Keeping My Armor On

In honor of National and World Scleroderma Awareness day, I have decided to push through and write another blog post. Despite my pain, discomfort and fatigue, I am still Blessed. I am breathing on my own, able to eat on my own and I can still walk. That is way more than I was able to do the last few summers. Just when I thought I was getting better and stronger things changed. It's tempting to try to pinpoint when I started this descend back into the valley. I'm tip-toe again in the deep waters and the storm clouds are brewing. Each flare up is my battle, my cross to bear. Unlike the last 2 times, I know what I have, who I am and why I am still left here in this world.

I had a lot of ideas and plans this June for Scleroderma Awareness month as well as my Birthday, being it is also in June. The irony is having all these ideas and plans not working out because of the subject which is me growing older in this disease. That and me forgetting who I am, what I have and why I just can't "go home". God has a plan for me but I need to get on board by trusting in Him. I need to remember my armor always not just on the days of battle. If I don't I am left vulnerable to attack and eventually all of the small attacks avalanche.

I must remember that I can always count on JESUS, Jehovah Jireh! He is my provider in ALL things! No longer will I let anxiety and depression suffocate me. Even as I feel each muscle, tendon, ligament tightened to a point where my skin itches and burns with pain I will keep marching. I must let my suffering be in silence because I have been here before. I no longer want to discourage my dream team. I'm here still for and because of them. Yet I will keep sharing my journey through this darkness so that my other warriors know they are not alone! My Emmanuel will never leave us. Faith is the certainty of a God above all uncertainties.

No matter what happens to my body I will trust my Heavenly Father and serve Him until my last breath. Scleroderma may take me out of this world but JESUS is walking me home...

HAPPY WORLD SCLERODERMA DAY!

https://open.spotify.com/track/68jDcAoxBfn7Tu9SUt38d9?si=uez1cSy1SxixA8vbLhNPgg

https://open.spotify.com/track/33AwnZl99mjxjNjMIbflbH?si=0tUD9kHFRKauPnFMmqIONw

A Gardener and His roses

I don't really like sharing what goes on in my marriage but I feel like I should. It is only because my relationship with my husband has been a big part of this journey. We have been through so much together and it wasn't all from this battle with Scleroderma. We have lost a baby, our angel fur baby Shippo and my father in a span of 3-4 years. We have had our fair share of hard times.  Aside from that I must admit that I was a terrible girlfriend. I had a lot of self esteem issues and I struggled with depression. As a result I of course became an alcoholic and I abused drugs to numb the pain in my heart. I always pushed my then boyfriend away because I never thought I deserved him. (See my other blog for more on that saga! http://jmbaezwedding.blogspot.com/p/beginning.html)  All that we have been through certainly made us stronger as a couple. I have and will still say that God has definitely shown me His love through my husband! Yet our struggle with my battle has taken a toll on us both.

After my last big flare up a couple years ago, I have lost sight of the Truth and allowed myself to get swept up in the lies of the enemy yet again. Losing my job, dropping out of college and seeing all of my hopes/dreams crumble before me these past few years has broken me to the point of giving up. I started to lose my faith. I really felt like I was so useless. I was embarrassed and ashamed of all that my husband and also my mother have had to do to keep me going. If only I was content with just being functional. I just couldn't do that because all of my live I striven so hard to make something of myself. To be an asset to society but I always fell short. It was almost like self sabotage. Still I would get back up and keep trying. All along my husband was there being so supportive as much as he could. I never really appreciated him for that until now. To make matters worse the stupid mistakes of my past finally caught up to me and it caused a big wedge between my husband and I.

Scleroderma has robbed me of so much! I cannot do nearly enough to call myself a wife or a woman anymore. All of my lack has put me into a deep depression along with anxiety and I of course took it out on those closest to me. The meds definitely did NOT help either. Steroids turned me into a short-tempered mess! My EX doctor tried putting me on anti-depressants but I hated the way they made me feel. I see them the way I see any other pain med I have been on. You take the pill, it starts to kick in so you don't feel pain for a little while. Then you hustle and try to do all you can while you can before it wears off. Then once it does and you "come down", you feel all the pains and aches you SHOULD HAVE been feeling while you were being functional without the pain. It piles up on you because you forget when to stop or slow down. With Scleroderma it makes a liar out of you and you even forget who you are. You have a good day and feel "normal" than you pay for it. But not just you, those around you pay as well. They have to pick up your slack every time.

