Gift of RA

This was an assignment from my Physical Therapist – not sure it was to get me to start writing again or see what I have been feeling over this year.

Hard to believe it is almost the last quarter of 2019 – what an eventful year it has been so far!  I’m not sure how to write about it without sounding dreary, whingeing or complaining because it has been very uncomfortable.  I’ve done things I never thought I would have to think about, much less do.

         We came back from Toronto after Christmas and had a fun time – only my knees weren’t happy.  So I went to my rheumatologist to see what could be done to reduce the pain – x-rays revealed I have osteoarthritis inside my knees.  That wasn’t unexpected.  Before we had time to work on the knees, I found myself so short of breath after just a few steps or doing something simple.  I had no idea what happened or what was causing it.  I ended doing tests, scans of my heart valves – so many I don’t remember them all   They decided my right mitral valve wasn’t closing properly and they wanted to do an esophageal scan – one that requires putting something down my throat.  Thank goodness they gave me sedation for that one.  After all that balderdash, they decided the valve was okay.

      I was still short of breath and all I wanted to do was sleep.  I was gaining weight until I felt like the Michelin Man – my clothes were getting tight and the idea of buying bigger clothes wasn’t appealing.  To add to that, I was having trouble with wounds on my left leg from the Lymphedema but no way to  lessen the fluid.  They know me very well at wound care, I see them every week .  They even discharged me a few weeks ago because the last wound was healed.  Twelve hours later I blisters again – this time the pain has been very intense at times – it burns like crazy.  They keep saying they are shallow – why does it hurt so much?

     While that was happening, I came down with Shingles.  I think I am one of the lucky ones because it didn’t hurt and was only on the upper right corner of my face.  Thank goodness it didn’t go into my eye.  It took some time to clear up, Eddie and I became rather good at eye drops.  A bit later I had conjunctivitis in my left eye – more eye drops.

      Sleep was not easy during those months – I would go to sleep with Eddie at night and 2 hours later I was wide awake and so hot I had to go into the living room so not to keep him awake.  I would sleep in fits and starts, sometimes for a few hours.  Then by 6 I could go back to sleep as if nothing had happened.  I had naps in the afternoon to make up for the sleep I lost at night – didn’t work all that well.  Poor Eddie, he was so worried about me and I was a mess.

        The week I slid off the bed twice, he had the Tri-Med guys haul me off to the hospital because he knew something was wrong.  By then, I felt I was on a parallel planet and wasn’t making much sense.  Twice I got stuck in corner and couldn’t stand back up straight without Eddie’s help.  I gave up driving in March or April because I didn’t think I had sufficient control over the car.  

     I spent a week in the hospital, they pumped liquid Lacix which meant I was constantly peeing.  They also diagnosed a UTI with Sepsis – that’s why I was so spacey a lot of the time.  They also finally gave a diagnosis for shortness of breath and several other symptoms – Congestive Heart Failure.  That was scary – was I going to die in the next 10 minutes?  No one really explained things to me in easy to understand terms – I figured I would wait until I saw Doc Pierce to get the straight scoop.  He told me it was wasn’t as serious as the name implies; I need to keep fluid down and not get dehydrated because my heart is having trouble pumping excess fluid back out of my system.  So I wasn’t ready to drop dead in the next t 10 minutes.

     I was so weak after a week in the hospital that they recommended I spend some time in rehab to strengthen my muscles, etc.  I went back to Stafford Healthcare since they had been so good to me in  2012  with my hip.   There were only a couple I recognized, the cast of characters had changed so much.   They were very good to me and I spent 3 weeks there with OT and PT.   Eddie and I spent our 50th anniversary there – not quite what I had in mind.  It took a while before the cleared me to go solo in my wheelie walker – I didn’t do much soloing because I didn’t have a whole lot of energy.

        Finally, at the end of May I came home.  Eddie was anxious I have home health care, so for the first time I had hot and cold running people coming and going.  They were a great group, I enjoyed working with all of them – I am not big on exercises and they had some for me. I did improve and was getting my strength and stamina slowly – certainly not fast enough for me.  I wanted to pick up my life and start doing the things I had been doing.  That was not to be.  I figured my job was to get well first.  At times it was hard to be homebound, not going out unless Eddie or Kathy took me places.  Many times it felt it was too much effort to do anything, my knees hurt and walking wasn’t comfortable.  The only thing I did well was sleep.

