Crowned is moving

This blog began as means to sort my thoughts, express my raw deepest feelings in a way I hoped would help others.

I feel it has helped me as much as it can. I will be writing my story no longer under a pseudonym but with alterations to the darker portions involving people close to me.

After my 22 year long struggle for a diagnosis I feel I can help in a greater fashion to assist people in getting their own diagnosis and living a better fuller life. My faith has no way altered and I plan to point to God as it is all by the grace of God.

Should you wish to follow me it is http://mylifewithehlersdanlossyndrome.wordpress.com

My posts are going to still be here but converted to drafts and invisible. I will be back to link my finished book, hopefully soon.

I am still unable to work. I am having surgery on the 21st and it appears I may be having a 3 year old meniscus tear of my knee if not also labral tear corrections of my shoulder and hip.

To God be the glory and if my story helps others then let it be so.

Wishing all the best, Crowned.

Advertisement

The lowest low

(Adult Content, Trigger Warnings)

My eyes were so burdened with tears I could barely see and I considered just letting my car fly off the road. It was brief but it had come all the same and left me shaken.

There is so much, too much.

How can it be this way?

I had prayed over this for years, not months, and it still just did not stop.

I worked my hardest taking steps forward and, it seemed, my health was taking double the amount of steps back.

That vision of my car capsizing was how I saw my health, careening out of control and my life was my crushed hopes and dreams littered across creation and beyond repair.

I made it through my horrible asthma and pneumonia and upper respiratory infections the doctors said I wouldn’t.

I made it through molestation by my brother.

I made it through my same brother’s attempt at suicide that I blamed myself for, wondering what I had done to make him feel the need to do it at age 9.

I made it through molestation by my female neighbor 3 years older than me age 11.

I made it through my self inflicted trauma of trichotillomania (hair pulling) when the memories came of the molestations and the subsequent teasing for not having eyelashes.

And I worked. Oh how I worked. I threw myself into it. I never skipped classes, tried hard for my grades, excelled and went above and beyond. I made it through middle and high school.

As if that weren’t achievement enough, I played the clarinet and went on without an ounce of air in my lungs due to the flu masterfully at our Grand National Performance. We placed 1st. It was this year I began experiencing strange symptoms never identified by doctors and brushed off.

I threw myself equally hard into jobs, doing my best. I moved out at 25 in hopes of saving for a house and marriage. I just could not cap the hill of $10.00 per hour.

Again and again I sought out help by my doctor for abdominal pains and dizziness. I rode out excruciating periods that made me nauseous and unable to move feeling as though I was being sawed in half by a dulled serrated blade to my spine.

I just wanted to be married like my brothers, early and to the love of their lives. I saw children and my heart physically hurt with the gasped exhale as I longed for one of my own, to feel the moving life inside.

All I wanted, I reasoned, was what a typical human female would and subsequently rightfully should. Was it too much to ask? God?

I ranted, screamed, sobbed, and felt my world slip to what I thought was nothing.

I survived rape by a man who groomed me, used me, and tossed two 20’s my way when I was concerned about pregnancy when he did not use protection. I survived when he pressured me again since we ‘already had’ even though I had told him no the first time.

I didn’t even hope to love again for 2 years when I met someone that I felt safe with. Turns out it is because I was ‘his beard’ and he did not know true love, only jealousy and selfishness. I married him. Instead of loving me, cursed me and said things to spite and harm me and found joy in the pain he caused. He broke me in so many ways I never knew I could be broken.

I put myself back together.

I survived all of that.

I successfully got a divorce and managed living on my own, scared to face the newness, the rawness, but I had my dog and we did it.

I, again, went negative due to health and tried my hardest to get back. I was out 11.5 months at 70% pay struggling but I survived that.

I survived being forced back to work, though it seemed barely as I almost fainted and had my knee give way 4 times.

I survived 20 plus doctor visits with my first and what should be my most supportive doctor being condescending and belittling and ultimately disbelieving when I found my own diagnosis.

Turns out I was right. On the one hand I felt better because it had a name and I could try to treat myself based on the existing group of people with the diseases. I did and still continue to study to better my life as I am finding there does not seem to be a doctor in existence willing to be an advocate.

Then, I found out I may be unable to have children, possibly too great a risk for myself as well as the unborn child. My last hope of the normal healthy life I wanted puffed out of existence.

I am working to live. I am not thriving. I am existing.

Living on a hope, hanging on a prayer.

Is this all that I am worth?

By the world’s standards, yes. Where men “Eat and breathe money” and success by contribution and ableness.

Have you ever been at the bottom of a well? Do you feel worthless?

The silver lining is when you hit your lowest low is that the only way you can go is up. And, you are not defined by what you have been through or even what you have done. You are more.

How much more?

More that if you put your faith in a God you perhaps cannot see? Think of His disciples in His day.

Jesus responded, “Thomas, now that you’ve seen me, you believe. But there are those who have never seen me with their eyes but have believed in me with their hearts, and they will be blessed even more!”

~John 20:30
The Passion Translation

And you can pray and see it happen? Be wary in just assuming because you want something so that it will be done. Once you have undergone the change of accepting Jesus into your heart and the Holy Spirit guides you it should alter your perspective and desires to be of His will.

²⁰ He told them, “It was because of your lack of faith. I promise you, if you have faith inside of you no bigger than the size of a small mustard seed, you can say to this mountain, ‘Move away from here and go over there,’ and you will see it move!^[a] There is nothing you couldn’t do!

