PLEASE READ/ WATCH Anxiety and Depression

THIS. So real, so true but I want to add something . As a believer, this battle has to be one of the hardest things. Ever to handle.  I have been told every one of these words at some point in my life but particularly since I got sick.

You are not trusting God

You are in what if land and you can't be there because Jesus

You are jumping into conclusions and they are all negative

You are not even thinking of what God has brought you through

You are being ungrateful to God for what he has done

Everything you say is not logical or real

Your feelings are sinful and wrong

How can you be struggling so much with things that never even happened

You don't know (fill in the blank worst case scenario) will happen

feeling scared over that next ball being dropped is wrong

feeling depressed when that ball does drop is not acceptable

You know who holds the world so just calm down

You have no reason to act or feel this way

I could continue but I won't. When I end up being told any of this you know what it leads to?

calmness? no

peace? no

Comfort? NO

In reality, it  more often than not  (always) leaves me walking away defeated, feeling like a failure,  lost, ashamed, depressed, alone, invalidated and the guilt, oh the GUILT. SO MUCH OF IT. I  end up believing that my feelings are sinful.  The guilt that comes with the shame over having these feelings in the first place is absolutely crushing.

  I don't want these feelings, I don't want to live in what if land, I don't want to live in fear of that next blow, I don't want to fail God. I want more than anything to pawn it off on Jesus, I want to trust him with my whole heart, I want to live in the moment, I want to have the peace that surpasses all understanding.

Despite my wants Satan has power and He knows how to use it and is pretty good at it. I mean c’mon Who would want to live in such fearful suffering at all times? nobody. That's who. The easy Christian remedy I am told is the standard Jesus will save you if you give it to him, stay in the word, and pray.

There are aspects of everything I just laid out for you  that are true. I know Jesus is my rescue. I know He can take it all away in the blink of an eye, I know I need to trust and that God is worthy of complete trust, I know I need Him to endure my anxiety suffering,  I know none of this is in vain. I know he can crush Satan’s influence with nothing more than a single word.  I know He is using my pain to reach others. I know, I know, I know. Loud and clear.

However, there is something I need YOU to KNOW.  Despite some of these things being true, these unwanted feelings don't (minus a miracle of course) just disappear. Making me feel beaten down and so ashamed of myself is not helpful. In fact, it makes me want to give up because I cannot just simply turn off these feelings and it seems as though people have an expectation that it works like that. . Let me just tell you right now I will not be able to ever meet these expectations so whether you understand them or not please, I’m begging you, think before you talk. Think if what you are about to say even with every good intention could make me feel like a complete failure.

ENCOURAGE ME WITHOUT EXPECTATIONS.

Let me repeat that.

ENCOURAGE ME WITHOUT EXPECTATIONS.

ENCOURAGE ME WITHOUT EXPECTATIONS.

ENCOURAGE ME WITHOUT EXPECTATIONS.

Support me with the hope found in scripture, tell me stories of how God brought you out of hard places and I am not alone. Sit with me in my struggles. Pray for me. You don’t have to know what to say. You don’t have to feel like it’s yours and only yours responsibility to bring me to a place where I have an epiphany and my heart, mind and soul do an instant turn around. Don’t expect an instant turn around. EVER. Sometimes, less is more guys, less is more.

uncensored version of my devotional

As most of you know I had the opportunity to share Jesus at the women's ornamnent party on Saturday. I want to thank you all for your support because  it was way out of my comfort zone but you all worked with me and made me feel more comfortable than I thought I would ever be. I said it was recorded but I have had download issues galore but I think I have it fixed. THINK. If you click the link it should pull it up via facebook even if we are not facebook friends. should. Let me know if it doesn't work and I will get frustrated with it some more LOL

https://www.facebook.com/allyson.hartman.3/videos/2230089540348792/?l=3523458466721859591



 I forgot to mention at the time but there is another version of my talk that shares some graphic reality that was not really appropriate for the occasion but if you are interested keep reading.

Romans 3:21-26 The Message (MSG)

The God-setting-things-right that we read about has become Jesus-setting-things-right for us. And not only for us, but for everyone who believes in him. For there is no difference between us. Since we’ve compiled this long and sorry record as sinners and proved that we are utterly incapable of living the glorious lives God wills for us, God did it for us. Out of sheer generosity he put us in right standing with himself. A pure gift. He got us out of the mess we’re in and restored us to where he always wanted us to be. And he did it by means of Jesus Christ.

God sacrificed Jesus on the altar of the world to clear that world of sin. Having faith in him sets us in the clear. God decided on this course of action in full view of the public—to set the world in the clear with himself through the sacrifice of Jesus, finally taking care of the sins he had so patiently endured. God sets things right through the hope of Jesus.

