Be Thankful

I was inspired by a friend who blogged about the "Thankful Tree" she created for her family to count 30 days of blessings this month. Ever since reading Noel Piper's Treasuring God in Our Traditions I have wanted to instill the importance of Christ-centered traditions in our family, especially during the holidays when our hearts can be so easily swayed by the things of this world.

I found this tree easy enough for a non-crafty person like me, and I was blessed to use coupons and sales to purchase most of the items at a craft store. I used a mason jar I had on hand and filled it with rocks to hold the branch. I found leaf stencils online and traced the leaves on construction paper. Then I clipped the leaves on the tree using mini clothes pins. I'm sure you could easily use real tree branches, but I used a plastic one so I can just reuse it year after year.

My daughter is already excited about it and can't wait to write something she is thankful for on one of the leaves tonight! After we write our thankfulness we will verbally praise God through prayer. I hope this is a tradition she will remember and carry on with her family one day if God blesses her with one. Most of all I hope she learns to be grateful for all that God has given us and for who He is. And this is key because as Noel Piper said,

" It's amazing how many people can say, 'I'm thankful for...' without admitting that God is there to hear their thanks. And they are certainly not giving him credit for whatever it is they are enjoying." (p. 72 Treasuring God in Our Traditions). 

I think this exercise of thanking God might be quite therapeutic for me as well as I focus on the good even in the midst of hard days because there is so much to be grateful for!
  

God at Work

It may seem like I only blog about how hard life is for us and honestly, life is very  difficult for us. Sometimes I feel like we just we just can't "catch a break" (of course we know God is in control and nothing is left to fate or chance). I have often said, "I just wish something could go right for us!". The truth is good things do happen and God is working to provide and care for us through our suffering even when we don't feel like He is or see His works.

Recently a reader posted in the comments that she keeps a journal and every day writes down 5 things she is thankful for. I have never been a "journaler", but I just may start! I think we often don't count blessings unless they are huge, when in reality ever second of every day God is at work in the lives of His children - sustaining them, loving them, and giving them grace.

I don't often write about God's care for our lives, maybe because I don't take the time to ponder His watch care.  But here's a few examples of God's work in our lives lately:

• A college friend sent us their tithe check for $200 because they were moving and were in between churches. That day we received the check I had to have two dental fillings that cost about $80 and our car needed new brake pads which was $100. God provided - and this is not the first time this has happened!
•  I've found a massage therapist trained in an alternative technique called structural integration. I had one session and it seemed to help me have a few better days as it especially lessened tension in my upper back and neck. It's not going to fix my pain, but it might help me manage it a little better. Praise God! (Pray it continues to help!)
• We filled out a financial aid application for the MRI I had out of state back in May (side note: I've learned to always ask for discounts and financial aid when paying bills, sometimes they will give a discount if a bill is paid in full and most places will let you pay what you can without charging interest as long as you pay a little each month.). We were told today we will be given a 95%  discount. That brings our $410 bill down to $20.50!!! Only God can do that!
• I've prayed off an on ever since my pain began about trying to find a primary care doctor, but never found one that I felt comfortable with and who seemed to want to help. Last month I finally had an appointment with a doctor who goes to my church (she accepted me even though her practice is full). She was very helpful in prescribing pain medication for as needed flares and I know I can go to her for referrals or whatever I need! Thank you God!

I haven't shared prayer requests in some time, but I have some things I would appreciate prayers about:

• Tomorrow my husband has a 2nd interview for a job that seems like a very good match for him and would pay significantly more than he currently makes. This job would however bring lots of major changes to our lives so we really need prays for wisdom and that God would provide for us (if not with this job, with a different one as my husband's current job has horrible hours and poor pay). Pray that we would trust God's good providence no matter the outcome of the interview.
• I've been experiencing some new pain in the front of my hips and in my groin ever since I tried the aggressive treatment in May as well as continued increased of my "normal" pain. This "hip" pain is very different than anything I have ever experienced. I have pain walking and often feel my hip is locking up (it even snaps sometimes). Then yesterday I went to a local PT who tried some stretching that has caused even more sharp pain in my pubic bone. There has been some research that correlates hip pathology and pelvic floor pain. Please pray that God would give me wisdom to know if I should see a hip specialist. Better yet, pray that this pain will resolve on it's own...it's always scary when I get more pain!
• Tomorrow I am seeing a doctor about some pain I've been having for about 4 months now. I'm not sure if it is just my heightened central nervous system that is causing me to perceive pain that wouldn't be so debilitating to the average person, or if there is a separate issue causing the pain. Pray that the doctor will have wisdom and there might be a treatment to help with the pain. 
• On Monday I see a new pain doctor locally. Pray that he would be receptive to the fact that I don't want any more interventions (i.e. injections, spinal cord stimulator, etc) and that he would be able to think outside the box to help me find a medication regime to help keep the pain under better control.
• Pray that our joy would be in the Lord and we would trust Him and not worry even when when don't see Him working.

God is at work even if things like financial provision are not happening in your life. He is always at work for our good and His glory. He is working when you hurt so bad you can't get out of bed and when you get a raise at work. We may not always see or understand His providence, but we can rest assured He's at work!

