prayer request

I have a couple of prayer requests to share. Tomorrow I am scheduled for an MRI and an EEG  due to memory loss and I hate both of them. The sound of an MRI machine sets my nervous system off and causes involuntary movements once that happens it is hard to be still for the EEG. Both of them are going to be very long tests too and I need accurate results. There is a small piece of the back of my brain that is basically dead tissue from the lack of oxygen when I was in a coma in high school and we are making sure that is stable and checking for seizure activity.

**if the results of these tests are normal then I will be admitted to the hospital for a week long video monitoring EEG just in case we are missing small signs. obviously I would be thrilled to do that one.**

Also, due to Christmas I will be missing infusions, I will not get another one until Tuesday which is a huge stretch and I do not know how my body will react to that.

I have a lot of anxiety about all of this stuff going on and could use prayers for peace and strength to keep it together.

update

 I feel like my head is spinning whenever I go to update this thing. Sometimes I feel like I am just stumbling through everyday life in a haze. A song came on the radio the other day that gave me a reality check to digest. . Here is some of the lyrics you can youtube if you want to hear it all.

I need to hear You now
I need to know it's You
I'm standing on Your promises
I know Your Word is true
You're bigger than what I see
It's You in exchange for me
'Cause even the impossible can be reality
 I wanna cling to You Jesus
 hanging on your every breath
So let Your kingdom come
And let Your will be done
Here on the earth
Just like it is in heaven
God let Your kingdom come
Help my unbelief God
Jesus I believe - big daddy weave jesus I believe

Jesus is big enough to handle all of my life.

The life I always imagined with all of my hopes and dreams fulfilled does not look like this. Turning 26 set off my depression and began my haze of discontentment. I know I don't need any of that to be happy but I struggle with putting my life and my purpose in God's hands. I don't know why God is allowing me to go through all of this pain with what feels like one blow after the next but He is and He is God and His plan will always be for my good and His glory even though to me it feels like it's falling apart.

Nothing falls apart in the hands of the one who created you. With God even the impossible can be reality. The impossible feeling I have when I begin to feel like I am hopeless and I will never get better and life sucks is not real. It's a real feeling but not a fact, Satan is really good at getting us to blend the two of those. Once blended they often lead to despair because I have lost my focus on facts. The fact is I can only find complete happiness and contentment in Jesus. I will not find it in a certain doctor, a certain treatment, a family of my own or even in complete healing. If God healed me right now I can say in honesty I would still be unhappy and discontent. Help my unbelief God. Help me believe you are my life, my all, everything I could ever dream of, every bit of my happiness, and my hope. All I could ever imagine. Help me.

emotions

Being sick like this produces a whole lot of different emotions at different times. Today I am just sad and slightly defeated--which I feel super guilty about. I hate having to go to the infusion center everyday but yet I know it was an answer to prayer and a blessing God provided when we didn't think things were going to work out. This is why I feel so guilty for feeling like I do.

I am longing for my life back. I want to go back to before all this. Back to the times when work and moving out were my achievements. I never would imagined being an almost 26 year old, on disability and debilitated. I guess God has other plans for me but I'm going to be blunt and real in saying I don't like it. I know God gives and takes away and is still Lord over it all and He wants everything for my good and for His glory. It is just hard to see that in the middle of the pain and heartbreak.

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I know the root of this is my identity. What AM I REALLY PUTTING MY IDENTITY AND HOPE IN? Doctors, treatments, medications, social status, functionality, friends, money, healing, joy, happiness, self-reliance, finding a husband, a family, friends, and abilities?

Honestly, all of the above. I know I have to chisel those away to get to the only way in which any sort of healing can begin. It begins with the blood of Jesus Christ that saved me and sustains me to this day. There is safety in the hands of God. There is nothing but heartbreak in what I listed above.  I know this and now the work begins of trusting. Easy to say, hard to do.

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not our home

This is not the end. I will be healed. This pain is not forever. God is good even when we don't understand His ways. This all has not played out like I expected it too but God's pulling me through and for that I am thankful. I could not be in better hands.

Blessings - Laura Story (with lyrics)

I finally have some good news to share with everyone! I got a call from my primary care and he said he spoke with a heart doctor that I saw in the past who at the time  would not take me as long as I had this port and feeding tube. My primary spoke with the heart doctor again and it turns out that he has been working with the doctor who diagnosed me and she is a big support on infusions. The heart doctor I saw now believes in infusions for certain cases BUT he is uncomfortable with me doing it in my home.

He was able to get me set up with the infusion center at Christian hospital Northeast! The hard part is I have to go to the center every day for around 2 hours while the saline infuses. Rides are going to be a huge issue for me. My first one is on Monday at 9am and at that point I will learn more about the process and the different times that are available. Although, this is not ideal I am so thankful for God’s faithfulness and this is a huge blessing and answer to prayer. It didn’t play out like I expected and I know going to the center daily is going to be hard but God will work it all out. He is faithful.

                                                                  We pray for wisdom

Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

This song has been on my mind all day long, it is a good reminder of the truths that can be found in hardship.

the whole story of what you are praying for

I know I have a lot of people praying for me and I was convicted to share what I need prayers for. So this is my story.

As you may or may not known, I was put on pallitative care because I have exhausted all treatment options. Well, that went really well at first, they got my pain under control and were really supportive but then it fell apart. I got an email from them saying that they have to prove that I am in pain in order to do my pain meds and since my pain is like “invisible illness” they cannot prove it and told me they will no longer fill anything and I have to go to my primary care for meds not them.

Here is the thing…my primary care sent me to them for pain management because that is what they do. Comfort measures. Primary care does not do that. My medications were stopped immediately and you are supposed to wean off of them and as my primary did say “they cannot just stop them all of a sudden” I called pallitative care stating that they cannot just stop it without giving me time to find a new doctor. I was told I was wrong. I called again and asked for management to call me. That took 2 days. She called and said I am still in their care and looking at my records she couldn’t see where anything I just wrote occurred and said she would do investigating and speak with the doctor and call me the following day.

