Introducing Princess “Shelby” Noel Wigglebutt

I finally found a miniature schnauzer puppy !  After 2 months of looking online and in the local newspaper, I finally found a puppy that was exactly what I was looking for.  I had to do a long day of driving WAY outside of my comfort zone with the dysautonomia and joint/pain issues- and it’s only because it’s winter and cold here that it was even possible.  My knees are still not happy- but she is SO worth it.

Shelby (as I call her) is 9 weeks old. She got a good report from my vet, and has been a joy in the 3 1/2 days that I’ve had her home. She has a lot of energy, and is ‘loose’ in my apartment all day (sleeps in a dog tent at night on my bed with me), and is using more energy than she had been, so is having some mild hypoglycemia symptoms. That is common in puppies, and they generally outgrow it. So, to fix that, she’s getting four meals a day instead of three.  She does have several naps during the day, but if I get up, she wakes up and follows me everywhere… one time I managed to not wake her up initially, but she woke up and found me not around, and cried until I called her (she has no clue what her name is yet, but my voice settled her down).

Shelby’s name comes from Julia Roberts character in ‘Steel Magnolias’. The ‘Princess’ part is what her breeder mom called her.  Noel is for being born on Christmas Eve, and Wigglebutt is what her tail does !

It’s been so lonely since Mandy died.  It’s wonderful to have a lively little being in my life again. She’s got a great temperament (and I met her parents, who are sweet dogs as well).  The drive was really hard on the dysautonomia and arthritis, but I’d do it again if I knew she was the end result.

Meet Shelby:

Princess "Shelby" Noel Wigglebutt

Princess “Shelby” Noel Wigglebutt

Shelby

Shelby asleep….

Shelby in one  of her toy bins :)

Shelby in one of her toy bins 🙂

The Night Before Christmas…

…my new puppy was born, though I didn’t know it until today.  My dad was here, and I was going through online ads for miniature schnauzer puppies. Most were either too far away, had something funky going on with their eyes, or some had disconnected phone numbers. Not a good sign.  Then I found an ad that had been posted just a couple of days ago, and I called the breeder. After a few questions, I asked if I could talk it over with my dad and call her back- no problem.

We talked about it for a few minutes, but his fatigue after driving home from Florida over the last several days was catching up with him.  He said we’d talk later.  I called the lady back, and explained the situation, but said I’d be talking to him about me driving the distance to get the puppy on my own. In the winter, I do better, and have plenty of opportunity to stop and rest if needed.  I’d already decided to go by myself- after all, I’d driven over 1200 miles when I moved back here, and while I’m not able to drive very far in just any weather (i.e. when it’s above 50 degrees outside), 35 degrees should be OK.  I got part of the cash at the ATM (will get the rest tomorrow), and made some plans and got the travel crate together.

I talked to dad later, and he agreed; he’s pooped. I told him how I was getting there, and we double checked to be sure he had my cell phone number.  All was well.

My new puppy (Shelby) was born on Christmas Eve- nearly 9 weeks ago.  That was the same day as my last photo of my dear Mandy who died on December 27, 2012.  I like the information the breeder gave me.  And the photos are adorable. Tomorrow, a new phase of my life starts, that will involve patience, some frustration, but mostly a new little life to love.  I’m so ready.  I’ve got puppy teething toys, a ton of stuffed animals, and a new dog bed, along with many other things.

Tonight is my last night in my bed without my new dog.  I’m not sure I’ll sleep !!

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.  🙂

Mandy Meltdowns

My sweet miniature schnauzer Mandy died seven weeks ago yesterday, on December 27th, 2012.  She was my sole companion for all of the years on disability, and absolute joy for the 11.75 years I had her with me.  Most of my human friends are in Texas, and I’ve been pretty much isolated since going on disability in April 2004. But Mandy was always here. We were with each other pretty much 24/7.  The bond was different than with other dogs I’ve had (though I loved them intensely, as well).  She knew my patterns and understood what I told her with an almost creepy accuracy.  My dad commented about that often.  He could tell her to do something, and she stared at him… if I said something, she knew what I wanted her to do and did it.  I miss her little quirks SO much.

