Tired of being tired and tired of being alone and tired of not having any income and tired of how long it's taking to get short term disability approved.  Leading to despair that I'll never be able to work again and despair that I'll not have the financial ability to cover my expenses and despair that I'll end up on the street with my cats.  Looking at the reality that I may need to give up my cats who currently are the only living beings with whom I have daily interaction.  Feeling like maybe I haven't earned the right to have anyone care because I have nothing to offer because I serve no purpose because I can't stand for more than a few minutes at a time and I'm constantly, chronically fatigued by doing nothing.

Sorry, too many years of being told I'm fainting to get attention has me questioning if I'm just giving in to feeling faint instead of motoring through like I should, like I have to because no one else will take care of me if I don't.  So if I lose my current job, who else will hire me if I faint or if they do and I faint repeatedly, will I just lose my job again and again?  And what about insurance?  What about a car, what's the point in having one if I can't drive very far any way?

Healthcare is another thing.  NCS isn't my only malady.  I'm diabetic, too.  NCS is incurable, just a life long pain in the ass because medication doesn't work for me and while my heart and my brain don't communicate with each other, it's not technically an issue of my heart being broken because my fainting has more to do with low blood pressure.  Diabetes is likely incurable, too because it runs on both sides of my family and we eat healthy or in my case, as healthy as I can on a limited budget.

I'm having difficulty finding the positive right now.  I can't drop out because I would go insane without human contact.  I'm practically there anyway, and if this is all about me getting attention, clearly, I have a mental defect so maybe I already am insane.  I'm tired.  I'm not thinking straight.  I have to figure out how to spin gold from straw so I can cover my expenses in case my short term disability isn't approved or I am unable to have a paying job.  I need to save my strength and brain cells for that.

Normal?

So I discovered a new parlor trick relating to my NCS.  I am highly symptomatic today due to the heat and humidity and possibly PMS.  When I went to the kitchen to figure out lunch, I got dizzy and had to sit down.  I noticed that my feet were red.  I pushed down on the skin and that spot went white as the blood was displaced.  I thought to myself, "Well, this definitely proves that whole 'blood pooling in the feet' thing."  I put my feet up on the cupboard door and my feet looked normal again.  So I reached down and pushed down on the skin again, but there wasn't a lot of blood to be displaced so no color changes.

I wish I could say that was fun, but it's not fun and it's not a trick I want to be able to do.  I was talking to my friend, Dawn yesterday and I told her, "I just want to be normal again."  And she laughed and asked, "Normal? You?"  I had to laugh.  Some people will say that normal is only a 98.6 temperature on a thermometer.  I would have to retort with that's not normal for me.  Indeed, it isn't.  My normal body temperature is 97.9.  So my normal isn't the average normal.

The more I've been looking into NCS, the more I'm discovering that my below normal actually is normal for my condition.  The few support groups I've joined, the more I'm finding that I am normal among a chosen few, and none of us asked to be this kind of normal.

It has been said to me that I live crisis to crisis with this condition.  It was meant as an indictment, and I can be convicted of the accusation because when I feel good, I can do so much, but when I feel lousy, it becomes a crisis.  My blood pressure drops.  I get sleepy.  I can't focus or concentrate.  My speech gets slurred.  It's a mini crisis and I can usually handle it by laying down and propping my feet up.  Within an hour or two, I'm back to whatever normal is for me.  But as I'm getting older, my response time is slowing down dramatically.  Technically, I'm still trying to recover from fainting on July 16, which was over 1300 hours ago.  This is officially the slowest response time I've ever had.

As time is going by, I'm trying to weigh what's going on in my environment against how my body is responding to it.  Heat, humidity, hormones: check, check and check.  Cooler days, still not feeling good or whatever my normal is.  Diabetes, blood sugar is getting high again.  May need to adjust meds or may need to switch from oral to insulin.  Had my doctor do blood work to check my estrogen levels and they are within normal range for a woman of my age.  Now I am beginning to question if this ickiness is my new normal.

New normal.  It happens all the time.  Paradigms shift.  As new information is uncovered a new normal takes the place of the old normal.  Galileo got excommunicated when he informed the world that Earth was not the center of the universe.  It took the Vatican years to accept this new normal that to everyone reading this is the normal.

