As I watch my finances reach freak out level and I continue to shift things around to make things work I am discovering how much I took for granted. I just eliminated $11/month with subscriptions I basically had been too lazy to delete. I took the time to ask and found out I don't need a phone line to have DSL, saving me about $60/month (I may have to add some cell minutes so maybe only $40 but we'll see). I can't do much about utilities until I have gotten rid of a few financial things that prevent me from qualifying for aid programs. I think I will qualify in a month or two. But already I've cut about $100 and really won't suffer for any of it. There are plenty of things that are going to be very hard and in a way the things I have no way to cut back and save money are the hardest to cope with. Dr. Mind is going to see me at a very reduced rate. This is very hard because I don't know what to tell them I can manage and I feel really bad accepting this but was told that I am well known there (it's true, therapists use my name and I don't know them; comes from being the longest term client and there for all but 2 years the place has existed) and that this is how they can help and I need to let them worry about that part. Except then they asked what I can afford and I do not know what to say. Not only do I really have no idea the amounts I'm sure of are so tiny to be pointless. He brought up the other day that cutting back would save me money. I am not remotely comfortable doing that and yet I am worried that suggestion came to help them not lose so much money while being kind to me. The last I knew from Dr. Brain she wanted the twice weekly sessions to be very long term. And practically they are important; I pretty much need someone to be asking me if I am in danger because I don't know I could volunteer that yet. And the only way to get into my large quantities of meds is to have Dr. Mind give me my key. That means if I make a mistake grabbing pills it's important to get in there soon, and it is also important to be able to put away new bottles of pills. So giving up that support would be pretty bad. Yet the twice a week thing is unusual, at least where I go. Everyone seems ok with it because it works for me and time has shown this, but when they are getting into essentially donated time it's harder.
Some of the harder things are still coming, like telling the hospital I can't pay them $1500, or going to find out about food stamps, etc. I am happy to have the programs available and know that this is what they are in place for, but it's strange to be filling out so many forms and trying to explain my income last year has no bearing on now. I discovered while looking at some social security stuff that one way it's easy to tell how sick I've been is that I never made the kind of money I should have. The early years when I didn't have trouble working (at least less of it) I was a new grad with a lower income. Then the rest of it is broken by periods of disability, unpaid leaves twice each for a few weeks, and short periods of unemployment. Plus there were a few years I didn't work full-time.
On the other hand years of meticulous paperwork that is both dictated by and scrutinized by the government have given me a hand with this application process. About a year and a half ago someone from corporate reviewed my documentation saying that the only problem was that I was TOO specific and therefore wrote extra. That is serving me well now.
I don't know how to describe how I"m feeling right now. There is a way that I feel a little better. I think deciding with my mom and for now we're working on my staying in my house until I'm ready to change that helped. I don't love it here and if I were in a position to just decide to move I would, but I do not want to move when I would have to buy a house that would not be likely to be as nice as this. This place has problems but I have spent vast amounts of money on roofing, windows, and doors and it is snug. I could never afford to repeat that and the difference those 3 things made in my home is so great I do not want to leave and not be able to fix it. There are other things but mostly I had decided to move in a sequence. This would not be following that and the one thing I promised myself was that I would buy a home that did not need top to bottom remodeling as this one has. I can't afford that and my decision making is different now.
While I am getting used to all of this I also feel like such a failure. I know that I tried as hard as I could and that I did more than would easily be expected of me. I know that 11 years (almost) is a pretty amazing run when I really couldn't hold a job or work very long without time off for illness. I know that I worked on medications that make work extremely hard. But I always thought if this happened I'd have more warning. And while I suppose I could have seen back in the fall that I wasn't bouncing back I kept thinking that until Brenda the ovary issue got so bad that I couldn't stand it I had been doing fine and would resume that.
I have always tended to have a pretty good memory about patients. It is because I was often supervising patients in 5 or 6 places when I was a new grad and nearly always at least 2 after that. So I easily could have assistants asking me about 40 or more patients. It was easier to memorize them. But one thing that I've noticed is that my mind may have been preparing for this ending more than I knew. The last weeks that I worked are so clear in my mind and I remember the last patients (the last month or two of them) in great detail. While other patients from home health certainly stand out none stand out like the last group. It's almost like I knew those were my final patients. I just wish I'd been able to say good-bye. One person in particular I'd worked with for months, had gone to her house worried that I couldn't reach her and discovered her having a stroke, and she was to be done at my next visit, which never happened. Another person I had just immediately clicked with. He will be the last treatment I ever did. I was so anxious to see him through his upcoming transplant though and I know he had it but nothing else. The last day I worked I saw him, had the next person stand me up, evaluated someone I had previously treated and knew wouldn't need treatment, evaluated another person who didn't need or want more than one therapy and started to see a final person who couldn't be seen because hospice had started with them the night before. It's weird to look back and think that was the final day because it was atypical and nothing about it gave any indication that I wouldn't soon be doing the same thing.
Anyway I should go. I think I have an appointment with Dr. Mind tomorrow but it's not on my appointment card. I am nearly positive they said Monday though. So I have a call in and if I don't have an appointment I'm hoping they can get me in. Which means I should try to sleep.
One thing I miss desperately is taking meds and getting sleepy. I hope that this will change soon.