The last few days have been really hard for some reason.  I’ve been sobbing when I think about how she just went limp on my lap after a few minutes of altered breathing and periodic looks of confusion. She knew that something wasn’t right. She stopped in her tracks after peeing on her pee pads (this was after she whimpered and had some type of ‘spell’ that was similar to other episodes during her nine months with congestive heart failure).  She actually had the ‘presence of mind’ to go to her pee pads after an episode that was to end her life in the next 15 minutes.  That ‘look’ made me feel that she was confused about what was happening, and so I picked up that sweet dog, and got her situated on her comforter, with a pee pad underneath, and got her onto my lap as I leaned back in my recliner. She had some ‘leakage’ issues when she’d have those spells. I knew that if she was dying, she’d have no control- even though she’d had that brief moment of clarity to run to her pee pads.   She knew something wasn’t right, but she also knew that I was holding her, and wasn’t leaving her to be confused on her own.

That last ‘episode’ was different from others. She’d whimpered and cried when she fainted before, and while that sound was horrific to listen to, she’d snap out of it and become alert fairly quickly. This was different. She woke up, but never seemed to become ‘clear’.  So, I knew that this was going to be the end- whether she died naturally in my arms, or if it went into some prolonged situation that could only be dealt with humanely at the vet’s office. Regardless, I knew I was watching my dog’s final moments.  This was my sole companion.  She was with me every single day during some really lousy stuff, and there was no judgement (about the disability issues) and only love and companionship (during the chemo for leukemia).  My best friend was dying in my arms.

When she had that ‘agonal’ breathing (deep, but very slow, and associated with the dying process), I saw the color of her tongue change.  It became pale.  She was no longer looking at me, but I talked to her and thanked her for being the amazing friend that she had been.  I told her how much I loved her.  But I also told her that it was OK to go.  She’d been through enough.  That’s what I used to do with human patients when I was working as a nurse, and while I’m sure Mandy didn’t understand those words, I had to say them.  I had to let her go.

The previous two weeks had been long and hard, and indicative that things were changing, but she’d been alert, and interested in what was going on.  Even that last morning, she was very eager to get Swedish meatballs for breakfast (she’d become very picky during that last 2 weeks).  But at the very end, I knew I had to say goodbye…to the single being that was with me every single day for nearly 12 years, and the only being that was with me after I ended  up home all day every day on disability.  I have regular phone contact with my dad, but my dog was always by my side.  All other contacts with humans at that point were either medical appointments, pharmacy and grocery clerks once a month, the vet, visits with my dad every couple of weeks or so,   and  package delivery people.  There was also the brief contact with family on Christmas Eve.  That was literally my only contact with people in person…. but Mandy was always there.

When she went limp on my lap, I knew she was gone.  No more struggling. No need to take her to the vet, wondering if she knew what was happening.  And feeling like I was ‘killing’ her (even though I believe in euthanasia for the sake of the dog).  No more of the agonal (or difficult) breathing. No more wondering when enough was enough. No more of the up and down roller coaster of watching her have hard periods of time when she seemed to be going downhill very quickly, but then have her bounce back, and being alert and curious the whole time.

She went naturally. She died in my arms. She knew I was with her.  She didn’t have to endure the stress of a car ride to the vet (it had become difficult for her because the excitement of being in the car made her breathing more labored).  And she would get SO cold, from the marked weight loss of that final few weeks.

 I wanted more time with her.  It was 2:45p.m. when she took her last breath, and the crematory closed at 4:00… I’d called them around 3:00 p.m., and they were waiting. Dad was on his way to drive me over there.  But I just wanted to hold her for a while longer.  She was my only friend that I had contact with other than online.  She was my life.  And she was gone… I just wanted a few more minutes.  Handing her over to the pet crematory staff (who were VERY compassionate and handled her very gently) was horrendous.  Shifting her from my arms to his was agonizing.  She was obviously lifeless, and yet it felt like I was giving part of my life away to death.

I can’t get these last minutes out of my head. I do still remember her quirky, funny times, but losing her hurts like salt in an open wound, in my heart. I knew the end result of canine heart failure, and I knew those last two weeks were winding down to the end… but it also felt like part of me went with her.  Having such little contact with other people (because of the disability and physical limitations) made my relationship with Mandy so different.  And she was special (as I know all pet owners feel about their babies 😉 ). Her understanding of what I told her was eerie and made her like having ‘someone’ here.  Before becoming disabled, my other dogs were amazing parts of my life- and I loved them deeply…yet I had contact with people at school and/or work during their lives.  Maybe I became too dependent on Mandy.  I don’t know.  I just know that this time was different.

