support....it exists!

I feel so blessed "this time around" to have so much support and visitors. I don't feel like I really had much of it in the past and it makes such a difference to my mental well being. This situation can get kind of depressing at times and very isolating so to have people putting forth effort to ensure that I don't feel like I fell off the face of the earth means so much. I have had enough people ask where I am at now and what the "plan" looks like that I feel the need to put it here. First of all I can't have a plan because my body does what it wants but we wait and see what this new heart medication does and I continue to do PT to try to train my nervous system over approximately 2 years and doing I.V. Fluids through my port daily. That is what we are doing to try to at least improve the POTS and autonomic dysfunction. It is unknown but doubtful it will go dormant since apparently everytime I get sick it goes postal but hopefully the symptoms can be managed better over the next 2 years. Yes, 2 years. It is a non-curable, debilitating syndrome. As far as my migraines go I see my 3rd new neurologist on July 7th who specializes in using Botox injections to treat migraines so that looks like 5 billion kinds of fun. lastly, my food intake is not good and I still have stomach acid in my blood so I go see my GI on July 8th so he can figure out what to do. This battle isn't even close to being over yet but I am not alone. I have God who is all powerful and I have a good support system so forward I go.

epiphany

We are going to pretend like I didn't have to google the word epiphany Mk.mk. Anyways, I had one of those things. While pondering what God's plan is for my life and all these issues that I have had my whole life it suddenly hit me. I now know why. The answer is the same for everyone on this earth, give God glory. How He chooses to do that is up to Him and He has every right to allow life challenges because I don't know but maybe through this others are giving God glory because of my struggle. The more the merrier. He is also not forsaking me through this but "trying" to teach me so 2 birds with one stone! All I'm saying is that everyone is to bring glory to God and sometimes He does it in ways that don't make sense to our closed off little minds.

That point

When dealing with any kind of chronic illness there is always a crucial point where your enthusiasm to fight leaves you and you are just kind of left with this empty shell and you have to decide what to put in it. Some people give up, others work really hard to regain their enthusiasm and some people try to accept the circumstance and put one foot in front of the other. I have now reached the empty shell point. I'm tired of fighting so hard to get shoved to another Dr who can't help me. I'm tired of everything and my will to really take this head on is gone but giving up is not an option so I am choosing to fill my shell with a lot of Jesus and just go through the motions and do what I have to do to get better. Nobody said I have to be thrilled about the process just that I have to do it. Last night I decided to accept my circumstance and trudge ahead after being up every 2 hrs with nausea and muscle spasms from my faulty nervous system. It might have to go one hour at a time but I will get stronger even if it is done by going through the motions and Jesus pushing me the whole time. I knew this point would come because it always does and here at almost 7 months in it hit. Thankfully the God we serve is all powerful and loving enough to suffer with us.

crazy?

There is nothing worse than when a Dr doesn't believe what you are saying about your diagnosis. You go seeking help for pain and leave with no relief and now more emotional scars and doubting everything you have been treated for for months. It leaves you feeling like everything could just be in your head and you are crazy. Knowing von loudly I know this can't be in my head but to hear this doctor say that my electrophysiologist must be wrong about my diagnosis because it isn't presenting itself normally is UN-called for. I don't do anything normal so you have to take that out of the equation. I am so frustrated with everything, sometimes on the journey through life you just want to go to sleep and have it be over with. If this next neurologist is a piece of work I will be running out of options. Please pray for my mental and physical health but mostly mental as this finding a Dr who believes me and I isn't too afraid to take my case.

pain management.....or not

My appointment today ended in frustration, the Dr was skeptical about all of my medical conditions and doesn't feel comfortable putting me to sleep or injecting Botox because the Botox it paralysis a small amount of my nervous system and that could be bad given that I already have nervous system issues. I do have an appointment with a new neurologist on July 7 so keep praying I need everything I can get

