2013 Year End Review

Is it just me or has this year gone by fast? It could be that I spent the first several months of the year recovering from arthroscopic FAI/labral tear hip surgery, but either way I think as they say the years do seem to go by faster as you age!

2013 has been a year of great blessing as I was finally awarded disability after a 2 year wait, but it's also been a year of great disappointment and hurt as two full-time church ministry positions (one we had been waiting on for 8 months) fell through for my husband and he continues to work the horrible, long hours and low pay of retail management. The past 3 months we have struggled to understand what God is doing in our lives or what He wants us to do, but we continue trust in His mysterious providence.

I've been a poor blogger this year thanks to headaches that began after I did an intense juicing detox this past summer (in hopes of it helping with my pain levels). I had a headache every day for 2 months that no medication, rest, or alternative medicine would touch! I continue to get them periodically now, but I am grateful to God I no longer have them every day. I do not know what caused the headaches, but my theory is that the detox and diet elimination (no sugar, gluten, or dairy) I tried for 3 months was very labor intensive and the long hours cooking and standing caused muscle compensation and strain resulting in headaches. I continue to try to eat as "clean" as I can because I do think diet affects the way we feel (though I am confident it is not the soul cause of my chronic pain), but I no longer am adhering to such a strict diet because my body could not handle it!

I am now 1 year post-op from hip surgery. In the last 3 months I finally feel like some of my surgical pain and muscle soreness has gotten better, but I still struggle to lay on my left hip for very long and I still have major muscle tightness (particularly in my IT band, adductors, quadricep, and psoas - though it's hard to tell how much of that is just from long standing muscle compensation and pain). My hip pain was not my worst pain pre-op and most days it is still not my most debilitating symptom. But I do struggle with hip pain if I am on my feet or walking a lot. Overall I would say that I did not see the effect from surgery that I had hoped (namely less overall pelvic pain and improved ability to sit), but I do not regret having the surgery. There were some scary days early in my recovery when it seemed I might have developed full blown CRPS, but while I do have symptoms of central nervous system sensitization I am grateful they are not as severe as they could be.

I have not done a lot treatment-wise this year other than occasional physical therapy visits, self PT (I've found the Therawand to be helpful for pelvic floor pain as well other tools mentioned here), massages (I've found I function much better when I get bi-monthly massages), and of course medication. The first 2 years of my debilitating pain I tried many invasive treatments that only caused my pain to flare and did nothing for my overall pain. Until there are major changes in diagnostics and treatment for pelvic pain I plan to continue to focus my efforts on pain management in the future.

I have spent very little time researching causes and treatments for my pain this year and have for the most part stayed away from forums and message boards. There is definitely a time and need for those things, but for me it has been good to focus on the life God has currently given me this year instead of worrying and wishing for a better quality of life. My daughter is growing up before my eyes so I've been trying to be as involved in her life as I can which leaves little energy for things like pelvic pain forums and blogging (one day my daughter will be in school and there will be plenty of time to work on my writing!).

Ever since my pain became debilitating and I began to accept my new life my biggest prayer was that if it was God's will for me to have chronic pain that He would help me get to a place where I could manage my pain and have a decent quality of life. In my mind I thought that would mean I would have pain managed by only occasional ibuprofen or Tylenol and I could sit for a couple of hours before having to stand up due to pain. I am FAR from those standards of pain management, but if I am very careful to stay within the limitations I've learned over the years including: very limited sitting, limited walking, taking medications, resting frequently throughout the day, getting frequent massages, stretching, doing physical therapy, taking warm baths, etc, many days I am able to care for my family, avoid pain flares, and have a decent quality of life (though very different from most 30 year old mothers).

I still miss my old life, struggle to fight for joy in the Lord, and am often lonely, but I am very, very grateful for how God is sustaining me in my journey with pain. 2013 brought many surprises (including a new puppy) and graces and because of the hope in knowing Christ as my Savior and Lord it is with joy that I can look forward to 2014 and what the God has in store for our family. I hope you've come to know that peace and hope and well. If not, feel free to email me at purposeofpain (at) gmail.com I'd love to talk with you more!

Sharing Christ's Sufferings

I can't believe it's been 6 weeks since I've blogged! For all my regular readers (if I still have any!) I'm so sorry. I have several posts in my head I'd like to write, but unfortunately my headaches and neck pain have continued for two long months now. I am conserving most of my computer usage/reading (as this flares up the pain) for my daily Bible study. (I am currently co-leading this Bible study, which has been great, but also stressful for me physically).

I've had a few days of reprieve here or there, but nothing long lasting and while I think the pain is structural coming from my sacroiliac joint dysfunction (pelvic misalignment) and resulting muscle compensation along the spine nothing I have tried has given me any lasting relief. Unfortunately, as I've mentioned many times before, I live over 2 hours away from my doctors and physical therapists and my local options have not been helpful for my complex case. I've had pelvic pain for close to 5 years now, so all of my medical professionals specialize in the pelvis. This is one of the hardest things about this type of chronic pain - trying to be my own doctor and figuring out how to get the next symptom that pops up back under control.

Today I was having a particularly hard day. My pain level was higher and I felt discouraged that I can't find a medical practitioner to help me with my head/neck pain. I try really hard not to cry or talk about my pain in front of my 4 year old daughter. But today she must have heard me in my room talking to my husband and crying. She came and hugged me and said,

"Mommy it's ok. I know your head and neck may not stop hurting on Earth, but one day it won't hurt anymore in heaven!"

My daughter quickly helped me remember that this world is not my home. And as I hugged her I felt joy that I could "share Christ's sufferings" (1 Peter 4:13) and in doing so help my daughter learn that Jesus is the greatest treasure of all - that nothing in this world, not even health, compares to Him.

Now, please don't get me wrong, I do not rejoice in my suffering the way I should. There are many days I wallow in self-pity, am mean to my husband, and a down right horrible example of Christ. But I am thankful that my suffering has allowed us the opportunity to teach my daughter about how to handle prayer that is not answered favorably (which is where she heard this response above), how to keep trusting in Christ when life is not easy, and how God is good when He gives and takes away.

I wish I could say, my break from blogging is over, but I'm not sure when or if my headaches will go away or become more manageable. Will you please pray that God will help me find resources to improve my pain or that He will take them away as quickly as they came on? And until then, please pray that God will help me to rejoice in my suffering and give me grace to endure this weary world.

Hip Update & Prayer Requests

It's hard to believe I am already a little over 6 months post-op from my left hip FAI/labral repair. Since I last reported I have not seen much overall improvement in my hip recovery. I continue to have decreased range of motion, especially with external rotation (I can't sit crossed-legged or do the "butterfly stretch") and flexion (bringing my knees to my chest is still difficult for me). But my hip PT thinks my hip joint is doing well, my remaining pain is coming from tight muscles and compensation/weakness. I am just struggling to get these tight muscles to "release". The good news is my knee pain has been better lately. I'm not sure exactly why, but the last 6 weeks I have spent a lot of time massaging my Iliotibial (IT) band and quadricep on my left side. I have also worn my SERF strap (thankfully I finally got insurance to cover it!) when walking for any length of distance. Whatever the reason is, I am thankful, though I am afraid it may come back at any time as I know I still need to strengthen my leg/glute muscles badly. Unfortunately every time I try I end up flaring my pelvic floor or another area of my pain.

