They Tell Me I'm Dying But I've Decided They're Wrong

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

2011-06-01T04:53:00.006-04:00

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

2011-05-30T04:40:00.002-04:00

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

2011-04-24T04:23:00.000-04:00

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

2011-03-31T05:21:00.002-04:00

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

2011-01-24T01:04:00.003-05:00

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

2011-01-20T03:08:00.000-05:00

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

2011-01-18T05:45:00.000-05:00

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

2011-01-17T19:13:00.000-05:00

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

2011-01-08T23:08:00.000-05:00

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.

JUST MY OPINION

2010-12-28T17:39:00.003-05:00

Taken from my website "How to be Disabled In America" http://www.skcllc.net/

The blizzard of 2010 is all over the news with airports closed, roads blocked, streets flooded and electricity out. Whenever catastrophes like this happen my first thought is "What about the disabled?" I'm more fortunate than many in that I have a local man who comes over and shovels me out for a small charge. But I'm very aware that I'm left at his mercy. I pace from window to window while I wait for him to arrive, looking out to see if he's started yet. There's no getting to my van with all that snow in the waY. I start speaking to myself saying "When can I get out? When can I get out?" I run through my mind to be sure I've got enough supplies for a few days. No matter what the season I try to make sure I've got extra groceries and staples like paper towels and canned food in the house. I live in terror of being stuck in the house and running out of something I really need, like oxygen. I recently discovered a food delivery service called Peapod (http://www.peapod.com). I order my groceries online, pick the best delivery time and they show up at my door a day or two later. Again, I always order extra this or that so if I'm stuck because of weather or health, there are always some basics in the house. I think alot about people who don't have my options. How do they cope? Screaming might not help but it does relieve the tension. Just remember your neighbors might misunderstand. If you're reading this do you have any techniques or ideas that you use to cope with bad weather as a disabled person? Write to me at skemp@skcllc.net with the subject line "What About the Disabled?" and let me know. By the way, rain when you're wheel chair bound sucks.too.

WE CAN'T ALL BE AS BRAVE AS ELIZABETH EDWARDS

2010-12-22T01:49:00.000-05:00

WE CAN'T ALL BE AS BRAVE AS ELIZABETH EDWARDS
From my webpage: http://www.skcllc.net/ - How to Be Disabled In America

Edgy is one of those words like pornography. I don't know how to define it but I know it when I see it. It's my intention to make this website "edgy." I'm a cranky, pissed off disabled person. I don't consider becoming disabled to have been a life-enlightening moment. Frankly, I'd rather have the ability to walk freely back. When people tell me "I'm an inspiration because of how well I manage this change in my life" I want to tell then to stop by my house around 3AM and see how well I'm handling things then. There's a whole lot to be angry about (don't even get me started on the Americans with Disabilities Act) but to let you know that I'm not entirely dark and cranky (even though I'm an African-American) I wanted to share two of my favorite videos with you. Every day the local college track team runs past my house. Watching them run is like watching gazelles running across the savannah-heartbreakingly beautiful, all the more for knowing I'll never run like that again. When I told a friend how sad I was feeling she sent me a video called "Where the Hell Is Matt Dancing-2008." Matt travels around the world getting various cultures to dance with him. It gets me smiling and crying at the same time. My other favorite video is also a dance one. I'm a sucker for people willing to make themselves look foolish in the name of having a good time and showing friends they love them. Its called "Wedding Dancers." This is as bright and sunny as I get at 1AM on a Wednesday morning. As I write and send more information you'll probably find yourself wondering "what happened to that semi-happy disabled woman?"

GIMME THAT OLD TIME ACCIDENTAL SPEED-WAHOO!

2010-12-13T03:38:00.000-05:00

I take something in the vicinity of 37 pills a day, half of which are pain killers. This many pain killers makes me positively narcoleptic unless my mind is fully engaged. In other words I can drive safely when I get home and sit for more than 10 minutes I fall dead asleep. I almost drowned in plate of mashed potatoes when I was in the hospital. So one of my doctors the newest drug for narcoleptics - Neurvigil. She checked me out on a low dosage and then upped it big time. I got the prescription filled, didn't pay attention to the time and popped one at noon. Now here I am at 3AM wide awake and CLEANING THE REFRIGERATOR!!! That's when you know you're over the edge. I took everything out and put it on the floor and washed all the shelves. The frig looks great and I've still got energy to burn. I'm actually thinking of vacuuming the living room.

When I was in my twenties I worked way too many part time jobs, some at night. I used to buy speed from a woman I worked with. I would write her a CHECK and then on the memo line write "speed." Arghhh... Someone must have been watching over me because its a miracle I didn't get busted.

Another story - in my twenties I bounced a check and then forgot about it. Months later a sheriff's deputy came to my apartment to arrest me for the check unless I covered it immediately. I was terrified with visions of being dragged off to jail so blurted out "Will you take a check?" He laughed so hard he had to step outside to catch his breath then gave me til the end of the week to get the cash. Believe it or not years later we became good friends when he ran for office. I helped him with his campaign . Each time we meet we say will you take a check?

I love having this much energy. I rarely get out of bed before noon because the pills and the illnesses knock me out. I've learned to make appointments for after 2PM and do as much as I can on the Internet. If you've never heard of Peapod check it out. You order groceries on line and then deliver them to your house. Yet another great thing the Internet has done for the disabled.

Which reminds me - I'm completely changing my website to provide disabled information from the perspective of someone that can't be Elizabeth Edwards. In other words we can't all keep a stiff upper lip and serve to reflect nothing but the positive in times of serious illness. I'm trying to get up the courage to write the piece but I thought out of respect I'd wait a week or two after her funeral. I'll let you know when the web page goes up.

It's Not What I Expected - November 25, 2010

2010-11-25T10:40:00.002-05:00

I did not expect to have such a difficult time with the idea of feeling better. If you've spent most of your life dwelling in the dark places (you know who you are out there) then coming out into the light is a truly scary experience and that's where I am right now. I'm feeling genuinely good since the August hospitalization. That is to say great emotionally. My cadre of doctors continue to tell me I should be dead and I swear I'm not making that up. Some marvel that I'm alive and some seem genuinely confused. One of them gets so sad about the whole mess that I wind up comforting him by saying I'm actually feeling a little worse for the wear. No one should feel compelled to comfort their doctor but then again they're human too. I always question which type of doctor I would prefer - a House type personality or the general doctor personality - 15 second perfunctory visit, glance at the chart and scarcely remembering who you are or what meds they've prescribed. Oh yeah, did have my mammogram yesterday which is tantamount to smashing my breasts between two bricks and being told to hold my breath while doing so. Despite have to have several films because as the tech so kindly said "your breasts are wrinkly so it makes getting the picture difficult."

Anyway, saw a total of six doctors this week. Can you believe it? I've developed a nasty side effect and so far no one has been able to figure out how to fix it. Stop reading now if you gross out easily. It's called fecal incontinence which means I have no sensation of having a bowl movement. I wear an adult diaper 24/7 and live in constant fear that this will happen while I'm out in public with only the smell to alert me. Talk about your hidden illness. I KNOW there are other people out there with this problem (thank you Dr. Oz) but like me its just not something discussed in polite company. I've even had a couple of doctors grimace when I talk about it. For now one doctor has me off ALL carbonated drinks for the next two weeks as a test. He thinks that carbonation can be a major trigger for severe diarrhea. I'm open to trying anything. I finally got over the agoraphobia and now this. Whine whine whine. The thing is the concept of not being depressed is so new to me that this latest physical issue gives me permission to drop right back into old habits - hiding out and staying in bed. After all who wouldn't be depressed about crapping all over themself without warning. Yikes! Still I'm fighting and living on Imodium and being hopeful the doctor is right about carbonation. But consider this...if a doctor told you you were dying but still said you should give up the foods and drinks you really enjoy would you? You life is shortened anyway so why try? I wrestle with this one every day.

I'm off to my son's and daughter-in-law for Thanksgiving dinner. He put himself through college as a cook and is fantastic at it. After so many years of making dinners it wonderful to have someone cook for me.