I’m going to get another schnauzer; I’ve got a breeder in mind, and am awaiting news that their mama schnauzer is pregnant.  It’s really hard to wait, but I really like the breeder and photo of one of their past puppies.  In the meantime, I’m getting things ready for having a puppy again.  And, I go through ‘Mandy Meltdowns’ – more so the last few days.  Each day, something reminds me of what is missing.  Then I replay those last minutes, then weeks, in my head- and dissolve into tears.  I’ve lost two other schnauzers over the period of time from when I was a kid, through my late 30s… and this is different.  Yes, I missed those dogs a lot, but things got better over time; I’ve never forgotten them or their individual personalities (one was nuts, the other smart and social 🙂 ).  It seems like I’m stuck, even though I’m looking forward to the new puppy.

I just miss my sweet buddy.  She made my life so much better.

Mandy at 11 years old, 2012

Mandy at 11 years old, 2012

Mandy at 8 weeks old- summer 2001

Mandy at 8 weeks old- summer 2001

Mandy's final resting place. She is with her 'big sisters' and will be buried with me one day.  I still can't get rid of her pillow bed.

Mandy’s final resting place. She is with her ‘big sisters’ and will be buried with me one day.
I still can’t get rid of her pillow bed.

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.

 

 

Blood Sugar Dump And Falling Into Walls

I didn’t feel that great yesterday.  Nothing specific, just a headache (which isn’t unusual for me at all), some queasiness, and just not feeling right.  So, I limited what I ate to jello, mashed potatoes, and other bland foods that provided some carbs to deal with the basal insulin dose I take twice a day.  The bland food helped the queasiness, and I figured I’d had enough carbs for the insulin.  I’m usually pretty good with my diabetic and  RN knowledge (nearly 28 years since graduating from nursing school; 20 years as a working RN taking care of a lot of diabetics, 17 years as a diabetic, and 8+ years of being disabled and learning a LOT from a patient’s point of view). I figured wrong.

I went to bed around 6:30 p.m.  Normally, I’m up until 2:00-3:00 a.m., easy.  I’m a night owl. And don’t talk to me before noon.  But, I was really tired, so I decided I’d either go to bed, sleep for a few hours, and then resume my normal night owl schedule, or I’d sleep straight through. I didn’t care.  I was still awake at 7:00 p.m., so decided I’d just take my nighttime meds (including my main dose of Lantus insulin) and be done with it for the night.  I crawled back into bed and fell asleep.

At 9:40 p.m. (it’s written down in my blood sugar log) I woke up to go to the bathroom, but felt really odd.  After falling into the walls walking to and from the bathroom, it dawned on my that I needed to check my blood sugar. It was 37mg/dl; I double checked it and it came back at 40mg/dl. It shouldn’t go below 70mg/dl, and my endocrinologist doesn’t want mine below 80mg/dl because of my history of epilepsy; I’m prone to seizures anyway- no point in adding hypoglycemia to the risks.  I was still with the program enough to grab one of my tubes of ‘gel’ candy (‘Squeeze Pops’ – cheaper than products marketed to diabetics, and tastes like Jolly Rancher candy, but in a tube, and a gel consistency). With some of that on board, I got some ginger ale. I checked my blood sugar about every 10 minutes until it had settled in the 90s (took about 30 minutes).  That was ‘safe’ enough to go to bed. I knew I needed a fat and protein source to keep from having rebound hypoglycemia, so justified a Reese’s Peanut Butter Cup 🙂  I was still really tired, but at least didn’t feel like I was having for force myself to stay conscious. That was better.

It’s really important to not ‘just’ do the simple carbs, or the hypoglycemia WILL come back.  I’ve been treated in a local ER, and they are clueless about the protein/fat source after getting the blood sugar back up. One time when I’d been brought in by ambulance for hypoglycemia, I was sent to the waiting room to wait for a cab, and was told the cab would be there in 45 minutes. The basic instructions for hypoglycemia are to  have a snack if the next meal is more than 30 minutes after treating the low blood sugar episode.  That’s ‘diabetes 101’ for lay people, yet the genius ER nurse was either clueless or just didn’t care (typical of that facility’s ER). When I was waiting for the cab, my blood sugar went down to the 50s again, and I told the triage desk person. She told me that since I’d already been seen, one of the nurses would talk to me IF she got time. I was safer in the cab going home.  It was really pathetic, and there’s no excuse for them.

