Here is what I don't think I will ever get used to: seeing Joanne in pain. It is not a thing I have had to see too often. When she had the girls, she was in a lot of pain, but there was something really good that came at the end of that pain, and it had a definite end point. Like, this is going to hurt a lot for a few hours and at the end of it you are going to have this whole new little new life, your daughters!
From time to time Joanne has had back problems and sort of moves gingerly around the house. But enough Advil and some rest seems to get her back on her feet. Hard to watch but again, in the scheme of things it's pretty minor. At least it is in relation to what she is dealing with now.
And every once in a while she would cut her finger in the kitchen or knock her head on something. So I have seen her in some pain, but it has always been clearly temporary and relatively minor.
But the pain she is in now seems somehow different. She has been in some form of constant pain for the last couple of weeks, and the pain seems to be getting worse. Today in a text message I asked her what hurts. Her answer was "head, arm, shoulder, hip, bladder." I tested back , "That sounds like just about everything!" Her response, "Yep." I hate that there is nothing I can do other than fuss at the doctor and nurses to get her meds figured out so that she can be comfortable. And they could easily get her out of pain. Problem is that then she would be stoned, and it's hard to do therapy when you're whacked out. So there is this fine line to walk.
And Gran had to deal with all this through most of the day! I'm not sure how she didn't just go berserk! She had to watch her daughter in pain and couldn't do anything about it. Plus delays in meds are enough to drive anyone batty! The tough part is that Joanne is just simply going to be in pain through this process. That's a big part of rehab. So those of us on "Team Joanne" have to help her cope with the pain that comes naturally in this process, we even have to push her to work through it. Rehab is going to be brutal and she needs to be able to rise to the occasion and that's going to take some pushing from us. But we have to help her medically as best we can too.
That's the problem with pain. Too much is bad; some is to be expected. Where to draw the line? If you have the answer for this one, let me know.
So, here's what happened: she got a lydocaine patch on her shoulder, she got her pain meds doubled, her anti-depressant was increased, and she got a new sleeping med. Whew! Man I hope this works! We don't want to see her in pain, but we don't want to see her therapy compromised. Not to repeat myself but when she goes to rehab they are really going to step things up. She is going to be pushed beyond what she thinks she can handle. And we need her to fight for it, to give it all she's got.
Prayer Requests:
1. Pain management for Joanne. Not to much, not too little, but just right.
1.5 Joanne is depressed and discouraged. If you pray for one thing, pray for this: that Joanne's sprits would be lifted and her discouragement would fade into the background. She has come so far but it seems like she is hitting a bit of a wall. Honestly she has been at this for two months now so it's no wonder that she is ready to be done with all this. Pray that she can focus on her progress and not on her limitations.
2. Strength for "Team Joanne." As much as we want her out of pain the days are coming where we are going to have to show a little tough love. If she wants the best possible results in rehab she's gonna hurt. We need courage and wisdom to know how to help her through this time.
3. Positive meeting with the neurosurgeon on Wednesday and all the details to go smoothly. She is going to go via ambluance and transporting her from one place to another is no small task. We really want the surgeon to want to put the brain flap back in pronto!
Toben
It is so easy to type the words, "I am praying" yet I don't even comprehend the magnitude of what Team Joanne continues to be pushed to endure. All I can say -again- is THANK YOU for being so vulunerable - so open so that all of us out here in cyberland can learn from your very true life example. Jesus promises us that He WILL bring us out from under our burdens. He will and He has shown Himself faithful in your situation.
Truly - thank you
Posted by: Carrie Hester | March 07, 2011 at 06:45 PM
Praying for the peace of God that transcends all understanding, and the strength of God too.
Posted by: Nicole | March 07, 2011 at 06:52 PM
Praying for Joanne!! I know that this is not much help but I think a little time to be down and sad about her situation is healthy :( Like you have said before this is going to be a long process. You are doing great job and you need to take care of yourself too!!!
Posted by: Tina Smith | March 07, 2011 at 07:04 PM
Praying for Peace, Patience & Perseverance! {And don't any of you be afraid to be vulnerable, genuine. The frustration & fatigue is understandable!}
Posted by: Lisa in KS | March 07, 2011 at 07:31 PM
Praying.
Posted by: Teresa | March 07, 2011 at 07:39 PM
I agree with Carrie. I'm amazed at the PRIVILEGE it's been to know your crisis, your needs, your struggles and fears and to see the baby steps back toward something that resembles what was there before. I love your love for Joanne and for your family and for the Lord. He is and will continue to sustain you all. Praying constantly, Margie
Posted by: Margie Smallman | March 07, 2011 at 07:39 PM
I have been following Joanne's journey from the beginning and although, I can't completely relate to how much pain Joanne and your family has had to endure these past few months,I can say that I can relate in several ways.
