If It's 3AM I Must Be wide-Awake and Listening to Lady Gaga

I get HBO On-Demand so can watch Lady Gaga's Madison Square Garden concert whenever I need background music to work by.
I'm trying to face the reality of the staggering debt that I'm in. Like so many I thought since I had "good" health insurance I really had nothing to fear. I always paid my little $20 co-pays and thought I was good to go. But the co-pays resulting from 3 long term hospitalizations in 18 months coupled with the individual doctor bills I already had have added up to thousands of dollars. Throw in my husband's unpaid student loan, maxed out credit cards a $30,000 Small Business Administration start-up loan (don't even think about defaulting on these people) not to mention the 2 dear friends that invested serious cash in my business and I've got almost $75,000. There's an organization that may be able to help us but first I have to pull it ALL together. Looking at your financial picture, no matter how much or little you owe is a very scary thing. Between the money I invested to start up my small business (and was subsequently forced to close due to my stroke) and my medical bills I've never been so deeply in debt. Since I'm now on what is jokingly referred to as a "fixed-income" from disability and my pension) there'll be no more raises in my life time that I can count on to help me dig out of this hole.

My telephone is now being held hostage by collection agencies. They make robo- calls to me all day demanding payments. I've tried to make arrangements with them but paying $25 a month really doesn't' cut it when owe someone $2,500. So now I turn the ringer off and look at the ID listed to see if its someone I know or if the call is in my area code and from a doctor.  When I worked and had a large salary I thought of people like me as "dead beats" that didn't honor their responsibilities. If you don't think the universe has a hell of a sense of humor talk to me about it sometime.  To go from a six-figure salary to contemplating bankruptcy 4 years later is not nearly as funny as the movies would have you believe. I follow the recommendations you always read that say pay your mortgage and utilities, food, gas, etc. If there's anything left I try to send small payments to creditors.

Still, there is something about putting it all down on paper and facing it that's given me much more of a sense of relief than I expected. It's a relief to actually see the numbers rather than have them constantly rolling and rattling around inside my head. I've also decided this is a major step towards owning my own current situation, bad health, deep debt and all. I took myself from being a teenage welfare mother to being Assistant Commissioner of Welfare for my entire State. I can do this. Well I can do it at 4:30AM in the morning. The vampire in me fades a great deal in the daylight.

Oprah's Last Words

Like so many people I watched Oprah's final show. Although I've enjoyed watching her over the years I never found it the life changing experience so many others testified to. Frankly I've gotten more inspiration and/or thought provoking from some of the lyrics in Lady Gaga's songs. But on her last show she talked about purpose - as in "we all have a purpose for being here." Now its not the first time I've heard that said but it is the first I stopped long enough to actually HEAR the meaning behind the words. My problem has always been how do you know your true purpose and what's the difference between hearing the workings of your own mind and actually hearing the truth of your own purpose for being here and no I'm not high. But watching my health take a nose dive over the past five years has left me alternately bitter, pissed-off, mad as hell and occasionally acquiesce. I'd think I'd caught a glimpse of my "purpose" but it would fade away just as quickly. I spent so many years climbing the ladder of achievement, so much energy and so much hope. Until the collapse of my small business I had never truly failed at anything in my adult life. I've had setbacks but never flat out failures. It took me more than a year to break out of my state of shock over it. It didn't matter that having a stroke in the middle of trying to get a business off the ground is pretty good excuse. My super type-A personality insists I relentlessly blame myself.

So I'm trying to figure out the reason for all that's happened in the last years and how it ultimately turns into a purpose. Each time I've been hospitalized I come to and a doctor says "You should be dead!" It's said with a tone that's incredulous, It's as if I do have a purpose and the universe won't let me go until I fulfill it. In the mean time it feels like I'm being pecked to death by chickens with each new hospitalization, each new diagnosis. I'm trying to figure out how to move from this stasis.