~Matthew 17:20
The Passion Translation

What even is a mustard seed? It was a reference to one of the smallest seeds, only 1-2 millimeters in size, that grew into a tree up to 30 feet in width and height. When you pray, be sure it is in faith and with humble recognition that ultimately it is up to Him in granting the gift requested. The answer may be yes, not yet, or even no. Don’t Put God in a box!

satan loves to drive you to despair. He is good at pushing just the right buttons, showing you what others have that you do not. If he gets you down into the well he is winning.

Perhaps. God can heal you but first you must give Him all the pieces. You must give Him all of you. There is no gift we can give to suffice the sacrifice of His beloved Son in place of us so that we could be His adopted children.

How do we win? satan gets upset when we decide we are good enough. God chose you. He sacrificed for you. There are so many things under way that you do not even know what He is doing behind the scenes.

We can be bitter and resentful for what we went through but sometimes we are the ones to blame. I was when it came to the marriage I was in. I did not enjoy the loneliness I felt and I loved him and, you know, God can heal and change people.

Had my brother not attempted suicide and been confronted with a decision, give up the drugs to come back home, he would not have moved to where he met his lovely wife and had his beautiful three children.

Had I not had the experience, certainly not something I enjoyed nor praised about, of molestation and rape… perhaps I would not be able to empathize with people as much.

We each have a story. We can each have a comeback story. Sometimes things have to happen the way they did. We are creatures of, not only habit, but choice. We are given the gift of choice. He wants a relationship with us.

Think of it this way: If a man owns a hundred sheep and one lamb wanders away and is lost, won’t he leave the ninety-nine grazing on the hillside and go out and thoroughly search for the one lost lamb?

~Matthew 18:12
The Passion Translation

He loves each and every one of us, even you. Just because you do not see how He works in the mess of your failures and your suffering does not mean He does not exist, does not care, or is not present.

Even in our spirits we have growth. I believe very strongly we suffer growing pains as well. Jesus did not live pain free, perhaps the most celebrated and well-known life of sacrifice. He still had to learn, still dealt with human life issues such as need for food and water. He even asked, though with preface of if it be God’s will, to take the cup, the death on the cross from him.

Next time the deceiver comes to you, you tell him “I am a child of The King! You have no power over me!”

There are seasons for joy and for sorrow. God is bigger than your circumstance. Perhaps you are in the mess for a reason. Perhaps this grayness you are feeling is a tapestry color being woven into the design and know it is not permanent. It is hard to see the reason in the moment. We are not capable of fully seeing God’s purpose or allowing of us to go through what we do.

David, known just as well for his adultery with Bathsheba as the murder of her husband, had been recognized as a man with a heart after God. He went to God in times of woe, anxiety, joy, and praised Him knowing without Him he would have nothing and be nothing.

We are not expected to be perfect. We are expected to follow after Him. We are advised not to seek after worldly possessions for how much harder is it to let go of things we have?

Again I tell you, it is easier for a camel to go through the eye of a needle than for someone who is rich to enter the kingdom of God.”

~Matthew 19:24
New International Version

I enjoyed very thoroughly God’s Not Dead where Mark and Mina’s mother has a brief moment of lucidness with her son. She describes how men of wealth who love the dark instead of the light and live in their desires often are successful but it is in fact a facade. satan tries to make us comfy, make us desire things we do not have to seek them instead of Him, until our time on earth runs out and ‘the door’ shuts on us. Time has run out.

My story most likely will not reach millions of viewers and perhaps it is too grim and difficult for some. I would hope to think it can be a beacon of hope. Just because we may have God in our lives does not mean it has always been rainbows and sunshine. Rainbows come after the rain and symbolize God’s promise to never flood the whole earth. I take time to think and dwell on them for all the other promises He has made.

It is as the saying of the footprints in the sand. I have heard numerous representations of it but this is one I found. I do not own this.

Last night I had a dream. I dreamed I was walking along the beach with the Lord. Across the sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand: one belonged to me, the other to the Lord.

After the last scene of my life flashed before me, I looked back at the footprints in the sand. I noticed that at many times along the path of my life, especially at the very lowest and saddest times, there was only one set of footprints.

This really troubled me, so I asked the Lord about it. “Lord, you said once I decided to follow you, You’d walk with me all the way. But I noticed that during the saddest and most troublesome times of my life, there was only one set of footprints. I don’t understand why, when I needed You the most, You would leave me.”

The Lord replied, “My son, my precious child, I love you and I would never leave you. During your times of suffering, when you could see only one set of footprints, it was then that I carried you.”

Authorship is disputed so unknown

Kintsugi is a form of expression in making something more beautiful. A piece of pottery can fall or be broken but it is often pieced together with gold creating a piece of art. We started as formless, the first humans as earth, and were molded- designed individually by Him. He knew us before we were born, He knows us now, and He wants you to be with Him always. It is The Real Cinderella Story

Live, Laugh, Love

When Your Cup Seems Empty

I have now lost count of the doctors. I am learning insurance is great if you are not overly sick. What do I mean by that?

First things first. God is able, God is good, God is in control. I am not. Any idea of control we have in our life is a falsehood. Thankfully, Someone better is.

