Friday, July 19, 2013

A Wish List of Sorts

Over the past three years, there are a few things I have dreamed of that I often think would make this journey I'm on just a bit easier.  Sometimes I find myself feeling guilty because unlike many sick people in this world, I live in the lap of luxury comparatively.  But, I also find myself dreaming, as it were, of things invented and yet to be invented, that would make the last three years so much more bearable. 

#1.  It's days like today I DREAM of the "Beam me up, Scottie!" transporter that is so often seen in Star Trek.  If I could just transport myself to ND for the afternoon so I could visit my family and then return home as soon as I'm not feeling well, that would make life so much better!!  But not just ND, if it could transport me to a friend's house nearby, and quickly return me home once worn out, I might actually get to see people once in awhile.  But, alas, there is no transporter and probably never will be - but I will keep dreaming of one.  :)

#2.  It's also days like today I long for a back deck, with wonderful, comfy outdoor furniture and dog fence around it so the girls could safely join me.  I would LOVE to be able to watch the sunset outside w/out the dirty windows getting in the way.  It would allow me more fresh air on the bad days when even the energy to go downstairs and outside just seems to not be there.  To be able to read or do devotions outside and while one w/ nature is always better, at least for me. 

#3.  A hot tub or jacuzzi tub.  I've had many a day and night spent in pain that no advil can touch and to have the luxury of hot bubbles soothing my achy bones and muscles would be so wonderful!  Oh, I forgot to mention, I want one w/out all of the maintenance that goes w/ one, too! 

#4.  A magic wand or a jeanie in the bottle, or just a nose that wiggles would do.  To be able to clean my house w/ one flick of the wand or one wish or nose wiggle, would be so grand!!  Same goes for cooking!!  :) 

#5.  For one with a chronic fatigue problem, I often dream of the days doctors made house calls.  You can not know the terror the waiting room can be until you're so very sick and so very tired that waiting that 1.5 hours now takes every. ounce. of. strength. you never knew you had.  To be honest, I didn't know how I got through it - I honestly believe it was only by the grace of God I did.  Sitting at home on your couch is NEVER equal to sitting in a waiting room or in one of the patient rooms in a horribly hard and opposite of comfortable chair.  Never. 

#6.  I wish our little town of Sunnyside, WA had a grocery store that delivered.  I'm so thankful to have found some friends who help us out by doing this for us now but it would have saved us a lot of trouble to begin with if this service was offered here like it is in other places. 

#7.  An evening church service on Sunday's.  Now, there will have been (and continue to be) times that I still wouldn't be able to make an evening service but there would also have been times I could have gone to church if there had been an evening service to go to.  I miss church more than just about anything else and even though I know an evening service just isn't possible for a small church like ours, I still wish it were. 

#8.  Last, but not least, I wish that this had never happened to begin with.  I dream of the days I was well and busy and going places.  Andy and I were always visiting with friends, family, or going to the movies, etc.  I have new dreams, too.  I dream of one day actually being good at photography and setting up a studio downstairs along w/ different cool props out back.  I dream of having children and all the energy required to raise them, to love them, to teach them, to sing to them, to make them laugh, to watch them w/ Andy and watch Andy be their father.  I wish to be able to help out at church again.  Whether it be w/ teaching children, running projection, or helping out some other way, I just want to be useful and contribute to this life.  Right now, I feel often like a taker.  Everyone else must give to me as I can give so little - not by choice - but because of my circumstances. 

In the end, I want you to know that I do recognize how truly blessed I am!  We have a roof over our heads, food to eat, and two furbabies that we love dearly.  God has provided many graces to us throughout this illness and I thank Him for it!!  It's just, until you're in a situation like mine, you don't understand the obstacles someone else could be facing.  If you know someone who is ill or disabled, there might be a single task you could do for them that they struggle to do themselves.  Just having one less thing to worry about can make all the difference in their day/week/month! 