pray request for tonight

My emotional state is like a pendulum but for tonight I ask for prayers as the fact that it has been 6 months of dealing with this and it hits me like a ton of bricks at times. I miss my independence and just being able to do simple tasks such as walk up stairs or going to Walgreens without having to take a ton of meds before and crashing when I get home. Even taking a bath or shower has been taken from me and I. Have to have a babysitter if either one of my parents will be gone. I need help at times walking from one room to another and going up stairs I have to stop half way while the blood drains to my feet and I wait for my heart rate to go to about 145 in order to get blood back to my brain enabling me to walk the rest of the way all the while my blood pressure is dropping more and more so by the time I make it to my bed I am lightheaded and can't catch my breath. I walk slower than a snail and I have to sit frequently so my O2 and BP can compensate for whatever my heart is doing. I'm 22 and all of this is so hard. I know God is here and helping me but it is still a tough daily battle that I am struggling with right now. I'm 22 going on 90 and I'm fairly certain that is not how it is "supposed" to go according to me of course but God has other plans. Please pray for mental and physical strength in this battle where I don't know what tomorrow or really 2 hrs from now will bring. Thanks in advance for all my prayer warriors out that.

God whisperer

there has been a lot of moments in this journey I have been a 2 year old and said I don't wanna and dug my heals in for God to deal with. One would think the human race would have learned by now that we won't win but we are idiots. In those moments I am pretty sure God is like no really you don't have a choice and puts a pinch collar on me; now you would think I got the point but no. He then begins to drag me through my storm and everytime I complain I get a chhh, telling me that He holds my life in His hands and have it to me and can do as He pleases but is also suffering me so I am not alone. Chhhh don't let Satan get to you. Chhhh it is not the end of the world. Chhh I am with you. Chhh you are not listening. I feel like I am blessed with a God whisperer at times that guides me back when I become distracted by the trials of this life. One of these days , when He returns to get me I. Will no longer be chhh'ed but hugged and what a great day that will be.

Gods plan

I had a very special visitor see me on Wednesday and while she was looking through my baby book she mentioned that I have always been a fighter. I didn't say anything in the moment because I had to ponder it but it hit me in a good way like a ton of bricks. I entered this fallen world as a 1 lb 8 ounce fragile baby who barely made it through the beginning of life let alone my battles since.

I began to think of my life as a whole and God touched my heart and I could feel His presence as I thought about the fact that He has had to have His angels surround me for my whole life thus far and He has never left because if He did I would not be alive today. I don't know why I have had to and still am going through the trials that I am but I know the God who sustains me has big plans for my life and my story. I don't know what that looks like and I may never know because He might choose to do it in a more suttle way that I can't see but there is one thing I do know for a fact: it is not in vain.
This has given me so much peace and although it still sucks and is hard to make it through each day keeping this knowledge in my mind gives me the drive to keep on going in order to let God use me for His plan without me getting in the way. I love how He uses people to share his thoughts with us. It shows what a mighty and all-powerful God we serve.

PCP and cardiology update

I am very happy with my new primary care Dr, he is very thorough and I will be seeing him every six weeks unless something weird occurs. I said ok I will see you in a few hours! I think he will actually be able to manage my case which is what I have been looking for cause sorry docs I know it has been drilled into your head that if it looks like a zebra then it's a zebra but I don't follow that I'm like a bigfoot. Yes, an unknown species.

I then saw my cardiologist who said that my current heart medication is not working and I need to switch to a new one. She said if I didn't have asthma then I would not be having issues because I could take normal beta blockers but since I have the asthma I have to take a special kind of heart med that doesn't work as well. If I didn't have.....hmmmm that sums up my life pretty well!!! She also gave me my last option for nausea and she said (and I quote) "if that doesn't work I don't know what the f*** to give you" 10-4 doc copy that. She's crazy but a genius and I love her. She is also changing my IV fluids around to help keep my BP up and to help stabilize my heart rate. Please pray with me that this works because I am limited on options compared to most and never do anything the correct way.

I have physical therapy coming to my house to help train my nervous system at home since I am to rest as much as possible. I know God has a plan for my life and all of these medical hiccups play into His master plan which seems really confusing right about now but I am thankful He doesn't leave me even in my moments of doubt and discouragement. I just have to remember his love never fails.

food wars

so, my body has rebelled against food for a few months now and the Dr's solution is to just eat. Now, if I could do that and have it stay down we would not have to be discussing the issue. Derp. Sometimes I just don't understand.
on an unrelated note my dad worked from home so he could "babysit" me today while my mom was gone. Yes, my life has become that pathetic. Anyways, one of our conversations went like this:

me:"I want to go upstairs"
*that usually requires someone behind me so we start to go up and I have to pause half way so I don't pass out*
dad: poking me while we stand in the middle of the stairs.
me: what are you doing to me
him: smiles
me: I don't think enough blood is going to my brain today
dad: " that has always been your excuse!
yes, smarty pants.

