I’m Grumpy Today

I’m not sure what my malfunction is, but I’m sorta grumpy.  I got up way earlier than usual (I’m one of those who is usually up half of the night and then sleeps until noon).  I’ve got a vague headache, but that’s nothing all that new. I have chronic headaches.  Christmas was really good- I got to see (and meet) family, and talked to my biological mom and half-brother on the phone, which is always good.  I got to spend time with family at the Swedish Christmas party since I’ve got the ice vest to wear when I leave home and don’t have as much chance of being overheated because of the dysautonomia. And yet, I’m a major dud this morning.

My 11.75 year old schnauzer with heart failure was so eager to eat some ‘meatloaf’ I made for her yesterday (with controlled sodium), and this morning she won’t touch it. I’m running out of options.  She started refusing the prescription dog food weeks ago, and prior to that had been eating a minimal amount (which wasn’t all that unusual for her- but she managed to keep her weight up). So now I’m trying to figure out other ideas… have been through ground beef/turkey/chicken, oatmeal, mashed potatoes, brown rice, white rice, baby food veggies, cooked carrots (gag), baby food applesauce and oatmeal,  and various combinations of the above.  She normally likes all of those things. Now, I’m lucky if she eats some of her Charlee Bear dog treats- they have minimal sodium, so she can still have them.  If she weren’t still alert and very interested in what is going on, as well as physically mobile and showing no signs of pain, I’d have her put to sleep…but I don’t want to ‘kill’ my best friend if she’s still getting some enjoyment out of life.  It’s a fine line right now, so as long as it’s not blatantly obvious, I’m holding out… but that time is coming.  There’s only so much I can do, and I think I’ve pretty much hit my limits. 😦

I’ve been extremely irritated at comments to news stories on various online sites and publications. So many people are so heartless and cruel.  Or pathologically immature and even psychopathic.  Responding that they’re ‘happy’ about an article where five people were made homeless by a fire that destroyed their home? How do people get that way?  Who dropped them on their head?  Or burned them?  And then there are the other ‘less’ disturbing posts that are just plain nasty and/or cruel.  Or ignorant.  I’m actually very thankful I don’t know those people or have to spend any IRL time with them.  A click of the back button takes them out of my life.

The onslaught of horrible stories that are on the news constantly is also a major bummer. I feel really badly for those folks and what they’re going through, but what good does it do anybody to have it dissected in the media for days to weeks on end?  I’ve been a crime survivor of a high profile case (before the 24/7 media, back in 1987).  It wasn’t helpful to see it on TV for days or see the newspaper coverage over and over.  The people who knew about it, and were my actual friends/family already knew what happened, and face it: most people really don’t want to know about real life horrors that happen to other people.  Or they don’t know what to do with the information, at least to the persons’ face. Behind their back, the chatter won’t stop. If people would have just asked me straight out what happened, or even if I wanted to talk about it would have been much  more helpful than days of media coverage  (without any input from me- I was an object).  I had one ‘different’ neighbor that responded to meeting me with “I never thought I’d meet you ! ”  Really?  Meeting someone who has been raped and beaten was a life goal?  Step away from the strange one !

I’m extremely disgusted with my weight, and have my food diary set up to start on January first. I don’t want to look like this on my 50th birthday next November.  I don’t want to be grotesque and repulsive going into the last third to half of my life. I have to restrict food. I’ve tried the ‘normal’ calorie amounts I’ve been given from the doctor and diabetic dietician, and that doesn’t work…so I’ve got to go lower. I can’t do much exercise because of the issue with passing out when my heart rate goes up or I get overheated, and my knees and spine issues.  So the calories have to go.  A slippery slope for me, so I’ve got to be careful- but I have to DO something beyond what I’ve been doing.  I didn’t look like this before chemo… and I want to lose any remnants of those days.

Losing weight will also save me some time before having to have my left knee replaced (I had the right one done in late 2006, and it was a very unpleasant experience with some complications and ‘dull’ response time by the doc and nurses to a bladder infection). I had to go to a rehab place for the medically defective. It was a good rehab facility- great care, but set up where people stayed in their rooms like a hospital between therapies (no common area), and since I was infective, I was in a private room- not a horrible thing, but friggin’ isolated. It’s not like there was a big risk of someone coming into contact with my pee.   My left knee has unrepaired, and questionably healed ACL and medial meniscus tears, done when I turned over in bed back in 2009- about a week before my closest friend from here in this town died suddenly (following several complications from a KNEE replacement). She’d moved to a different state to be closer to one of her daughters, but we were in contact by phone daily, even when she was in the hospital or rehab.  I was supposed to have the left knee replacement done, but then got leukemia and everything was put on hold to survive that.  Been a weird few years.