I wish I were able like Paul to accept the physical pain with joy. It is hard when you hurt every day and have to sit every ten minutes or debate on a shower that costs up to 33% of your energy you have to spend on a day. You can debate on using that 33% towards something more productive or not as taxing. Thankfully I have improved but, again getting ahead of myself.

I am generous in saying 5% of the doctors I have seen know what Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachychardia Syndrome (POTS) are. By the end of April, after my last post, I had worsened pain in my jaw that had been dismissed as my Temporomandibular Joint Disorder (TMJ) as far back as 2015. I was referred to a neurologist pretty far away and thankfully was able to do a telemed visit than commute and risk exposure to Covid-19.

I got very disheartened as he thought my dizziness may be caused by another diagnosis based off of a 2018 MRI. He did not request a new one but, just to be safe, he referred me to see an Ear Nose & Throat doctor. Thankfully my mother suggested Dr. Sebastian as he had worked with the doctor that performed her parotidectomy. An Audiologist appointment was required before seeing him but it was found I had some hearing loss. During the test where you press a button when you hear a beep I could feel pain without hearing the sound for my right ear so I believe the results still skewed a bit.

We ruled out my Semicircular Canal Malformation (too thin inner ear bones and thinning of the membrane) to be the cause of my dizziness. I told him about the jaw pain and how it seemed I have a more noticeable bump than before. I also explain about my mother’s parotidectomy and how I am 3 out of 4 generations to have this pain.

“Odd” he said but he felt and then we scheduled for a biopsy. It began to release heat to which he said “We don’t like that, that’s not good.” The pain exemplified to what felt like an electric drill whirring into my jaw at a -35 degree angle traveling through where my wisdom tooth had been removed all the way up to my eye socket. The biopsy did not say cancer but yet it had mucus and clear liquid, a cyst. He said if I wanted surgery we could. Having had this constant pain every day for 5 years I hopped on board.

I submitted the admissions paperwork to the specialists for EDS and POTS 3 hours away the day before surgery, May 25, 2020. Thankfully someone in a support group I had joined on Facebook had an instruction paper of what to do’s and what not to do’s when dealing with someone in the disorder spectrum while performing surgery. The anesthesiologist and nurses also saw the paper and asked questions.

Upon taking out the cyst my ENT said he thought by the feel of it that it was cancerous. It was sent off to pathology. Thankfully I did not have any of the considered side effects. I was able to smile and the only loss of feeling was inside my ear and the lower 2/3 of my ear as he had to cut it from my neck. I did not develop first bite syndrome where it is horrific pain on first bite of a meal or sweating on the neck while eating, as the parotid glands are part of the salivary system.

I am all but fully recovered with muted tingling sensation at touch but I feel my whole ear. The results of the pathology were inconclusive, showing “chronic inflammation” but certain diseases were thought of and ruled out.

My employer grew impatient and wanted more documents filled out. Thankfully my ENT filled them out along with the HSD and POTS diagnosis. He did not say when I could go back, that I need to see the specialists. He was somewhat knowledgeable and also thought perhaps I have Marfans.

Needless to say it has been one hurdle after another with my employer. I went back to see my Primary Care Physician with the added proof I most likely have EDS, was diagnosed with HSD, POTS, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Endometriosis, and migraines.

She didn’t add anything about her “everything under the sun” but, instead, stated “You’re too complicated. You’re beyond my help. I can give you a referral to a psychologist or, as a very last resort, a pain specialist.”

Wow. I have been seeing this woman for 10+ years and I always felt distinctly she only partially diagnosed me with Celiacs.

I called Baylor College of Medicine, the specialists, for almost a month pestering them to see when I could get in for a first appointment. The answer is September 17th.

Last Friday my cardiologist called to say my insurance was not going through. My employer cancelled my insurance. I got an unexpected lump sum from them for Short Term Disability for which I did not even know was possible. I was and am so so very grateful.

However, they sent me a new packet last month. I cannot get a doctor to sign off for me to be out of work. The company my previous PCP works for is where I have been going for 20+ years. Their reason? The specialists have to sign it… The specialists I can’t see until September.

I have lost my apartment, thankfully just able to make it to the end of lease so I will get a partial deposit back. I have no income. And, now, I have lost my insurance. My parents and I are undergoing a lot of stress. I have become defeated on more than one occasion. This seems like a gaping looming hole of despair.

Is this what my life has come to? Great credit score making me eligible for a home within my goal plan of a house by next year to nothing in the account and a string of appointments one after the other without insurance…

What have I done wrong? I mean, what happened to the “You work hard you can have the American Dream?”

My mom started watching a Bible study series that she sent to me, It’s not supposed to be this way by Lysa TerKeurst. (link is to a preview on Youtube and explanation of what it is about)

I am measuring by the world’s standards. In the midst of my woes I wallowed. I met a lovely person online who has it worse than me but her smile is shining. I am prodded to remember Haiti. I remember how He has let me make it to the end of my lease as I sell my furniture, donate what I can’t sell, and watch everything I consider mine fall through my grasping fingers.

It really isn’t supposed to be this way, Dear One.

I was even further humbled tonight as I listened in to their couple’s group study. Stephen Furtick was talking on how we are going through a storm and He will get us through, It had to happen (link goes to his sermon on Youtube). We can pray for saving. Sometimes we, instead, decide to chose a path that makes our situation worse.

It was sobering. I have a great divorce sized situation I could have clearly avoided if I hadn’t felt the draw of married life to a man I really loved but did not really love me. Yeah, that may have been avoided. I may not have arrived at injuring my arm in 2018 as I followed him to my current employer, a place I never would have picked on my own.

