Herman and I Are Down for the Count

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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?