The Truth About Retirement

2010-10-03T13:18:00.000-04:00

A long time Facebook friend wrote that her husband was about to retire. It took everything I had to not shout "Tell him not to do it!" Since I started working at the age of 14 retirement has been held out to me as the be all and end all of our lives. It would be a time when you could finally do the things you'd dreamed of. TV shows us retired people living in beautiful private communities, golfing, going on cruises or traveling around the world. These commercials of course, never mention you need money to do any of these things.

I was raised by a child of the depression who often told me what life was like before social security. There were no fall backs like unemployment, welfare or social security. Families doubled and tripled up in tiny apartments. There were nights when there simply was no food and that was that. You couldn't say a bad word around my mother about Franklin Roosevelt, the father of social security I think. Between social security and a pension, she said, I would be set for life. When I vested my time with my State job I had no idea what it actually meant or why people were so happy for me. It was still a time of "set for life" jobs. Being a State employee was considered so powerful that you could walk into a car showroom and buy a car purely on the power of being a State employee. Those really were the good old days.

I left my job as an appointee of Governor George Pataki (see blog history) courtesy of Eliot Spitzer sending me a letter saying I had two weeks to get out of my office. What goes around comes around doesn't it? Anyway I decided to start my own grants business but quickly learned that the old timers who said things like "At least you've got your health" weren't kidding. I had to close the business but what I learned quickly was how hard it is for a Type A personality to operate in a world that has little patience for retired people without titles. I still miss water cooler Mondays where you stand around and talk about what you did over the weekend. I actually miss meetings because what I didn't realize is they're a form of social networking too especially if you actually achieve something. I can honestly say I miss almost everything about work. OK on snowy winter days I'm delighted that I don't have to clear the snow off my car or drive on scary slippery streets. I've been retired for going on four years now and have been miserable every step of the way which maybe why my health has been so bad. But something shifted inside me in the last few months.

No miracles but perhaps a quiet acceptance of change. My husband said he's looking forward to retiring one day because it will mean the end of doing things he doesn't want to do and his statement really clicked with me. Yes I'm aware that this could also mean the Prozac and Wellbutrin are finally working. I can only say something turned over inside me, something changed. Maybe its having to sleep in the living room (more about that in the next entry) or just finally understanding what feng shui means. Either way I can honestly say I think I feel better and if you've been following my blog you know this is an earth shattering statement for me. However my health still sucks so I continue to have something to complain about...LOL!

Up Again at 2am

2010-09-19T07:46:00.000-04:00

I've been writing inside my head so much I decided it was time to pull things out and put them on paper. I'm just out of the hospital again after a two and half week stay. Each time this happens I'm hopeful that the shock and humiliation of it all will result in my changing what I believe are some unhealthy behaviors. It almost never does although after the 2007 intubation I finally stopped smoking. I'd been a smoker since the age of 14 so believe me it was no small feat. However, I'd wound up on oxygen 24/7 and frankly couldn't figure out how to use a lighter around oxygen. I had visions of people diving out windows every time they saw me try to light up. So I locked the image of the intubation tube down my throat and thought constantly of the movie Alien. I kept waiting for something to come out of my stomach. I'd tried everything including Chantix but nothing worked. But visualizing that tube down my throat was more horrifying than anything I could possible think of related to smoking. I've been a non-smoker for 3 years now and there's not a day I don't miss it.
Working seriously on self-change is exhausting!

This time I went to the coronary care unit because they thought my heart was going to stop. And still I come out of these events able to talk and think and function. The doctors always say they're amazed but my husband tells them "If you're surprised she's alive then you don't know my wife." I think he's afraid I'll come back and haunt him if he pulls the plug. Still I took the realization that my bed would have to be moved to living room very hard. I'm adjusting and the house actually looks larger. We put our beautiful sofa bed out on the curb with a free for the taking sign. It was gone within an hour. Slowly but surely I'm working on this healing thing.

Still Alive

2010-04-13T22:24:00.001-04:00

Just a quick note to say I'm still alive. Just finished my income taxes and am staggered at the amount I spent on medications and medical bills in 2009 - almost $10,000 and that's with "good" health insurance. Never thought I'd agree with a Democrat but Obama's right - the medical system is out of control. Thank you for the kind supportive emails. I'm hanging in there. The Prozac is really starting to work. I volunteered to worth with a local disability advocates group. The irony has not escaped my notice. As my therapist said - the years will go by whether I decide to do something or not.

A Different Point of View On Race

2010-03-31T19:58:00.000-04:00

I have strong opinions about race. I'm allowed since I'm black. I remember my mother being absolutely appalled when we kids (I was a teenager in the sixties) started called ourselves black. She said when she was a teenager she was delighted when whites finally started calling blacks Negroes. It was a tremendous step up from nigger. She was born in 1910. I was born in 1953. Martin Luther King had not gone to the mountain top yet so things were still pretty ugly in the early 60's. I spent most of my time being called white girl and being told I talked like a white person. But at home my mother insisted I speak proper English. She bought a set of Encyclopedia (which back then was the equivalent of buying a used car) and demanded I read them from cover to cover. I think this was to compensate for her brutal abuse but that's another story.

All of this training led to my dropping out of high school. You see I went to the guidance counselor when I was in high school and said I wanted to go to the Philadelphia School of Music to learn how to be an orchestra conductor. She gently said that my people generally went to the local training school to learn how to be top notch cleaners, janitors and maybe if I worked real hard - a nurses aide. I dropped out the next day and ran away from home. Long story short, I came back a year later pregnant. Anyway I spent most of my adult life overcoming many of the really dumb mistakes I made in my teens. I went from being a high school dropout to graduating from Vassar in my late thirties. I gave the commencement address at the local community college I graduated from, an experience I highly recommend. It was phenomenal! I went from being a teenage welfare mother to being appointed Assistant Welfare Commissioner for my state. And then everything came to a halt. I've been frozen like this for the past three years. You know how the old ones would say "Well at least you've got your health." I always thought that was such a ridiculously weird thing to say but I totally get it now. My brain is as much on fire with ideas as it was in my 30's and 40's. Writing, books, articles, editorials, thoughts, thoughts, thoughts. The difference is my bad health has left me frozen, frightened, afraid I'll be hurt by someone if I say the wrong thing. So this is my first attempt to break out of that icy encasement.

For 25+ years I worked in the grants/non-profit field. Too often I saw organizations given breaks because they were minority operated and the white folks funding them didn't want to risk being called racist. I saw an article the other day about ACORN closing and that's what set me to thinking. Everyone knew it was poorly managed long before the stupid setup they got caught in. But why didn't anyone say something? I can't tell you how many times I've seen gross mismanagement that no one would address. At one point in my career I was hired because I was black and willing to take on the organizations that needed a serious house cleaning. To me the federal regulations were not grey, they were black and white and strict. They did not have wiggle room. Looking back there were times I should have allowed a little wiggle rather than shut an organization down. But I was so afraid of getting it wrong that the Federal regulations became a bible to me. Still I did a great deal of teaching about how to manage grants and I'm proud of that. Any organization that came under my tutelage was expected to adhere to the regulations governing their particular grant. I think one of the biggest mistakes and changes is that back in the day when a federal or state grant was given the organization was expected to spend 3 to 5 days in that state's capital being trained or in Washington if it was a federal grant. As time passed this changed from face to face training to conferences calls to online training to being sent a 300 page manual with the "suggestion" the grantee review it. To be given a quarter million dollar grant with little to no training is a setup for failure. To move from that to fear of saying there are mistakes is an even greater setup for failure.

So this is me, stepping out of the ice cave to say its way past time to stop expecting to be given breaks based purely on being on the side of the angels or because of race when you screw up. It may be a part of the overall scheme of things but the days of it being the predominate reason for looking the other way when serious mistakes are being made should be over. Deep breath.....whew.