I’m frustrated that I don’t feel that people understand why I’m like I am.  I’ve got diagnoses that people haven’t heard of.  I ‘look’ like I’m capable of working, and I miss being a nurse SO much- but too much standing or walking, and the whole heat/heart rate thing = one unconscious middle-aged RN.  I’ve been an RN for nearly 28 years.  I’ve been on disability for 8 years.  But I still keep my license, because I still AM an RN.  I worked hard for that thing.  And I loved working with it…  And those days are done.  When people ask me what I’m doing to get back to work, it hurts- there isn’t anything that can be done by me or anyone else. Some things CAN’T BE FIXED !  SO those perky, blessed-to-be-clueless people need to shut up and go target someone who has some stuff going on that is treatable. I’ve been dealing with much of this since 1996- and worked until 2004- I held out as long as I could.  I fought to keep working.  QUIT asking me if I’m going back to work. NO, I can’t !

I was raised in an evangelical church, and am a born again Christian, without some of the judgmental drama that can go with those two things.  I hate the passive ‘I’ll pray for you’ stuff- prayer is wonderful, and I do it often, but if someone wants to help, some action would be really amazing ! Prayer is about as passive as a person can get and rationalize to themselves that they’re ‘doing’ something– and while I do believe in prayer and that it is a very positive and powerful thing (and pray for people on the news all of the time since I can’t do anything else), it’s not the be-all end-all answer to really being of use to someone.  It’s definitely better than nothing, but it really doesn’t show much in terms of actively supporting and helping someone. Sometimes it’s all people CAN do- and that’s appreciated.  But remember the ‘faith without works is dead’?  I’ve sensed a lot of dead.  I wish I could do more for others, and feel guilty about that.  Not like I know many people around here to be available for… back in the home where my heart is, I could be more useful, even if I’m not that physically ‘able’… I could drive someone to the store, or appointments.  I could water plants when they were gone, or change out cat litter. I couldn’t walk dogs or watch kids… but I’d do what I could.

I’ve contacted my ‘old’ church (from when I grew up and it was an amazingly positive experience) to find out about women’s Bible studies and other things in the past, and have been essentially blown off. I guess I’m not good enough for the ‘elite’ evangelicals anymore. My checkbook may not be deep enough or something.  I’ve tried again, and will hear back after the 31st when the contact person returns. I had really looked forward to going back there when I moved back from Texas.  I found it to be cold and a bit pretentious.  If someone can’t go back to the church they grew up in, where should they go?  Where is the ‘real’ message in that?   It hurt.  There were some really nice ladies (who I’ve known since I was a kid) who invited me to a type of ‘grief’ group, but I don’t want to sit and talk about dead family.  If that works for them, I’m really glad they have somewhere that feels right for their grieving process.  My mom is dead. Sitting in a room with folks who need that type of support doesn’t work for me.  I guess if I want to connect with anybody there, I have to be bummed out.  Not something I’m interested in.  I’m hoping the Bible study that starts on January 9th will work out- otherwise, I’m done trying to get back in to the church I grew up in. It shouldn’t be a ‘project’ just to find somewhere to fit in there.  The singles group wasn’t my bag – I want some ‘study’ group type thing.  🙂

Anyway, that’s a bit of what’s rattling through my head today.  I’m a little less grumpy now.

Fragility and Resilience

There are just some people in life that ‘stick’ in memories.  Even after decades of no contact, and then with a reconnection on FaceBook, they bring back all of the good stuff that they’re associated with. Not just a fun afternoon, but the totality of the experience they were a part of years ago.  For me, that was an incredible experience as a camper and then a summer staff member for a total of 10 years at Timber-lee Christian Center in East Troy, Wisconsin (USA). Even though I went to a ‘solid’ church as a kid, Timber-lee has always been my spiritual foundation. People there live what they believe. It’s not lip service, and it’s not ‘on’ when people are watching only to be turned off when the kids leave. It’s legit.  It was 24/7 immersion in Christianity that was good.  Not the negative stuff that can be associated with Christians, but an authenticity that is hard to find. I couldn’t get enough of the place, and wanted to live there permanently (they didn’t have any openings for full-time campers…).

One of the people I first met when I was 8 years old became very ill this week, and her heart stopped. She was somewhere that provided her with near immediate CPR, and EMS was called. They got her heart restarted, and the ER she was taken to figured out the problem and opted for induced hypothermia (dropping her body temperature) and a coma to minimize any neurological complications (that nobody hears about with CPR). It’s assumed by most non-medical people that when the heart is restarted, all is well. That is the outcome in a very few cases.  Recovery is a process- not an event.