Nobody likes change.  I sure as hell don't.  I also don't like the changes occurring with my body.  I don't like the new adversarial role it has taken in relation to my life.  And I don't like the possibility that I may have to accept a new normal because I fear it is going to make me dependent on family or friends.  For many of my fainting episodes that garnered me a trip to a local ER, I would call a cab to take me back to work so I could get my car and drive myself home.  My co-workers questioned why I would do that when I have family in the area.  I do tend to lean heavily on my family because there's a tighter bond there than there is with any of my friends, and let me tell you, I have some awesome friends.

One of my very dear friends has cancer and Sarcoidosis.  She's been fighting the since 2009 and it's still an uphill battle, but she's able to drive her kids around and she's able to be involved in her church.  Still, when something changes to her status quo and she needs to be hospitalized or she catches a cold, she needs to lean heavily on her support network of friends.  She was lamenting one day that after four years, people expect her to be cured or to be at death's door and because she's neither, she feels like they're getting weary of helping her.  Thankfully, my illness is nowhere near as severe as hers is, but I have been dealing with it for 31 years and people seem to expect me to be cured or be at death's door.  I am neither and don't expect to be either for many years.

Medical science is still trying to get a handle on the treatment of NCS.  So many people have so many triggers.  For some, medication can help to alleviate symptoms and for others, a pacemaker helps to keep their heart rate high enough for them to function, for others, it's learning to not stress out about external factors that cause them to faint such as when they have blood drawn or when they see a needle or when they experience a traumatic event.  Medication no longer works for me. My heart rate is within acceptable range for a woman of my age.  I have never fainted when my blood is drawn or when I see a needle.  Last year: I hurt my back at the end of January, my aunt died February 4, 2012, I flew to Tampa for her funeral after driving myself to the airport (and getting lost on the way), I was in my final semester of college, my mom died February 14, 2012 (and I was at her bedside along with some of her other children and grandchildren), and my cat died on February, 18, 2012.  During those three weeks of high drama, I did not faint once.

So if my new normal is feeling fatigued over doing next to nothing.  If it's chronic dizziness and feeling faint, I'll have to find a way to adjust so I can continue to care for myself.  Maybe my job will allow me to recline at my desk so I can keep my feet up as much as possible.  And if that new normal is eclipsed by another new normal, I'll have to adjust again.  And I'll be grouchy about it and the process will be slow, but I'll get it done.

Neurocardiogenic Syncope support

I have decided to dedicate this blog mainly to discussions about my condition: Neurocardiogenic Syncope or NCS for short.  I have been on the.worst.episode.of.my.life and the misconceptions and suppositions I'm having to deal with are staggering and not helpful and in some circumstances, are harmful.  I would like to give voice to others who suffer from NCS because not only is the condition so misunderstood, but so are the people who spend most of their time looking and feeling good and healthy and normal.  I just want you to know that you are not alone.

About a week or so ago, I found a group on facebook called Neurocardiogenic Syncope Awareness.  It has become a cyber-Nirvana for me because these people get me, because these people ARE me.  Cue the harp music and angels because this has been a heavenly experience.  One of the women in this group stated that when she had her second tilt table test, she didn't faint and she didn't feel faint until they were lowering her back down to a horizontal position.  I literally got a tear in my eye because I just had my second tilt table test on July 30, 2013 and that was my experience, my exact experience.

When my second tilt table was negative, I felt betrayed.  I spent seventeen years prior to diagnosis being told there was nothing wrong with me.  My EKGs always come back negative.  Up until this last Holter monitor, nothing abnormal showed up there either.  What I heard for seventeen years of my life was, "There's nothing wrong."  So I would work until I dropped, literally.  I have a friend who can tell you he called me from his desk at the office to talk to me about a customer and I told him I wasn't feeling well and then I just went out.  They found me slumped over my desk with the phone still in my hand.  Until I dropped.  So having that second tilt table come back negative, I immediately retreated into the standby of "nothing wrong" and went back to work on August 2, 2013 even though I was having my typical morning fatigue (despite a good night's sleep) and vague icky feeling that precede an episode.  I worked for 3.5 hours and then I had to leave.  I came home and laid on my couch with my feet elevated.  And I have still been countering some doubt until I went to check in with the group on facebook today.  When I read that someone else had that happen to them, I had to post a response.