My endocrinologist had prescribed a glucagon kit to me somewhat recently- but I live alone. Glucagon is designed for someone who has already lost consciousness, and requires someone else to mix the syringe of sterile solution with the little vial of powder, mix it up, pull it back into the syringe, and ‘shoot’ the person who is out of it.  I’m not sure how that is supposed to help me, except that I’ve dropped to the 30s before and couldn’t get it to come back up, while remaining alert. (I ended up calling 911 for that one, and getting IV D50W- that stuff feels awful going in)  I guess I could shoot myself.  Glucagon can be given under the skin (subcutaneously) or into a muscle (intramuscularly), so basically any good dart throw at the person will work.  I could do that. My outer mid-thigh would probably be the best place to aim for… a fair amount of real estate for a blurry eye and shaky hand.  But the kit I’ve got right now is expired by a month. It would probably still work, but last night, the edible carbs were working. I need to call the pharmacy for a refill on the glucagon….

For those ER nurses (and others; I’ve given it a few times working on a med-surg floor) who have given D50W, here’s a little inside information. The stuff doesn’t feel good.  It causes a strange warm feeling, and a feeling of needing to go to the bathroom NOW.  It’s unpleasant. It can also cause dehydration, depending on how high the blood sugar goes, with frequent urination and hyperosmolar  diuresis (frequent peeing from concentrated sugar in the blood).  Knowing this, and offering to help someone to the bathroom would be nice.  Go a little slow pushing the stuff- a few extra seconds isn’t going to cause brain damage.

It’s also important to realize that the half-life of D50W is dependent on the degree of hypoglycemia and the individual patient. Once it wears off, the blood sugar drops again UNLESS there is something to help prolong its effects, such as fat and protein.  Peanut butter and crackers, a candy bar, milk and crackers, or other protein/fat source is needed.  That’s also the reason that those items are not good for treating the severe low blood sugar. For ‘borderline’ or mild hypoglycemia (above 60mg/dl those will probably work OK… but always listen to facility policy if you’re treating a patient; if something goes south, that will be the criteria used to judge you).   The blood sugar will not rise quickly with protein and/or fat in the item being used to treat it.  Candy bars are NOT good ‘first aid’ for hypoglycemia, and will delay return to normal blood sugar because of the fat and protein. Once the blood sugar is raised with simple carbs, it’s necessary to give a fat/protein source- not before.

Anyhoo… I survived the night.  I hate the feeling of having low blood sugar, and last night included balance problems. Had the walls not been there, I would have hit the floor, which would have been bad news for my knees.  I’m not feeling that great today (same queasy, fatigue stuff as yesterday), but know to check my blood sugar more often today.

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.  

My Friend Gretchen

I moved back to my hometown in late 2002, and left my friends of 17 years back in Texas. I got a nursing (RN) job fairly quickly, but then the dysautonomia and seizures made it impossible for me to continue working, even after finding a ‘desk job’ as an RN. I passed out too often to be employable. SO, I was at home. People here don’t keep in touch with ‘throw away’ co-workers, so I didn’t really have friends. There was nobody to list on any ‘who to call’ paperwork, except for my dad. So I was at home pretty much all the time. I had some really nice neighbors. ‘L’ lived directly across the parking lot from me, and Gretchen, and her daughther ‘E’ lived upstairs from ‘L’.  I became friends with ‘L’ first- mostly since I saw her the most, though I saw Gretchen periodically, and ‘E’ when she was home from college.  ‘L’ eventually moved to a condo, and Gretchen moved ‘L”s apartment downstairs.