I fell again today. My husband sprinted over the bed and grabbed me preventing me from hitting the floor even harder. He never ceases to amaze me. When I was out in the world I had an intense dislike for people who whined or did the "poor me" dance. Now here I am doing the dance myself. I keep wondering exactly how I made the universe so angry. For those of you who have been hanging in there with me I'd like to think you've seen some movement forward from me. I'm working with a non-profit disability advocate group as a consumer advisor. Thank the Goddess for the Internet. It enables me to communicate with the outside world although I still can't leave the house. I'll be practicing getting in and out of my van this week. The first time I tried to climb into the driver's side I fell flat on my back because my legs wouldn't support the push off we all take for granted to get in a car. Walking up my inside steps and getting into the van are my two major goals for the next two weeks. Medicare will decide if I can continue having physical therapy and occupational therapy for another month soon but I've got to show progress. I think I do but the repeated falls to throw me backward.

And about the purpose thing - the caretakers tell me to slow down. Start the purpose search when I can walk without falling. Since I don't know when that may be its damn hard to be patient.

The Black People's Nod

Many years ago I introduced a white friend to the black people's nod. After I explained it to him he saw it every where. Here's how it works. When I was a child I noticed that black people nodded their heads at one another as though they knew the person passing by them. I originally thought it was familiarity and something old people (read adults) did. I went through my teens and twenties occasionally seeing the nod but not often. It was the sixties and I was definitely not traveling in circles where people understood the nod let alone actually did it.

As I grew older the nod became more important to me, especially when I would find myself one of only a few black people at an event of some kind. The nod seemed to say to me "Don't worry. We're in this together. I'll watch out for you and you watch out for me." At least that's how I chose to interpret it. Throughout my adult years I've found myself nodding more and more often. I suspect it has something to do with getting older. It gives me a sense of calm and joy, especially when a younger person nods back at me. Though they may not even realize it but somewhere along the line a parent or grandparent introduced them to the nod, without explanation.  They adopted it without even realizing it and so the tradition continues on.

I have seen so many customs and traditions among the new immigrants and often wish it were possible to just walk up to someone and ask "Why do you do that?" but in our present hypersensitive society such behavior is forbidden. I recently saw on TV that Hindu's were celebrating one of their holy days by making all kinds of sparkly doo-dads and then tossing them in the local river. Unfortunately the river was not the Ganges but water off Long Island Sound. The neighbors were furious when all that "trash" washed back up on shore. After some of the usual rhetoric there was a compromise in which the Hindu's gathered together on shore and cleaned up the water when the ceremony was over. I think some of their neighbors pitched in. A young man said it was time that the old and new found ways to coexist. Maybe all cultures have a nod of some sort.  Maybe they'd share it with the rest of us.

Hospital Schedules

If you've ever spent any time in a hospital you'll understand when I say its really hard to break away from a hospital schedule.  At 5am a nurse or aide magically appears at your bedside to give you your first mind boggling medications of the day, check to be sure your bed is dry and give you a light bed bath. Then, wrapped up like a baby in a swaddling blanket your covered up all warm and clean, lights out and back to sleep until breakfast time. At about 8am you're woken up for breakfast, after which you're expected, if capable, of sitting on the edge of your bed and washing yourself up.

The thing about this schedule is that it doesn't stop just because you leave the hospital or rehabilitation center. Your personal circadian rhythm keys right into it and viola - your wide away at 5am. I've been home from rehab for two weeks now and I still can't stop waking up at 5am. Its driving me nuts because I also have to lie down after lunch for that all important  afternoon nap. Being home is tougher than I thought it would be.  I've fallen twice now and because my husband wasn't home there was no one to help me get back up. Two hours lying naked on the kitchen floor is a truly humbling experience. I had to crawl to the front door to unlock it for the visiting nurse who fortunately decided to come early for her visit. She taught me how to get to the hallway steps and pull myself up just  couple of steps high enough, swing round into a sitting position then grab onto the walker and pull myself up straight. Its all about the pivot. My goal is to be able to go all the way up the stairs (14 steps) by my birthday - May 13th so send out the prayers, light the candles and keep a good thought for me.

