instantly provoked tears and I think I cried for a week straight, harder than I have ever cried in my whole life. This was my most broken, my spirit was shattered.

 

The next year at college I just simply did my best to get through; I did years of counseling but still remained very broken. It took a full year to get to a place to where I didn’t think about it every day for it no longer feel like my identity or my fault.

The real healing began when I got sick.

Stripping me down to skin and bones is what it took for me to heal emotionally and spiritually. I healed from my troubled mind and thoughts by learning the peace that comes with letting go of control and knowing that God has a plan and a purpose. I have healed from my brokenness and belief that humanity is evil, by watching family and friends selfishly do things for me and others knowing that there is nothing I have to offer. I have healed from my belief that life isn’t worth living by being given a divine purpose and a vigor for life that I once took for granted. Even death cannot harm me because the battle is won and Christ has my soul, and to me that is true spiritual healing.

So no I do not believe that God is choosing to heal me in a physical way, do I believe he can? Absolutely.

Instead he is choosing to heal me in a different but beautiful way and he’s not finished with me yet. With each day and each trial I continue to learn and heal and I believe he will be healing me until it is time for me to be whole with him in heaven.

God is so good to me.

 

 

 

Also please feel free to contact me or really just anyone if you’re struggling with pornography addiction. it’s not something you can face alone and because of the nature of the addiction people can feel very shameful and because of this they stay silent. Break the silence and get the healing you need, all things can be restored and no one is unworthy of forgiveness and help.  Allowing pornography to stay in the dark can lead to very dark places; lead you to do things you never believed you could. You are worthy of forgiveness and healing, please receive the life that God has for you apart from addiction.