I Made It Through the Winter

2010-03-23T17:49:00.000-04:00

WAHOO! I made it through the winter. Believe me when someone tells you you may only have six months to live, living a year is a very big deal. I saw the pulmonologist who was shocked at how well I was. I'm working with one lung but that's much better than they initially expected. You have to be below 50% lung capacity to even be considered for a transplant. I feel like I spent the entire winter trying to climb out of a deep well and now I've finally got my fingers on the edge and may be able to actually pull myself out soon. First, all jokes aside, let's hear it for Prozac. It has literally been a life saver for me. It ain't easy when you're feeling suicidal and there are two, count 'em two high bridges within walking distance of your house. So to avoid the bridges I spent most of my time curled up in my bed watching DVDs including the complete seasons of Sex and the City. I've even got parts of conversations memorized. I know more about the characters personalities than the actors do. lt always amazes me how easy it is to lose muscle mass when you stay in bed for even a brief period of time. Of course my wonderful devoted husband took his usual extraordinary care of me. Things got so bad that at one point he had to feed me. All I could eat was applesauce because of an infected throat. A long time ago a therapist told me "Never underestimate the importance of just being able to get out of bed in the morning." I totally didn't get it back then but I sure do now. The first thing I did (after I took a much needed shower)was call a good friend who works at a non-profit and say "I need somebody to help." I'll be volunteering for two hours a week helping...wait for it...the disabled. Since I've been fighting the label of disabled for ten years I find this particularly ironic. Don't tell me the God's don't have a sense of humour. I know that helping others for those two hours is going to be really tough physically but I've got to get outside of myself, if you know what I mean. I've got to be reminded that there are others who need help, who are in worse shape than me. So maybe I can help them by just talking.

You remember my promise to myself to get financially straight by the end of the year? Well I paid off a major credit card this month. I'm trying to not look at my debt as a whole. Its too overwhelming. So I started with the lowest credit card and am working my way up the list. I don't care what the economic pundits say, there ain't no jobs out there! My husband has been searching for nine months now and so far had only had three interviews. So many people showed up that it's almost not worth the effort. But he keeps trying and I'm deeply grateful for all he does. He went to a job fair in February and there were close to 3,000 people there.

Many thanks for the kind and supportive emails telling me to hang in. Things like that really matter when you're down. It keeps you going. I've spent three years trying to pull myself together for this journey. I think the journey's about to begin.

My Absence

2010-02-19T22:53:00.000-05:00

Please pardon my absence on line. Sometimes my illness get the the better of me. I’m able to sit up now at the computer for brief periods of time and expect to be back to myself in another week or so. This time it was a severely infected throat, which the lupus wouldn’t let heal followed by the temporary loss of the use of my right hand. You can’t make this stuff up. Hope all’s well with you and yours. Susan

This Astonishes Me

2010-02-05T22:07:00.000-05:00

I realized today that I have absolutely no reason to get out of bed. If it wasn't for Herman needing to go outside and then be fed twice a day I doubt I'd get out of bed at all. It's astonishing! I was go go go for so many years - college college work work work and suddenly it all came to a grinding halt and here I am am. Standing still.

I went to check my email and there were 3 requests for grant searches. Since I don't believe in coincidences I've got to believe that the universe is speaking to me...rather loudly. It seems to be yelling GET UP!

Herman and I Are Down for the Count

2010-01-08T23:36:00.000-05:00

They say that sleeping for long periods of time is an example of being depressed. Well I can't drag myself out of bed before 1PM most days. It doesn't bother my dog Herman at all because he's adopted my schedule and sleeps as long as I do. The thing is that it's his sleeping so long that bother's me. A dog shouldn't sleep so long. Even if he's just out on the backyard run he shouldn't sleep so long but he wants to be where I am and I'm in bed. I haven't left the house in a week, sometimes two weeks if I don't have a doctor's appointment. Someone asked me what terrible thing would happen if I left the house and I said someone might recognize me and ask what I'm doing these days or ask how I am. I couldn't bear saying I'm doing absolutely nothing. I can think of things I could or should do but I'm not. It takes too damn much energy to even get dressed. In part I'm on a new anti-depressant which makes me sleepy but I'm supposed to reach a point of adjustment. I sound so self-pitying I don't think I could stand to read this if someone else was writing it. But even if it was 1pm I did get up and a therapist once said never under estimate the importance of just getting up. So I did manage to face another day. I'm hoping that I'm getting better bit by bit and just can't see it.

A Quick Note

2010-01-01T23:10:00.000-05:00

Just wanted to say Happy New Year to you all. You already know my resolution (to be in a better place at the end of 2010) and I'm wishing you all luck with whatever resolutions you may have made for this new year. Just watching the 11pm news, so much violence, so much death. It definitely makes you sit up and take a longer look at yourself. Somehow your life isn't quite so bad in the face of what many are struggling with. It's humbling.

Where I Want to Be In One Year

2009-12-31T18:13:00.000-05:00

It's New Years Eve 2009 and I'm miserable. I have more bills than money, my health sucks and my husband can't find a job in the field he studied for. I am absolutely determined to change all this in the coming year. Now understand I don't mean I'm going to win the lottery or my husband will magically find a job. What I mean is I'm going to find a way to be satisfied with where I'm at. Remember I was told I was dying and had about 6 months to a year to live. The doctor ultimately admitted, although he had no explanation for it my lungs were better than he expected and I was functioning at 50%. He expected me to be much lower than that. People from everywhere sent me prayers and I did a fair amount of praying myself. Something changed me inside. Despite all that I've been miserable all day. I wait all month for my pension check and its gone before I get it. So I'm determined that in 2010 I'm going to get a handle on my money and figure out where its running off to. I'm going to adhere to a strict budget and give myself an allowance. I'm going to face the large amount of money that my medical bills take each month. Facing this means facing the illnesses the medicine takes care of and that's a tough one. Telling myself repeatedly that I'm better off than many doesn't work. I suspect it doesn't work for most people struggling through tough times. But I'm going to figure out how to get through this and will write about it here. As I've said before, I'm going to figure out who retired Susan is and that includes figuring out who Susan In Control is. I've been wrapped about this big rock for the past 3 years and its been rolling me instead of me rolling it.

Now don't get me wrong. There aren't going to be magic changes. I figure if at some point the Prozac starts working that's going to help alot. A big part of all this is that I've never failed at anything in my entire adult life. I've had set backs but failure is simply not a part of my thinking. I have to find a way to move beyond the failure of my business and move on to the original dream...the dream that drove me to work all night and go to college all day. It never went away. I just assumed it was too late to pursue it. Instead I got in touch with my college professor and asked a hard question. Is it too late for a 56 year old woman to become a published writer. He looked at me as if I lost my mind and said "Of Course Not!" So I'm going take his response and try to write just a little each day on the novel that's been rolling around inside my head for years. Cross your fingers for me that at the end of 2010 instead of frustration I'll have a completed novel.

Did You Know Its Possible to Dislocate Your Foot?

2009-12-26T17:41:00.000-05:00

Well I went to the foot doctor and it turns out my foot's dislocated. My toes separated from my foot! Who knew? I didn't even know that was possible. The doctor says he's going to put a caste on the foot but didn't go into alot of details because first he has to cure the blister. All of this is scary stuff. The blister is on the toe bone and its been getting larger. Once we fix the blister (because I'll be damned if I'll lose my foot over a blister) then we'll cast the foot. Stay tuned for how he'll put the foot back together. I'm having some pretty horrifying images in my head like snapping it all back together again. Yikes!

I'm fighting the depression hard. Some days it wins and some days I win. You can tell when I win because I manage to write in my blog. I can only hope you're not sick of my bitching and whining. Hang in there with me. I WILL overcome this. Have you ever considered how much of what you do focuses around work? If you rarely left the house how often would you wash up, dress up, put on makeup, all the things that are a part preparing for work each day? We think of not having to do those things on the weekend as a relief. And getting a vacation break as a great time to not have to do those things. I greatly miss the work world and all the social things that go with it. I'm trying to figure out what you do when you don't have the work world. I'm genuinely baffled by this. My New Years resolution is to leave the house more often. I'm becoming way too comfortable with staying home and I think I'm bordering on agoraphobia which is definitely not the direction I want to go in.

Hang in there with me folks. I'm still searching for answers. If I can figure out the things that are blocking me (health issues, inertia) I can overcome all the other things.