Surprise surprise nobody called. While I was dealing with that I also got stuck in the middle of my primary and neurologist disputing what to do because they both claim it is the other individuals job to figure out how to help. Nobody wants to do anything. I did an evaluation with a different pallitative care but no doctor will cooperate. I have communicated with 3 other companies and I am getting turned down everywhere. My doctors are giving up because they don’t know how to treat my severe case and I can’t find new ones that are willing to try.

My last effort is trying a pain managemnt doctor vs pallitative. I have seen and/or spoken with 5 of them and they will not take me as a patient. Right now I am waiting to hear back from washington university and it’s the last lead I have.I am not in a good situation here. Ever since it was stopped I have already landed in the hospital for 3 days, I don’t know how my body is going to keep reacting.

Also the HUGE concern is that if the original pallitative care company drops me as a patient I loose my IV fluids. It was hard enough to get them to sign of on fluids in the first place and my other doctors refuse. That could get bad really fast. They also are saying I have to have an electrophysiologist to manage all this. 6 of them later…”they can’t help me”. Yeah I would be glad to have them manage it if you can find one to take me. What am I supposed to do?!

All of this leaves me without a willing physician to turn to since nobody wants to touch my case anymore, the potential for loosing fluids and making my blood pressure plummet is scary, and I could end up in and out of hospitals again for pain management. I would appreciate prayers for this last lead with Washington University.

faith

I am fairly sure my dad has told me "you gotta keep trusting" like 5 times a day for a week. My hysterical breakdowns are frequent these days. So is me saying I don't understand what God is doing, like what in the world is your plan here cause I am not so sure I like this one. I cannot even explain what I am going through right now, it's like walking in a pitch black tunnel just waiting for the light. This tunnel walk involves no light right now and it is so heartbreaking.

BUT


They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

My faith is lacking but I'm clinging to it because it is my only hope, my only chance at seeing that light, my only source of strength. My everything. With this knowledge I do not give up but let me tell you it is so hard not to loose that faith! Really really hard.

crushed, scared, helpless

for those that have been following my messy life, I wanted to update you on my situation.

My current palliative care service all of a sudden said that they will not be giving me any more pain medications because the  medical director physician changed his mind on giving me anything since my pain can't be proven (INVISIBLE ILLNESS PEOPLE ARE UNABLE TO GET HELP I GUESS) so the FDA "could"  look into it and the doctor does not believe my symptoms are that bad and require palliative care. pffttt

 (I don't get why this is happening right now considering they have been prescribing it for months) 

They tried to pawn it off on my primary but get this. MY PRIMARY IS WHY WE DID PALLITATIVE CARE IN THE FIRST PLACE SO I CAN GET HELP WITH PAIN AND OTHER VARIOUS THINGS.

I just spoke with the primary and it is true he will not fill anything because palliative is supposed to do it. That's why he sent me to them in the first place.

PROBLEM: the "comfort measures" aren't happening anymore so I have nothing to take for the severe migraines and other things. Everything was  ripped away from me and unfortunately without home meds it is very likely I will have to start going to ER's and having hospital stays for pain control all over again like I had to do in the past. I don't want to go through that again. Like really don't want to do that.

My last resort is a longshot but we are going to try it anyway. I am switching companies and going to SSM palliative care to see if they can help and are willing. My primary is sending a referral and I ask you to pray that it gets done in a timely fashion and the big prayer request is THAT THEY WILL ACCEPT MY CASE AND SEE THE NEED.

words cannot describe how I feel right now. I have been fighting this disease for almost 5 years now and I am tired. I am tired of the "I can't help you" answers, I am tired of feeling like a drug seeker asking for medications, I am tired of nobody believing my symptoms are bad because they can't see them, I am tired of being pawned from doctor to doctor, I am tired of having to rely on everyone for everything and so much more. I need all the prayers I can get.

going under

I haven't written in awhile because words just are not happening. I am going to try but if it doesn't make sense just pretend it does. mk. The decline was that I had two seizures, one day apart with no known trigger. My first seizure was witnessed and in God's perfect timing I had a friend over who knew what to do. She put me on my side and called my dad who was just running up to Walgreens really quick. I kept going in and out of consciousness for awhile. It is the weirdest feeling when you come to and everyone is staring at you and you have NO IDEA what is going on. I remember asking my dad what happened, he answered and the out again I went. It took awhile for me to compose myself but I came out of it and contacted my neurologist who said it is just going to happen at random with my syndrome and I am already on seizure medicine so it must have been a fluke and not to worry about it.

No fluke. The day after I woke up super confused and realized that my tongue was hurting and I went to look at it in the mirror and noticed spit up on my face. I had another seizure in the night and bit my tongue fairly hard but I am blessed to have woken up in the first place, God isn't done with me yet obviously. There are symptoms that occur after a seizure but in my previous ones it all was gone within about 24 hours. This is a different story. My usual symptoms include headaches, confusion, drowsiness, muscle soreness, memory loss, and weakness. Like I said this all usually stops within 24hrs but these symptoms are being persistent. My muscles lock up so bad that at times I cannot even turn my head and that escalates to an increase in the frequency and intensity of my migraines.

So I made an appointment and went to see my neurologist and he said that they were very violent seizures and the muscle pain and increase in migraines could last for months. We discussed pain management and I left that appointment feeling so hopeful that he will set everything straight and send letters to those doctors that are taking the hands off approach or not palliating like they should. Great right?

no. in typical doctor world what he said to my face is not what he put in my chart. He didn't write anything about managing my pain like we talked about or sending letters to the doctors saying they need to step up. Seriously he just put that we are increasing my seizure medication and to follow up with pain management. My heart is in a million pieces right now. I DON'T HAVE A PAIN MANAGEMENT DOCTOR BECAUSE 4 OF THEY STATED THEY CANNOT HELP ME. This is also why I went on palliative care because I ran out of options.  The problem is there is some reluctance to do things and I thought after this visit it would be worked out. I talked to my palliative care nurse for 30 minutes last night and she will speak with the doctor but it is not likely that anything will be done. This syndrome is relentless. I will continue to have pain popping up in various severities and places because that is what goes along with the ride of my syndrome.

unbiased comfort measures is what I thought would happen because it's palliative so it should be do whatever it takes regardless of my age or any other factor but it's not working out for me. I'm defeated. With God I do have hope though because He is all that is keeping me from going under.

overdue update

This last month ish is really teaching me that  all of my hope needs to come from God. I'm sure most people can remember a time when it feels like your whole life is falling apart and you can only sit back and watch it go down. I'm facing that right now, one day I want to have a cheerful blog post for  you all but that just isn't going to happen right now, life is hard.

