What can I tell you? What might you really want to know and what's just TMI? I have a very hindered sense of what's socially appropriate to share.
I want to be transparent, but do you really care that I was successful (so far) in this attempt at dropping from 3 daily stool softeners to two, last week? It's a huge victory for me, but likely not terribly blog worthy. The joy of living out a private tragedy in such a public venue...
To up my dose of one pill, we had to change manufactures/formulas. It's been about two weeks and my tummy/digestive system and emotions both seem to be in upheaval over the change. Prayerfully, things will start to settle down soon. Hey, at least I'm not having too take as many stool softeners now. ;)
When I sneeze, I am usually successful at keeping nasal secretions where they should be until I get a tissue, but my laptop, clothing, or the person sitting across from me regularly take showers in my forcefully spit-sprayed saliva. I wish I could learn to control that bettrer, especially if I have recently had food in my mouth before the explosion!
It's been a hard week. Lots of tears. I described myself to a friend as simply being, "battle weary" on Thursday. This article helped a bit. I know God wins in the end, I'm just aching to taste a measure that victory now. I'm doing, not great, but somewhat better now. Thank you for prayers and encouragement.
My husband teased today that he's going to stop taking me to church, because even if I have a good week (not this past week!), I usually end up in tears there. He said he was sad that something there always seems to upset me. I tried explaining to him that I'm really not usually any more upset than any other time, it is just that I let my guard down, open my heart, and let myself become more vulnerable there, so the tears flow more readily. Today, we didn't even make it to the opening song before I was blubbering.
One thing that did upset me today (a circumstance that's been building in my heartache and could have happened just about anywhere I went in public) was that a mom was kind enough to trust me and offer to let me hold her baby today. Anyone who knows me well, knows that I LOVE babies and have "baby radar." The heartache that's been growing all these months is that I am now unable to safely hold babies and no one has even offered to let me, since the strokes. Today, the offer was made and my eager heart so wanted to say yes. I was seated so gave it a moment's serious consideration. But, ultimately, pointing to my dead arm, I had to decline, for the child's safety. I felt so blessed to even be trusted enough to have this offer, but I was so mad at myself for having the chance within grasp and having to say no. I guess if someone visited in my home we could probably set up a safe environment here at home, supporting a child with pillows and such, but a straight bench at church was not the place to try! This is what started the tears today.
We went to the pool Friday night. I practiced therapy things the whole time we wre there. Rick was worn thin, keeping up with the needs and skill levels of 3 different kids (and me). I nearly broke down in tears there too. I told Rick, "I hate not being myself anymore." I especially hated not being able to help our 6-year-old stay above water as he learns to swim. I couldn't go underwater with our daughter (even if I could, I still have to keep my ear dry) and I couldn't swim out in the deep water with our 12-year-old, past where I could reach the bottom. I now love being in water because it sooths pain and makes me feel so light. Getting out, on the other hand, I feel so clumsy and heavy. For all the pain I didn't feel while in the water, my shoulder sure screamed that night and the next day.
I spent many month thinking, "I know God wins in the end. This world is not my home. But what is my purpose here and now, while I wait?" Here's a picture (from Facebook) that generally describes my overall reasoning now, a thought and effort that normally brings me much comfort."Until God opens the next door for you, praise Him in the hallway."
I don't know what "next doors" God has planned, so I'm trying to see this season of life as a "hallway." I do better at that, some days than others.
I have a friend who had a brain injury years ago. I met this couple after the accident. I don' think I have ever seen the husband smile, not even in pictures. (Well, yes, in his wedding picture, but I'm talking about anything since the accident). I have no doubt that he loves her dearly, is dedicated to her, but their is obvious ongoing grief there, such drastic changes to their present, future, and all the hopes and dreams. :(
I so don't want to be a weight to my husband. I pray God will restore joy to his heart, to our lives. I don't think most people have a CLUE how intense, or long-lasting, the level of stress experienced by a spouse. As you pray for me (thank you!), please continue to hold Rick and our kids in prayer too! One of my greatest fears, at the moment, is eventually getting Alzheimer's too, loosing even more of my memories and reasoning abilities, and putting them through even more pain.
OK, so now that you've listened to lots of things you might not care about, here are my progress updates that you are really here to read...
I will just go down the list of categories most folks ask about. I think I am maybe starting to hear a bit more? I'll see the ear doctor again in about 7 weeks. For anyone interested, here's a very basic explanation of how we hear. My surgery was of the middle ear.
Still no driver's license. I'm still not cooking regularly, but a bit now. For a variety of reasons, I'm still working on getting in with a counselor. It seems like I'm not seeing as consistently well this month - maybe I'm just physically worn out? Mt sight is mostly singular in front, most of the time, but very doubled peripherally. I'm still awaiting the MRI for my shoulder.
I am thankful for both my ankle and wrist braces. They are pretty comfortable, but hot. I still roll my left foot more than I should, even in a brace, so I'm probably wear shoes out quickly on the sides, but I'm very glad to be able to fit into shoes other than my heavy tennies occasionally, now that I am in a brace that isn't so heavy and fits me better. Unless a shoe is very flat and has a sound back, I can't wear it. I still try to walk out of some of those! Since my knee keeps giving out on me now that I am using my ankle more properly, I will ask about that at therapy tomorrow.
I am still hopeful to be able to query my next book by the end of this year or the spring of next. Writing's going slower than I would like, but I am happy with the words that are coming together. This necklace seems to capture so many themes I wish to write about.
My jaw is about the same. Some of the head pain there seems to be related to my ear and I'm hopeful it may resolve a bit as the ear heals? A lot of pain is now radiating down my neck as well, which is common with TMJ, according to the reading I've done. My teeth are starting to really hurt on the left and I still can't open my mouth as wide as I used to. I had to leave some breakfast on my plate this morning because I couldn't open my mouth wide enough to take the bite. The pain in my teeth, under pressure, does bring me a little more hope that the overall left side numbness will resend?
Kendra is back home. At my next monthly update she will be at the stage (time-wise) where I was when she first went in the hospital. My heart just aches for all she is going through. It is hard to read because it dredges up so many memories, but I am hoping to be the kind of friend, just a few steps ahead of her on this journey, that I wished someone could have been to me.
I am currently investigating equine (horse) therapy. I doubt insurance will touch it, but it sounds like it would be so very good for me, if we could.
I'm consistently walking with a cane now, much to my physical/neurological therapist's awe and surprise. Not walking is just not a long-term option in my mind, so the walker had to go as quickly as it was humanly possible.
Well, I guess I have rambled long enough. Thanks for listening. :)
I cry out to God Most High, to God, who fulfills his purpose for me.