In an act of such mercy and love God sent hope to meet us where we are. Jesus was sent into a broken world to fulfill God’s perfect rescue plan that each one of us need. But sin can leave us in such oblivion that we don’t even know hope is out there in the first place or we wander so far away that we can no longer see the hope we once had. Both are detrimental, but the good news is it doesn’t end here.

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.

This plan doesn’t always make sense to us, when we are living it, it can be very hard to see how any good can come out of that circumstance but oh man are we wrong.

  I think back on a time in my life where I felt completely hopeless. I had been facing health battles due to some trapped nerves for about 2 years. The physical pain brought me to a place where I believed I could not possibly have faith in a God who makes THIS a part of His plan for my life. Having pushed Jesus out of the picture I still had to have a way to cope. I turned to cutting to escape this life that I could not handle myself.

This cutting coping mechanism I had began was soon not enough. I gave up and didn’t want to fight anymore. I landed myself in a pediatric psych ward. In the background God was still targeting me but I refused to even acknowledge it. My first day involved a mandatory group therapy session where we all went around telling our stories, I think I was maybe the 5^th person in the lineup and I have never felt like more of an idiot in my life. The first to go was actually my roommate who shared that they brought her straight up from the ICU where she was barely revived after her third suicide attempt. The second girl shared that she has had several suicide attempts because her boyfriend had taken her hiking one day and when they got to the top of the cliff he broke down, told her he was sorry but he had to go and jumped off  right in front of her. The third girl to go had been raped by her uncle and was now pregnant with his baby. The next had no one, she had been there for 3 straight months and never had a visit or a phone call because nobody cared about her.

I was stunned. I said a few fragmented sentences and we went on to the next person. When it was over I quickly shuffled back to my room with embarrassment. I had a nurse who immediately called me back out to sit at a table in the corner with him to talk. He asked why I was here and again I stumbled through fragmented sentences, but he stopped me. “You know God, don’t you?”. I quietly said yes, and he proceeds to ask me again why I was there. When I didn’t answer he told me to look around at all of these people with shattered and hopeless lives. I knew you were different. You have something that none of them have, hope in Jesus and yet here we are. I ask again why you are here but this time don’t answer me. He reached over and grabbed a bible and gave me passages to look up and sent me to my room to reflect. Letting God back into my life and trusting Him again took effort but I had learned that I really cannot do this myself. I had to be broken to the core in order to be restored. No matter where you run you are His and He will target you, love you, and fix your broken pieces if you let Him. He waits for your return with open arms.

Through the birth of Jesus our true source for hope and joy came to meet us where we are. There are so many hopeless people in this world who do not know they can be put back together. They don’t know the good news that there is a rescue plan out there. They don’t know they have a hope filled future, they don’t know that it’s possible to find joy in pain. They don’t know that they are loved, cared for and cherished. Jesus is desperately needed.

Once I grasped Jesus again my mindset changed. Only at that point was I able to look back at my life as a whole and see the blessings in disgiuse . The journey of life has many speed bumps that I used to  look back at and see nothing but hurt but now I am replaying how God moved mountains in ways nobody  could ever imagine.

 

Psalm 139:13-14 New International Version (NIV)

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well

.,

 God has a reason for knitting you in your mother’s womb. You were wonderfully made for a designated God given purpose no matter what. Complications  of pre-term labor made The doctors really push my parents to abort me, they said I would be a vegetable and basically a worthless human being if I even survived in the first place Against all odds., I was born alive at 24 weeks weighing 1 pound 8 ounces but still with little to no chance of survival. My life goes to show that God doesn’t do “chances”. I spent 4 months in the NICU with a lot of hurdles, scary times but more miracles than can be counted. The doctors fully believed I would have severe brain damage and my lungs would never be able to support me but Doctors are not the creator and giver of life. The creator calls the shots.

Anytime a loved one is ill in any way affects others. My life events have not only brought me to despair also left my parents with some incredibly hard emotions and feelings.  I am fairly certain one of the hardest moments was the day my mom happened to walk by my bedroom and heard some weird noises. When she went to check on me I was unconscious, gurgling when I tried to breathe. Of course the ambulance crew was called and they were trying so hard to get my airway clear but for some still unknown reason my tongue was so swollen they couldn’t and knew I needed to get to a hospital because my brain and organs were not getting enough oxygen. At the hospital I had slipped into a coma because at some point my organs had failed  that night, nobody knows how long I had been without oxygen and the doctors were not sure I would pull through. This was the worst possible scenario.  They knew my brain was damaged but nobody knew how badly until I woke up.  When I did the damage manifested itself in severe short term memory loss, involuntary movements and I had the hardest time trying to connect words. The MRI showed that the back portion of my brain had died off from a lack of oxygen and doctors thought my deficits would be permanent. I slowly improved and over the course of a few months everything but the memory loss was gone and even that was significantly better. Not only did He destroy brain damage He restored the rest of me at the same time. My trapped nerve issues? Gone. My desire to cut? Gone. My will to live? Restored. My life? Saved.