A Living Hell

I've heard people with chronic, debilitating, and unrelenting pain speak of their life as a living hell on more than one occasion. During my most painful moments I have often thought I may be experiencing a little taste of what hell might be like. But then I read this article about temple prostitution in India and I was quickly reminded how much worse my circumstances could be.

Technically temple prostitution is illegal in India, but the 5,000 year old practice is still widespread with an estimated tens to hundreds of thousands of prostitutes throughout the country. This is primarily driven by the financial burden of daughters, who require an expensive wedding dowry, on the poorest of India.  "India is the most dangerous place in the world to be a baby girl...an Indian girl aged 1-5 years is 75% more likely to die than an Indian boy making this the worst gender differential in child mortality for any country in the world."(source) For those unfamiliar with the "gender-cides" taking place in India and China due to cultural and socioeconomic barriers which create a desire for boy children rather than girl watch this documentary trailer to be released some time this year.

A poor family in India who has a third of forth daughter might choose to sacrifice their infant girl to the goddess, Yellamma, in hopes of gaining her favor and easing their financial burden. As babies they are exploited and when they reach maturity at 11 or 12 years of age they begin a life of prostitution. The girl is considered to be married to the goddess once dedicated and can never marry a man. When their bodies are no longer desirable they are abused because of the stigma they carry. "They can never escape from it. It’s a trap that they’re stuck in; it’s a living hell that they’re experiencing.” (source)

It's hard to believe that this is reality for girls and women around the world. I often wonder how many women who are in bondage to this slavery suffer from pelvic pain in silence while their bodies continue to be abused. It sure makes my suffering look very small. And to think that Hell is even worse than being a temple prostitute in India...I can't imagine! Unlike my suffering, the eternal suffering of Hell will have no end (Matthew 13:41-43, 2 Thess 1:7-9). Salvation through Jesus Christ is the only hope any of us can have in this world (John 14:6). Do you know Him?

"There is therefore now no condemnation for those who are in Christ Jesus. For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us." Romans 8:1,18

Thankfully there are ministries that are reaching out to those oppressed by the sex industry such as this and ministries like this working at getting to the heart of the men, which is most often the root of this industry.

Make it Count

Well folks, today I'm 30 years old. Honestly it hasn't been a big deal to me since I already physically feel like I'm much older, haha. Some people worry about their physical appearance or want to make sure to live life to the fullest because they are scared of getting older. My appearance and social life are of little importance to me these days as I just really want to get rid of this pelvic pain and be able to sit again!

My uncle wished me a happy birthday on facebook and said, "make it count". An interesting comment when I first read it, but a true challenge. Every day, month, and year that we are given is for a reason, so we should make it count. Knowing my uncle, he did not mean to "make it count" as in "live it up", but rather make it count for the Kingdom of God.

I've often found Steven Curtis Chapman's song "Do Everything", that came out last summer, a real faith booster for me. Based on 1 Corinthians 10:31

"So whether you eat or drink, or whatever you do, do all to the glory of God."

I made up some lyrics that fit very roughly with the bridge for those of us physically suffering.

[my lyrics]
Maybe your looking out the window
Wondering what's the purpose of this pain
Or maybe your missing your son's game
For the Fifteenth time this year

Maybe your laying in the bed
Watching the world pass you by
[Chapman's lyrics]
Anywhere and everywhere that you are

Whatever you do
It all matters
So do what you do
Don't ever forget

To do everything you do to the glory of the one
Cause He made you to do
Everything little thing that you do to bring a smile to His face
And tell the story of grace as you do
Everything you do to the glory of the One who made you
Cause He made you to do
Every little thing that you do to bring a smile to His face
And tell the story of grace with every move that you make
And every little thing that you do

That's my prayer this year. No matter the challenges and trials that come I pray God would help me to do everything, even if it feels like nothing, to His glory. Because even lying in bed in pain matters to Him and through that I can bring God glory by His grace. So today, while my life at 30 looks much different than I ever anticipated, I'm praising the giver of true life for another year to serve Him!

So thankful for my sweet husband who threw me an almost surprise 30th birthday party tonight! :)

Still, My Soul -Update

Tomorrow I will be traveling to see a new doctor. I wanted to post an update for those of you who so faithfully pray for us.

Praises:

• The week before Christmas my husband was rear-ended while driving home from work. We received a check from the other insurance company for about $700 more than the cost to actually fix our car! In God's mysterious providence my husband had the accident on the same day that I received the $900 bill that our insurance denied for the anesthesia portion of my botox procedure this past August. When calling about this denial we found out that insurance should have never paid for the actual botox procedure itself (a mere $10,000), but by God's grace they did. Insurance told us that if we tried to dispute the $900 that they could realize their mistake and revoke payment of the larger portion, which we could not afford.
• We have continued to receive generous gifts from family and friends which have kept us from depleting our savings. Praise God for his continual provision.

