Can I be a person not a patient?

I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.

My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.

I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.

Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.

My time span

These days, every day I have an expiration time. This means at no point past that point in time should I attempt to do anything more than knit, read, or watch TV. This time frame means that every day I need to plan out  my day and not spend more time than I should at any point. Every week I sit down and plan out my little time periods so I can get through my days and what I need to get done..

Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.

Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.

Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.

Since my diagnosis  just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.

Appointments can mess up everything!

We are going on vacation in a few weeks and looking forward to it. This is an annual trip that has been planned. (And no I am not giving special insight to burglars as we will have a house/cat sitter while we are gone.) As part of our getting organized for this trip, I have longstanding plans to have tea with the house/cat sitter to discuss details of what is the latest food the cat will eat as well as other general information.

We are supposed to have tea (or possibly champagne and paté) at 3pm.

Yesterday I gave up on my back issues and decided living on Tramadol is not the lifestyle I enjoy, and called my back pain doctor for an appointment. The only available appointment in the next month is at 245 on the same day. Wah!!!

So now I need to reschedule our tea/champagne and paté to later in the afternoon. Obviously I can't drink champagne and then go see the doctor.... I know I could have said no but it would mean more time living on tramadol.

This always happens. We are at the mercy of our doctor's and their schedules. I also know that we are also stuck with scheduling around our other appointments. But damn! I hate it when doctor appointments conflict with the fun parts of my life.

My goal this week is to go to work

In the past two weeks I have worked 12.5 hours. I usually work 15-18 hours/week so you can say I am a tad bit 'behind'. My job isn't the kind where I have these huge looming deadlines but one where I have a consistent pile of projects that I keep digging away to keep under control. So now all my projects are behind.

When I went out the door on Friday (and I NEVER work on Fridays - this gives you an idea of how far behind I am), I said to my boss, instead of telling him when I would be in next, that my goal was to go to work this week. He laughed. But it is very true.

I am going to work today on a Monday. I almost never work Mondays. My preferred work week is Tuesday, Wednesday and Thursday, from 8-2. A nice 18 hour work week. It gives me a four day weekend.

This weekend was a two day weekend. I hate two day weekends. I don't get enough rest. So today I am going to work for about four hours and then to the gym. I will be home around 2 I hope. Its supposed to be a beautiful spring day and I want to get out and enjoy it.

But I have to go to work this week.

I do have a secondary goal. I do not want to go to a medical facility this week. I have been driving both my parents to their appointments - my sister has been helping too. I have been at a medical facility approximately 3-4 times each week for the past month or so. This is between driving them and visiting my father. This has contributed to work rescheduling and working on Mondays and Fridays as well.

I need a break  from medical facilities.My brother is visiting this week. His role is that of chauffeur and deliverer to all medical appointments. My sister needs to get some work done on her car and this is her chance as well. Next week we will return to driving them after our break. I might even be caught up at work by then.

How long?

When I was diagnosed with breast cancer, someone told me it is a year out of your life and then you get back to some sort of normal.

Another blogger this morning announced that after two years of blogging about her Hodgkins Disease she is moving on to blog about social media and other things. Her cancer adventure has slid into the background of her life - right on schedule as she had been told when she was diagnosed.

The wise people who tell us the deadlines on our diseases are not doctors or medical specialists but usually other patients reflecting on their experience and what they have been told by other patients.

So how do you put a schedule on a cancer diagnosis? My life, six years out from diagnosis two, is a never ending stream of doctor appointments. Well yes I did develop additional, non cancer ailments - bad back, rheumatoid, fibromyalgia, but at every doctor appointment there is still a little cancer hanging in the room. Maybe if I could go back to annual physicals I would be more relaxed about it.

I just don't think I can ever put a date on the end of cancer stress. The little cancer roller coaster rides through my life like the little train that could. I don't see an end of the line for it.

Maybe I am a bit pessimistic these days but I am tired. I just woke up and still need a nap. The nap is the fibro/RA speaking to me. I do need to go to the grocery store and want to go for a walk in this nice weather.

But I would like to kick that little cancer train out of my life....

Over committed again

I am over committed again these days. Combined with a lot of back pain, it is not a lot of fun. We spent the weekend away (without a cell phone and survived) but that cut in to my work time.

I am working my one job, winding down my other job but do not have enough time to get everything finished and I have deadlines. I am also starting to do a little more volunteer work, and tomorrow is an annual event where I have to be there at 6 am - but  its only ten minutes from home. I usually stay the whole day but this year they are going to be lucky to have me until lunch. Between back pain and other things I need to do, I am a little short on time and abilities.

Yesterday afternoon I spent was in a good deal of pain even though I took my pills. Silly me, I thought I could go for a walk after working for six hours.

Let's see how I do today. I bet I'll be on my way home by noon.

