People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle of (usually) legalistic Christians.  It’s sad.  Several of these people are folks I’d hoped to reconnect with, or at least get to know better.  But when interactions with them actually trigger the heart rate abnormalities and changes, and other dysautonomia symptoms, I can’t have anything to do with them.  😦

I love the Lord with all I am.  I try to look at things with a non-judgemental view, and realize that I’m only responsible for my own actions.  I’m also supposed to be a representative of Jesus, and He Himself said that He is love.  Love doesn’t have a place for hate, rudeness, impatience, unkindness, abruptness, superiority, pride, or anything else that pushes others away.   I feel like I fail that because of not being able to physically tolerate hostile and confrontational people.  I don’t like that my life is better without some people in it, and for that ‘all’ I can do is pray.  Being sick because of them helps nobody. 

I see so much hatred for our President.  That saddens me.  I don’t have to like what he promotes, or believe anything he believes. But promoting and spreading unkind words doesn’t reflect him  nearly as much as it does my own character.  I’m supposed to pray for him as well.  It’s the most powerful thing I have for those who disregard what I believe… and just because I don’t agree with some things doesn’t mean that I disagree with everything.  I don’t claim a political party… I don’t identify with any of them because of the extremism, which always repels more than it engages.

I see so much judgement for those who aren’t Bible-thumping, legalistic Christians (BY Bible-thumping legalistic Christians).  I believe in the Bible very strongly. But I also believe that I don’t know a whole lot more than what I do know.  Because of that, I don’t feel like judgement is my right.  I believe that a Christian is supposed to represent Christ, and not be judge, jury, and executioner for people they don’t know.  I can only judge myself.  Each person will answer to God one day… not me.  I don’t believe in legalism. I believe in a relationship with God that is my own. I can’t live someone else’s relationship with Christ.  I can’t determine who is ‘enough’ of a Christian.  I’ve only walked in my own shoes.

I see so much condescension and disrespect online. Some people I know, but most I do not, and am thankful for that.  I can still pray for them.  I don’t have to like someone to wish them better than what they offer me.  I have had to block some of these people from my life because of the physical reaction to their apparent demeanor in whatever way they’ve communicated with me.  A huge part of communication- the non-verbal- is missing from anything written.  I don’t understand why some people can say things I strongly disagree with, and I don’t become sick, while others leave me needing medication to regulate my heart rate.  Maybe it’s because I’ve heard their tone, general demeanor, and know their personality well enough to know they typically communicate with kindness and respect.  I don’t know.

There are a few people who have been SO personally ‘combative’ in how they interact with me.  One refers to me as ‘human debris’, and has been blocked from my life for several years. I wish him/her well in his/her life, but he/she’s too toxic to have anything to do with. There is another person who comes across as generally condescending in a bizarre way.  He/she also has some indescribable quality that pushes me away. I don’t like that I feel that way, yet I can’t control the way my body responds.  I’m not proud of that. I’ve tried to form some sort of relationship in the past, but there’s a huge wall.   Others who have pushed my body past the limits of being physically stable are those who have been friends of friends on FaceBook… unfortunately, their hateful combativeness with any interaction ended up in deleting the friend (at least on FaceBook; with some, there is still e-mail contact away from the venomous ‘friends’ of theirs.  IF someone had talked to someone I actually knew like that, THEY would be the one cut loose.  I won’t tolerate attacks when something is on a page with my name on it.

There are others who condemn someone very close to me for things that they may have heard about, but got either a biased report, or just enjoy grudges. The people who were there are not nearly as hateful as those who were not.  I will stand behind this person any day of the week.  He/she has always had my back. Has he/she annoyed me at times? Yep.  I’m sure I’ve done my share of being annoying.  (Anybody want to cast the first stone?)  My mom was very hard to live with.  She taught me that appearances and my weight determined my value as a person, and treated me as such. (In her own weird way, I know she loved me, but she was very damaging; I still love and miss her).   But, that is always blamed on my dad- by someone who wasn’t even there.  There are a lot of judgmental eyes on the most outwardly “Christian” side of the family… and that saddens me.  I had no idea how deep the hate ran until I moved back here, hoping to be closer to all of my family.  Evidently, they have no need or desire to move forward and be forgiving- or have anything to do with me, because of their feelings about my dad. (Not all, mind you…. but enough to make things difficult). 😦

Anyway, dysautonomia isn’t just about the physical limitations of standing or sitting too long, being overheated, or having pain push me over the edge. It’s also about being triggered emotionally,  while having all of the cognitive parts of the interaction being very rational, but having my body become ill.  It’s incredibly embarrassing.  I have medication that helps to some degree, but prevention is always better.  And sometimes prevention means avoidance.

I will always wish those people well.  🙂

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.

Nobody ‘Deserves’ AIDS…

I was a young nurse in the late 80’s when AIDS was really exploding.  I’d hear some really snarky comments about ‘well, those guys deserve it’.  Really?  Looking back, with more years of experience and observation under my belt, I’ve got some questions about other people who may have deserved their ‘end’.

