Posts Tagged ‘Conditions and Diseases’

Squirrel Wheel Week – Part 2

August 7, 2012

Doing stuff for Mom was not the only thing I worked on the last 2 weeks.  I signed up for the drug study for Rheumatoid Arthritis – a lot more stuff to do than I realized.  since they are doing it to monitor blood pressure, I have had a lot of blood pressure reading taken in several forms.  I have them at the doc’s office, then they sent me home with a blood pressure monitor and cuff, plus a modem.  I was to do my blood pressure twice, one minute apart in the morning and again at night.  The modem sends it directly to the group who does the monitoring.  Except it turned out the modem wasn’t working.  So Carey ordered a new one and we met halfway between to exchange them.  The following week I took the equipment back and had to do a 24 hour blood pressure monitoring – even 20 minutes.  So I had the cuff on my left arm, a belt with the monitor in a pouch.  This was about 10 in the morning, so it would be the following morning at 10 before I could take it off.  An interesting experience.  I didn’t really have much to do that day, so I came home and worked on things here.  If I was standing when the little beep went off, I had to sit down and wait for it to do its thing.  I will admit, I didn’t get much sleep that night, though after 10 pm the beep was silent until 6 am.  I went to Breakfast Club with it, amid questions.  The real bummer was having to fast until I went to the doc – I knew there were more blood tests coming. I was pleased that Brandy made a breakfast to go for me, I was going need some protein when I was finished.  After all the stuff Carey had to do, time was marching on – but I finally was given the drug.  They are bright turquoise caplets – not quite football shaped.  I took two then and then it is two twice a day for the study.   I didn’t think it would take so long and I ended up late for Mom’s evaluation.  Fortunately Kathy was there and I made it in time to talk to Linda before she left.

I went back again last week with my pill bottle – seemed a shame to get rid of them when I hadn’t used more than half a bottle.  Carey ended up giving it back to me for this week.  She also had me doing the blood pressure twice a day again, tonight is the last one.  I will take it back to her tomorrow and see what else she has in store for me.  I am not sure if I notice anything yet because there have been so many other things I have had to deal with that I haven’t really thought about it.  Mostly they are checking to see if the rise in blood pressure they have noticed in other studies will affect someone whose blood pressure is steady.  If so, they will have to make adjustments.

In the middle of all the other stuff, I was asked to do the 5 minute presentation on short notice, so I said I would.  Of course I had to do a self promo to give away – short notice self promos don’t always work out the way one expects.  I had seen a great idea using a prescription bottle with a really cool label, then filled with breath mints.  I didn’t have time to order the prescription bottles so I looked around and found some cool blue glass bottles.  They looked great when I put the label on – but the M&M’s were too big for the mouth of the jar.  So I found some Smarties that came in rolls, I figured two rolls would fill the bottle.  They went into the mouth go the bottle but the neck was too narrow.  I almost didn’t do the promo, then decided it was a good example of last-minute projects and why lead time is important.  I took two rolls of Smarties and taped them together, so they received a bottle and a set of 2 rolls.  Also my topic about follow up went pretty well but I ran out of time – good thing I had a handout.

To add to all of the other things, I bought a new Mac and an iPad.  I took my old one in to do a data transfer after I had bought an external hard drive to back everything up in case there was a problem with the data transfer.  I used Eddie’s laptop while mine was at Apple, I certainly missed it!  Now I have it back and it is working out pretty well, just some things I don’t know how to get working.  I bought the One to One for a year, now I have to figure out when I can go in for my hour once a week.  I feel as if I have been going at a dead run, but I accomplished everything I was scrambling to do.  I pat myself on the back for that.

I’m sure I have forgotten some things, they will probably come back to me at some point.  Oh, to add to the “I swear, there is a funny side”, Mom asked me the other morning when I was about to pour her coffee – “Are sure it is legal for you to do this?”  I told her of course, I don’t serve anything illegal here.   The big “They” lost that one.

Backstory – why not me?

February 28, 2010

To know more about who I am and what qualifies me to write this blog, I thought a bit of backstory might answer a few questions.  I mentioned I have had  Rheumatoid Arthritis for 39 years – in November 2009  it was 39 years that I was diagnosed.  Whether this is a reason to celebrate is still open to question.  I was fortunate that I was diagnosed right away, in 1970 it was not always easy for women to be able to be diagnosed that soon.  I met many women who had not been taken seriously, they were told they were just depressed or   to find an interest or that they were imagining it.  Yet a man could go in to see the doc and be taken seriously right away.

Also, the usual treatment was to start with aspirin and slowly work up the pyramid to gold injections.  From what I can see, many rheumatologists now start right in with Methorexate, and more heavy duty drugs to turn off the inflammation.  I find myself looking at other ways that are non-pharmaceutical since my body has had so many drugs over the years.  So far I haven’t found anything that really makes a difference, though I have many more possibilities to explore.  When I find what works, I will be happy to share it – though with body chemistry and course of disease different for everyone, there is no one answer for everyone.

I have also learned that much of RA comes from within, that means attitude, outlook and perception.  The one thing I have learned is that it is not necessarily “Why me?”, or even “Why not me?” that is important. It is the “How do I deal with it” that is important.  Even though I tend to feel I whinge about it all the time, people often tell me how amazed they are that I have such a positive attitude.  Obviously the inside feelings don’t show on the outside.   I have come to understand that the Universe is not out to get me, instead the Universe supports me and takes care of me.  There is a gift in RA, I am l working out what it is.  If anything I have had to deal with can benefit someone else, then that is something very positive coming out of something that sometimes feels very negative.

I consider myself an expert on my own RA, not for anyone else.


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