Prayer Requests:

• Tomorrow (Thursday) I will be seeing a new pain management doctor in hopes of getting my pain under better control. I will have a couple of decent days followed by several really bad days that often keep me confined to the house or even bed. My pain, while still debilitating, was better managed prior to my August botox injections. Please pray this doctor will be compassionate and will have wisdom to help me.
• Some pain that I experienced during my pregnancy was controlled decently, but has recently come back (to a lesser level). Sometimes it all seems more than I can bear. Please pray that God will help me figure out how to get this back under "control".
• I have submitted my disability application appeal. While the attorney has already informed us another denial will be most likely, pray that God would surprise us all and that I would be granted disability. While not a long term solution to our financial needs, this will allow us to better pay for our monthly bills and especially medical bills.
• My husband is in the application process for another job. We do not know if it is wise to leave his current position however as he has a good name within the district and hopes to be promoted in the next several months. Please pray for clear direction.
•  We continue to covet prayer for wisdom as to which treatment paths to pursue. There are several options we are considering in the coming months and we have to use our resources wisely. We pray God would restore at least some health in the coming months.
• While the battle with chronic debilitating pain is bad, the battle to stand firm in the faith and resist temptation is often equally hard. Please pray God would give us great hope in His sovereignty and peace as we trust Him.

Yesterday I was able to drive 20 minutes and run some errands after getting a massage. It was not easy, but I was encouraged. Often when I have better days I am hopeful that I will not always be in so much pain and debilitated; however, today, I am reminded that I am far from "normal" as yesterday's efforts are paying their toll on my body. Over the last several weeks I have been so encouraged and strengthened by the truths of "Still, My Soul Be Still" by Keith and Kristyn Getty.

Praying today that my heart will not be moved by lesser lights and fleeting shadows.

 

 

P.S. I'm now on twitter for all my "tweeting" readers. Follow me @PurposePain

Swimming: A Prescription for Pain?

The smell of chlorine (including bleach!) takes me back to those grueling practices and long meets. It almost seems like another lifetime, but I was a competitive swimmer for about 8 years- all through middle school and high school. I have loved to swim since I was a toddler, but didn't start swimming until I was about 10 years old. I swam age group (United State Swimming) and for my high school. I wasn't great, but I still hold some school records and was one of the top swimmers in the state in my favorite event, the 100 yard backstroke.

I devoted a lot of my time to swimming and it was a huge part of my life at the time. I have often said in recent years I wished I had not spent so much of my growing up years in the pool. I failed to learn skills such as sewing that would have greatly benefited me for my current role as wife and mother. But swimming did teach me discipline and gave me the opportunity to be an example and share my faith.

When I look at this picture taken during my junior year of high school it is hard to believe that I used to be able to swim 3+ miles a day, 5-6 days a week! I struggled with shoulder pain on/off some, but really I was healthy and strong. I remember getting out the pool after racing and my legs would just burn and my muscles would ache. Kind of the way I feel when I wake up in the mornings now!

After I graduated high school I rarely swam other than for leisure. I still enjoyed exercising, but running was much more efficient both time-wise and for losing/maintaining weight. We've been blessed to be given a greatly discounted membership to our local YMCA, my old swimming stomping grounds. Swimming and walking are about the only two types of exercise one can do with pudendal neuralgia. I really haven't tried swimming much until recently. I went to the warm water pool a few times last year and walked around, but I always came home hurting because, even though I didn't feel much pain while I was in the water, I  nonetheless overdid it. It's hard to get rid of that competitive nature!

A couple weeks ago I was feeling sorry for myself for being so weak physically and decided to give swimming another try. I swam 16 lengths which is 1/4 a mile. I didn't kick much and obviously didn't do a flip turn. It was hard, but it felt good to actually be able to do some physical activity again! After my short swim I got in the warm water pool and let the jets hit my back. A lot of people around the YMCA still know me and some comment that they are surprised to see me do so little, but they have no idea that to me it is HUGE! Sometimes it's not worth going into the details.

It's a small step and obviously not one that will produce a "cure", but maybe it will help my muscles keep from wasting away without increasing my pain too much while I wait for some more long-term relief. I am thankful for God's small graces that bless me and make the hard days a little more enjoyable. And while I may feel like my competitive swimming days were somewhat non-essential, I know God had a plan. In fact, he ordained these pain-filled days long before my first swim meet (Psalm 139:16) and perhaps my current pain is part of the reason God gave me a love for swimming and led me to compete in the first place.

10 Reasons I am Thankful for my Pain!

While standing at my kitchen window this morning, I could see the runners of our town's annual Turkey Trot 5K race. I saw families running/walking together pushing their children in strollers and I immediately felt a little cheated. I tried to think of those who are confined to wheelchairs who would love to even walk a little like I can, but it didn't help. It's a bad morning pain-wise and in general I feel kind of puny. I think I might be getting the "bug" my daughter has had. So to combat my feelings of discontentment I need to record the ways God has been good to me and why I am grateful for my pain.

1. My pain has helped me have more of an empathy for people with chronic illness or going through various types of suffering that I never had before.

2. I have met many people and made friendships that I would have probably never made had chronic pain not entered my life.

3. I have a greater longing and desire for Heaven as I am learning that NOTHING in this world will ever satisfy me like Jesus.

