blessings

It occurred to me that I usually post on fb or this blog when bad news is discovered and I do a LOT of complaining about my circumstances. Giving off a negative vibe with everything is not my intention. My life isn't all bad things and I have much to be thankful for so for you list lovers I am making one of the good things I have in life that I tend to take for granted.

1. I am blessed to have so much family support to get me through this one day at a time. I would be very lost without them.

2 I am thankful that I never went off of my parents health insurance and had to switch to my ex-employers. There is no way I could afford all of my health issues on my own and to add another blessing, my parents pay my medical bills for me and are not expecting any of it back. Not many people have this option.

3.I am thankful that my dad was blessed with a good job so I was able to take out parental loans to pay my bills when I lived on my own. No credit score crashes or interest to be paid.

4. Grateful that my mom is doing better than she was a couple years ago and has been able to drive me to appointments and help me when I need it.

5. blessed to have so much support from my church whether it is just through pray or the willingness to drive me all over that place for appointments when I need it.

6. exc.... oh and Jesus. I am blessed by Him too. exc...

In talking to a friend the other day I was reminded of how lucky I am to have all of these things while I am sick. Most don't have the option and have to work while trying to stay alive at the same time because bills need paid.

past memories/major verbal spewing of my thoughts

My current situation is bringing back a lot of my memories from the 2 years I spent on and off at Children's hospital. Some are good memories like American idol sock version or the time when everyone in youth group attached hand cut outs through yarn so I could hang it up around me and be surrounded by everyone or me being a stop for fast food frenzy and having like 3 shakes as a result. Chatham youth group was such a blessing, making me feel included all the time. It was a very special group of people that brought joy even on the bad days. As everyone graduates college and gets jobs a lot is changing and has been for awhile. I was always reminded that friends will come and go the older you get; friendship becomes harder to maintain as people drift in and out.

Memories of how things used to be become special. I had a lot of bad times as well and the struggle for treatments has always existed in my life. God obviously has a plan for my life given I was a little over a pound at birth and I have come really close to death on multiple occasions but He is choosing to keep me around for a purpose. Granted, I really don't understand why I am having to face these health issues right now and I was naïve to think it was all said and done back in 2010. Note to self: don't assume cause you are only walking the road but God is placing it. I don't know why I have to take this fork in the road but I am comforted to know God has my life in His hands even when I don't feel like it.

Currently some past bad memories are haunting me and trying to discourage me and I have to be honest, right now they are succeeding. It is so hard to be in this place again and no end in my direct vision. I don't want to face this again and have to give up years of life in the fight again. My mind falls to what I "should" be doing right now such as working, dating, and just having fun and enjoying my 20's with work on the side. I can't even explain how I feel right now about this whole situation. I know God has it but I sure don't feel like it right now. I'm worn and confused but God never said it would be easy and trials build trust so you would think I should be the most God-trusting person but it doesn't work like that. It's a battle. A hard battle but if nothing else I have heaven to look forward to when this life is over and I will finally be healthy.

bittersweet

I got a good report from my heart doctor for the first time since I got sick. My heart is currently in stable condition. I was beginning to wonder if I would ever improve and God did one of His famous "trust me" moments that I am so thankful for.

While I am beyond thankful for my heart being stable; I also find it a little bittersweet because that means that all of my current debilitating symptoms are from my failing nervous system. The issue with my heart could be improved with hard work but my autonomic nervous system has no treatment besides hydration therapy which obviously isn't enough. I am going to see a neurologist who specializes in this disorder on the 30th and I shall see if he has any suggestions but in general you can't fix your automatic nerves system to do things when and how it should. Rebel.

So, all of the facial burning, muscle spasms, body shocks, cold sweats, nausea, low blood pressure, exc. Is not going to improve very easily, if at all unless a miracle occurs. God does do miracles still so I am praying for that but trying to face the reality of it not being treatable. I'm hopeful that there is something out there that treats it and I am just not aware of it. For now, I am laying here trying to be thankful instead of upset about what isn't improving and focus on what God did for me today. It is a big deal to finally get to this point after so many months. God is good. All the time.

faith in fads

When you have a life changing illness without a cure most people grasp anything and everything in a desperate hope for a cure. There are situations where doing so is important (cancer) but not always. If you constantly search and "try" every little thing you tend to find that none of them work. Putting faith in the next "possible" healing treatment instead of God leaves you in a fragile state. God allows us to go through these illnesses for a purpose therefore, it is in his will to heal or not to heal and all we can do is accept and trust Him knowing He is our savior, healer, and redeemer. Seeking off the wall treatments and 100% believing they will cure and putting your faith in it leaves out the only thing that really can cure, God. I get asked a lot have you tried this? or this? or what about this? and currently I am doing the standard treatment for what I have and I don't put my faith in juicing and weird blended foods made into a ratchet shake and expect it will be the cure that I am want. Do I believe some of these things will help yes, of course but heal no. God does use things to heal us and could use juicing as a way of healing you since He can do what He wants and all but the faith has to come from God not the juicing concoctions or other things. I think God allows these trials to test our faith and to show us only He can do miracles. When we start trusting the next healing fad, we loose sight of God and His perfect timing. His perfect power to heal or just say wait and watch how He uses your suffering. once again I'm not saying the fads are bad and don't help because I have seen them work I am saying that along with them your faith in God has to be number one or the fads won't work because your focus is on the things of this world and not accepting what God has for you and what He will do through your trial.

nerves

I am one of those super weirdo people that does not care about having surgeries,needle stabbings,and ports exc. but this whole cardiac cath business on Monday has me nervous. For one thing, wires will be put in my heart. Wires and hearts do not go well together. Due to my autonomic dysfunction, when I have procedures it goes into super psycho mode and tries to do everything at once which includes involuntary movements and it makes me shaky and a whole pile of other things. It is not the procedure itself that I am necessarily concerned by it's how my nervous system could respond. Please pray with me on Monday and I know they have light sedatives in the office but are reluctant to use them. Pray that they will agree to it because a small amount is all it takes to relax the nervous system so my brain stops misfiring. So, yeah pray for me because I am not usually nervous but for this I am I don't want to end up having an involuntary leg movement during the procedure. Just something about it is makes me nervous