Day by day

These days I live things day by day. What I mean by this is I plan to have a normal schedule and be the normal me (as much as I can be considered to be normal) and then I start making alterations to my schedule based on how I feel. Some days I keep my schedule and some days, I make short cuts, go  home early and take naps.

Yesterday I was supposed to go out to dinner with family but I opted to stay home.  I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.

This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?

I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.

Now I know, nap first, motivate later.

Cutting back

In the past several months, I find I run out of steam between my two jobs, home life, social life, etc. I decided I needed to cut back on life - to allow more down time, naps, and sleeping in general.

Five years ago, I was happy to expand my life to add more work and do more things. That was great. I was through cancer treatment and feeling good and we even took a vacation to Acadia National Park for hiking and biking.

Then I had my gall bladder out and my back pains started. Now my gall bladder is healed and my back pains have a treatment plan so they are usually under control. unless I do things like stand, walk, sit, or lie down for any length of time. My life slowed down some. I stopped some of my more aggressive activities -  no more skiing down the fall line or bike riding for me.

I juggled and coped. I worked two part time jobs. I went to northern Wisconsin and rode a scooter on an island in Lake Michigan and enjoyed other vacations. I did volunteer work. I worked about 35 hours/week between the two jobs. I would usually work part of each weekend day

In the last several months, this has all become a problem. Between the RA and fibromyalgia, I need more time to rest between work and other obligations.

At my first part time job where I go to an office 15 hours/week. I have changed my schedule to be 3 six hour days one week, followed by 2 six hour days the next. This will mean meet my obligations but I get to have short work days where I can come home and rest as needed.

By the end of February my second part time job will be down to 10 hours. During March, I will take care of some specific obligations that were previously scheduled. Then as of April 1, I will not do any nights, weekends, or non-local events.

I can't. I tried. I go to a meeting at night and then need to sleep in the next day to recover. I need time off on weekends to recover from the week. I have six weeks left to get through before I can start my resting time. I will have a count down to see if I can make it.

What to do with all my time?

I have finally reached a point in my 'new normal' life after cancer number two where I seem to have gaps in my schedule. I was trying to pin point what happened and I decided it must be because I have been going to the doctor less and currently have no ailment which requires PT. In January, I had one appointment at the beginning of the month and then another at the very end of the month. In February I had a couple of medical adventures and then a week with three or four. Through some schedule juggling, I had two appointments last week and don't have another until the end of the month. I think I have two on my calendar for April. In May I have two days with medical adventures planned.

Combine this with a slackening in my work schedule for one job where now I only need to go there two days a week instead of the three I had been going in for the last six months, I have gaps in my schedule. What about the rest of my time? Maybe I need to start having a life again. I could work more, um, doubtful. House cleaning - um, no. I could work on my knitting more. I could garden and go for walks more when the weather warms up. Yesterday I worked from home, went for a walk with a friend (where we ran into two adult coyotes in a local park), and had time to attempt to make homemade pasta. (Note to self: next time make sure you have enough flour before starting so you don't have to substitute coarse ground whole wheat.)

Today I get to go to the gym, work from home, and go to a seminar this afternoon. Then I might even be able to work in the garden and clean dead winter stuff out for a bit.

I haven't had this much time on my hands in years. Before cancer number two, I was working full time and didn't have as much time. Now I work 30 hours/week and, with fewer doctor appointments, I have time to do the things I enjoy with out running from one thing to the next.

(And the advice I received on what to do when you see a coyote - stop, look at the camera, say 'beep, beep!' and dash off.)

I dreamed about the garbage disposal

A little background here so you don't think I am too weird. I had sedation last week and I always get weird dreams from the drugs for a few days. Whenever we have issues with the garbage disposal, I am the one to reach in and 'rescue' things. Most recently this included the little top for the pressure cooker (and am now in search of a replacement one). But I digress, the other night I had a dream about the garbage disposal that for some reason something got stuck in it and when I reached in it was full of broken glass all over the bottom - like light bulb glass. Then in my dream I decided it might be better to grind it up and send it on its merry way down the drain.

In the morning, I thought 'what a weird dream'. So if anyone wants to analyze that, feel free and tell me what you think. But if it says anything about cancer, forget it, don't bother.

Yesterday I went to work and then for a walk. There is a nice big lake conveniently on the way home which is about 3 miles around. I decided to take advantage of the nice weather and get my daily walk in there. It was quite nice - a little crowded but nice.

Today I am behind schedule. Usually between the combination of my husband getting up and the cat wanting breakfast there is no hope I get to sleep past 6. Usually the cat comes back up and sits on me until I get up - a 15 lb cat on your stomach is not conducive to sleep. Well both failed in their jobs this morning, and I didn't wake up until 7. That doesn't sound very late but I have work to do and then have to get out of here around 9 for an appointment. Later I am meeting a friend for a walk and then need to fit in a good chunk of work this afternoon. My life is not too exciting.