God took the worst possible scenario and changed it to the best thing that could have ever happened. To me, He gave me my life back. The following 3 years were basically how you would expect a healthy persons life to be.  What I assumed was over was not and trusting is all I could do.

 Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

.

 It will be 6 years on the 13^th since I was diagnosed with nervous system failure. This is where we have 2 options, fight with Jesus or fail to fight without Jesus. I have done both and there is no hope when we try to do this ourselves. We will fail every single time. This is why God sent us this little baby , He knows we don’t stand a chance without Him. This birth of Jesus changed my destiny, your destiny and the hope of a free destiny for the whole world. This is the good news we celebrate

blood disorder

I went and saw a hematologist are Barnes yesterday and it went quite well. She seemed amazingly smart and was very compassionate and eager to help figure things out. She said that my veins could have clot pieces that disturb the blood flow, we don’t know yet. She is going to review it with there interventional radiologists because unlike the ones I have dealth with , they have radiologists that specializes in the venous system vs the other ones do a bit of everything.

She looked at the pictures of how my body turns red and swollen in places, usually I can feel it in my face. She said my left calve is bigger than the right and all this could be from a blood disorder as well. I had blood work done and sent on my way until she calls me after the review, with her conclusion.

I woke up this morning to a message that my “clot factors” are  critically high. It should be no higher than 230 and mine is 724. The higher the number, the thicker the blood. The lab called it in and she said it is signs of a blood disorder because I am on high dose blood thinners and it is still THAT high. Basically, I have a disorder but they don’t know what yet and she will get back to me.

So, that’s that.

Carrollton - Rebuilder (Lyric Video), 2017

Rebuilding. restoring. sheltering. I have not written in awhile which is usually a no news is good news situation. My "clinical trial" medication has improved my life quite a bit for once! God has restored things that I thought were hopeless pits. Goes to show God can't be put in a box, with limitations. I am so amazed at how He does things, it's mysterious ways that I will never comprehend but I can confidently say that joy can come through pain, second chances are given out like candy, and He never breaks a promise. 

Rebuilder
My walls were crumbling
Restorer
You brought the light into the room
And filled my lungs
So I could learn to breathe
My shelter
My warmth in the coldest night
My helper
You held me up till I could stand
On the promise that You are
Rebuilding me, oh you promise
that you are rebuilding me- carrollton

 I am being schooled in trust with reality checks. I was reminded today that my disease is far from gone and I have pushed myself way too much in the last couple of weeks, pretending I was healthy and pushing my limits.It has resulted in a crash and burn day in which my body has been attacking itself for hours now and nothing I do is helping. Hives are spreading and my face feels like it's on fire but I have felt overall better for a couple of weeks and if it ends now I was still given a blessing. Life is hard but God is good. I don't know what direction God is going with all of this but for today, for right now, I am thankful.

post treatment update

I know people want to know how I am doing since the ketamine infusions and I have hesitated to say anything because I just haven’t had words.

During the 2 weeks of treatment God moved mountains and did so many miracles.  I had perfect blood pressures and scattered full days pain free. He made his presence well known along the way providing me rides, finances and a doctor who cares more than any other doctor I have ever seen in my  life. This doctor went as far as giving me a free treatment and uttering the words “this only puts me out like $500 and I want to see you get better” He was so patient and understanding when the panic side affects of the medication hit once I told him I needed help. I went through a couple treatments where I considered giving up because of the 2 hour long panic attacks that I did my best to hide. He was puzzled as to why I didn’t say anything but when I said it was because I didn’t want him to give up on me because That’s what happens when I have an issue with anything out of the “normal” …I have been given up on a lot.

He sat down in the room with me and promised he will not give up on me. Ever. And stayed with me for 2 hours and talked. This is when he learned that I have a weird tolerance issue to medications, even Strong anxiety medications did absolutely nothing.. We were tripling the ketamine doses left and right because I instantly would become tolerant to the dose we were using so we had to up it each time. If the dose was too low I would panic. While sitting with me he looked over and told me with the high dose I should be practically sleeping not watching Netflix and talking with him about it, he was surprised but except for that it didn’t seem to phase him. He didn’t call me a liar, a drug seeker or tell me he can’t and won’t try to keep treating me. That’s an epic miracle right there.