I know it's been awhile since I've written.  I wish I could just make a machine that would allow you to instantly know all that I am going through without having to explain it.  I guess that's #9!!  LOL  There are times, like the past few months, that I'm so afraid of saying the wrong thing or worrying what you'll think if I'm truly honest w/ how things are.  Will you believe me or will you, like many others, label me crazy and walk away?  To those that have stuck by me and encouraged me throughout this, you are blessings beyond blessings to me!!!  Thanks for reading!  :)

Saturday, April 27, 2013

Something Wonderful

Ok, so today I received a package in the mail of a dvd made by some of my friends and family to encourage Andy and I.  I bawled, I laughed, and cried some more but it seriously was one of the coolest things anyone has done for us!!  I can't wait to show it to Andy tonight when he gets home from work as I know he'll enjoy it, too!  :)

To all of you who were a part of the video whether your messages were to make me laugh or encourage me, I can't say thank you enough!  There is no amount of money or earthly treasure that can replace the love of friends and family.  Y'all are wonderful and it was so neat to see some faces that I haven't been able to see in awhile. 

Thanks for the awesome encouragement - I can only pray I've been an encouragement to you at some point or another! 

Love much!!!

Jen  :)

Tuesday, April 16, 2013


One of the hardest things about having a chronic illness is that there is TOO MUCH INFORMATION.  Books, commercials, infomercials, videos, internet websites, etc all have something to say about every medical problem that has ever existed.  Some claim to be a cure-all while others boast improved everything.  Some actually have good information but how does one sift through it all?

It's a daunting task for any normal person to try to make sense of it all, let alone someone who struggles with pain, fatigue, and concentration.  It's also frustrating because in so many areas of life, the more you learn, research, absorb - the better prepared you can be to make good decisions about whatever it is you are focused on at the time.  But in the area of chronic illness, there are so many conflicting opinions about what is the 'best' way to heal this or that, that it can make one want to scream.

I'm the kind of person that if there is anything I can be doing to improve my odds, I will do it.  I want to be sure I'm doing everything I'm physically capable of to ensure my best chances of healing.  So, when there are so many different ideas about what it is that I should try, it's hard to not feel like I'm not doing enough.  And even though I do struggle with feeling this way, I know it couldn't be further from the truth.  I get up every day and read daily emails with information on my illness and treatment guidelines.  I have a pill box for AM/PM drugs, vitamins, and supplements I must take each day and it's something I never skip.  I spend every minute I'm awake (and often even when I'm dreaming) aware of my illness, of how I feel.  I keep a daily symptom journal and most importantly, I have a doctor I trust that works with me.  He listens to my problems and doesn't dismiss my thoughts or ideas about my situation.  In many ways, he's become my filter for the information I do read and think might have merit.  I am able to bounce stuff off of him and see what his opinion is and he usually has websites, medical papers, or personal experience to back up what that opinion is.  No doctor is perfect but I'm thankful that, for now, I have a doctor that treats me like I'm a real person. 

Another great help has been my sister.  She's much more into biology than I ever will be and when I'm too tired to think or concentrate on something, I will usually ask her to research something and give me her opinion.  Have someone like that I can go to is another blessing amidst all of this.

So, if you know someone who struggles with a chronic illness and hear them say they are feeling overwhelmed or confused about their situation, and you are able to help them by doing some research for them or helping them find a new doctor that will work with them - you could be such a blessing to them!  They may not always have the energy or the wits to show just how thankful they are but trust me, they will appreciate you helping bear that load.