I am a young single mom and I have been in the hospital right now for two weeks.I suffer from Crohn's disease and have had to be hospitalized for a LARGE portion throughout this year. I just got out of surgery this morning and I know exactly what you mean you say talk about the 'fine line' about pain management. I pray for Joanne OFTEN, I know how hard it is being away from your own children and it kills me that my son has to be at home without his mama for extended periods whenever I have to be hospitalized.I pray for peace and comfort for your family in this season of life.
I just wanted to let you know that Joanne has been heavy on my heart since the beginning and I know what a STRONG woman she is! She is SO blessed to have SO much support. I look forward to following her progress through this journey.
-Kelly F.
Posted by: kelly forbes | March 07, 2011 at 07:44 PM
Hi,
My name is also Joanne and I came across this blog as I was searching for Girl Scout related items.
I too am a Girl Scout Leader and was reading Joanne's posts from things she did with her troops.
Then I read that she had a major stroke. It broke my heart and I wanted to let you know that I do understand a lot of what you are going through.
Two years ago my brother had a major stoke and it was also on his right side. We spent months at the hosptial and like you just some how managed to survive it.
We are now down the line much farther but he is still unable to use his left side very much. However, he has come a long way. It's a long slow journey.
It seemed like at times not much would happen and then there were days where a big progress happened.
We lived for any type of forward movement. They came almost daily. A little something that to most would seem like it was no big deal but to us, it was a big deal.
I want you to know that I have told my family about Joanne and I'm going to post her link on my blog. We are all going to be praying for her too.
I live in So. CA in Orange County. I would love to have my Girl Scout Troop send her a get well card.
If you would think that would be ok could you email me her address or where you would like us to send it. My email address is [email protected]
Thank you so much and if you ever want to talk or if I can answer any questions about what maybe you could expect with the stroke I would be happy to hear from you.
God bless you and your family.
Posted by: Joanne Kennedy | March 07, 2011 at 08:04 PM
praying tonight for Joanne! She is on my mind a lot.
Posted by: Millicent | March 07, 2011 at 08:16 PM
OK..praying that Joanne can see the finish line!! Hoping this gives her the courage, strength and peace of mind that in time she will get there...but until then she will hit walls, endure pain, and get frustrated.... but THERE IS A FINISH LINE!!!! You have to move forward toward it a little step every day!! One or two steps closer...every day!! You will get there Joanne...keep moving toward your goal!!!
Still Praying in Hurst, TX
Posted by: aTXtumbleweed | March 07, 2011 at 08:19 PM
I too think of Joanne and you all daily. I just read a new story by the wife of Bob Woodruff injured in Iraq a few years ago). The family played home movies in a continous loop for when they couldn't be at the hospital. It served as a motivator and as a way for him to see his family when his family was in carpool lane, doing homework, in the middle of the night. I thought that was a great idea. What about motivational or spiritual books on tape for Joanne.. to help her get her head wrapped around the journey in front of her. What about texting her goals or blogging a very simple goal daily or weekly. Get her excited about her blogging world. Has she seen all of the blogs out there with her button. I'm amazed at seeing her photo on blogs from across the country. Don't mean to lecture, but just trying to brainstorm suggestions. We always say, "throw a bunch of ideas on a wall and see what sticks." laura
Posted by: laura | March 07, 2011 at 08:28 PM
Praying for Joanne's comfort and your peace.
Get her a pair of red glittery shoes, like Dorothy in the Wizard of Oz.....there's no place like home! Maybe they will encourage and inspire her to work through the pain inorder to someday return home. Or maybe a plain pair, some glue and red glitter that she can add after each milestone and eventually she will have earned/created her own "no place like home" shoes.
The only suggestion I have for pain is accupunture, some folks get real relief from this procedure. I hate needles too much to try it, but I've been told it works miracles in pain relief and reducing the need for pain medication. There is enough science behind it that many insurance companies now cover the cost...you could inquire. Try it, if it doesn't work forget it, but maybe it will be the answer.