For a while, we saw each other in the parking lot, and also got used to each other’s routines. She knew when my vertical blinds had been closed too much, and I knew when she was grading papers at her dining room table. I later found out that when she thought I hadn’t been seen for ‘too long’ she’d call the apartment complex office to see if they’d heard anything- to be sure I was OK.  I spent a lot of time in the hospital for sometimes weeks at a time- so she’d check up on me. She’d see my dad checking in on my dog (Mandy), and since they knew someone in common, they’d chat.  Gretchen taught 4th grade for many years in a neighboring school district.  Eventually, we talked more. I’d see when her grandson (first grandchild) was brought to see her when he was tiny, and other times when her daughters (‘A’ – the baby’s mom, and ‘E’, the college student) visited.  Being on disability, and home the vast majority of the time, afforded me a lot of time to see who was coming and going.  We always talked when we saw each other, but it was more ‘parking lot neighbors’ kind of stuff.

I forget which one of us had a knee replacement first, but that gave us something in common. We’d commiserate over the rehab process.  Then Gretchen started having other health issues, and also had to go on disability.  I understood what it was like to have a profession taken awayIt’s not the same as retiring. It’s being robbed of something that is truly loved, and having no way to get it back. It hurts.  I ‘got it’.  We started talking more, and becoming actual friends. If she needed me to go get her car when she’d have to go to the hospital, I was glad to help out.   I don’t consider a friend someone who is paid to be in the same place at the same time (that’s a co-worker- and friendly co-workers are incredibly important, and can become friends). Someone who is paid to provide a service isn’t a friend- though they can be friendly. To me, a friend is someone who shares common interests and is loyal and fun to be around.  Gretchen was a friend.

She decided to move closer to ‘A’ and her son-in-law  in another state, which was really hard, but I was also happy for her. She had a grandson she adored, and a granddaughter on the way. She was so excited.  ‘E’ was doing well in school, and she was so proud of her.  And we still had my unlimited phone plan (I had a landline; she had her cell phone), so keeping in touch wasn’t a problem. It would be different, though.  I could call Gretchen when she lived across the parking lot and ask if she’d eaten yet… her reply was “I’ll get the car.”  And off we’d go in literally less than five minutes.  She’d show me her latest treasures from the Target discount racks, and be so excited. I think she went to Target at least 3-4 times a week; sometimes I’d tag along.  I haven’t been able to go there since she’s been gone…  She called me when she couldn’t get her quilts in a ‘Space Bag’, and we’d fold and shove and vacuum until the thing worked.

Gretchen had had another knee replacement and began having complications. She had fallen, and also had some tendons fall apart and an infection.  She had several more surgeries, and we’d talk daily about something, either in the hospital or in one of the rehab centers (she knew I’d worked in rehab and nursing homes as an RN, so I knew what was acceptable care), as well as during TV shows we both liked.  It was a rough time for her.  She did come back to this town for a month not long after her granddaughter was born, and ‘A’ and her family had taken a trip.  We did a lot of thrift store shopping for the grandkids (we packed the Jeep absolutely full), and had fun just goofing off together.  She had an infection brewing in her leg, and we’d gone to Walgreens…both of us had forgotten our glasses. Fortunately, she could see close up, and I could see distances, so between the two of us, we got some panty liners to put on her leg to sop up the drainage from her leg. It was a bit unconventional, but it worked.  We just laughed about our combined visual deficiencies, and how we made it work 🙂 We always found something to laugh about !

After she had the last surgery, she was in a long-leg cast, but Gretchen wasn’t one to sit around.  She wanted to be mobile ASAP, and didn’t let a wheelchair or cast keep her from moving herself from chair to bed, or wherever she needed to go (like in front of her computer to order stuff for the grandkids and her daughters).   She’d been through a lot after the last knee replacement, and it seemed like things were going well.  She was going to be by herself one weekend morning, and she’d asked me to call her just to see if she was OK- and I had no problem with that; we talked all the time anyway (or she’d e-mail me; I just found a few of her old e-mails that had been saved the other day… kinda freaked me out). 

I called as planned, and got no answer. I knew something was going on- ‘A’s home phone had multiple lines; even if someone was on one line, another would be open. And, they weren’t supposed to be there. Gretchen was supposed to be home alone. Something was wrong.  I tried several more times, and was trying to figure out what to do if I couldn’t get ahold of her.  And then ‘A’ called me. I knew before she told me.  Gretchen had died.  They’d found her on the floor that morning.  Whatever happened had been fast.  She had some other medical issues, so there were very plausible reasons for a sudden death… and it was sudden and unexpected.  It was later found that she’d been on the computer as late as 1:00 a.m. that morning; she was found before 8:00 a.m., or so.  I was stunned.  My friend was gone. My friend’s daughters, son-in-law (who she also adored), and grandkids had lost an amazing part of their family.