One of the biggest frustrations of this last month has been my almost inability to lay on my surgical side again. It seems I have developed some thick scar tissue around to the two outermost surgical openings. I have tried lots of self massage and I also got this little gadget (pictured below) which can be found here to help with self massage, especially of my leg muscles, which I think might be helping some, but I can only tolerate laying a few minutes on my left side. Please pray that I will be able to get this worked out soon as it is already challenging because I cannot lie on my back due to sacral pain and I cannot sit for long (so I am spending a lot of time on my right side!).

I am scheduled to leave tomorrow for three days of treatment with my out of town hip and pelvic floor PT. Unfortunately we've had a lot of troubles with our van that we got used last December, when our car was totaled by another driver. We just spent $600 to put in a new air compressor, after spending $300 the week before for more repairs, but yesterday we realized the air conditioner is still not working right. It's just too hot to drive 2-3 hours without A/C right now and I need to be able to lay down in the van when traveling so as not to increase my pain. Please pray that our mechanic would be able to fix the van quickly in the morning so that we can still leave to get treatment. I am currently without a PT locally so I really need to have some PT in order to keep my pain levels a little lower. I stopped the myofascial release PT, though I might go back as nothing else locally has helped as much as that, which sadly wasn't much.

While I know I need to go have therapy, honestly I don't feel like going because I have had a headache for the last 10 days. I'm not sure what exactly has brought this on, but man do I have empathy for those who have migraines! Headaches just make me tired, irritable, and getting anything done can be a challenge. Some of you who have been around for a few years may remember I struggled with headaches back in 2010. A combination of massage, medications, new pillow, stretches, and the grace of God finally took these headaches away. Please pray that God will relieve these headaches and/or I will figure out what is causing them and how to minimize them.

Over the last few weeks I have made some drastic diet changes (more on that coming soon) to see if it helps with my pain (unfortunately currently I am in more pain than I have been in a while with these headaches!). I have also changed some supplements, but when the headaches started I immediately reverted back to my normal medications/supplements and my headache didn't start until day 12 of my dietary changes so I'm not sure that the two are related. With my new dietary changes I have had to spend a lot more time cooking and I wonder if that has something to do with the headaches. This would make sense because so much of my pain is biomechanically orientated. I have had one massage since they began, but I didn't feel any relief from that. The week before last was also a very busy week for us as my daughter had Vacation Bible School and I have not gotten as much sleep as I need lately so the headaches could be caused by a combination of things.

Some of you who follow my Facebook page may have read my status update from last weekend:

"Our "new" car we got used in December after a car accident has needed almost $1000 worth of repairs this week. Just "luck" that I was approved disability this week? I don't think so. This is God's sovereign hand at work!

Also, is it just chance that today we sold a bike rack for $40 we were never able to use due to my pain? This is God's providence working for our good and His glory!

Of course God is still sovereign when we don't get disability and we don't make extra money, but this sure is a blessing and we want to praise God for his favor! (The extra $40 will pay for a little date my husband and I already had planned - a VERY rare treat for us!)"

It's interesting how quickly things can change! That was a good day, things were "looking up" for us. We had received word that I was approved for disability, gotten some extra cash, and my husband and I were going on a date. A week later, when our car is still not working properly, my head feels like it will explode, and I might not be able to go to my out of town PT as planned I will admit the statement, "Of course God is still sovereign when we don't get disability and we don't make extra money" is not as easy to say. Sadly my response yesterday (when we realized the van air conditioning was still not working and my head was pounding after taking my daughter to a birthday party) was not one of trust in a sovereign God, but one of anger, doubt, and frustration.

The good news is God is faithful even when we are faithless (2 Timothy 2:13). Our faithlessness, as children of God - saved by the blood of Christ, cannot nullify the faithfulness of God (Romans 3:3). And even if we don't understand or want to believe it at times, God is always in complete control, working all things together for the good of those who love Him (Romans 8:28). Thanks for praying!

Lots of Prayers Needed!

Sorry for the lack of posts lately. This last month my parents have been renovating the kitchen of the house we rent from them. It should be finished in the next couple of weeks and what a blessing it will be! My daughter is finished with preschool for the summer, and so any extra energy I have has been going toward caring for my family and enjoying the warmer weather before it becomes too hot to be outside!

Tomorrow is a BIG day, though, and I sure could use some extra prayers. After 20 months of wading through the disability process and being denied twice, I will have my hearing in the morning. My attorney thinks I have a good chance of being granted disability since my pain affects my standing, walking, and most importantly sitting ability.  But I know that anything can happen and it's really in the hands of the judge who will be hearing my case. If I am not given disability benefits then there would not be any reason for me to reapply unless my condition worsens. Please pray that I will explain my pain/limitations well , that the judge will be empathetic, and that he will see how my pain prohibits me from working. Pray that we will trust God no matter what the decision is. (We will not get a response for 30-60 days).

I have continued to see myofascial release therapist for the last 3 months, but I am not seeing any real improvement. The biggest issue is that this therapist is not trained to work on the pelvic floor and without that my sitting ability is not likely to improve. I am not sure what to do honestly. I have tried almost every therapist in this area that I can find who has any experience at all in the pelvic floor. I continue to try to research and call other therapists in this area, but it seems I am out of options. It's hard to understand why God would put us in an area without knowledgeable health care providers to help me, but for some reason He has not allowed us to leave this area yet. It is extremely frustrating and discouraging and were it not for Christ I would despair (and rightfully so!). Please pray against the temptation to worry and despair. Pray that God in His timing would provide a way for me to manage my pain better or preferably that He would take it away!

I am 9 days shy of being 5 months post-op from hip surgery for FAI/labral tear. The last few weeks I have been dealing with a lot of operative side knee pain again. I have had problems with this knee on/off for several years, but especially after surgery. My PT (that I travel 2.5 hours to see every 4-6 weeks) thinks the knee pain is due to my quad and glute weakness which is causing my femur to rotate internally when walking. Also my IT band is extremely tight and overworked due to extreme weakness in my adductors/vastus medialis. Unfortunately I struggle to do very much strengthening because it increases my pelvic floor burning. Lately my knee pain has made walking and even standing painful. I've been using KT tape (which helps some), anti-inflammatories, foam rolling, warm Epsom salt baths/heat, self-massage/trigger point release, but I am still struggling. I am trying to get my insurance to cover a SERF strap, which my PT thinks may help with the hip internally rotating, but please pray that when I travel to see my therapist this week she will have some other tips to help me get this knee pain under control. Also pray that she will help me find some exercises in general that I can tolerate better in order to regain some strength.

Thank you for praying for our out of town trip back in April. It was not easy, but God gave great grace and allowed us a good visit with my husband's family. Also thank you for praying for my husband's job interview. Sadly, we are still waiting to hear whether my husband will get this promotion or not (he should finally hear this week, Lord willing), but we did learn that even if he gets this promotion the pay will only increase minimally. So he will actually work more hours for less money overall, due to changing from an hourly to a salaried position. This is of course disappointing, but we know God is in control of this as well and He knows what we need. Pray we would trust God to provide and that He would provide either through disability or a different job for my husband.

