Posts Tagged ‘Blood pressure’

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.

Another Ball To Juggle

July 22, 2012

Sometimes I wonder if I am in my right mind.  With all the stuff happening I have enrolled in a drug study for RA.  It is focused on blood pressure and how it is affected  by the drug.  Fortunately it is only a 35 day double blind study, then I will be on open label with the real drug.  I don’t have to go of any of my meds and we’ll see how it works.

I found out about it at the beginning of the year – it was for the full study and there was such a time crunch that it wasn’t really going to work for me to be examined and the labs before the deadline.  However, Cari told me they were doing this second part with blood pressure focus and it would be a short one – that I qualified for it because I am on a blood pressure med.  She thought it would start in March but it was only last month when she contacted me again.  Last Monday I went down to Tacoma to do lab tests, blood work, TB test, chest x-rays, examine my joints plus questions, questions, questions.

The problem of being 65 and having RA for 41 years is that I have done a lot of things over the years and it is hard to remember just when things occurred.  So when she asked when I started Methotrexate, I had to stop and think – Where was I at the time?  Then I could figure out approximate years and then what was happening at the time.  First Cari asked me a whole bunch of questions, then Dr. Ettlinger has a whole mess himself.  They wanted concise answers and I have a tendency to give all the details – probably took longer than it should have.

They said they would process the tests and see if I qualify – three days later Cari called to say I passed with flying colors.  Except that isn’t necessarily good news.  It means I have more than 4 painful joints, my sed rate is up and I can’t remember what else was elevated.  So it may not sound good in normal circumstances but in this context, it is great news.

I went back a week later  and they gave me a blood pressure monitor and a modem to take home with me – they wanted me to take my blood pressure twice a day – two times one minute apart.  Fortunately the monitor keeps the readings because the modem was not working.   Cari had been on the phone with the group with the modem but no matter what she tried, it really wasn’t behaving.  She had me take it home to see how it worked here – it didn’t.   So I called her that afternoon and told her it definitely wasn’t working, so she was going to call and see about getting another one.  She thought it would arrive on Wednesday morning, so she was going to call and let me know when it arrived.  She did call but it wasn’t going to work very well for me, but since I was going to be in Edgewood the next day for my massage, I could meet her outside the Safeway in Milton.  And so it worked out well.

I have been using the monitor since I saw her last Monday and it is going well – the modem is working and all is hunky dory.  It is rather interesting to see what the blood pressure is, plus my pulse and so far it hasn’t gone above 117.  It also went down to 96 – reminds me of rehab when they were constantly doing my vitals every time I turned around.  My pressure ranged from 97 to 132 – the last one was when I was scared out of my sleep in the middle of the night.  I had no idea everything could vary so much.

Next step is Tuesday – I will go back and give them the modem and monitor, then they will put a 24 hour blood pressure monitor on me.  I will come back Wednesday morning to give that back to them and then actually start taking the drug.  I am going to have to fast for Wednesday morning – wouldn’t you know it would be Breakfast Club.  I need to remember to take something to eat when they say it is okay, I will be hungry by then.  who knows what else they will want to do before they let me go home with the drug.  It’s an interesting process and I wonder what the results will be.  It is probably easier to just forget about it and do what I need to do, then maybe one day I will notice how much better I feel.

It should be an interesting week, beginning the drug study and my Mom will be evaluated to see if she qualifies for a program to help her with activities and another place to live.  I am concerned about the transition and how it will be for her, so I have asked God, my angels, spirit guides and master teaches to create the solution – to know it is already in place.  I am so glad I am not all alone doing this.


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