I see my new PCP and my cardiologist tomorrow and I will update when I get home.

change of plans and life lessons

So, my body has decided to go backwards giving me fevers of 101 and making me feel really crappy. I am still dealing with a pulse of about 110 while laying down and about 125-165 with O2 drops down to 82%. I mentioned previously that my pulmonologist wanted to have home health come out and do a walking oxygen test with me but that all changed with the fevers. I now must be at DePaul at 9:15am tomorrow morning for a chest x Ray and a walking oxygen test and then an appointment with my pulmonologist. We are praying it didn't morph itself into something super crazy but  it is a possibility.

Sometimes I feel like I can't catch a break but then I realized that Jesus didn't either because He had the weight of knowing He would suffer on the cross for us and his own father would turn on him in that moment and he had to carry that weight while being directly tempted by Satan and enduring a lot of suffering on this earth so why do I deserve to catch a break? I don't and when I get one it is an act of mercy, not a right.

This leads me to some life lessons I'm learning at 22. A lot are hard to accept at my age but I guess God is teaching me early. So here are a few I will share so you can think on them too:
1. Just because you are young; you are not exempt from the struggles of this world
2. God never leaves or gives up on us even if we give up on Him and ourselves
3. ALL suffering has a purpose even if we don't know what it is
4. GOD has NO obligation to reveal the cause of our sufferings to us, it's called faith
5. Life is hard
6.GOD is faithful. Always.
7. We are never alone
8. Suffering is going to make heaven that much sweeter
9. GOD becomes more mysterious as you try to connect things and you stand amazed at how He created us and the pure power He has to do that alone let alone everything else.

struggling

I woke up today not feeling well at all with a temp of 99.8 and feeling very short of breath. My O2 drops to 85% sometimes and my heart rate shoots up to 150 when I walk but returns to semi-normal after I sit awhile. Therefore there is a good chance that the oral antibiotics aren't working considering the last 2 days weren't this bad. My pulmonologist said that as long as when I'm laying down and my oxygen stays above 90% I can wait till tomorrow morning for him to call home health out to do walking tests with me to see if my O2 drops, if it does I will be on home oxygen and if I have a fever I will probably be put on IV antibiotics. So, obviously I am going the wrong direction which is sucky.
on a different note, I have been asked on a number of occasions lately if I ever ask why me. I always have a moment of reflecting with it because until it is brought up it never even crosses my mind. I don't ask why me because I wouldn't want anyone else to have it for one but also it is the hand I've been dealt and we all get dealt a hand and this is it. It is a waste of time to sit and contemplate why me because God is not required to give me an answer and it brings more hurt and wastes time waiting and thinking about something that doesn't really matter anymore.
I will say I am very tired of fighting and have cried out and contemplated why the journey has to be so difficult and how done I am and why nothing can go right and the exhaustion of it but why me? No.


http://www.youtube.com/watch?v=DXDGE_lRI0E&sns

the long waited story

I haven't been on the computer much lately because sadly it takes energy that I don't have. So backtracking we go: every night 2 weeks ago I got low grade fevers that would increase each night. Good times. I attribute everything to my nervous system these days so I figured it was causing it until Sunday night when it hit 102 and I felt more off than normal.
while keeping my pulse ox on while I went to the restroom I was on my way back to bed when the room was spinning I looked down long enough to see my oxygen at 85% and my pulse at 140 before I was out hitting my head on the hardwood floors. I came back to really quickly and knew I didn't have a concussion so I emailed my pulmonologist and he sent me to the ER. They found pneumonia and my Bp was in the 85/64 ranges and my oxygen was dropping so they decided to admit me to a step down unit from ICU. Once there my O2 was still causing issues as well as my heart rate so I was on every monitoring device possible and it was extremely dehydrated as well as a dangerously low potassium and magnesium. I was IV pumped full of 3 different antibiotics, magnesium and potassium as well as a ton of fluid boluses to help control my heart and Bp. I passed out a lot during Pt so that is always fun my vitals would drop out of the blue and with the gait belt they would hold me up until the wheelchair was behind me. They also are trying to get me to eat but it's so hard when the thought of food makes me want to puke, my cardiologist did not want the feeding tube but I have lost another two pounds so idk what the plan is for that. Currently I am at my parents house for safety reasons and really not feeling well from the pneumonia, antibiotics that make me feel sick and my tachycardia in full swing so that's a prayer request. Thanks to all of those who are praying for me, it's a long battle ahead and at times I want to give up but God isn't allowing it so pray for strength because I am beyond done. October until now is draining me mentally more than physically and not knowing what is ahead is scary because I don't want to be in this physical state anymore as it is and I have a long way to go and I'm sooooo tired and scared of the unknown even though I know God has it I struggle to trust him on a deep level vs. Going off of the knowledge of Him to get me through. Not saying knowledge is a bad thing but I want a deeper trust so I don't have to be scared of what's to come but for now I am and God takes me where I'm at so God, I'm done.

