Acthar, Remicade, Orencia..... oh my.....

First of all, thank you to everyone who asked to be added to my update list.  This is how my blog updates will come to you from now on!  I appreciate you taking the time to read my blog, and I thank for your support and your prayers. :)

The last few weeks I've been doing a lot of research on certain medications that my doctor has mentioned as possibilities, and also tried to see if I could find any information on anything new out there.  I emailed my doctor this week with all my questions and concerns about each option, and so now it is just a waiting game to see what my doctor thinks regarding the next move.  I have felt better just having the email completed, now it is just a waiting game.  There are times she gets back to me quickly, other times it takes awhile for her to complete research on her end of things, so I have no idea how long it will be before I hear from her.

I am praying for a very clear peace about the next step.  Every time I feel like maybe is the right next step, then I'll have doubts about it.  I feel very uncertain, and not at complete peace about anything at this point.  Everything is experimental.  All the "tried and true" methods have failed for me.  So everything is somewhat a shot in the dark, with very little proof on whether or not the treatments are even going to be helpful.  Information on each possibility is very scarce.  Each study only has a few people in them.  When you have a rare disease, there are not that many people to practice on!  However, each possibility is being tried out there for a reason, which means it is thought to have the potential to help, possibly help more than anything I've tried thus far.  That is what I am hoping for!

It can be very overwhelming when researching the medications.  I often wish that when reading about medications, that they would have GOOD side effects.  You know, something like:

This drug may have the ability to make you ridiculously good looking.

This drug may give you superpowers, like the ability to fly.

This drug may raise your IQ instantly!

Instead, these are some of the warnings on the drugs I've been researching and warnings on the drugs I've taken through the years:

This drug may cause a lupus-like syndrome.

This drug may cause bone loss.

This drug has the potential to cause certain cancers.

This drug has been linked to a fatal brain disease.

This drug may cause death.

It's pretty scary to read stuff like that.  I know that I've been on a many medications that were potentially very bad, and yet while the best hasn't happened, the worst has yet to happen.  I'm very thankful for that.  More so, as my mom keeps reminding me, God is in control regardless.  And she is right.

I also know that some sort of action has to be taken, as I don't want the illness to be out of control.  I have had some very, very difficult times with this illness, yet I have not seen the absolute worst of it yet.  It's been very bad and very serious at times, yet I know others that are or have been in much worse shape than me.  It's not a pretty illness by no means, so if something can be done to help stop it, I need to try it.

That said, it doesn't keep me from feeling a bit scared and tentative about it.  I've had so many roadblocks and setbacks throughout the course of this illness that I'm not sure how I'll emotionally handle another disappointment. So I am really praying that the next course of action will bring some relief.

Another prayer request for all my prayer warriors out there:  because all these medications are experimental, it means that it may be a fight with the insurance company.  We had to fight for a treatment for almost 8 weeks once.  Please pray that whatever option is chosen, whatever option is best, that the doors will open in this area as well, that things will be settled quickly, as I do not want to wait too long.  I tolerate things better when I am stronger, and too long of wait could cause me to be too weak to tolerate anything well.  We are also concerned about the financial side of things, as some of the options are well into the thousands and we are not sure how that will all work out.  For instance, one potential option that would only be for 12 weeks is a total cost of $36,000!  So those are definite areas of concern, and I appreciate your prayers in those too!

I need to sign off for now.  I hope that this update makes since as mom & dad are cooking dinner and it is kind of noisy out here in the great room.  It's not that they are really that loud, it is just that my mind doesn't handle any kind of distraction too well these days!  Fatigue will mess with your concentration, that is for sure!

Thanks to the "Jesus is Love" facebook group for the photo above.

"The hope that belongs to our calling should be a dynamic force in our lives, encouraging us to be pure (1 John 2:28-3:3), obedient (Hebrews 13:17), and faithful (Luke 12:42-48). The fact that we shall one day see Christ and be like him should motivate us to live like Christ today."-W. Wiersbe

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God and Suffering

Right now I'm currently reading "When God Weeps.... Why Our Sufferings Matter to the Almighty" by Joni Eareckson Tada and Steve Estes.  It's a good book, I highly recommend it, but I will warn you, it is intense.  It's not light reading or happy sappy stuff.  It's good though, and grounded on scripture.