Finding Time to Write

2009-12-20T14:01:00.000-05:00

It's surprising how motivating it can be knowing people are actually reading what I write. I've switched around to writing first thing and then facing everything else I have to deal within the day. Rather than think of my writing as a self-pitying tirade I know (from the comments) that there are other's out there dealing with chronic illnesses so on I go. I've got a theory about some people who appear mentally ill and walk around talking to themselves and won't talk to others. I think they're in pain. Imagine having lupus or fibromyalgia or rheumatoid arthritis and being unable to get the medical care or medicine that would help with that excruciating pain? The cold you're living in only makes it worse. Who would you trust to tell about the problem? It maybe a catch-22. The colder it gets the worse the problem.

I hate dealing with money. There never seems to be enough no matter how I try to slice up the month. Being on a fixed income from disability and pension check means there's nothing coming in in the future, no raise, no bonus, this is it. Since I'm only 56 its a long time to deal with one income. I know I'm luckier than so many since my pension and disability are based on the final income I received from NYS while working as an appointee. And I have my husbands income which I know will improve once the economy improves. But for this moment its not enough and I want to scream. Its my job to make the money thing work. He goes out the door each night and making the budget work is my job. I spent 8 HOURS going over bills and budgets and goddess knows what else and I still couldn't get it right. Where do people get their magic money at Christmas time? Do they max out their credit cards? Do they pick a bill they just don't pay? We don't even celebrate Christmas time anymore. The children are grown so its just a simple gift for one another. No tree because the cats would climb it and who knows what Herman would do to it. What baffles me even more are people who go shopping after Christmas. I'm talking about ordinary people. Where does that money come from? Do they wait to buy all their gifts? I know I think way too much about money and I don't know how to stop it. When you've had money and then you don't have money it can be positively painful. To go from a six figure salary to just being able to pay your bills messes with your head. I find myself looking at the tv and thinking "I bet Katie Couric takes a town car home. I bet Whoppi Goldberg doesn't worry about bills." Now Whoopi is one of my favorite movie stars and I know she came up through tough times. There are people you just have to give their props to. They deserve everything they get because they worked hard for it. Still its easy to get lost in the jealousy and hard to fight.

When my children were small I tried to give them these amazing Christmases which would practically bankrupt me. When Christmas was over I was usually left with a stack of bad checks and the fear of being arrested. I look back on that time and wonder what the hell got into me. I wanted to give them something better than I had which I guess everybody has tried to do. This morning I saw Sting talking about the exact same thing. His memories of how his childhood Christmases didn't match his expectations and how we don't recognize the reality of that. I have alot of respect for him saying that. Sometimes we only see these movie and rock stars as they are right now and not how they got here from there.

Tomorrow is foot doctor day. Since my toes went right and my foot went left the primary doctor says that's what happens to people with rheumatoid arthritis and there's nothing that can be done. I hope she's wrong. Even an orthotic for my sneaker would stop me from constantly falling over. Cross your fingers for me.

Late at Night Again

2009-12-10T03:09:00.000-05:00

It's 3:05am and its been a bad day. When I got out of bed this morning I fell right to the floor. Turned out my blood sugar had fallen to 70 which would have been OK except it was above 600+ the night before. It made sense to take additional insulin but I guess I over did it. All I could think of was what if Stephen hadn't been there? How long would I have laid on the floor? We tested all day looking for a balance and things seemed to balance by late afternoon around 300 something. It must be so scary for people to be alone but doubly so for people who are sick. All day Stephen took care of me, making me lunch, bringing iced tea, making me a sandwich and just sitting with his laptop while watching over me. He says its his job, his responsibility. It amazes me but he never seems to tire of it, never yells at me, just says how grateful he is that I love him. My mother often told me that I was too ugly to ever expect to marry so I didn't. But here I am married to this extraordinary man who told the INS that his only reason for coming to America was to care for me and he's been good to his word. Its late at night and I always find it difficult not to sink into that sadness that comes from examining ones life too closely. Each physical setback is harder and harder to overcome, harder to convince myself that I'll climb back over the wall once again. I know I will but it takes a bit of time to convince ones self. Hang in there with me.

Bits and Pieces

2009-12-01T00:15:00.000-05:00

I was watching this show called Hoarders on A&E. I think anyone who watched jumped up and cleaned off the kitchen table. It has that effect on you. Then I cleaned off the kitchen counters, then the top of the little freezer until things were basically cleaner. Its so strong the way things effect you when you think they have nothing to do with you. Somewhere buried deep inside you something is triggered and you dissolve in a torrent of tears.

My husband: My husband is a rock and I am his water. I am the water that constantly flows around him. Sometimes the water is slow and smooth, sometimes its a torrent, sometimes its a hurricane. These are metaphors for madness. Toss in my terrible physical health and you've got a very difficult person to live with and yet he stands firm against it all. I have times when he has to sponge bath me because I can't stand up long enough to take a shower. He puts on my compression stockings and then dresses me with pants and a shirt. He makes sure I take my 39 pills throughout the day. I'm deeply grateful and at times furious. No one wants to need a caretaker. I've tried to let go of the image of the strong woman I used to be who went to the gym at 5am every day and after being on weight lifting machines would speed walk to the gym, work out on the weight machines and then slowly walk back home for a cool down. I loved greeting each morning that way, seeing the sunrise, feeling the coolness of the wind on my skin. To have gone from that to having to use a seat In the bathroom so I can sit down safely and wash up makes me want to scream at the top of my lungs....WHERE IS THE WOMAN I USED TO BE!!!!! Now I do go to therapy and have a wonderful therapist whose been trying for two years to help me face the loss of who I used to me.

Wow...I started writing about how wonderful my husband is and slid into writing about how angry I am. This is certainly something in to consider at my next therapy session. Anyway, right now we're working on who "retired Susan" is. In many ways she's completely different from working Susan. We're all brainwashed think of retirement as hanging out on the golf course or sailing off on a cruise but the truth is far from it. I can't afford to do any of those things for starters. Retirement means you're on a fixed income. There'll be no more raises so your budget has to meet the fact that your locked in. It can be really scary. The other part is I was a type A worker moving at the speed of light. If you wanted something done that one else could do give it to Susan. I loved having that reputation. Going from Type A to sitting in an armchair is not my style. I loved wearing expensive business suits, going to meetings and talking about my weekend with my co-workers on Monday mornings. Before you say "there's still alot you can do" remember I'm retired AND disabled.

Since I've had enough of "self-pity retired Susan" I've started reaching out to non-profit organizations that can use my 25+ years of finding, writing, training, you name it, about grants. I found this great online thing called Volunteer Match. For instance I'm working on line with a group that needs help with their grant writing skills. For getting out of the house my daughter told me to "just put the damn diaper on" and leave the house. I had the idea of adding brightly coloured granny panties in case I finally had the car accident that all our mothers have been warning us about since we were old enough to drive. I joined another wonderful organization (the local chapter) called AAUW - Association of American University Women. Unfortunately I'm finding getting out of the house much harder. Between being too sick to get out of bed and being paralzyed by agrophobia I've missed two meetings. None the less I believe I can do this. I went to a writers group meeting at the library and was really I'm impressed with the calibar of writing and they like the beginning chapters of my novel. I'm not up to writing about that in my blog yet but I will hopefully be one day. So dear readers I'm trying. I figure if I write in my blog consistently it will force me to get healthier or at least sit up in bed. Hang in there with me and thanks for the encouraging comments.

Giving Up My Dog Herman

2009-11-26T21:06:00.000-05:00

Herman's been away at boot camp this past week and a half. Boot camp is defined as staying with a woman that has a better grasp of how to control dogs than I do. She has 2 or 3 dogs and apparently Herman is having a ball romping in the fenced in back yard with the other dogs, rolling around in the living room and sleeping in his now appropriately sized crate (as compared to the too small one I'd been putting him in-and yes that was yet another source of guilt). The woman and I have spoken several times and it seems clear that she can provide him with the kind of energetic life he needs. I can't even walk him. It takes alot to get him across the deck and onto the run. I've discussed it with my children and my daughter said would I be willing to live with a boyfriend that only hit me a couple of times a month which is the equivalent of Herman biting me hard a couple of times a month. I've been doing some online reading about Lhasa Apsos and they're not sweet gentle dogs. In fact they tend to want to dominate the situation they live in and do not like being told to not do something. Not exactly the best type of pet for a disabled woman with mobility issues. So I'm seriously considering letting Herman stay with the family he's currently boarding with. Did I mention this is killing me emotionally?

