Posts Tagged ‘Methotrexate’

A Year Of Challenges

April 2, 2013

I have been thinking about a year ago at this time – I was still in rehab with a broken hip and waiting for the doc to tell me I could have full weight-bearing on my right leg.  When Feb. 24th came around, I wasn’t sure I wanted to think about it as an anniversary, but what would I call it?  Marking of a milestone or event?  Still haven’t figured it out yet – fortunately the world won’t come to an end if I don’t have a name for it.  The other weekend Eddie and I were on  Pacific Highway South, we passed Stafford and his comment was “I don’t ever want to think about that place again!”.

I had a different feeling about it – I think of it fondly because of the people I met and who were so good to me as I began to recover.  I think about my room on the first floor – all my own, not having to share with anyone.  It had a view west and I saw Puget Sound and Vashon Island across the way; plus I saw the planes landing from the south and taking off to the south.  There were lights on at night, plus I looked down on Pac Highway South and saw the traffic and the lights.

I was the first time in a long time the focus was on me, healing, therapy and just doing normal personal things.  I was alone in my room – I had books and writing material but somehow I was too tired to touch any of them.  I was tired all the time but still was able to laugh with the aides, the therapists, the staff in the dining room as well as the doc and nurses.  I still had to deal with stuff for Mom and for Eddie as well – plus listen to him complain about dealing with Mom as if I had no idea what it was like.  I did spend a lot of time in my room with the door closed, it was great.

One thing I learned was that when I ask for something, make sure it is very specific because I don’t know what will show up otherwise.  I kept thinking and saying, I need a break – I see now I needed to say 2 weeks in a spa because I ended up with a broken hip.  In some ways it was a bit of a spa but not in the usual way.  I remember when I went up to therapy there was the smell of newly baked cookies – they had a jar on the front desk for anyone who wanted them.  It was easy to recognize the peanut butter cookies, but not always other kinds.

What I remember most are the aides who were always there for me.  Eleanor usually came in to help me get dressed – a tall, well endowed black woman not only chewed gum but also snapped it quite often.  I thought that would drive me crazy faster than anything.  Strangely it didn’t.  Eleanor was like a mama bear, she took care of her charges and defends them , even going up to therapy to make sure they weren’t terrorizing her charges.  She had a great sense of humor and we laughed a lot.  I think she was from the South somewhere – for some reason Alabama comes to mind.  One day she was helping me put on my bra and  I said something about “the girls” were in all the way.  apparently she had never heard that expression before and found it funny.

She didn’t suffer fools gladly but if I needed her, she was there for me.  About three weeks after I arrived, I woke up with a terrible flare-up, I hurt all over and she came in and found me crying on the john.  She was a very comforting mama bear and was so good to me.  When I went upstairs to therapy, I was still having a miserable time, so Carol, my OT, put on hot packs for shoulders and dipped my hands in paraffin.  It helped and as usual, by afternoon I was more comfortable.  It wasn’t the only time I had trouble, it wasn’t until I was able to take the Methotrexate again for three weeks before I began to feel much better.  They had stopped it so my incision would heal well.  I don’t remember the doc telling me that, though I was pretty doped up in the hospital for a bit – not sure I remember very much of that part.

I remember one time when I was working with Sabrina, a PT, and I was having problems that day.  I finally told her “I don’t mean to be uncooperative, it just hurts more than usual”.  Her reply surprised me – “Uncooperative!  You have never refused to do anything we have asked!”.  They could tell  when I was really having trouble and not just dogging it.  There were times when I was there and someone would refuse to do things, kept saying it hurts.  Or refuse to work with a particular therapist, though no one was sure why.

I am forever grateful to every one at Stafford, they made it possible for me to leave on my ow two feet and a wheely walker.

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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