Considering my health, it's probably not a surprise to most people that I've studied suffering in Christ more than once in my lifetime.  It's an ongoing study for me, actually.  There are some areas that I feel I've grown a lot and learned a lot regarding suffering; then there are mysteries of God that are still so far beyond me that I cannot comprehend.  After all, as a human I have a finite mind that cannot even begin to fully understand the mind of an infinite, all knowing God.  That said, I am thankful for the lessons I've learned through my suffering and want to take a minute to share some of them with those reading today.

There have been so many times in my life I've almost feared talking about my illness just because so often it usually turns into some sort of judgement about my faith or my character. 

"By His wounds we are healed so you must be doing something wrong."  

"Your still sick because you've never asked for healing."

"Well you are still sick because you don't have enough faith." 

First of all, I have a hard time understanding how people feel that this is helpful.  Let me tell you, it's not.  It makes the burden that much heavier and the loneliness that much more apparent.  And beyond that, it is judgmental and we know we are not suppose to be judging our brother.  But that's another sermon for another day, so I continue back to suffering..... 

Secondly, these comments are unbiblical.  If you believe the Bible to be the infallible Word of God then you have to believe all the events to be true.  If you believe all the events to be true, then how can you dismiss the Godly men and women throughout the Bible that endured suffering?  Joseph was thrown into a pit by his own brothers.  Almost the entire book of Job is a detailed account of Job's suffering.  Timothy was often mentioned as sick.  Paul had a "thorn in his side" God chose not to remove.  There are many, many more examples.  In fact, I can't think of one example in which is said "and so and so was a servant of God and therefore lived an easy, no trial life, and was happy every single day."  So where is this coming from?

Do we really think we are better than the people who made The Book?  That we can somehow avoid suffering when these people did not?  

More so, if Christ suffered to fulfill His purpose, and we are suppose to be like him, are we not going to suffer in this world?  And isn't in suffering that we are made more like Christ? Are we not called to share in His suffering?  Does our suffering not build character? Doesn't God often reveal Christ in us through suffering? 

⁸ We are hard pressed on every side, but not crushed; perplexed, but not in despair; ⁹ persecuted, but not abandoned; struck down, but not destroyed. ¹⁰ We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.- 2 Corinthians 4:8-10

¹² Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. ¹³ But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. -1 Peter 4:12-13

² Consider it pure joy, my brothers and sisters,^[a] whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything.-James 1:2-4

The verses above are not the only examples of verses pertaining to suffering, but they are good ones.  Powerful ones.  

A few years ago, I started to do a lot of soul searching after hearing comments like the one I mentioned above.  I prayed that God would reveal to me if I had anything to do with not being healed.  I pleaded and pleaded that this illness would be removed me from me.  

I truly believe that God can remove my suffering if He so wills it.  But to this point, the answer has been "no" or at least "wait." That is often the hardest thing to accept.  That He can, but He hasn't.  

I don't know if I'll ever fully understand why I've had to endure twenty years of long, intense, day in and day out suffering.  I struggle with the fact that I feel I could be more purposeful if I had a body that worked well enough that I could do all the things I'd like to do for other people.  I sometimes feel friends and family get the short end of the stick, not because I don't care and love them dearly, but because I'm running on fumes.  I blank out sometimes when people are talking to me, people I genuinely love talking to, because the fatigue is so overwhelming.  I have to plan around my illness and my illness keeps me bed ridden a lot.  I can't plug into church or ministry the way I use to.  And I wonder, how is God getting the glory here?  How can this be right? 

I don't know.  

But I know that without this illness, I wouldn't have half the compassion I have for others. 
When I hear of someone suffering, my heart wouldn't break for them the way it does.  I wouldn't understand they power of a listening ear and a good friend.  I would most likely get busy with "real life" and I wouldn't have so much time to ponder Spiritual things. 
I am more appreciative for the things I do have.  Little abilities most take for granted I consider something to be thankful for.  God blessed me with a wonderful, patient mom.  A father that has provided for me.  A sister who loves me and sends me pictures of my niece on bad days.  Extended family that supports me.  Cats that make me laugh when I just feel like crying.  While I've had some friends disappointment, it makes me more appreciative of the ones who stick by me.  A home that is accessible.  So many blessings it would take me days to list them all.  

The greatest gift of all: My faith is stronger not in spite of my struggles but because of them.

I know God is far more concerned with my Spiritual welfare than my physical one.  And isn't that the way it should be?  Shouldn't the eternal life mean more than the life that will pass away? 

God has, and continues to use this awful thing to somehow make me better, build my character, become less so He can become more. 

And there is a powerful beauty in that. 