One of the things I didn't know about myself until recently is that I'm very social. Finding myself home alone for hours is actually painful to me. Herman is company. Despite knowing he doesn't understand a word I say I talk at him incessantly. He'd tip his head and look at me as if to say that he did actually understand me. He is my company and companion. Giving him up means going back to spending alot of time alone again. I'm not so altruistic as to be able to just give the dog away because that's what's best for him. I'm really struggling with this. But I find myself beginning to fear being bitten more and more. When we curl up in bed together he growls at me if I expect him to move over. Given that he's only 8 months old this is not good. I keep wondering how he'll behave at the age of 1 year. I need to make a decision soon. At least I know he'll go to a really good home if I give him up.

I've Become One of Those Women That Calls Her Dog Sweetie

2009-11-19T19:53:00.000-05:00

In my own defense I'd like to point out that these emotions sneaked up on me. Herman, my dog, has been behaving horribly, biting me hard enough to draw blood. He's been incredibly disobedient, destroying my glasses and numerous other things. A good friend runs a dog boarding and training business and suggested that Herman spend two weeks with her pack of dogs and I agreed. I didn't make it through one damn day without calling her to check on my dog. I needed to know he's OK. She was wonderfully patient explaining how Herman has already begun to change some of his negative behaviors. I'm the problem.

She pointed out that he's overweight. Well hell so am I! What's the problem? But I honestly do know it can be a problem for a pet. She explained that the mixture of wet and dry dog food I give him is great but stop feeding him all the people food. My motto has been "Whenever I eat Herman eats. Whatever I eat Herman eats." My first thought was "Who am I going to eat with now?" I had no idea I'd become so dependent upon the company of a dog. My husband works the night shift at a group home. When he comes home in the mornings he wants to play his computer games for awhile to unwind and then go to sleep. A thousand years ago when I worked the midnight shift in a hospital I'd wake up in two hours increments. He sleeps straight through for six hours. I've never seen anything like it. Consequently I'm left in total silent alone.

I started out fascinated by this then soon began talking to myself. From there I went to talking to the cat, who I might say NEVER responded to a single question I posed. Its like solitary confinement. Television is canned conversation. You have all these thoughts and nowhere to put them; Consider blogging she said slyly. Anyway Herman became my person to talk to. I've tried taking him for a drive in the car with me but each time so far he's thrown up. I can personally attest to how unpleasant it is to have a dog throw up when your going 50 miles an hour. I don't understand people with their dogs hanging out the car window. The dog looks happy as hell. How'd they get them to do that? I can't even get my dog to come when I call him. So I'm officially a woman that owns a dog she talks to. My mother took care of my dog after I ran away from home. When I'd visit years later she would talk to the dog as he was a person and I arrogantly laughed at her behavior. Now here I am living the retirement life, behaving strangely. Just wait. Your time will come. You'll get so desperate to hear the sound of another voice you'll go sit in a Starbucks and when you sit down you'll realize you don't even like coffee. Just like that Boston bar but instead of Norm they'll yell your name and you'll be delighted.

I feel sicker today. My ankle is so badly swollen I can't wear a shoe. The doctors warned me this would happen, that I would hurt myself and not know it happened because the nerves are dying. I have flash moments of absolute terror. Then the world settles down. My heart tells me somehow "not today" and I calm down. Every since the doctor backed away from his prognosis that I'm dying immediately, or as he said "You have 50% lung capacity. No transplant hospital will take you until your much lower than that." I've been living that tightrope life. My time appears to be about two years give or take a missed diagnosis, I'd like to see my time add up to about another 20 years. I can't swear that the universe agrees with me though.

What Does Retirement Look Like for a Type A Persomality

2009-11-16T18:06:00.000-05:00

I feel as if I jumped on a mental merry-go-round. I can't focus on one thought. Its the hurry hurries time 1000. Its as if something broke loose inside me. I keep thinking "Is this what true madness feels like?" A relentless whirling feeling? Well like dying I refuse to accept it. This is a question of determining what's keeping me up nights. I think I'm closing in on it. I don't know who retired Susan is. What does she do? What does she wear? From the simple to complex - all that I was was about the professional world, the business world, the world of achievement. These are the things that defined me. Being a fat black woman on a little red electric scooter is definitely NOT how I envisioned myself when I got older and lets not even talk about becoming disabled. I'm so disabled I got SSDI on my first try which I'm told is practically unheard in my category. So what does disabled retired Susan look like?

A thousand years ago my first step towards professionalism was shopping at Kmart. Yes I said Kmart. I was working nights at a psych center and having some very unpleasant things thrown at me. My clothes stunk so badly I usually thew them away after a few months. But I also wanted to dress a little better than the standard uniform when I went to my college class. Blue jeans and a nice blouse was a step up. The other day I found myself back in Kmart. I needed a new watch and my days of buying at Macy's are over. It was startling to find myself back where it all began and it felt like a major failure. When you work towards going up you never imagine you could go back down too. I'm reading a series of articles about who are you in the November Oprah (I just love that magazine) and the article is timely for me because that's my big question - who is retired Susan? What resonates about these articles is how many of the women they interviewed knew what they wanted to be when they grew up. For me there was absolutely no expectation that I would be anything when I grew up. Remember this was the 60's and MLK hadn't gone to the mountaintop yet. Little black girls were rarely encouraged to envision much more than a good cleaning job. My mother would often tell me I was too ugly to expect to marry so I needed a trade to support me. Consequently each summer I spent time with various women learning everything from plain sewing, to knitting, crocheting, tatting and finally quilting. The quilting remains with me even today. Yet through all those years the one thing that never left was an intense desire to write. I'd write about anything and on anything I could get my hands on. I can still hear my mother saying "You'd better not be writing about me girl." Of course I was usually writing about her.

Writing is why I originally went to college. I published in both literary reviews and published in a literary review called "Ploughshare" at the end of my senior year at Vassar. I turned away from my writing for the same reason most people turn away from their dreams - I had a family to support. Now the family has long since grown and gone, although I'm deeply grateful for how often they stay in touch. So I guess there's no time like the present to dust off my creaky writing skills. It's a very good sign that my college writing teacher is excited about having lunch with me. Winter maybe approaching but its starting to feel a bit like spring to me.

Living In The Shadows of Fear

2009-11-06T19:50:00.000-05:00

I've been walking in the shadows of fear for three years now and its hard to believe. Ten yearsn ago I gave a speech to an audience of over 1,000 people. Afterward I was asked if I was afraid and I arrogantly replied "Yes but I did it anyway." The woman was astonished and said she couldn't imagine doing something like that. When I worked for the Governor of NYS I flew all over New York teaching about grants. I was usually alone and traveling alone when you're disabled is no picnic but I did it and then I retired and shortly thereafter became severely disabled. For me, being retired sucks. If you don't work you cease to exist, have nothing to discuss, see no one outside of your house. I lost my definition and worse I had no income. I knew that money mattered to me, was important to me but I'd forgotten how defined people are by their incomes. Without one I had no bargaining chip, nothing to negotiate with when talking to the telephone or electric company. In the space of three years I went from someone In a position of authority with a six figure income to someone begging and pleading for help, borrowing twenty dollars from a neighbor to buy groceries and I couldn't handle it.

At this moment in time I'm cracking up which is a polite way of saying I'm dancing on the head of a pin on the verge of falling off. I rarely leave the house because if I run into anyone I know they'll ask what I'm doing and I don't know what to say. "Well I'm on the verge of a nervous breakdown but thanks to the work of a wonderful therapist I haven't been hospitalized yet. Why is this so damn hard? I've never failed at anything I've tried in my adult life. I've had set backs but hell we've all had set backs. So what is this, this fearfulness of failure? My daughter said that the primary reason most people go to college is to improve their income...period. She's absolutely right. Its certainly the reason I worked a full time night shift at the local psychiatric hospital and went to Vassar College full time days and yes it was hell thank you very much, but I did it anyway. Now to be fair to myself being disabled and in poor health really really sucks. I leave the house with enough equipment to start up a small war and that's not counting my little red scooter. Between my fear of actually needing the equipment and my fear of passing out somewhere without the appropriate medical notes readily available for a stranger to read I'm carrying some serious fear AND my large purple bag full of medical equipment. You can see why I've got issues. Nonetheless I've got to find a way to break out of this. My newest idea is to plan around errands. Since I seem to live at the pharmacy I'm trying to make going there the goal of the day. I figure if I can get over my agoraphobia I can move on to larger goals like reinventing myself and figuring out who "retired Susan" is. Stay tuned. The doctor now says he was wrong about my death time table and I actually have time to figure all this out. Not as much as most people but alot more than I initially thought.

