“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?

 

 

 

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !

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.

 

 

Suicide Attempt: Those Who Knew Never Asked…

…why I attempted suicide in September 1982.  I later found out that it was a big secret from  family (or close friends) who seemed like they’d be obvious to inform (as in why I’d suddenly dropped off the face of the earth and was no longer at the University of Illinois, Urbana-Champaign campus).  And, for the most part, it seemed  like nobody really gave a rats tail.  I did have an uncle who had visited me at the psych hospital the semester before, God bless him.  He wasn’t afraid to see whether or not I was drooling in a corner somewhere (I wasn’t – in fact, back in those days, I was downright intact compared to many there, and it was a private facility in the days where  you either went to a state hospital – like ‘One Flew Over the Cuckoo’s Nest’- or to a private facility that was essentially a hotel with nurses and a lot of pills; there were no ‘treatment centers’).  There was the friend of another uncle who befriended me (strange situation).  But that was the extent of asking me WHY I was there.  My parents were the most silent.  Nobody ever asked me why I’d tried to end my own life.

That seems a bit odd. Maybe it was some sort of bizarre form of ‘manners’ to not ask.  But if there’s ever a scream from a mountain top that someone needs to say something about SOMETHING, it’s a premature, unnatural attempt to die. During that time, my mom was going through radiation, post-mastectomy, and I’d been dropped off at school a week early to accommodate her radiation schedule (I was fine with being at school early- though the dorms were kind of spooky without everybody there- there were about 10 of us in a 12-story dorm).  I don’t remember dealing with my mom’s cancer at all. I’d been in such a rush to ‘look normal’ after having to leave school the semester earlier… I know I’d never have wanted to ’cause trouble’.

Looking back, I’m not sure I know all of the reasons for the overdose, and only remember the first part of it when I mechanically took sleeping pills one after another with the only conscious thought being how much I just wanted some rest.  I don’t remember any actual ‘death wish’. I  ‘just’ wanted relief from so much pressure of being back on that campus after being ‘removed’ the semester before because of deteriorating anorexia, bulimia, and depression with a suicide ‘plan’ (that was pretty dang lethal).  I was trying SO hard to ‘look OK’, and that pressure was unbelievable. SO when I started taking those sleeping pills, one after another, I was only wanting relief from the pressure. I had intended to wake up, from what I remember. When I woke up after nearly 3 days in a coma, I was confused.  I also didn’t believe that they’d found the remnants of fifty antidepressant tablets when they pumped my stomach.  I don’t remember that at all. I eventually sent for the hospital and university health center records.  I needed gaps filled in.

I also wrote to my roommate years later, who told me that I’d been out at a local bar (underage), and came back to the room drunk before dinner. She hadn’t seen me actually take the sleeping pills (I do remember her being in the room, but I was sitting at my desk, my back to her; being drunk explains the impulsivity and lack of planning for consequences of my actions- and why the drugs ‘took’ so intensely). But she said I went to sleep and didn’t get up the next morning. She said I’d mumbled something about not going to class because I was so tired. When she got back late that afternoon, I was still out of it, and she couldn’t wake me up. At all.  She got one of my floor-mates from the last semester who knew me better, and she looked at me and called the ambulance (about 24 hours after taking the pills…it’s amazing that I survived that long). I was taken to the university health clinic, who sent me on to a regular medical hospital/trauma center with a blood pressure that was nearly meeting in the middle. (Not good).

In looking at the records, my ‘coma scale’ couldn’t go any lower. I responded to nothing. Zip.  And, understandably- but frighteningly, I remember none of that. I don’t know when I took the bottle of antidepressants.  I don’t remember having my stomach pumped (and used to get so uneasy later in my nursing career when OD patients were often ‘threatened’ with having their stomachs pumped as some sort of punishment; they were seen as deliberately causing unpleasant work for the ER staff who had ‘real’ patients to take care of- those who hadn’t put themselves in that position- never mind that the person was in so much emotional pain that they felt they had no other options).  I never told anybody that I planned to overdose. I don’t think I knew I would OD.   I’d been trying to fit in and be social (not something that came easily outside of my home church group setting). I wanted to be in school.

I do remember asking the nurse in ICU what I had been wearing when I was brought in, as that would tell me what day it had been. I’d been brought in on a Wednesday.  I had been wearing a red gingham shirt and overalls- I did remember putting those on on Tuesday- brought to the ER on Wednesday.  I probably looked like a dead farmer.  I was very close to not making it.  I sent for my medical records years later, and my vital signs were very bad- as in not much difference between the top and bottom numbers of my blood pressure, a heart arrhythmia, and very slow respirations.  I was given some resuscitative drugs to maintain my heart rhythm, and fluids to maintain my blood pressure, and over a few days, I woke up.  Freaked. Out.