4. My pain has allowed us to live close to my family so my daughter has such a close relationship to her grandparents.

5. My pain has helped me learn to rely on God's grace instead of my own abilities and strengths.

6. My relationship with the Lord has grown and the truths of the Bible have become very real in my life.

7. Because of Jesus I have better learned how to offer hope and encouragement to others who are also suffering (2 Corinthians 1:3-4)

8. My pain has helped me gain a better perspective on life and not worry as much about "the small stuff".

9. My pain has helped our marriage focus on it's sole purpose (being an living example of Christ and the Church) and has helped me focus on the importance of teaching my daughter God's truths at a young age so hopefully she will have a firm foundation in this difficult life.

10. My pain has helped me be more aware of and grateful for God's blessings in my life!

What are you thankful for today, with or without pain?

A Home for the Lonely

God makes a home for the lonely”  Psalm 68:6 (NASB)

As a newlywed I naively thought that marriage would be the end of my loneliness.  I quickly found out I was greatly mistaken. Despite having other married friends, I often found myself lonely especially since my husband worked a lot of evenings. 

Now that I struggle with chronic pain and my husband continues to work a lot of evenings I still struggle with loneliness at times. Those evenings I am home alone with my 2 year old are when Satan most seems to tempt me to be anxious and despair. It's when I often get "that feeling" I blogged about recently.

After my husband and I were married 11 months, we moved to my hometown to be involved with ministry at the church my father pastors. My chronic pelvic pain began about 2 weeks before we moved and, as we later found out, at the time I got pregnant with our daughter. We know now that God, in His sovereign design preordained our timely move for reasons much greater than our own plans of doing ministry before journeying to the overseas mission field. God worked in my heart and my husband's heart to bring us to a town neither of us desired to live long-term. But now, we are so grateful for our Father's care in bringing us to live near my parents and large extended family. I cannot imagine dealing with this pain and a small child without their help.

But in moving, we "sacrificed" great friendships. It is just recently that we have been able to make closer friends since moving almost 3 years ago. It has been a time of loneliness, especially for an extrovert like myself. After living overseas and experiencing a very different way of life, we find ourselves in rural America learning to relate to people with different life experiences and goals than our own. It has been a good growing experience for us.

Now that I suffer with chronic pain that is invisible to the outside world, I have begun to experience a new type of loneliness. There is a special bond that I feel when I talk to others who have a chronic illness or have experienced great suffering, and I am thankful for those friendships I have made. But it is sometimes difficult for me to form close friendships now with people who have not (yet) experienced some kind of suffering. It's often hard for me to relate to "normal" life now and sometimes I become cynical, although that is not my heart's desire. This is an area of my life I need great grace both from others and from the Lord.

Can God really make a home for the lonely as Psalm 68:6 says? How? What about the single person who lives their whole life lonely, longing for a family? I was re-reading a little booklet my mom sent me when I lived overseas called How to Overcome Loneliness by Elisabeth Elliot, who is one of my favorite authors. In this booklet, Elliot talks about her friend who is single and asks if she is lonely. The friend says,

"Oh, no. You see, I have a sense of expectancy every day. What does the Lord want to do with me today? I have no agenda of my own." "What do you mean by agenda?"  [Elisabeth asks]. The friend responds, "Thinking there's only one solution, and God has to give you that or nothing. You have a closed mind. A closed mind is a closed heart and a closed door."

No agenda of my own.... Isn't that what we all struggle with, whether it be loneliness or any other unfulfilled desires. We want our life to be a certain way because we have a plan, an agenda. But God promises to make a home for the lonely! He is our home, and in Him our desires become His desires (Psalm 37:4). "No good thing does He withhold from those who walk uprightly" Psalm 84:11.

I have looked to my husband, family, friends, TV, books, the Internet, exercising (pre-pain)...you name to find comfort in my loneliness, but how often do I look to God? He is the only one who can give us true comfort and peace.  For those who trust in Christ as their Savior, God has made His home in us through the Holy Spirit! And there is no better home we can have.

A Mist

My "baby" girl turned two today. Her birthdays have always been a mix of emtotions for me: excitement at seeing her grow up, gratefulness for her life and health, and saddness as I think about the way things are and how they might have been different. I am sure all mothers are melancholy to a degree as they think about those baby days that went by so fast. We think, if I have another child some day I'll really enjoy the little days and not worry so much, but even then we blink and time is gone.
My hopes of having another baby some day seem to be passing me by in the reality of life with chronic pain.  I want so badly to enjoy the child I have, but I worry that it's all going so fast and I am unable to do the things I want with her. Tonight she cried wanting me to rock and read her a bedtime story (my husband always does this if he is not at work). I am so flared up from my procedure that sitting is really difficult right now, even with a cushion. It's hard to explain the inability to sit to a doctor let alone a two year old. But all I wanted to do tonight is sit and read my baby a bedtime story on her birthday. Don't I DESERVE that? Doesn't she?

No. We don't.


"Come now, you who say, "Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit"-- yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, "If the Lord wills, we will live and do this or that." James 4:13-15


Our life is a mist. We aren't here for long in the scope of eternity. We may have lifelong chronic pain or we may get through this life with very little suffering. But it's still just a mist. We can't re-live our child's baby days or change the outcome of a decision and we can't lengthen the lifespan God has ordained for us (Psalm 139:16). But regardless our lot, we can live each day we've been given with the purpose of making great God's name. After all that's why we are here, even as a mist.

