Redefining Normal

As I continue to struggle with some of the medical issues I’ve got, I’m trying to figure out how to maintain my independence, safety, and general medical stability.  Sometimes that’s easier said than done, and on days when I don’t feel as bad, I forget to pay attention to what has become my reality, and I get into trouble.  I know my primary triggers for the dysautonomia are pain and heat (my perception of heat- not what others feel as warm).  Dysautonomia, diabetes (5 shots/day), epilepsy, chronic pain, fibromyalgia, arthritis, bone spurs, degenerative discs (neck, thoracic spine, and lower spine), scars in my lungs from massive pulmonary emboli, one replaced knee, one messed up knee, etc), fluid retention…..  There are a lot of things to have to adjust things for, and sometimes it can be overwhelming.

I have to avoid being overheated away from home at all costs, since I can easily get to the point of passing out.  This involves keeping my body cool enough on the outside (using my ice vest when needed), and avoiding ‘internal’ heat through foods that are too warm.  Any activity that increases body heat or heart rate is no good. So my activity tolerance is pretty dismal.  In the summer, this involves shopping after the sun is down, and not leaving home any more than I absolutely have to.  Ironically, the winter is almost worse since everybody has their heater on, and I don’t tolerate artificial heat well at all. I keep my thermostat at home set around 60-64 degrees, or I get into trouble even being at home.  It’s going to be in the 30s tonight, and I’ve got the air conditioner on… no joke !

Cool and cold foods are much less likely to cause my body to overheat (duh), so I avoid warm and hot foods unless I’ve got the thermostat ‘perfect’, and I’m not already having trouble.  I never drink hot drinks. I have never liked coffee, but don’t drink hot tea, and if I do drink hot cocoa, it has to cool off considerably, which sort of defeats the purpose.  The process of cooking (or even just ‘assembling’) meals is very difficult. Repetitive motion of prepping food is extremely painful, and if it involves using the oven or stove to cook it, I have to be very careful that the thermostat is set low enough to help compensate.  Even stuff reheated in the microwave can be a problem.

Pain is something that is nearly impossible to avoid.  If I’m awake, I’m in pain.  Any repetitive motion sends my muscles into spasms, which can get to the point of causing vasovagal reactions.  I feel like a wuss.  There are so many things I want to do, but it’s just not safe. I need to see my pain doc again and talk about the next step in pain management. The sporadic injections into my spine aren’t helping at all, and the pain medications I have aren’t really that strong, and don’t work that well.  I do use more NSAIDs (ibuprofen, naproxen sodium) now that I’m not on blood thinners, but they don’t do a lot for the deep pain.  I’ve resisted taking anything stronger that the doc offered before. He understands that I’ve worked in the addiction rehab business (as an RN), and have seen some horror stories with detox.  I know that pain medications used as prescribed are very safe. I’m just a chicken…but I have to get over that at some point so I can function at home as independently as possible.  I’m losing some of that.  It’s a little scary to be just under 50 years old, and looking at needing help to get basic tasks done.

I already have mail order for as many things as is practical and available.  It helps a lot to have it just dropped off at my door.  My dad takes the trash to the dumpster sometimes; I still try to do that when I can, so I’m not doing ‘nothing’.  Today, that was very painful- but I got it done.  A childhood friend of mine and I have reconnected, and she has helped with many things- and will help with more if I just ask her…. it’s hard to accept help.  I’m supposed to be the one who helps others. I moved back here to help my dad with my mom, but she died.  I worked as an RN for 20 years, so I could help people.  I don’t want to need help.

I feel like I’m just not trying hard enough, but I’m starting to realize that my body is broken, can’t be fixed, and I have to do whatever I have to do just to ‘maintain’ things at home.  Leaving home isn’t really something I can increase… it takes quite a bit of equipment to be away from home for more than 2-3 hours.  I have to get home before the ice vest inserts I’m wearing begin to thaw too much.  As a twenty-something young nurse, I sure never saw this coming.

I’m thankful for a lot- I have a garage attached to my apartment and a washer and dryer in my apartment.  That helps a lot.  I have a great new puppy, who wears me out, but has  amazing positive energy.  I know things could be  a lot worse; I worked in some rough areas of nursing and saw some pretty tragic situations.  I’m still living at home, alone (which I prefer), and have figured out how to get stuff done, even if it’s not like I used to do things.  I believe that all things happen for some reason.  I have strong faith in God, and I trust that He can use this for something good.  Yet, there are days when it’s hard living like this. My world is pretty much my apartment and my dog.  I still have my dad around, and we’re in regular phone contact, and usually see each other weekly.  I’ve got computer access to former coworkers, and friends.   I’m still in remission from leukemia and I can still keep my mind busy with various things. So things could be worse. ‘Normal’ has changed.  But I think that as people go through life, even if they’re relatively intact, lives change.