My first recollection is of someone moving an oxygen mask to ask me a question, so they could see me talking.  Then fade to black again.  Then, I clearly remember a nurse going towards my crotch with a syringe (no explanation that she was removing the catheter). I’d never been in a real medical hospital before. From there on, it was a bunch of blips of memory, finally getting back to a ‘slow’ normal. I remember being very confused by the Saturday cartoons.  I’d been propped up in a chair with the cartoons on (at age 18?), and it was hard to follow them. Bugs Bunny was too ‘deep’. For a while, there was concern about permanent brain damage, and the psychiatrist I went back to was surprised I wasn’t impaired.  I also remember the charcoal diarrhea… I didn’t know the ‘rules’ in ICU about not disconnecting the EKG leads without help before getting out of bed ( I didn’t want to bother anybody), so it would look like I’d flatlined when I was just in a hurry to get to the bathroom.  They didn’t like that very much. I felt the bruising on my breastbone where I’d been ‘knuckle-rubbed’ to wake me up, and the scratchy feeling in my throat where tubes had been.  And it all confused me.

While I don’t remember a lot about the overall overdose, I do know I didn’t want to leave school! I wanted to do well !  I wanted to show my friends that I was OK ! (And with that, I had some desert property in the Everglades for anybody who was on board with that idea). I didn’t want to be a failure.  I have to admit, that at 18 years old, in an ICU room in Urbana, IL, I had a serious meltdown when I was told I’d be sent back to the nut farm I’d spent February through mid-April earlier that same year.  My parents had been called (that was like ramming a dagger into my heart- how could they call them? I especially didn’t want to disappoint them… but  how could they NOT call them?  I was a huge liability at that point). Everything was falling apart.  I was hysterically crying when I saw my mom and dad show up later that day (?Sunday- no cartoons, and mom had to be at radiation on Monday) after clearing out my dorm room and selling my books back to the bookstore– for some reason, losing those books was almost like the ultimate ‘proof’ that nobody believed in me… I’d been ‘removed’ from school. Again.  For weeks, I cried about that.

My therapist from the previous and current semester had been called in (she was recovering from a blood clot in her leg, and having a semi-miserable first months of pregnancy).  She explained that there were no other choices.  I couldn’t remember the overdose- that was almost worse than planning it out.  They couldn’t ensure my safety. Forest Hospital in Des Plaines, IL had already been notified, and since I was as medically stable as I was going to get, I was being discharged from the ICU to be driven back up to the suburbs of Chicago.  I was devastated.  I was horribly ashamed.  I’d failed. Again.  I didn’t see the ‘illness’ part of what was going on. I just saw failure.

It was almost a bit of a relief to be around people who knew me, who didn’t think I was a lost cause (though the next several months- September 1982 through early January 1983 weren’t exactly smooth at the hospital… I was a train wreck, and things got worse before they got better, in the days of endless insurance days inpatient; ‘losing’ school was absolutely devastating, and stirred up a lot).  I spent a total of 7 months in the hospital over 2 admissions.  I was tested (I’m reasonably intelligent, so they said- LOL) from one end to another, and I tested them. I’d always been pathologically well-behaved (confirmed years later by my folks), and at the nut farm, I blew through some rules.  I also tried to escape (going where?) and hurdled the gardner and his wheelbarrow only to collapse on the sidewalk about 1/2 a block from the hospital, in full view of a busy road…. nice to have that on my resumé. *rolling eyes*  At any rate, I was in a place to work on whatever was the immediate problem, which was making sure I didn’t blindly go on some life-ending rampage.  I was never a ‘danger to others’… it was always ‘danger to self’.  I’d give the shirt off my back to ‘others’.   Whatever had happened in that dorm room in Urbana couldn’t happen again.

In some ways I don’t know if I’ll ever know what was going through my ethanol laced brain that Tuesday afternoon when I started eating sleeping pills.  Maybe the booze was a huge part of that horrendous time.  It does explain a lot- but there had to be enough going on to ‘set up’ what happened.  What I did.  The memory loss has always been really hard to deal with. There are days that are just ‘gone’.  No matter how hard I try to figure it out, it’s just not there.  But I always wondered why nobody asked me if I’d really wanted to die.  The answer is no.

Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

Tis The Season…..

….to have all sorts of things churned up.  I don’t really get ”depressed’ over the holiday season, but more a vague sense of being overwhelmed since there are a lot of ‘anniversaries’ around this time.  This year added a new one with the death of my amazing, crazy companion- my miniature schnauzer Mandy, who died on December 27, 2012.

I’m still crying pretty much every day when I think about her, and especially about that last day.  I’m very thankful that that ‘end’ part was pretty fast.  And she was in my arms.  At first, she whimpered enough to alarm me, and from that point until she was actually gone, no more than 15 minutes went by.  After she  peed, and then froze in her tracks, she seemed confused, and not sure what to do, so I just held her and told her how wonderful she’d been.  Her breathing slowly stopped as I held her on my lap.  The ‘new normal’ of not hearing her come running when I mess with the dishwasher or clothes dryer (she had a thing for appliances), of her not leaving the room when I sneeze (or even said the word ‘sneeze’), or escorting me to the door when I got my keys to get the mail.  I didn’t have to say anything; she just knew.  I miss her more than words really can describe.  She was my only companion here in this city, for the past 10 years.  I talk to my dad every day; I saw my dog 24/7- especially since being on disability since April 2004.