I had to post to this stranger on facebook because I knew her need to not feel like "there's nothing wrong".  I knew how important it is to have validation that someone else has your same symptoms, your same triggers, your same frustrations.  It was a relief  for me to know I wasn't alone in this experience and I wanted to provide her with this same relief because I know.

I saw a video posted on there to which I am posting a link.  http://abclocal.go.com/ktrk/video?id=9098112 and I have asked people to watch it.  This is on an ABC news station and it states it is due to NCS that this young man had an accident.  And there were tragic results.  The man with NCS survived, but three others didn't.  And this poor guy's heart stops.  He flatlines.  Thankfully, I don't, but now I'm having to wonder if I'm approaching the possibility of having to give up my car or my license because that would mean I'd have to give up some independence, some autonomy.  Ironically, NCS is considered Dysautonomia, kinda like your autonomy is gonna get dysfunctional. (That's not what it means, but that is what it feels like.)  I felt like saying, "Well, at least I'm not as bad as this guy."  And truly, I thank God that my heart doesn't stop for a few seconds, but my heart is dysfunctional.  And it's OK to admit to being frightened that right now, I can't make a sandwich for lunch because I don't have bread and don't have the ability to go two blocks to get some.  And that it's OK to be in tune with my body to know that when I feel like this, I'm more likely to faint so it's OK to recline on my couch with my feet up and not do anything I don't have to do.   It's even OK that it's taken me over an hour to write these few paragraphs out.  It's OK that I'm not doing anything productive right now. I've given myself permission.  Give yourself permission, too.

Ugh!  Heat and allergies.  I usually take a benadryl earlier in the evening to help me sleep through the night until I can take Claritin to get me through the day with the allergies.  As I am starting to write this, it is nearly 3:30 am and I gave up my bedroom for the living room (where the fan is) well over an hour ago after I woke up coughing and remembered that I'd forgotten to take my Benadryl.  Have I talked in a complete circle? Ok, good. We're all on the same page then.

I'm a writer.  I write as a means of catharsis, as a means of coping with whatever may be going on in my life.  And I'm candid and open about what's going on, to the point of TMI sometimes, but that's how I roll.  I keep a diary/journal and have since I was thirteen years old.  I get way more TMI in there, but I write in a couple of different mediums.  I like to think I'm witty, pithy, intelligent in the posts I put on facebook, but I realize there are times when I just come across as whiny.  Lately, I'm coming across as whiny, but I swear it's about trying to purge the whininess from my system.

NCS (neurocardiogenic syncope) is a form of dysautonomia, meaning my nervous system, the vagus nerve in particular is wonky.  And the more I read about my NCS, the more I'm running into walls.  As I stated in my last whine, um blog post, we know I have NCS and we know that pharmacological treatments have been exhausted either because they don't work, worked for a while but stopped working, or exacerbated my symptoms.  And I even went for years without incident, but have fainting since I was 14, pretty much all the way through high school, but even then, two years I fainted at a long parade in which my high school band marched and two years I didn't, one of them being my Senior year and as saxophone section leader, I was glad to get to walk around to check on the rest of my large section.  And people would come up to me and say, "I thought you fainted along the parade route."  And I kept having to repeat myself that I had not.  It turns out one of the Sophomores in my section who also had dark hair had gone down and people just assumed it was me. 

Sorry, I digressed right away from the topic for a moment there.  Since receiving the diagnosis of NCS in July 1999, I've done my best to stay on top of treatment and therapies.  There haven't been any new drugs I've seen.  And there is a very real possibility that this condition will be one where I just have to learn to live with my body (heart) being broken and irreparable.  Some people think this means I'm refusing to deal with my condition or that I'm giving up.  I can assure you, I am dealing with my condition and I'm not giving up.  Sadly, I have to acknowledge that I'm aging and with age comes a break down of the body.  I'm very fond of saying, "I'm too young to feel this old."  I mean it. I'm 45, not 65, and other than diabetes which as far as I know is under control, I'm pretty healthy.  But that doesn't necessarily mean it's so.  And right now, over a month of not being able to drive two blocks to work because I can only work for so many hours sitting upright and then I have to lie down and may have to stay there for hours, I am willing to concede that perhaps my diabetes is not as well controlled as I would like to think it is.  Today I had to go to my doctor's office to have him fill out my short term disability paperwork eleven days after he filled out the same info on FMLA paperwork.  When I stepped on the scale, I noticed I was in a new decade for weight.  I pointed this out to one of the two nurses and she confirmed that I had lost seven pounds.  Seven pounds in eleven days.  I can't possibly be healthy, can I?  There must be something else going on and complicating my NCS with it's additional nefarious presence.  Or, maybe it's that a solid month of eating a lot of pb&j has resulted in dramatic weight loss, except my only exercise is changing positions on the couch from sitting to supine, and not even vigorously.

