Life and Death

I'd like to start out on a positive note, and hopefully won't get overly negative. I am doing great today. My leg AND my left pelvic area are almost pain-free. I'm experiencing numbness in my left foot and a little stinging in my leg. The stinging has replaced the burning and stiffness since my injection for about 85% of the time. On the few occasions I've felt really bad, I've done my correction exercises and they worked.

Bottom line - the injection caused a lot of irritation in my pelvic area, sitting was really hard. That's fine now. Walking and standing are good most of the time, so the injection seemed to give me some relief, but not totally. I think what's going on is that I'm having slower progress because of lifestyle demands that require me to ignore some of the PT recommendations, and also because of additional exercises I've been given that stir up the pain. The medications help me overall so I can keep moving forward. My physical therapist has been checking my SI joint position and says it's much more stable than when she first started seeing me, but it's still not fully stable (she has to manually give me adjustments, but not as much).

Whew, sorry for that long explanation. Now to what I've had on my mind, life and death. I'll share snippets of conversations and other things that have led me to dwell on this serious topic, starting with this morning and moving back in time. This morning I talked with someone at church who rarely makes it to service because she has a very sick heart. She may need a transplant but is holding off for now. She's had a rough two years with losing her mom and another close relative. Last week I talked with friends from Philadelphia who've been in touch with our other friend who's husband lost his battle to cancer in January. She is grieving deeply. I also read a blog written by the husband of a friend in town who had early stage ovarian cancer last year; it was touching to read about his struggle in facing the possibility of losing her. After several months of chemo, she's been cancer free and has a good prognosis. On Caringbridge, the site we use for Ethan's illness, we've been following another family's very difficult journey; we first met them at Ronald McDonald House. The son has the same type leukemia as Ethan and was temporarily paralyzed from treatment, but after many months regained most of his mobility - he still is in therapy. Just recently, his grandma died after a brief serious illness. His mom has been having a lot of stomach trouble and is undergoing testing for that. In the past week, our church has been praying for a former church member in another state who had a tumor removed and was doing well, then thought the cancer came back but found out it was only a buildup of fluid. Finally, we've heard of one kindergartner's mom from Samantha's school who's now in hospice, and are following another classmate's mom's battle with cancer.

In the meantime, Ethan is doing great! He seems perfectly healthy with few side effects from continuing treatment. We were so excited a couple weeks ago to see him graduate with his class and receive a standing ovation for all God's done.

Life, death, why do some "win" and others "lose"? That is a question I can't tackle. All I can say about it is it's reality. And truth prevails over it all. Truth says that death has been conquered, everyone in the kingdom wins. There are no losers. But it sure feels that way to those who have to go on with their lives and adjust. God bless them, God protect them, God give them strength in the midst of their pain.

It's hard to think of a way to wrap this up. What I think I want to do is just remind myself that every day is a gift, even with its struggles which sometimes are many. Moments are important. They count for eternity. So many precious moments that blend together to make days, seasons, years. I want to remind myself not to miss out on what I've been given, to treasure people, to treasure creation, to treasure life, and above all to treasure my Lord.

Two week mark

Hi, it's been two weeks since I had my injection. I thought that if it worked I'd be feeling way different by now but my therapist told me it takes at least two weeks before you can really make any conclusions on how well it did the job. So I'm just waiting it out. My symptoms have settled down in some ways and been worse in others, and the bottom line is I still have to rely on my meds to get me through. Standing and walking have gotten easier, but sitting has been more of a problem. Right now I'm typing from my basic wooden rocker in my bedroom, it suits me pretty well. If this sitting trouble is just related to the injection itself, then I can be fairly encouraged because the standing and walking was what was hardest for me before.

I'm amazed I've been living with this for nine months now! I really don't want to sound like I'm complaining but I honestly don't remember what normal symptom free life is like. It's not like I'm always in pain, but there are so many times through my day that I'm feeling at least a little of something - stinging, stiffness, soreness, twitching, buzzing (yeah, it's like electricity and can be really annoying). Probably after the first two months I started blocking out what I was feeling at least part of the time. It just feels like me and I don't always realize it's there.