He went on to talk about how Paul, imprisoned and being taken to Rome (Acts 27), told the centurion that there would be bad weather too dangerous to brave on the seas. They did so anyway and then a storm came, just as he had said. God said to Paul through an angel to tell them to stay on the ship, that it would break apart but they would be spared.

Why had they left? Because they didn’t like the place they were asked to stay.

I was finally able to open my fingers. I certainly don’t like where I am. I have never before had so little in the way of earthly possessions. I have another potential surgery looming and I think about how my insurance I no longer have paid 56 thousand dollars of my first and only surgery back in May and how there is no way I can afford such an expense. I would not have had this had I not been forced back to work.

Did I enjoy that? Of course not with the pain and nausea and nearly passing out.

I applied for Social Security Disability as I cannot even cook for myself. On my better days I can manage scrambled eggs or toast or, if sitting down while prepping, can make a rice meal in the instant pot. The status just says “initial” and I keep checking. I was told to look into Legal Aid and I am so grateful. I was referred to a lawyer and they took my case.

This still does not solve the issue of my employer. They have ended my short term disability and say I must appeal and have the same papers doctors are refusing to sign turned in by the 17th. I am at risk of being told to return to work.

In the eyes of the world I am very vulnerable and as my friend who I discovered, facing terminal ovarian cancer in addition to her EDS not likely to live to see her son graduate, “You have to be well enough to be sick in our society.” It is backwards as those who need it most fall into the cracks. Being employed I am ineligible for the unemployment benefits and received the one stimulus check.

COBRA wants $1,000 a month for my pre-existing conditions.

But God can make a way. He is Way Maker, Miracle Worker, and Promise Keeper.

The end is coming and I wish to hasten the day. I wish to be ready! We will be taken home and not be here in this realm, if He wills it, to witness the days of real strife that are coming.

We need to focus on the destination, not the circumstance, because faith is like a bicycle.

I pray for all who are hurting. My pains are certainly not the only in the world. I know four beautiful souls who have passed from Covid-19, one being my wonderful Great Uncle. He was caretaker to my wonderful Great Aunt with dementia and cancer. Their daughter, widowed just two years ago by cancer, has her own recently divorced daughter and two children living with her so I ask for prayer of provision and comfort for them.

We also lost a friend to stomach, colon, and liver cancer after being diagnosed only a month prior. I am sure both of them were greeted as “Good and faithful servants.” I ask for prayer for his widow as they were childless and had a business she thought she would lose. Thankfully her nephew has stepped up and is helping her.

I can only imagine the reunion we will have and like Max Lucado has been preaching on “The Gift of Unhappiness”

What?

(link goes to Max’s short sermon on Facebook- He does one almost every day)

We were not meant be in pain. We, instead focused on the one thing in the garden as Lysa TerKeurst explained beautifully. satan got Adam and Eve to look from all of the other trees to the one tree of many they were not to touch.

True peace is coming. He will reign in full and satan will be cast into the lake of fire. Prayer is our weapon as it centers our focus on Him and our destination. It is powerful. Use it and don’t put God in a box. Pray with expectation and without ceasing. If something makes you angry or hurt, trust me God can handle it.

When your cup seems empty, lean into God and He will fill you.

Back from a fall

So… Where to begin…

The divorce went through but it was a very stressful process. I ended up having to sit down with him to sign the paperwork after paying the fee to have him served. It turns out the county failed to give him the needed documents. There was never supposed to be any face to face interaction as I was scared of how he would treat me. It was the kindest he had been to me in years, if not since mere acquaintance-hood.

I had started putting my foot in the water and dated a really kind guy for a while. I could see things progressing and he was great material. His family was and is absolutely awesome. Before the divorce had gone through I was separated almost 2 years and I did not anticipate the emotions so I had to withdraw. There were also just some fundamental differences I could not overlook.

My ex husband and I both work(ed) in the same building but never saw each other as I worked Sun-Wed and he was Thurs-Sat. I was injured December 2018 while on the job and was out 11.5 months for recovery. Fast-forward to January 2020 and I hit a rapid decline of health.

First, I need to touch on the amazing things God has done in my life. The injury was what I believe to be a sign I was neglecting my gifts and need to pursue them as a literal intervention. My dominant hand to my elbow suffered minor tendinitis… apparently my underlying autoimmune and connective tissue disease unknown to me extended the recovery time by at least 3 months and was very likely behind my injury to begin with.

My just improved pay was reduced to 60% and I could not wash dishes, write, drive, clean, and the list goes on… More importantly to me I could not draw or write. I had all of this down time where work was no longer leaving me swollen and hurting and I physically was incapable of my gifts. I did go through a bout of depression but the ladies in my mother’s Bible study group strengthened me. Our pay raise came right after prayer and they never stopped praying.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
~ 1 Thessalonians 5:16-19

I got another job that would fit my restrictions July 29 but they let me go September 12th with the option of resignation or termination, non-disciplinary and “just not the best fit”. I quit so as not to have a termination on my record. I had not realized it but my main job I still could not work at cut my health insurance. My funds depleted quickly and it looked like I would not make ends meet. We prayed and we hoped with expectation.