It seems the Lord has been and is continuing to teach us patience. I know I am far too often weary of having to wait, and I complain and worry about the trials we face. But I pray God will help us hold firm to Him till the end and that we would fix our eyes on Him as we wait.

3 Month Hip Surgery Update

I'm 3 months post-op from my left FAI/labral hip tear repair. I wish I had good news to report - that overall my pain levels are lower and I am functioning better - but I don't. While this last month I have become a little more mobile (than I was at 2 months) and I am able to lie on my surgical side better and getting down on the floor/squatting is a little easier. I am not noticeably better overall. I am still struggling with my range of motion (which didn't really improve from my 1 month to 2 month post-op appointment) and internal/external rotation (especially external).

My hip pain was really a minimal part of my overall pain, and I knew that going into the surgery. Yet others with similar pain and history to mine had received relief of symptoms so I was hopeful I too would gain a better quality of life.

It is still possible I could see overall relief from this surgery as the normal healing time is up to one year, but it is discouraging that I am still dealing with so much muscle dysfunction (tightness, pain, and compensation) at 3 months out. No amount of heat, massage, or therapy seems to help. My worst areas are my abdomen (my psoas and rectus abdominus muscles), my low back (quadratus lumborum muscle), and my thoracic area gets very "locked up" feeling making even standing difficult at times. My surgeon tighted the hip joint capsule during surgery due to my ligament laxity and sometimes I wonder if my increased abdominal/low back pain could be due to that.

The last 6 weeks I have been trying a new more alternative therapy locally called myofascial release. It is a gentle "hands-on" therapy which involves long stretches and releases. I do feel better after each session, but it is very short lived (30 minutes to 4 hours of a little relief) and it doesn't really address my sitting pain. So I am not sure how long to continue this therapy.

It's disappointing that I can't seem to find a way to better manage my pain and improve my quality of life, but I press on knowing I have much to live and be grateful for. Though God's ways are not my ways and I struggle to understand "why", I hold to what I know is true: God is good and He is sovereign. This is all any of us know, and it's really all we need.

I continue to appreciate your prayers:

• Today we are leaving to visit out of town family and on the way back we will see my surgeon/therapists for a follow-up. Traveling is extremely difficult for me, but God in His providence provided a mini-van for us this past December after my husband was in a car wreck that was not his fault. This allows me to lie down while traveling and my daughter can come with us since she can sit in her car seat! Please pray my pain levels will be tolerable during our time away and that my surgeon/therapists will have some insight to help me work through some of the abdominal pain especially as it really makes me feel nauseated at times and nothing seems to help relieve it.

• My husband has interviewed for a promotion with his company. If he does not get this promotion he will get demoted and his pay will decrease. Please pray that God will grant him this promotion as we could not make it financially on any less money (we already have to dip into our savings each year).

• Next month I have my disability case hearing. I have already been denied twice and this time I will appear before a judge with an attorney to plead my case. Please pray that the judge will have compassion and empathy for my situation and believe that I am truly disabled and in pain.

• Continue to pray that God would help me find a way to manage my pain (or even better that He would heal me!). Also pray that He would give us wisdom to know what to do about treatment options/therapies.

• Please pray that we would persevere and not lose heart. Pray that we would seek God even though it is discouraging, and it sometimes feels like He is not at work.

Thank you for continuing to journey with me. I am truly grateful for the prayers and support.

2 Month Post-Op Hip Surgery

I'm now a little over 2 months post-op left hip scope for FAI/labral tear. This last month has gone by quickly. I'm now off all assistive walking devices (since around week 5.5 weeks) and doing most of my "normal" limited activities. I still struggle with squatting/getting down on the floor, walking more than a couple of blocks, standing for long periods, laying on my operative side (though this is slowly improving), and internal/external hip rotation. There are still occasional movements that cause me to gasp in pain, but hopefully with time and therapy these will get better.

Last week I finished an intense week of therapy out of town again. I haven't felt as much improvement as I usually do and I think that is likely due to the fact that I overloaded myself while I was there - seeing two doctors, driving back and forth almost 30 minutes to therapy (which is extremely hard for me) with sometimes multiple therapy sessions in a day - and my therapy was a little more aggressive. Sadly, I continue to have all my pre-op pain in addition to some new pain brought on from the surgery. I am trying to be patient and am praying that with time some of my old pain, especially the sitting pain, will diminish, but it seems like most of the people I have known who have had relief of their pelvic floor pain with hip surgery saw at least some improvement in pain within the first couple of months.

This past month my hip rehab has been much slower. I had a stomach virus which knocked me out for over a week and I continue to struggle to do therapy much outside of the pool without an increase in pain. I continue to have A LOT of muscle dysfunction and pain. My abdomen literally has knots in the muscles and I often feel crampy. I've tried self massage, warm baths, professional massage/manual therapy, moist heat, TENS, and stretches but nothing seems to help much. The more I am upright trying to walk around and do light work around the house and sit for short periods the more my thoracic area and lower lumbar area on the operative side screams at me. It's most likely my psoas and quadratus lumborum that are extremely spasmed from all my glute and hip weakness and sacroiliac joint instability. It literally feels like a stabbing pain around T12 (right about where my ribcage ends). I had these pains pre-op, but they are definitely intensified post-op and it is frustrating because I had them better managed I feel like back before Christmas. The hip PT feels like most of my pain is muscle related and that I have better movement through my hip, but that my muscle tightness and pain are limiting me.

It's discouraging and not what I hoped for, but I'm thankful for what I can do and am continuing to press on by the grace of God.

Praises:

• I no longer have any more tingling in my foot/leg than I did pre-op, though I do continue to deal with symptoms of central nervous system sensitization, a pain syndrome causing hypersensitivity and allodynia (painful responses from non-painful stimuli).

• My knee pain is much more tolerable. I still have a lot of weakness, but my knee is not subluxing or causing me to scream out in pain when I kneel down.

• The areas of numbness on my thigh seem to be getting smaller though I do have some scar tissue around my surgical sites which are creating pain when trying to lay on my left side.

Prayer Requests:

• I have found a local therapist which does myofascial release, a more alternative therapy. Since I have not had any real success with my other local options please pray this therapy might help me work through some of my post-op muscle pain and help me manage my overall pain better/improve my quality of life.

• If it is not God's will for me to get better,  please pray that I would not continue to progressively get worse. Ultimately I want to get stronger, of course, but it would be wonderful to just get to a place where I can function decently (care for my family and attend occasional social functions and church) under my limitations and I am not constantly flaring.

•  Pray that I would be able to get this muscle pain under better control so I can tolerate home therapy better.

• Continue to pray that God would provide for our needs - spiritually, physically, and financially - and that we will trust Him no matter the answer to our prayers.

Thank you for your continued prayers and support.

One Month Post Op Update

Well my weekly post-op updates didn't quite go as planned, sorry about that! Thank you to those who have been praying (prayer requests at the end of this post).

Tomorrow I will be 5 weeks post-op. Recovery is slow as I knew it would be, and there have been lots of ups and downs. I just got back from 4 days (5 sessions) with my wonderful pelvic floor PT and hip PT out of town. I feel so much better when seeing them, but it is very disheartening to return home knowing that I will go another 4 weeks before I get the PT I need. I just feel like if I had access to consistent good therapy that I would be able to manage my pain much better, but apparently that is not God's plan for us right now. 