My doctor had lab work done on me today.  At my insistence and upon the advice of a friend who was kind enough to toss around what if (more like what the hell!) scenarios with me, he is checking my hormone levels because at my age, I might be perimenopausal and my hormones might be messed up to the point where it's impacting my general health.   Awesome.  Or it could be that my glucose is out of whack.  Or it could be that my NCS is just getting worse all on it's own without any additional factors.  The first two would be welcome because if it's hormones, slap a patch on it and it will get better and if it's blood glucose, up the oral meds or get rid of them and go on insulin.  Cause/effect; problem/solution.  Yay!  I love it when my problem has a solution!  However my fear is that it's just the old NCS rearing it's ugly head and medical science still doesn't fully understand the problem which makes finding a solution much harder. 

Last month I had a Holter monitor I had to wear for 48 hours over a weekend.  I was ticked off because the previous five or six times I'd worn the Holter, nothing showed up, nothing, nada, zip, zilch, zero.  I was surprised to get a phone call from my primary care doctor's office telling me it showed Premature Ventricular Contractions and Premature Atrial Contractions.  And I thought, "Yay!  Problem identified."  Doc's office said he would like to start me on Verapamil, but would wait to see what the cardiologist had to say.  So I went online to see what Verapamil was supposed to do for me and I read “Treats high blood pressure.”  I interpret this to mean its intent is to lower blood pressure which would be great if I didn’t already have low blood pressure which tends to make me faint anyway.  And yes it also said it’s used to treat arrhythmias which is definitely what the PVC/PAC issues are considered to be, so perhaps it will work.  I’m willing to try because up until last month, arrhythmia was not ever discussed.  Neither were the terms bradycardia or tachycardia being bandied about.  So my heart is out of step with itself and sometimes beats too slowly and sometimes beats too quickly and previously with my NCS, all that was ever discussed was low blood pressure.  So these are new developments and I hope and pray that these problems have a solution.

 Ugh!  Heat and allergies.  I usually take a benadryl earlier in the evening to help me sleep through the night until I can take Claritin to get me through the day with the allergies.  As I am starting to write this, it is nearly 3:30 am and I gave up my bedroom for the living room (where the fan is) well over an hour ago after I woke up coughing and remembered that I'd forgotten to take my Benadryl.  Have I talked in a complete circle? Ok, good. We're all on the same page then.

I'm a writer.  I write as a means of catharsis, as a means of coping with whatever may be going on in my life.  And I'm candid and open about what's going on, to the point of TMI sometimes, but that's how I roll.  I keep a diary/journal and have since I was thirteen years old.  I get way more TMI in there, but I write in a couple of different mediums.  I like to think I'm witty, pithy, intelligent in the posts I put on facebook, but I realize there are times when I just come across as whiny.  Lately, I'm coming across as whiny, but I swear it's about trying to purge the whininess from my system.

NCS (neurocardiogenic syncope) is a form of dysautonomia, meaning my nervous system, the vagus nerve in particular is wonky.  And the more I read about my NCS, the more I'm running into walls.  As I stated in my last whine, um blog post, we know I have NCS and we know that pharmacological treatments have been exhausted either because they don't work, worked for a while but stopped working, or exacerbated my symptoms.  And I even went for years without incident, but have fainting since I was 14, pretty much all the way through high school, but even then, two years I fainted at a long parade in which my high school band marched and two years I didn't, one of them being my Senior year and as saxophone section leader, I was glad to get to walk around to check on the rest of my large section.  And people would come up to me and say, "I thought you fainted along the parade route."  And I kept having to repeat myself that I had not.  It turns out one of the Sophomores in my section who also had dark hair had gone down and people just assumed it was me. 