My job stocks vested and I got a tax refund and… I was good for a few more months- even paid off my car!!! December 2019 I had to see a doctor that did not care about my injury and said I should have gone back to work in May, 7 months prior, which if he had even looked at the MRI done would know that was not possible. I had to return to work that same night and… after 11.5 months a lot had changed. I had been replaced and so many new faces and a complete restart. I hoped it meant new and better beginnings.

Good news, health insurance kicked in as soon as I was back. Within 3 days I was sick with the flu and my 67 year old father had to drive me to urgent care. Perfect timing on that insurance!!! I was back to work in early January with a recurring feeling of abdominal pain. I have Celiacs Disease but I thought maybe a Urinary Tract Infection. The doctor said the culture looked normal but he would give me antibiotics.

I am learning little too late that certain antibiotics with my genetic chronic condition can cause huge flare ups. I was working and sweating. The heat was getting to me so much worse than I could remember. My knee almost gave out from under me at least four collective times on separate shifts and my neck, back, knees, ankles, wrists, and elbows were all popping/displacing when I tried to pull anything over 10 pounds.

I had to take some unpaid time off as I had no vacation or paid time off, none accrues when on leave. I did this just long enough for my 2 stocks to vest knowing I was going to take a financial hit, praise God. And then… the appointments… and deep search for identification of the elusive recurring chronic dizziness and abdominal pain.

It was scary. My heart was jumping from resting rate of 60 to 165 just by walking to and taking my shower. If I looked up I started blacking out, a symptom of four years, and my neck was so tense I could not turn my neck left. It would pop and I would feel dizzy, not the world spinning but as if in a moving vehicle with everything passing by.

I would sleep up to 22 hours a day and feel exhausted. The longer I was upright the worse I felt, even impairing my cognitive function and memory. I was having to ask my subordinate whom I had trained in the functions a year prior, how to do or where to find something, and had moments similar to dementia where I could not remember what I was doing. It was on my worst night of this I experienced nausea so extreme and knew I was going to hit the concrete floor within minutes if I did not sit down, something not allowed unless in break room or facilities. I left after having the workplace health team check my vitals, ‘within normal range’.

I took to Google when I was able to stay awake. The search was fruitless.

I found my answer in a Youtube video about vintage hair styles and dresses… when I wasn’t even looking! It was as if I was hearing her speak my life experiences and how I felt for the last twenty-something years. I posted on Facebook after an ‘AHA!‘ moment. I posted “I have Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).”

This was right before an appointment with my Primary Care Physician. My mother took me as the dizziness was so trying, ironically better when actually moving. The physician admonished me for looking on Google and researching stating “You have 1st Year Google Syndrome” and “I have everything under the sun.” I bit back my retort but was admittedly steaming.

She also said “Usually EDS is diagnosed in early childhood.” Meanwhile my mother was sitting in the room, 64 and just diagnosed within the last year with Mixed Connective Tissue Disorder- Not to mention I have been seeing her for over 10 years and repetitiously coming back to her for alternating abdominal pains and dizziness/fainting. I listed the symptoms and she agreed to send me for a specific test I found and requested/insisted upon to diagnose the dizziness… A Tilt Table Test where you are strapped to the table and it is tilted to imitate standing to measure heart rate reaction. By the way, it IS POTS, a diagnosis and looking more like what we thought!

***There is further history there hinting towards my mother needing further diagnosing but passing for now due to length and also she is more private. I strongly believe we know the people who carried it on her side as there is a cardiovascular type and there are 2 known generations to die of blood clots and my maternal grandmother has congestive heart failure.***

On our way home from the appointment I looked on Facebook and my aunt had responded “Your cousin has those too!” I felt so much relief. I had proof this hereditary beast was in our family and on my mother’s side. If someone has it there is a 50% chance to pass it to children. Or, for someone to have it without a parent directly passing it on both parents must posses it in a recessive mutated gene. The thing my doctor seemed to be treating like a unicorn was an actual existing creature.

So far I have seen over 10 doctors- Gastroenterologist, Rheumatologist that knew nothing of EDS so suggested another referral out… Blood work was requested but there is a catch. There are 14 different types and the type my cousin and I have is not determinable by blood work. The only place within 3 hours to do adult blood testing for this thing I probably wouldn’t have identified by the test to begin with only deals with cancer patients.

So, another dead end.

I was getting frustrated and praying. Ok, I know the name of this and symptoms but how do I proceed? It was getting very precarious on the job side but He pulled through again with my chiropractor being the only medical professional willing to sign papers to excuse me from work. Since no one was giving me a diagnosis no one would sign off. I had been out of work almost a month at this point and, with no money coming in and no insurance, there was no way I could continue this journey.

I sold my stock and, Ok God, I am good another month. I got my tax return and, Ok God, I may make it through another month or two. I searched on Facebook for groups after talking with my teenage cousin’s parents regarding the diagnosis and process. She had only been officially diagnosed only a week prior to my post. It was in a post of one of these groups I found an Osteopathic Doctor in 2 hour drive that had officially diagnosed the poster. We had been on our way into Austin for that blood work when they called to inform me they could not do it. It was then I called the doctor I discovered.

They had an opening the next day. We go in to Austin again and she nods at everything I say, jots everything down, asked pertinent questions along my research and gave me a diagnosis on the spot… of Hypermobile Spectrum Disorder (HSD)… not quite EDS as “once diagnosed there is no removal of it from the records” so semi-diagnosis but hey, better than I was with my PCP.

