Hold on to Hope!

I have a Youversion widget on my phone's home screen and always accidentally open my Bible study plan I have set to it. The plan was about knowing whose we are in JESUS and what we have because of Him. We are God's heirs just like JESUS, so we have and get everything JESUS does.

I felt led by His Spirit to read the whole chapter (Romans 8). It is a very good one to read if you are worried about your economic situation/future with all that is going on. JESUS suffered/died on the cross but He was raised back to life! He is sitting on the throne in Heaven, waiting for us to join Him. That is the HOPE WE MUST HOLD ON TO! Even though JESUS went through all that He did He is still good and we have/receive everything too. So yes, we are suffering (some more than others) BUT God STILL LOVES US! He knows what we need and He is always faithful to provide! 🤗😍💯 

I know now that I need to keep writing! So I need to get my blog back up! I pray that our Heavenly Father will keep on inspiring my writing and that it will give hope to anyone reading! ❤ Please share my blog to your pages to spread hope! 

When the pipes burst

You know when all the little out of control things that alone are passable but as each one starts piling up, it builds this blockage that all of a sudden bursts. Usually it would cause me to explode and damage those around me. Adulting is hard yall! Yet God is showing me that I have to start being more decisive in my actions and thought processes. When something runs the same pattern over and over, it wears out its surroundings. It chisels and makes almost permanent stuff that most likely really shouldn't be. I see now that renewing your mind and seeking to have the mindset of JESUS is the only way that has worked best so far. I have tried my way, which was really the world's way because I was trying so hard just to fit  somewhere in it. When I did that, utter chaos and pipes bursting errwhere! I just felt like I could never function properly with other people and I cared so much more than I acted like I did about it. The selfish things I would do would consequently cause the most pain. Looking back, my self hate has tried so many times to consume me. Then I suspect it manifested into a strange illness that has plagued me for long enough. I lost so much but learned plenty. Now I force myself to stop and remember all that I lost so that I can be content with all that I have. So when the Jeep ac dies, the drama is dramatic, the house is showing our lack of love and commitment, I remember I had more when I thought I had lost. I am blessed with a man with a heart for JESUS, a wonderful home and the strength to still make the most out of the situation we're in.

The LORD is my Shepherd I lack nothing.
JEHOVA JIREH

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Deliverance from Fentanyl

It's been a while since I've posted anything here. A lot has happened and sometimes I get discouraged too easily. I also tend to procrastinate, especially when it comes to writing. I don't know why maybe it's fear or that negative voice that tells me that "no one is gonna read this or even care so what's the point?". Yet I must press on and keep typing! Especially since I have something to celebrate!

In the summer of 2016 at the apex of my flare up, I was in an excruciating amount of pain. With Scleroderma and RA, every joint in your entire body locks up. It hurts to move even a millimeter. Like I have said before I wouldn't wish this pain on my worst enemy. Conventional pain meds were not enough anymore and I refused to take meds that would mess with my brain chemistry so my doctor suggested I try the Fentanyl patches.

I was so out of it at the time and delirious from the pain that I started applying these patches to my skin without really researching about it. We were desperate to get me some sort of relief and as dangerous as this drug is, I must say that it did help. The dose I was started with was 100mcg. I remember when we told my pulmonologist (lung doc), he was shocked because of how small I was.

The side effects were no joke. Your body goes crazy if you don’t have the patch on consistently. One time I went just one day without it because it is a controlled substance which makes getting the prescription filled a hassle. I thought I was going crazier than usual! I got hot flashes, chills, shakes, anxiety oh my! It was I would say just as bad as the flare up pain but on a mental/emotional level. I read that the reason for such high security when it comes to getting this medication was that it is being badly abused. Some folks were even sucking on the patches just to get the high. Yes, it did feel good for a moment after applying the patch to be mostly pain free but the way my body reacted when I missed just one day was too scary. I knew I had to wean off of this drug asap!

After receiving my first round of Rituxan injections, the inflammation subsided a bit and I was able to lower the Prednisone dose (which is another one I’m hoping to be rid of soon!) and the Fentanyl. I was on Fentanyl for a little over a year, going from 100mcg to 75 to 25 then to 12 as of a few months ago. I decided to change doctors last year (which will probably be another blog post in itself) and I asked to be put in a pain management clinic. That really helped me to wean down although they prescribed me hydrocodone along with the 12mcg of Fentanyl. A funny thing happened though. The only way to get my prescription, I have to visit the pain management clinic and the doc has to write it out then and there. So if I run out, I have to wait until my next visit. After the second visit, I started to run out before my next appointment. Instead of changing the patches every two days, I would wait and change every three if I could. Then on this last visit which was last week, the doctor realized she wasn’t prescribing me enough patches!  I’m sure anyone else would have been upset but we (my hubby and I) were laughing because we knew this was God’s way of working things out like He always does! So I told the doc that I had been without the patch for almost a week. She was surprised and said that the worst part should have been over by now. We were elated! That’s what we were hoping for. So I told her not to bother writing another prescription for Fentanyl.

I don’t know how difficult it is to come off of this drug but by the grace of God I did it! Sometimes I feel a little weird occasionally but it’s nowhere near what I felt on the stronger doses. I’m putting my trust in my Heavenly Father that I am finally free from it. This is a small victory but a big glimpse into many more to come in the future. Well I better get to sleep, I have round 2 of 2 of Rituxan in the morning!

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