Monday, April 8, 2013

Something Different

First of all, I just want to take the opportunity to thank you for your continued prayers!  The protocol I'm on is so far going as planned but that does mean things have been extra yucky and painful.  I have had a shot or two of some hours when things were "good" (relatively speaking) so, so far, this means I'm hopefully now on my correct dose and progressing (very slowly).  Going through this is NOT for the faint of heart.  It's taking all of my ability to trust that God will get me through this.  He's the only reason I haven't lost my mind and He's the only thing keeping me going.  The last three years is the hardest thing I've ever gone through and I cannot say enough how thankful I am for everyone's prayers!!  :)

But today, I want to post about something different.  Many of you know that when I'm feeling up to it, I try to spend some time doing something creative that I enjoy.  That something is digital scrapbooking.  I also enjoy photography.  I'm no professional but I long to take good quality photos and have spent the past few months practicing on my furbabies.  :)  I have discovered, though, that there are two things that can make or break photos.  #1 - having a good lens (something other than a kit lens) for your DSLR is a must.  I spent $100 on a lens and it's the best $100 I've invested in my camera.  #2 - having a decent flash.  The pop-up flash is just not good and when using it for indoor pics you'll not be able to avoid the harsh dark shadows that make it look so unnatural.  Good photos are all about good lighting and so for my b'day this year, I asked for a mid line canon speed light and I am so glad I got it!  I've been able to take much better pics of my babies inside and have light that looks natural instead of harsh. 

Anyway, this past month, I decided to finally combine the two and I finally made my first digital scrapbooking/photo book.  I've had a lot of yucky days in the past month but when I actually felt I could concentrate for a bit and sit up for awhile, I've been working on this project on my computer.  It's finally done and I can't wait til it gets here but in the mean time, here's a few previews of the book I made.  Also note that I used the digital scrapbooking kit called "Because" by Paislee Press to make the pages you see below. 

Front Cover
I also made a few different layouts(LO) that I reused throughout the book.  Here's a few previews:

1 Photo LO

Wording LO for separating sections of different pictures.

4 pictures grid style LO
2 Photo LO

A favorite of mine!
back cover
So, as you can see, I kept things very simple.  I really wanted the photos to do the talking and keep the digital design more minimalist.  Once it comes in the mail, I may just have to show you a few photos of the finished product!  :) 

Thanks, again, for reading and I hope that as each month passes, things will start to improve.  I thank you so much for your continued prayers and encouragement!  We need it!! 

Sunday, March 3, 2013

An Update and Some Thoughts

First, a quick update:

1-The in office doctor's visit issue has been sort of resolved.  My family doctor here in town is willing to see me to help fill out the paperwork for my disability.  Not having to travel to Yakima is a huge answer to prayer but even this appointment could wear me out quite a bit so I'm praying that I will have a better than usual day that day and that I will feel ok.

2-The other item that will be taking place in Yakima, there is a possibility of conferencing via the phone.  Please be praying that this will be approved as I know my limits and a trip to Yakima for this would not be physically possible right now.

Thanks for your continued prayers around these items - I appreciate it so much!!  :)

 One of the most draining aspects of chronic illness is the battle against fear and discouragement.  Today was no exception.  Whenever I have a day that the fatigue and wooziness are extra bad, I fight the urge to be scared and worry I'll never get better.  Or worse, that I will actually regress.  So far, the new protocol I'm trying is doing everything as it says it will.  I'm feeling quite yucky most of the time with short spurts of hope (like 10-30 min) about once a week or so.  It's a process that takes months of dedication and time to allow the process what it needs to help your body get ahead of the problem.  But in the meantime, when the bad spells kick in (and trust me, they've been pretty horrible,) it's so hard to not doubt and worry that I'm not actually getting better, that I'm only regressing and not actually helping my body.  

Another thing I've come to love/hate is the internet.  Without it, I would never have crossed paths with the person who turned me onto what I'm trying now and what I believe is finally (HOPE TO GOD) the answer.  But the answer has so many different theories as to what causes it, so many different people claiming they got better by doing this or that, it can make one feel as though you're in a mall in a foreign country and you just want to find a certain shop but all of the shops offer the same things and the same promises and you don't have a clue what's the best or worst.  This makes me wonder and start to worry that what if I'm wasting my time on this protocol?  What if all this suffering I'm enduring is for nothing?  Truly, I don't think it is but it's hard, after years of failed treatments and unsolid diagnosis, to not be anxious that this is history repeating itself again. 

