Day 4&5 - Scleroderma Awareness - Attack of the GERDS

Another late post yet again. This time what set me back was a GERD attack.

Gastroesophageal reflux disease (GERD) is a chronic digestive disease. GERD occurs when stomach acid or, occasionally, stomach content, flows back into your food pipe (esophagus). The backwash (reflux) irritates the lining of your esophagus and causes GERD.

When this happens, it triggers a flare up. Saturday night I ate a chicken sandwich. I knew it was a bad idea but I didn't want to make my husband cook. Sunday morning I tried my best to make it to church. I had a very rough morning and we were running late so we didnt get to have breakfast. I just ate a small snack pack of peanuts and cranberries with an Ensure juice. I was hoping that would be enough but when I got to church and took my morning dose of Prednisone, things got pretty bad. The combination of my sour stomach from the chicken sandwich and taking these pills messed me up. I had to leave church early I was in so much pain. We stopped by Walmart on the way home to get some food for the day. I couldn't get out of the jeep. I ended up puking everything I ate that morning. By the time we got home I was so weak. I slept the rest of the day. This morning my stomach was feeling better but because I didn't take any of my meds or vitamins my body was in complete lockdown.  I think I even had a fever my body felt like it was on fire. It really takes a lot out of me. I barely wanted to keep up with this blog. To be honest, when the pain gets to this point I'm just about ready to give up. I don't know how I manage to get into this drama. I am just grateful to have my husband and my mother to keep me going. 

Day 3 - Scleroderma Awareness - The Rain

Of course I am super late posting today's blog but that's what happens when I try to do anything consistently. Today started out cool but I pushed myself too much as usual. The rain never helps and for some reason it makes me feel horrible. They say the rain doesn't have any effect on our bodies but tell that to my achy joints! Every time it rains I get super locked up and can't move my limbs. Just to touch my own face is a feat. I hate taking pain pills but sometimes I have no choice. I can only tolerate so much pain. Occasionally I let it all get the best of me and just lay in bed feeling sorry for myself. I get this malaise that turns into a depression. I know someone is praying for me because throughout the day after fighting the many naps I couldn't help but to take, I was able to pull through. My sweet pwince put some worship music on for me and then I finally got the strength to open my Bible. Its super heavy because its a study Bible so pulling it of my shelf can be a work out for me. I'm glad I was able to read and write in my journal. That always helps me feel better! I got a second wind so I decided to finish my cousin's grad gift even though I didn't get to print it and send it to her like I wanted. Still, I'm glad it is a finished project! Its supposed to rain again. I'm not sure how I'll feel in the morning as my sleep cycle is always out of whack. I really do hope to make it to Church! If not I will definitely try to read again. Reading God's Word and being in His Presence makes any rainy day so much better! Good night :)

Songs I heard today:

https://open.spotify.com/track/3DBNx9jWbF48QyqhEjA2OG

https://open.spotify.com/track/4UfagUzrUJ5ytpHfiAXN2s

Day 2 - Scleroderma Awareness - Dealing with CFS

Not really sure what to post about every single day for a month but I will definitely try my best. I suppose I can talk about my appointment today. I'm going to my primary care doctor (which I'm not very fond of) to get some tests done to see if I qualify for portable oxygen. I used to have it before but I started doing so well for a little while that I didn't need it. Unfortunately I'm going to need it again because lately I get really tired very quickly. "Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest." CFS is a very big part of my frustrations. It holds me back from so much. There are days when all I can do is lay in bed all day. Sometimes I feel like sleeping makes it worse. Having my oxygen machine makes a bit of difference but I'm hoping the portable oxygen will give me more days away from my bed!

Day 1 – Scleroderma Awareness Month

It’s about 6:30 in the morning, as usual I’m wide awake. I hardly sleep a full eight hours at night. Normally I just lay here in my thoughts which end up driving me crazy with frustrations over all the things I wish I could do or could have done. I figured I’ll make some good use of this time awake by starting my blog back up again. What better time to start then on the first day of Scleroderma awareness month! So I’m going to try my best to post something every day about this condition, disease, hell or whatever you want to call it.

Definition

Scleroderma is a progressive disease that affects the skin and connective tissue (including cartilage, bone, fat, and the tissue that supports the nerves and blood vessels throughout the body). There are two major forms of the disorder. The type known as localized scleroderma mainly affects the skin. Systemic scleroderma, which is also called systemic sclerosis, affects the smaller blood vessels and internal organs of the body.

Guess who has “systemic sclerosis”? It feels like it affects every single part of my body. There is not a moment where I am 100% pain free. Along with the physical pain is the emotional and mental anguish of dealing with the pain and watching my body get slowly disfigured. It’s very difficult right now on so many levels, to write about this. I never had a problem before with writing about my condition or anything really but this past year has been really tough. I got to a point where I didn’t want to write anymore but God has always been putting it in my heart to write. I never knew why or what about until now I suppose. He has held me through all of my struggles, especially with Scleroderma. Without Him I definitely wouldn’t be here still. I don’t know what these blog posts will accomplish but He does so I’m putting my trust in Him to share about my life with this disease. I hope it helps someone else who is struggling because I have a feeling that it’s going to be some sort of healing process for me.

