A Few Quick Things

Hello, again!

I just wanted to take a few minutes and ask for continued prayer in a few specific areas:

• Disability Insurance - We have started the process of the two year review and we are asking that you will pray for them to continue my coverage.  Without that income, there is no way we could afford my treatments, supplements, etc.  
•  The Treatments' Effectiveness - Please be praying that our tweaked plan will make these treatments even more effective this time around and that some positive progress will be gained rapidly and more permanently.  
• Andy - Please continue to pray for him through all of this.  Between working on a farm (which is always stressful anyway) and the added stress of my health - it can be overwhelming at times.  Pray for him to be encouraged and strengthened in his everyday activities.  
• Myself - Please continue to pray for me to find my strength in God and His word and not in other, fleeting things.  Please pray for me to continue to trust His plan and His timing and to stay positive even on the bad days.  Fighting the fear and anxiety when the bad days come has been harder lately and I don't know what I would do if y'all out there weren't praying for me!!

There are so many more things I could list but these are the most important for now and I appreciate your prayers and encouragement so much!!  BTW, do you like my new blog design?  I found this free template online and thought I would give it a try for awhile.  I wish I knew more about the whole blog thing - I'm simply still so new to this.  So, if you have a great site for blogger templates (that are free of course) please share!  :)  Love Much - Jen

Thawing Out

I've been kinda quiet lately and I am just now figuring out why.  It's been a rough couple of weeks (health-wise) and usually that causes me to reflect and process and eventually post something.  This time, I kept finding myself without words or thoughts - as if I was frozen by it all.  Fear or uncertainty can cause people to react differently and for me, this time, it caused a bit of an emotional ice berg.  Without even realizing it, I was trying to shut off the fear and frustration in a way to cope with this latest rough patch. 

It's easy to get lost in the amount of time this has been going on.  It's easy to get lost in the physical symptoms that continuously present themselves.  It's even easier to get lost in the mental and emotional battle it takes to fight all the very real reasons one should feel angry or sad about the situation I am in.  This battle is no easy thing.  And, sometimes, I get tired.  So, this time, I shut off the parts of my brain and heart that long for understanding in all of this. 

Maybe, it's ok to do this once in awhile.  Maybe, it's not.  All I know is that it happened. 

The problem is, when I shut off emotions, it affects how I relate to God.  Even when I was praying, even though I meant every word and still believed in all the things I still believe in, it was like my heart wasn't in it like it usually is.  The one thing that helped me realize this today was the scripture I've clung to more than any other since becoming ill.  I was sitting at the doctor's office waiting for my treatment, feeling pretty darn awful and wanting nothing more than to just be at home in bed, and I started to pray.  My prayer brought no peace (when it usually does) and then these verses came to mind:

Be anxious about nothing.  But in everything, by prayer and supplication with thanksgiving, let your requests be made known to God.  And the peace of God, which passes all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7

I've heard it said that when one doesn't know what to pray, to pray with scripture.  So I did.  And it helped me get that spark lit again and it allowed me to feel hope again, too.  God also supplied the same people to visit with (that I was able to visit with last time as discussed in my last post).  We had a good time visiting and that alone was encouraging. 

So, I look to tomorrow with the hope that it will be better than the last few weeks have been.  And even if I still feel crummy tomorrow, I can hope in the FACT that God is working this for my good and He LOVES me and has not forgotten me or forsaken me.  I NEED Him more than anything else in the entire universe and I'm so thankful He died for my sins so that I could have the opportunity to be called His child.  If you're feeling hopeless about something or just feeling nothing at all, turn to God's word and believe it for what it says - it will help you in more ways that I can even put to words. 

Understanding

Yesterday contained something new for me.  When I was at the doctor's office for my treatment, I had the opportunity to visit with others that are going through similar and yet different medical trials.  To be able to chat (even if it was just for a little while) about things that only they can understand - to have anyone in the same room as me that really get's it - it was such a blessing!  We were able to laugh about our situation while still respecting it and I can't say enough about how good that is for the soul!! 

