Learning From a Clinical Trial

At one point in my care my doctor suggested that I participate in a clinical trial for a possible new drug for rheumatoid arthritis.  It was a double blind trial which meant that neither I nor my doctor and the trial staff knew who was receiving the real drug and who was receiving the placebo.

                                        designyoutrust.com

The whole trial protocol  was very new and exciting to me, from the very detailed informed consent, to the questions that had to be answered in great detail, and the necessary lab tests before starting the new drug. The appointments that were necessary were laid out in detail so that I was able to fit them into my schedule.

All of this extra care and attention made a real difference to me.  I learned a lot from the trial including the exact status of my health at the time.  One of the most valuable things I found out was that I did not have to go to the GP doctor every week to have my methotrexate injection.  No one had ever told me I could do it myself!!

The staff was encouraging and helpful.  I was able to ask about every health issue. Getting that kind of attention is a rare luxury in today's health system and I am sure that alone improved my health.

I also found that I had an inflated view of my skills as a patient.  In my mind, I was the most careful patient ever. The one who could truly be counted on to take my pills exactly as prescribed.  It seems my opinion in this area was not totally accurate.  

Since the pills had to be kept in the refrigerator and taken with each meal I had to make sure to have a supply at work so I would not miss taking any doses, but I could not keep too many there because of the necessity to count and balance the pills I had left.

                                            collecttoys.net
In fact I am sure that at one point I made a mistake, forgot I had taken one and took another.  That's when I began to think that I might in fact be taking the real drug because I developed a slight rash and some itchiness.  (In fact I was taking the real drug but only found out much later)

The study was suddenly discontinued. The final letter said that there were some bad effects in the animal studies and I had to return all of the pills I still had - that's when I found that the count was off.

The trial was a rare opportunity.  I didn't get any worse or better but due to the encouragement I started to exercise more and to eat better.  It shook me out of the attitude that I couldn't do much and made me feel more capable and better off.  I would gladly do it again.

                                     rare quail telegraph.co.uk

Just One Exercise

It was a start

I spent too many years feeling that I was just not able to exercise for countless good RA reasons.  Then a physio talked me into doing just one exercise. " Lying (my choice) or standing, imagine that someone has a knife pointed at your naval and pull in your stomach muscles and hold them in.  When that gets too easy pull those muscles in and also try to move your naval up towards your neck"

It doesn't need to be a big knife that you imagine.

It was very easy and so I did it for maybe 2 months for 5 minutes in the morning and in the evening.  Then I had to see a different rheumatologist one day and when she was checking that my abdominal area she told me I had GOOD ABS.  Imagine - 20 years of no exercise and under 2 months of doing something easy moves me up to having good abs.  What a motivation that was!

It shows the amazing impact that an offhand positive comment can have. Encouragement is such a key factor in the management of your health life.

Since that comment I have made exercise a larger part of my life.