Since then,  twin granddaughters were born less than 2 years after Gretchen died. She would have been so excited and  having so much  fun with all four of those beautiful kids.  I keep in touch with ‘A’, and her husband, and ‘E’, which has been great.  I see the updated photos on FaceBook.  I know Gretchen would be so proud of all of them.  Her heart was so big, and she loved them all so much.

I don’t think Gretchen ever met a stranger, she was just one of those people who was kind and really cared about people. She got a bunch of kids’ hats, mittens, and socks when we’d go thrift store shopping for kids in her class who didn’t have much.  She thought about what other people were going through when she had a lot of her own stuff going on. But her family made her light up more than anything.  I was so angry that she was missing out on them… on those incredible grandkids growing up, on ‘E”s life after college and grad school (and that she’s working for Target !!), the twins (that she never knew about), and so many of her friends and her former students.

But I got to know Gretchen for a few years.  Very few people have been in my life for such a relatively short period of time and left such an impression.  She was a real friend. I’m lucky to have known her. ❤

Another Season of Dysautonomia

It’s so frustrating to be at home watching a movie, and begin to feel the familiar feeling of one side of my face being on fire, my heart rate being erratic, and then the general ‘unwell’ feeling.  I’m at home !  I’m in charge of the thermostat (at 64 degrees).  I’m not moving around when watching the movie.  The film (‘Flight’ – great film about addiction- NOT primarily an airplane suspense film) had to be the trigger.  The autonomic reactions to the various ‘adrenaline’ kicks in the film set me off… and there’s nothing I can do about it now.  A quick glance in the mirror to confirm that the left side of my face is nearly purple-red, while the right side stayed the ‘Midwest winter pale’, and I know what’s going on. The dysautonomia is acting up. Again.  But, I’m not going to stop watching movies or just ‘living’.

In the beginning of the dysautonomia, medication bought me eight years of manageable and employable life.  It took some time to get the right ‘cocktail’ of beta blocker, anticonvulsants, and benzodiazepine, but they worked. It was great! That was a long time ago. But the last few years I worked were pretty dang good.  I’d have occasional ‘spells’, and they were annoying- but my ‘good days’ far outnumbered my ‘bad days’.  I’ve been disabled for nearly 9 years now.  And things have been getting progressively worse.

I’ve had to shave my head to eliminate the source of heat from having thick hair. I’m not kidding. I get the #1 blade on the clippers at the hair cutting place.  The next move is to go to a barber for a straight razor shave.  Losing the hair has helped somewhat, but I’ve got to face facts. I’m getting worse.  I’ve talked about the ice vest before- and it has been extremely helpful.  Without it, there are MD offices that I couldn’t tolerate; their thermostats are set for tropical birds, not humans, in my thermo-biased opinion.  My next option was to be calling ahead to see how things were running as far as delay time in the waiting room, and then sitting in my car in the parking lot (with the AC on), and have the receptionist call me on my cell phone when it was actually time to see the doctor.  The ice vest has helped with that.  I’ve also got ice ‘bandanas’ – one type has actual ice packs in it, and the other is essentially  getting a bandana wet and letting it evaporate.  The ice pack ones do help, but don’t last long, so I have to keep changing out the ice inserts.  I haven’t tried the evaporation one yet… it is visually unimpressive.

People think that winter would be easier. Well, if people didn’t turn their heat on, it’d be wonderful !  But ironically, it’s worse.  I can’t depend on different places keeping the temperatures the same, so it’s a crapshoot as far as how I’ll tolerate being indoors away from home from one place to the next.  I wear the lightest weight coat possible, and remove it immediately when I get somewhere. The ice vest is with me unless I’m going to be in the car the whole time.  I’m only away from home for more than an hour about once a month, to do my main grocery shopping when I get my check.  That finishes me off for the day.  If I’m going somewhere for more than 2-3 hours (once or twice a year- usually Christmas, and maybe one other time), I have to pack the extra bag of ice vest inserts, the cooling ‘reusable dry ice’ packs to keep the inserts activated, and the ice bandana refills. It weighs about 25 pounds or so when it’s fully packed, which then requires the rolling walker since I can’t maintain my balance carrying the ice ‘chest’ and my purse.  Then there are the ‘as needed’ medications to regulate my heart rate and/or blood pressure, water to take meds and stay hydrated, stuff for blood sugar (glucose source and insulin), other diabetic supplies and meters, and my battery operated hand held fan with extra batteries.   Nothing is simple.