Both sets of people I had the pleasure to talk to had been going through their trials for much longer than I have and that encouraged me to know that if they can do it, God will help me as long as it takes, too. 

Encouragement comes in many forms, sometimes it's a card or a surprise gift of gluten free lemon shortbread cookies (thank you Nedra - you are awesome!).  Sometimes it's an email to let me know I'm missed (thank you Joanna!).  And sometimes, it's the person, the stranger in the room, who just by being there and sharing what they've been through - it can be just what I needed when I needed it.  Thanking God today for the way He places people in my life and how it shows me just how much He loves me! 

To Move Foward - Follow Up

Yesterday I met with my doctor again to discuss this last month's game plan.  The new approach we had tried had not worked and in fact I had worsening symptoms since stopping the previous treatments.  So we're going to tweak the old game plan and try again. 

It was interesting because he said to me that as much as he didn't like to see me having regressed - the data we collected from something not working was as good as if it had.  It pointed us back towards the direction we should take and helped us identify ways to improve it. 

Isn't life like that?  So many times in life if something isn't working well, we sometimes think that to fix it will require major changes but upon a closer look, small changes are often all that is necessary for a major payout.  Things like coffee.  I can't have caffeine (for almost two years now, caffeine free!) because of my illness so at first I thought there was no point to bother with it.  But I really missed the warm comfort a cup of coffee can give so I resigned myself to decaf and quickly realized the missing caffeine wasn't really missed!  I can still have a cup of coffee and get all the benefits without the nasty side effects of the caffeine.  Not all problems in life are solved that way but more often a simple, moderate approach to change can be more successful than going cold turkey or doing a complete 180. 

Very often, I find myself wishing for a quick fix to my health.  The extremely gradual and slow process of healing and the numerous set-backs make it feel like we've gotten nowhere.  But, for some reason God wants this healing to be slow for now and probably because there's other things in my life that need to heal, too.  He knows that the gradual approach is the only way I will really make real changes - I just pray that whatever lessons He is asking me to learn during this time, that I will really learn them.  I don't want this to be for nothing - it's been too hard and too life-altering that I couldn't stand it if it in the end, it was a waste. 

So, today I try to move forward with hope that going back to the previous treatments will be more successful with the adjustments we made.  And, hoping that I will move forward growing from this situation instead of regressing.  I long to honor this fight I'm in by honoring God and that's why your prayers are so essential - because it's so easy to get stuck in a rut or feeling sorry for myself.  Thanks for reading and for your prayers!!   

Good Grief!

There is a difference between sorrow and despair.  One can be healthy or normal.  The other is losing track of all that matters and having no hope. 


I do my best to remain positive and some days are easier than others.  But, sometimes I find that I have to finally cry it out again - grieve some more - so I can continue staying positive.  My Papa (Grandpa on my Mom's side) always told us to cry so we can feel better.  I always thought that made so much sense because once I do cry, I almost always feel at least a little better.  :) 

Today I find myself grieving a few things.  I miss living life and being "out there".  I miss being involved at church and interacting with people.  I miss having a close girlfriend I can go shopping with or sit and talk over some tea.  I miss worship time at church.  Singing by myself to a cd is worship but I often miss all the other voices that you hear when you're at church.  I miss being able to help someone by encouraging them with a hug or a smile or a compliment.  In many ways, I kind of miss being me. 

It's hard to not feel like somehow I'm losing bits of myself because of all of this.  And yet how I feel is very different from what is actually taking place.  I can tell you that to see myself admit that I miss being "me" is nothing but proof that this journey God has me on is for my benefit.  I spent most of my life wishing I had another physical body and feeling less of a person for it.  I know how silly that is but it doesn't change a lifetime of advertisements, hurtful words, and hurtful actions done to reinforce that line of thinking. 