Here's a little recap of the last few weeks:

Day 16-21 post op: I experienced a big flare up in my pelvic floor pain/burning. I couldn't even sit for 5 minutes without being on fire! I feel like it was due to being too aggressive with my glute sets and bridges while trying to strengthen my hip. I backed off these exercises for a while and it finally calmed down some thankfully. This is frustrating though because I need to strengthen, but I know I am just going to have to be patient. At three weeks post op I went to see my hip PT out of town. I saw a major improvement in post-op hip related pain thanks to lots of manual therapy. My quad was really angry prior to seeing the PT. She didn't add any new exercises since I was still struggling with an increase in pelvic floor pain, and encouraged me to get in the warm water pool as much as possible.

Week 3-4 post op: I got a massage (right now I am trying to do bi-weekly massages) - this helps with all my overall muscle pain due to the dysfunction and compensation. I also went to the warm water pool 4 times this week without any real flare-up in pain. I tolerated my hip exercises much better in the water than I did on dry land.

Week 4-5 post op: I began to start taking steps around the house without my crutches or with just one crutch. My hip PT didn't really want me to use only one crutch due to fear of worsening my muscle compensation so she suggested I use a cane. I don't feel like the cane really helps that much so unless I am walking outside my house, or unless it is the end of the day, when I often begin to feel like I can't stand up on my own anymore, I've just been walking without an assistive device. I'm glad to be walking some again, but I am experiencing a good bit of muscle pain. A lot the muscles that support my pelvis are so tight they feel like bricks. The muscles that are the worst are my psoas, rectus abdominus, quadratus lumborum, and the erector spinae (which are more superficial - to the surface of the back - than the quadratus lumborum and psoas).

Image source



 

Image Source

I've had problems with these muscles for a long time now, but my psoas and rectus abdominus got so bad this past week that it felt difficult to stand up straight or even eat as my abdomen was so swollen/irritated. I'm not sure what exactly caused this, but I think that maybe I was overly aggressive trying to tighten my transverse abdominus (TA), to support my core, while trying to do my pool exercises.  Since I am very weak, due to years of dysfunction and worsened due to recent surgery, it is easy to recruit other muscles . My pelvic floor PT said that you only need to contract the TA to about 30% of maximum contraction. This is much easier for me to do lying down than standing up in a pool though!

I've also been having some significant knee pain. Getting down on the ground to play with my daughter is still difficult and the knee is also painful when walking. My hip PT gave me a SERF strap to borrow to see if it helps with the knee pain. So far it has I think, but I hope the knee pain will lessen once I build back some quad strength.


Praises:

• My circulation issues seem to be getting better. I still have some tingling in my foot and after standing for a long time occasionally my surgical side foot is more red than the other. I saw the surgeon for my 1  month follow-up and he and the PT are hopeful that with time and full-weightbearing this with go away. Although they have bought mentioned Complex Regional Pain Sydrome as a possibility. Continue to pray that this will resolve at least to my pre-op normal.

• My bandiad rash finally went away!!

• Praise God I have access to a warm water pool (for a price we can afford!) and that it provides reduced pain levels, even if for only a few minutes.

• Praise God I am regaining the ability to walk around the house more. Please pray that this continues and that the knee pain will go away as I gain more strength. 

Prayer Requests:

• That I will be able to get the muscular tightness and pain under control so I can continue to strengthen. The main goal of this surgery was to regain strength, please pray that in time I will be able to do this.

• Pray that God will provide a way for us to get good physical therapy more consistently. The only way we see this happening is if we move. My husband continues to look for jobs in larger cities where I would have access to the specific medical care I need. If it is not God's will for us to move, please pray that He will help me learn how to manage my pain with the resources I have locally.

• I continue to have some numbness on my upper and outer thigh either from surgery or from the nerve blocks I received in recovery. These areas are very sensitive if I rub up against them or try to lay on my left side. Pray this will decrease in time (sooner rather than later!).

• Pray that we would rejoice always that I have a living hope and a future in Jesus! This is a daily battle as chronic pain wages heavily on us.

I was reading in a devotional Jesus Calling by Sarah Young that a sweet new friend with chronic pain gave me. (I do not necessarily advocate for reading this devotional as I feel the author's take on "hearing from God" and writing in the first person as Jesus is a bit presumptuous, but as with any devotional book one must take the author's writing as just that - the author's writing. So if you read "Jesus Calling" take Mrs. Young's writings as a grain of salt and be sure the majority of your spiritual food is coming from God's true word - The Bible.) Today's reading was so very appropriate as I am tempted to worry about the future and how I will ever get my crazy tight muscles under control (and especially without good PT!). Here is a portion of today's reading:

I am your Strength and Shield. I plan out each day and have it ready for you, long before you arise from bed. I also provide the strength you need each step of the way. Instead of assessing your energy level and wondering about what's on the road ahead, concentrate on staying in touch with Me.... Refuse to waste energy worrying, and you will have strength to spare. (Psalm 28:7, Matthew 6:34, Psalm 56:3-4) 

2 Week Post Op FAI/Labral Repair Update

I'm finally back after my left hip arthroscopy to correct my femoroacetabular impingement (FAI) and labral tear. (For pictures and a more thorough explanation of labral hip tears/FAI click here)  I have had some bad days, but in some ways I am doing better than I thought I might be at this point.

My surgery was delayed 2 hours and I was the last case of the night at the outpatient surgery center. When I met with my surgeon pre op I was under the impression that I would have the opportunity to pick from a few different several different nerve blocks pre op to help with post surgical pain. But when the anesthesiologist came in to talk to me he said they only do two types of blocks - femoral nerve block and a lateral femoral cutaneous nerve (LFCN) block in recovery if post op pain is uncontrolled. He warned me that these blocks would not help with "bone" pain - pain coming from inside the hip joint only with surrounding soft tissue pain.

My recovery experience was horrible. I don't remember a lot because apparently my pain was uncontrolled and they had to give me a lot of medication. The anesthesiologist also gave me  a femoral and LFCN block, but I remember feeling a lot of pain like I had never felt before and since the block didn't help much other than to numb my leg making walking/moving difficult, i assume my pain was coming from inside the joint. My nurse was not the nicest. I was extremely hoarse from the intubation tube (this took a good week to get better) and she just sat at the end of my bed and said "huh" over and over. They didn't let my husband see me for a long time and I remember at one point waking up and seeing another patient and their spouse looking at me and the man said, "you're in a lot of pain, aren't you?" Yes, I was. When they finally did let my husband back he told the nurse I was in a lot of pain (I guess I told him I was or he saw it in my face - thankfully I don't remember this experience much) and the nurse said, "well I've already given her enough medicine to knock out a cow!" This nurse obviously wanted to get out of there. I don't blame her. It was 9pm on a Friday night. I never had gone to the bathroom post op so she rushed me into the bathroom and gave me about two minutes. When I hadn't gone yet she said, "well if you haven't gone in 6 hours just call your doctor." I told my husband to ask for her name. Needless  to say I have reported my experience. My level of consciousness and pain level was too poor to be discharged. I should have been admitted to the hospital overnight.