Things Aren't Going Well With My Dog

2009-10-28T23:49:00.000-04:00

I got a dog a few months ago thinking he'd make a good companion. Despite the person assuring me the dog wouldn't get very large and would have a sweet disposition he's turning out to be the exact opposite. He's pushing 20lbs. and goes from zero to 150 in the blink of an eye. Last night, because he didn't want to go into his crate for crapping on the rug he attacked me. My hands are severely bitten and he drew blood in several places. Despite all this I really love this dog. 95% of the time he's sweet and loving. Its the rest of the time that's a problem. I've gotten some great advice from face book friends but I'm afraid this is his disposition and there's not much that can be done. I'm waiting to talk to a dog trainer to see if she's got some advice for me. It would break my heart to give the dog up. By the way, he's a Lhasa Apso - a lion dog. Now I understand how such little dogs could serve as palace guards in Tibet!

The Hardest Part of Blogging Is Honesty

2009-09-19T18:33:00.000-04:00

I'm learning that one of the hardest parts of writing a blog is putting your life out there. You start off thinking you're willing to tell the whole wide world how you're feeling but then the reality hits. You start asking yourself question's like "Do I really want to talk about my sex life, my finances, my favorite foods?" Alright so maybe not favorite foods. But talking about really personal issues can give you pause, to say the least. I'm 56 but I talk like I'm 96. I constantly refer to myself as old and if I looked in the mirror (which I rarely do) I doubt I'd recognize myself. I think it's a combination of having retired and being on disability at the same time. Everything happened at once and all of it too fast. It's taken me four years to face the reality of who I am now. I think I've finally waded my way out of the Swamp of Self-Pity although I understand now how people get lost and never find their way out. The cliche "it's like swimming through mud" comes to mind alot.

In the past I arrogantly said things like "If she really wanted to change she would." I feel like i should hunt up all the people I said things like that to and apologise. I've gone through some pretty dark times in my life but these last four years have been among the worse. Still, I have been extraordinarily fortunate to have a devoted husband and good health insurance. The good health insurance brought me the medical and psychiatric help I needed to climb out of the swamp. I decided to treat retirement like a business that I really enjoy. I'm helping two non-profits I respect with grant searches and possibly grant writing. I've also signed up for something called Volunteer Match. I figure at the very least I can help non-profits find grants. I've been complaining to my husband that no one wants my 25+ years of grants experience. What I really meant was why aren't people pounding down the door or calling me on the phone begging for help. The truth is no matter what your field except for a few people our time in the spotlight is brief. That's a hard thing to accept. I keep thinking that the problem with Hillary Clinton (stay with me on this) was that she couldn't accept that her time to be top dog had passed and it was President Obama's turn. She's got an amazing job now but it's not President. I was once so popular I actually turned down requests to sit on non-profit boards. I once had breakfast (many many years ago) with the Chancellor of the State University of New York. I don't know which left me feeling more speechless - his apartment or the woman waiting on me hand and foot. I was all that and thought I always would be. Boy was I wrong. Things change and time runs out. Most important of all the old ones were right. They used to always tell us "at least you have your health." I never understood what they meant until I suddenly didn't have my health to count on.

So anyway the journey continues. The pulmonologist said that, although my lungs are down to 50% capacity that's still alot better than he expected. In fact he was down right puzzled about it. I figure with all those people saying they were going to pray for me or at least think good thoughts about me it really helped.

It's Hard to Keep A Good Blog Going

2009-08-07T17:36:00.000-04:00

I haven't written in some time because I just didn't know what to say. How often can you complain and moan about being in pain without the reader thinking "shut up already." But somewhere out there is someone else going through what I am so I decided to keep writing. What makes me angriest is when my body betrays me. When you stand up you expect your legs to support you. Falling to the floor is simply not in the script. Unfortunately someone forgot to tell the person writing my script so when got up last night to go to the bathroom i fell to the floor. Since my husband was at work I had to lay there for awhile until I could get myself up. Body betrayal. It's a new term I've coined - body betrayal. I'm back to the screaming and moaning stage of this damn illness. I increased the Fentanyl patches but I don't know where to go from here. I feel like I completely understand what happened to Michael Jackson. I'm in so much pain I don't give a damn what may happen, just give me something to make the pain stop. This time it's my hands. My hands, my hands. How do you function without being able to use your hands? Each tap of the keyboard sends a shock up my fingers that demands I stop typing, stop lifting that glass, stop moving that fork. Had to stop writing. My fingers just wouldn't' allow me to continue.
Two days later - Last night things got bad. Each time I urned over in bed I screamed, actually screamed out loud. I pulled out every pain killer I had but I get afraid I'll mix and match too many pills so I only take so much. That means making the choice of pain vs. pills. Come daylight Herman (my dog) forced me out of bed with his need to be walked. I couldn't walk him but did manage to get him in the backyard and on a leash. That's the thing about a dog. He forces me to set pain aside, set myself aside and take care of him. I would have lain in bed until Stephen came home, afraid to move for fear of setting things off in my body. Despite all this there's been good news and interesting developments. I did a local radio show and talked about grants. It made me feel as if my experience and knowledge are of value to someone out there in the listening public. Believe it or not I was partnered with several rappers and we all really enjoyed each others knowledge. That came as a really big surprise to me. I figured what do I have to say that would be remotely of interest to these youth. Instead I really enjoyed their music and offered them some helpful suggestions about places to look for funding for music. I also talked a bit about the history of rap as I know. I was amazed at what they didn't know. It never ceases to amaze me how I can find connections when I turn off the occasional self pity faucet (hey it's only occasional) and take a good look. I also gave a brief speech at a celebration for the Americans with Disabilities Act conference. Fulfilling is an overused word but I really did enjoy getting out of the house and taking part.

Fashions for Dying

2009-05-01T11:57:00.000-04:00

Every since designers discovered that fat women have money to spend I've been into fashion. I've bounced between a size 16 and size 22 and have always been able to find stylish clothes and accessories. In fact, when I was working I had a reputation for dressing well and was often asked by size 5 women where I got my clothes. That was always a treat. Since I've been home due to disability and retirement there's been no reason to dress up. No reason to put on the expensive makeup or spray the expensive perfumes. There's also been no money to maintain those things. There's been no reason to behave as if I was dressing to go to work every morning. But a funny thing happened on the way to the funeral parlor...I started caring about how I look.

Now I'm not talking about wanting to look good in case I unexpectedly drop dead because as I understand it that's won't be how I die. I mean not going to doctor's appointments looking like I really am two steps from deaths door, doing nothing more than showering and putting on clean jeans and a shirt. I have spectacular earrings and necklaces and eye shadows that match damn near any color clothing I put on. But putting on makeup or earrings or necklaces implies hope and I'm not so sure I've had much of that lately. There are definitely days I know I'm NOT DYING. I can feel it in my soul. It's just not my time. But there are other times, other days when my body hurts so much and I'm gasping for air and I'm not sure of anything other than that I hate feeling like this. I rarely leave the house and it makes no sense to go through all these "dress up" changes just for myself. My husband works the night shift and loves me like I am...dressed up or dressed down. I also don't have the money to buy the clothes and other things I used to.

Still, when I think about what is the fashion of death or perhaps the fashion of hope I have to dig some of those beautiful shirts out of the back of my closet and at least start shopping for makeup at a local discount store I recently found. Clothes and makeup have always been my armour, my protection against a world that didn't accept my skin color or size and its worked well. I'm not sure what to wear to protect myself against pain, bad health and death. Perhaps the color blue? OK I'm being facetious. I actually think I want to wear bright colors like orange, red, yellow and of course purple. I've always loved the line from the book "The Color Purple" where Shug Avery says "I think its pisses God off if you pass by the color purple and don't nod at it." And of course there's the book "When I'm An Old Woman I'll Wear Purple."

