From the Lab Rat’s Desk 02-12-2005

Illustrated version at:
http://tillthereaper.blogspot.com/2005/12/c-c-c-cold.html

It is snowing outside and I am not the slightest bit happy about it. Had it been Christmas maybe I could feel generous and be happy for the children, but not now. It is cold, despite my putting a layer of clear vinyl over the patio doors, using bubblewrap for a cat flap so they can use the box outside (will not have that in the house.) This morning on waking I could see my breath. I ran the shower for some time steaming up the windows, and myself. I’ve run light bulbs that are normally off. I doubt candles help much but they look warm and give off illusory warmth which is better by far than none at all.

I’ve had to keep my hands from forming into claws by keeping them moving, the cold makes them cramp. The positive upshot is that the new grandchild’s baby blanket is nearly complete.

I dare not go outside, I can trip on flat carpet, slippery snow and ice, not a good idea. The dog was lovely this morning, not pulling at all, as though he knows. I’m having a lot of use of the lambs-wool sweater from Australia, my dear Lois, you are an angel.

Some moments I am greatly spurred by a desire to build a fire. I was told by a friend who,was a firefighter that so many of the fires in winter were because people were desperate to stay warm. I know it gets much worse. Here in my apartment it is now about 60 degree Fahrenheit. Imagine being homeless or having no gas or oil. The comparison makes me feel almost guilty for having even this level of comfort.

I did some laundry, wish I had a washer and dryer, I remember how nice it felt to pull on clothes just pulled from the drum of a hot dryer. Instead the clothes are hung about the apartment like a scene in n old honeymooners episode. This is not how I pictured my life in my fifties. That goodness I grew up not feeling entitled to all the perks of the first world or I would feel even more envy than I do now, envy for thermostats and laundry facilities. Still better than two years ago when I had no electric blanket, no heating pad, no toaster oven and could only afford one meal a day much of the time. So life is not that bad.

I think I am rambling a bit, but the agility of the mind seems is also not as agile as when I was very warm. How many days till spring?

From the Lab Rat’s Desk September 25, 2007

So sick of being sick and tired. so sick of having being ill creep into all aspects of my days and dictating to me what I can and cannot do or expect. so sick of complaining, but even more distraught that there is so much to have to complain about. This week’s top bug up my *&$#, doctors who cannot get a prescription right and then aren’t available to correct their error for the pharmacy. As it is it is a damn pain to go to one doctor for my primary care but have to go elsewhere to get my pain medication. Once a month I am reduced to grovelling for pain medication from a doctor who barely knows me, and never for anything more than pain medication. I go to a clinic, where after a long search they grudgingly accepted writing the prescriptions for me as my own doctor no longer prescribes narcotics to his patients (probably makes his insurance rates far lower). The amounts prescribed are at the suggestion of the local pain clinic (“the” authority).

Normally the doctor I see has hours at the clinic on Thursday afternoons. So last Thursday with my pills having about run out I came to the clinic as so many months before to find out my doctor has changed those hours. Another doctor agreed to see me this time. Fine I left there with the triplicate script and headed straight to the pharmacy. It would take about 40 minutes to fill so meanwhile I tried to keep busy browsing and returned about a half hour later.

I was feeling pretty good to about how smoothly it had all gone despite having to see another doctor. Hah, they had me there. The pharmacist explained the prescription could not be filled as it was made out to 5 times a day where it should have been 3 times a day. How many years of medical school does it take to make out a prescription when all you do is copy the previous amounts clearly filled in on my medical file. He also asked how many times a day and I showed him the vial the previous prescription was in. How on earth could that have been so badly wrong? I was given a one day supply of my pain medication and told they’d phone the doctor and straighten it out. However when I returned the next day nothing had been straightened out and I was issued another couple of days medication to hold me over. Finally today (Tuesday) the medications had been straightened out and dispensed at the previous amounts. All this amounts to three extra trips for me to the pharmacy, the waiting, the added stresses and the exhaustion which leaves me so drained I can do nothing else for the day.

It should not be this hard. If a prescription does not change it should just easily be re-dispensed by the pharmacy on a doctor’s okay, shouldn’t it. I often wonder (out loud even) what happens when I am completely unable to make these trips to clinics and pharmacies, then what? I haven’t yet had an answer to these questions. I am not getting any better, and essentially if it were not for medications I wouldn’t be functioning at all. I take them grudgingly, I’d rather take none at all as I did for most of my life, but I have a strong desire to keep on living and being as functional as possible. Why make it so damn hard?

So that is my number one bug of the last week. Finally I can put that one to rest for another three weeks when the whole nightmare will repeat. I still haven’t had any of the autonomic tests ordered for me two years ago, the MRI ordered because I have no feeling in my feet has yet to be booked, I am on a list waiting, as always. I know there is a protocol somewhere which decides which tests can be ordered and which groups get preferential booking depending on age, disease and prognosis. No doubt it matters to slant it in such a way the statistics look more positive so everyone gets their funding at maximum levels. Older women with strange relatively unknown diseases for which there is no cure or treatment probably don’t get moved up too much compared to young, working and curable. I understand it, I just don’t like it. I’d like to see it though, just to know what I’m dealing with and what I am entitled to and not.

On the bright side I had a lovely time at my granddaughter’s 4th birthday (photos at www.flickr.com/photos/aletteke). At least the pharmacy had the decency to keep me free from pain in spite of doctor’s mistakes.

I still can’t feel my feet, I just accept these things as they are and go on, doubtful I will get and MRI, and doubtful if I should it will show anything. I was prescribed Quinine for the cramping in my calves and feet but found it was not covered by PharmaCare and I haven’t been able to budget for it. I wish doctors would bear in mind what we can and cannot afford when prescribing, sparing us any embarrassment caused by having to return it to the shelves because you cannot afford it. It is also a let down when you had hoped for some relief. Oh well, accept and move on. I am often angry at myself for not being up to the fight to get what I need, a better place to live, better medical care, but I am not alone, a lot of us have to make do. The greatest stress in my life is the worry that even this little which I have will be taken away because I have no power to fight for myself, I am at the mercy of the “givers”, the creators of the hoops to jump through to get one’s barest needs met. At best a humbling experience at worst utterly terrifying and infuriating.

It is getting cold here, I am once again writing wearing gloves and sitting under a few layers of blankets. thank goodness for warm clothes and thermos jugs of hot coffee and tea. Almost time to construct cold and wind barriers from plastic and duct tape, trying to greenhouse in some of the balcony thinking it might provide some extra heat on sunnier days. How I miss the old days when I had a fireplace and thermostat, and my own washer and dryer. Now to brace for the winter.