Then there is the whole issue of being disabled.  It is somewhat worse in the winter months since everybody has the heat on. I don’t tolerate heat- to the point I shaved my head again (well, I had a professional do it; I wanted to avoid slicing my ears off).  With my ‘normal’ hair (mine is really, really thick), I can’t tolerate the heat it retains. Think dead animal on my scalp.  I also have to see a surgeon this next week about some (more) cysts on my scalp that are painful.  They need to go, so the poor doc has to be able to see my head.  The other issues with disability include being in more pain when it’s cold outside, and my joints just not liking getting in and out of the car.  Sounds wimpy.  Maybe it is.  All I know is that I have to manage it the best I can- so whatever I can get delivered to my door (Schwann’s frozen foods, Walmart for laundry and paper goods, Amazon for miscellaneous stuff, etc), I do.   It’s still very painful just grocery shopping for the dairy/fresh items, but it definitely helps to get stuff delivered when possible.  I’m thankful that those things are available.

Early January is rough for anniversaries.  January 7, 1978 my figure skating coach’s six kids were murdered by her then husband.  I was 14 years old, and it rocked me to the core. I can’t imagine how she has done.  I think about her often, and have always prayed that somehow she’s managed to have a life after that.  January 10, 1987, I was raped and ‘tortured’ (word the newspaper used- don’t want to sound overly dramatic on my own) for 6 hours when the uncle of a baby I took care of regularly lied his way into my apartment… he did things to me I’d never heard of, being very naive…and a virgin.  I’ve never let anybody get close to me since then.  I’d always thought I’d have a family of my own.  That day changed a lot- but I survived.  And I’m thankful for that.

In 1982, the semester that started in late January was a bad one.  I was in the midst of some serious eating disorder stuff, and the depression I only get when I’m starving and purging.  I ended up getting sent to a psych hospital (no eating disorder ‘treatment centers’ back then) for several months.  That was a bad year. I ended up attempting suicide the next semester when I returned to the university.  I was in a coma, and then shipped back to the psych hospital for many more months, once I woke up and was medically cleared.  Things weren’t done in a week to 10 days back then.  I spent about 8 months altogether at Forest Hospital (Des Plaines, IL) in 1982.  They were good to me; I did do better, but the eating disorders were on-again/off-again for decades.

This is the first winter since early 2010 (when I was diagnosed with acute promyelocytic leukemia) that I haven’t been on chemotherapy or waiting for the built up amounts of toxins to leave my body.  I’m still dealing with the weight gain and changes in my blood sugars and insulin doses, as chemo messed that all up.  The diabetes is getting better faster (great endocrinologist with a Joslin Diabetes Center affiliate here in town). I wasn’t on steroids long enough for that to be an issue- it’s ‘just’ the arsenic, tretinoin (ATRA), methotrexate, and M6Mercaptopurine.  They rearranged my chromosomes (literally…. they ‘re-translocated’ the arms of 15 and 17). I guess it will take some time to get my body back to ‘normal’.  I hate the weight.  I’ve had a long history of eating disorders, so can’t just do some crash diet and hope for the best- it could easily trigger a relapse that I just can’t afford.  But I’m going to turn 50 in late 2013; I don’t want to  look like this when I turn 50.  I didn’t want to look like this at all… but it was chemo or die.

And yet, I have a lot to be thankful for. I’m alive- that’s the big one; people with APL sometimes aren’t diagnosed until autopsy (and I know of 2 people just a few months ago who only had one and two days from the time they were told the diagnosis and the time they died; one was 11 years old).  I’ve survived being raped, and other stuff. And, with my health, I am glad to just have a day when I can get the basics done around here.  I’d like to be around people more, and am hoping to get to that Bible Study I’d mentioned in another post; last week (the first meeting of this topic- Ephesians) I wasn’t feeling well- that doesn’t mix well with indoor heat, even with my ice vest.  A childhood friend who I’ve reconnected with on FB came over one Saturday, and helped me with some generalized clutter (result of not being able to unpack after the last time I’d packed to move BACK to Texas), and is coming again- that has been a huge help.  I want to get this place puppy-proofed for the new puppy I hope to get this spring.  That helps, too.  I can’t imagine not having that hope for a new little companion to fill the dog-shaped hole in my heart.

2013 isn’t starting badly… just ‘complicated’ by past and present stuff mixing together.   There is still more good than bad.  I still have a lot of interests, and while I can’t physically do a lot, I do find things to keep me happy and make me laugh, especially online.  Blogging has been a great way to blow off steam, and some days that makes  a big difference.  🙂