About a month ago I saw the director of dermatology with Washington university and he told me he doesn't know what my issues are but he said we will figure it out and he said he will not pawn me off on another doctor because we will figure it out it just takes time. I left that visit feeling very hopeful that someone will really help me. He ordered some tests and stated we will start with the basics and then work from there. Sounds fantastic. I got a boost of hope.

Well, I got a call that I wasn't expecting and my heart dropped as the nurse proceeds to tell me that all the test found nothing other than confirmation that I have dysautonomia and that he doesn't know what is going on but he can't help me and told me to follow up with the immunologist. I told him that the immunologist has no clue and can't help me so sending me there is pointless. He just said he doesn't even have any doctor to send me too or any treatment measures to take so I don't need to see either one again.

To be honest I am devastated. I am all the way back at square one. As if that wasn't enough I contacted my pallitative care nurse to see if we can manage my pain better and I was told that the doctor is against helping me manage it better. Apparently from the very beginning he has said he wants to take me off ALL OF MY MEDICATIONS because he doesn't "know if we are treating the syndrome or the side effects from the medications I am on" ... he said "I don't understand your resistance to stopping meds that could possibly make you worse in the long run. I believe we all are after the same goal, to improve your health and quality of life."

I want improvement but I tried to go off things and it got bad fast and I am not doing that again. He seems to think I will "get better" . The problem is my body doesn't respond to things like everyone else does and this is why I am on as many medications as I am. It's been a trial and error process for years and right now I am doing better on the medications I am currently on than I was before. My concern in my self advocacy is that this condition is not well known and is very treatment resistant and I have exhausted those. That's why I was sent to palliative care in the first place. Without a miracle all options of truly making a major good swing in my health and "getting better" have been tried through a very very long 4 years of fighting to get me to where I am so after a discussion with the pallitative care nurse it looks like I have convinced them to just keep doing what we are doing, not what I was hoping for but I will take what I can get.

Even though I am confused, frusterated, lost, and discouraged I know God is doing things for His glory and I don't need answers to trust. My heart is not in it yet but I am working on that. p.s- God gave me a glimpse of His love today because it looks like my insurance company is admitting that they messed up and all of my bills are their responsibility so it would appear that we owe NOTHING. Happy tears went down today and God is good, I got my answer to a prayer request I have been depressed over for months. The war is already won.

"Day after day, night after night
I will remember, You're with me in this fight
Although the battle, it rages on
The war is already won
I know the war is already won

Surely my God is the strength of my soul
Your love defends me, Your love defends me
And when I feel like I'm all alone
Your love defends me, Your love defends me"-Matt Maher

struggling-prayers needed(novel warning)

For a multitude of reasons I woke up this morning just feeling lost. I don't know what I'm doing in life, what God is doing with me, what my future holds, and I'm battling with the "how did I get here..again?" sadness and defeat.  I feel so alone. Not the kind of alone from a lack of physical/prayer support  but the alone in a world I never wanted to enter, alone in the pain that no physical support could even touch, the alone in my day to day fiasco of keeping myself alive, the alone in the fact that nobody can truly understand how hard this life of mine is day by day. It's brutal in every possible way.


I feel like I'm not living but just existing.  I am caught up in the fact that my hopes and dreams appear to just be fading away. Everything feels like it's fading. It's just me and God. I know He is always me and God but the feeling of it is heavy hearted right now.(don't judge me) I know He is all I need and He will get me through this, I am just stumbling through life at the moment. It is an odd feeling when you reach the point of realization and reality that God is truly 100% ALL you have. Yes, I know He is all anyone has but the feelings that come along for the ride really mess with you.


Unless God decides to do a miracle (which would be #5,000 in the book for me!) this is my reality. I am still pretending it's not. My dad and I were talking and he used the phrase "disabled adult" and I almost lost it I don't want that label. It feels so final. Just typing it was hard. How do you even begin to wrap your brain (what's left of it lol)  around the fact that this might be it. I might be stuck like this forever. It scares me. I don't even know what it feels like to be healthy anymore, I can put on a brave face like at church and stuff even though it feels like my heart is crumbling. Someone please tell me where my life went.


I lost my ability to drive, my ability to go places or be outside, my ability to be left alone and my ability to pretty much do  everything that I loved. Just poof gone. I now spend my time in bed with tubes going everywhere to keep me alive. Again how did I get here?! I don't know but it is so defeating. Please God don't let this be my life forever and if you choose not to you gotta carry me because I got nothin'.

burdens and expectations

I think (for me) the emotional/mental toll of being chronically ill is by far greater than my physical symptoms. It beats you down to levels you didn't know existed. It provides the perfect opening for Fear, hopelessness, sadness, depression and anxiety to work it's way in and create a big mess that nobody can see. It's a prime example of Satan at work.


 I could not tell you how many nights I have spent in tears because just the thought of facing another day overtakes me.  The mental knowledge that I may not get better here on earth is so defeating that sometimes I want to throw in the towel and curl up in a ball forever so I don't have to face it. No matter how many times I am told that I am not a burden the feeling just doesn't go away.


I expect so much out of myself  when deep down I know I will never meet these expectations I hold onto. This mindset leads to despair. (I wouldn't recommend it) I get super frustrated about not being able to do the little things that seem so simple so I attempt them anyway. My dad says the same thing every time I have to text him that I am stuck on the floor. 1. are we making poor choices again? followed by 2. now why did you think you could do ________ in the first place?! 


 I long to be able to do the things that someone who's 25 can do and I struggle so much with loosing my independence that I attempt my poor choices anyway. Then I get myself stuck. It's a daily battle in more ways than one. It's hard to see how this is for my good but Jesus promised it is so I try to step back and re-focus myself toward the TRUTHS we are promised by a God who is way bigger than any illness and can restore my heart.