I'm working hard on focusing on can and not can't but for a negative soul like me it ain't easy. The good news is my son and a friend came over today and moved my dresser downstairs.  Its great to stop dressing out of a clothes basket and finally have dresser drawers I can make messy instead.

When the Doctor Says It's Time to Stop Fighting My Illnesses

It's a tough question to ask ones self - a tough question to face.  Last week was hell. Mid-week I received 8 puncture bites from my dog. I came out of it black and blue and bruised half-way up my arm.  I should have realized it would effect my lupus but I honestly didn't think about it.  Over the next two days both hands swelled up and I was so tired I couldn't get out of bed.  I knew my dog had its rabies shots so I wasn't worried about that.  I was worried about the general dirtiness of a dogs mouth and the fact that I have very little left of an autoimmune system.  Then the forgetfulness kicked in and I began missing medications and insulin.  By Thursday night I couldn't get out of bed without help and my husband had to stay home from work to take care of me. My husband and I know the drill when it comes to lupus. We went back over the medications I missed, double checked my blood sugar listings and times I'd remembered to take my insulin. We caught everything up and by tonight (Saturday) I was able to get up and moving a bit. I finally kept a small amount of food inside.

Now what does this have to do with anything? Well this past August one of my way too many doctors said I was refusing to accept that my health was deteriorating and the many sicknesses were related to that deterioration. We had quite a fight actually and it later turned out I was yet again seriously ill but not due to deterioration. It was due to respiratory failure. Now I know the majority of my doctors have placed me on their "I can't fix her" list. If you've ever been on that list you know the one tell tale sign - the doctor says "I'll see you in six months." This basically translates to "I'll refill your scripts but I don't expect to see you again unless you're dying. Have a nice day." Apparently there are few things more frustrating to a doctor than a patient that just won't get well. Maybe it screws up their batting average or something.

Now on the one hand society tells us "Do not go gently into that good night. Rage, rage against the dying of the light" which I've been doing since the day I got my first diagnosis. But now that most of my doctors have placed me on their own personal "can't do nothin for her" list its become about my refusal to accept my own deterioration? Arghhh... How do you fight when your doctor doesn't think you should be fighting anymore? When is it time to give up?

This Time My Dog Drew Blood

It's 2:30AM and I'm deeply confused. This afternoon when I tried to stop my Lhasa Apso Herman from running to front door when the doorbell was rung he turned on me and bite me in 8 places on my hands so badly blood was running down my fingers. My wrist has swelled up and turned black and blue. Now if you've been following my blog you know this is not the first time I've had this problem but never to this extent. I guess its been slowly building up as each time he's attacked me its worse. The dog trainer I've worked with before emailed me a "bite scale" to access the level of possible change. The scale goes up to 5 and Herman teeters on the edges of 3-4. That means its possible to change his biting behavior but it will require extensive work on my part.

Its so hard to hard to understand how the quiet ball of fluff snoring beside me on the bed savaged me the way he did earlier in the day.  I try to keep the fact that he's an animal first in front of me at all times but he's also my companion. He sleeps beside me and goes wherever I go in the house. Now I can see that behaviors I thought were affection on his part were actually dominance.  He must go up the stairs ahead of me always. Must eat when and what I eat, refuses to remain house broken. Whenever he's not permitted to do what he wants he begins with a low warning growl.  If I ignore it and continue my behavior things escalate. The problem with today was there was no warning except to say "Let me go now or I'm going to bite you." 

Anyway now I'm at the point of trying to change this behavior or have him put down.  My hands are badly swollen and bruised and since the majority of the bites are on the palm of my left hand I can't close it.  I cry every time I look at him which makes me feel really stupid.  The Dog Whisperer says that dogs are initially a blank slate so any inappropriate behaviors that occur are the fault of the owner not the dog. That idea drives me nuts.  So I'll see what the dog trainer wants me to do and take it from there.  Meanwhile, he lies sleeping peacefully beside me and I'm sitting here so broke up I can't sleep.  Isn't it ironic?