Suddenly, on the second to last treatment my nervous system crashed again leaving me severely dehydrated. He explained that there is a chance that I won’t be able to come off of the IV fluids because a urine sample revealed to him that it is not even possible for me to “just drink more” and have it be effective because I would have to drink a ton of salt water, regular water won’t cut it. My symptoms are slowly  returning. High heart rate and majorly low blood pressure started up but my headaches have and still are better which was the whole original point of the treatment. It wasn’t meant to fix my nervous system, God just graciously gave me a much-needed break.

 I would call the treatment a success but there is no data on what is likely to happen now that I am done. Nobody knows why it came back which I won’t lie, It was discouraging after 2 good weeks. I have a range of emotions going on right now but I am doing my best to let God lead and don’t let discouragement take over for The miracles that just happened. God works in mysterious ways that I can’t comprehend! The plan now is that the doctor will be going to a convention next week on ketamine and is presenting my case, he will then talk to my neurologist and come up with some sort of a plan and call me in a few weeks.

“All we have to do is follow Him, our feet stepping where His feet have already made a path. The hard work has been done. We don’t have to blaze a trail; we just have to put our feet exactly where our father leads us.”—Laura Story

End of treatment plan

I have been a slacker on updating people with my treatment path. Sorry about that. I am going to recap here and then explain what is happening going forward.

The basics of how ketamine works is kind of odd but the desire is to get me into a dissociative state, it is not a pain medication so I don’t feel “high” from them but when they reach that state it literally is like my thoughts and mind are separated from my physical body for 2 hours. IF the correct dose is given the feeling doesn’t bother me one bit but if it is not high enough I will completely flip out so bad that IV anxiety medications do nothing.

 This doctor is hands down the best doctor I have ever seen in my life. We paid for 6 infusions but he said he wants to see me feel better so he gave me a free treatment! Not only that but the usual patients he sees are psych patients and the protocol for them is like 1 infusion every couple of weeks or something along those lines but the pain protocol is back to back treatments so he leaves his other full time job to come to the clinic JUST for me!! We started out slow with dosing and increased it with each infusion. The doctor is quickly learning that I do not metabolize medications right AT ALL. I had the freak outs during every other infusion and he said he has never seen this before but I become instantly tolerant to the dose we are using and that it why the freak outs happen every other time. He has had to at least double and triple my dose every time or I will not reach the  desired dissociative state.

With my last treatment he was amazed that at a high dose I was holding a conversation with him and watching Netflix when I should be practically sleeping. Needless to say I am giving him a run for his money on getting over these hurdles and finding the right doses which is very tricky but he promised he won’t give up on me and I believe him.

On to results! God is amazing. My pain levels are not getting as high and it is taking less medications to get them to a tolerable level, I even had a day pain free! I forgot what that feels like. Even more incredible is that my blood pressures are improving more and more each time. I knew going into this that this is not a miracle cure all treatment and even though these results are promising I am basically a clinical trial, nobody has a clue what my body is and will do so we are winging it! Given my improvements on the pots/dysautonomia front the doctor said if we can afford another round of 6 that we should do it because we don’t want to quit now and risk loosing the chance for me to improve more.

There is no data to be had for my situation so we are just rolling with it. We don’t know how long these affects will work for me because again, no data. That makes going forward and spending so much money on it when I could go right back to my old self and loose all the progress that was made, that could happen but so could me being better for years to come, we just don’t know.

 I can not put into words how thankful I am for my Chatham family and their willingness to drive me places and wait for hours and for the prayers from my church support team you all have blessed me and I don't know how we would have pulled this off without you so, thank you.

The decision to move forward has been made to buy 6 more infusions with me chipping in on the payments with my social security money. Lastly, I have a few specific prayer requests.

1.     I am trying to qualify for medicare to pay my part B premiums based on my lack of income, because if I get approved it would give me almost $200 more a month that I could put towards the treatments, dealing with medicare will make you loose your marbles at times. (always) so pray for my dealings with them.  I WANT TO MAKE IT VERY CLEAR THAT I AM NOT SHARING THIS IN SEARCH OF FREE HAND OUTS BUT FOR PRAYER.

2.     Wisdom for the doctor to get the doses and strengths at good levels and wisdom for me and my family as we make decisions. My first treatment is tomorrow.

3.     That the Lord will provide transportation (the schedule will be at the end of my apparent novel)

4.     That I will tolerate the DRAMATIC increase in the doses and for no more 2-hour panic sessions.

5.     That I have a thankful heart for His obvious hand in this providing me peace and endurance even through the panic attack days that make me want to give up.