Sorry, I digressed right away from the topic for a moment there.  Since receiving the diagnosis of NCS in July 1999, I've done my best to stay on top of treatment and therapies.  There haven't been any new drugs I've seen.  And there is a very real possibility that this condition will be one where I just have to learn to live with my body (heart) being broken and irreparable.  Some people think this means I'm refusing to deal with my condition or that I'm giving up.  I can assure you, I am dealing with my condition and I'm not giving up.  Sadly, I have to acknowledge that I'm aging and with age comes a break down of the body.  I'm very fond of saying, "I'm too young to feel this old."  I mean it. I'm 45, not 65, and other than diabetes which as far as I know is under control, I'm pretty healthy.  But that doesn't necessarily mean it's so.  And right now, over a month of not being able to drive two blocks to work because I can only work for so many hours sitting upright and then I have to lie down and may have to stay there for hours, I am willing to concede that perhaps my diabetes is not as well controlled as I would like to think it is.  Today I had to go to my doctor's office to have him fill out my short term disability paperwork eleven days after he filled out the same info on FMLA paperwork.  When I stepped on the scale, I noticed I was in a new decade for weight.  I pointed this out to one of the two nurses and she confirmed that I had lost seven pounds.  Seven pounds in eleven days.  I can't possibly be healthy, can I?  There must be something else going on and complicating my NCS with it's additional nefarious presence.  Or, maybe it's that a solid month of eating a lot of pb&j has resulted in dramatic weight loss, except my only exercise is changing positions on the couch from sitting to supine, and not even vigorously.

My doctor had lab work done on me today.  At my insistence and upon the advice of a friend who was kind enough to toss around what if (more like what the hell!) scenarios with me, he is checking my hormone levels because at my age, I might be perimenopausal and my hormones might be messed up to the point where it's impacting my general health.   Awesome.  Or it could be that my glucose is out of whack.  Or it could be that my NCS is just getting worse all on it's own without any additional factors.  The first two would be welcome because if it's hormones, slap a patch on it and it will get better and if it's blood glucose, up the oral meds or get rid of them and go on insulin.  Cause/effect; problem/solution.  Yay!  I love it when my problem has a solution!  However my fear is that it's just the old NCS rearing it's ugly head and medical science still doesn't fully understand the problem which makes finding a solution much harder. 

Last month I had a Holter monitor I had to wear for 48 hours over a weekend.  I was ticked off because the previous five or six times I'd warn the Holter, nothing showed up, nothing, nada, zip, zilch, zero.  I was surprised to get a phone call from my primary care doctor's office telling me it showed Premature Ventricular Contractions and Premature Atrial Contractions.  And I thought, "Yay!  Problem identified."  Doc's office said he would like to start me on Verapamil, but would wait to see what the cardiologist had to say.  So I went online to see what Verapamil was supposed to do for me and I read “Treats high blood pressure.”  I interpret this to mean its intent is to lower blood pressure which would be great if I didn’t already have low blood pressure which tends to make me faint anyway.  And yes it also said it’s used to treat arrhythmias which is definitely what the PVC/PAC issues are considered to be, so perhaps it will work.  I’m willing to try because up until last month, arrhythmia was not ever discussed.  Neither were the terms bradycardia or tachycardia being bandied about.  So my heart is out of step with itself and sometimes beats too slowly and sometimes beats too quickly and previously with my NCS, all that was ever discussed was low blood pressure.  So these are new developments and I hope and pray that these problems have a solution.

But what if they’re solutionless problems?   What if this is a matter of faith and I’m only to know there is a problem but not know a solution while I shuffle around this mortal coil?  What’s going to happen to the single lady who lives alone with her cats?  (Yeah, cliché, I know.)  Will anyone take her in if she is unable to work at a job to earn a living?  (My cats refuse to get a paper route to help out with expenses but still insist on being fed.)  Would I be able to get SSI Disability if I have a solutionless problem condition?  Because unless you have this or POTS (Positional Orthostatic Tachycardic Syndrom), I look like a slacker who expects people to feed her grapes and pay her for the privilege.  And I used to think I wouldn’t mind being independently wealthy and just sit around doing nothing.  Let me tell you, after a month of doing just that, I’m stir crazy.  I would like to go out and do stuff.  I would like to feel up to finally unpacking around here after I came to the conclusion that buying a house would be a really bad idea because, I can’t stress this enough, I really don’t think I should live alone.  And even if I could live alone, having a house means having a yard I’d need to keep up and with heat being a trigger for my fainting, I wouldn’t be able to do much and I really, really wanted a garden so I could grow my own vegetables.  Pipe dream and I finally had to put the fantasy aside and deal with reality.  I just made this decision a few months ago after I had some huge vet bills to pay for my sick cat, who really needs to get a job and help out around here. 