Posted by: merlin | March 07, 2011 at 08:39 PM
Toben,
I am keeping you, Joanne and your family in my daily thoughts and prayers. As I read your blog tonight, I thought that maybe you, Joanne and family might be encouraged by reading about Kathryn. She had a massive stroke and was not expected to live and, if she did, they said she would probably be a vegetable. It is so exciting to read her blog to see how FAR she has come. She gives credit to our God Almighty. What an inspiring story! I encourage you to read from the beginning, her yearly essays and her daily blog. It is so wonderful what prayer, support from family and friends (even strangers)can do. Kathyrn has ups and downs but her positive attitude and her faith has proved that miracles do happen. Link: http://www.katherinewolf.info/?page_id=575 Praying for you, Susan
Posted by: Susan Breedlove | March 07, 2011 at 08:39 PM
Holding you all up in prayer. Believe me when I say that I know what you all are going through. My daughter at the age of 29 suffered an AVM, similar to a stroke and had to have brain surgery to save her life after the birth of her third child. God is with you and know that you are blessed! Thank you so very much for staying strong together and in your faith. Thank you for sharing so unselfishly.
I am concerned about Joanne's pain and may I suggest that they make sure that she is not out of alignment or that her shoulder has not slipped out of place due to the fact that her muscle structure is not strong enough to hold everything as it once did. My daughter was in bed when her episode occurred and did not fall but we insisted on x-rays when she complained (non-verbally) of pain. Her shoulder had shifted out of place and had to be re-set. I know that you all are doing all that you can but cannot possibly think of everything. Please do not think that I am butting in, just suggesting.
This will be a long, slow walk but remember to take baby steps. Joanne, like my daughter, remembers and knows what she was once able to do and it is so hard to not be capable at this time. May I suggest some soothing music at night that might help her sleep more relaxed? It helped my daughter during her nights away from home.
My entire family is praying that you all have heart's ease on this new path that you are walking.
lovingly,
kimber
Posted by: kimber fenili | March 07, 2011 at 08:42 PM
Joanne-You are always in my thoughts and prayers. I am sure it is hard to not get discouraged, sad and maybe feel lonely. You have been through so much and you have a long road ahead. I have always been so impressed with your strength, courage, determination, wisdom and knowledge. When you are feeling overwhelmed and weary, remember the strong woman that you are and that God has made you to be. :) Pain is very difficult to deal with and I am so sorry on top of everything else you are experiencing you are also having to deal with pain. Hopefully, a pain management referral has been completed and from what I am reading it sounds like this has occurred. Lidocaine patches, antidepressants, heat and cold therapy....they can work, they just may take time. Praying for restful sleep for you. The many nights of fragmented sleep and rest will also contribute to the increase in pain so hopefully, the right combination of sleeping medication will work and get you the sleep you need. From Kim in PA
Posted by: Kim | March 07, 2011 at 08:43 PM
Still praying and praying for you all. Tough love can be so hard to show,like disciplining a child, you can do this especially when you know how good it will be for her.
Covering you all in prayer often.
<><
Posted by: Child of God | March 07, 2011 at 09:29 PM
I'm praying 2Thessalonians 3:16
"Now may the Lord of Peace Himself give you Peace at ALL times and in EVERY way. The Lord be with ALL of you!"
Praying Joanne will be pain free and FULL of God's Peace!!
Still praying for restful sleep for all of you too!
I am praising God that He has heard our prayers and believing he will continue to heal Joanne until she is made WHOLE again!!
Posted by: Colette | March 07, 2011 at 10:42 PM
I've been following your story (am a friend of Holly's). I have fibromyalgia and have received relief from pain through nontraditional therapy using a biofeedback machine. My doctor is in Corpus Christi - Donald Rhodes. His website is www.paindefeat.com. He does return phone calls and could tell you if his machine might work for Joanne. Usually you go to his clinic to get testing and the machine, but in Joanne's case maybe he would make a house call? I don't know. Hopefully it will be available by prescription very soon.
This VECTTOR machine has helped me sleep through the night without waking up in pain. I really don't know if it would be appropriate for Joanne but it might be worth a try. It's drug free.
Posted by: Christie | March 07, 2011 at 11:18 PM
Joanne and family~
I am so sorry that along with therapy you are dealing with other pains. You are incredible, you are inspiring and you are a beautiful child of God. So, so many of us are praying for you and we all hope that you feel them, even if it's just a tiny whisper.
I have no idea what kind of bed you have been on for the last few months but I know when I was in the hospital on bedrest my hips quickly became sore and then so did my back and then so did my....well everything. I know you have a long road ahead, maybe you guys can get a foam bed topper that can be place in your bed at least for the night. Maybe, just maybe that will ease some of the pains.
Thank you for sharing your story, I cannot imagine how hard this road has been for all of you. Wishing there was a way that all of 'us' out here in blogland could literally carry some of the burden.
Praying, praying praying!