At least I’m still around, and I have to make the best of it 🙂

 

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Hold On To Hope, Or Face Possibilities

I’m waiting, along with many others, for news about a dear woman who went into cardiac arrest last week, and is in a coma as a result.  The day they warmed her back up from the induced hypothermia (used to minimize oxygen demands on the brain while healing from CPR), her reflexes were present. The next day, she was following commands to squeeze her husband’s hand, and raise her elbow off of the bed.  That sounded good.  Daily reports were coming in, and while nothing else major was happening, there was a hopeful tone to the reports. Then Sunday, there was no word on her condition. Monday, there was information that she was struggling, and last night, the neurologist had done a test and met with the family early this morning.  When the time is right, information will be shared about what that was about.  As an RN, I can’t think of a lot of ‘good’ since there had been little  positive news for a few days.  I remember working on a neuro floor, and when the docs met with the families, there were major, and permanent decisions to be made. Occasionally, there would be some other treatment option, but not usually.

As I’ve been mulling all of this over for the past week, I’ve had so many emotions. Anybody who was a camper or on staff at Timber-lee Christian Center in East Troy, WI would have been directly or indirectly impacted by this woman. That’s tens of thousands of kids and staff members over the decades she has worked there.  Her talent for developing fun programs to get through entire summers, each one different, is indescribable.  She also has a great sense of humor, and is one of those people who just makes people feel good. Her piano playing ability is remarkable, and even more so, since her left arm is weak- but nobody would ever know that from what she can get a piano to do.  She has been an example of what Christian woman can aspire to. There isn’t an ounce of phoniness in her. She’s the real deal.

As an 8 year old, I first met her. She was in charge of the programming for that first year as a camper. Her talents brought stories from the Bible, and how to live as a Christian to life and made them applicable. I remembered her every year I was there as a camper (7 summers), and then when I was on summer staff, she was someone familiar when I was meeting MANY new people.  I wasn’t always the easiest to have around, but she was always kind and compassionate.

This last July, I got to sit down with her and her husband at a reunion at the camp. I hadn’t been back there for decades, and while it had always been my ‘safe haven’, I hadn’t seen anybody from there since the mid-80s. I’m so glad I had the chance to talk with her, and also to have reconnected on FaceBook several months earlier. She is someone who exudes life.  And now she’s in a coma, and is struggling.  That’s not her.  Oh, she’s had struggles- but she made them work for good.

And yet, I believe in a God who is omniscient.  He knows everything- and His will is perfect for His plan.  Not my plan, or her plan- but His plan.  I don’t know what that is, or why this all has happened.  Physiologically, I understand why her heart stopped and she needed CPR.  That isn’t hard to comprehend. But what is hard to understand is how her being in a coma, and so critically ill, is helpful to God’s plan.  I have to have faith.  I know that one day, I’ll be able to ask God directly, and know His reasoning. I do believe that.  And I have to have faith in the meantime. Sometimes that faith uses a lot of kleenex.  Sometimes that faith can’t see through the tears.  But it’s still faith.  It doesn’t waver, but it also rests inside a very real person with very real feelings.

So, now the battle is this (at least for me- and I don’t believe I’m alone in this)… do I hold out for hope and God performing a miracle? Or do I get myself ready to face the real possibility that she will end her work here on earth, and join those who have gone before her in Heaven?  I have to rely on my nursing knowledge to look at where she is- and ‘she’ isn’t lying in a bed on life support. That’s the logical angle.  That isn’t how she lives. She is a very vibrant and amazing woman. I believe God can use anybody in any state to speak to others, and yet being in a bed isn’t how she has lived.  When I saw her in July of this year- just 2 1/2 months ago- she was racing around the camp in a golf cart, tending to the visitors on the grounds. Smiling. Serving, encouraging, and active.

I can’t imagine what her husband is going through today after the meeting with the doctor.  He is also a ‘lifer’ on staff at Timber-lee.  He forges iron into custom ironworks and horseshoes. Yes, there are still blacksmiths!  Now, he’s faced with an incomprehensible set of circumstances and potential outcomes to sort through. But he seeks God’s will as well.  He seeks the glory of God, regardless of the loss or changes he may also face.

In the end, those of us who believe the doctrines and Biblical principles that are an integral part of Timber-lee know that we will all see each other again, no matter what happens here in this earthly life. We have that promise and confidence in what Jesus did on the cross. That makes no sense to someone who choses not to believe in Christianity as described in the Bible- and God gives everyone the free will to decide that. He doesn’t force eternity- or Himself- down anybody’s throat. For me, it’s a comfort -though I still feel the loss of people I care about in a very human way; those concepts are not mutually exclusive.  Christianity really isn’t about either/or… it’s about more and more.  I’ll get more time with my friend. I’ll get eternity with her. That doesn’t mean that I wouldn’t miss her until then.

I don’t know what will happen. I don’t know the private matters being discussed. I do know that the woman I know is vibrant, and unstoppable. Yet, now she’s suspended in time, in a very passive state. That’s not her.  I will still pray for healing. I will still pray for God’s will to be done (which might mean He takes her). But no matter what, I will never forget her impact decades ago, or even now as she triggers deeper thought about God, and why things happen the way they do… and in the end, she has once again strengthened my faith.

And those of us ‘watching’ can celebrate her life, no matter what.