Up Again at 2am

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

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

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

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

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

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

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.