Paths taken and yet to take

I meant to post part  this last week but procrastination and fatigue got the best of me as usual. Please forgive that it's all over the place...

Now that I am starting to be a lot more functional it has put me back into this rock and hard place that I constantly struggle with. As soon as I start to feel myself I start going a mile a minute. I want to do everything I couldn't before when I was laid out. I remember laying in bed for days and days getting all sorts of ideas and dreams that almost seemed to diminish just as quickly because of my brain fog or the hopelessness of my condition at that moment. I try now to remember and sometimes I get lucky but even still I continue to get new ideas and dreams. I tend to jump into as much activity as possible and I see now it is the fear of not being able to complete a project or do much of anything because my energy levels are still constantly fluctuating daily. Its a bit of a crap shoot every morning. Since I have been doing physical/occupational therapy, I feel like I'm getting stronger but I still pay for it dearly. Still I know it will all be worth it! My current struggle though is the constant fatigue and soreness, that and of course doing too much! I want to be an asset to society, I want to do meaningful things with my life! I'm so sick of being helpless and reliant on others for simple tasks. I miss the freedom of being able to do whatever I want without fear of pain or weakness to follow each and every time. Having to pick and choose which activities to get into has been tough. I hate to disappoint my loved ones when I can't make it to different functions and I especially hate missing out on fellowship with my friends! Nonetheless I am truly grateful for this renewed strength and hope! What I am learning now is to remember my identity in Christ! Yes I had to drop out of school and I can't work a regular job like everyone else but that doesn't make me less of a person. God thinks I'm special and I know He has nothing but good planned for me! My true and real fear is that I forget what He has already done for me and I fall back into my old ways of trying to strive for my own greatness or glory! All I want to do now is just live for Him and bring Him glory with all that I do. I felt like I have wasted so much time focusing on the wrong pursuits but I know my Father will restore all that I have squandered and then some! Just being able to spend so much alone time with Him now has been the biggest blessing that has come out of all that I have endured. I pray that I never take this sweetest  most precious time in my life for granted ever again!

Yesterday my amazingly sweet husband took me to a nice lunch at our favorite Castroville Cafe. Then we went to Castroville park for a quick hike up on Cross Hill Trail. It was very tough but I prayed the whole way up. I even forgot my portable oxygen and almost ran out of water! Yet I sucked it up and kept hiking. It was so worth it just to see that view and spend quality time with my husband! We have been through so much together and today marks 7 years of marriage/14 years together. My husband has been my biggest supporter through this journey through hell called Scleroderma. I really don't deserve this man. He does so much for me and asks for nothing in return. For him especially will I keep going. I just feel terrible that I tend to take my frustrations out on him but he loves me anyway. He keeps me from falling into my self pity parties. He doesn't let me over work myself and at times I tend to resent him for it. He almost didn't let me make that climb but I insisted of course. I wanted to prove to him and myself that I could do it. I knew I would be taking a chance by doing this. Risking many days laid up and "paying for it". I refused to give into the fear of uncertainty. I have to keep pressing forward. After looking at the pics we took I see a parallel of this spur of the moment climb and our journey in this life together. There has been times we want to both give up but God has given us all we need to make it through. He has shown me so much love and encouragement through my husband. I even feel the disappointment when I start to lose my grip and want to quit, Wherever our path leads us it will definitely be worth all the pain, heartache, and frustrations. Its going to be so worth it at the end!


Sitting outside today during my quiet time reflecting on everything that happened this weekend has revealed so much. My Father has strengthened my marriage, shown me His love through my husband and reminded me of old promises long forgotten. This being my wedding anniversary makes it more clear to me how much He loves me. All those times in my pain and fear when I wanted to quit and "go home", He was always here. He has never left me. He won't give up on me. I don't have to go anywhere because His Presence is Heaven to me. If I keep remembering that I will never leave Him for anything else, I would never want to.

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.

Day 8 - Scleroderma Awareness - Pain

Well at least I'm not 2 days late this time. This past week, well the past few weeks have been rough. I was starting to do a little better but lately I feel like I'm almost as bad as last summer's flare up. The pain has been hard to manage. I try to avoid taking the pain meds but I think the pain is part of what wears me out. Its like I have to create my good days with numbing the pain but then I feel everything when they wear off. I’m trying my best to listen to my body, to learn what causes my flare ups and GERDS attacks. A lot of what I’m dealing with is based off of the choices I make along with the unpredictable attacks from this disease. Sometimes I just lay in bed and try to shut out everything and I feel like my body is screaming at me. Sometimes I want to scream at my body but instead I just lay there and cry in frustration. I thought I had worked through all of this before but I’m back at square one again. I need to really start loving myself even though I have betrayed my body with the terrible choices of the past and my body has betrayed me by keeping me from so much! The pain and the fatigue have been trying to keep me a prisoner but I have already been set free! I need to remember that!

            I was going to stop drawing these pictures because I feel like it makes me dwell on this disease too much but after reading a comment on a Scleroderma FB post I’m going to keep drawing them. From far away it’s hard to see the reality of what Scleroderma does to people. Its not as obvious depending on treatment and situations, still the internal struggle definitely is real! The torment our bodies go through are sometimes hard to describe. Everyday life can be very complicated and high maintenance. So when the question gets asked “how are you doing?” the answer is either fake or awkwardly honest. I thought being elusive and hiding away would make things easier but loneliness is a bitter friend. I still don’t share everything about what Scleroderma does to me on a daily but at least for now, I can express it (or release it!) through my art and this blog. If anyone wants to know more feel free to ask but I’d rather tell you how much JESUS pulls me through every single struggle every single time! 

Day 6&7 - Scleroderma Awareness - Paying for the good days

I see this is gonna be a thing with these late posts. Better late than never I guess but that's what life is like with Scleroderma. Whenever I start to get my strength back, I try to fit in as much as I can into the day. I don't mean to but it's hard to stop when I get to do more than just lay in bed all day. It stinks that doing little things like walking to the bathroom or taking my fur babies outside to hangout or even just painting/drawing wears me out so much. I really wanted to write earlier today but I was just so drained and groggy. I slept most of the day and had barely enough energy to eat. Now at almost 1 a.m. I finally have just enough to get through this post. I'm trying my best to not think about this upcoming weekend. So many plans are getting
cancelled and now I feel like I'm losing my good days. Still I have to stay positive somehow. I just feel so numb sometimes, maybe its the meds or the pain or that I don't feel like myself at all anymore. For now all I can do is keep trusting God and be grateful for the good days even if they are few and for between.

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.