A couple of things have stood out in the four days since this happened.  First, I have learned an entirely different level of prayer.  I’ve prayed as long as I can remember, but I’m not sure that I’ve ever had someone come to mind as often as this incredible woman has, or that I’ve actually pleaded to God on behalf of someone else. I’ve prayed for healing for other people, but this has been different.   My sincerity in the past has been just as strong, and I’m not sure that I can really describe how this is different. It just is.

Second, I’m realizing how important those years at Timber-lee have been.  I’ve always been so thankful for the experiences I had there- whether the week long  sessions as a camper, or the 3 month sessions on the summer staff for 2 1/2 summers.  The people I met there are entwined with the experience.  They can’t be separated, and that’s  wonderful.  When I think of one, I’m flooded with the memories of the other.  It’s a package deal.  The feelings of safety, love, fellowship, and acceptance have never been replicated. Ever.

The fragility of life smacked me in the face four days ago (as it did much more so for those who are closer- her husband, and friends and family).  The experiences at camp have been my ‘go to’ memories to ferret out good days when I was going through rough times.  This week, there is part of that whole picture that is in trouble.  The reports come in daily, and I can’t get to them fast enough. I spread them to other pages where people are waiting for news. And we’re all praying.  There is hope.

I’m not sure I’m explaining myself all that well.  I’m  a bit overwhelmed, and in some ways I don’t feel entitled to that level of emotion, as we didn’t have contact for so long.  But it’s Timber-lee and one of the handful of people that has had an impact on me since 1972.  I even wrote a ‘report’ about my first week at camp when I was 8 years old, and she is in that ‘report’.  I got to see her in July, and it was so great to be back at the camp and see people who made it what it has been in my life.  And now she’s in a coma.

As a nurse, I know the possible outcomes. I worked in a coma stimulation unit at a brain injury rehab center many years ago. I saw some horribly sad situations. But I also saw some amazing stories and recoveries.  The people I took care of had been in comas for many weeks to months before they started showing signs of improvement, and the injuries were often because of external trauma (accidents). The damage had been more extensive, and intense. They started out in much worse shape, at least structurally; many had parts of their brains or skulls removed because of the damage.   My friend has already been reacting well to commands, and her reflexes are good. That gives me much hope for her outcome. Yet, I also know that there are no guarantees.  SO, while I’m thrilled every day with the updates, I hold back because of what I know and have seen. And yet, to the part of me that is still seeing Timber-lee as only existing with the people I knew there still like they were, I can’t allow myself to accept anything less than a full  recovery.  And that’s what I pray for, as do many, many others.  This woman is cherished.

I guess when I remember Timber-lee, I’m transported in time to the age I was then, and the feelings I remember when I was there.  It’s technically just a ‘place’…but it was much more than that to me.  I saw how Christians live in a way that I wanted to emulate.  When I’ve been in situations that were literally life-threatening, my first thoughts  often go back to something from camp.  That’s my feel-good place. It’s where I felt the most freedom to be who I really was during that time in my life.  And, I learned so much from the people I met there- either as a camper or on staff.  It also played a role in why I became an RN.

My friend who is sick is one of those examples of being a Christian that has been a role model, even in the 30 years we had no contact.  Her life has had an impact on tens of thousands of lives as she’s worked at the camp for decades. When I’ve thought of her over the years, I smiled.  When I hear music that she taught the music groups, or camp songs we sang, I smile.  When we’ve had FaceBook contact, I smile.  She’s a ‘feel good’ person.  That’s a quality I respect and admire so much. And she’s a very solid Christian, in ways that encourage and inspire- not judge or demean.

So, this is a hodgepodge of words that may not make sense.  That’s OK.  I just needed to write this.  I’m praying that her recovery exceeds expectations, and she can resume her life with this being just a blip in the totality of her life.  I can’t express what Timber-lee and the people I associate with it really mean to me. It goes beyond just a ‘place’.  The experiences were  heaven-blessed.  So many times the good I got from there helped  get me through some really lousy stuff. I can’t really explain that either, except to say that I felt that the God I saw in the people I met there was more real to me because of having been there.  Maybe that’s it- they showed me God.  They made Him more real.  I knew about God from the time I was very young, and believed in Jesus as a young elementary school kid…but I met Him at Timber-lee, through people like this friend who now needs Him to surround her with healing and restoration.

This one’s for you, MK.