My precious daughter calmed down and let my husband read her a bedtime story while I "sat" on my knees beside the rocking chair on the floor. I leaned in to listen to to "The Three Billy Goats Gruff" (stories about trolls are not scary yet :)) and my "baby" put her arm around me and pat me as if to say, "it's ok mommy, I love you." It's a moment I hope not to forget.

Soul Surfer

 Last night my husband and I watched Soul Surfer, the story of Bethany Hamilton who lost her arm to a shark at the age of 13 while surfing near her home in Hawaii. Bethany is a believer in Jesus Christ and while the movie didn't portray this as well as I'd hoped, I really enjoyed watching the documentary about her on the special features of the DVD.  It was amazing to me to watch, in the documentary, a little girl at 13 years old who just lost her arm and possibly her dream of professional surfing say that she believe God had a purpose in it. She says on her website that faith in Jesus means "everything" to her. 

Bethany also says:

"Knowing that God loves me and that he has a plan for my life, that no shark can take away and no contest result can shake, is like having solid rock underneath me. Bad things are bound to happen to everyone. That's life. Here's my advice: don't put all your hope and faith into something that could suddenly and easily disappear. And honestly, that's almost anything. The only thing that will never go away, that will never fail you, is God and your faith in him." source

Watch it....you'll be encouraged!

Will of God

"Rejoice always, pray without ceasing, give thanks in all circumstances, for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18

A dear friend gave us a CD called Seeds of Purpose when our daughter was born.  It takes 12 Bible verses and puts them to music in such a way that both kids and adults enjoy it. My daughter is  almost two and is already singing some of the words of scripture! I love the scriptures they chose as well and I find it so encouraging. I can be in such pain and discouraged and then I turn on this CD and hear "If God is for us who can be against us?" (Romans 8:31).  I feel my spirits lift as I am again reminded of God's complete control over my life and the chronic pain I am going through!  I highly recommend this CD (they have several other volumes as well) if you have kids and even if you don't.

The last verse on the CD is 1 Thessalonians 5:16-18. I was listening to it the other day and was struck by both the simplicity and complexity of this verse. God's will for our lives is that we would always rejoice, pray without ceasing, and give thanks in all circumstances.   Thousands of books and sermons have been dedicated to helping people discern God's will for their life.  "Should I take this job or that job, marry this person or not, move or stay where I am, go to this doctor or that doctor?"  While God certainly wants us to consult His word and pray when making important decisions He has not written specifically in His word what His will is for our lives in every decision we will make.  (He does promise to give us wisdom when we seek Him, James 1:5)

God does however tell us three things that are definitely in His will for our lives: to rejoice all the time, pray all the time, and give thanks all the time. It sounds simple, but how difficult it is to rejoice when the pain doesn't go away, pray instead of worrying when we have a big decision to make, and give thanks when the dog vomits on our freshly mopped floor (as mine did this week). 

For those of us who struggle with chronic pain and illness, this brings great encouragement that even if we can't get off the couch we can be in the will of God by striving to rejoice, pray, and give thanks no matter how difficult the circumstances of this life may be. Life is not about what we can "do" for God, but about making much of God through our life by His grace.

The Picture of Health

I was recently asked how I was feeling to which I responded my usual, "so-so" or something to that nature because I really have no idea how to try and explain to someone how I feel on a daily basis.  The person responded with, "well you always look the picture of health".  I know this person was trying to be nice, but their words actually hurt me. 

Nearly 1 in 2 people in the US have a chronic condition and approximately 96% of those have an illness that is invisible. (Source) Yet, we are still so uneducated about invisible illness. I know I was before I became invisibly ill and I am even a nurse! This year the National Invisible Chronic Illness Awareness Week is September 12-18.  Lisa Copen founder of Rest Ministries founded Invisible Chronic Illness Week in 2002. If you or someone you know is suffering from an invisible illness you can find support at www.invisibleillnessweek.com

One way to spread the word about invisible illness is to share about our own invisible illness. Here's my response to 30 Things About My Chronic Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

Pudendal neuralgia (we think, hopefully we’ll know more in 3 weeks when I travel to Phoenix to see a pudendal neuralgia specialist). I also suffer from central sensitization (basically my nervous system is kind wound up causing hypersensitivity to pain). This has caused symptoms similar to complex regional pain syndrome and widespread muscle pains. I have had other diagnoses along the way as well including sacroiliac joint dysfunction and chronic myofascial pain syndrome and the generic chronic pelvic pain, so only God really knows what’s wrong with me!

 2. I was diagnosed with it in the year:

December 2010

 3. But I had symptoms since:

November 2008

 4. The biggest adjustment I’ve had to make is:

Not sitting or only sitting for short periods with a cushion that takes the pressure off my pelvic area.

 5. Most people assume:

                That I am fine because I am young, small, and look healthy (other than that cushion I carry around for my "back").

 6. The hardest part about mornings are:

If I do not get at least 8 hours of restful sleep I will wake up feeling like I worked out all night long. My muscles will be so tight and my neck especially will hurt.

 7. My favorite medical TV show is:

I don’t know what this has to do with anything. I don’t watch much TV, but I used to love the old series “ER”.

 8. A gadget I couldn’t live without is:

                Is a computer considered a gadget?