So, here I am still going to doctors but thankfully I am finding people familiar with this and ruling out all of the hand-in-hand comorbidities often found with hEDS. What does that mean? Well, everything I have told the doctor as a symptom fits exactly where I thought. Thankfully my heart has not suffered and is healthy. The Cardiologist prescribed me a beta blocker and my heart is only going up to low 140’s instead of 180’s.

The pain with this condition seems to have been activated by the antibiotics in January and I have always been resistant to any type of pain medication other than Ibuprofen (a common issue of hEDS). Thankfully the Osteopathic Doctor prescribed me a medication to deal with the pain, headaches, and sleep issues. The beta blocker and pain medication is working!

I am back to sleeping approximately 8 hours a day and have been able to do dishes and clean a little! This is something I intend not to take for granted again. 

I still need to undergo a possible Sleep Apnea test. I will be seeing an Immunologist later today and a Neurologist this coming Thursday. I am at risk when it comes to COVID-19, but may need disability and so far only excused until the 20th of this month but I am praying and hoping with expectation that, after all of these perfectly timed Divine Appointments that… He’s got me… He’s got this.

After all…

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?”
~ Matthew 6:25-26 (NIV)

Sorry for the lengthy post but He is good!

I am continually praying for everyone in this daunting time. I know, positive test result confirmed, at least one person with COVID-19. He went on a mission trip to Haiti with his son that took place right when it started spreading in Florida. Unfortunately, most have not been able to be tested yet but my parent’s Bible study group has at least 8 others feeling under the weather right now. They are my parents’ age and some have underlying health issues, such as the higher risk Fibromyalgia. My parents have yet to show symptoms but were present at the gathering the same time as everyone else.

We are social distancing as much as possible. I am making sure to gargle with salt water, already having to take it for the hEDS & POTS diagnosis anyway. Washing everything and steering clear of other folks.

The Dangers of Compartmentalization and Faith

When reading Philippians I have to wonder just how far I will go.

In addition to wanting to draw or sing for Disney I wondered how neat it would be to take pictures for National Geographic.

That is… until I saw the mosquito nets and realized from my hobby minimimalist photography practices, much like fishing or hunting, you have to wait for the right shot. They deliver AWESOME pictures but at a great price I am not so sure I am willing to pay.

I have been to Haiti with relative safety, mistakenly having watched Serpent of the Rainbow before we embarked. At 10 years old I strongly advise parents to not allow your child to watch this. The safety of tourists has become more questionable, including the locals as well. Our native missionaries were affected by the earthquakes and had a car stolen at gunpoint but things are advancing for the church.

I had a friend in high school who I loved like a sister leave with her family to China for ministry there and lost touch. For their safety we were not allowed to discuss their real reason for being in the country. Here in the states it is rather difficult to picture just how easy it is to worship whereas in China and other countries it is viewed as extremist and a threat to the government.

Meanwhile, here in America we talk of gender identity and toilets and Instagram and Facebook. It does seem to be venturing towards persecution of the modern day church and I feel many have already become submissive and silent. I strongly dislike talking of politics and candidates where I feel I vote for the lesser of evils and I have no desire to start now. I just know, judging by any media outlet, we need as many prayers as we can get.

Back around Sophomore year I can recall the debate of removing God from the Pledge of Allegiance. I remember when it became taboo for teachers to broach the subject of Christianity. I must admit I stewed a bit. I gathered friends of different religions and we made a study of it after school with friendly conversations and comparisons of the differences between our beliefs. Each person was given a meeting, once a week, to have the floor and open questions after. Not once was there a raised voice, cursing, or insult passed among us.

I do not pretend to understand the draw of bikini models and Lamborghini cars, man buns, Kardashians, and Jenner. I will not insult them either. I am imperfect and I am no judge. I just wish to know how a Mormon, Baptist Christian, Christadelphian, Wiccan, Methodist, and Atheist could get along so respectfully and then witness all the mayhem on the television…

There are some questions impossible to answer- or rather by any mere human.

What price am I willing to pay?

Can I see myself in a situation where I am faced with a gun and my answer to a single question decides my fate?

My Fate Versus Destiny

This word fate is only encompassing the now- till my death in which I depart. We put too much importance in our success through the Relativity of Time.
My destiny on the other hand, I would hope is to spend my eternity with God.

Approximately 2 years ago I had been applying for a job. I had put on my application to not contact where I currently was working, but the employer managed to do so anyway. Needless to say my manager found out. I remember hearing her take the phone call.

Not long after she and another coworker, my direct supervisor, attempted to fire me and that led me to finally take the plunge with documentation and proof of all the broken protocols and how they targeted my food allergies. As a result two were fired and a third nearly so but I had no desire to remain there.

I could have probably taken it farther. I questioned based on my faith if I had done the right thing at all. I had prayed they fall to their own trap and God keep me standing strong. I did not wish to be the one to execute the process.

Since then I have been working with another company and within a month of hire was training new associates in my role. I have, to date, trained over 200 employees and became a Managerial Assistant with the ability to try for Area Manager this approaching November.

But, I have to step back and let God. I cannot fall for the ruse satan wishes to become my focus. This never has nor will define me. First and foremost I am a daughter of the True King and my main concern should be furthering His Kingdom.

I have recently listened to the 9 Attitudes That Keep You Happy by Joyce Meyers. She brings a good point to the attention of the audience. By birthright and acceptance of Jesus we have power. We have the BIGGEST POWER in our corner of the ring.