Thankfully we only had a 15 minute drive to my grandmother's house. My husband was able to use her wheelchair to get me into the house and I slept on her couch for the next two nights. The first night I had to urinate about every 1-2 hours as I had such bad urinary retention from the anesthesia I guess. I was itching horribly, and  I would shake like crazy every time I had to get up to go to the bedside commode (it's a good thing I was staying at my grandmother's where I had access to these things!). Benedryl and pain meds helped me get through the night. We also rented a ice system machine called a "Game Ready" (more about this later) that cycled on/off every 30 minutes. My poor husband "slept" in the recliner between my bathroom calls and filling up the Game ready.

We met with the doctor and his nurse the next morning (he came in on Saturday to see his out of town patients). I told them about my experience and that my pain still was not controlled well. They gave me a few new prescriptions, took off my bandage and the surgeon explained what went on during the surgery.

I had an anterior superior labral tear which was repaired with two anchors as well as some posterior labral fraying that was smoothed down.

left anterior labral tear

 

labral tear repaired

The most common cause of a labral tear is femoroacetabular impingement. I had a small CAM deformity on at the head/neck junction of the femur which was shaved down. One of my biggest pre-op concerns was finding out why I had a labral tear since groin/hip pain was only one of my many symptoms. When I asked the surgeon this pre-op he felt like it was likely due to the "way my hips are made" (i.e. FAI). I was concerned, however, after reading this article that the cause might be ligament laxity (since some PTs have felt I have some widespread joint laxity) or due to biomechanical issues and muscle imbalances including lower crossed syndrome (which I have). Lower crossed syndrome often can cause an anterior tilt of the pelvis (which I have) causing increased weight bearing on the anterior labrum and subsequent tearing. When I saw the surgeon the day after my surgery I asked him if he thought my CAM was enough to have caused my labral tears and he said, "no". I want to talk to him more about this at my one month follow up because I am concerned that if the cause of the labral tear is not fixed then there is a greater likelihood of re-tearing. I sure hope this surgery wasn't a waste. Due to my sacroiliac joint dysfunction and pelvic floor pain correcting the lower crossed syndrome has become almost impossible, though my goal with this surgery was to hopefully be able to regain muscle strength in my left glute and leg. Only time will tell if this is possible and if the surgery was beneficial.

 left CAM deformity

CAM deformity shaved

In addition to the labral repair and CAM shaving the surgeon also found that my ligament terres was enlarged. He was able to decompress this with heat and there was also a good bit of inflammation in the pulvinar tissue which lines the acetabulum. The fact that my ligament was so irritated and enlarged concerns me again that the cause of my labral tear might be more biomechanical or that I could have an underlying connective tissue disorder, which is something I have thought for some time now and may be something I investigate further in the future. In order to perform the surgery the joint capsule has to be opened up. Sometimes they leave the capsule "open" after arthroscopic surgery, but thankfully my surgeon closed the joint capsule since I have some ligament laxity .

Enlarged ligament terres

Inflammation of pulvinar tissue of the acetabulum

 The first three or four days of my recovery were pretty rough. We unfortunately chose to travel home on post-op day 2 and my anesthesia was wearing off so the 2.5 hour trip home was difficult. The high doses of narcotics made me extremely emotional/panicky/depressed and they didn't help the pain that much. Ironically once I stopped taking the narcotics and stopped icing I actually felt better. Most people really like the Game Ready icing system, but for me the ice seemed to make my circulation and pain worse (more on this below). A low dose muscle relaxant at night has actually been more beneficial for me and I am taking higher dose anti-inflammatories as prescribed for the first 3 weeks post op. I will be on crutches with 50% weight bearing for at least the first 4 weeks and I cannot flex my leg past 90 degrees or externally rotate my leg at the hip.

At 2 weeks the surgical pain is tolerable unless I am up too long or doing PT exercises.  I drove today for the first time and am able to care for my daughter for very short periods of time. The biggest struggle is that I cannot carry anything with my crutches, bend down, or even reheat food for myself. I had 5 small incisions and got my stitches out on day 10.  Everything seems to be healing nicely except I did develop an allergic reaction it seems to the band aids I was using as I have sensitive skin. I am hoping this goes away soon and then I look forward to hopefully getting in the warm water pool to do some therapy exercises. This is one place where I usually experience less pain. I got a massage on day 10 and tolerated it well, though my therapist was more gentle than normal and stayed away from my left hip. The nerve blocks I had post op took about 7-10 days to resolve. I still have a little big of abnormal sensation on my upper thigh, but nothing I couldn't live with if it doesn't fully resolve. The first three days post op I couldn't move my leg and I felt like I would never walk again, but thankfully my range of motion is improving daily.

My hip at 2 weeks post op with band aid rash

Unfortunately my chronic pelvic, sacral, low back, pain and leg burning has remained the same. I am very thankful I am not any worse though. My biggest concern is that my operative leg has appeared darker in color at times than my right leg. My feet have burned ever since June 2010, but I have noticed that they are more flared up and my left foot sometimes feels like it is asleep/tingling. The doctor's nurse said this could be due to the fact that I am not bearing enough weight or it could be complex regional pain syndrome. Due to my previous "diagnosis" of central sensitization I have been concerned about CRPS for some time. But my pain in my operative leg is not grossly abnormal so I am praying that with time and therapy my leg/feet circulation and burning will get better.

It takes professional athletes 4-6 months to recovery from this surgery and return to their pre-surgery athletic level, so due to my complex and chronic pain I know to expect that long and up to a year (according to my surgeon) to see full healing. Already after only laying around for 2 weeks I notice more muscle atrophy so it is going to take a lot of work to rebuild my strength. Patience is key, as I knew it would be, and I am still very early in my recovery.

Praises:

• I am able to use normal crutches without too much difficulty or increase in any previous chest/underarm pain that I've had in the past!
• My pudendal neuralgia/sacral pain doesn't seem to have been worsened because of the surgery (i.e. I can still sit about the same amount of time).
• My mother did well with her surgery and seems to be healing nicely. Our extended family and church has been a great support to us.
• My GI issues have been much more tolerable! Please pray this continues.

Prayer Requests:

• That my circulation will return to my normal pre-surgery level soon and that the burning in my feet and legs will lessen.
• Pray that my rash goes away soon so I will be able to do aquatherapy
• Patience and peace - that I will trust God is in control and have joy in Him even when the days are difficult
• That I will regain the ability to walk and stand without difficulty (this is especially important since I am unable to sit for long periods of time).
• That some of my chronic pain might eventually resolve with the appropriate therapy and pray that I will be able to get good quality PT as often as possible (I have to travel for this which is difficult for our whole family).
• Continue to pray that God would one day allow my husband to get a job in a bigger city where I could have better access to pain management and therapy treatments.
• Continue to pray for strength for my husband as he cares for us and keeps the home running. He is such a gift from God!

Whew! Sorry for the overdue update. Hope to get back to more regular blogging in the days to come. Thanks for praying and caring.

An Overdo Update: Upcoming Hip Surgery!