The reason the doctor decided to give me the injection was because even though I was starting to get better, it was so gradual he wanted to speed up the process. He also wanted to see if the SI joint is really the source of the problem; I should respond to the injection if it is. At the same time, my physical therapist tells me I'm such an unusual case symptomatically that what normally helps others may not work for me. She still feels fairly convinced the SI joint is the source of the trouble. It's hard not to agree w/ her because of how she examines me and can tell me exactly how I'm misaligned. Sometimes her treatments in the office help and sometime they just aggravate me more. It just depends, I'm not sure on what. She says it'll take a lot of work and time for my body to stabilize. I have to make it happen by strengthening all the supporting muscles. So far I'm on board to do what I think will help in the long run but there are times I question if we're on the right track. We'll see how things pan out and hopefully I'll have a better sense of things soon.

injection

Today I had my SI joint injection, along w/ an injection in the adjoining muscle above it that is my "trigger point." The procedure was like going to the dentist. I received two numbing needles, then the actual injections. The doctor had an x-ray set up so he could see exactly where he was going. It lasted about 10 - 15 minutes. He showed me the x-ray then sent it home w/ me. The dye leaked beyond the joint which could indicate a torn ligament but there's no clear way of diagnosing that, just something to be aware of and follow. It could also be explained by other factors.

Time will tell if this helps my leg. Today I can do normal activity but no driving or anything strenuous. I don't have any pain. The numbness is wearing off and I have a slight ache in the muscle area. I can ice it today if it gets bad.

I've had a bad lower GI problem the past week which I'm trying to help by reducing my intake of iron (it's actually not constipating but the opposite). I called my neurologist Monday since she's the one who prescribed the iron but she was out of the office. Knowing I had this injection coming up, I went ahead and reduced the amount and will check in with her later. If everything gets back to normal on its own I may be able to resume the full course.

Dave found out that the inflammation in his bowel has increased from a blood test he had done. This is not good news, since he's been trying Cymzia and has had enough that it should have helped by now. I guess you could say we're still in the limping along through life mode.

Samantha was sad

Samantha was sad after school today. Why? Because they set the butterflies free. For the past couple weeks, they've watched them grow as caterpillars, build cocoons, and turn into beautiful butterflies.

I had a little talk with Samantha about how life is always changing. The butterflies teach us this. Change can be hard. The butterflies were probably happy to be set free, or at least oblivious, but the children they left behind had to say good-bye. There was a simple attachment that had to be broken.













And such is life. We make attachments and then have to let them go. Things change. Change has its good and bad sides. My firstborn will soon be a high school graduate. A very very good thing in light of all he's been through. But also a hard thing. To say good-bye in a more formal sense to childhood even though he's technically and maturity-wise an adult already. There's that push/pull, push/pull dynamic to everything in life.

Attachment is a good thing. I know this in more ways than one as an adoptive mom. We all need it to survive. But attachment and change are a recipe for pain. Is that where I should end? Of course not. Something is permanent. Our hearts are made to long for it. God, His kingdom, His people, and eternity. So as someone said, (and because I'm not as educated as I should be I don't know who), "the only thing that stays the same is change itself", is only true for the temporal.

random entry

I have nothing much in mind to say, just lots of time to say it since I'm sitting in clinic waiting for Ethan. My SI joint is bothering me so I have to sit in a somewhat comfortable position I've found and type away. I did strengthening exercises at home this morning, plus I'm trying to get away w/ wearing a different pair of shoes than normal - both are probably causing more discomfort.

I think I forgot how intense plain old normal life can be, without the extra health issues. This week our sump pump failed as well as the backup battery pack. We didn't have a lot of major "flooding" but in the end still have to have carpet restoration with insurance kicking in a part of the cost. Ethan's room is very important to keep dry because it's risky for him to be exposed to mold.