         I began to realize there was more to this than just needing rest – there were other factors I hadn’t really thought about.  Yes, there was depression and still is, but there is also depression about what my life might have been without RA as well as depression as a symptom of RA.  There was and is grief – about Mom’s death, about what could have been, probably other things as well.  Lately I wonder if I can take care of myself – I see everything Eddie is doing that I used to do – it scares me to be dependent.  It also scares me to see how much trouble I have doing things – everything takes so much longer to do.

        Lately I realize I have no goals, structure or motivation to do things.  I have lost my energy, enthusiasm and vitality – everything at times seems to take too much energy.  The odd thing is when I am sitting I feel I am much better – until I get up and walk.  Then I start feeling like an much older woman, an invalid – I don’t feel I am either but I seem to move that way.  Have I only lost myself for a while?

         My body wasn’t finished with me, I found I had very serious anemia – my hematocrit was 24, normal is about 38.  I saw Doc Pierce and he did a new test and found it was 23 – 22 sends you to the hospital for a transfusion.  The doc in ER didn’t think it was as serious Doc Pierce, until he did one himself and it was 19.  They admitted me to the hospital and gave me 2 units of blood.  They had decided there was  a leak somewhere, so they also did and Endoscopy and Colonoscopy.  The colonoscopy was clear but the GI doc found my esophagus had a tightening – he decided to do another one in October – he wants to open it up and see what’s going on.  Lately I have been bringing my pills back up without going down properly.  Thank goodness they sedated me for those two.  Even so, I had to drink a gallon of liquid to clear out my colon.  Not the most comfortable two days.  Then I was back on home health – except the company I was working with dropped me like a hot potato –  no explanation.  So they transferred me over to this new one.  Everyone is great, but I would not recommend the first group.  I also felt I had lost ground and at times felt back at square one.  But I haven’t lost as much as I thought, but walking still takes some effort.

     I was ready to practice driving, but Eddie wasn’t happy with my Subaru – he decided to buy a car that was higher so it would be easier for me to get in and out.  We went over to the Volvo dealer and I found myself driving an XC40.  It didn’t seem strange at all even though I hadn’t driven for several months.  I must admit, I feel safer in a Volvo than a Subaru.  It was  one of the last 2019 cars, so it had packages on it – I still haven’t learned all the bells and whistles yet.  Eddie has been my co-pilot, I even drove to  Kent by myself to see Dr. Cheryl.  However, if I drive myself around, I’m not considered homebound.

     Not too long after, I was back in the hospital for the anemia, etc.  I have to admit, it feels like a lot of car and I don’t quite feel I am in control yet.  I haven’t driven since, but driving again is one of my goals.  Once again, 3 steps forward, 2 steps back.

       I have trouble waking up in the morning – it is hard to open my eyes and keep them open.  Some days I feel as if I am trying to stay awake during the day – can’t wait for my nap!  There are rare days when I wake up and I am wide awake, feel energetic and do very well during the day.  I don’t have a nap or fall asleep in the chair in the late afternoon.  I keep wondering what thoughts, words, actions, beliefs or attitude has made a difference and how do I know what it was?  Those days seem to come few and far between, could it be my memory is faulty and they come more often than I think?  It is so much easier to do things when I have energy.  Usually I see it as too much effort and energy to do anything.

      Even if I was able to be energetic and do things, I still have to deal with the left leg being bandaged all the time.  I can’t take a shower easily – I have to have it taped up in a garbage bag so the bandage doesn’t get wet.  I don’t quite have the freedom I used to with 2 good legs.  This last set to blisters has really gone from a few blisters with clear fluid to a large bloody mess in the back of my calf.  Sometimes the bandages create more blisters or go straight to sores.  They keep saying it is getting better, that they are only shallow – seems to be more trouble than the deeper ones.  I notice the burning when I walk, when I sit and certainly if I inadvertently rub it against something.  I have to take Tylenol every night to be able to sleep.  No more Advil, even though it works better.

   To Be Continued