The Grace of Peace

I marvel at the grace of peace. It comes to me rarely as I'm sure it does for most survivors of child abuse. The darker memories are what usually haunt me late at night/early in the morning. Memories of a drunken parent who'd rather lock me in a crate in the cold cellar than tuck me into bed on a cold winter's night. It's 4:30AM and I'm in my quilt room listening to Enya's music. It is as if the room has become something out of Narnia - a closet to step through into a completely changed room from the dark, depressing prison it was last year. It was a place of sorrow, sadness, pain, hopelessness and believed impeding death. A friend who had visited last yr. when I was so ill stopped by yesterday, sat down, smiled then said the entire vibe of the room had been replaced with joy.  She explained the true concept of feng shui and that everything has energy. Where something sits, from a box to a chair and how its used often dictates how the energy disperses. If ever there was proof of this its my quilting room. Did I mention I just got access to the room across the hall as my own too? Rooms of Ones Own?  I'm sure it's not what Virginia Woolf had in mind but since I don't have the money I'll take the space. 

I finally gave away the treadmill that's been taking up the majority of space in the small bedroom my daughter occupied many childhood years ago.  The treadmill had become an expensive clothes hanger combination resting place for the cats. The room itself had become that place every home has called "throw it in there and we'll sort it out later."  Later never seemed to come and the room just kept filling up.  Well in keeping with my motto "If I haven't used it in a year donate it or throw it away" I've been getting rid of things right and left.  The amount of space that's opening up is positively astonishing.  This tiny home I have hated for so long feels like a haven of peace and calm - no longer home crap home.  Of course, since I swing from one extreme to another I now rarely want to leave my "safe" house.  Its been 3 weeks since I last went out and then it was only for a doctor's appt.  My therapist feels this may not be healthy.  My friend says if I believe this is right for me at this time in my life then go with it. I think I'll go with my friend,s statement despite having to pay the therapist for her advice.  It's 5:30AM now and the snow is coming down harder.  This means I having a true and proper excuse for not leaving the house today.  It's my husband's day off so we can curl up under the blankets and inhale the comfort of each others presence.  Sleeping beside each other calms us and helps us feel safe. It is an abuse survivor thing for both of us, this need to feel safe in bed.  It is a gift we give to each other.

















 
 

It's My World and I'm Stuck In In

Leaving the house has been a struggle for me since my stroke 4 years. The stroke left me with right-side weakness, verbal aphasia (using the wrong word when I speak- like saying door when I mean desk), and worse of all, the need to wear an adult diaper 24/7. I know I’m fortunate to be able to walk, with assistance, and still drive. Leaving the house from December through April is just too hard – between rain, cold, snow and the general miserablness of the weather and how it all affects my body. I have to carry the 10lb. battery for my scooter out to my van because it may freeze at night. It’s now been 3 weeks since I left the house for anything other than a doctor’s appointment. I start out each day with the intention to leave the house and run an errand, pick up something the house needs from Home Depot; the usual stuff able-bodied people do every day. I’m not agoraphobic. I just can’t bring myself to do everything it takes to leave the house because it’s like planning to go to war. I bought a large and I do mean large purple shoulder bag shortly after the stroke. I figure purple and red are “I don’t give a damn” strength colors. I pack it with 2 bottles of water, 2 diapers, cell phone, note pad, several pens, a very large and heavy daybook full of doctor's addresses, day notes, business cards and anything else you can think of including tissues, medical file folders, information about medications and any other miscellaneous things that will help me feel safe out in the world. It can take up to a half-hour just to pack the bag. Then it’s time to get “me” ready. My physical difficulties cause me to go very slowly so that usually takes me 2 hours to shower, lotion up and get dressed so basically it takes about 3 hours altogether to get myself out the door and do an errand that may only take 15 minutes to go and do something. Ultimately I decide why bother? Wouldn’t you? A friend said I needed to decide what MY beliefs are. She didn’t mean religious beliefs but personal beliefs about why I think I still have do things my old able-bodied way. Why do I think I have to leave the house on a daily basis? I’m working hard on this business of reinventing myself. I’ve made it to the thinking hard about it stage.

