Jumping through hoops

Things that I have to do in my life most other “normal” people take for granted. I have become extremely efficient when it comes to my health. Almost to the point of being a control freak!

It’s not just living with the pain and the symptoms that’s hard, it’s the constant checking and making sure, living my life by the clock, the beeping of my alarm to tell me to take more pills wherever and whenever.

One of the most infuriating things is having to fight, and fight some more, for everything.
The doctors call you an “informed patient”, but you have to be. Because, if you weren’t, things can get very hairy indeed and could potentially risk my life.

Appointments- I seem to spend most of my time phoning for appointments, racking up huge telephone bills to hospitals and doctors’ surgeries, following things up, sorting out problems, letters, referrals, faxes, emails, prescriptions, and all the time being passed from pillar to post in an effort to correct issues and mistakes. I should be a medical receptionist with the amount of documentation I have to process!

I wish the whole process of getting my medication and my prescriptions was so much easier, and not met with difficulty.
First of all actually making sure my prescription is in fact correct can take a few tries. Then finding a pharmacy that can get my meds (the blank look from the pharmacy assistant who says, “oh we can’t get that in today”, er yes I know!! “Call me in a week or so”, I say!)

After a few phone calls from them telling me they can’t get MagTab SR tablets in and they will have to import it, they tell me this may take a couple of weeks… “Fine”, I say, “good job I’m not on the last of my pills”, and give them information of websites and telephone numbers of pharmaceuticals companies for them to try.

It’s always good to have a few tablets left and not to leave it till the last minute to order the repeat prescriptions. Again, going back to me being the control freak and an informed patient.

I have three (count them!) lockable medicine cabinets to store all my pills, each numbered with the newest to the oldest stock (yes I stock take!). On the side of the cabinets I have a list of all the
meds I take, what time, and amount I take in mg. This is duplicated in triplicate so I can provide this info to doctors at a moment’s notice. I also have numerous copies of my patient protocol document (one at home, a few copies in my handbag, one in the car, not forgetting my Medical ID bracelet) stating, personal to me, what should be done in an emergency if I was sent to hospital and admitted. It states how much meds and when and what rate IV is needed and which blood tests are to be done asap and that ECG should be done as a matter of urgency. This obviously depends on which junior Doctor is working on A/E, as to whether they pay attention to it!

I also have to make sure all my medical information is up to date and correct. I have educated myself, and read so many articles and research, so I can best help myself learn about my condition. Mostly I try to make sure my diet is high in potassium, magnesium, and sodium; that I am hydrated in warm weather or during exercise, and taking a few extra
pills of potassium to accommodate it.

So yes, jumping though hoops and the relationship between medical professionals and pharmacists needs to be a good one. It is something we have to do in order to survive, and I wish the process between them would be a smoother one in regards to communications.

Posted 31st May 2015