• PARTIAL SCHEDULE--I do not have  times yet, but I have the dates
• Monday 9-10-18
• Wednesday 9-12-18
• Saturday 9-15-18
• Monday 9-17-18
• Wednesday 9-19-18

new treatment path

I wanted to share with you and ask for prayers and wisdom about a whole new treatment path I am looking into. There is another girl with POTS at my doctors office that mentioned this to me because it has helped her so much. There is a growing body of evidence that indicates that ketamine used at a sub-anesthetic dose, a much smaller dose than that used in general anesthesia, is highly effective in alleviating treatment-resistant depression, suicidal thoughts, bipolar depression, anxiety, OCD, PTSD, and chronic pain. This use of ketamine is an “off-label” use meaning the insurance will not pay. This would be all self-pay.

So, I submitted my information to the clinic yesterday and got a response from one of the doctors saying they are interested in meeting with me in the form of a consult but I had to submit record releases for all of my doctors and fill out other health forms which I submitted today. Once my documents are reviewed by the team, they will contact me to inform me if I am accepted into the program or not. If I am I then set up an initial consultation with Dr. Foroughi.  This in-office visit will be approximately 1.5 to 2 hours.

If approved it will be 6 infusions over 3 weeks lasting about 40-60 minutes each. What it will do is cause me disassociation often described as a daydreaming, spacey, or floating experience for the duration of the infusion. I don’t fully comprehend how it works for chronic pain but the studies have shown that not only will migraines be less frequent quickly but it also has shown to help the symptoms of people with POTS/DYSAUTONOMIA with the effects of the treatment to the brain.

Pray for my family and I as we begin this path and that God will give wisdom to all involved as we explore this option.

Long waited update!!

I
t has taken me so long to update people because unlike my normal self I just haven't known what to say. I still don't really so this could jump all over the place, you have been warned. I have been in a constant state of waiting for the next ball to drop which drops frequently and without warning and I break a little more with each one. .As you may or may not know I hade a port exchange surgery about 7-8 months ago where I found out that my vascular anatomy is a progressing war zone. My big veins leading to my heart and brain are almost all completely blocked by who knows what forcing my smaller veins to have to try to compensate for the big ones. The other mystery is why the veins in general are straight up collapsing. Due to the collapse we were unable to do the procedure we intended but we tried to go for the picc line and the could not get the wire past my armpit because the veins disappear but they sent me home with it thinking that very slowly they would open again. pffffft rightttt. I spent hours then in the ER dealing with that failure. I then went into my doctors office twice to receive a special medication to unblock it which actually worked for a little while. Now it is going bad again so when I went in for them to try to fix it the internal war zone is progressing to the point where my right side internal is collapsed. Given that information the doctor said he is going to try something new, he removed the existing port and put in another one using the exact same pathway and then he went into my leg to reach up and straighten the bottom of the new port. If this port goes bad I have 100% no way of fixing or replacing it due to the collapsing. This is it. During the procedure they said that it is very abnormal to have veins that look like this and that I need to go see my hematologist ASAP because I am high risk for heart attacks, pulmonary embolisms, and aneurysms. THERE SHOULD NOT BE ANY CLOTS SINCE I HAVE BEEN ON HIGH DOSE BLOOD THINNER INJECTIONS. Later I got a call from my heart doctor saying that they aren't sure if anything can be done at all and the damage that has been done is irreversible and my only shot at this I have is to go see the hematologist (I think they pawned it on him because they didn't know who to send me to. This issue has nothing to do with him so we were both frustrated that they keep pawning me off on him) and start seeking for an underlying disease that is causing this. Even if they find one the majority of them don't have treatments but it's worth looking into. On Friday I saw my hematologist with frustration and he really didn't know what to think. He pondered and isn't AS concerned as the radiologist about heart attacks and all the stuff I said above but it can't be ruled out. He decided that I should see a friend of his who is a hematologist at barnes who LOVES puzzles and that the only way to get an appointment with him is if my doctor called him and explained the situation because again not exactly his specialty but my doctor wants to pick his brain. I am now waiting for a call from his office and I am praying I can be seen soon because it can take months to get appointments for anything at barnes. My doctor also mentioned that sometimes vascular surgeons can go in and re-route the veins but we are going to hold off on that until I see this other guy. So that's that but one of my biggest fears is coming true and I need all the prayers I can get. I am now having port issues again and I am in a state of constant panic because I know this is it for me if issues continue. I have had one ball dropping after another and although I have a smile on my face I am struggling to stay afloat. I will be vulnerable right now in saying I am scared. Scared of the known and the known and I don't feel like I have it in me to go through this new path, that is probably going to be a long one. I'm defeated. Without Jesus that is where this post would end but God's story in my life isn't done yet, I don't understand what's happening but God does and that's enough. He gives us promises to find Him and find hope, peace, love, and faith.

