Back on the Road to Recovery - Scleroderma Awareness

Had the first set of injections to treat my arthritis.  So far so good I must say! :D I feel a lot better than I did when I was receiving the Cytoxan treatments. No nausea but a little bit of drowsiness. I'm even getting a better appetite! I really hope this new treatment of Rytuxan will replace the Prednisone. I can't wait to be completely done with the Prednisone. There are too many side effects involved. It seems like there won't be much side effects with the Rytuxan. I am just so grateful to be able to get out and stay out of my bed! I love that I can do more for myself now than I was just a few weeks ago. I don't know just how much I will be able to do but I have to be careful not to overdo. That is something I always struggle with. Even now I'm already pushing my body to the limits just because I can. I just can't help it. My mind and heart are just too much for my body to keep up with. That constant resistance creates so much frustration which leads to anger. Just like today, I was fixing up my little hangout area out on my porch and all of a sudden my left hand starts to give me problems. I'm wondering if its the medicine running its course through my body and I'm not giving myself a chance to heal. I just can't stop moving though. I fear if I do, I'll get frozen in a state that I don't want to be in. Where I won't be able to do all I have been created to do. The knuckles in my hands want to fuse which is the usual case for the arthritic. I feel like grabbing a hammer and smashing them so I can get them reset. Maybe I can get some bionic hands! Maybe I watch too many comic book shows. Like I said before, losing my hands could be the worse thing that could happen to me but a lot of terrible have already happened. Looking back I must remember what my Heavenly Father has brought me through. I believe in His miracle healing and His promises to me. He can reset the bones and joints in my hands. I'm sure it wouldn't be as painful or crazy as my way of doing it! I have to keep calm and believe that everything is going to work out. I'm not going to stop moving but God please help me not to sabotage myself!

Last Day - Scleroderma Awareness - My Cross

I hope that this month has shed some light for those curious about this disease but more importantly I hope that anyone who suffers from anything will see how good our Heavenly Father is! People might wonder why I haven't been completely healed. I still question it myself! I know that regardless of what happens I will get my new body one day! That is one of His many promises to me. If this is my cross to bear then I will bear it with honor for what my Savior has done for me. This world is temporary and so is this pain. For every hurt, struggle, hardship etc., my prayer is that it will show everyone that no matter what there is always hope in Jesus Christ.

Thy Will Be Done

Scleroderma Day - Scleroderma Awareness - Rest

It's been a crazy month to say the least. I have been REALLY aware of Scleroderma this month that's for sure! Last week I had my vacay at the hospital. We were going in to check out my leg and I ended up getting tested for all kinds of stuff. After tons of blood work and an endoscopy, it turns out I had some sort of fungal infection in my esophagus. Yay me! :P It was not my best weekend ever but I'm glad we finally got down to the bottom of why I keep getting sick and nauseous.  I am so grateful for my prayer warriors! I know God heard yall because despite the trials I dealt with while I was in the ICU, the doctors and nurses were amazing! Out of all of my stays at different hospitals, Christus Santa Rosa has been by far the best! Of course my dream team stepped in to fill in the gap! They stayed all night just about every night I was there. I know I said I lost faith in my doctors but those that treated me at the hospital really tried their best to help me get better. Unfortunately though this means more meds but at least some are temporary and I do feel like they're getting the job done.

I don't know what else Scleroderma is coming at me with but I know God has my back all the way. He always sends me hope when I think I can't hang on any longer. Everyday is an uphill battle. I've been trying my best to keep pushing and fighting. Then a good friend who came to visit me reminded me of what I really should be doing and that's leaving it all on the cross. When I rest in JESUS I have all that I need and I know I will survive anything that comes my way! Instead of trying to make the world aware of Scleroderma, I'm gonna make Scleroderma aware of Who my Father is! :P

Day meh whatever - Scleroderma Awareness - Web of Meds

I don't know what's happening to my body anymore. The more I push myself and the harder I try, the more I feel stuck.  I no longer have any faith in my doctors. It's not all their fault though, I was never good about keeping up with their orders. I never liked being on meds but I thought I didn't have a choice. I cut the list of medications the doctors wanted me to take very short. Its like they were causing more harm than good. Prednisone for starters is the only pill that helps the most yet causes the most damaging side effects. As soon as I miss a dose I become stiff as a board. Celcept is no better. Its supposed to help my lungs and skin but 1000mg is more than my tummy can handle. The fentanyl patch is just a bad joke. It hardly takes the pain away and stops me up. 

