Monday, March 19, 2012

12 Steps

Rick says there were several times my therapist let go for several steps today. I still walked like a drunk, but surprisingly better than last week. Rick took one video where my therapist let go of my belt for about a dozen steps! We hope to post to the video to Facebook (see previous post for links) later this week.

I'm still wearing 3-pound weights on both legs when I walk to help my brain understand my body's place in space. I am finally strong enough to wear 1 1/2-pound weights on my arms, on and off, here at home, for the same reason. My left hand continues to be rather non-functional

My left shoulder has acted up all week, so today in therapy, we skipped any machines or exercises that could irritate it or cause further inflammation and pain. I've had it explained to me that the shoulder isn't fully dislocating, but because of the muscle weakness, it does repeatedly slip partially out of its socket, thus causing pain to an otherwise mostly numb area of my body. It "popps" back into socket several times per day and that's painful when it happens, but ultimately brings some relief.

The only way to strengthen the shoulder is through specific exercises that I have to do several times per day, but most exercise aggravates and inflames the joint, bringing more pain and loss of mobility. It had calmed down for the few weeks I was out of therapy (between home health discharge and my first outpatient appointment), even though I was continuing with an exercise regiment here at home, but now that I'm doing home exercises on top of regular therapy, my shoulder is giving me plenty of trouble again.

If you are looking for a specific prayer focuses, we would appreciate real prayer for our marriage. We hope to celebrate 20 years of marriage this August, and though we've been through a lot of painful things (business loss, unemployment, infertility, recurrent miscarriages, several adoption losses, chronic illness, etc.) this outranks any experience we have yet faced. This has already been a long and painful trial and we know we have many more months or years of adjustments ahead of us before we can begin to find a "new normal."

Even if I do regain physical functions through God's re-wiring of my brain, there are six areas of my brain that are (barring God's miraculous invention) dead and cannot be recovered, so my cognitive process have been forever changed. That's hard for both of us to cope with. Although, Rick married me "for better or worse, in sickness and in health," this is a trial neither of us remotely imagined facing! God's power is our only hope or strength!

We would also appreciate your prayer for wisdom and unity in parenting. While we still haven't moved the kids back home full-time, this has been a painful growing season for every member of the family. We are finding parenthood to be more challenging than ever and know we desperately need God's guidance. Our kids are finding life to be full of surprising adjustments and challenges. This is one season where I'm especially thankful that Noel, Joel and Hannah never had to face any of the challenges of this broken world! Please keep J. (boy, age 12), R. (girl, age 9) and especially J-Bear (boy, age 6) in your ongoing prayers! I know God's purpose in this must include their lives in His holy plan, so I am learning to yield them in a way I never have before, but it is heartbreaking to watch them go through such deep struggles and be fully unable to fix anything or make the situation any easier.

Physically, besides longing for walking and seeing better (my new glasses will have to be exchanged, as they create a "blind spot" in my good eye), my TMJ remains my most ongoing and painful "thorn." My therapist works on my jaw about an hour per week and it the process is so painful I fear I will throw up on him (something my sweet husband has already endured) one of these days, from the intensity of the pain (and this said by a woman who has survived endometriosis and three unmediated labors). He says my jaw dislocation is very deep and we can't even begin to address the slipped disk in the jaw until he has re-adjusted me enough that the muscles relax enough to begin trying to move the disk back into place in the jaw joint. It is very strange to experience a numb left half of my mouth and feel such deep and profound pain in the left side of my face, my jaw joint, my lower jaw and my teeth!

Another couple thing that have really "gotten" to me this week are the finality of our sterility and my self-image. Before my strokes I had been praying about adopting another child. Even though it's been 3 1/2 years since my (medically necessary) hysterectomy, and though we've been abundantly blessed with living children, I still held out hope that "someday" (sooner rather than later) we would continue building our family through adoption. God had other plans. Instead of caring for a baby, I'm dependent on others to do my laundry, cook my meals and clean my house. The door feels firmly locked and bolted closed now. For the first time in a long time, seeing a sweet baby made me cry on Sunday and that familiar old ache was back in my heart. We've had three turns I thought we would never have, two after I had been told to expect a hysterectomy - I am so blessed! But it will never be again, and that finality is hard.

I keep another blog called Inner Beauty Girlz but I guess my message, that outer beauty is fleeting and that true beauty comes from Christ on the inside, is one I still need to learn! I started sobbing in church Sunday while everyone else sang, "You make everything glorious, and You made me!" I could only think of my brokenness, my chopped hair, my crazy eyes, my weight gain and my losses and inabilities. At that moment I could not think of Christ or who I am in Him, but only of my ugliness. I have voiced to several people that if only I were a baby or even a toddler I would be "cute" in my re-learning how to walk and move my body, but so far no one seems to really understand my self-loathing. Obviously, I am still really struggling with this.

My book on the fruit of the Spirit, is also coming along, like my physical healing, very slowly, but it is continuing to move forward. I'm asking the Holy Spirit to give me wisdom about what He would have me say about Himself and His work in our lives. Please join me in praying about this.

That's all I can think of to update for now, but it gives you a picture of where I'm at both emotionally and physically. Thank you, again, for your faithfulness in ongoing prayers! God is faithful and gracious and so good!!!


Michelle B said...

I continue to pray for you and I can understand self-loathing. I've had body issues and self esteem issues for years and they've only grown worse the last few years with weight gain due to CFS and Adrenal fatigue as well as the yeast and mold issues and having to lead my life now within the limitations of my body and not crossing the invisible line that will put me in bed for sometimes days at a time. God made us and we serve him as we are and you have always done that and continue to do that. I wish I could be physically there to help you in your struggle. Know that I'm there in mind and spirit. Know that God loves you. I can understand how you feel and pray for God's blessings no matter where they come from or what they are to fill the broken pieces of your heart, even as pieces come up missing because your heart has been broken so many times that not all the pieces will fit back together. Know I love you and you are in my thoughts and prayers. Love, Michelle B

Wildaisy said...

Jenni, thank you for sharing your journey. You are an amazingly loving person, and I know everyone in your family are with you emotionally every step of the way. Think about how much you love them, and then know that they love you the same way.

This is not an easy journey, but you can do this through the love of God and your family. Bless all of you.

Patricia Carter

Kari said...

Jenni, I will continue to pray for your recovery, your marriage and your children. This post moved me to tears--I am so sorry everything is such a struggle. You are a strong, strong woman and obviously, God is nowhere near finished with you yet! You have been an inspiration to me in so many ways, for so many years, through my own infertility struggles. I know that God will continue to use you and will use ALL of this for his glory. Hang in many are praying for you and love you.

Anonymous said...


So happy to see your healing continues. It is very difficult to be patient during recovery from a stroke. The progress is slow but you are doing so well! You are young, the brain is very plastic, no one can put limits on your recovery. Just keep going.

The shoulder situation seems horrible! Use your own wisdom along with all else.

Regarding the trigeminal neuralgia, please see:
I and many others have had complete relief from pain from the use of topical capsaicin. It works in a very mechanical way which stops the nerve from being able to transmit pain. the underlying cause remains but you no longer feel the pain. It is a miracle. It must be applied with care as it is pretty unpleasant to get it in yours eyes, or other sensitive places -- I know this from being careless many times. I have used it for about 10 pain free years.

Carry on healing... just carry on...