Aggravation and the return of brain cells and other things

Yesterday, call me slow, I received an appointment list in the mail from the hospital giving a list of my upcoming (and last week's) appointments. I thought about it and realized that my physical with my primary care physician had disappeared from the list. I checked and realized it disappeared from the appointment sheet probably in December - and I never noticed until now. So maybe I am slow.

Anyway, I called and was told yes your appointment was canceled due to a scheduling change by the doctor. I can understand this. These things happen. What I don't get is the following:

- They never rescheduled the appointment. They told me they only deal with cancellations about a month or two before they were supposed to occur.
- The doctor is booked until August and they can't schedule August appointments until Monday because that is February and they book six months out.
- So, if they didn't deal with my cancellation until March - the month before - would they be rescheduling me for September?

I tried to communicate this to the woman on the phone and she said 'dont shoot me, I'm only the messenger. They (the doctors) change their schedules and we (the phone people) take the heat for this.' Well that helped a lot. Of course you take the heat if you don't reschedule people for cancellations when they happen. Anyway, I got a few hours of sleep on Thursday night so I was nice and aggravated and very 'pleasant' on the phone. Monday I will call back and sort it out.

In the meantime, last August I reported losing all kinds of things and they have been reappearing. The missing down comforter was at the cleaners under someone else's name, the missing hydration pack was in the basement, and my missing yak traks were hidden in the closet and I found them yesterday. This is very important as locally, we are living on a glacier with glare ice everywhere. If only I could find my brain cells. Then I would be happy.

Today I am off to be educated on how to be a good volunteer for the American Cancer Society in a three hour training session this morning. Actually I think it will be interesting. But I could have slept late today. Perhaps crabbiness will reappear. These days my husband is quick to point out the return of the crabbiness. My back only hurt a little last night so I did sleep a fair amount which helps this situation.

A friend is also coming over for a walk on the bike path which was plowed after the last storm. But then it rained and froze and the portions of it in the shade are skating rinks. Yesterday I tried walking and nothing like water on top of ice to make things interesting. This made me determined to find the yak traks. Brain cells, where are you?

I Think Technology is Winning

A few weeks ago a friend sent a bunch of us an email. I got my other friends' reply to it before I received the original one. Last week, another friend sent an email, which I never received. Then just the other day, another friend sent me an email that showed up a couple of hours later. Even though other emails she sent me arrived in a timely manner. What does this tell me? Either there is a giant conspiracy against me and I need to develop a massive insecurity complex so I can deal with it? Or technology simply surpasses my understanding? Or there are some really slow servers out there? Or that the email is no greater a means of communication than a phone message or a fax - where you never really are sure they get there but assume they make it?

Personally, I think I shall develop the insecurity complex for now. Its better than thinking about health issues and back pain which kept me up most of last night. The back pain kept me up, not thinking about health issues. Eventually I gave up and took a pill. I am trying not to take the pills every day. However in the interest of crabbiness prevention and marriage preservation, I do take them when I can't sleep.

However the question of the day? Does this little Lego man in any way resemble the former governor of IL? Please note the hair style similarity. I read this somewhere online in the media coverage of the impeachment circus that the hairstyles are very similar. I do have to agree.

Anyway, in addition to developing an insecurity complex, I have been busy because I overscheduled myself. Yesterday I met a friend for coffee, met another friend for a walk, and went to work. Today I am doing work from home, getting a manicure, meeting another friend for coffee, going for a walk, doing more work from home, and then going to work. (I need a vacation!) This is getting stressful. In case you were concerned, this is what I get for coffee where ever I go: a medium or large decaf with skim milk. I don't use the fancy names, even at the trendy coffee chains, I just order a decaf in medium or large. I do admit to adding nutmeg and cinnamon to my coffee once in a while but have successfully ended my previous addiction to lattes.

Yesterday I finally set up my physical therapy. I will begin a week from Monday, the day after we return from our snow shoeing adventure in the Adirondacks. I am sure I will have lots of aches and pains (and general whininess) t share with the physical therapist. In the meantime, I will just be patient for another week before it starts. Actually I was thinking about it. I called the doctor on December 22 while I was away. They fit me in on the 30th. I couldn't get in sooner because we were away. I saw the specialist on the 20th. They offered to have me come in and see the nurse practitioner earlier but I opted to wait to see the doctor. Then I had an MRI on the 26th and a follow up on the 27th and physical therapy begins Feb 9th. That's not that bad a time frame because I opted for the delays. However, I am still working on being a patient patient. Someday perhaps I will perfect this but in the meantime I can be crabby and whiny.