Hobbling around made me forget

Sunday was a bad day for me - I helped at an event on Saturday night and was out for about three hours but evidently I stood up too much. Sunday I was in so much pain I would have preferred to spend the day taking it easy but I sucked it up, took a tramadol and met some friends for lunch. Monday wasn't much better. I made  it out for a walk with a friend.

Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.

Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.

Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are  not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.

Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.

So what do your doctors write about you?

Don't you ever wonder? You see your doctor, you ask your questions, get your answers, maybe some new recommendations and follow ups, and are on your merry way home. At some point after they see  you, your doctor writes down notes about your appointment. Do you ever wonder what they say about you?

I have had some infrequent opportunities to see my medical records. Partly by happenstance and partly by choice. Some of it is crystal clear and makes sense and some of it requires a decoder ring - that my surgeon provided at the time. I found it interesting.

There was a recent voluntary study (because we need more studies) where doctors shared their notes regularly with their patients who wanted them. They found better compliance with doctor orders among other things.

I know I can go to the hospital where I am treated and get a specific test result for no charge but if I want my full records it will basically cost me $100 for the first 100 pages and then $0.36/page after that. With my  medical file, I'm probably looking at around $1000 for the whole thing. That's just fine. They can stay there.

But I do have a friend who found out what her doctor wrote about her in her medical record - it was something along the lines of 'she will never lose weight because on weekends she drinks a lot and pigs out'. Seriously that's what the doctor wrote. That is now her former doctor. And she got a patient advocate to help in getting that removed from her permanent medical record.

I am sure my doctors write things like "paranoid, chronic complainer, pushy, bitchy, hypochondriac, full of mysterious ailments who uses more than her share of the medical system" in my medical file. Actually I don't think they write that.  I am sure its a very fat file hogging lots of disk space. But most of its probably in doctor speak and I didn't get the decoder ring.

Would a written note at the end of each appointment help my chemobrain/fibro fog memory remember what I am supposed to do and why help me? Probably but I don't need more paper in my life. And I don't want to have to wait until they doctor gets around to writing the notes either.

My incompetence has reached new levels

I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.

I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.

I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.

This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.

Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.

Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take  tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.

So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.