Now the living room and kitchen areas need to finish getting unpacked, but I don’t have the energy to stand to do it.  I don’t have the stamina to sift through and figure out where it needs to go.  But I can sit on the couch and play mindless games on facebook, but even that’s getting old.  I had hoped to join a choir at one of the local Catholic churches around Lansing, but the other day, I was singing (trying to) and I sounded like Peter Brady and I got tired, from singing.  What.The.Hell???  I warn people coming by to visit that that area looks like an episode of Hoarders.  But if you look at my bedroom and the front hall and the bathroom and even the kitchen itself, all is well.  I unpacked my kitchen first thing because I love cooking and baking so I would need that stuff first.  And my bedroom looked like a war zone for a while but I did get that put together just last month, the beginning of last month. So here’s the timeline: moved in October 2012, various issues around apartment and maintenance not being addressed well so considered taking my bonus and/or tax return to put down payment on house, discover bonus is nowhere near the size I was expecting (none of ours were where I work), cat gets sick and needs abscess drained draining my savings along with it, decide it would be a bad idea to buy a house and try to live in it on my own, decide to stay in apartment and finish unpacking, get bedroom unpacked, finish unpacking books (I have three bookcases and they’re all full), start passing out before my periods instead of in conjunction with them, episodes lasting longer, FMLA leave of absence due to not being able to physically perform the demands of my job which consist of sitting in a chair and talking to people on the phone.  Yep, I’m whiny and yep, I think it’s merited.

I cleaned the litter box today.  I mean CLEANED it.  I had to because when I got back from the marathon which was the trip to my mailbox, I was overwhelmed by the smell of cat pee. Once I finished with this task, I had to sit on the couch to catch my breath and I almost took a nap, but I'd already done that earlier in the morning so I fought the urge.  I'm so tired of being tired.

Today I removed all of the clumping litter in the main litter box and the non-clumping litter in the back up litter box.  Then I washed the litter boxes and put the back up in storage and put fresh litter in the covered (main) litter box.   I thought to myself I really must apologize to my friend and her husband who stopped by to visit me last night because it must have reeked.  I didn't know because I haven't ventured outside of my apartment since July 18th and even then it was for medical purposes.

I think my mistake was not putting the used litter in separate bags.  Probably 30 lbs. total which I dumped into a garbage bag. Then I lifted it again to double bag it. THEN I put it in an empty box marked "FRAGILE".  As a means of completing the irony, I carried that box of two garbage bags worth of cat crap out to the dumpster which was not only further away than the mailbox in the mail room, but was going to require me to lift it up to my shoulders and heave into something that smelled worse than my apartment did.

Why did I do perform this herculean task of ridiculous non-necessity?  Because in the time I have been sitting at home, I've had too much time to think, to over think.  I have finally almost allowed myself to acknowledge that when I feel like this, like I have for two weeks now, I cannot focus well and I am quite likely to pass out. But despite kind of maybe knowing that fact about myself, I still can't give myself permission to not do for myself.  I think this comes from years of having to rely solely on myself for my care.

I'm not saying that no one helps.  I've had friends and family swing by to do little odds and ends things for me. One of my friends took all of my dirty laundry and washed it for me.  This same friend even contacted me today to see if I needed help with anything.  I gave her some bullshit about needing to get a check deposited into my bank account, but I neglected, willfully, to mention the issue with the cat shit.  I had no problems with her washing my underwear, but had problems with her wrestling 30 lbs. of feline excrement to the dumpster.  If my laundry bag had broken open, that would have been an inconvenience for her, but if my doubly bagged box of cat feces had broken open, that would have just been gross.  Did I mention that last week when she was helping me out, she scooped the litter boxes?  I should also mention that she's allergic to cats and that she is my heroine and that her name is Carrie Michael Nowlin and that I am grateful for her willingness to step in and help in any capacity she can.