Important appts timeline

Most of you know about my appointment on Tuesday that is really important but this next week is filled with other appointments other than that and I could use prayer for all of of them and this will give everyone an idea of when I would know something new:

MON----my biofeedback instructor at 3:30pm
TUE---my very important visit with my electrophysiologist to discuss all my complications 1:00pm
FRI---I will get to see a pain management specialist for my migraines that are daily right now, my mom sees him and I have met him and he is very caring and one of the best. Eventually, I will be getting botox injections all the way around my head to treat them. I don't know how it works exactly but it has helped my mom a lot. It can take a long time to get the insurance to approve the procedure and then order the botox so it could take awhile before I actually get started doing it but I am beyond blessed that when my mom told his staff my story and they told him, he is so compassionate that he is working over to see me on Friday and it is almost unheard of to get in this early. Praise God. Pray with me that all approval will come through in a timely fashion and he can come up with something to help in the meantime.


Also, on June 19th I go to see my new primary care doctor who my pulmonologist recommended. Pray that he will be good with complicated cases and be compassionate and understanding of everything I have been through and do his best to make things easier on me.

The hands that hold the world are holding your heart

First of all, I apologize to everyone for not answering calls or texts. Sometimes, when  another set back happens no matter how big or small I can't take people. I know that everyone cares and wants to know if I am doing ok and hanging in there so I apologize for being rude and not responding to everyone who wants to help. So sorry.

I am going to go on a side direction really quick before continuing with  health crap. In 6 days I will be completely cleared of all driving restrictions thus making it so that I can drive on highways and go to my bazillion doctors appointments on my own. I am crying as I type this because on December 18th 2013 I lost everything. My ability to drive, my job, and all of my freedom; leaving me broke and thankful for parents that help out until our lease is up and I move back home. I lost my freedom of living outside my parents house and now I am headed back home on Aug 23rd; something I never thought or ever wanted to do. I may have lost a LOT but I did get some surprises on the way and this on is a shout out to my mom. We might not have the closest relationship but she has made huge changes and has been able to drive me all over the place and I am so thankful that she can now do that and I am beyond proud of her for the changes she is making because they haven't been easy.

Back to my failing body. Migraines are back and I have been to the ER 3xs in 2 weeks for them and the ER docs start to get there depends in a bunch because they don't want to keep giving me stuff and I need to see a neurologist. Hey derp head, I have one but I can't see her for 2 months so I switched to a different one and when I saw him he said oh you are here for migraines they should have put you with this particular neurologist who specializes in headaches....that can't happen until July 17th which is all in my chart for the ER doctor to see. pause with me for a huge derp derp derp derpy moment......ok now once again my mom really came  through for me she sees a pain management specialist who does botox injections (which the other neuro said they would end up doing after July 17th)she gets hers done there and her doctor is very very nice and my mom was able to call in and explain my hot potato patient aka: screw you patient status and they said oh no she can't wait that long there is no way especially with all of my other ailments because they will work together to fight against me so June 13th I will have an appointment with him but it can still take months to get the botox approved. He does do very strict medication monitoring so he could help me in the meantime.

My PT has been put on hold because my heart rate was going too high and I haven't been able to keep much food down and last time I went the therapist said she could tell I had lost weight and no more sessions until I see my Doc on the 10th of this month. So I finally feel like I am doing something right and this occurs. I was enjoying PT and felt hopeful for once in a veryyyy long time now I just feel sick, lonely, confused, disappointed and lost. The only thing that is keeping me together right now is that God is holding my heart and won't let go. So here is your super depressing update sorry about that, it's life I guess.