Monday, April 10, 2017

Prayerful thought

"Like everything in life, if you have a good foundation, you can build a really tall building...or a really tall life." Andy Bassich 'Life Below Zero'
Thank-you, Jesus, for being the cornerstone of my good foundation. I pray my life will indeed, be tall.

Becoming an introvert?

My mom posted a meme today about introverts uniting. The joke was something about them being uncomfortable and wanting to go home. I commented, "I've never been one but, since being ill, I find it harder to concentrate in groups and I now treasure the quiet in my house. Before 2010, I used to try to flee it. Now, I don't want to leave it. It's just a lot of work and worry when I'm out and about because of the ostomy bag and short bowel syndrome. Life's so much easier just staying home alone. (When people are over, I worry about them feeling neglected when I have to leave the room so often). However, I still recharge by being with people so I'm still an extrovert. I get depressed if I have too much time alone. Kind of an odd place to be."

I wonder if this is common with those dealing with such a severe form of a chronic illness.  What do you think? What are your experiences? 

I will admit that preparing for any trip away from home fills me with dread. There is so much to prepare. I always have to have a change of supplies and clothing. And, it's not fun changing my ostomy bag in a public restroom. I'm thankful that it doesn't take the hours it used to last year when I had the stoma AND a neighboring fistula opening that caused constant failures of both coverings. Maybe because what I deal with is so icky, the embarrassment makes it harder than another illness might be? I don't know. I just know that I still LOVE being with others and I treasure my time with them. A friend from church contacted me last week about going out to lunch with her and another of our friends. I looked forward to that for days. I zealously guard my Tuesday Morning craft time with the craft crew. These friends are not a stressor at all. They are my comfort and support crew. Most have some chronic illness--one even has a stoma--so they "get" me and there's no embarrassment. They have walked this whole journey with me.  I only feel badly when I'm not able to focus for long times on their conversation. I think all the anesthesia has affected my ability to concentrate. They don't say a word, however, they love me as does my family and my church. I'm grateful for God surrounding me with such a wonderful group of friends and family so that I can get the extrovert time I need to recharge without all the stress. 
I know that introverts enjoy and need time with close friends and family, don't get me wrong. I just know that they recharge by being alone and they NEED that time as much as I NEED time with close friends and family to recharge. Yet, I do find myself being drained when I don't get enough time alone. So maybe I am changing. I've always thought people were always one or the other. However, it's not being true in my experience.

(Sorry about the rambling post--just thinking something through).

Monday, March 13, 2017

Intimacy and Illness

I just found out that something I said to another lady dealing with long-term health problems made a big difference in her. Today, I received the following private message.

"You had mentioned how important it is to stay intimate with our spouse. To make love once a month. And how for some of us, the response would be "Once a month? How am I going to do that?" While for others it would be more along the lines of "Only once a month??? Aaaaaaaaaargh." You said something about our needing to remember our spouses and that we aren't the only ones suffering through these circumstances. It really made me stop, look, and listen. To realize that no matter how much I didn't feel like it physically (pain), it would mean the world to Dan for me to make that effort. To realize that I wasn't the only one who was having to cope with these circumstances. It isn't that I was completely unaware of that, but I was feeling so sick, and hurt so very much, I just wasn't sure how that would even be possible. But ALL things are possible with God, and He made the way. It even brought Him into that area of our lives in a way that I had never imagined. Deeper intimacy. Making love does just that - it creates and nurtures deeper love between husband and wife. It reminded me that making love is glue that holds us together. That keeps the enemy out."

I cried when I read that. Something simple--a testimony of what God has taught me in my illness, has brought deeper love between this couple. Isn't God amazing?

The funny thing is that I've been revisiting this issue in my own marriage. I'm feeling better and we're enjoying one another more. However, there was still one thing that prevented me from fully entering in--and even initiating oneness: I feel ugly--a stoma and it's appliance are not just unattractive, they're gross!

However, God is good always and an answer was at hand!

Because of the number of snow days and cancelled school in our area, our kids had to go to school on President's Day as a make-up day. My husband (Handy TechMan) had the day off from work! We had an entire day for just each other and we made the most of it. You see, with an ostomy, I don't feel like I look very sexy for him. I want to look good. I want to be beautifully desirable in his eyes. I have a band that covers the bag but it's just buff colored--serviceable but not very pretty. I've shared this feeling at different times. He determined that we were going to take care of that for me. On our day he took me to the mall and we visited almost all the stores that had lingerie. I wanted something lacy and form-fitting that would cover my midsection and be pretty while we enjoyed one another physically. It also had to allow access to the important "zones." It was tough to find something that worked because I also wanted to be classy. I tried lots of styles and options but finally found a lacy, lined, camisole that held the bag in while still skimming my midsection and providing the necessary easy access. ;) I looked pretty and feminine in it and HTM liked it, too. It wasn't cheap but it has been worth every penny!

