faith in hard times

Tonight has not been my favorite ever. Just trying to juggle 3 separate conditions and actually live on this earth instead of just a simple existence is hard. No matter what disease you have there are high's and lows like a roller coaster. As I lay here sulking in the fact that I don't want to do this anymore and then realizing I don't have a choice which brings me down to a low point. I am told a lot that I am strong and my faith is encouraging. It might look like that from the outside but in my bubble I am struggling. Struggling to not give up on God and to trust that no matter what happens He will be with me. It's a battle and sometimes I think it sounds like I have so much faith and handle everything that I am going through in a strong Godly manner all the time but I don't. I have moments of defeat and I give up, I have moments where I feel like I cannot take this anymore, I am done. My moments don't always involve God because I push Him away and for some stupid reason I think I can do it myself. {do not try this, I promise it won't work)

Despite what it looks like on the outside, right now I am weak and my faith is dwindling. I have been dealing with this for over a year now and have a very long road ahead of me that I am stalling on because I don't want to wake up tomorrow and deal with my disease. I rarely want to wake up on the following day since without a miracle, I have to fight the battle again and I am tired. I want to throw a temper tantrum and refuse to do it but obviously life doesn't work like that because you would have a pile of adults thrashing and whining on the floor and potential injuries. (go ahead picture it happening, you know you want to)

Regardless of how I feel I know I have to resort back to facts and promises from God despite my broken mental state. Sometimes your heart isn't in the fight and you have to refer to what you KNOW about the character of God and His never ending love instead of the trial that you face. I am running purely off of my knowledge of God to get me through each day which is harder than if my heart was in it as well but that's life and my current battle that I face tonight as I sulk and get cranky over how my entire life has been hard and now we add more stuff, how fun. I know God accepts my knowledge based life right now because my heart doesn't have to be involved in order to love, cherish, and praise Him over facts of His life.

I make less sense as I go, I think my mind is a little scrambled but please pray that I stick with and always remember the facts and promises of God
and pray that my heart will catch up and be all in it as well.

Side note to anyone facing trials, read this book. You will be humbled.

http://www.amazon.com/Hardest-Peace-Expecting-Grace-Midst/dp/0781412153/ref=sr_1_1?s=books&ie=UTF8&qid=1419842369&sr=1-1&keywords=kara+tippetts

sustain

Sometimes it is hard not to just give up and never leave my bed forever. I will be honest, I don't want the next day to come. I'm done with it all, I feel like I know that next day is going to be sucky. My will to fight is a little broken tonight as I know this is not just going to go away instantly {unless miracles occur} and I will probably be dealing with this my whole life. I feel like I am not living but just existing. Every day is a battle and I tend to forget God is walking with me and pushing me through times like these when I just want it to be over. God sustains me through each day no matter what and without that I would not be able to handle all this stuff that is being thrown at me and beating me down. The promise from God says He will rescue me. It is a promise and an unbreakable one. I don't know when He will rescue me but until that day I will be sustained to face tomorrow.

hematology report

This is not going to include everything and it will be fragmented because I feel like crap.

First of all, this doctor is kind, compassionate and knowledgeable and was able to explain a lot to me that I was unaware of so that makes life easier. We basically discussed my different blood thinner options, how the thinners work and the possible complications of them all. FYI: I am staying on the one I have now.

He also doesn't think the clot formed from me laying down all the time he said that since my legs are elevated blood can flow correctly thus no clots. He put me in the category of unexplainable blood clots which are tricky because once you stop the blood thinners the clots seem to come back a lot. So, he is going to keep a close eye on me due to that.

He chose to go with the original 6 month regimen but said it could be bumped up to a year depending on my POTS symptoms at the time. After that 6 month period he said we have some hard decisions to make as far as what to do at that point. Can't wait.

Apparently cancer causes blood clots a lot so he said breast cancer is the only one he would be concerned about given my age but he found nothing on an exam and I have to keep a close watch for that. He said a massive NO to stents because he said that they can actually create clots and well so not the point of it.

He was able to see the signs of my automatic nervous system failure pretty quickly as we talked my pupils did not move and my mouth was dry. After a closer look my eyes are being hit hard by this disease so visual issues could eventually be a problem but not yet.

I basically got a lot of helpful information that I needed to know so even though he didn't treat me for anything, he did give me what I needed to watch for and do to help myself so that counts in my book! I go back in 3 months and see how everything is going but overall I am very pleased with how the appointment went and the doctor is amazing so the journey continues...........

Doctors! It never ends.

I go to see a hematologist/oncologist at 2:45 tomorrow to decide what to do in the long term with my blood clots. The current ones should be almost dissolved by the lovenox injections and blood thinner at this point. I will continue with blood thinners and all that great stuff for 6 months but after that I am at high risk for developing more due to my forced sedentary condition. Bloods clots are life threatening so that is the last thing I need. They might decide to put stents in to block any clot formation from breaking off and traveling to my lungs and causing a pulmonary embolism which is extremely life threatening and it has to be caught and treated VERY fast or well bad things.