I realize I've been a little quiet the last few weeks, but most of my better days have been spent preparing for Christmas, enjoying time with my family, and preparing for upcoming hip surgery. After a lot of thought, research, and prayer my husband and I feel it is wisest to pursue arthroscopic hip surgery to correct a left labral hip tear and femoroacetabular impingement. (I have bilateral hip pathology, but both of my PTs, massage therapist, and I agree it is wiser to do my left side first as I have the most dysfunction/atrophy on that side).

It almost seems surreal that in 2 days I will start the long recovery process (up to one year total time). I think anytime one undergoes elective surgery there are always doubts about whether it is the right decision, but especially when you have tried multiple treatments (and failed) and when you have a very complex case like I have. Sure, I can't do what a normal 30 year old can do by any means, but I am able to do some  things, so do I want to risk getting worse? Maybe this is just God's will for me and I need to accept my disabilities and try to manage the pain as best I can? What if my hips aren't really causing as much of my pain as I think/hope? And the list goes on and on.

I have always been an indecisive person, but at the same time growing up I was always a risk taker (until I had what felt like a near death experience white water rafting the Nile River!). The truth is I don't know what the outcome of surgery will be - no one ever does. But we have prayed for God to give us wisdom and at this time we feel this surgery is a risk worth taking. Even if I do not have any pain relief overall, if I am able to preserve my hips and prevent the need for a total hip replacement in the future (arthritis is often the end result for people with my condition, especially at such a young age, and it is hereditary as my father has this same condition - though he did not have it corrected and is currently biding his time before a replacement will be necessary ) then it would be worth it.

I really have accepted the fact that I will most likely have chronic pain, but I am still praying that God would give me a better quality of life/management of my pain. Even for my pain levels to stabilize would be wonderful because I seem to continue to get more debilitated year by year as I lose more muscle and my pain becomes more widespread.

We definitely need your prayers as we begin this new journey. Please pray:

• For post-op pain control. This is my number one concern as I'm not sure how much of my pain is coming from the central nervous system sensitization that I have spoken of before. Unfortunately the infusions I had in November did not provide any relief and only increased my pain. I have considered traveling to see a doctor who specializes in this type of infusion, but from my research it doesn't seem like these drugs help people such as myself with biomechanical causes of pain that have not first been corrected (and I really believe my pelvic pain ultimately stemmed from a biomechanical cause - most likely bad hips or sacroiliac joint dysfunction or both). I am very concerned about the inability to get up and move around much at first as lying in bed often seems to increase my pain and I cannot lie comfortably on my back - this means that for several weeks the only position to rest may be on my right side. Pray that the anesthesiologist & surgeon will have wisdom to know how to best control my pain during and after surgery.

• That I will be able to get the PT post-op that I need. My experienced PTs are 2.5 hrs away and I will only be able to see them occasionally. Pray that my local PT will be able to help me and that in combination with warm water therapy/massage/home exercises will suffice and help me get to a better quality of life.

• My mom has to have an unexpected surgery one week after my surgery. She will have restrictions for several weeks so caring for my 3 year old daughter will be a little tricky as I will be on crutches for 2 months or so and it will be probably a good 4-6 months before I start to feel some relief. We have a lot of extended family help and church support, but pray for my daughter (and husband/father) during the first couple of months as life will be pretty tough for us all. Pray for my mother's surgery and recovery as well.

• Pray that I will not get worse from this surgery and that there will be no complications. Pray that I will be patient as this recovery takes a long time (especially for someone with very complex chronic pain like myself) and that I will fight against my ever-present temptation to be negative.

• Continue to pray for my GI issues. I had an upper endoscopy 3 weeks ago that was normal (showing mild/moderate gastritis). I've continued medication to help with reflux and have been trying to modify my diet some. My symptoms are a little better than they were 2 months ago, but I am still struggling with burping, especially with drinking. My GI doctor thinks this may be more of a neuromuscular esophageal spasm, but unfortunately there are not many treatment options for that. I do wonder if it is just another part of the central sensitization, but I pray it is not. Please pray that I will be able to drink enough post-op to help with healing and that my GI issues might go away on their own as quickly as they came.

• Pray that God will keep me healthy going into the surgery as I am pretty tired from trying to prepare for and celebrate Christmas and get things ready around my home for surgery. Pray that God will calm my fears as well.

• Pray for peace and that no matter the what happens we will continue to trust in God - not for what He can do for us, but in who He is! Pray we would seek Him even more in the coming days and weeks.

I will try to update weekly if I can for at least the first couple of months post-op. Please let me know how I can be praying for you. I will have lots of time on my hands while recovering and the more I can take my thoughts and prayers off myself the better! Feel free to email me your requests at purposeofpain (at) gmail (dot) com.

Thank you for faithfully reading my blog and for praying. May we take hope in our Savior who was born on Christmas Day knowing that He holds our future!

Hope

When dealing with a chronic illness, hope is extremely important. I frequent several online forums and support groups and people are constantly encouraging each other to not give up hope. As Larry, a fellow pelvic pain sufferer said, "Hope -- just never gave up hope. I believe hope is just about everything."

Some days it seems my overall pain level can vary based on my outlook and whether or not I feel hopeful (and of course vice versa - if my pain levels are low I obviously feel more hopeful). When I'm going to see a new doctor or even have a massage appointment that I know is not going to "fix" me , I often am encouraged again to have hope because I am doing something and not just laying around in my pajamas another day trying to make the best of it all.

Almost 2 weeks ago I had my infusions. I'll spare you all the details, but let's just say it was an interesting experience. Unfortuantely my doctor had only tried this infusion on one other patient and there was no real protocol in place. The amount of medications they gave me were no where near the amount needed to have any therapeutic effect according to all the research I've read, and the whole experience was a little traumatic. My doctor said not to come back a third day if I didn't have any relief -which I didn't - and I knew there was no point as one more day of such a low dosage wasn't going to have any more effect. I actually left after the 2nd day with more pain, I assume due to the trauma of the whole experience. I am still experiencing more burning in my legs and feet and unfortuantely nothing really gives me any relief from this horrible symptom. I wasn't expecting these infusions to cure me, but I was hopeful to get at least a little relief . I sure didn't expect to have an increase in pain!

To be honest, I've been pretty despondent and discouraged. WHAT is God doing?! WHY can't I find even a little relief? I'm so, so tired of trying to figure out what is wrong with me and how to treat my crazy pain that no one seems to understand (other than all my pelvic pain buddies I've met online - love you guys!). Throw in all my current GI issues and it almost feels like more than I can bear.

I have just tried so many treatments over the years. I've researched, I've prayed, I've tried to seek God's wisdom and I only seem to get worse. I honestly do not know of other treatments I can try apart from flying and spending lots of money to see a specialist who deals with CRPS (chronic regional pain syndrome - which some of my symptoms seem to match) and try more infusions like this or having arthrosopic hip surgery for my labral tear which may or may not fix any of my pain and could make the pain worse if I am truly dealing with CRPS. So is this it? I'm 30 years old. Should I just accept it and pray I can somehow manage the pain for the rest of my life?