The hardest part is choosing what activities to get into because you know the consequences. It's hard not to be selfish, to not have pity parties to just be content with the fact that all your going to do today is hopefully get out of bed and eat a full meal. A meal that if you're really doing well, you have made for yourself. With those choices comes choosing when to leave the house and who to spend time with. Lately for me it has only been my fur babies, my mother and my husband. Scleroderma also robs you of many so called friends. Its understandable though. Everyone has their own lives, their own problems. We also live out in the "somewhat country" so that makes it more difficult for people to stop by. Yet even if they did, I don't even have the energy or the enthusiasm to receive them. So guess what happens when I need companionship, attention and extra affection? I start "expecting" it all from my poor husband. For a while I felt like it got to the point where he couldn't wait to go back to work, he started staying late almost everyday and even spending weekends with friends. It hurt so much but I knew why. I was suffocating him and draining the life force out of him. All of that plus he had a difficult time forgiving and trusting me after all of my past stupidities. There was a point that our marriage was pretty much over!

Then God proved himself faithful as always. He held us both together because we both put our faith and trust back into Him. I forgot to look to my Heavenly Father to meet all of my needs for healing, companionship and even financial stability. I hope that my husband is also seeking Him first as I am trying to. In the morning I am going to his work with him so that later we can go to our first counseling appointment. Sometimes I wish I could just find the right pill to fix my crazy brain and heart but I know that the only fix is JESUS son of God! He is the cure for everything! Sometimes it doesn't happen all at once and right away though. Sometimes its like He is a gardener and we are his rose bush. He is pruning and stripping us of everything that holds us back from who we are truly meant to be. Not only for ourselves but for each other. That reminds me of the first gift my husband gave me when we were dating. A glass rose that reminded him that the beauty he saw in me would never wilt or fade (his words on the Christmas card he made me, so romantical right??). I must believe that to be true because he still loves me after everything I have put him through and after all Scleroderma has done to my body.

My First Scleroderma Walk 2018

I finally got all of my pictures edited and ready for upload! I had a great time that day despite almost passing out. I am so glad I went and I didn't pay for it as much as I thought I would! I am so looking forward to next year's walk! To be honest I believe that JESUS is the only cure for this and all diseases. For me it's not about raising money as it is about supporting other warriors. I loved being able to meet them in person! I'm in a FB support group but seeing warriors and their loved ones face to face is something extraordinary. I love how many of the warriors had big groups of supporters with all their shirts. I hope that I will be able to get the word out much earlier next time so all my peeps can be there. What I loved the most though was being able to pray for them! Since battling with Scleroderma, it has definitely helped me to empathize with other people and lose the fear of approaching people for prayers. It can seem awkward as I myself have not received complete healing but that doesn't shake me from trusting that JESUS will cure me! I know this to be true because again as I type I receive confirmation! I have my "Instrumental Flow" playlist on shuffle and that same song "No Longer Slaves" is playing right on time. I better get to sleep! I have a lot I still need to do. It's been rough playing catch up and I don't know if its because I'm getting old or all the meds I've had to take or what but my memory isn't what it used to be. It seems like I'm always climbing uphill and getting lost at the same time. It's been scary at times, I wonder how I manage sometimes. I thank God for the help of His Spirit and for Google Keep! Hope I can remember to post everything! Good night, sweet dreams and God Bless!


https://www.facebook.com/pg/aggelos610/photos/?tab=album&album_id=2188679204481896



https://open.spotify.com/track/0kRuVh9BAS6euDNj2DgndF?si=ydAyES4jTyeLSLgoTgQ1DA

http://www.scleroderma.org/site/TR/SteppingOut/TexasBluebonnetChapter?fr_id=3762&pg=entry#.WxY0REgvzD4

Fighting From Freedom

It's definitely been an eventful weekend! There is so much going on already and this month just started. Don't get me wrong, I certainly appreciate any moment I am out of my bed let alone my house! Even in this brutal Texas heat I'm loving my freedom from the flare up monster! I am trying to stay grateful because if I don't, the pit of self pity is a slippery slope. Being able to go to my first Scleroderma walk was amazing! Even still, as much as I try to focus on staying positive especially after the past few weeks of not having enough Bible study or quiet time, I can't shake this weird tightness in my chest. At first I thought it was just the fibrosis but my lung doc gave me the all clear. I even tried blaming it on the triple digit weather. 

On the way to the walk Saturday I pushed myself to get up and go despite the usual aches. My pain pill finally kicked in and I did okay until high noon. I was nauseous the whole time but I tried my best to ignore everything just to keep going. I knew I didn't eat enough but I was just avoiding the inevitable. I was on the verge of syncope but thank God for my quick thinking husband and friends for taking care of me!