Proverbs 3:5-6

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will direct your paths.

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. 

dysautonomia: the double life

Part of why it is so hard to find doctors that treat this and why the different "symptom management ethics" vary so much between doctors is partly because of how unpredictable this syndrome is. They just don't seem to grasp that. I live in the world of 2 realities that can change at any second but they are both STILL THERE.

As many of you know I have some port issues going on in my life right now and the plan is unknown at this time. My doctor is starting to question my need for IV fluids a bit but my nurses (thank you Jesus) are sticking up for me.

The reality is sometimes my blood pressure is normal or even high. That is random and not usually the case but I swear the doctors think that I don't need hydration therapies if my blood pressure is stable because they focus on the good numbers AT THAT EXACT MOMENT and disregard everything else including other symptoms.. I have most of the symptoms on this chart.

Yes, my blood pressure can be normal but often even if it is I still can feel blood draining from my head and feel like I am going to pass out. Also my blood pressure is not my only symptom. I have a variety and overall hydration therapy has worked on treating me as a whole better than any medication ever did and does. I do have tolerable days and that is great but in no way does that mean I am better or cured or no longer need treatment which the medical world has a hard time with and doctors who have not been with me from the beginning seem to think I am really not that bad.

My good life and my bad life can change back and forth in the blink of an eye. Sometimes I look like this:

My condition could change so rapidly that 5 minutes later my life becomes this:

Due to living two lives basically I am emotionally fragile and as weird as it sounds if my blood pressure is normal I cringe because I have a fear of everything being taken away from me just because they caught me at an ok time. Right now I am emotionally fragile because I don't know what my doctor is going to do but I will always have a fear in the back of my head that they will not believe me and declare my treatments unnecessary. It consumes me. Anxiety and depression just slither there way in and I loose my marbles. The best thing about God is He can pick up those marbles and put them in perfect order. He is a God who gives and a God who takes away. The take away part is so very hard and scary to try to wrap your head around but I KNOW He doing things for the good of others through this and probably my suborn self as well.

That is the gist of it. on Friday I go back in for more clot busting medications and if that fails well, I just don't know but it's scary and with each blow comes a desire to give up. I won't it is just so hard to live this day in and day and at least for me the emotional aspect to my life journey is so much harder than the physical. I am hanging on but with fear attached. The struggle is real and needs prayers. I am thankful for such a great support system and a God who loves all of my broken pieces and will one day restore them. That is a promise I cling t at times like right about now when everything feels like it is falling apart.

my life 1.0: mental illness + chronic illness

mental illness. This is where I am going to start because things need cleared up before I continue. It is a very controversial issue in general and I hate conflict so be nice.  I have had depression and anxiety problems since I was a child. That time in my life is clear as day in my memories because of the response I got when I dared to say anything about it.  I can immediately think of 5 people that sat me down and said everything in their power to convince me that mental illness is not a real medical type of thing, it is me not trusting God. Bible verse after verse was drilled into my head and the key to this was to memorize scripture and every time anxiety or depression hit me just say that verse over and over again until those feelings went away.

Depression was not an accepted word either, instead it was downplayed as sadness. As you can probably imagine when my feelings didn't go away I felt even worse because I believed I was not only failing those who tried to teach me but I was also failing God. I was riddled with shame and my only coping option was to not talk about it and make it a skeleton in my closet.

**please note: I am not saying medication is the only or the best option for everybody. I am also not saying that memorizing scripture to repeat to yourself is a bad or useless thing to do.**

 Turning to Jesus is always the right way to approach everything. So yes, people were right in that aspect but how I would describe it now is that God is the answer but He can use things such as therapy and medications to work in our lives and these "tools" are not automatically sinful. Do I believe that they can be sinful? YES. Anything that we use to take the place of God is sin but using these tools not as replacements but more like supplements is in my opinion and in my life is not directly wrong.  I got the help I needed off of ^^^^^^ principle. It's a principle I follow to this day, I cannot let my medications be my only hope, or my only escape, or my ONLY anything because God occupies that ONLY spot. I also learned that sadness and depression are two separate things.  turning to medications because you had a bad day or a bad week or even a bad month is not what I am talking about. Depression takes on a life of it's own. It's deep and pitch black like a pit of sorrow that tells you that your life has no value so much that you come to believe it. It's real. Scary real.

Somewhere in most cases of chronic illness lies mental illness. It is so incredibly difficult because once a doctor knows you have any form of mental illness it becomes the answer to it all. You are not physically ill, you are mentally ill and have convinced yourself that you are sick when you aren't. I legit could not count how many times this has happened to me. When you are physically suffering having that dumped on you is 100% soul crushing. Your chance at medical help starts and ends right there. Over and over and over. They stop trying to find a cause to your symptoms because they are not real. Imagine having a kidney stone and the doctor comes in and tells you that you are making it all up for attention or for my favorite phrase "drug seeking". Did you just cringe and think that you didn't want to picture that in your head?