It's funny, but this small scrap of clothing freed me from embarrassment and (despite the extra layer of cloth between us) removed a barrier to being one with my husband. Now, I will even initiate rather than simply being will when he led.

As we have become more regular in the physical aspect of our relationship, our emotional hurts and loneliness from my illness are being healed. We are becoming one in mind and spirit again--not caretaker and invalid.

It's easy to let our illnesses take over our relationships. So, fight for them. Do what you can--even if it's a simple kiss on arrival and departure--that's all we had for a long time. Connect physically with your spouse. It's way too important. Because, like my friend said, "...making love is (the) glue that holds us together. That keeps the enemy out."

Monday, January 30, 2017

God has been telling me to write about my last 6 years of health problems and the things I've learned. I have been procrastinating and simply making lists of topics to write about. My current goal is to post once a week. That's do-able and not so frightening to me. If you have followed my blog in the past, I'm sorry that I have not had the mental ability or energy to post. I'm hoping that now that I am stronger and in a healthy time, I can share and help others as they walk through their own trials. I'm praying that through my story, God will be honored and trusted.

Grieving the Death of a Dream

This was written first on 1/19/17.

I was led to reply on FaceBook to a friend's post about the destruction of her life as she knew it—the details aren't mine to share. However, I was able to speak some hard-won hope to her grief.

"Honey--you're grieving! And it's more than grieving the losses you've suffered--it's also grieving the dreams and that's so much more difficult to come to terms with. I know. I deal with that with my illness--I can't go on the church mission trip to help build homes in Mexico and stuff. I always wanted to be able to do that. As the time grows closer, it will be harder! I grieve the what might have beens for my my learning disabled son--probably a traumatic brain injury from birth or an allergic reaction--or both. He's brilliant but many can't see because of the ways he's also broken. I understand this kind of grief and at these times, existence is good enough. Love you and praying that at some point, the pain will lessen and the grief will have less freshness and power over you and that the times these aren't in the front of your brain will grow longer. Then, you will do more than exist--you will live. You are a very strong woman but you have been shaken to your core. Everything you're going through is normal. I stand on the other side of many of these times to tell you that it does get easier and it's even possible to be thankful for them. I know that is not believable now. So, you need to trust those of us who have walked our trials to the gratefulness along with the grief. I have had to do that and now it's my turn to extend the hand of loving help to another. Rest well and keep existing--that's enough."

I should have added, "for now."

Monday, May 25, 2015

I'm Back from Hiatus

Well, I have been having quite a time and blogging was too hard. I spent 6 months in the hospital in 2013 and then kept going back off and on in 2014 for a surgery to correct the fistula that had caused the 2013 ruckus and for hydration issues in the fall. So far, this year, I have had another fistula and am back on the TPN (total parenteral nutrition) every night. It's slowly closing (hopefully) and I am hoping that it won't require any surgery to fix. Still, I have plenty of energy and have been getting back to where I was before 2010, in all honesty. We live a new normal and this blog is transforming to a place where I can candidly share about life with CROHN'S Disease (all caps because it has affected every aspect of our lives).

So, stay tuned and I will be writing here more regularly. My prayer is that you, my readers, will be encouraged and blessed in your daily lives.


Wednesday, January 16, 2013

A New Chapter: Accountability Captain?

I'm supposed to be an accountability captain? If only people knew how my good intentions so often end in inaction. I believe in this concept, though. Hello Mornings is a great idea--a great way to encourage women to build better habits in Bible Study, Exercise and Day Planning. I need this. I need to be better at mornings. Mornings are my nemesis. It's so hard to get going. Since I was so ill, my morning routines have become noon routines. I need a new routine, I think. The whole "get up, shower, dressed, make-up, etc routine won't work with my health constraints. So, I need a different thing. Something more gentle. However, time in the Word needs to be part of it. My hope is that I can figure out how to get it all done in a more gentle way.
We'll be studying the Book of Job. The theme is "Abounding Hope." Job and his message of hope in spite of circumstances, has been a lifeline for my husband and I over the last three years. When I first had a little infection, we never knew it would mean an entire life change and breakdown in my health and almost uncontrollable recurrence of my Crohn's Disease. Despite this, we've seen God work in our lives and in the lives of those around us. He's used this to encourage others in prayer and faith and determination. So, I have hope in our trial. Hope that God will continue to work His will.
I'm excited to see the names of the ladies who have signed up with us. We are all ages and in many different stages in life. This will bring a richness and depth to our group. Yeah!
While I start this new chapter, I'm also starting to meet with two other ladies for a Bible study. One lady has never been in a Bible study before. After today's meeting, she's encouraged. I am, too. I can see God moving me into a new area: discipleship. He's just naturally placed different opportunities in my path to meet with women to encourage them to grow in knowledge and faith through studying the Bible. Before my illness, I was too busy. I was too busy to be home enough to have women over for Bible study....or to meet online with women for Bible study...or to even spend time on my own here at home studying the Bible. Now, I'm home and I'm freed to do these things. I'm glad.