This has been, is, and will always be my favorite verse of hope.
 Jeremiah 29:11

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

God's will

I have heard people in trials say "thy will be done" and I have always thought that there is no way that in the midst of so much hurt one could say that AND MEAN IT. It's an act of complete surrender that I haven't chosen to give up yet apparently . It boils down to fear (at least for me anyway) as odd as it may sound, I'm scared of what happens if I let go. It's sin and a lack of trust, I know.


Giving everything up and basically telling God to do what is in His will for me; even if I don't like how it feels is scary because I don't know what that is, I don't know what God's plan for me is and I struggle with the idea that maybe ALL THIS really is His plan. The thought of it causes me to think that I just asked God to give me the hard "do you trust me" tests. I already feel these tests being thrown at me left and right and any increase in them feels like more than I can handle.


I can't handle it. It's already hard enough. I'm struggling with it but in these moments I have to go back to the basics and remind myself that God is good and everything He allows is for my good even though I don't understand it and so far I am not a fan of this plan but that doesn't change the fact that it is for my good. He has carried me this far so why would He drop me now. That knowledge is comforting to me through my battles. I may be far from being able to say and mean "thy will be done" but my prayer for myself is that someday God will help me get there and I know He will.

 Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

extend that grace

My life is intimidating. I get it. I'm intimidated of  myself sometimes.




What do you say to someone who's sick every.single.day that isn't awkward? What do you do when you cannot relate to one's suffering? How do you approach talking about your happy times when in the company of the always ill? Can you share your "petty" comparing prayer requests without guilt? Does every conversation have to begin with "how are you feeling?" Does illness have to come up in every conversation? Are you freaked out by medical equipment?






 I know these things can race through your brain when you are healthy. In honesty, I cannot blame you for it, it makes sense so I will extend that grace to you who do what you can to avoid even being in these encounters at all. I understand it but let me help you.






1. I don't expect you to go too far from your comfort zone. If you are uncomfortable with the thought of taking me places, please know I don't expect you to do that.


2. If you are afraid of me passing out in your company it is ok to say you don't want to be alone in the vicinity.


3. If medical equipment freaks you out please note I don't need you to touch it. (besides wheelchairs)


4. I am prepared for my surroundings. If I am out and about with people who haven't been around and even on occasion with those that have I will give you the rundown of "what to do if"


5. scared that in the moment you won't remember the rundown? I have paper copies of that along with all medications, emergency contacts, all the things that a paramedic would need.
6.Talk to me. It's simple. Let me answer the above questions for you.

• It's not awkward unless you make it awkward. Once again just talk to me about whatever.
• When you cannot relate to one's suffering you listen, Please realize I don't expect you to relate so take that load off also, I don't want you to understand because if you did it would mean you were going through this too and nobody wants that. Just listen to me, it's all I ask. 
• talking about your happy times is ok even though it makes me a little sad sometimes that does not mean I don't want to hear about it at all.
• SHARE YOUR DARN PRAYER REQUESTS puhlease. pain, suffering, hardship, it's all HARD so the next time you hold back because my issues are "bigger than yours" please slap yourself 5 times.
• Please don't forget I am still human. My daily life might look different than yours but don't let that intimidate you. I have the same thoughts, emotions, and issues as anybody else.

The moral of the story is that you can communicate with me like you would with anybody else. The worst thing you can do is pull away. Don't let my list intimidate you either. It's okay if you happen to slip up, I won't hate you. Grace is a thing. I hope this helps you feel more comfortable. A lot of people just don't know what to say but now you know.

vulnerable

I have not written in a long time because sometimes I just don't have the words needed to form any kind of a sentence. Also, I rarely feel self conscious about my illness and I usually have no problem dumping my heart out but that just hasn't been the case lately. I have found myself feeling overwhelmingly vulnerable about everything. This fact has changed my thought patterns on everyday life.


It gives sin a chance to cultivate. Instead of feeling happy for others I caught myself slipping into the comparison game. I am finding it particularly hard to sit back and watch as others celebrate "big life events" without self pity. My heart longs to be normal and follow the usual path of marriage and starting a family. That is obviously not happening and I don't know if it ever will, just because it is the desire of my heart in my eyes doesn't mean it is God's desire for me. Those don't match up perfectly because mine is feelings based which can be led astray.


But my feelings are still real. I'm sure you can understand why I struggle. It's the feeling of "but I want ______ too" Comparison and discontentment with the path laid out for me can consume me and in all honesty it has been. I don't see a way out that will meet my hopes and dreams. I don't want to be sick anymore, I want to move on and leave this all behind me. I mourn the loss of what I imagined my life would look like. I struggle with questioning what God is doing here in my mourning. It's hard.


Knowing that my heart is still in the hands of Jesus regardless of how torn up it may be and as I let truths slide back into my consumed heart, I can only pray that God will give me the strength and comfort I need to shape my heart.

"This is not the place I thought I’d be
This is not the road I had in mind in front of me
Don’t see the reason, and sometimes I’m scared
But I know you’re leading, even when I don’t know where

So I’ll put one foot in front of the other
Take one breath and then take another
Lead the way, God, I’m gonna follow you
‘Cause you’re faithful every moment
When it’s easy, when it isn’t
You’ve never led me wrong, never let go
Your love is strong and your arms still hold me
Right here to forever
Like a child and like a treasure
From the start to the end, through the ups and downs
You were with me then, and you’re with me now"-Mallory hope

ohh yesterday

I have had a migraine for a whole month and it is brutal. I contacted my neurologist office to see if there was anything I could do besides sit in an ER for way too many hours and I never heard back even after 3 emails and 4 phone calls. My current headache medication  is just not cutting it for some reason, it helps make it more tolerable but after 4ish hours it is back in full force.


I couldn't take it and went to an urgent care who was so understanding and helpful it was amazing. She said that my doctor should give me something stronger because this was bad and could have been stopped at home. My pain levels were so high that my pupils were completely blown and did not react to light, I got a fever because my messed up body does not know what it's doing and it's pain response is fevers, and my blood pressure was actually high from pain.