So I guess what I'm saying is its time to get back to at least caring a little about how I look to the world. It's time to find reasons to leave the house and see people again. The thing is, I talk a good game but can I actually do it?

The Wonder of Freedom

2009-04-23T10:55:00.000-04:00

I live on the corner in a small city. Bus's come and go on my corner and I watch people waiting for the buses, sometimes huddling together during bad weather. Mothers and fathers walk past my house on their way to the large daycare center at the bottom of the hill. The problem is that I don't think of this as a house in the middle of a city. My tiny and I do mean tiny house has one amazing thing about it. The front has a sun room with almost floor to ceiling windows. Not knowing any better about cost and interest rates we had the windows installed almost the second we bought the house over 20 years ago. Now I've filled the windows with plants and anything else that meets my fancy. I pretend the room and my house is in the middle of the country. This can cause some problems when I dress as if I'm completely alone in the country - like staying in my pajamas all day. I'm usually yanked back to reality when someone runs the stop sign almost directly beside my house. The street ends in a T and running the stop sign can mean smashing into whoever is driving down the straight part of the T. It also means having to put up with people spinning their wheels and gunning their engines as they climb the hill. After 20 years I've become pretty tolerant about the cars. I have not, however, given up the feeling of living in the country. I live in one of those city's called "A Tree City." This means that back when America had money there was a grant program that provided seedlings to city's so they could move from asphalt to green. Since there was no money to maintain the trees they periodically have to be cut down due to old age but by and large it makes my little city quite pretty. Its one of the many things I love about it. When my British husband visited for the first time the crab apple trees were blooming. He was quite astonished.

I pretty much stay in pajamas unless all day unless I have to go out. For instance today is one of my favorite days - no doctor appointments, thus no reason to get into real clothes. The problem is I'm beginning to understand how old women become recluses who forget to shower, dress or even leave the house. I call them "Window Widows." We've all seen them. They sit staring out their windows, never moving, leaving us wondering why they don't leave the house. I live in terror of becoming a window widow and force myself every day to do something like work on my quilting, answer my email, something that makes me move. Still I have to admit there are definitely days when, due to the various illnesses, movement goes beyond a challenge to damn near impossible. Getting back to the title of this blog - the Wonder of Freedom - I have suffered for years from what I call the "Hurry Hurry's." I suspect many people suffer from this, particularly women. "Hurry hurry and get dressed. Don't read that newspaper you don't have the time. Why aren't you downstairs working on something substantive? Now you would think that the possibility of dying would make me move faster but In fact its helping me move slower. To do the many things I still want to do I have to slow down so I get them right and in the slowing down I'm finding an amazing peacefulness. Again you'd think someone whose retired has all the time in the world but trust me when I tell you it ain't easy to go from Type A to retired. Before I got seriously ill I thought I should tear down the house and rebuild it. After all I had to time. I'm working on creating daily time things I must do and daily things I want to do. Like at 8am do all my medical stuff (test for blood sugar, test for blood pressure, take insulin, take pills, spend 2 minutes on treadmill (it might not sound like much to you but any day I can move my legs is a very big deal) put in eye drops and on and on. On the one hand all the medical stuff bugs me and on the other hand I think its really important to show the transplant people I can toe the line and do whatever they ask of me. on time. I heard about a man who had to take 60 pills a day after the transplant so his body wouldn't reject the lung. At first it sounded like alot but I took a look at MY pill box and there are already over 20 pills in there. I was amazed. Well my fingers are giving me those signals that mean get off the keyboard stupid. I'll be back later.

Coming Out Of The Death Closet

2009-04-20T13:27:00.000-04:00

I've never been know for doing anything quietly but I honestly didn't know just how taboo talking about death is in America. It's right up there with not talking about money. I'm hoping that what we're going through with the economy now will change that but, smile, I digress. When the doctor explained that, after years of pneumonia, bronchitis, pleurisy and everything in between, scar tissue had built up and was destroying my left lung. Now I knew things were bad. I'm on oxygen 24/7 and sometimes just walking up the steps or across the living room leaves me breathless. But when he said that my lungs were deteriorating and I needed to get moving on applying for a lung transplant he definitely got my attention. He also said it can take from 6 months to 2 years to get the transplant and most people in my condition die before they reach that point. Not to mention have systemic lupus will probably make the transplant committee very unhappy. Yep...I broke down. My husband broke down. Hell I expected the doctor to break down but he didn't. Now this may sound strange but my first reaction was embarrassment and shame. I didn't want to tell anyone. What if they were wrong and I not only didn't need a lung transplant but I wasn't going to die. If I'm around a year from now I'll now only look like an idiot but I'll appear to be a liar. Then I realized I've spent my entire life worrying about what people think of me. Sometimes it's stopped me and sometimes now but it's always exhausted me. So hung up on what people think of me that I won't tell them I'm dying. Now that's ridiculous.

The first thing I discovered is boundaries start falling like leaves when you think you're going to die. It';s amazing. The things I've always wanted to say but couldn't or wouldn't seem to jump right out of my mouth - good and bad. I saw an older couple having dinner when I went in to pick up take out. She was leaning against him and he was holding her hand. I walked right over to them and complimented them on what seem to clearly be a long and loving relationship. They were smiling so broadly you could have lite the room with it. The cashier in the grocery store was complaining loudly about this really terrible horrible day. So I said "I bet my day is worse than yours. I'm dying." That stopped him in his tracks. I never realized how much we control what we say, what we think. But my boundaries just keep falling and I'm actually learning to enjoy it..at least a bit.

The flip side of all this is everything from extreme pain to a loss of energy to the recognition that there are things I will never do again. Some days I'm heartbroken. Some days I mad as hell. The pain is relentless and I'm no crybaby about pain. I've been dealing with lupus and rheumatoid arthritis for over ten years. Believe me I know pain. But today, for instance, I can't draw in a deep breath. I had to mash my food up like baby food because the whole swallowing thing is tied to lung dysfunction. I was determined I was going to eat anyway. Big mistake. I've got to me more careful. My husband is sleeping (remember he works the night shift) and if I'd gotten literally choked up on the food there'd be no one to help. There are alot of things like that that I'm not ready to face yet let alone talk about. But this is me coming out of the death closet online for the first time. It's scary stuff but I figure there have got to be at least one or two folks out there going through the same thing. I know it sounds old but maybe following my journey will help with theirs.

When Doctors Give Up

2009-02-24T02:51:00.000-05:00

My husband has been working a night shift for a couple of months now. I keep waking up, almost always at 2am. I turn over, see he's not there and get up to go find him. I'm halfway out the bedroom door putting on my bathrobe when I realize he's not in the house. It never ceases to amaze me, how ingrained behavior can be and how quickly habits form. Anyway, went to see the rheumatologist today. She's been my doctor for 10 years, 10 YEARS! It's astonishing. She's still skinny as a rail and looks like she's 20 years old. She one of the few women whose beauty doesn't make me want to run screaming from the room to find a gun. She's on a constant lookout for the newest biologic which is what I think they call drugs designed for a specific illness. After 10 years of battling lupus and RA we've pretty much run through the list. Prednisone continues to be the gold standard for me in terms of controlling the joint pain enough to keep me from screaming out loud and no that's is not an exaggeration. Unfortunately the prednisone has turned me into the African-American equivalent of a fat brown hamster. Remember how Jerry Lewis looked a few years ago when he was taking pred for an illness he had? That's me - moon face and all. So to get me off the pred we're going to try Cytoxan. I hear its a mean drug (i.e. nasty side effects) but I'm willing to give it a try if it gives me even a bit of my life back. Of course finding myself throwing up in a trashcan while losing my hair constitutes truly scary side effects. The trick to new meds is learning how to tolerate them physically until you figure out if they actually work for you. I take over 20 pills a day now so what's 2 more?