I beat myself up so much when things like that happen. I know I should take better care and my curse is that I hate myself for my weakness. I even know that it is a cycle that I keep spinning. I realized fully last night as I tried to let myself drift into sleep. My crazy dream I see now as I am typing, was God's way of revealing it! In my dream I was talking to myself but my other voice was deep and scary. This demonic version of me was mocking me, speaking negativity and cursing me. I remember feeling the tightness of my chest as this demonic me was holding me down trying to steal my breath! Yet the true me, the child of God, the apple of His Eye warrior princess was putting that fraud in her place! I don't remember word for word the exchange of words but I do remember being fearless! I also remember specifically saying the Bible verse of JESUS perfect love casting out my fears. Afterwards I slept soundly until morning. 

It was the usual slow Sunday morning but I was still able to make it to church. I am so glad I did! I kept receiving the same Word again and again. That very same verse was in my JESUS Calling devotional app that I post to Facebook daily. Then it was the worship song that inspired my art worship post to my Instagram. Then Pastor Matt preached about that good intentioned quote that people say about God not you letting go through things that you can't handle being a lie. It is a lie because I have been in that darkest place many times where I have wanted to give up. Time and time again God has  rescued me and kept me through it all. The passage Pastor gave was Ephesians 5:14-21. As I went back over it on my phone Bible app I scrolled up to verse 10. At this very moment I am recalling another important passage from Ephesians which is in chapter 6. All along deep down I always knew I was my own worst enemy but that is a lie too! If I ever dared to hate another one of God's creation as I have hated myself I would definitely be guilty of murder because JESUS said hatred is the same as murder. I understand now completely that this demon that was trying to deceive me with my own identity was not me at all. I told my husband that I wished I was as bold as the warrior me in my dream. He said I am but maybe I needed that dream to show it to me, kind of like a mirror (another verse comes to mind now!). God has given me the authority, strength, power, boldness, courage and everything else I need since I was formed in my momma's belly. So many times have I heard that in a sermon, testimony or from encouragement from a good friend yet I never truly believed it or tried it out in my waking hours. That brave woman in my dreams is the real me and the enemy has done all that he can to keep her in bondage with his lies. The war has been won through Christ's work on the Cross but the battle wages on! I know the enemy is going to keep trying to attack me but now that I have seen first hand my armor, shield and sword in use he will now be the one afraid. I am no longer a slave to fear for I am a child of God!

https://open.spotify.com/track/63SF10lPoWA71bDYYzxfUs?si=iWWA-MNGRYWJxqqA3tQpTQ

SWC: A New Blog and the Same Hope!

June is Scleroderma Awareness Month

As I am typing, June 1st is almost over. With that said, I have finally decided to make a post in this new blog. Scleroderma Warrior Chronicles is going to be a place where people will learn about this disease and get tips on how to live with it. Last year for Scleroderma Awareness Month I tried posting daily about my life with Scleroderma but the irony of trying to keep up with that was laughable if not ridiculous. I'm going to try it again this year but things will be different. I'm going to do all I can but this time with all the strength of my Heavenly Father. He is always my inspiration.  The past few years have been tough but I'm still trucking. I'm on the mend after being bed ridden and atrophied. I can feel myself getting stronger and weaker at the same time. I tend to push myself beyond my limits. I feel like I've been stuck in some weird cycle only this time around I am seeing things from a new perspective. I am going to try my best to apply all that I have learned. What I have been through so far has not been in vain even though for a long time I thought otherwise. I won't let it be because with what I know now I will use to share with others to help them in their struggles with this or any disease!

It is now June 2nd, a new day with the same hope I have held onto throughout my battle with Scleroderma. I'm constantly tired and in recovery of muscle building. Every day is a different kind of pain but my hope in Christ remains. I refuse to live in fear of the mornings like I once did, avoiding going to sleep because of the new pains waiting for me. Instead I am excited because I am going to my very first 5k for Scleroderma. I never imagined myself going to one when I was well (eons ago) let alone now with my limitations. I don't know if I will be able to walk the whole way but I will be there! If all I can do is stand at the sidelines and cheer then that's what I will do. The joy of the Lord IS my strength and I am overjoyed that this year I am no longer a prisoner in my own home. Scleroderma has definitely taught me to appreciate the little things in life and that's what I intend to do. I hope anyone reading this will learn something from my life, no matter how small because that's what keeps the pain from being in vain!