I recently found out that the ice vest inserts aren’t allowed in airplane cabins, since they are actually liquid when they ‘thaw’.  The company had enough experience with various airlines to know the TSA issues. I’d need the full pack for pre-boarding time in the terminal, as well as any time in the air. I didn’t have anywhere I needed to be; I just wanted to know the options.  Flying isn’t one of them.

When I’m at home, I can maintain the temperature fairly well, unless my autonomic system is given a swift kick from something I see in a movie, on TV, or even read online. If ‘fight or flight’ is triggered, I’m going to have problems with my heart rate. If I don’t get that under control fast enough, my blood pressure will tank, and I’ll pass out.  It’s a slow dance with everyday life.  And no two days are the same. Triggers are similar, and there is some consistency- but if I’m also tired and/or in pain, stuff gets dicey faster.

But I’m fortunate.  I’m in a safe apartment, and I’m still able to live independently.  I’m not the best housekeeper in the world, since any activity affects heart rate, but I’m slowly getting some things done that had been mucked up by the fatigue of chemotherapy (for leukemia; I’m in remission).  A friend is helping me get stuff taken out of here that I want to donate to a thrift store (and get OUT of my space), and that’s helping a lot.  I’m working on some sort of ‘paced’ vacuuming and dusting.  I’ve got a network of cobwebs that look like miniature ziplines going from corners of rooms to bookcases. I wonder what travels on them…. eek !

So, another season means shifting how I do things and getting used to another aspect of dysautonomia as things get less stable.  Something else becomes another thing to work around. There’s another cooling gizmo to try.  And a list to take to the neurologist for the next visit, to see if more medication adjustments are needed (not fun).  In the twenty years I worked as an RN, I never heard of dysautonomia. I’d heard of autonomic dysreflexia (which is a type of dysautonomia), but nothing along the lines of POTS, neurocardiogenic syncope, or other forms.  Whatever it takes to stay conscious and out of the ER and/or hospital is worth trying. Staying educated is extremely important since most ER docs and nurses aren’t all that familiar with the forms of dysautonomia, if they’ve heard of it at all.

I miss my old life. I miss being a working RN. I keep my license active and do my CEUs for license renewal; I don’t  ever want to have to say I was an RN…. I am an RN.  I just have to keep myself from totally falling apart as best as I can.  With changes in how my body functions, and different medications I’m on, I have to stay fairly up to date with drug interactions and functional adaptive equipment.  I miss being useful.  But, I have to focus on what still works.  I also am thankful that I’ve got the ability to blog, and meet others who, unfortunately, know exactly what I’m talking about when I describe something.

 

When I Wasn’t Me

For the most part, I’ve dealt with the rape (January 10, 1987- Austin, TX) relatively well. Initially, there was a lot to deal with to prepare for the trial, and after that I just tried to get back to ‘normal’ (nothing is ever the same after being raped).  I coasted. For two decades.  I knew that Numbnuts (what I call  the ‘being’ who raped me) would be coming up for parole review in 2006 (? I’d have to dig up the files I’ve got for the exact date).  I had been seeing a therapist to help deal with being on disability, and she and I agreed that seeing someone who dealt with rape and sexual assault issues would also be helpful.  So I did.

During this time, I was also on some medications for the chronic medical issues I’ve got, and had some interactions that took a long time to get figured out. Between the weird physical stuff going on (medications and diagnoses) and the stress from the parole review, I got really batty. It was frightening and confusing, and made me a horrible client/patient to have to deal with for any therapist.  I had been in therapy before, and seldom called a therapist after office hours. During the ‘crazy year’  or however long it was, I wore those two therapists o.u.t.  I feel horrible about that; they were both very kind and compassionate. I was a mess.  I didn’t know that the medications (particularly a muscle relaxant combined with my other meds) were having some of  the effects that were going on, and part of that included increased ‘panic’.  I’d actually have mini-strokes from my blood pressure dropping too low, and was constantly in the ER (and very disliked by the nurses and MDs there- they didn’t figure out the medication thing either).  I’d lose the ability to swallow normally, and my balance was shot, which also stirred up the intense anxiety. It wasn’t unusual for my blood pressure to be in the 50s/30s….at home alone.  I’d freak out- thinking it was from all of the chaos going on with being on disability, and the loss of my life as a working RN, as well as the stress of the parole review.  I thought it was all in my head…and it wasn’t.  There were times the therapists called 911 to come to my apartment and get me.  Sometimes, I’d be passed out when they got there (I don’t remember what all was going on- or how they got me to unlock the front door…..?). I woke up in the ER many times, trying to remember why I was there.