But, right now, all that seems so silly or will you allow me to say stupid?!  ;)  I'm fighting to get my life back!  Yes, I want what I had because I had it good!!  How stupid I was for even thinking that me being a thinner version of me would have made it so much better!  Sure, being healthy and in shape would have benefits but I fell for the delusion that it would have made all my problems go away.  I was beginning to understand this just before getting ill but right now it's more clear to me than ever.  Yes, one of my first things I plan on doing when I'm able to is to start getting my body back in shape and hopefully losing some weight.  But it won't be for the same reasons as before.  It will be for health but not for a delusion!  :) 

Today's grieving brought me to understand all of this and if I hadn't allowed myself to process today's grief, who knows when I would have realized this important thing about myself.  If you have someone in your life who is chronically ill - help them grieve in a healthy way.  It can help them move on to the next day and sometimes it might even give them some insight into themselves as it did for me today.  But make sure you allow them the option.  They have a right to grieve the things they've lost, the time they've lost, and the activities they miss doing. 

There is always a caution though - despair is not an option!  If you find yourself sad and full of sorrow nearly all the time, please don't be afraid to ask for help.  Sometimes it comes in the form of counselors and sometimes in the form of new friendships.  God longs for you to have a full life in Him, even if you're chronically ill.  You can depend on Him and He will get us through whatever it is that we face.  Cry to Him.  Talk to Him.  Sometimes I even yell a little.  He always hears your cries for help and will get you through if you'll only trust Him. 

So Much More

This week I had one of those days.



I've had many of them in the last two years.  But, each time it happens, it feels like THIS one was the hardest.  I started a new treatment this week and I wasn't prepared for how long it would take.  I was gone from the house for 4 hours.  The treatment itself took 2.5.  I haven't been gone from the house for that long since I got sick. 

I wish I could explain to you how hard that was.  Imagine that that 4 hour trip was a hike straight up a mountain and you have to do it on no sleep.  That might come close to comparing how tough this was.  To so many people, even those closest to me, it's hard for them to know just how hard I have to push myself to do something as simple as sit in a doctor's office (even in a recliner) for 2.5 hours (plus the drive home).  Some days, just a quick drive across town and back can feel like having to go for a run.  Nothing, no task, can ever always be considered "easy" anymore.  Depending on the day, nothing I have to do is easy.  People say things like, "You'll get through it, don't worry." or "It's gonna be ok.", without taking the time to think about what they are saying.  Imagine if you were facing that mountain on no sleep and someone said you, "What are you worried about?  You're going to do just fine."  How would it make you feel and how would you respond to them?  Probably begging for prayer (if you believe in that sort of thing).

I know I ask for prayer a lot but maybe the above analogy can help you understand why.  I NEED it.  Everyday.  And when the extra bad days come, I need even more just to get through.  It's those days when things are more clear than usual.  There is no awesome phone, fun hobby, or even a person who can fix my problems.  Sure, Netflix, digital scrapbooking, and computer games can help me pass time and can be a fleeting gift but they are no real answer.  There is only ONE who gives me hope and gives me a reason to want to keep fighting.  His name is Jesus.  He's real and He's alive and I'm not crazy for acknowledging it.  He is the ONLY real source of peace and strength that gets me through and keeps me from losing it altogether.  He is so much more than anything we can imagine...and He longs to heal, restore, and love us if you'll only let Him.