Her main points are covering the beatitudes

Matthew 3:5-15
Blessed are the…

 

Poor in Spirit
Those who mourn
The meek
Those who hunger & thirst for righteousness
The merciful
Pure in heart
Makers & maintainers of peace
Persecuted for right
Unselfish

 

But, what are we doing?

Are we actively pursuing and craving after God or are we falling victim to distractions and comparisons of those around us? For us to activate and maintain that power we have to do the work.

I do not want to be a “yo-yo Christian.” I have been in a “yo-yo marriage” and I realize I put myself there. In this time frame I let the thief in to steal my joy rather than lean more on God. I am now closer and chasing doctrine, but, if we are diligent and pursue Christ wholeheartedly- wise as serpents but gentle as doves we will not falter as I have.

We cannot live with proof of fruit attesting to our faith if we are not first acting in and of faith. We have to give up the milk and grow up as Christians. Sometimes our faith may endanger our job or our livelihood but as Joyce beautifully articulates “It was God that gave you this job. If you are faithful to Him, what is to keep Him from giving you a better job?”

I sit on lunch break with people I hardly know as my schedule changed with my promotion. Not only is there the oddity of not knowing each other well, there is also the awkwardness of my being higher than them. I try and be as approachable as possible but I have been testing the waters as to their beliefs.

One man easily bad mouths Christians as people who “force their beliefs on others” or “believe in some magical imaginary being up in the sky” or, the latest, “don’t believe in evolution whatsoever.” Some people who claim Christianity do this.

We so often compartmentalize. We treat our parents differently from our coworkers from our church family to our closest friends who, if we really look, may not be drawing us closer to God. Perhaps this requires a change. I do not wish to ride on Joyce’s sermon, but it reiterates what I have already felt for a very long time. The front we give in church as our best self should be our only self.

We should treat everyone equally and not dish out punishment for evil given. Pray blessings over those who hurt us.

14 And we exhort you, brethren, admonish the disorderly, encourage the faint-hearted, support the weak, be longsuffering toward all. 15 See that none render unto any one evil for evil; but always follow after that which is good, one toward another, and toward all. 16 Rejoice always; 17 pray without ceasing; 18 in everything give thanks: for this is the will of God in Christ Jesus to you-ward. 19 Quench not the Spirit; 20 despise not prophesyings; 21 [d]prove all things; hold fast that which is good; 22 abstain from every form of evil.

~ 1 Thessalonians 5: 14-22

Her testimony is amazing and I can draw strength in that it is much like the movie “I can only imagine.” If we love the unlovable, is there really any better proof of God’s love and redemption?

Is this not what Christ did for us?

Commit to the Lord

I do not claim this image.

It is after I believe I have strayed from this that I now stand facing a crossroads.

How did I get here?

Perhaps you have found yourself there too. The mess seems so wadded and knotted up that you cannot identify where the beginning of the strand starts or how to unravel it to move forward. You pull a section which tightens another and realize nope- not the one, try again. I am realizing I have to step back and

 

I do not claim this image.

 

In this I have learned much more of what God goes through with me, the patience and hurt and love regardless the inflicted pain.​ I have also learned love is not enough.

God is enough, my portion is full. I could be so much worse off than I am. He has kept me in His hand throughout these trying times. I feel tempered and maybe sharpened. I know the pain deep within my chest is sharp but it is dulling.

My marriage- yes I got married and drifted from my writing- is failing. I loved someone and experienced the pain God must go through daily when… we choose not to follow… to show Him we love Him… we put Him on the back burner… when all He wants is a personable relationship. That is all I wanted, to be sought after and loved, given protection emotionally and physically- A team seeking to better ourselves and after God.

Instead what was found was neglect and abandonment, the lack of desire to improve or chase after what seemed to be anything than immediate gratification. It does not diminish my love but I am much more fragile than I was. Words spoken cannot be unsaid. They can be forgiven but the gashes and scars with ghost pains are still there.

19 My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry,

~ James 1: 19

 

9 Do not repay evil with evil or insult with insult. On the contrary,  repay evil with blessing, because to this you were called so that you may inherit a blessing.

~ 1 Peter 3:9

I have been seeking a new place to live, gotten a new job, a promotion in the new job, the ability to go to school again, a dog, and the gaping option of transferring to a new location with the job… a $10,000.00 package for relocation with me being locked into a new home, a new city and state for a year minimum… Hearing it is much easier to promote faster by doing the transfer… There are better paying jobs that I may or may not qualify for but I get a payout based on productivity as an individual/company building that can come out equal to with decent benefits.

Do I stay or go- simply another job or another location away from everything I have ever known? Some parts of me think it could be good to start anew. Please pray for me and discernment- the patience and ability to wait on Him.

Act on Love

Love cannot be bought
Empathy cannot be taught
It is sympathy often sought

We disassociate by games and movies
And get stuck not feeling, going through the motions

What we need is a little more humanity
Turn away from all the vanity

Embrace your loved ones
Show your daughter and sons

Turn off the screen and look them in the face
Where is the empathy gone without a trace?

It should not take a word to spur an action
The injustice often goes without any traction

We should be outraged at the robbing of the poor
Perhaps we should reopen our door.

People stop going to churches because they don’t feel they belong
This community, I feel, has long been gone.

Replaced by a church of likes, yells, shout outs, self-worth in the limelight.
How have we become so blinded to our fellow man’s plight?