I know God is in control and that my hope should be in Him, but it is very hard to feel hopeful when I cannot sit for more than 20-30 minutes (in pain) on a good day and when I can't fall asleep because it feels like my legs are on fire and I can't even stand for them to touch the pillow that is inbetween my legs - the one position in which I used to find some relief. Is this what I have to look forward to - a continual progression of agony?

Then I was convicted the other day - I really have just as much hope when I am lying in bed with worsening pain, uncomfortable burping after each drink of water, and no prospect of future treatment as I do when I am preparring to try a new treatment to rid me of my physical ailments or visting with a doctor or having a less painful day because my hope is in Christ.

I can relate to some of the anguish the writer of Lamentations expresses in chapter 3:

surely against me he [God] turns his hand again and again the whole day long. He has made my flesh and my skin waste away; he has broken my bones; he has besieged and enveloped me with bitterness and tribulation; (v. 3-5)

He has walled me about so that I cannot escape; he has made my chains heavy; though I call and cry for help, he shuts out my prayer;  (v. 7-8)

 my soul is bereft of peace; I have forgotten what happiness is; so I say, "My endurance has perished; so has my hope from the LORD."  (v. 17-18)
 

But then the writer remembers:

But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The LORD is my portion," says my soul, "therefore I will hope in him." The LORD is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the LORD. (Lamentations 3:21-26)
 

As more and more things are made difficult or "taken away" I realize where my hope truly lies. (I never knew how much hope I found in the ability to properly digest until the simple unconcious task of eating and drinking became uncomfortable.) Is it wrong to hope that I can one day sit and eat dinner with my family without pain? No. But if my hope lies only in a having a better body in this lifetime and if I seek that more than I seek God, then I will only be disappointed.  I may never receieve any healing or improvement in my quality of life while I live on this Earth, but I am assured a new body one day because my salvation has been purchased through the death and resurrection of Jesus Christ and He is my hope. I may not feel hopeful (and many days I do not), but these truths I must call to mind: "The Lord is my portion, therefore I will hope in him". And  hope in Christ is everything I need.

Green Light With Infusions Tomorrow!

Just wanted to update about my previous post. As of now, I will be proceeding with my infusions as scheduled tomorrow, Tuesday, and Wednesday morning. My GI issues are still there though a tad better I think (maybe) since doubling up on my priolsec (per a GI nurse practitioner's advice), modifying my diet, and taking antacids - though I still feel like this is atypical, if it is reflux. If another week on the prilosec doesn't settle things down I'll be trying to get a referral to a GI doc - yet another specialist to add to my list, ugh!  After speaking with the GI nurse practitioner and my pain doctor and getting the "all clear" I decided to proceed with the infusions.

• Please pray that the infusions will not cause nausea/vomiting or hallucinations - the two biggest side effects of the medications.
• Pray that I will tolerate the medications ok so I can get the full 3 days worth and ultimately that I will get even just a little pain relief!
• Pray that this infusion will help us gain wisdom as we seek to understand how much of my pain is being driven by the central nervous system so we can better know how to proceed with other diagnoses like my labral hip tears.
• Pray that the insurance company will cover the cost of the infusions - we still are not sure what they will pay as one of the medications is often considered "experimental".

Thanks for praying. I really don't know what to expect over the next few days, but I know the One who holds the future, and I rest knowing my times are in His hands.

Prayers Please!

Two and a half weeks ago I had what seemed to be a stomach virus. It actually reminded me a little of the frequent stomach issues I had while living in Africa as it seemed to drag on for a while. I am finally feeling better from that, but last week I developed some upper GI issues that I have never had before - constant burping when drinking even water, feeling like something is stuck in my throat, and a little difficulty/irritation when swallowing. I have no idea where this came from! I began taking Prilosec just in case it is reflux, but I am not overweight and I don't have heartburn or a reflux feeling just a constant need to burp in order to get liquids/food/medicines down. Honestly, this has been anxiety producing (it doesn't help that my husband has been working CRAZY amounts of overtime -though we are extremely grateful for the extra money!). I cannot get into my family doctor this week and Monday is when I am supposed to start the drug infusions that will hopefully help with the central nervous system sensitization pain. I have been waiting for the infusions for 3 months and really need some relief from the burning, especially in my legs. I am concerned though that the infusions could cause some nausea and vomiting (side effects of the medications) and that might irritate my esophagus even more! This is very frustrating and like everything else completely out of my control.

When I had the MRI of my right hip 2 weeks ago a labral tear was found in that hip as well. I had a good visit with the PT and nurse practitioner and will go back in 2 weeks to see the hip surgeon and hopefully get more of my questions answered. My hope is that these drug infusions will help relieve/manage some of my pain (especially the burning/hypersensitivity), and then I might pursue intervention on my hip as this seems to make the most sense for me at this point. My right hip is actually more painful and unstable on a day to day basis than my left, but my SI joint pain and predominant pelvic floor pain is on my left side so perhaps I don't notice the hip pain there as much. Both my pelvic floor PT and the hip PT feel it would be wisest if I pursue arthroscopic hip surgery to have the left done first because I am already atrophied and weak and have more overall pain on that side.

The last few days have been especially hard. I'm discouraged and frustrated and just sick and tired of being sick and tired! I keep thinking surely God is going to give us a "break through" one of these days, but what if He doesn't? I read this quote Saturday which capturs how I often feel:

“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” CS Lewis

1. Please pray that these upper GI issues would go away - that God would heal me of this symptom. It just seems like the pain never stops spreading and I feel like it's more than I can bear right now! If it's not God's will for this to go away, pray that doctors will be able to figure out what is wrong and help me find relief soon.

2. Pray for wisdom to know what to do about the drug infusions next week.

3. Pray that if I do the infusions that they will help and that insurance will pay for it - we still haven't heard for sure about that! Pray also that the infusions will not cause any side effects (common ones being nausea/vomitting and hallucinations).

4. Pray for wisdom as we meet with the hip surgeon November 13th and try to decide what is best for me. Please pray that God will not allow me to do the surgery (or anything!) that would make me worse or not help the problem. I have already gone through so many painful and unnecessary procedures!

5. Most importantly pray for peace and that when I am afraid I will trust in God (Psalm 56:3-4). Pray also that we would not be anxious, but would constantly seek after God.

Thank you for standing in the gap with us!

New Cause of Pain after 4 Years: My Hips?

Sorry I've been a little more quiet lately. This past week I've been struggling with a stomach virus that's been lingering leaving nausea and stomach cramping as my companion. Actually, I'm not sure if it is related to the virus, or the fact that I've had to increase some medication due to burning in my legs which is relatively new. I've been struggling to use the computer for long periods to type because I have to lie down and I cannot stand the laptop on my legs. Lying down is the only way I usually get any relief of my pelvic pain, but now even that has become painful as it hurts when my legs touch each other while lying on my side and I cannot lie on my back (due to my sacral pain). It's been a discouraging week to say the least.

I've been struggling with burning in my groin and upper quadriceps off and on ever since I tried the intense alternative treatment back in May, but this burning throughout my legs and pain when lying down is pretty debilitating. It could be due to muscle tightness caused by compensation from all my pelvic dysfunction, but I feel like it's probably due to central sensitization (this is a link to a short video clip explaining what happens in central sensitization) unfortunately as pain medication doesn't even touch the pain. Next month I am going to try some drug infusions to hopefully help calm down my central nervous system and get the pain under better control.