I actually figured out the problem with tizanidine (muscle relaxant) and the other medications myself, and once I talked to my primary doc and changed to a different muscle relaxant (for fibromyalgia), the weird TIAs (mini-strokes/transient ischemic attacks) and many of the blood pressure plunges just plain stopped (with the dysautonomia, blood pressure issues are just part of life). I already had some scarring in my brain from the TIAs.  By then, those two therapists had turfed me to someone else.  And not long after that,  I had multiple severe blood clots in my right lung, and had to deal with that… but the memories of those many, many months of being so ‘not me’ aren’t good.  It’s all very detached and just weird.

I’d wake up (or never get to sleep) and be in a bizarre unprovoked panic that I couldn’t deal with, and I’d call one of those poor therapists either late at night or extremely early in the morning, to help talk me down from wherever I was.  I’d be so spaced out, but still absolutely unglued and removed from the fact that I was safe where I was- nothing was actually happening to me.  The years of shoving the rape to the side and the new crazy anxiety were life altering if I hadn’t already been on disability for physical disorders (including seizures and dysautonomia that caused problems with losing consciousness and being very foggy -sometimes when I’d be on the phone with one of the therapists). Other times, the seizures and/or dysautonomia happened first (there were times when I didn’t know which was which- I’d just wake up exhausted and more spacey), and I guess  I’d call in the middle of the episodes.  I don’t remember now exactly what was going on that I called, other than remembering months of weird panicky episodes that were very uncharacteristic of me.  And being a therapy client from hell.

Prior to the parole protest/review period, I’d spent a fair amount of time becoming a rape survivor and ditching the rape ‘victim’ title. I hate the ‘victim’ role in myself and others.  But I sunk way back into the victim role. I couldn’t stand that regression.  It reminded me of earlier times after the rape, and I wanted distance from that.  Some of the emotional upheaval was somewhat expected, I think. For twenty years, Numbnuts had been contained, and the possibility of him getting turned loose was terrifying (even though I knew consciously that it was a remote chance he’d ever find me).  I knew that there would come a time when the TX Department of Criminal Justice would have to turn him loose, because of mandatory release times…but I wanted it prolonged. After many letters and copying the many old newspaper articles to send to the parole board, the initial parole review/release was denied.  By then, the medication changes had been made, and life settled down.  But so much was still a fog during those bad months.

I was a really ratty therapy patient.  The medications were a big part of the physical reasons for the amplified anxiety.  The reminders of what Numbnuts had done to me were oppressively  vivid.  The way my life changed after the rape (and how differently it all turned out from my dreams and ‘expectations’ of a family of my own) was also in my face.  A  lot was going on.  But I’m not sure I really accept that those reasons are what caused so much to fall apart, and drastically change my ‘normal’ life (on disability) to one of childlike neediness (I’m repulsed writing that).

In the years since then, Numbnuts has been back in prison, after more protest letters. I’ve survived a very aggressive form of leukemia and 19 months of continuous chemotherapy of some form.  I’m dealing with significant diabetic issues and blood sugar control problems post-chemo.  And I’ve done it without therapy, and no freaking out in the middle of the night.  I still have seizures. I still have dysautonomia, that actually seems to be getting worse from the standpoint of heat intolerance (I had to shave my hair off; I can’t tolerate having heat from hair) and activity intolerance.  I can’t leave home without an ice vest to prevent overheating.  Other physical issues aren’t good.  And yet, I keep going on my own.  Blogging helps. It’s some sort of contact with someone, somewhere.  It’s ‘open’ 24/7, and only ‘bothers’ those who choose to read it. 🙂