They ended up giving me IV morphine and two injections of Benadryl and reglan. It helped a lot and made me feel like I could  get on top of the pain. Well, no. It's back. I crankily contacted the office manager for my doctor who doesn't answer me and they want me to come in today and do a group discussion to resolve issues. Please pray this goes well and something can be worked out.

breaking point. We all have them.

I need your prayers for peace, patience, and comfort big time right  now. I'm just broken. Here is the saga.


Apparently once you hit the 2 year disability point you are forced into Medicare part A but part B is optional. When I "got" medicare there was literally just an insurance card in the envelope, no explanation of things, just the card and the option to join part B which you have to pay for or decline. Because I am under my dad's insurance it seemed silly to pay for it so I declined. Nobody told me what happens when you decline part B.


It's bad. really bad. Due to the small size of my dad's job they require Medicare to be primary instead of my dad's employment one which. I also knew nothing about that until the bills rolled in. I should have looked into it but I didn't. Here is the situation:


I have been getting bills from various things and I was so confused because the deductible on my dad's insurance had been met so we shouldn't owe anything. I thought. I have spent weeks calling around and trying to figure out what the deal was. Today I learned this:


You have Medicare part A and Anthem. Medicare part A is for hospital benefits only. By not having Medicare part B, Anthem is processing your claims and paying as secondary, we are taking contractual adjustments, the balance that you are being billed is what Medicare part B would have paid. Since you do not have Medicare part B, that balance is your responsibility.


Now why was I not informed of the consequences of not taking B?! My dad made a phone call for me and Anthem says we should have gotten an explanation letter, I did not and they can't even find it in their system. I spoke with the social security department and they said there is not a letter, they don't "do that" mmmhmmm


So where does that leave me? hibernating. forever.  the thing is I have just one way to try to enroll in part B but it is a longshot. Social security is making me fill out papers and do some stuff to attempt getting a special disability enrollment period where I would have part B in July if it works, if it is declined then I have to wait for the next enrollment period in January. JANUARY.


As of this moment without part B all doctor visits and anything other than being hospitalized falls on us to cover whatever amount remains after anthem did what they would do which isn't much. I already have a pile of bills that will be on us and I have a few doctor appointments coming up that will make that pile larger. If I can get part B in July it would help a lot as far as going forward but what damage has already been done is there. On us.


I now will be spending next week calling billing departments to see if I can get anything written off because of my fixed income and the reality of paying everything isn't possible for me so I need to see if they have payment plans and just whatever to help. I can't even handle the thought of having these pile up until January if they don't give me the special enrollment period. Right now I can barely handle the thought of any of it. I don't know  what is going to happen but this is where I need the prayers right now to go to. I feel so overwhelmed and broken. I know God has a plan for all of this and that is the only thing keeping me together. Jesus. Where my help comes from. Where faith enters the picture. Where miracles happen.

"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can--mercy me

theme faithful

It has been a really rough week  month for me,  I'm tired of being sick and tired and that little pesky defeat thing just always finds a way to creep in. I am desperately seeking redemption from the extreme guilt I am carrying around. Like hello God JUST did a whole pile of miracles on my behalf . I am thankful for these miracles but apparently that's not good enough for me. He just rescued me when I felt like I could go no farther, showing me His never ending faithfulness and devotion to me and I want more..


This is kind of embarrassing to say but I will do it anyway. It's kind of like ok thank you God but um I'm not content because yeah you enabled my treatments and all that but you didn't take it away and that is what I REALLY wanted so I am going to go visit pity party land again instead of rejoicing in your devotion.


The level of devotion here is obviously not equal. I struggle and fail. My heart needs some work I would say but faith abounds with Jesus and He is pretty darn good at changing hearts. There is hope.





 I opened up my prayer journal in desperate need of Jesus to put these shattered pieces of my heart and life back together and this is the page I opened up to: I have no more words.

mmmmm today

I knew today was going to be tough but I wasn't expecting this tough.  It feels like "if it could go wrong it will" and I am battling with the feeling of pure defeat .. I woke up so sickly and it all went downhill from there.


My nurse came to "discharge me" today and if that isn't enough she went to put the new needle in and it wouldn't go in right 7 times. Yes 7. I even tried once and it wouldn't go and lets just say these needles ain't tiny. She gave up and after letting it heal a bit I was finally able to get one in after 2 tries . pain. pain. pain. I have it in but it's temperamental leaving me in a spot where despite my allergy I HAD to wear tegaderm to keep it stable. I have leftover supplies that I am using to see how far I can get without home health, I already know how to change the needles and such so I will be doing that myself every week. If this needle I put will stay working that would be great. What also would be great is if I don't react to tegaderm.. All in a perfect world (Jesus Come Quickly, pleaseeee)

I then went to see the dermatologist who still won't do a biopsy and she is sending me off to a clinical study thing at wash u called the itch center. This burning and tingling and redness is APPARENTLY nothing but my normal skin tone and the pins and needles feeling that takes over my entire body and is oh so painful has no origin and this clinic might have an idea to make me more comfortable because "none of this is medical"...pain is real though. Imagine the pins and needles that occur when a limb falls asleep..take that and put it over your entire body even the eyeballs.




please pray that this needle will continue to work, my pain to be under control, and that my blood pressures and heart rates won't get too bad because my fluid supply is limited and if yesterday is any indication of how my body will handle it, it's not pretty. BP  80/40ish Pulse: 140
POTS-3
ME 0000000

verses for the valley--possibly my final update for right now

well this is it... I got my FINAL notice that my nurse will be here on Thursday for me to fill out infusion discharge paperwork because I don't have an "acceptable" doctor treating me and giving orders. I have done everything I can to fight it but It's happening and there is nothing I can do about it. I have spent so many hours calling all over the place to get someone to help me and with each call came the blow of we can't help you. In the last week I have called 15 physicians. I have even called "find a doctor" phone lines and no go. Every time I think someone is going to help it gets shot down. Needless to say I feel pretty discouraged (that word doesn't even cut it right now) because no doctor=no treatments.