 9. The hardest part about nights are:

Sometimes falling asleep. The end of the day is the worst for me pain wise. Usually it feels like   my pelvis is on fire and there is a knife sticking in my sacrum. Also my legs/knees/feet/ neck/shoulders will be really tight and sometimes my legs/feet will burn. I also sleep walk some nights (always have) which doesn’t allow for restful sleep.               

 10. Each day I take __ pills & vitamins. (No comments, please)

Most days I only take 6 pills. But if I am in a flare I may take Ibuprofen around the clock or other pain medications on top of this.

 11. Regarding alternative treatments I:

Have tried acupuncture, but am not a fan (at least of the type I tried). I do love massage. I use a TENS unit occasionally (not for sure if that is considered alternative).

 12. If I had to choose between an invisible illness or visible I would choose:

Depends on the illness. I am not naive to think visible illnesses are easier, but I do think they get “respect” or attention from people that an invisible illness doesn’t get.

 13. Regarding working and career:

I am a nurse, but due to my pain and the nature of my profession I can only tolerate working about 8 hours a week, preferably in 4 hour shifts. Even this is becoming more difficult for me. It’s really bad for me to do bending, lifting, pulling and of course I do that every day as a mom to a toddler.

 14. People would be surprised to know:

I am in pain all the time. Some days are better than others, but I don’t remember what it felt like not to have pain anymore.

 15. The hardest thing to accept about my new reality has been:

                Not being able to do whatever I want, whenever I want to do it.

 16. Something I never thought I could do with my illness that I did was:

                I can’t think of anything. Maybe I haven’t lived with this long enough.  

 17. The commercials about my illness:

There are no commercials about my illness. It is extremely rare and there are only about a dozen specialists in the world who treat it.

 18. Something I really miss doing since I was diagnosed is:

Going on dates with my husband. It’s hard to go on dates when you can’t sit comfortably. We do occasionally, but it’s not extremely enjoyable like it used to be.

 19. It was really hard to have to give up:

Traveling for leisure. After living overseas and traveling to several countries I now only travel for medical treatment.

 20. A new hobby I have taken up since my diagnosis is:

                Writing. I used to write a good bit in high school, but enjoy it a lot more now.

 21. If I could have one day of feeling normal again I would:

Spend it with my husband and daughter and doing something fun like going to an amusement park. I would also sit and rock my daughter to sleep. If I could have a week I would go to India and share how God has been so good to me even in my suffering.

22. My illness has taught me:

So much! You can’t judge someone without really what’s going on in their life. Greater empathy for others’ suffering. And it has deepened my faith in the sovereignty of God more than anything else in my life!

 23. Want to know a secret? One thing people say that gets under my skin is:

Call me if you need anything. (It’s a nice gesture, but I need help everyday, do you really want me to call you every day? Why can’t others call me and offer to help me with cooking or cleaning or just to visit?)

 24. But I love it when people:

                Ask me how they can pray for me.

 25. My favorite motto, scripture, quote that gets me through tough times is:

                There are so many! But one of my favorite this last year has been
                Psalm 16:5-6

“The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in  pleasant places; indeed, I have a beautiful inheritance.”

 26. When someone is diagnosed I’d like to tell them:

Do not spend all your time researching and looking for a cure/healing. Invest your time seeking the Lord and how He would have you use this suffering for His glory.

 27. Something that has surprised me about living with an illness is:

People (even those closest to you) don’t know what to say or how to offer support. So most of the time they don’t do anything.

 28. The nicest thing someone did for me when I wasn’t feeling well was:

An anonymous person left Christmas gifts for me and my family on our front porch last year. I don’t know that we’ll ever know who it was. It was so kind and unexpected.

29. I’m involved with Invisible Illness Week because:

I want to get the word out. There are millions of people living with invisible illness and you don’t have to look very far.  There is so much you can do to minister to them. Don’t be scared to talk to them about their condition and don’t think that just because they have lived with this for 20 years it’s no longer a struggle for them. Just because you see them out at the park with their child or running errands, do not assume they are feeling better. Most people with chronic illness have to “suck it up” and go on with life as best they can.

 30. The fact that you read this list makes me feel

                Special! Now, go share what you’ve learned with someone else J

Upcoming Pudendal Neuralgia Specialist Consult

In about 3 1/2 weeks I will travel to see one of the leading specialists for pudendal neuralgia (I really like this concise article that explains pudendal neuralgia, its diagnosis and treatment options). This doctor is one of only about a dozen surgeons in the world who perform surgery to release the pudendal nerve if it has become entrapped in ligaments, muscles, or scar tissue. Here is a great link to an online radio talk show interviewing one of the country's leading pelvic floor physical therpists and pudendal neuralgia experts.

This appointment will most likely only be a consultion. There are still other things such as botox injections that he will probably want to try before surgery is even considered (I may unfortunately have to make multiple trips to Arizona).  I have had a few hours relief from a pudendal nerve block and most of my symptoms are characteristic of pudendal neuralgia (PN).  But I have also been diagnosed with sacroiliac joint dysfunction in the past. I have had physical therapy manipulations of the SI joint, worn an SI belt to stabilize my pelvis, and tried an SI joint injection with no relief.

