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.