THERE IS SOMETHING YOU CAN DO TO HELP ME though. I need your go to bible verses when it feels like life is crashing down and you are dangling with no where to turn. Also, if you are comfortable doing it I could really use your testimonies/examples of God's faithfulness and providence that brought you through some hard times. or in general really. I am so thankful for this church and everything they do to support me through prayers, visits, phone calls, rides,  and the most important thing of drawing me back to Jesus when I feel abandoned.


I am also thankful for those that call me randomly (like today RIGHT when I needed it most)  and share with me the trials they faced or continue to face and how God worked in their lives in providential ways.


please note that I might not always answer the phone or I could decline your offers to visit if I feel bad. Please don't let that stop you from asking or calling just don't take it offensively if I decline the day or don't answer the phone. I find some comfort in the fact that you are thinking about me enough to ask. You are however more than welcome to leave me voicemails of encouragement, hope, and peace or even leave me a prayer to keep me God focused cause that my friends is a hard thing to maintain.

update

God works in mysterious ways that don't make any sense to us. I got a call from home health and they presented me with 3 choices:


1. go to the ER and demand that they hook me up with a doctor that will sign for my infusions--so not a fan of that one and I doubt they would know who to send me to since everybody else didn't


2. call the infusion company and try to get one of their doctors to do it---did that and no go awhile ago


3. They provided me with the name of the doctor who signs off on saline infusion therapy for their other POTS patients.


I jumped at the possibility of #3 settling it all. I called just to be told he wasn't taking new patients but they have residents in the practice that can consult with him when needed. I have an appointment to see one of those on the 22nd so you can be praying that works out.


I then called my home health department and left a voicemail stating I had this appointment scheduled and I never heard back so for now it would appear that they will continue services until that point. I could be totally wrong though so I am not assuming I am in the clear quite yet. I could also encounter a bunch of insurance issues that could be a roadblock as well. Literally, God only knows.


I did finally get into see an immunologist today and this doctor is fantastic. After explaining my skin issues and what led to them he was so confused and said he didn't think he could help me because it's not plausible to test for every part that goes into various adhesives. I explained how my face turn red and he said this is very interesting and because I am only "allergic" on my upper chest but nowhere else he walked over and scratched his pen on my skin and almost instantly a welt began to form. He made me stop talking so he could think and then said he really thinks the cells that compose that are a group of mast cells.


This would make sense then that it's not a contact allergy because that would not be isolated to one spot so the reaction I have is from damage or irritation to the skin itself not an allergen. Everything began to add up because I first developed this issue during a port surgery which is major damage to the skin obviously and every time my port needle is changed I have issues as well. The tegaderm was the suspect because it reacted but what really is going on is it kind of tugs on my skin damaging it and when I take it off it is even more damaging to the skin.


He said he knows nothing about Dysautonomia so he is going to do a lot of research on my situation but he is determined to figure this out because it is a challenge and apparently he likes those. He hooked me up with a dermatologist to get my skin biopsied and tested for mast cell congregation and we will go from there but all of the symptoms add up. I have this appointment on THURSDAY at 3:30 and I ask for your prayers because I am a tad nervous about it.


"Let every heartbreak and every scar be a picture that reminds you who has carried you this far Cause love sees farther than you ever could and In this moment heaven's working everything for your good"-DG

crushed, shattered, defeated, all the things

I have been struggling to put into words the news I got today but here goes nothing. Due to an insurance saga my home health nurses that manage my port and fluids had to re-open my case.  I was informed a week ago that I need a different doctor to sign for my infusions because the doctor who put in the order originally now works at the VA hospital 2 hours away. SSM went ahead and called all of my providers including palliative care and they ALL refused to do it because they "aren't comfortable ordering that she needs to see an electrophysiologist"

I have thus far seen 6 electrophysiologists  and I was told by all of them that they cannot help me and will not keep me as a patient as long as I am doing IV fluids. Pallitative care gave me a couple recommendations but the odds of them agreeing to sign off on the orders is close to 0. My original doctor that moved even said I will probably not find someone who will agree to it. It doesn't seem to matter when I tell them that fluids changed everything for me, they helped me more than any of my medications ever have.

Where does this leave me? My old doctor said I can go to the infusion center at St.Marys where she has privileges but I am not sure how that works because I currently get 500ml twice a day and I can't move into the infusion center. So daily is off the table. I don't know what is on the table besides my entire life.

 I am scared. My heart is so damaged from defeat. As tough as I seem to be I have my breaking points and this is a HUGE one. I am scared of  passing out 6 times a day, I am scared my heart rate won't stabilize, I am scared doctor's won't believe me, I am scared of  hitting my head and bleeding out and so much more. I am kind of in shock at the moment and trying to process this but I need all the prayers I can get right now.

I am not ready for symptom roulette.

A little broken

Today has been nothing short of a nightmare that I can't run away from and my faith is taking a hit. I'm at my breaking point. Just when I feel like things are going to get better it all seems to fall apart on me. I don't know if it is just because I'm still learning how it works but this palliative care thing is not going like I expected. I was so excited and peaceful over it because it seems like for the first time in this long journey I was going to have someone who believes me and will advocate for me and do what it takes to manage my symptoms.  I didn't feel like a drug seeker and they didn't treat me as one for once and I felt more hope than I have felt in awhile.


Well, all of that is crashing down on me. They said as far as pain management goes "if I need it then take it and don't worry about the quantity" when I started this program. Music to my ears right there!!
So I did... and now apparently I am  drug seeking because I took more than originally prescribed. Yes, like I was told. durp durp. 


 They also said they will manage correspondence with other doctors with a COMFORT FOCUS regardless of what comfort measures may need to be used because they are there to help me be as comfortable as possible. These words were exactly what I needed to hear. I have been fighting an incurable disease for years now and I am so far beyond weary. It felt like a miracle. Didn't last long.


I guess I'm in the fight again. I was born fighting for my life, my junior and senior years of high school were spent in a hospital fighting for someone to believe me and help me as I practically lived there, I fought through both and I conquered with Jesus by my side.  I went to school and worked for 3 years, helping other people fight their own battles and I never imagined I would be the one fighting again for myself but it shows how not in control I am. If there is anything that I learned the last few years, it's surrender. Learning and doing are two separate things. It is so hard to do despite my knowledge and experience of God's faithfulness but I will keep at it until Jesus takes me home.