It is a vicious cycle because physical illness can be the reason behind mental illness. It is sometimes hard to figure out which came first but in the end that aspect really doesn't matter. I would say it was maybe a year ago when I was hospitalized for the 5,928th time and blood work showed that my liver was struggling a little bit so they called in my GI for a consult. He looked at me, looked at my chart and proceeds to tell me that he thinks it could be a drug interaction and without hesitation he told me that he really doesn't know which med could be the culprit but I really don't need these psychiatric medications anyways which I bet you will disagree with me but there is no such thing as "clinical" depression or anxiety and that I needed to stop psych meds and go to a therapist instead.

My stunned response to such a blunt statement was " I don't think anybody wants that. It really isn't pretty" he just said my liver is fine we will just keep an eye on it and walks out. Now I knew he has a point because yes medications can affect the liver and he could be right in the fact that I should stop some of them which I was willing to do if that was REALLY the problem. I contacted my psychiatrist who said in her opinion nothing she prescribes would do to my liver what was happening. So many years of chronic illness and it is still an uphill battle on the mental vs. physical controversy. My approach to it is to self-advocate. You have to these days. I may not like conflict but when it comes down to my LIFE that we are dealing with I have to stick up for myself. I will polish this off by saying that these are MY THOUGHTS AND OPINIONS.

Summer depression

Summer has always been my favorite season. I would spend hours on an inflatable boat with a trolling motor on the river soaking up the sun and just spending time in God's creation. Being out on or in the water was my happy place. Just being in the outdoors exploring new places and  having fun. It will be almost 5 years since my last vacation with the BFF. We rented  a cabin on the lake, spent our days going on safari's and exploring the land and probably my favorite part was when the sun went down we found a dock to sit at, with our feet in the water just talking away.

Being in the middle of nowhere on a dock and all you could hear was fish jumping, birds chirping and what had to be an army of cicadas making a variety of sounds . I took in every second of the peace and quiet, it's memories I will never forget. 

When I got sick every aspect of my life changed.. This disease has taken almost everything from me. All of those things that I loved I can no longer do and might never be able to do again with every summer bringing harsh reminders of that. Summer has become my depression season. I want what my life used to be more than I could even explain but it's gone without divine intervention.

 Grief waxes and wanes but it doesn't go away. I battle the desire to lean on my own understanding (which is nothing) and loose site of hope. I have been really working on surrendering this to Jesus and leaning on His promises instead of my understanding. I am so thankful that God meets me where  I am. broken. 

right now I have to focus myself on what God promised me even though it may not look like what I expected it's still truth. There is a plan in all of this.

Jeremiah 29:11 

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.

"busy people topic" turned testimony? yup.

***I didn't intend to share my testimony, I was on a whole other topic but words flowed and here we are.*****

Back in high school I was just going through the motions of the typical kid that hated school and had a social life going on. It was normal until one day I was hit with crippling abdominal pain. I saw so many doctors and the ER trips seemed endless just like the pain. I was finally diagnosed with iliohypogastric neuralgia and spent two years in pain, having surgeries and procedures and had several nearly fatal infections. I had to drop out of school and suddenly nothing became normal. I got defeated and spent some time in a psych ward and I gave up on the God I grew up hearing about. It was incredibly hard. Then one day I end up in a coma from multiple organ failure. When I woke up my body had kind of re-booted and my earlier health issues improved, I had to deal with memory loss for months but when that went away I could start life over. I also found God again because this coma at the time seemed like it was the worst thing that could ever happen but the opposite thing happened, it gave me a second chance. Only God can pull off something like that. My faith began to heal just like the rest of me.

I went to college, got a job, got a reliable car and was living in a rental house. I thought my past was behind me and I would never have to go there again. Things were going well but I fell into the rut of replacing God with the things I mentioned above. I let the business of life take over my relationship with God. I lived that for 3 years loosing site of the miracle He did. I got a severe cold that would not go away. Doctors couldn't figure it out but it put me out of work for 2 months but I got to the point where if I didn't go back I would be fired so I dragged myself into work but 3 days in I had a bad seizure that has changed my life forever. I lost my job, I had to have my parents pay my bills it seemed like my life was unraveling. I then began passing out up to 20 times per day and my doctors were clueless. I had to go back the things I left behind and it broke me.. I had to make the choice of going forward with or without Him.