While it seems most likely that PN is the correct diagnosis, I worry that maybe I have waited 7 long months for this appointment in Phoenix for nothing. Maybe the doctor will not think I have PN, then what will I do next? Did I make the wrong decision to go to Phoenix? I have prayed about this decision a lot and even pray now that if it is not the right direction to take that God will not allow us to go to Phoenix. 

It is easy when we have big decisions to think and worry that the final outcome is dependent on ourselves. That we could choose to do something that is outside of God's will for us.  But I am not so sure that is really possible for those who are called children of God. Proverbs 16:33 tells us,

"The lot is cast into the lap, but it's every decision is from the Lord."

God in his divine providence is working all things according to the counsel of His will (Ephesians 1:11). Nothing happens by chance. Even our "bad" decisions are being used by God to bring about His purposes.  Verses like this and Proverbs 16:9 and Isaiah 46:9-10 bring great encouragement to me in times of doubt and worry especially concerning decisions. 

If God is control of the outcome of the blind casting of lots, I know that I can rest assured that God is in control of my life! Whether I go to Phoenix and have a confirmation of my diagnosis of PN and get treatment or I go and find out there is nothing they can do to help me, I know God is working all things for my good and His glory (Romans 8:28)!

Jehovah Jireh

Over the last year I have tried around 10-15 cushions to try and make sitting more comfortable (and I only sit when I absolutely have to like driving, church, work, and some meals).  I recently found a cushion online that I really thought would work, but unfortunately it cost $100 and if purchased it was not returnable. So I asked a ton of questions and after getting pretty good feedback I decided to give it a try. Unfortunately it was not as described. It was very soft  and not supportive even though I ordered the "firm" cushion. I explained my frustration and they said I could send it back and exchange it for the "extra firm" which is described as sturdy support that will keep you from touching the seat you are sitting on (which is exactly what I need). So I spent another $10 to mail it back and received it today only to be even more disappointed. It seems like they just sent me a thinner cushion that was the same firmness.

I was really hoping this cushion would help me be able to sit at church better and help me endure the 3 hour flight to Phoenix next month. I was even more frustrated that I spent over $100 on a cushion that will most likely go in a closet with all the other cushions that haven't worked.

A couple hours after I opened up the cushion, I went to the mailbox to find a check from the IRS for $289! After completing our income tax return this year we were notified by the IRS that we might qualify for an additional credit because we have a child. So we completed the paperwork and apparently it was accepted. What is the likelihood that two things we've been waiting on, the cushion and money from the IRS, would come the same day? God is so kind. In my disappointment and frustration, He reminded me that He is our great provider!

Ministry to those Suffering

Does your church have a disability/chronic illness/suffering ministry? Really, leave a comment if your church does. (Remember you can always leave a comment anonymously). It's definitely an area of ministry that is lacking in our churches today I think.


 In the fall of 2009 Dallas Theological Seminary began offering a new course of study called "Theology of Suffering, Disability, and the Church".  It is taught by DTS faculty, medical professionals, counselors, and those suffering themselves.  You can download over a 100 of these lectures free through iTunes university here

It is my hope to one day start a chronic illness ministry at my church, Lord willing.  These lectures along with Lisa Copen's book  How to Start a Chronic Illness Small Group Ministry are a great resource to help you begin ministering to those suffering. 

Even if you aren't interested in starting a "suffering" ministry, these lectures are a great encouragement for times when you are suffering yourself.  Hearing the testimony of others who have walked through great trials and kept the faith always increases my love and trust in our sovereign God.

Enjoy!

Friends

I live hundreds of miles away from the people I would consider to be my "best friends" in this world—the friends that I feel really know me and with whom I could share my deepest feelings and fears. I've prayed a lot for new deep friendships since moving back to my hometown, but that hasn't happened, yet. However, one of the blessings I have received due to my journey with pain is new friendships, either online or in person. Some of the people I have met have been fellow believers, others are not, but I've had the opportunity to speak of God's grace to them. And really that makes all the pain "worth it", to be able to help comfort others in their affliction like Christ has so graciously comforted us in ours (2 Corinthians 1:4).  And not just with fluffy "feel good" comfort, but with the truth of God's word.

One new friend, who brought me these beautiful flowers last week, is also struggling with chronic pain.  We are both back living in the same hometown after having similar life experiences. We have enjoyed several conversations and mutual support in our great God as we walk through physical suffering.  And without this "delay" of pudendal neuralgia/chronic pain I would probably be on the other side of the world, or preparing to be right now, and would more than likely have never met "Lilly".

"Lilly" is 25 and after treatment for stage IV endometriosis she began having widespread chronic pain.  Like my pain, the cause of it is a mystery. She is unable to work right now and has had to move back in with her parents due to the pain. She is often fatigued and normal everyday activities have become a chore for her most days. Tomorrow she travels to see a specialist with hopes of getting a diagnosis and better treatment. She looks forward to getting married hopefully in the next year and the thought of a lifelong chronic illness is difficult.  

Will you join me in prayer for "Lilly"?  First, pray for her complete healing. Please pray that God will use the doctor and that he will have wisdom, compassion, and will be able to help her gain a better quality of life.  Pray that she will get guidance as she tries to cope with this daily pain. And most importantly pray that her faith in God's goodness and sovereignty will be strengthened no matter the outcome of tomorrow's appointment or what the future holds. 