Earlier this week I started feeling sicker than usual. I couldn't hold my food down and would end up vomiting whatever meds I took. I also either hit or put too much pressure on my right leg. So here I am now in the ICU at Cristus Santa Rosa. I've been x-rayed, sampled, poked, prodded and jacked in. They've been very diligent in getting to the bottom of my infection. They even put a big needle in the side of my neck so a machine can put more medicine to raise my blood pressure. The nurses are doing a great job of taking care of me. My momma and sweet Pwince have been by my side through it all. God has been faithful as always! I am so blessed by the people He sends to minister to and pray for me! I know He will get me through this storm. I just have to keep remembering through the storm... 

Day 11 thru 15 - Scleroderma Awareness - Reaching out

After such a busy weekend, it has taken me about 5 days to recover. It's really difficult for me to write during this time because I am so sore and achy. I can barely move. The pain is so bad I just feel like disappearing. I don't have the strength or energy to do hardly anything. Somehow I still manage to let it get the best of me. I just lay here in my thoughts. Sometimes I can hear my heart beating and I imagine that it would stop. I wonder why God keeps me here just to be laying in bed. All I ever wanted was to live a life with purpose. I feel like such a failure. Am I such a terrible person that I deserve this torment? The more I push forward the more I pay for it. It makes me scared to keep trying knowing the pain that will come. Still l am going to be grateful for this disease. It has helped me see things more clearly. It has shown me who really love and care about me. It has strengthened my marriage and brought my mother and I closer together. More importantly it has forced me to slow down and reach out to JESUS! I see Him more and more everyday. I cried out to Him last night for mercy, to take me home cause I give up; in the morning I hear a knock on the door. As I was reading my Bible, a woman walked past my window with a Bible in her hand. My mom didn't hear the knock so she didn't answer the door in time but a flyer was left in the door. It said "Don't Give Up!". It was for a Jehovah's Witness conference. I don't follow that doctrine but I still believe that my Heavenly Father sent that message to encourage me. He can use anything for His purpose and glory even Scleroderma. My prayer is that I would be content in every situation. That my incapacitated state would be a blessing rather than a curse so that I can see God there and give Him glory even if I can't lift my hands.

Day 10 - Scleroderma Awareness - Beyond Blessed Birthday

I am absolutely certain that somebody was praying for me today! The enemy was trying really hard to bring me down. I woke up feeling surprisingly a lot better than I thought I would but I was still moving in slow motion. I almost didn't want to go anywhere today. I was starting to feel that darkness creep in that makes everything so blah. I knew I had to fight it so I reached for the Good Book to get a different perspective on things. I'm on Joshua 4 on my personal Bible study. Its about the 12 tribes making a memorial to remind them of how God got them through some really hard times. Then I read Psalms 8. 23, 97, 103, 107 and 108. I normally don't read that many at one time during my studies unless things are really "connecting". I'm glad I made the decision to read today because I am seeing another connection even as I type. After an awesome day like today I can see how making memorials of God's goodness can really help us out! Instead of a just a pile of stones we have so many ways to make them. Today for me it was making this collage. Its memories like these that I cherish the most and are definitely a reminder of my Heavenly Father's love for me through my husband, family and friends!

Day 9 - Scleroderma Awareness - Pressing Forward

Had a good day today. My sweet Pwince took me to San Antonio so we could get our hair dids together! :D Trying to get moving this morning was like climbing out of quicksand. I thank God for my husband because he tries his best to make me happy. I hate that I sometimes take my frustrations out on him but he's one of two people (the other being my momma) that I spend the most time with. They see me at my worst and my best. Still my husband is so patient with me and I cannot deny his love for me. He shows it in so many ways. I love that his prayer is always that we love like JESUS. If it wasn't for my husband, I don't think there would be a better way of knowing God's love for me. I really do feel like our marriage is a metaphor of how God loves and not just because the Bible says so. I love it when I notice the connections! I wish I could always keep that in mind when I'm tempted to sulk into one of my pain pity parties. I know it all starts with my mindset and I am so blessed to have a husband who cares about me enough to encourage and motivate me. Since I can't seem to fight this for myself then I'll do it for him because he deserves it. I started to pray that God would give him a good woman if I were to "go home" but I'm not anymore. Instead I'm going to pray that I will be a good wife to my husband and that means me getting better.