On a side note: these last 4ish days have been difficult due to my heart and faulty nervous system deciding that now is when to go crazy. I can't stand and walk at all without my heart rate being 130-145 and its causing chest pains and making breathing a challenge. Even laying in bed I can hear it pumping too fast to count. I have -10 energy from my heart and body having to use it all to keep my body functioning. Sorta functioning. My home health nurse is coming out tomorrow to change my port needle and test how thin or thick my blood is and I ask that you pray for me that I don't have to go to the hospital and I can just stay home and not move for the holidays. She is required to call the doctor if it is that high and the doctor would put me in the hospital, I am doing everything I can to avoid a hospital stay so please pray with me that I can spend the holidays at home with my family. I have spent enough time in that hospital I should have my own room by now!

Tough ramblings

Tonight has sucked and all I can think about is how much I lost through this journey. I feel like I lost everything, our rental house, my job, my ability to walk, no more baths or showers due to standing in heat and it makes you pass out, the ability to go to the gym, and the only place my body is comfortable in is my bed which leads to isolation. So all of that is racing through my mind right now.

I just want this to be done. it's been a year and a whole lot of healing hasn't happened. I have a syndrome that will never go away and I am so overwhelmed by that alone. I know there are treatments in the sense that they treat the repercussions of my faulty nervous system but the nerves system itself cannot be changed. I will never be able to get my life back. ever. but my life will go on without the past and it will just look different. I have no clue what I will be able to do when the job word is mentioned. My doctors don't even say it so yeah this will never be done. NEVER BE DONE.

I believe that veryyyy slowly it will get a little better but it will never be gone. Thinking about my future is like thinking about holes. One giant hole of unknown and not even knowing if it can or will happen for me to get a job and resume normal daily life things. I know in my brain god is good and all for me and would never hinder me himself so I know He has a plan of some sort, it is just hard to trust Him and the plan.

I'm trying to live minute by minute right now and obviously as shown above its not happening.

Jesus

I came across this quote from someone last night on a fb forum on chronic illness and I am still shocked and saddened by the lack of love, compassion, hope, and peace this lady lacks and the brutality of her words.

"If your health is so poor and you are barely able to function, how can you expect to have a relationship? Relationships really need 2 people functioning !!!"

You can have a relationship just like any other if Jesus is in the middle. To say something so harsh as you can't and never will find a soul mate based on a physical illness is oh so wrong. I've seen it happen and it can even strengthen the bond between two people as they rely on each other to face every struggle and trial that gets inserted into life. Do I know this for myself? no but I can't count the number of times I have heard and seen this love of Christ transforming hearts and forming love.

There are so many marriages where only one spouse is functioning; whether it is due to physical illness, mental disorders, or any other struggle. There marriage doesn't instantly fall apart due to a tilt in the responsibilities of one or the other person. They trust Jesus and keep on going with the knowledge that God is in control and He will provide what is needed to persevere through these times of life.

Dear quote lady,

The answer to it all is the love of Christ that is more powerful than we even know.

Honesty

ummm first of all, things are dumb and don't notify me when someone comments like it used too, So, sorry about that I am not ignoring anybody.

moving on, when you are faced with a life long disease and the complications that go with it, it's one of the most defeating and soul crushing realizations. It immediately puts you to your knees in search for peace, hope and comfort. God comes and rescues you. That does not mean your circumstances have changed, they may or may not according to God's will but if you seek Him you will find Him and the peace, joy, comfort and stability will follow. It might take a little while because I believe that it requires you to open your heart and mind and let Him in before He is going to answer your prayers. Your affliction may not go away but we have a God who is stronger than any of our problems even when we forget He is in control.


As a Christian I think we tend to act like everything is peachy and because we have God our life is a basket of (apples?)and our struggles are hidden from others for various reasons. We all want to present being happy, Godly people so others won't get into our box of secret problems that we cling to. Your happy baskets are fake people, we all struggle and have very hard times and don't share it with anyone in the body of Christ because we don't want our secrets exposed. Give that up. We could all build unity if we shared struggles because everyone has them. I could sit here and type about how
my life is perfect because I have God but I won't. It would be fake and in order for people to help you and guide you into Jesus's arms you have to be honest. LIFE IS HARD.

Start opening up with those around you about the trials of life and I think you will find some great encouragement and be led toward God. Fake gets you nowhere but depressed. So, in typing about trials and honesty, I have had a rough time lately focusing on the negative and not searching for the good things God is doing because of my trial. I feel like I am just waiting for the next ball to drop at all times and I certainly am struggling with peace and comfort. I have lost almost everything for the time being; my ability to drive and to just live and not just exist and it is hard. It is hard to know what you will face when you wake up the next day and begin to pray that you could just sleep through your trial. (FYI: that prayer never works. God has plans and there is no time for sleeping it away)

This sounds weird but I want to hear other peoples trials whether they are basic or big it still counts as a trial and it is nice to know I am not alone so please share. Life is not perfect. Live like it. Live like you have your trials BUT are blessed by God to share them with Him or maybe even heal you, you never know with God He does some crazy awesome things sometimes.

In conclusion, please pray for my mental and physical health because at the moment I just feel like a mess and pray that we can all put aside "God makes my life perfect" land and share with each other what we are facing. There is power in numbers and power in Jesus that we have only ever seen glimpses of.