"They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul 

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone"--mercy me even if

valleys

The last few months have been hard and they still are, I won't deny that I have pulled the "give up" card many times but especially the last month. Every word of this song sums up my thoughts in a nice little package and I could post it by itself but that's so impersonal.


I caught myself wondering if God could see me down here in my self induced lonely valley afraid and crushed. It just feels impossible to lay this life down. How do you lay down something so big and scary? Then while listening to this on repeat for days I got my answer. "let him show you how you  can lay this down" I can't and will never be able to lay this down but I know someone who can enable me to do it in faith. "There's a place where fear has to face the God you know" yeah that one God I know...that one who can see me and keep me from going under. The one who can make beauty from ashes.  "He is breathing on your dry bones and there will be dancing, There will be beauty where beauty was ash and stone. This much I know"


The only God who can sustain me, comfort me, save me, and help me. My soul needs that help. My faith might be thin but I am so in awe of how Faith can be restored when enabled by the source.

surgery is complete-thanks

Well, that was rough. The surgery itself took quite a bit longer than expected so they had to nasal
intubate and do a foley cath part way through the surgery.




I then a spent a couple of hours in recovery tackling my drug resistant self. I think I was conscious for maybe 1 hour out of three to wake up because I am always bad with that. It took awhile for me to get the pain under control but eventually they figured out a good combo and I was sent to recovery #2


(kind of like a step down unit) where I stayed for almost an hour before being released.


I am so thankful that it is over but we all know we have to have side effects of course, I have a very sore throat and a bleeding nose from the nasal intubation, urinary retention, stitches in my mouth, and coughing up the blood from my throat.


I am weak (as usual) and not very steady on my feet  and woozy at times. I will be calling my surgeons office tomorrow because my current pain medication is barely effective. Story of my life.










I want to thank everyone for the prayers that began during my battle in 2015 and through the  journey that has forever changed my life. Your support through the ups and downs, spending nights in ER's, providing transportation, financial support, advice, company, phone calls, visits basically all the little things that remind me that I  am still very alive and not just existing and taking up oxygen. Your support has shown me that I have worth and God can still use me even if I leave my bed twice in a day. He can use my sorrow and pain and the tears that at times don't stop for His glory and for other people, He can use me as I peacefully..or not... pass out on the floor at walgreens, because God caught me in His arms and protected me,  He provides me with the ability (I fail at this like everyday of my life ) to witness to all 5 billion doctors and medical staff I have seen. We all get so many chances to reach out to others and save the lost from the depths of hell and we fail. We fail the lost, we fail ourselves, and we fail GOD. Thankfully He has the power to redeem, save and restore DESPITE US. A MERCY WE CAN'T COMPREHEND AND A GOOD GOOD FATHER.

mixed emotions

My immunologist called and said the good news is I don't have Mastocytosis because apparently it is a very deadly disease. So that is a plus. Dying is usually frowned upon. BUT we still don't know what my body is trying and failing at doing. so my next step is seeing a  SLU dermatologist/immunologist...I also have 2 heart doctors to make appointments with.

While I am so grateful for the god news I am still in pain for no known reason and I am left with no answers. I just want a diagnosis because you can't do anything without that. This process is really discouraging and just know that sometimes I have to pull away and re-group so if I vanish that is why. Well, outside of some medical emergency but that would spread like wildfire.

My pallitative care nurse saw me yesterday and is just as confused as I am but she said that basically every Wednesday the whole team meets and talks about patients and how they as a company can help and she is putting me at the top of the list ( yay me) She said they will establish a plan and work together to help me out.

lastly, I like the word "team".

peace

 I just saw my immunologist and she said she is not sure exactly what is happening so she drew blood tests for mastocytosis and she is sending me to a clinic with SLU that specializes in this kind of thing. Also, I am banned from tape anywhere close to my chest since tape appears to be a trigger.


I am  asking for your prayers because as you know I have dental surgery on Friday and I am having anxiety issues which only make things worse. . I ask for peace, comfort, and pain control afterwards. I also ask for prayers because there is a chance that having a "wound" in my mouth could trigger a worse bodily attack. but  for this moment I need peace that God has this under control and my worries  are pointless, I just simply need to trust that this is out of my hands and I serve a mighty God who has a plan in all this.

palliative care-NOBODY PANIC

I had my palliative care evaluation today. Let me explain why you don't need to panic. I am not dying, this is not hospice. Two very different things. So stop it.
Palliative care by definition is specialized medical care for people with a serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. I so far have 3 illnesses with no cure and each one carries with it a different set of symptoms. My new care team is composed of my own nurse practitioner...(NP), social worker and a physician they have on staff. They work together with my current doctors on symptom management but they also can prescribe new medications that have the potential of helping me be more comfortable. There main focus is helping me manage all this.
This evaluation could not have gone any better than it did. God has His mighty and gentle hand on my life, guiding me through this journey and it is extra special when you can obviously SEE IT go down. One of my diseases is mast cell activation syndrome which is an autoimmune disease that is not well known and when I said I have an appointment with an immunologist on the 23rd about it my nurse practitioner said she used to work for an immunologist and is familiar with it and the treatment options so we discussed those a little bit  but we won't try any treatments until I see the doctor. BUT SHE KNEW WHAT IT IS GUYS. Providential much?
As we discussed things we had the radio playing in the background to Joy FM and the NP said she loves this station. Something so simple sent a wave of hope and peace over me that I haven't felt in a long time. This is the help I have been waiting for. Someone who loves Jesus and is devoted to making the best of this situation by being "in my corner"  in the medical world. Someone to stick up for me and will do whatever it takes to help and be here for me, even trying new medications that my current doctors won't touch as they are experimental. I have been thrown around to so so so many doctors that either say they can't help me or develop ego's and think  everything I have been doing is all kinds of wrong and should never have happened and they will only accept me as a patient if I do what they say.
Help. I have help jumping through hoops, sifting through doctor opinions, and making educated choices. I have been putting everything I have into being my own advocate and fighting for every part of my life and treatment for so long that I didn't know the toll it was taking on my already fragile body. A weight that I didn't know existed was lifted from me today. It may have taken 3 years for me to begin to give this to God all while I ignored the fact that He has been waiting patiently for me this whole time. My soul was reunited with the God of this valley no thanks to me. Faithful.