I didn't know what laid ahead for me but I did know that I couldn't do this without Him this time. It took about 2 months for me to find my diagnosis but when I got it I learned that it doesn't have a cure and it's all about symptom control. I was taking 10 different medications a day and had a surgery to have a port placed so I could begin daily hydration infusions just in an attempt to keep my blood pressure up. My central nervous system is in failure and basically all the  things your body does that you do not have control over doesn't happen. Blood pressure, heart rate, breathing all of those things you don't have to think about because your body just does it. Mine doesn't. It effects everything.

I have had so many complications to add to it.. my legs became riddled with blood clots. A clot broke loose and went into my lung causing a potentially fatal pulmonary embolism, I have had several more seizures, I am left with a feeding tube after loosing nearly 100 pounds from nausea and vomiting, when I go places I am often wheelchair bound so I don't injure myself passing out and I'm often bed bound. Coping with this has been so hard because without another miracle my case is so severe they say I could be like this forever. The normal things like marriage and kids feels like crushed dreams.The one and only thing that gets me through every minute of everyday is Jesus. Without His promises I have no hope. He could do another miracle but He may not the only thing I am certain about is that He is here with me through every step...holding me when I need held, protecting me when I need protected and loving me with a love I can't fathom. I feel alone and sad at times but through this second rodeo of fighting for my life I have learned that God doesn't give up even when I do, He lifts me up when I am down and I can't imagine trying to do this AGAIN by myself.

I wanna cling to You Jesus
hanging on your every breath

I need to hear You now
I need to know it's You
I'm standing on your promises
I know your Words are true
You're bigger than what I see
That it's You in exchange for me
'Cause even the impossible is your reality
Jesus I believe- big daddy weave

one minute at a time

The thought of updating this blog has just been too daunting. Let's just say my life has not been a walk in the park lately. Just when I start to feel like I am in good hands (doctor wise) something comes crashing down. It is usually one thing but right now man Satan is throwing some hard punches. When you have a rare illness that doctors don't know much about  you end up lost and unsure where to turn or what to do with yourself besides laying in a fetal position shaking. I just don't even know which way is up right now.

Here is a brief overview of what has been going on lately. Back it up to me finally founding a doctor willing to do infusions but only in his office because of my infection risk. Going there every Monday Wednesday and Friday is hard on me but I know it needs to be done like that. I finally have 2 infusion nurses that keep a very close eye on me and honestly that gives me peace. About a month into this my physician left the practice and tossed me off to another doctor in the practice. I was fine with that at the time and my treatment plan was not going to change. My infusion nurses have been such blessings, they have caught things that nobody else caught because I was under the right care. It turns out my iron was dangerously low and I had to have 2 iron infusions, without this office I highly doubt that would have been discovered. I actually have yet to actually see the new doctor because he has been booked up and canceled on me once but these nurses know what they are doing.

Apparently I am there most delicate and fragile patient so everything has to be done perfectly because I cannot afford an infection or any other issues. Well, I have been have some anemia problems but they are on top of it all so I have been able to avoid blood transfusions and it takes such a load off of me just having an advocate. Despite my slight irritation that I can't see the newer doctor until April 5th I felt safe and thoroughly taken care of for the first time in so long. So, we were going forward, week and after week of me in the hands of those I trust. 

Then the ball dropped again. Due to staffing issues the infusion center has had to close for an unknown amount of time. They set me up with home health and it is one big mess. Not competent hands and when I spoke to the infusion nurses they said this is my only choice right now. I am also not being followed as closely this way and I am feeling lost and helpless again. I am just praying they open up soon. Right now I live hard minute by hard minute. Hard but God's graceful minutes.

There is the brief (I know right?) overview. Anyway, just pray for me, I feel a little beat down and tired from always having to advocate for myself.

future

Most of the time the thought of my future is daunting. The fact that this could be my life forever takes hold of me sometimes thus being why I haven't written in so long, the words just aren't there. I feel like most of my life has been one roadblock after another and it's not stopping yet. I wonder and get lost in the mystery of it all. I want to know what my future holds but God has no obligation to tell me. Trust enters the scene right here because I have no choice but to keep going. I can choose to walk it with God or without Him, that is about the only thing that is up to me and I have tried both.

One path led me to a psych ward and the other is leading my days, my life, my future. The thing is, even though this life is hard I can rest assured He has a plan and it's a good one filled with hope because He promises that to me and I may struggle with it but I believe it.

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.

"From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there"

casting crowns

My daunting life is in His hands. My chaos is a masterpiece of his PERFECT plan. My life was given to me by Him and will become eternal with Him. I now have the choice of what to do with the middle section of this life, we all have a choice in the middle, we will stumble, we will fall, but how  we choose to get back up again is all up to us. Choose wisely.