I am a bad friend and family member because I'm not always gracious about accepting aid. But, I now also better understand my father and his reluctance to admit he needs help.  It is hard to let go of doing things for yourself especially when you are unable to do them for yourself.  It's giving away autonomy and recognizing that you really don't have control over your things in your life.

In my case, I don't currently have control over my body.  My heart has finally stopped playing Hide and Seek with my doctors and showed that the ventricles have a tendency to contract prematurely.  It only took about five or six negative Holter monitors over the course of sixteen years for this to finally come out in the most recent one.  Tomorrow I have to go for a tilt table test, the second one in fourteen years.  I can't wait to see what my heart does then.

Truly, I cannot wait to see what happens tomorrow.  I know that there is something weird going on with my heart, some kind of disconnect or crossed wire or something.  Now that the doctors know about the PVCs, when they purposely make me faint tomorrow, they'll be looking to see what my heart is (or isn't) doing when I pass out.

In the meantime, I feel sheepishly delighted that I didn't give myself a heart attack or keel over from the activity today.  I was also relieved when one of my neighbors saw me as I was stumbling back to my apartment and said, "Are you OK?  You don't look too good...or happy...or well."

I still have difficulty focusing.  I'm still struggling to find words and to type them out.  But my heart didn't explode and I remained upright albeit seated.  Sadly, I still feel like I'm not pushing myself enough.  Ironically, even though I sincerely believe the words of the previous sentence to be true, a part of me would love to have someone drop off a chicken dinner from Boston Market...and maybe cut the meat off the bone for me because I'm exhausted.  (Stupid smelly litter box.  Stupid recalcitrant Suz.)

Lately I've been having a lot of dreams about being "home", my childhood home back on Hickory Street in Owosso, Michigan.  That's where home still is for me. Home is where the mom is and I've been missing her a lot lately because I feel helpless.  There's nothing like helplessness to make an adult want their mommy.

You must understand that for the past 15 years or so, my mommy spent a lot of time feeling helpless.  Emphysema sapped her strength and quieted her voice.  There were days when she couldn't speak much and we knew she was feeling poorly because if there was one thing she enjoyed, it was talking.

She was quick to give her opinion regardless of whether or not it was requested or if the advice she offered was pertinent to the situation.  She did it out of love, out of wanting to make the people she loved into better people.  "What you ought to do is..."  I miss hearing that.  I miss getting angry about the words that usually followed the ellipsis, wisdom for a different age and other circumstances.

One thing I could always count on her for was comfort when she knew I was ill.  There were times she doubted that my symptoms were part of an actual illness or condition.  Chronic appendicitis garnered me an angry, "If there's nothing wrong with you, I'm taking the fee for this one out of your hide."  But when Dr. Brown told her I was borderline with appendicitis, her attitude turned 180 degrees and we spent the weekend with her watching over me and after I was put in the hospital for the appendectomy, she walked to the hospital to visit me.  And that was a pretty big deal for my mom, a woman who battled agoraphobia for a time, to walk about half a mile by herself.  She was remorseful, but she set aside any self-pity to take care of me.

I think part of the reason I feel so badly about feeling so badly is that she would be telling me to suck it up and get back to work.  She's not here so I'm having to nag myself and I end up arguing with myself that if I go in to work, I'll pass out.  And there is no one who can supplement my income when I have to take time off.  I've had  a rough year with a condition that is best described as my heart and brain don't communicate as they should.  (Medical condition imitating life.)  I have exhausted my paid time off, but due to having FMLA (Family Medical Leave Act) I can take the time off, but I won't get paid.

I can hear my mother telling me to write.  I've been trying to write, but the preceding paragraphs took me close to an hour to write because focus is exhausting.  I woke up this morning and took a nap, but I could still hear Mom's voice telling me to write, to do something, anything lest my brain atrophy further.  And even though I know this is drivel not worthy of being read, I'm going to publish it anyway because it's a start.  Maybe I can shut off Mom's voice in my head despite the fact that we sounded a lot alike.  I'll try to remember to speak her words of encouragement and not her words of criticism.  But I will long for her hands stroking my hair as she rocked me.  It isn't soothing to sing to myself even though I have her voice.  Still, I hear her, "Stop crying, baby girl. You've got work to do."