Please pray that my insurance company will pay for these infusions. My doctor has submitted a letter of medical necessity and I am waiting to hear back from them. Please pray that the infusions will work to help manage my pain better and the side effects will be tolerable. If it does help, this is something I can do on a regular basis to manage my pain. Praise God I found a local pain doctor willing to try this!

Thankfully my doctor is willing to give us a "deal" (though still not cheap) so we feel like we need to go ahead and try the infusions as my pain is just becoming worse and worse. We will battle the insurance company after the infusions if we have to. I am concerned because the dosage this doctor is planning to give me is small and the infusions will only be for 3 days (2 hours each day) so this may not be enough to tell if the medications will help me. But it is the best option I have at this point without traveling across the country to a specialist who deals specifically with this type of pain syndrome.

Three weeks ago we visited a hip specialist and I had an MRI of my left hip (where most of my pelvic floor/sacral pain is). Interestingly they found some damage to my hip - a labral tear and ischiofemoral impingement. I was surprised to say the least, after 4 years of going to doctors and never finding anything concrete on scans. What does this mean? Was this the actual cause of my pain to begin with? I don't know, but it's possible. There is a study (read abstract on page 29 of 32) being done out of New York that suggests a correlation between labral hip tears and pelvic floor pain. However, my case is complicated due to the central sensitization and while arthroscopic surgery can be done to correct the labral tear it is possible that even with surgery my pain could become worse if my central nervous system is driving the pain. It's also important to know the cause of the labral tear, which mine seems to be congenital according to the specialist, but I also have a degree of hypermobility in my joints and this could also lead to a poor surgical outcome. I plan to look into this more in the coming months as well.

I did have a hip injection that relieved my hip pain (which is minimal honestly compared to everything else) for several hours. (I have wondered a little if the hip injection is what set off the burning in my legs, but the injection was only in one hip and my pain is bilateral and the burning didn't start until about 3 days after the injection - but then again anything is possible with central sensitization it seems!) I feel like it is possible that the hip damage has caused all the muscle dysfunction and nerve irritation/pudendal neuralgia in my pelvis and that if the hip was repaired and I had consistent good physical therapy (which is a problem where I live) then over time some of the other pelvic pain might resolve. Of course until I get some of the burning in my legs calmed down I do not know if I feel comfortable pursuing a surgery.

We are traveling this week to see the hip specialist again and I will be getting an MRI of my right hip (I actually have more true hip pain in my right hip) as the specialist thinks I have a labral tear in my right hip as well. I have a lot of questions to ask her and will see their PT as well as my pelvic floor PT. Pray that God will give us wisdom as we seek answers to these questions.

We continue to need prayer that our hope would be in God, especially  for me in these hard days, and that I would call out to Him for grace to sustain me in my physical weakness. And most importantly that we would truly trust Him.

And of course we covet your prayers for healing and if not healing then better days and a better understanding of what is causing my pain and the ability to get treatment to help me.

Recently a Facebook "fan" recommended a sermon to me by Pastor Timothy Keller entitled "Questions of Suffering" that is very convicting. He talks about the "Why?" question of suffering saying that we must:

• Avoid the pat answers of "why do we suffer"
• Embrace living without an answer to "why am I suffering"
• Anticipate the final answer

Listen to it here and be encouraged!

A Little Update

A couple of weeks ago we found out my husband did not get the job we had hoped for. I think as time went on we knew that the likelihood of him actually getting the job was slim, but we were still disappointed and discouraged. The company decided to go with someone internal. We had heard it was very difficult to get your foot in the door with this company, but earlier this summer my husband applied for an entry level position with the same company and they basically told him he was over-qualified, so we are a little confused as to how one ever gets into this company!

I was a little angry with God to be honest. Does He not care that I'm in pain and have no access to treatment that helps even in the slightest? Of course I know that God loves us and is doing what is right and good, but we sure are tired of life being so hard. It seems at least for now, God wants us where we are though we really don't understand why. My husband continues to look for jobs in a couple of larger cities where I could have better access to treatment (especially pelvic physical therapy) and he has recently updated his ministry resume in hopes that maybe one day he could be in full-time Christian ministry as we so desire. Unfortunately ministry positions that pay well and have good benefits are not easy to find and no insurance company would insure me if we tried to buy our own policy (which is the custom in many small churches). So we are limited to churches with at least 10 paid staff members who carry a group insurance policy. Sure limits our options, especially since we would also have to move to an city that had good health care options for me. I do wonder at times why my husband ever went to seminary if all God planned for him was to work retail management for the rest of his life!

Over the last four weeks I've had some better days, especially after my last three-day physical therapy session with my PT who lives 2.5 hrs away. I am still far from normal, but I was able to get out a little more and function with a little less pain. After 2 weeks though I could tell the effects were wearing off and I really needed the PT again. Unfortunately, I can't drive myself since I can't sit more than 30 minutes so I'm limited to when my husband/family can take me. This is not a long term solution to my pain, but it is a pain management tool and for now that's all I have. It's so frustrating not to be able to get treatment as frequently as I need.

From a human perspective it feels like we are stuck - stuck in this town, stuck with my husband's current job, stuck with poor health care access, and stuck with lifelong chronic debilitating pain. But, "Who has understood the mind of the LORD, or instructed Him as his counselor?" (Isaiah 40:13, NIV) Surely not me. I have no idea what God has planned or how He is working, but I think I can trust the God to whom, "the nations are like a drop from a bucket, and are accounted as the dust on the scales." (v. 15)

So, as we work and wait, we'd sure appreciate your prayers.

• Thursday I will be seeing a hip specialist. My PT out-of-town has seen several patients who have pelvic floor pain and sacroiliac joint dysfunction who also have a more difficult to diagnose hip pathology such as labral hip tears/hip impingement. Thankfully, one of the best arthroscopic hip surgeons in the States for this type of hip pathology is located in the same city as my PT and my pelvic pain doctor! Honestly I don't expect them to find anything, but I think it is important to have every possible cause of pain ruled out before I just live with the pain. Please pray that they will order the correct tests needed and have eyes to see if there is any hip problem that might be contributing to my pain.

• If my hips are "clear" then I will likely proceed with some drug infusions that my pain doctor wants to try to help decrease my pain. It's unlikely that insurance will pay for these infusions as it would be an "off-label" usage, and I'm not sure that they will even help with my pain, as it would be an "off-label" us. Please pray that if we need to proceed with this that God will work out the logistics and give us wisdom to know if it is something we should pursue.

• My husband is going to finally (after 1.5 years) going to be put on an actual rotation at work where he shouldn't have to work 10 weekends in a row anymore. Unfortuantely this will make it difficult for him to have 3 days off in the middle of the week like we need when we travel to see my PT. Pray that if we continue to have to live here and travel for therapy that God will provide a way for me to get therapy that I need.

• Continue to pray that God would provide a better job for my husband in an area where I can get more consistent medical care that would decrease my pain if there is no other solution for my pain.

• Pray that we will continue to trust in our sovereign God and not lose heart. Pray for peace that surpasses understanding.

Thanks for praying as always. We serve a God who not only hears our prayers, but invites us to call out to Him!

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!