When I see lilies, I think of the passage in Luke 12:22-31 where Jesus tells us not to worry.

"And which of you by being anxious can add a single hour to his span of life? If then you are not able to do as small a thing as that, why are you anxious about the rest? Consider the lilies, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass, which is alive in the field today, and tomorrow is thrown into the oven, how much more will he clothe you, O you of little faith!" (v. 25-28 ESV)

Lilies are beautiful aren't they? Some varieties are planted in the ground and come back year after year. And they don't have to worry about a thing! Jesus says, neither do we! If God makes lilies, who have no eternal value grow and adore the fields, then of course he is going to take care of those who have been saved through Jesus and adopted as His children!

I love this....If we can't even do as small a thing as add an hour to our entire life span, then why should we worry? We obviously aren't in control. And that's a good thing.

"Lilly" thanks for being a friend and may you be encouraged that the one who clothes the grass with lilies is working for your good, especially in this time of chronic pain.

"Choosing to SEE"

Thanks to Sunshine Deals for Amazon Kindle I was able to get this book for $2.99. Some books are as cheap as 99 cents, but the deal ends tomorrow so check it out while you can!

 "Choosing to SEE: A Journey of Struggle and Hope" is by Mary Beth Chapman, wife of contempary Christian artist Steven Curtis Chapman. It's an autobiography of Mary Beth's life and particularly of her loss of their adopted child. I don't want to share too many details in case you choose to read it. But I highly recommend it. I always find great encouragement hearing about others' struggles and continued faith in the Lord. 

The book includes this quote by C.S. Lewis which I can relate to greatly. "We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." From my research it looks like this quote comes from Letters of C. S. Lewis. I know that God is working for my good in this chronic pain, but I often wonder how much more pain will God's good will include?

The Glory of God in the Gift of Disability

A beautiful example of how physical healing may not be God's best for our lives. Watch this video entitled The Glory of God in the Gift of Disability taken from Desiring God's Blog. I hope it encourages your soul like it has mine!

Daily Devotional

Most of you know I am so inspired and encouraged by the life of Joni Eareckson Tada. I was reading her Daily Devotional Joni and Friends and thought some of you might enjoy it too. Here's a little to entice you: "Earthly sufferings don’t simply aid us today: They will serve us in eternity." You can sign up to get her daily devotionals by email. There is also a link to her site on the right hand column of my blog under "Encouragement for the Troubled Soul". You won't be disappointed!

Raining Praises

I want to thank those of you who pray so faithfully for me and my family. I have some praises to report! Some of you know that my husband has been working a very low paying job (although he has a bachelor's and practically a master's degree) because our current life situation was meant to be temporary while we awaited going on the mission field long term.  With my pain levels increasing and no good treatment options in sight, I have been unable to work my job as a nurse.  The Lord has graciously provided a promotion for my husband that will make him an assistant manager.  The hours and pay still aren't great, but it's definitely better and there is room for advancement.  He starts tomorrow and is so happy to be finished with his current job. It's not only hard to physically suffer, but it is very difficult to also watch loved ones endure suffering because of my condition.

I had a better week last week I think.  I don't know if I felt a lot better or if I am just getting better at dealing with chronic pain, but probably a little of both.  When I say I feel better though I still can't sit (nothing helps that) and I still have daily pain, but the level just drops a notch or so.  I actually worked about 16 hours last week! Every hour helps our income greatly so this is a big praise! I realized now however that I over did it as my pain has increased. I have decided to try to work one 8 hour shift a week starting in May. I have only been working about 5 hours a week so this is a pretty big increase especially because my 8 hour shifts will most likely turn into 9+ hours.  I have spoken with my charge nurse though and if things are too hard I can drop back down to shorter shifts. Praise God my work has been so understanding in this situation. There are few jobs that allow you to work as little as I do and make good money.  Thankful again for God's providence in leading me to be a nurse, even though I've never really loved it (at least not as a nurse in a hospital in the States).

The increase in work has resulted in a major pain flare in my feet and legs. I had a lot of trouble with my feet last summer and fall, but once I got up to higher doses of Neurontin and wore better shoes the pain seemed to subside.  Unfortunately it is back with a vengeance. I have a naturally high instep and arches so this leads to difficulty finding shoes. I have also had some burning in my feet again so I know I really need to be careful so I don't end up being on the couch for a couple weeks again like I was last fall.  I basically had to get rid of all my "cheap" shoes and am slowly investing in good quality shoes. I got some new sandals today that are supposed to be good for my pain issues so I hope I they will allow me to stand for longer periods of time.  It's really hard to not be able to sit or stand for very long. I sure could use your prayers about this.
We've been hit with tons of rain lately. The rain always increases my all over muscle pains as well. Sometimes even my forearm muscles hurt!  But this weekend I was encouraged by how Jesus' resurrection gives so much hope for "gloomy" days.  My dad is a pastor and brought up a passage in his sermon that is not typically thought of during Easter. These particular verse really encourage me when the daily struggles with chronic pain seem more than I can bear.  I hope they bring you strength to serve the Lord no matter what your circumstance as well!


"We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4: 8-11; 16-18