So, I lay myself before God, again, asking for His peace.  Any human amount or attempt at peace never works and I know my portion must come from Him because I'm so worn down.  It is God alone that gets me through each day and keeps me from losing my mind.  He also uses those of you around me to help encourage and love me and for that I can never repay you.  In some ways, I think I'm finally facing the reality of my illness, now that I'm pretty sure I can give it a name (or two).  So, if you know someone who is chronically ill, send up a prayer for them to be encouraged and whether it's a hug or a quick text, anything could be just the thing they needed that day to help get them through.  I'm so thankful for my encouragement warriors, especially on days like today.  Again, thanks for the prayers and please keep praying for the two appointments mentioned above! 

Much Love - Jen  :)

Saturday, February 23, 2013

Prayer Request

I know I've been pretty quiet on here but so far, the new treatment is doing exactly what it's supposed to - you get worse before you get better.  It's been tough the past month and this phase is not something that passes quickly. 

This also presents an issue for the month of March.

I have two appointments scheduled for March that are "have" to be there ones.  For those of that have been keeping in touch, you will know that I've only been out of the house two times since late November.  (I've been outside but not away from the house except for twice.)  Of those two times, both were short 20 min car rides and nothing more.

As you can see, a LOT has to change between now and mid March if I'm going to be able to physically handle what's to come.  The first appt, there is a chance that I arrange a video conference instead of having to go to Yakima.  Please be in prayer that this would be an option and that they will allow this or that I would start having some much better days very quickly.

The second appt is a required in person doctor visit for my disability insurance.  I've been having phone appointments about every 6-8 weeks w/ my doctor but I've been unable to handle the trip to Yakima since mid summer.

On a day like today when I am so ill, it's extremely stressful to think about just getting ready to go to an appt, let alone drive there, sit and wait, talk to the doctor, and drive back.

So, I'm asking for big time prayer.  Prayer that I will start having more frequent good days and that God would work out all of the details surrounding all of this as it's very hard for me to not worry as I know my physical limits and I just don't know how this is all going to come together.

Thanks so much for your prayers - I need them immensely.

Friday, January 11, 2013

Once Again

Well, here I am, once again, in a familiar place. 

It's happened before, a few times.  Times when we thought ok, we've now found the answer and have moved forward with a new game plan.  Only to be disappointed by the lack of progress when so many others had found this or that treatment helpful. 

In the next few days, I will begin a new direction - a new plan/protocol.  We think we've maybe found part of the answer but we're not sure if it's the only thing going on.  I'm feeling better about this than the others, simply because this seems to fit so much better with my whole life and not just the past almost 3 years.  Part of me longs to be excited and hopeful while the other part of me screams to have caution so as not to be let down again. 

It's hard to publish posts like this because most people are caring and awesome and want to be excited with me/for me!  But sometimes, letting people know we're trying this now or we think we found the new answer makes things harder for me.  Hard because sometimes without knowing or realizing, you expect real results this time.  When I call and don't have good news, I hear the disappointment in your voices and even though you're not disappointed with me, I sometimes feel like I've let everyone down again.  It's a lot of pressure to always have people wanting to hear you're better. 

So, once again, I'm asking for prayer.  I want NEED this to work.  I am at a place where I really need some encouragement by progress with my health.  Don't get me wrong, your prayers, calls, cards, emails, etc are a HUGE encouragement but I'm really needing some results here.  I'd LOVE a miracle; to wake up tomorrow and be healed completely would be terrific!  And, of course, I want that!  But I'd also LOVE to have made even some slight progress and even though this new protocol gives SLOW results, I'll take it - if it would only mean we were finally on the right track. 

I'm also asking for prayers for wisdom for me and my doctor.  He's given me a couple other treatment options to research, too, that we can do in addition to the new protocol.  Please pray we make the best decision for my overall health.  

Thank you so much for reading, for your thoughts and prayers, and for encouraging me when I need it most!