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.
Gift of RA 