A friend of mine asked me what I'll do next year when all the kids are in school. That's where this line of thought about the intensity of normal life comes from. This past year, there were so many things that didn't get done at all or we paid other people to do or had volunteer help just so we could function. Someone happened to see the outside of our house yesterday and pointed out that we need to replace the extensions on the gutter drains to keep the water away from the house. When is that going to fit into life along with the million and one other things that need attention? My main "extra" focus this month has been Ethan's upcoming graduation and working on details for his freshman year at ISU. There's also Katrina's school, taking care of Samantha, doing the housework I don't pay to get done, cooking, driving girls to lessons, and multiple other things. And Dave is swamped w/ his extra responsibilities at work and trips to Memphis.

But next year when I have more "free time" what will I do with myself? It would be nice to shop more economically for one, something I've wanted to do for years. I clip coupons and take advantage of sales at the grocery store, but don't have time to shop around. It would be nice to get back into crafts or more sophisticated cooking. The kids (and Dad) would love it if I did some baking and made more use of the bread machine they just gave me. I'd like to volunteer at both the girls' schools. I'd enjoy pursuing long-term interests w/ tutoring ESL and taking advantage of adoption/pro-life opportunities. I'd enjoy being able to participate in St. Jude and cancer awareness programs.

I know I'll need to continue with my health care and have an exercise program. I hope I can start playing keyboard and attend functions at church again, esp. in women's ministires. I'm missing their retreat this weekend and haven't attended the weekly Bible Study all year. We haven't been involved in attending, hosting or leading a small group in a long time.

There are so many things to do! God-willing I'll be able to manage even just a few.

Well that's my random entry for today.

Health Update

I am "managing" I guess you could say. It would be nice to feel totally normal but movement of any kind below my waist triggers my symptoms. When I wake up in the morning, I feel no pain. When I settle in for the night, I usually feel fine. When I sit down to rest, it's sometimes challenging to find a comfortable position but I can almost always get relief. I bought a new recliner rocker that fits my small frame and it's made things more bearable.

When I'm mobile, my leg starts to ache, burn, or stiffen. The SI joint in my lower back sometimes bothers me depending on my position. But I'm starting to figure out what I can do to minimize the discomfort. I called the doctor a few weeks ago about taking a medication that targets nerve pain - the generic form of Neurontin called Gabapentin. I've known about it for a long time because Ethan's been taking it, but hesitated to ask for it because I wasn't sure what effect it would have on me, making me extra tired or dizzy. But now since I've increased my strengthening routine for physical therapy, I've decided I should try it. I want to do the exercises in the hope they will give me long term stability but they really aggravate my symptoms. I try to do most of them in the evening when I can rest, like I'm doing now. The Gabapentin is definitely helping and only makes me a little tired and dazed once in awhile; I may eventually ask for a higher dose because it's taking off the edge but not removing all the discomfort.

The other thing I have that helps is a steroid cream for my SI joint. It works well. After a physical therapy appointment, I get a 24 hour patch that works the same way. I'm also still wearing my shoes all day and wearing the belt just above my hips. Another part of my routine includes doing correcting exercises after I shower in the morning; I start to feel worse leading up to that point but then I'm good to go for awhile.

As far as the big picture goes, I'm still able to accomplish a lot through my days, it's just a matter of timing. The kitchen and house get put in order, the wash gets done, Katrina's schooling continues, Samantha's plethora of needs get attended to, the girls get transported to their extra activities, dinner gets on the table, errands get run, other details for the boys get taken care of including chemo, college entrance requirements, etc. etc. We've had to make some changes including Dave helping me get groceries, hiring a house cleaner, pacing myself and unfortunately giving up some of my former life for awhile - playing keyboard for church, attending women's Bible study, small group, entertaining, and volunteering my services for various ministries.

I've realized I've gained other things to replace what I've given up. I'm writing again, which is something I haven't done in ages. Maybe I'll play my piano again one of these days which I haven't touched in ages. I've listened to some awesome sermons on my Ipod and discovered more worship tunes that have nourished my soul.