Never has walked in someone else’s shoes become so important.
For I feel our love, our hearts, our minds have truly become dormant.

Stop going through the motions, stop stopping because it hurts.
To live is to experience loss, but if truly lived there is joy.

Time is not endless and we are but chaff and we don’t know how long we have.
Quit putting off what is really important- the part that feels and the more important half.

Love is not just a feeling but a verb- it is time we lived our words and perhaps as a people we will feel again.

 

~ March 19

Just because I am Christian does not mean I have all the answers

In fact it means just the opposite and that I am admitting my imperfection… my humanity.

I am swimming in a sea of I don’t knows at the moment. I am being torn asunder and plunged into eddies beneath the visible surface, struggling to breathe.

God is my lifeline but over the last few weeks it feels as though the boat I am being tugged behind has a line too long or the raft attached just not buoyant enough to stay above the choppy surf.

I can’t afford the house payment this month. I have to get another housemate. I did not get the job that would solve my financial woes and yet again I feel helpless and useless…. a dead weight to my parents. I am willing to do almost anything and everything to make it but my health limitations, because let’s recognize them for what they are, hinder me from a broad span of them.

I am two years at a job that feels like it is sucking my soul out- I have never been at a job so unprofessional with such vindictive evil people and I try to love, I pray, and I wonder why I am here. The people here seem to hate the light and dislike me for reaching out to customers and being real.

I would go back to selling glasses but I need healthcare as my depleting savings/checking are a consistent reminder, 6 visits to different doctors and an ER visit later last September, through May of next year (just under tax exemption so ended up paying IRS to discover 2 months later and too little too late had the system been faster I would probably have been paid by the IRS). Add that to a house and car payment and utilities and my 40 hr job just doesn’t cut it anymore. I would be a server but… crosscontamination with celiacs is a real concern in that industry. No delivering pizzas for me.

I feel myself being called to work with children, that I am to use my gifts… but how? My money is His money… but what to do when it seems you are at empty? He is able, I am grateful… I have food and my parents will let me borrow… but what of next month when my housemate pays nothing on rent because it is her last month and she already paid for it?

I remove myself from the IMpossible and pray to let Him take over and allow it to be POSSIBLE.

I know it is when we are at our weakest that He can seem and be the strongest.. so I really feel about now that would be amazing.

He knows the plans He has for me. I have a dream and a hope and I am trying to keep my joy because it is a choice… I have to hand it over to the thief for him to attain it.

A Prayer for All of Us

Thank you for giving me what I need and not what I want. Sometimes You give me the nutrients instead of the dessert and I think I am lacking. What I do not realize is that You are shaping me… The me before the me now was shapeless and base… a part of the mire destitute and unsightly.

But then, You removed the muck and added purity to draw out the precious metals and gems in my depths- of You… before our imperfections. Now I begin to see the need of You and those around me also of the mire. There are those who see themselves more than the other pots when they are not of you… they are of coal and black and festering.

You call us to be more of You, less of us. I cannot cast stones for I was lost and bound to death but You gave Life… and You continue to those who seek it. I pray that You lead us in these times of need to You. This strife burdens my heart and I cry out to You- You are powerful, able, and awesome. I do not understand but Your grace, Your love is more than I could ever fathom. You are unchanging and steadfast in the gales which buffet my soul.

Turn our eyes towards You- draw us near and let us not lose sight of the goal and gift of life with You. I pray for my brothers and sisters taken, that they be under Your wing and protection. Those in Your hands cannot be plucked out. satan has already lost and I pray these children not. I weep for those in loss but hope they find Your grace.

I come as I am, as all of us must… for what can we give the Author of Life? Let us not lose sight of the real threat and remember that we cannot fight alone… When You are for us, who can be against us? I pray for the families, friends, and spouses- not just of Orlando but all Your people. Let us forget skin, preference, and let us remember… a servants’ heart… A servants’ love.

We are all one race: humanity ~~~ Prince of Egypt
ALL lives matter.

Rebecca St. James
You’re the Voice:

This time, you know we all can stand together.
With the power to be powerful believing, we can make it better.
We’re all someone’s daughter, we’re all someone’s son.
How long can we look at each other down the barrel of a gun?

You are the voice, try and understand it.
Make a noise and make it clear.
We’re not gonna stand in silence.
We’re not gonna live in fear.

It is not about guns… it is not about gay… it is not about the choices we make… we are His children and the thief comes to steal, kill, and destroy. He comes to pit us against each other when he is the real enemy… but we are not able to fight him on our grounds.

Pray.

Love.

Pay it forward. We were given the ultimate gift- now to pass it on.

On another note people have requested updates for Heather, but she is distant. She has recovered very much but I know nothing beyond that. Another friend’s mother passed away from colon cancer and my cousin passed away from pancreatic cancer so I thank and ask for continued prayer for their families. He is good. He is Faithful and He is able.
Though it may not be the answers we want He does answer prayer… sometimes with a no, sometimes a not at this time, or sometimes it is that He has something so much better ahead.

He is Faithful

Thank you so much everyone for the prayers for my housemate’s daughter. She had entered a coma from sepsis and is making a recovery. Her kidneys were back up to approximately 10% and doctors are miffed because not only was she functional but she was speaking.

He is Faithful and He is able. Also another prayer was answered for a friend this week but will not go into detail.

Live, Laugh, Love