I never cease to be amazed at what human beings are willing to put up with in order to stay alive. When I was 20 years old, almost not fat, strong and determined to succeed at all costs I never, in my wildest imagination saw myself wearing adult diapers at night when I went to bed. Initially I was so humiliated I wore everything just short of blue jeans to bed so my husband wouldn't see the diaper. Two horrific didn't make it to the bathroom "accidents" later the secret was out. This extraordinary man saw me wearing a Depends, gave me a wolf whistle and said "I love you in those frilly panties baby." I cried. Now you KNOW there are men that would have run screaming from the house over finding their wife or girlfriend had traded silky negligees for a Depends diaper. But my baby found a way t compliment me. He's not just a keeper, he's an Angel and I'd be lost without him. At the moment I'd also be lost without Ramen noodles and hotdogs which is what I'm fixing to eat. I threw in a couple of eggs in to hard boil. So this constitutes an officially strange middle of the night meal. Since it seems like I may have something called a hiatial hernia I know this meal is a 50/50 shot. It may go down fine and let me sleep or it may do that regurg acid throat burning thing that shoots me straight up out of bed reaching for the nearest liquid, anything anything that I can drink to calm the burning down. This hernia thing may also be why I struggle to breath when I'm lying down. It means see another doctor, more tests, a scope down my throat while I'm awake but "uncomfortable." It really sucks.

OK so about doctors giving up, I've gone from being the patient a doctor can't wait to see (making jokes, high fiving, laughing in the face of pain) to the patient doctors don't want to see (I can't fix her, she's only getting worse and her quality of life is fading) so you begin to get the vibe. You can hear it in his or her voice - that inflection that hints at anything from boredom to pity. My rheumatologist (whose called a rheumie by insiders) said that doctor's are trained practically from day one to heal heal heal. To make the patient better and if they can't they get discouraged like any one else I guess. But when you're the patient looking in to that discouraged face its a whole different thing. It will make you more discouraged than the doctor feels. Anyway, the doctor who was working with me on pain control informed me we've moved to "maintenance." I stared at him and he stared back. Maintenance is a fancy way of saying "there's nothing else I can do for you so move along." Frankly I was kind of stunned but I realize now this kind of doctor behavior is much more common than I previously knew. I felt like I was hanging out there on my own wondering if I could get more pain meds. When you need pain meds you feel like a junkie trying to convince strangers you need a refill. I have no interest in getting high. I just want a break from the pain. Speaking of which, its 4:25am and I guess its time to throw in the towel and call it a night. I can never figure out whether the act of blogging is cathartic or self destructive. Its always a little scarey to put your life out there and risk being judged.

Three Trips to the Emergency Room

2009-02-16T23:15:00.000-05:00

I'm that woman you hear about who spends so much time getting ready to go to the emergency room that I'll probably die before I get there. I have to take a shower, make sure there are no holes in my underwear, pack a large bag of everything on earth that I might possibly need (since I'll be in the ER minimum of 5 hours) make sure I've got an up-to-date list of doctor's names, phone numbers and prescriptions, a book to read, a magazine to read in case I don't like the book, my big red Franklin which holds all the information of my entire life, eye glass cleaners, notebook, pens, 1 DEPENDS diaper because you just never know, bottle of water, bottle of ice tea. You get the idea here. Going to the ER is terrifying enough so the more familiar things I can bring with me the less likely I am to jump up and begin screaming at random - something which really upsets the nurses by the way.

Why did I go? I couldn't stop screaming. I don't mean screaming inside your head. Mean flat out, my car is stuck om the railroad tracks, someone I love with all my life is dead, my best friend just said never call me again, you get the general picture here, flat out screaming at the top of my lungs. Every time i moved my left side even just a little the pain caused me to involuntarily scream. Now I knew the COPD thing was getting worse and worse because I was making noises like a cheap accordion. A friend also said this sound is like the wind blowing through a cheap pane of glass. Either way it signals I'm in deep doodoo on the health front. This was something new and you don't want new when you're in my condition. My daughter, who called about something else, heard gasping and demanded I go to the ER. The problem with growing older is how much your children feel it gives them permission to talk to you like you are now the child. I'm wrestling with this one but generally allow it because I know deep down it means they love and worry about me. My husband and I went to the ER at the best possible time - 5:30AM on a Monday morning. You learn these things unless you're looking to spend a minimum of 12 hours in the ER fighting with strangers over what will be watched on the one TV in the waiting room. My suggestion to make your ER visit go better. Be as polite and friendly as possible given that you're most likely in excruciating pain. However, suggestion to help you maintain your pride - require everyone to tell you who they are. I reach out my hand to have it shaken and say "And you are?" if they don't introduce themself Stops them cold every time. I suspect the ER folks meet so many people they literally forget who they are so they don't introduce themselves.

There is only one statement guaranteed to make me jump off the gurney and try to commit murder. My husband always stops me so I have yet to succeed. Someone while needing to put in an IV, do a spinal tap or worse yet draw an arterial blood gas ABG (a blood draw from the tiny artery in my hand). An ABG is so painful that I have no problem with screaming out loud at the top of my lungs while weeping. When completed, occasionally some idiot says "Oh come on. It wasn't that bad was it?" If by chance there's someone from the medical profession reading this take this message back to your colleagues. Do not insult a patient by telling them they have no right to their pain. It hurts as much as it hurts and unless you live in their skin you have no idea of how bad a procedure can be. Whew...I feel so much better now.

Anyway, after 5 hours, a big dose of sodium medrol and a 1 hour nebulizer treatment I wasn't breathing any better and they wanted to admit me. I begged to be allowed to go home and take it easy. OK I admit the taking it easy part is really hard for me but I'm trying. The thing about hospitals is that, when I was much younger I thought of it as a great place to get attention. At almost 56 I'm afraid they won't let me leave. So I hate going there. It's not very mature and drives my daughter nuts but I'm just flat out terrified to go the ER. I'm open to any ideas that can change my thinking. This is getting to be the equivalent of a fear of airplanes. I've had a stroke so again I'm aware of the importance of time when it comes to dealing with illness by going to the ER. I'm trying to act like a grownup but some days I frankly lose the fight.

A digression: I was watching the evening news and they showed an invention of a very small camper type thing wrapped around a shopping cart. The idea is to provide the homeless with a place they can sleep up off the ground. When they interviewed one guy who uses it he said, and I'm not making this up, "I'm on my way to the American dream now. I've got my first home." I watched his face closely to see if he was being facetious but he clearly wasn't. In this time when we seem to talk of nothing but the thousands going through foreclosure this man gave me pause as well as humbled me. He was so delighted to have his shopping cart home. A little home made out of a shopping cart and it brought him such joy! Think about it.

I'm tired from my digression. Dying is exhausting.

Up At 2AM Again

2009-02-02T04:11:00.000-05:00

I'm up watching the Grey's Anatomy I DVR'd. When you're seriously ill watching shows like Grey's Anatomy convinces you that your own illnesses aren't as real or scary. I'm also eating my second bowl of Lucky Charms - mainly because I ran out of Honey Nut Cheerios. I figure these things, short of my breaking down and making mac and cheese from scratch, are the closest I can get to serious comfort foods at this time of day. The pain is back like a runaway freight train. This time its in my left hip-the usual bone or joint pain. I've hauled out every legal painkiller I've got and that's saying something cause I've got alot. From oxycodone to neurontin to methadone to fentanyl . at one tine i figured out had the equivalent of $8,000 worth of pain killers. i knew where to go to sell them but with my luck i knew I'd get busted. Heavy duty painkillers for heavy duty pain. I've got so many diseases its a virtual card game to figure out which one is plaguing me at any given time. This makes it easy for the bad doctors to write me off and the good doctors to feel really bad about me.

Now don't get me wrong. I'm NOT into the self pity thing. Before I became a card carrying member of the disabled, chronically ill squad disabled people used to really annoy me. They were whiny and believed they had some God given right to be compensated for what they'd suffered. It was almost as bad as the expectations of black people and since I'm black you can imagine how well that went over during black history month discussions. Well that karma thing will get you every time. It sure got me. Over the course of 10 years I've gone from using a cane to a manual wheelchair, to a rolling walker to an electric scooter and a few things in- between In my lifetime I have gone from being a teenage welfare mother to being appointed Assistant Welfare Commissioner for my State. It's all been one hell of a journey.