I was sharing with a friend early in Ethan's illness how hard it was for me to see him lose so much. Her son is Ethan's age and they're both graduating this year. Her son's life has been very full, including being student council president for two years at a very large school. My friend said something truly profound, that when God takes something away He often replaces it with something else. And you know what, I've seen that materialize, especially with Ethan's Make a Wish gift. Who would have thought Ethan and Bryan could do what they love to do right here at home, making awesome videos, recording songs, etc. And the same is true for me. God is replacing some of what I've lost with other good things. This entry is getting too long so I won't elaborate, but I'm thankful that I've been blessed the way I have.

My Philosophy on Healing

Whew, I guess I'm taking up a big topic today. Actually it's rather simple. I've come to form this view over many years, and am open to God revising it whenever and however He wishes.

My view basically boils down to this: God is the creator, and He is the healer of broken bodies. This healing can take place in many ways. We may put some in the "miracle" category, but all healing is by God alone through whatever means and timing He chooses. His children can expect total healing in some form and can confidently pray and trust that He will answer. As we approach Easter, we must acknowledge that the resurrection is the ultimate form of healing, but we can expect significant healing in this world as well.

Now I'd like to share some of my experiences and what God has taught me through them. When Dave was first diagnosed with Crohn's, we prayed for God's supernatural intervention before he went through with the surgery. I was scheduled to sing at church during this time and chose a song titled "He is Able." Before I sang, I dedicated the song to Dave. We were trusting God for healing, and because the surgery ended up being necessary, we embraced God's sovereign will that although He was able, He did not remove the Crohn's without the help of the surgeons. We believe He guided the surgeon's hands and spared Dave's life; Dave went into total remission for six years following. Dave grew spiritually as the surgery loomed over him, being confronted with his mortality and gaining a greater appreciation for the blessings in His life, first and foremost our family.

When Crohn's reared its ugly head again six years later, Dave was able to consider other treatments; the first time he had no other options because his urinary tract was compromised. Aside from Prednisone, which is a steroid that is problematic long-term, none of the treatments worked. He even had an allergic reaction to one. Dave had a second surgery, but it did not bring about the desired and expected result. During this time I adopted the "manna" principle for healing. Dave's been prayed over and anointed with oil by the elders, and I believe his health is a daily step of faith. We trust God to SUSTAIN him and give him what he needs for each day. God has faithfully enabled Dave to have an amazing influence in our family, at our church, on campus, and in our state, all while dealing with the ups and downs of his health. We're still praying for even more and constantly seeking out new treatments, some of them "non-medical." It's been a long interesting journey and the manna keeps coming.

Something just came to mind which I'll share. My mother lost her oldest sibling to illness - there were several siblings at the time and my mother was not yet conceived. My grandparents believed that taking their child to the doctor negated allowing God to directly heal her (I'm pretty sure money was partly involved as well). Unfortunately they lost her. They did end up taking her to the doctor, but it was too late. I could be tempted to allow this to shape my thinking and not trust God enough for supernatural healing. I've tried to be careful about that. I greatly respect my grandparents and know they tried to exercise their faith as God led them. The main thing is that their eyes were on the Lord and that's what really counts.

So to wrap up, as things stand now, I am trusting God to bring about a surgery-free healing and/or sustaining of Dave and also a restoring of Ethan to good health. I view Dave's careful maintenance of his weight and responding to flare-ups w/ dietary restrictions and rest as his "manna", along with continually seeking out other medical options. I view Ethan's chemo as his "manna". For myself, I'm seeking God's help in making the right decisions and taking it one step at a time (both figuratively and literally). It's a process, and God will heal all of us as we walk in faith with Him. Ethan seems "healed" to me now, but we must keep going with the chemo. We must follow the protocol because God has ordained it for him. We know the people who are working with him and how much they've invested to keep him alive. They really care for every child they save. This is God's way of telling us that His hand is directly on Ethan through them, just as His hand was upon him through the elders in February '09 in Peoria.

Similarly, my physical therapist is a Christian, has SI joint dysfunction herself, and is probably one of the few if not the only specialist in women's pelvic health in our town. I too have received anointing prayer, not for this most recent illness, but for a former one at which time I "just happened" to be teaching on a healing-related passage in Mark for our women's ministry at church. My beliefs stem first and foremost from God's Word and then seeing how He works in the lives of those who trust Him.