Now, did I "survive" that 4 hour trip?  Yes.  It was hard though - it wasn't even a 4 hour trip on a good day - I was feeling really awful and made myself go anyway.  If I had known how long it was going to take, I might have backed out and rescheduled.  I can't say I'm glad I went, because I'm not.  I can say I'm thankful that God got me through it.  If I hadn't had Him to pray to and rely on, I am not sure I would have finished the treatment that day.  I can draw strength from God because I know that He would never have me go through all of this if it weren't for something greater.  I can trust His plan, His character, and His love and I know that what happens in my life isn't some cosmic, random, act.  If there was no higher purpose, my suffering wouldn't mean anything and I'd be left to look at empty things like home renovations, cool toys, sports, and the next popular fad for any kind of joy or hope.  So tonight, as I reflect on this week, I have to stop and say how thankful I am that there is SO MUCH MORE to this life than what is tangible and that God loves me enough to forgive me of all my sins so that I can have hope beyond myself and my situation. 

Thank you for your continued prayers - I really can't say enough how much they mean to me!!  If you are facing a mountain of one kind or another, please let me know how I can pray for you and always know that God will be there if you call on Him in truth.  Much Love, Jen

To Move Forward?

Something each major doctor appointment brings is the question of what to do from here.  Discussions of how this or that has or hasn't worked can either bring the doctor to more questions or to new things to try.  There has been a few times, though, where it was obvious to both Andy and myself that even the doctor seemed as discouraged as we were.  See, he wants me to get better, too.  When leaving those kind of appointments, there were always tears of discouragement on the drive home.  Because of this, each major follow up appointment can cause a tiny bit of trepidation.  Will the blood tests give us answers?  Will the doctor give up on me?  Or will I leave this appointment feeling like myself AND the doctor are satisfied with the proposed next steps? 

Thankfully, today's appointment wasn't one followed with tears.  We put a game plan in place for another month and then another follow up. 

I've left appointments feeling like this before, too.  That also causes me pause because you see, even though some slight progress has been made - it's never done as much as we would have liked it to.  I find it's a hard balance to focus on being positive and yet not too hopeful so as not to be so disappointed if/when it doesn't work as well as we would have liked.  Each revised game plan does instill some hope in me and yet even tonight I find myself in a state of caution.  Because hoping in something that ends up not working is almost more frustrating than when we didn't have any answers. 

We put today's game plan in place 4 days shy of 2 years since I last was able to work.  The whole reason I started this blog was to help me process what's happened since then and for my friends and family to possibly better understand what it is that Andy and I are going through.  And yet, how does one move emotionally and/or mentally forward when their physical world is still very much the same?  How do I really let go of what life used to be when I'm still in the middle of this?  Even my dreams are different and constantly aware of my illness.  I often have dreams about the job I used to have or about traveling places or spending afternoons at the mall and in my dream I'll suddenly realize that I can't do any of this because I'm still so sick and that I must get home at once because I forgot all my pills and needles, etc and will need to lay down. 

Andy and I have talked a few times about needing to accept this as our life now.  How waiting for my condition to change or, as if our life is on pause, is not healthy - especially as time lengthens.  Yet, it's still a struggle.  We know that we need to accept this as God's plan for whatever all His reasons may be and even though I know I cannot change what has happened, I still find it difficult to fully let go of what life was.  Another side to this is trying not to focus too much on what I will want to do once/if I get better.  We have some plans and many ideas but if there's one thing my illness has taught me, it's that God will make clear what HIS plans are and in HIS time.  He has me in this place, 'stalled' so-to-speak, for a reason and I need to accept that and stop looking forward and backward so much.  (I'm not saying it's wrong to look forward, one must if they are to have hope.  I'm just saying it shouldn't be all I do while I'm in the here and now.) 

So, I move forward each day, cautious, but doing my best to stay positive all the same.  The bad days make that more difficult but the days that go better or like today, the doctor appointments that go better, help push me and Andy in the right direction.  We don't know where we would be without your prayers, support, and love and we thank you for that.  We ask you to pray today specifically for this next month's game plan.  Please pray it's more successful than anything to date.  And at the very least it will help shine light on what the most effective plan is to move forward with.  And we also ask for you to pray for our ability to let go and move forward in as healthy way as possible.  Thanks for reading and for all your encouraging words and prayers!!  Much love - Jen (& Andy)