Jeremiah 29:11--For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.


He wasn't lying when He said this. He just proved it.  I'm clinging to it right now as I share with you the other part of my day that contains a prayer request. About an hour after they left I got a phone call that my blood work I had drawn the other day came back showing a potential infection somewhere in my body and I have to have further testing tomorrow. I have my pre-op done on Wednesday and I ask for prayer that whatever my body is doing does not prevent me from being cleared.

"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul"--mercy me

 

Decline

I feel like I am in a nightmare that I can't wake up from. The last couple of weeks my health is going in the wrong direction... and with another surgery coming up I have to be cleared by all of my doctors and the pre-op department at mercy on March 15th.

Also, my new port is malfunctioning more than the old one (of course) but my surgeon doesn't think I should have it in the first place. I now have to find a new surgeon who will take my case (takes miracles for all of that)

Nobody really wants to treat me. My old doctor who moved is as close as I get to having a specialist in this field and our communication is spotty. I have no where to turn because when things go wrong I need a specialist to consult with and see me and I don't have one. I have seen so many doctors but none of them agree with my current treatment, they want to pull feeding tubes and take my port out because I don't need it. --they ignore the fact that this treatment is really the only thing that keeps me from passing out all over the place. I can't be doing all that because if I pass out and hit my head there is a good chance that I would  bleed out. My hematologist reminds me of this every 4-6 months because I am high risk.

This leaves me stuck with no doctor to treat this and in these moments where I really need that help and for my specialist doctors to communicate but that is close to impossible. Each doctor only treats it's one body part instead of the thing as a whole. right now I feel so defeated, stressed, sad, and frustrated that I want to give up on all doctors because all they do is send me to another doctor that says they can't help and sends me to a new one who says the same thing. I am just tossed  around but getting nowhere.

I lost it last night. I want all this to go away  but for now this is God's plan for me and I am not fond of it. honestly. It is hard to believe that God's plan for my life is filled with so much suffering. I don't feel like God is here right now but I know He promises not to abandon us and I will cling to that all of the days of my life. God's unbreakable promises are pulling me through this whether I feel it or not.

valentine's

 As a woman who has always been single valentines day does not mean much other than a little sadness thrown in there. I don't know God's plans for me but I want to share with you something that stills my heart just in case you are in the same boat. Valentine's day is that one day where you are obligated to make your significant other feel special. We all like to feel special sometimes.


Guess what? You don't need a significant other to love you.  In God's eyes you are and always will be the most special person that exists, there is no pressure, no dating, and no sadness involved here. He loves you more than any human can and I think it is important to not loose sight of this fact. YOUR HEAVENLY FATHER LOVES YOU MORE THAN YOU CAN FATHOM. That is special. The best kind of special. He is yours and you are his automatically upon belief and will always be no matter what.


Humans can let you down and leave your heart shattered but the love Jesus has for you never fails. It's one of a kind. Having said that we do have feelings and emotions and yeah valentines day is not exactly my favorite holiday but every year for as long as I can remember my dad has returned home from work with not only flowers and gifts for his valentine (my mom) but includes me with my own flowers and chocolate EVERY YEAR. Fathers, I would encourage you to do the same with your own daughter's, it is something that I will always cherish and never forget. Self-esteem is a struggle for me and I am sure for others as well but having that someone regardless of who it is remind you that you are loved no matter what point in life you may be in helps to fill that void that society protocol leaves you with.

doozy of a heart change. The bad, hard way.

I have not written anything in awhile and I think I'm ready now to update. I have had to pull back from the world for awhile now and just go off the grid to regroup and carry on in the fight. I have been and still am struggle more than I have told anyone. This syndrome and all it's oddities, unexplainable symptoms, not believed symptoms and complications is consuming me. I am not even close to content with my life. I have absolutely nothing besides my God. He is sustaining me in my struggle and I would be nothing without him holding my life in His hands and the promises He makes right now. I'm hanging from a Jesus thread.  The only comfort or any sense of peace I have right now is that His thread will NEVER break.


Folks, I have been in a self discovery phase and you know that one content word I used? Yeah to really learn how truly discontent I am has been hard. It starts with the basic stuff that I have dealt with this whole time such as not being able to drive, or be in public alone, not being able to attend church and frankly just not being able to do what I want to do, when I want to do it. independence. That's the always saga of my life that I always grieve over but it has grown and not in the right direction.


The grief list and it's severity has taken off like wildfire. Everything good has become a harsh reminder that is beating down my sense of purpose, self worth, and hope that I put it in the wrong things. I have always been sad that I can't participate or live like I feel I should be at this point but I slowly realized something sneak in that I never thought I would let in. Suddenly, watching people's lives unfold hurt more than it ever has. Not being able to do things became my enemy. Not only was I sad  every time I saw pictures or heard about get together's I didn't even know were taking place, engagements, weddings, babies, family, vacations, friends, jobs and anything and everything good I let bitterness and jealousy sneak in.  Instead of being purely joyful for them I would think "well good for them" and then become bitter because there lives were unfolding just like I have always dreamt and imagined mine would.

God and I have done some battling because I am stubborn and want so many things while He sits there telling with incredible patience that He is the only thing I need. over and over and over again. Wants? you don't need those. Let's try again. I AM ENOUGH. I AM  ENOUGH. I AM. God and my own "plans" collide. Slowly and still a work in progress He is teaching me that I do not need a man for life to continue. I don't need a baby in order to be happy. I do not need to leave my bed to find joy. I do not need to attend events in order to find purpose.  EVERYTHING I COULD EVER WANT OR NEED IS IN THE HANDS THAT CREATED OUR HEARTS DESIRES. Yes, I am still and will continue to grieve losses and that my friends is okay but by the grace of God my bitter and jealous feelings are fading. Little by little. Side by side with the one and only I AM.