Dream of Oppression and Hope

I had a dream the other night that the world was under complete oppression, almost prison state. We were told what to eat, what to wear, when to shower and we had no belongings of our own. I was digging holes in the ground trying to hide toys and different things because we couldn't keep them. Triple H (yes the wrestler ^^) caught me trying to hide some wooden blocks i found. The other people around me he had shot. He sent me to a place full of skeletons with rotting flesh. I saw faces of agony on them. I could hear people crying and wanting out of their miseries. I was overcome with a boldness i never knew i had. As if it was from a time long ago. It all came rushing back to me. This is all temporary i said. God is still with us. He is eternal and He does not change. Jesus Christ is true freedom! They can destroy our bodies but not our spirit! After i spoke there was a quiet overwhelming peace. I woke up...

Healing Process

I went to my routine visit with the rheumatologist today and received lots of information about myself.  I learned that the reason why I have premature menopause is because of the chemotherapy I went through over 5 years ago. For a long time I thought of all sorts of reasons why I can't have a baby. I even let myself believe the lie that there is something wrong with me or that I don't deserve to have children. The doctor said there were no regrets about putting me on Cytoxan because of the positive effects it has had on my body. She even said that I am doing really well for having Scleroderma and my case was in a league of its own. Of course, there is another BIG factor at play! The doctor mentioned that other cases didn't do well at all with all sorts of different treatments. All I could tell them was that I had a lot of help. I almost felt bad because I only said that my faith was what got me through such a trying time when this disease was at its worst in me. I should have just came right out and said it: without God I would NOT have made it through those painful years! Instead I said it was MY faith. Then it came to mind what Jesus said every time He healed someone:

He said to her, "Daughter, your faith has healed you. Go in peace and be freed from your suffering."  I know in my heart those doctors knew where my "help" comes from so I don't have to feel guilty about not speaking His Name. Still, I must share it with everyone else. JESUS HEALS! Sure I could believe that the Cytoxan did its job but at what cost? I don't deny that it was a tool that was used but all GLORY, HONOR AND PRAISE goes to my HEAVENLY FATHER! He has been so good to me and has been carrying me through so much.  My  life has been changing so drastically, especially in the past 10 years. I CANNOT deny Him or what He is doing. Remembering all this just keeps my faith growing even stronger. The doctor said right now my body is doing better but it could change in the future since it is a chronic disease. God says He satisfies my desires and renews my youth like the eagles. My desire is to have a child and however it happens I know my faith partnered with GOD'S GRACE will work it all out. I am not going to be fearful about my future health status because no matter what changes, on CHRIST THE SOLID ROCK I will stand! THANK YOU FATHER! THANK YOU! THANK YOU! THANK YOU!

Mother's Day Anguish and Breakthrough

Happy Mother's Day to all the mommas out there!! :D I have to admit it has been a bittersweet day for me. I have been dealing with this inner turmoil I've been having about well, not having any children.  I just found out a few weeks ago that I have premature menopause.  I wanted so much to believe I was pregnant all the way until the day of my sonogram.  I procrastinated going because of memories of my past one. Instead of seeing my lifeless child, I saw complete darkness. I honestly can't say which felt worse.  What I do know is that I thank my Father God for giving me His Son, Jesus Christ!!! He gives me Hope and Reassurance daily!  If I didn't have Him in my life, I would have completely given up so many times.  He has shown me that this life is temporary and that the next one is where all the really good stuff happens.  With Him I know that my first child is waiting for me.  I didn't get to know the pain of child birth but the pain I did have is enough to appreciate having a child in my arms.  I haven't been able to yet but I will have an eternity to never let go!  Only God knows why I can't have children, whether it's because of His Will or because that thief satan is futilely  trying to rob what's rightfully mine.  Either way I know, trust and praise my Heavenly Father to help get through this.  After hearing just in the past few days, of all the horrible things being done to so many children, it has caused a burning anger in my heart! Part of my turmoil was frustration of so much awful in gratitude for their lives but not any more. I have come to the conclusion that I am going to do something about it and turn that anger into a Righteous anger.  I thirst for justice for the children in this world and I pray that God will give me the Wisdom and Strength to make a difference.  The enemy the devil hates children because of how much Jesus loves them.  I remember when I was younger I would always have dreams of hiding , trying to protect or searching for a baby and I never knew what they meant. Maybe that's part of my purpose, as well as making sure my loved ones get saved.  Slowly I can see my life starting to come into focus and I am starting to get a grasp of what God has planned for me.  On the agenda is teaching the Gospel to my kids at church, taking the Gospel to my kids in the Dominican Republic, then fostering and adopting lots of kids of all ages for the rest of my life!  I have learned that we are all God's adopted children and whether they would have been from the womb or not makes no difference.  Everyone wants to be and deserves to be loved, especially children.  I thank You Father in advance for entrusting me with the lives of Your children, AMEN.

Psalm 113:9
He settles the childless woman in her home as a happy mother of children. Praise the LORD.