I was looking at my facebook page and found a note I wrote about three years ago.  I want to share something I wrote:

God has taught me so much during the course of my illness. I do not believe that it is an accident or a coincidence. I feel God is using this time to grow me for a purpose I do not know yet. I’d like to share a little of what I’ve learned through this time, and to begin I’d like to quote 2 Corinthians 12:8-10:

“Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

One of the hardest lessons I’ve had to learn is that God’s healing may not come on my timetable. In fact, if it is His will, He could choose to never heal me at all. I’ve learned it isn’t my job to always understand the how’s and why’s of my suffering; but it is my job to accept it and trust in Him regardless of my circumstances. So many people throughout my life have tried to convince me that it is never God’s will to allow suffering; and if one is suffering it must be due to a sin in their life or a lack of faith. It is verses like 2 Corinthians 12:8-10, however, that I feel rebuke such theories. I believe God allows times of suffering to grow us, refine us, and strengthen us. If we were always strong, we would never have to rely on His strength to perfect us. Furthermore, if Christ is our example, and Christ had to suffer for God’s will to be fulfilled, who are we to expect to be exempt from suffering? Over the years my priority in my prayers have changed. Though I still pray for healing of my physical body, my priority is that I’ll be in the midst of God’s will no matter how hard that may be. I’ve learned that if His will involves suffering, His grace is sufficient. 

And my prayer is, and has been since that point that if God would will my healing, He would do so.

And if not, that He'd give me the grace to endure it. 

Please pray for me.....

Right now, I am still in the midst of researching my treatment options.  At this point, everything has risks and everything is experimental.  It's very hard to tell which way to go.  I really don't have a peace about any of the options yet.  I also don't have a peace about not doing anything.  Though I've made improvements and I am no longer at my "worst", I'm still a long way from being well.  I may have made it a few steps up the mountain, but there is still way more mountain to climb.  The misery I feel on a daily basis is still overwhelming and crushing at times.  I'm scared of a relapse as well.  

So please pray that:

God will give me a peace about which treatment option is best for me. 

God will give my doctor wisdom to know which treatment is the best for me. 

God will continue to grant me grace and strength during this fight. 

Thanks for taking your time to read my blog.

Our Hope Endures,

Stephanie

Medication is My Frenemy

Once again, I feel like I've hit a roadblock with my treatment.  I'd be lying if I said I didn't feel defeated right now.

In case you are reading this and don't know the backstory, about a month ago now, I found out that the tacrolimus side effects were becoming too strong.  I went off for a few days and started having skin and stomach issues, so I then resumed a lower dose to see if things would even out, to see if I could get the benefits without the overwhelming side effects.  At first I was handling it ok.  Then in the last few days, the weakness side effect started becoming overwhelming again.  My legs started to feel shaky and I felt faint and dizzy all the time.  I started struggling with the abilities I had just discovered I could do again.

The reason I say "medication is my frenemy" is simple.  When I look back at how I was doing at this time last year, I was in pretty pitiful shape.  I had to have help for just about everything, and my mom said I felt pretty much like dead weight when she'd help me out of chairs and stuff.  I had a lung function test and found my lungs were weaker than normal, and I wasn't even surprised since I felt short of breath all the time.  My heart was racing quite often and my chest hurt, and the echocardigram showed inflammation of my heart.  I could tell this was not just affecting my muscle strength anymore, but my organs.  I felt terrible and pretty much helpless.

Now, after a year of tacrolimus, I have regained some strength back.  (Strength I didn't realize I had gained back until I was off the medication.)  I still have so many abilities I can't do and I am still working on, but I'm actually doing some things I couldn't do a year ago.  Even something as simple as opening the refrigerator door is a big deal for me right now!  My lungs feel a good bit stronger and it's been a long time since I had a heart racing episode.  So it has done a lot of good.

The problem lies that while I'm on the medication, I can't feel the good it's doing.  The fatigue and weakness become so overwhelming I don't even feel like myself.  The problem is, without it I could lose the progress I have made, and I definitely do not want to return to the place I was a year ago.

Without the medication, things could get dangerous again.  With it, I'm exhausted and feel like I'm losing my mind.  Both my friend and my enemy.  Ugh.

So here I am, dealing with my frenemy.  My weakness from the disease is better; but the weakness from the medication is just counteracting that.  I really had no idea I had gained strength back until I was off the medication.  Then I started to do things I couldn't do previously.  More so, I felt like me again.

So here I am again, not sure which direction to turn from here.  I am praying for peace and strength and wisdom right now.