Posted by: Kristen | March 08, 2011 at 12:01 AM
Hi Toben. I pray that Joanne's pain decreases. Have they tried taping her shoulder? There are several taping techniques that may help reduce her pain using leukotape or kinesiotape. You may want to ask her PT if taping might be appropriate.
Posted by: Traci | March 08, 2011 at 12:26 AM
I pray that you and the medical team somehow manage to get the right balance between pain management and continued improvement through therapy. I pray also that Joanne does not become defeated by the constant pain. Love to you all.
Lynn
Posted by: Penbleth | March 08, 2011 at 01:45 AM
Strength for today and bright hope for tomorrow!!! I'm praying!
Posted by: Julie M ~ The Little Red Shop | March 08, 2011 at 02:09 AM
I haven't commented in a while, but I have not forgotten about any of you. I continue to pray for Joanne's recovery & Toben's strength of spirit.
Joanne, I am so sorry you are discouraged & sad. I understand. I love you as a sister in Christ & want you to know that He is there even in the dark places. If I were close enough I would come visit you. As it is, you are welcome to email me anytime for anything.
"But I am afflicted and in pain;
let your salvation, O God, set me on high!
I will praise the name of God with a song;
I will magnify him with thanksgiving."
Ps. 69:29-30
Posted by: ginger morris | March 08, 2011 at 03:31 AM
Dear Toben,
pain is a terrible thing and can be very debilitating, and therefore depressing. Like you write, there is a difficult line to navigate here. My suggestion is to also increase the pain meds after therapy, like at the end of the afternoon, and then on the weekends when she can afford to be more zonked out, so that she can get a break from the pain. Constant pain will wear you down badly. It also wears your spirit down because it consumes you when you don't get adequate relief. I sincerely pray that it will get better for Joanne.
Posted by: Zita - Mlle Magpie | March 08, 2011 at 05:46 AM
An idea for pain management: Ativan. My husband was in pain after a stem cell transplant (he had leukemia). In addition to helping with anxiety, the Ativan helped alleviate the pain because it helped his muscles relax. Hope this helps.
Posted by: Trina | March 08, 2011 at 06:07 AM
Dear Toben and Joanne,
My prayers are with you both. I pray that God blesses you and gives you the strength you need to bear all that you must.
Remember, you are not alone. There are hundreds, if not thousands, praying for you now! Let the Lord fill you with His love and His strength and His peace!
Blessings to you both and your family as well!
Posted by: Maribeth | March 08, 2011 at 06:41 AM
Praying for all good things (getting pain under control, good rest, improved spirits, and more) for Joanne and her team. Please know that I am so sorry that you are all having to go through this, but your faith in God and love for each other serves as great inspiration in my life. Thank you so much for sharing your experiences and your faith. All the best to you all! Tricia
Posted by: Tricia | March 08, 2011 at 07:02 AM
I don't know from experience but from what my sister tells me (she's a PT) this is common for patients rehabilitating anything from a knee injury to a stroke. The balance between the pain meds and having them lucid enough to go through the rehab is part of the journey (yuck). Praying for wisdom for the doctors to know the balance. I'm also praying for supernatural strength for Joann and you guys. My sister says she's seen grown men cry when in rehab so your wife is one tough woman :) However, she says all the pain, hard work, and yes, even frustration is worth it when you see them make miraculous progress every step of the way.
Posted by: Carrie | March 08, 2011 at 07:13 AM
Toben and Joanne, family:
Today I'm meditating, thinking about what you are going thru, about others in the same or even worst situations, about life and how it sometimes it throw at us a curve ball. I was thinking about the most difficult time in my life, it lasted 13 years, but it was too the most amazing time of my life. It changed me, spiritually. I try to imagine where would I be in my walk with the Lord and I realized that it impacted and changed my walk for ever. I knew of God, today I live for God, in God and because of God. I wish that this time will take your spirits to high places, to an understanding that can't be understood by others because is not of human nature, but supernatural, of godly proportions were our intellect can't get. I want to share this woman of God experience with you, maybe you know of her, it makes me praise God for his greatness and marvelous will for our lives. I hope it blesses you as it did me.
http://radio.lds.org/eng/programs/conversations-episode-26
Blessings, Marta.
Posted by: marta ramos | March 08, 2011 at 08:14 AM
Praying for her pain, Toben. Chronic pain can send you in to the abyss (I know this from experience), which is exactly where the enemy wants her -- I am going to pray against the abyss. It is so evident to all of us watching that God has saved Joanne for a great purpose, and that purpose, no matter how much pain or misery is involved, will not be thwarted. It just won't. Praying as such.