Look at the number of celebrities who have died from drug and alcohol abuse/addiction.  They must have ‘deserved’ it, eh?  John Kennedy, Jr.- risky flying conditions, he must have deserved to go down, too.  The guy who came up with the Atkins diet- he slipped on ice, fell and cracked his head a good one, and died as a result.  Must have deserved that.  You think they have nothing in common? Well, consider this:  all high risk actions have high risk consequences. Period. 

I grew up in an evangelical church, and know the stand on homosexuality from that arena.  There was no looking at the person aside from the actions that caused some to contract AIDS.  I got to know some of the AIDS victims (and yes- they were victims of a disease that is incredibly cruel).  Not everyone who got AIDS back then (and certainly not now) was gay. And even the gay guys deserved some compassion.  Hey, church- love others, right? Or just ‘some’ others?

I’ll never forget one guy; he’d been with us for several weeks, and was deteriorating.  The family wanted him to be ‘comfort care’, no heroics; the doctor wouldn’t write the order.  Now this guy was lucky to have anybody around at all. Most of them were alone after all of their ‘friends’ and ‘family’ bailed out on them after their diagnosis. The nurses were their only contact with other humans.  Anyway, one night this guy stroked.  It was bad. The doctor still wouldn’t write the ‘Do Not Resuscitate’ order, so if he had started going south (even more) we would have had to ‘code’ him.  I talked to the doctor, who was great with AIDS patients, and normally very realistic with prognoses. He still thought this guy would pull through, at least this time. The nurses knew he hadn’t had a seizure as the doc thought; the period of symptoms after the ‘seizure’ had lasted too long.  The night after the stroke, this patient started to look worse (hard to do).  His nurse that night was doing all she could to keep the guy from trying to take his last breath. There’s not much to do, really , but hope- and try nudging the bed now and then trying to stimulate a breath.  The family was pleading for us not to do anything, and the charge nurse was on the phone to the doc, letting him know that we were going to have to proceed with a code very shortly if he didn’t give us the order to let him go in peace.  Well, it got worse, and his nurse was to the point of putting a back board behind him (a hard, thick plastic board that provides a surface that allows chest compressions to ‘work’), and I was grabbing an oral airway (to keep his windpipe open until the code team got there and put a tube into his lungs)…we were literally seconds from starting a ‘Code Blue’.   As his nurse and I exchanged helpless glances, the charge nurse came in and said “We’re done.”, waving the written telephone order in one hand.   Everybody in the room exhaled a huge sigh of relief.  The patient was pronounced dead within a minute or two. And the family was the one around him instead of ‘strangers’ pounding on him when he took his last breath.  I still have a basket that the family had left full of candy…reminds me of him. That night was one that haunted me for a long time. I was 24 years old, and learning some really intense lessons.

Then there was the heterosexual guy who was in bad shape with AIDS.  He wasn’t going to live (as was the case with virtually %100 of AIDS patients in the early days).  His wife had contracted AIDS  from a blood transfusion after giving birth to their baby.  The wife and baby were already dead.  Blood supplies are tested now; they weren’t back then.  Her high risk behavior was to give birth. His high risk behavior was to love his wife in a faithful relationship.

The guy who was transferred up from ICU was really sad.  I was helping his nurse get him settled in the room. We were adjusting blankets, the TV, and making sure he had the urinal nearby. He couldn’t speak well, but nodded when he understood what we were saying.  Very pleasant guy, with considerable AIDS related brain damage.  Anyway, his nurse and I had finished getting him settled, and left the room. We had gotten about six feet down the hallway when we heard him cry out “Oh, no. Oh, no.”, so we immediately u-turned and went back in to the room.  The patient had wet the bed. He didn’t have the ability to react to the need to urinate and reach for the urinal anymore. When we got him up to the chair by the bed, so we could change the linen, he kept saying “I’m so bad. I’m so bad.”  It was heartbreaking.  He was so ashamed.

People can be all judgmental all over the place.  But be sure to include everyone on that list. Don’t just isolate one sin, and ignore the rest in your wrath and condescension.  We all needed Jesus to keep us from eternal damnation.  I don’t see anybody around me now who even comes close to having the right to damn someone for their actions.  If you do, there’s a preacher in Kansas you might enjoy.  He’s at a church with ‘Westboro’ in the name.  You know- the bunch that pickets military funerals?  For my fellow Christians, I’m not asking anybody to put blinders on and ignore the Bible. In fact, I’m asking you to live it.  Hate is a choice.  But so is love.  If Christians won’t step up and help those who really need the love of Christ, who will?  Nobody deserves to suffer, and everybody can be saved.  If the first thing you think of when you are reminded of a particular group of people is ‘sin’ and some form of judgement, then love isn’t the first thing on your heart.  I’ll pray for you.