A Room Of One's Own

I have lived with men my entire adult life, since the age of 17.  I'm now 57. In that time, including raising two kids I have never had an entire room I could call my own. I recently saw, in a DIY magazine, how a woman could build a small shelf area in the kitchen for her laptop with equally small book shelves above it.  I've had many spaces within rooms that I shared with LOTS of other people. This means that whatever was on my desk was considered open to be used by anyone.  Clothes, makeup, books, papers, pens...it felt like the more important the thing was to me the more likely it would be taken without my permission. At one point my then husband made a beautiful little box just large enough to hold small things that mattered with a lock. The problem of space created many many screaming arguments in my home.

My children grew up and moved out.  I divorced my starter husband and moved on to husband number two - who I've been happily married to for 13 years. Somewhere in my many rambling blogs I may have mentioned that after my last hospitalization I was forced to move our bed into the living room so I didn't have to walk up and down the stairs constantly.  While I was in the hospital my wonderful son (its great when you finally reconcile with your adult children and they forgive all your parental mistakes.)  I'm saying this somewhat with tongue in cheek. He, my daughter-in-law and a friends son moved everything from the bedroom into the living room. I put my sleeper sofa out in front of my house with a sign saying FREE and it was gone in 1 hour!  At first I was really depressed. Only old really sick people slept in their living rooms. To be honest although I've lived in my house for over 25 years I've never liked it and at times have hated it. It has memories that make me want to run screaming into the night. I didn't put much energy into repairs,  upgrades, whatever. I hated the house and I let the house know it.  In retrospect I see now it totally reflected my depressed moods.

I never understood the whole feng shui thing. You put a chair down where it works best for you and that's that. But some massive kind of energy changed when we moved the bed into the living room. It started when I turned our former bedroom into a quilt studio.  I've been a quilter since childhood, being sent every summer to an older woman who would teach me various sewing technique including quilting, crocheting, knitting and even something called tatting.  I learned to stories of how quilts helped guide slaves to and through the underground railroad.  I had shelves and shelves of fabric, fabric in boxes, fabric stashed in closets. Suddenly I could put it all in one place. My sewing table, my cutting table and ironing space, the 100+ quilt books, I was able to bring everything, every ruler and template together.  I was able to raise the blinds all the way up which I could never do when it was a bedroom. Naked and open window don't work well together. I HAD A ROOM OF MY OWN!!! http://tinyurl.com/3ycaaj8  Virgina Woolf was right. OK so it took me a very long time to get here and I don't have the money she said should go with the room but I now have TWO rooms. The small room across the hall has always been the "throw it in there and we'll deal with it later" room. A massive treadmill took up most of the room.  I used it as a clothes hanger.  It worked fine I just never used it.  Suddenly the cleaning woman asked if she  could have it and my only price was she had to get someone to take it away. It was gone in three days and there was this wonderful small space across the hall from the quilt room. I was able to move all my paperwork, bills and everything else that I felt was negatively effecting the quilt space into the little room.  I get the feng shui thing now. 

As my mood improved it seemed the rooms got lighter, brighter. I usually hate people who say things like this.  I consider them wimps who refuse to face the realities of life.  Life is bleak and the universe is just waiting to slam you when you least expect it. So you can imagine how odd I find these warm, fuzzy feelings.  Its just not me. Although it feels great I live in terror of these feelings just stopping when I adjust to all the anti-deps.  So to protect myself I figure the best thing to do is to keep the basic darkness inside me going.  This blog post started out talking about the gift of space.  The bottom line is my husband said he only needs enough space to sit with his lap top and he really means it.  Even after I dragged him all over the house demanding he tell me if this or that corner really mattered to him.  We've been married 13 years so I figure I'm totally free to bring out the crazy now and then.  He's helped me lug and lift boxes, tables, chairs to rearrange the rooms.  Since neither of us have particularly good backs its been a slow undertaking but we've finally moved everything around to where we want it.  Well to where "i" want it.  I'm off to do a bit of quilting.  After all its only 11pm.  Thanks for reading.