Posted by: Karen Booker Schelhaas | March 08, 2011 at 08:19 AM
My sympathies and prayers are with you, as I've been reading since the stroke. I've had arthritis for 22 years, and I know that chronic pain can get a person down. The only thing I can say is some pain meds work better than others for different people. I don't do well at all with the kind that make me stoned and sleepy! There are so many non-steroid anti-inflammatory drugs, and I would suggest you ask her medical team to keep trying different things until you find something that works for her. One of the best ones for me was Toradol given intravenously or by injection. Just keep reminding Joanne that this trial won't last forever--there is hope. But we sure are praying for her.
Posted by: FloridaLizzie | March 08, 2011 at 11:10 AM
Toben and Joanne, I can't remember if I wrote this before but think I did and then didin't do the little puzzle at the end and it never posted.
Harvard trained neuro brain researcher had a stroke at I think age 38 and details her recovery. Talks alot about what helped what didn't help and how it all felt along the way. Written for the lay person but with the insight and knowledge of her profession. Book is "My Stroke of Insight" and the author also has a short presentation on TED about her experience. I hope you guys have a chance to read the book. I found it awesome. There is alot of information about the rehab period and the fatigue. I'm a nurse and found it excellent.
Prayers continue to be lifted every day and sometimes every hour.
Posted by: Lynn | March 08, 2011 at 11:58 AM
Praying for the healing virtue of the Holy Spirit to flow through Joanne's body and heal her pain, that the doctors and nurses would be directed in wisdom to know exactly what to do to have Joannes pain managed. I am also praying that God will continue to give you Toben and Joanne's parents, the girls, and family the strength to endure, and the comfort of His peace in the coming days and weeks. You are loved and prayed for in Alabama.
Posted by: Julie Reynolds | March 08, 2011 at 01:13 PM
Praying for you guys. For encouragement and for strength, and for some pain-free rest. Joanne, you are an amazing woman, a true inspiration. While you are surely frustrated at the pace of your recovery, it has been truly amazing for those of us "watching". We are proud of you. Praying, praying, praying.
Posted by: Amy T | March 08, 2011 at 01:15 PM
Continued prayers for you all.
Posted by: Leslie McKinney | March 08, 2011 at 01:44 PM
Continuing to pray all of your requests!
Peace,
Kim Feth
Apex, NC
Posted by: Kim Feth | March 08, 2011 at 03:53 PM
I know that it has to be really hard for you to see your wife in pain and not be able to fix it. I will continue to pray that God gives strength and endurance for you all. Matter of fact I will do it right now.
Dear Father I thank you for this family and their testimony. Thank you that you have a plan and that you are working out your will in each and every one of these prayer request. Most of all I want to thank you for how you are going to allow this family to comfort others with the comfort they have received. And since you said that God....I know that means that you will give what you said you would give. So I ask you right now to comfort my sister who is in pain. God fill her with your fire and strength. Show her that YOU are walking through this with her.
God I thank you for giving wisdom to the doctors on Wednesday. I also ask for a smooth transition for Joanne during this whole process. God I ask that you use her testimony to touch each person that she comes into contact with on Wednesday. May they walk away knowing that they have been in your presence. Be glorified through my sister and her family. Amen
Still praying in the Smokey Mountains of North Carolina
Posted by: Sharon Brumfield | March 08, 2011 at 05:39 PM
It's an honor to pray for you, Joanne. I am asking that your spirits get lifted this VERY minute!
Posted by: Kristen | March 09, 2011 at 05:52 AM
Heim family,
Thanks you all so much for keeping this blog updated. Thank you for blogging when you have been to tired, on all those says when all you want to do is go to bed and stay there. Experiences like this are never easy, but it's sad your strong family has to go through this. I almost was going to but it's a shame, but it's not, GOD did this for a reason. You may no the reason, or you may never know, just keep your faith strong. I can't begin to fathom what Joanne is going through! Maybe she could keep a journal or a book that she writes down here inner thoughts, and she doesn't even have to share it with you. Thank you all again so very much, your family is my hero and I know many people all across the WORLD look up to you guys (kinda hard to imagine isn't it?).
Keep up the great work Joanne, you are truly a miracle. Heim family, have you read the book The Book Who Came Back From Heaven? Its by Kevin and Alex Markalay (I think thats how you spell it) and its truly amazing. Their tragedy happened a few years ago but they still update their blog often. Praying for you all and Joanne's complete healing!
Posted by: Anonymous Prayer | March 09, 2011 at 04:41 PM